tag:blogger.com,1999:blog-49233430012045477742024-03-04T23:32:47.582-05:00A Million MiraclesJulia Feitnerhttp://www.blogger.com/profile/11981970764141155286noreply@blogger.comBlogger55125tag:blogger.com,1999:blog-4923343001204547774.post-87551914508392499082010-02-15T21:28:00.001-05:002010-02-15T21:28:38.627-05:00#55 - Get me off this mountain<span class="Apple-style-span" style="border-collapse: collapse; color: #666666;"><span class="Apple-style-span" style="color: black;"><b><i><span class="Apple-style-span" style="font-family: inherit;">Date Sent: Mon, Feb 15, 2010 at 9:23 PM</span></i></b></span></span><br />
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</i></b> This past weekend I participated in a women's conference, Understanding Grace, and it was the first time I've ever participated in something like that (other than sitting comfortably at a table just listening and taking notes). It was an incredibly stretching experience - and I learned SO MUCH - about the topic (as I reflected, read, and pondered the topic in advance), about myself, and about God's role in providing me with understanding. It was a life changing experience for me, and I felt so blessed to participate. </span></span></span><br />
<div><span class="Apple-style-span" style="color: black;"><span class="Apple-style-span" style="font-family: inherit;"><br />
</span> </span></div><div><span class="Apple-style-span" style="color: black;"><span class="Apple-style-span" style="font-family: inherit;">The conference center was located atop a VERY high hill, and God was gracious to me - the elevation didn't prove too much for my lungs to handle. I even commented at one point that a year ago I would have needed to be on constant oxygen at that elevation. The conference was Friday evening (that was my part), and most of Saturday. Then Sunday marked not only Valentine's Day, but also the 2 year anniversary since I was originally hospitalized, and thus began this journey in an in-my-face sort of way. Last year, as is true of first anniversaries, Valentine's Day was very difficult. This year, I spent the days leading up to it discussing with a wonderful group of women some of the good that's come from the pain. In hopes of helping to bring back the positive connotation most people have for Valentine's Day, my mother offered to watch the boys Saturday night while Aaron and I spent the night "away and alone." We ended up spending the night at Oglebay Park, and picked up the boys Sunday morning in time for her to leave for Sunday School.</span></span><br />
<div><span class="Apple-style-span" style="color: black;"><span class="Apple-style-span" style="font-family: inherit;"><br />
</span> </span></div><div><span class="Apple-style-span" style="color: black;"><span class="Apple-style-span" style="font-family: inherit;">I'm not sure if our room at Oglebay was higher in elevation than where the conference center was located, or if God just allowed the elevation to bother me more - a LOT more. I really, REALLY struggled with lightheadedness. Sunday morning, as we enjoyed a breakfast buffet, overlooking the beautiful snowy hills at Oglebay, the thought entered my mind, "God, it sure is beautiful up here. But get me off this mountain and back down to the valley." Though I meant it literally, the figurative meaning immediately swept over me and I started trying to rescind my words! But all morning that prayer kept replaying in my mind.</span></span></div><div><span class="Apple-style-span" style="color: black;"><span class="Apple-style-span" style="font-family: inherit;"><br />
</span> </span></div><div><span class="Apple-style-span" style="color: black;"><span class="Apple-style-span" style="font-family: inherit;">As Christians we long for beautiful, peaceful mountaintop experiences. We pray for easy lives filled with happiness and comfort. And occasionally God provides us with just that. God gives us those moments to gain new perspective, and momentarily to rest. But that's not where we grow - not where we're stretched - not where we learn the most about our God. We GROW in the valleys - in the swamps - in the bogs - in the river rapids .... I would be VERY happy not to have any more struggles for a LONG time, but I need to continue to grow. Yes, sometimes that growth comes from reflection. But sometimes growth needs to come from being stretched - from reaching the end of my rope, and needing to grab ahold of God so I won't fall. </span></span></div><div><span class="Apple-style-span" style="color: black;"><span class="Apple-style-span" style="font-family: inherit;"><br />
</span> </span></div><div><span class="Apple-style-span" style="color: black;"><span class="Apple-style-span" style="font-family: inherit;">While I pray that I don't walk through "the valley of the shadow of death" (Psalm 23:4a) again anytime soon, I do want to keep learning about my amazing God - His provision, His grace, His forgiveness, His love - and how I can show Him to others. So ... YES. "God, it sure is beautiful up here. But get me off this mountain and back down to the valley."</span></span></div><div><span class="Apple-style-span" style="color: black;"><span class="Apple-style-span" style="font-family: inherit;"><br />
</span> </span></div><div><span class="Apple-style-span" style="color: black;"><span class="Apple-style-span" style="font-family: inherit;">~ Julia</span></span></div></div>Julia Feitnerhttp://www.blogger.com/profile/11981970764141155286noreply@blogger.com1tag:blogger.com,1999:blog-4923343001204547774.post-16029656216919647332010-01-30T22:29:00.001-05:002010-01-30T22:30:24.604-05:00#54 - Tough Conversations<span class="Apple-style-span" style="border-collapse: collapse; font-family: arial, sans-serif;"><i><b><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Date Sent: Sat, Jan 30, 2010 at 10:23 PM</span></b></i></span><br />
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</i></b> </span><span style="font-family: 'Times New Roman';"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Alex's bedtime stories tonight were taken from his children's Bible - we probably covered 10 stories. But the one that had the longest conversation was the one of the paralytic who had four friends who were desperate to get him to Jesus. The crowds were too thick, and they couldn't find a way to squeeze through. So, they climbed up on the roof, made a hole, and lowered him in. Seeing their faith, Jesus healed the man, who then picked up his mat and walked. (Mark 2:1-12)</span></span></span><br />
<div style="clear: both; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: center;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br />
</span></div><div><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">As I read the story tonight, Alex had a contemplative look on his face. When I finished, he remained still. Finally he broke the silence - "Mommy, you need friends to take you to Jesus. Then he would fix your lungs so you could breathe. You can't run. You can't play in the snow or go swimming with me. That must make Jesus very sad. If your friends took you to him he would want you to be all better." </span></div><div><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br />
</span></div><div><i><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Gulp.</span></i></div><div><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br />
</span></div><div><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">We had a long talk about how sickness does make Jesus sad - and how sometimes it makes us sad too. We talked about how much we'd both like for me to be able to do those things with him - and about all the fun things I </span><i><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">can</span></i><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"> do. We talked about how perhaps one day Jesus will choose to heal me. We talked about all the friends who have taken me to Jesus - in prayer. But something that's wonderful about Jesus, is that he never does the same thing the same way twice. He makes each person's story unique - each person's encounter with him is special in its own way. </span></div><div><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br />
</span></div><div><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">After leaving Alex's bedside, I was inundated with memories of friends praying with me - of encouraging cards - of uplifting emails - of tearful hugs - and of people rolling up their sleeves and helping me - helping my family - in ways we so desperately needed it. I remembered friends grocery shopping for us - and cleaning our toilets. I remember friends sobbing with us - and loving on our children when Aaron was holding my barely conscious hand in the hospital.</span></div><div><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br />
</span></div><div><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">I remember one morning sitting in Tuesday Morning Bible Study - and having two separate friends feel the burning need for me to be prayed over. That morning God gave them the role of the friends who were to bring their sick friend to Jesus. During that special, intimate prayer time God worked on some hearts, and someone gave me an encouraging word as to perhaps one of the "deeper" reasons I have this illness. And that day </span><i><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">something </span></i><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">was healed inside of me. </span></div><div><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br />
</span></div><div><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">After Bible study concluded I went shopping (with the kiddos) at the mall, and for the first time in months I was able to walk the length of the mall - at a normal speed - without thinking I was going to pass out - without my face turning red (a sign of how hard my heart was pumping to try oxygenate my blood). And a month or two later one of those friends "just happened" to be with me when I got an impromptu chest x-ray done - and saw that my heart appeared to be healed. Two years ago, when I was first diagnosed with PH, the right side of my heart was 2.5 times larger than the left side (it's supposed to be smaller than the left). But that x-ray showed my heart to be the PERFECT size. "Every good and perfect gift comes from above." (James 1:17a). I'm convinced that day - the day those two friends tore through a ceiling to get me to Jesus - was when he finished re-remodeling my heart. But how do I explain all of that to a four-year-old boy? I'm not so sure I SHOULD.</span></div><div><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br />
</span></div><div><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">This isn't MY illness. It's God's. It's his to do with what he wishes. It's not that I don't have enough faith for Him to heal me. It's not that others haven't prayed diligently enough for my healing to come to fruition. It's that His work isn't done - His work in my life - His work in my family's life - and perhaps, just perhaps, His work in your life either. I don't fool myself that I'm sick so that "the collective you" can learn from the lessons I'm learning. I'm not that conceited. But God's permitted me to be blessed, as I've spoken with various people, to see how He's also using this illness - His illness - for a greater purpose than just my own maturation.</span></div><div><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br />
</span></div><div><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Today I'm sick. Only God fully knows why - and only He knows for how long. But at least one thing IS for certain. My illness is teaching Alex invaluable Biblical lessons in a real, in-your-face kind of way that he probably wouldn't learn any other way at his age. It's not an easy path I'm walking. As Christians we're told to </span><i><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">expect</span></i><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"> life to be a</span><i><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"> difficult path</span></i><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"> - Jesus said to "take up [your] cross and follow me" (Mark 8:34). I know that my God is big enough to have this illness "work together for GOOD" (Romans 8:28) in my children's lives. It's just ... sometimes conversations break my heart. I'm overwhelmed with Alex's love for me. I'm overwhelmed that I'm not like all the other Mommies he knows. And sometimes I'm at a loss to find words that he'll understand ... especially when I don't fully understand myself. After all, he's still four - I wasn't expecting to have such tough conversations with him at this age. </span></div><div><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br />
</span></div><div><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Excuse me, while I go get another tissue.</span></div><div><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br />
</span></div><div><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">~ Julia</span></div>Julia Feitnerhttp://www.blogger.com/profile/11981970764141155286noreply@blogger.com0tag:blogger.com,1999:blog-4923343001204547774.post-34951353931216380812009-12-13T00:05:00.002-05:002010-01-15T15:53:58.260-05:00#53 - In Sickness & In Health<span style="border-collapse: collapse; font-family: arial, sans-serif; font-size: 13px;"></span><br />
<span style="border-collapse: collapse; font-family: arial, sans-serif; font-size: 13px;"><div><b><i>Date Sent: Sun, Dec 13, 2009 at 12:02 AM</i></b><br />
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(Most) people on their wedding day mean every word of their marriage vows. Of course they hope that their marriage will include a lot more "for richer" than "for poorers." But when you've got a terminal case of "wedding-day love," you think that love is really all a couple needs to beat the odds and happily survive 50 years together. I think this naivete can be a good thing on a wedding day (to a degree). The happiness of the moment should be enough. But, life doesn't stay that simple for long - there's bad morning breath even on the honeymoon. And as soon as you get home there's a stack of bills waiting in your mailbox. Suddenly reality hits - that one of the biggest differences between life BEFORE the wedding and life AFTER the wedding is that now it's more complicated. Suddenly there's two sets of bosses who expect overtime, and little Johnny's stuck at day care. When you're living LIFE it's awfully easy to forget your marriage vows and just throw in the towel when things get tough and "less romantic."<br />
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</div><div>It's not easy to be in your twenties and not be able to take a shower alone. I don't mean a "honeymoon-style" shower. I mean a real shower. It's not easy to say "Honey, I can't bend to wash my legs. Would you mind helping me ... again?" or "I'm sorry you're out of clean boxers, it hurts too much to do the laundry." It's hard to pick up and comfort your toddler who just tripped and bumped his head - when you know the act of picking him up is going to hurt you exponentially more than he's hurting at that moment. As a mother, you do it anyway. But it's hard. When does life get easier? Sometimes it seems like it's just a trade-off. One month your checkbook's in the black ("for richer"), but you feel like you're drowning "in sickness" troubles instead. OR - - - How do you stay positive and supportive when your spouse is having these struggles? It'd be so much easier to just walk out and not have to deal with the tough stuff. I guess he really meant what he said on that snowy evening almost 6 years ago.<br />
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</div><div>Yeah, so obviously my transition to sub-q Remodulin has been a rough one. There have been only three times since I was diagnosed (almost 2 years ago) that I seriously considered "quitting." One of them was this past month. I haven't decided which is worse - not being able to breathe or excruciating pain. But the combination ....... It's gotten better, at least. I was told that 50% of people on sub-q Remodulin have some pain, and that after each time they place the sub-q they can expect some pain for the first 6 days then it'll just "turn off." But if they can just "push through" those 6 days, they might be pain free for six weeks. On a scale of 1-10, the pain of my first placement was a 14 - and it lasted 12 days. Then I had about a week (where I frantically caught up on laundry, cleaning, grocery shopping, etc.) before it fell out and I had to start all over again. A friend suggested (from experience) that I try placing it in a different spot. That one was MUCH better! The pain only got to a 7 or an 8, but it also lasted 12 days. My doctor has explained to me that "this needs to work." According to him, I'm NOT going back to the other type of infusion because the blood infections could kill me. (He doesn't want me to die - what a great doc!) But, the idea that any day this whole 12 days of excruciating pain could start over again - for the rest of my life (or till God decides it's time to heal me)...... That's a tough pill to swallow. I've had so many "good days" and "bad days" the past several years that I've learned to deal with TODAY, and hope that tomorrow's gonna be better. But lately I've allowed myself to become bogged down by fear - fear that the horrible pain might start again tomorrow. And fear's not something I've struggled with so far in regards to this illness. Fear can be debilitating - or at least it has been for me.<br />
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</div><div>I've been given this path to walk - this is my life. Whether or not it was what I dreamed it would be like - it is my reality. But this past month I've stopped walking the path. Don't spiritualize this and think that I've backslidden. I haven't. I haven't taken a side-road either. No, I took one big side-step off the path and curled up under a rock. I hoped that if I hid there long enough this pain - this fear - this insecurity in my ability to cope with the cards I've been dealt - that it would all just go away. But it didn't. No matter how I tried to avoid it - my reality kept slapping me in the face reminding me of what I was trying to avoid. It just made things worse. Rather than just dealing with the pain, I was also dealing with insecurity, fear, hopelessness.... These past several years have had some high highs, and some low lows. But trying to escape my reality - questioning God - and considering "exit strategies" - that only compounded my problems.<br />
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</div><div>It's taken me a long time (and several good sermons from ou<span style="font-family: arial, helvetica, sans-serif;">r "new church shopping" church visits) to get out of this funk. Okay, well, to be perfectly honest, I'm not 100% out of it, but I'm almost there. This past Sunday's sermon (from church #3 we've visited) was on HOPE. I cried through the whole service (what a GREAT first impression I made!). I had lost hope - not hope that God will heal me. No, worse - I had lost hope that I could survive this path long enough for Him to get around to it. I wasn't sure I could survive the day. But one of the first sentences the pastor said was "God is still in the business of offering and instilling hope." Well, that did it - I had to get out two more tissues. </span><br />
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</div><div><span style="font-family: arial, helvetica, sans-serif;">The pastor didn't talk about "casting all your cares on Him because He cares for you" (I Peter 5:7). He didn't talk about having faith that God will see you through the tough times - just keep looking for that silver lining. He got right to the matter (in my life) - he talk</span><span style="font-family: arial, helvetica, sans-serif;">ed about God breathing life into that which was (or felt) dead. I know that I'm not the only person to have felt so discouraged. Right in Ezekiel, it talks about how the Israelites (who were in exile) felt the same: " 'Our bones are dried up and our hope is gone.' " (Ezekiel 37:11b) But God promised: "</span><span style="font-family: arial, helvetica, sans-serif;">I am going to open your graves and bring you up from them; I will bring you back to the land of Israel. Then you, my people, will know that I am the LORD, when I open your graves and bring you up from them. I will put my Spirit in you and you will live, and I will settle you in your own land. Then you will know that I the LORD have spoken, and I have done it, declares the LORD.' " (Ezekiel 37:12b-14) Surely you've at least heard of this passage - there's a children's song about "dem bones, dem bones, dem dry bones." Well, it's based on this passage.</span><br />
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</div><div><span style="font-family: arial, helvetica, sans-serif;">I find it reassuring to me that God didn't tell Ezekiel that He was gonna make everything better, that He was gonna make all their problems disappear. He was talking about (metaphorically) resurrecting DEAD bones ... they weren't people who were "floundering" - they were DEAD - had given up ALL hope. (I haven't gotten quite that far yet - I am still breathing, after all.) It was the restoring life - restoring breath - restoring HOPE that showed that He was the one true God. Well, I needed some serious restoration. And He's lovingly started the process.</span><br />
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</div><div><span style="font-family: arial, helvetica, sans-serif;">How? He gave me a sermon about HOPE when I was hopeless. He gave me a husband who washed my legs when I couldn't. And He gave me perspective. I've contemplated several times this past month if it's worse not to be able to breathe or to be in excruciating pain. Well, Christ experienced both at the same time (the final cause of death in a crucifixion is suffocation because the person can no longer lift them-self up to inhale). And he did it WILLINGLY - FOR ME.<br />
</span><br />
</div><div>~ Julia<br />
</div></div></div></span>Julia Feitnerhttp://www.blogger.com/profile/11981970764141155286noreply@blogger.com4tag:blogger.com,1999:blog-4923343001204547774.post-42078669582277597172009-10-30T04:01:00.001-04:002009-10-30T04:02:29.339-04:00#52 - now you see me - now you don't<span class="Apple-style-span" style="font-family: arial, sans-serif; font-size: 13px; border-collapse: collapse; "><i><b>Date Sent: Fri, Oct 30, 2009 at 3:58 AM</b></i><div><div><span style="font-size:78%;"><span style="font-size: 9px; "><br /></span></span></div><div><div class="gmail_quote">I can fall asleep at the drop of a hat - anywhere - anytime. This is a very useful trick I learned from my mother. I have never had sleep problems. But I've been lying in bed for the past 40 minutes wide awake, ready to tackle the day. It's 3 am - this is nuts! I finally decided to get up and type this email. Hopefully once I'm finished sleep will become my friend once again.<div><br /></div><div>On Wednesday a week ago, someone who gets these emails (and found me on Facebook) posted the following verse on Facebook: "Be strong and courageous; do not be terrified or afraid. For it is the Lord your God who goes with you, He will not leave you or forsake you." (Deuteronomy 31:6). Well, I read that - it spoke to me - and I started speaking to God! "Oh no! Not now! We're moving in ONE WEEK - I don't need to go through an ordeal where I need to be reminded ahead of time that you're not going to leave me. This is bad timing!" But I felt incredibly pressured, so I changed part of my "moving battle plan" and worked on different things that were on the list - things that I needed to be the person to do. And sure enough - two days later I was on my way to the hospital for what ended up being four days. (So, I'm not sure why you posted that as your status update - but God used it to prepare me for what was about to happen, and to get my rear in gear in terms of getting ready to move. So, thank you!)</div><div><div><br /></div><div>I last sent an update one week ago today (Friday). Aaron and I were driving to Pittsburgh for me to be admitted because I understood that I had septicemia again. I had sent out an email begging for prayers for our family. Apparently THEY WORKED! The blood cultures that were taken in Hershey showed that there was a REAL bacteria (not just a contaminate) in the blood in my hickman catheter. I think the doctors said it was gram negative staff (whatever that means). Well, when we got to the ER in Pittsburgh, two more complete sets (8 bottles) of blood cultures were taken right away. An hour or so later the docs finally decided which antibiotic to start me on, and I was admitted and sent to a real room. I ended up being admitted for four days, and ALL blood cultures that were taken in Pittsburgh were NEGATIVE! Real bacteria don't just disappear!! And I wasn't started on antibiotics until AFTER the blood cultures were taken. The docs were so confused that they did repeat cultures to make sure a couple days after I was admitted! ALL BLOOD CULTURES THAT WERE TAKEN IN PITTSBURGH WERE NEGATIVE. There's the power of prayer for ya!</div><div><br /></div><div>So, if all the Pittsburgh blood work said I wasn't sick, then why was I stuck at the hospital for four days? Excellent question! I asked every doctor I saw that very question! The bacteria found in Hershey was a real one, and the doctors couldn't agree what to do. I looked healthy - I felt healthy (by the time I arrived in Pittsburgh though definitely not when I was at home) - but if there really was bacteria hiding somewhere in my hickman and they sent me home, I could have gotten deathly ill. So, the doctors had a rough time agreeing what to do. (And I felt like a child who was grounded for something she didn't do.)</div><div><br /></div><div>Finally what was decided was that the possibly (?) infected hickman catheter would come out. That way if there was bacteria hiding in it, they'd be removed and problem solved. But I need the hickman to get my constant iv, so they needed to decide how to administer my drug instead. So, a PICC line was put in my arm. It's like a semi-permanent iv that goes in my right upper arm. The inside part also goes straight to my heart just like the hickman did. For some reason, the type of medicine I get can't go in just any vein, it has to go straight to my heart. But this solution posed some problems of it's own. If my hickman was really infected, and a PICC is replacing it, and those nasty bacteria were also at the end point (in my heart), then when the PICC goes in, it'd immediately be infected. Decisions - decisions. Technically since this new method can also get infected, it was decided by the powers-that-be that it could only be a temporary solution.</div><div><br /></div><div>So, on Wednesday, November 11 I'm being readmitted for several days. I will start getting my medicine sub-cutaneously in my stomach area (kinda like an insulin pump). A little iv tube will be inserted into the fatty layer (which I have plenty of!) and my body will absorb the medicine. Since no iv tubes will be going in my veins anymore - no chance of blood infections anymore. Problem solved! There's just one catch. There's a 50-50 chance of me having excruciating site pain. I've met two ladies who get Remodulin this way (from my Hershey support group). One of them has the pain, and the other doesn't - just like the research shows - 50-50 chance. I'm praying that I fall into the "no pain" category!</div><div><br /></div><div>So, once all of this was decided and worked out I was finally released late Tuesday afternoon (just in time for rush-hour traffic), and my mother (who had driven out earlier that day) drove me home to Mechanicsburg. Twenty-three hours after arriving home from my four day hospital stay the moving truck arrived. And praise God (thanks to my burning desire to be productive the weeks before hospital and lots of help from friends) we were completely ready for the truck! So, the truck was completely packed in 4.5 hours on Wednesday (thanks to 11 sweaty guys). On Thursday we finished up a few errands and by noon were on the road driving to Pittsburgh. Tonight we're staying in a hotel (which is free thanks to Aaron traveling for work so much recently). And at 9 am this morning (Friday) we're buying our new house! Originally the doctors wanted me readmitted on MONDAY to switch to the sub-q - - I just laughed at them. So, finally we agreed to give me a week and a half to at least find the toothpaste, etc. at the new house.</div><div><br /></div><div>So - thanks for ALL the prayers! THEY WORKED! The bacteria "disappeared" miraculously. I was discharged in time to move. I got a doctor's note saying I can't lift anything for two weeks (because of the new PICC and hickman that was removed). And I am being given another week and a half to "settle in" before my next hospital stay.</div><div><br /></div><div>Well, I'm gonna send this email now. And hopefully that's why I was wide awake in the wee hours of the morning, and I can get back to sleep now.</div><div><br /></div><div>Blessings.</div><div><br /></div><div>~ Julia</div></div></div></div></div></span>Julia Feitnerhttp://www.blogger.com/profile/11981970764141155286noreply@blogger.com2tag:blogger.com,1999:blog-4923343001204547774.post-7926000259346878912009-10-23T17:31:00.000-04:002009-10-23T17:32:12.106-04:00#51 - The Good, The Bad & The Nervous<span class="Apple-style-span" style="font-family: arial, sans-serif; font-size: 13px; border-collapse: collapse; "><div><i><b>Date Sent: Fri, Oct 23, 2009 at 5:28 PM</b></i></div><div><br /></div><div>I know it’s been ages since I’ve sent an update.<span> </span>Life has been busy for the Feitners.<span> </span>Aaron has spent the past 8 weeks working (Monday thru Thursday) in Pittsburgh, and then coming home for the weekends.<span> </span>We sold our house, and bought one just north of Pittsburgh outside of Cranberry Township.<span> </span>Well, we’ve almost bought it – technically that happens this coming Friday (October 30<sup>th</sup>).<span> </span>I’ve been busy being a single-mom and packing for our upcoming move (with the help of friends).<span> </span>I’ve been so busy with daily life, that I’ve wondered if I was going to find time to send one more update before the move, apparently I am, ‘cause here it is!</div><div><div><p class="MsoNormal"><span style="text-decoration: underline; ">THE GOOD:</span></p><p class="MsoNormal">As you know, I’m on a continuous iv that helps me breathe, and I also take a pill twice a day.<span> </span>Well, that pill can cause severe liver damage, so I have to get blood work once a month (before they ship the next bottle of pills) to check and see how my liver’s doing.<span> </span>For the past several months I’ve gotten a call from my doctor’s office letting me know that those results were moving closer and closer to the “bad numbers.”<span> </span>Each month he decided to “keep watching me.”<span> </span>Last month when I got that same phone call, I was asked if I drink tea.<span> </span>Well, yes I do – I love tea, especially when the weather turns chilly!<span> </span>Apparently for some people tea (hot, cold, green, fruit, etc.) can affect their liver.<span> </span>So, I was instructed to quit ALL tea and see if that helped keep me on the pill a bit longer.<span> </span>Today I received a call from the doctor’s office and was told that BOTH of the liver enzymes are ABSOLUTELY NORMAL again!!!<span> </span>YAY!!!<span> </span>So, still no tea for me, but at least my liver’s not being damaged (this month, anyway).<span> </span>Only God knows if my liver’s “healed” because of His hand, or because of quitting tea, but either way, PRAISE GOD!</p><p class="MsoNormal"><span style="text-decoration: underline; ">THE BAD:</span></p><p class="MsoNormal">I’ve not been feeling well lately – had all the symptoms of the flu.<span> </span>I know that my compromised lungs make me a “high risk” flu patient, so on Wednesday I called my pulmonologist to see what I should be on the look out for just in case.<span> </span>After listening to me, the nurse spoke to my doctor, and he decided to do some precautionary blood cultures in case I have something bacterial that needs an antibiotic.<span> </span>So, I went in on Thursday for the blood work, and got a call this afternoon with the first set of results.<span> </span>Apparently I do NOT have the flu.<span> </span>I have a cold. So, that’s good.<span> </span>Oh yeah, and I also have SEPTICIMIA … again.<span> </span>My mother came to town on Wednesday night (when I told her that I was sick and needed help with the kids), so she’s watching the boys at my house, while Aaron and I are driving back to the ER in Pittsburgh (he’s driving as I type).<span> </span>We’re still dialoguing with the doctor about what to do long-term to stop these infections (most likely a medicine change).<span> </span>But for the short term, they’ve got to get rid of this infection (which most likely means pulling this hickman catheter out).<span> </span>He told me to expect to be there a couple days (yeah – um – I’ve been through this once already).<span> </span>I’m REALLY hoping and praying that this time around I’m not delirious, or vomiting constantly, or, or, or, OR….<span> </span>Sigh.<span> </span>We could all use LOTS of prayers right now.<span> </span></p><p class="MsoNormal">I really try not to be a complainer, but the last time I had this, the only way to describe it is PURE HELL.<span> </span>I’m praying that since they caught it earlier it won’t be quite as rough this time - delirium and not being able to open my eyes or move is <i>quite</i> unpleasant.<span> </span>I tried to smooth over how bad it was in my previous emails, but frankly put – septicemia KILLS.<span> </span>The research I did said it was like a 50% mortality rate for the category into which I fall.<span> </span>I’ve survived it once so far, and God’s promised me that I won’t die till I’m healed from Pulmonary Hypertension, but that sure doesn’t make the experience any less difficult.<span> </span>So, please keep ALL of us in your prayers extra this week.</p><p class="MsoNormal"><span style="text-decoration: underline; ">THE NERVOUS:</span></p><p class="MsoNormal">Like I mentioned earlier, we’re supposed to settle on our new house next Friday.<span> </span>This means that we’re packing the huge moving truck next Wednesday, and driving to Pittsburgh next Thursday.<span> </span>Based on my previous encounter with septicemia, there’s NO WAY I’m going to be in ANY form to do ANYTHING regarding the move.<span> </span>I might even still be in the hospital!<span> </span>I know that the move can happen without any more input from me, but I feel responsible for making sure everything runs smoothly.<span> </span>“Managing” falls more under my strengths than Aaron’s.<span> </span>I already know I won’t be lifting even ONE box, but it’d at least be nice if I could be part of it. (Here’s a quick ‘thanks’ for all of the people who’ve offered to help us both here and in Pittsburgh!)</p><p class="MsoNormal">My biggest fear about moving to Pittsburgh is that we’ll be so far from our support network, and it looks like I’m going to need support immediately.<span> </span>Guess God’s wanting to make sure I’m completely dependent on Him once again.<span> </span>Ummm… I get the point.<span> </span>HE should be my chief support network, not just the people around us.</p><p class="MsoNormal">So, thank you for all of your prayers for our family.<span> </span>We ALL need strength, prayers, and love right now.<span> </span>I know God will work all of this out – it’s not a surprise to Him.<span> </span>But, it sure is a surprise to US.</p><p class="MsoNormal">Peace to you and us.</p><p class="MsoNormal">Julia</p></div></div></span>Julia Feitnerhttp://www.blogger.com/profile/11981970764141155286noreply@blogger.com1tag:blogger.com,1999:blog-4923343001204547774.post-37098678913660906962009-08-16T21:52:00.000-04:002009-08-16T21:53:14.594-04:00#50 - A Drive-Thru Visit<div> <span style="font-weight: bold; font-style: italic;">Date Sent: Sun, Aug 16, 2009 at 9:50 PM</span><br /></div><br />It's amazing how sometimes when you think that you just can't take any more ... when you're eyes are all puffy and red from crying your heart out ... when you're discouraged by the seemingly endless set-backs ... when it looks like daybreak will never come - <i>sometimes</i> God says "Okay, let's make this one easier." I'm SO GRATEFUL that was His decision this past Friday! I typed and emailed update #49 on the car-ride to Pittsburgh. We were headed into the ER at Presby, and I was staring down the barrel of yet ANOTHER hospital stay. I was very discouraged - discouraged that the local (excellent!) big hospital didn't take my problem seriously - discouraged that all the elements were in place for me to get septicemia again - discouraged that I was about to separated from my family again - discouraged that I was about to be stuck alone in a hospital - and discouraged at the impending pain of several repeat procedures that I had just gone through less than two weeks before.<br /><br />We arrived at the ER, and I took a deep breath in and out. I wiped one final tear from my eye, and having mustered up every bit of strength (as little as it was) I could find within me, I walked bravely through the doors (so grateful that Aaron was by my side). I felt a little better within the first 60 seconds - the person who signed me in had me come straight back to be looked at (I didn't even have to sit in the waiting room). They immediately explained (before even looking at it), that if the cuff really did come out, then I would need a new one - no ifs, no ands or buts. It was SO REASSURING that we were no longer the only ones concerned about the potential gravity of the situation. It wasn't an emergency (yet), but could have become life-threatening at any moment. If it slipped out more and the medicine wasn't going in properly - I wouldn't be able to breathe. If bacteria got in the (now gaping) hole in my chest - septicemia would set in again. And FINALLY - twenty-four hours after the cuff pulled out - people were scrambling to fix it! <br /><br />After a quick x-ray, and very short (very fast) visits by a couple doctors, the ball was set in motion. About 30 minutes after walking in the door a doctor (GOD, BLESS HIM!) decided he'd stay late and replace it immediately - AS AN OUTPATIENT!!! So, I was whisked upstairs while Aaron scrambled to find a hotel and get oxygen delivered to it so I could sleep in a non-hospital bed that night.<br /><br />Since I've had so many catheters (hickman and IJ), so many swanns, so many heart caths - the doctor decided not to put me to sleep. He looked at the scars on my neck and chest and said that I've been through so much that I should be able to handle it. (This also saved time, so he didn't need to track down anesthesiologists, etc.) I was shown a couple different catheters, and allowed to pick which one I wanted, and then was given a quick run-down on what would happen. He was basically going to just pull out the catheter and put in another one along the same track. ... And then it was MY turn to talk about the process. Since it was decided NOT to give me a temporary line for the Remodulin infusion, I was "simply" going to turn off my pump for the procedure. [I will interject here that if I hadn't switched from Flolan to Remodulin in May, this would NOT have been possible - l would have died on the table because the medicine wears off so quickly. So - here's yet another reason God had me make the change to Remodulin!] So, since none of the doctors or technicians in the room knew about Remodulin (other than recognizing the name), it was up to ME to walk THEM through the change-over process. So, I told them what size syringes (etc.) were needed and what kind of time frame I could go without medicine with me staying out of the ICU. I talked about what needed to happen before he started the procedure, and what needed to happen after he was done with his part. Once everything was together we started - and I turned off my pump. I think that act alone raised my blood pressure and pulse, and lowered my oxygen sats. It's been thoroughly ingrained in me that I DO NOT DISCONNECT FROM THIS PUMP. But I had peace - so I did it.<br /><br />About 30 minutes later he was finished with his part (I'll spare you the details) and it was my turn. I walked them (three extra people came in the room for this part!) through the process of priming the new catheter that was in me with the correct amount of medicine (a little too much could have "coded me" and sent me to the ICU - that happened once a year ago on accident at that same hospital!). Everything went smoothly, and they were all impressed at my medical knowledge (including the right terminology of some pretty technical things related to the process). My response was "I don't know a lot about a lot, but I do know a lot about me." Once the pump was running again, I sat up and was wheeled back to the ER where Aaron was sitting (and looking SO INCREDIBLY NERVOUS). But there I was - alive, smiling, talking, walking, laughing, and the medicine transition had obviously gone well. (After all, I was back in the ER, not the ICU!)<br /><br />So, the Attending doctor of the ER phoned the on-duty doctor who works with my specialist to let him know that it was all done, and make sure it was okay for me to go home. His response was "They took care of it TONIGHT?!!? I can't believe they squeezed her in!" (The surgery schedule had been over-booked ALL DAY!) But he gave his blessing, and I was discharged! If I wasn't so sore from the procedure, I think I would have danced a jig on the way out the door! I felt SO INCREDIBLY RELIEVED that the danger was over. Aaron was smiling from ear to ear! And we were both starving! So - we got dinner, and checked into the hotel, and just after 10:30 the oxygen was delivered. Sigh - I could sleep! WE could sleep! The next morning we got some personal business done, and after lunch left to drive back home. What was supposed to be a six day ordeal took only about 24 hours! PRAISE GOD!!! <br /><br />I'm still recovering. I'm still sore. I still haven't gotten a legitimate shower. BUT IT'S FIXED AND I'M HOME!!!! The doctor who performed the procedure told me that (because of lots of details about what happened), it's going to take AT LEAST A MONTH for this to completely heal. But at least it's FIXED!!! The original one was (to quote Aaron) "a hatchet job." The doctor explained to me why it came out, and what he was doing differently to make sure this one stayed in. This one still has the same inconvenient placement, but looks SO MUCH BETTER, AND SO MUCH MORE SECURE. I'm still grieving the ugliness of the "hatchet job" scars. But I keep trying to remind myself that scars are reminders of God's HEALING, not just of painful wounds.<br /><br />Thank you SO VERY MUCH for all of the prayers, emails, cards, phone calls, Facebook posts.... God was gracious to me once again. This time what could have - SHOULD HAVE - been a long-drawn out painful ordeal, ended up being a drive-thru ER visit. I've been so blessed!<br /><br />A very relieved,<br /><br />~ JuliaJulia Feitnerhttp://www.blogger.com/profile/11981970764141155286noreply@blogger.com0tag:blogger.com,1999:blog-4923343001204547774.post-23358465322209064652009-08-14T14:01:00.002-04:002009-08-14T14:05:18.369-04:00#49 - Hi-Ho, Hi-Ho, It's Back to the Hospital I Go<span class="Apple-style-span" style="font-family:arial, sans-serif;font-size:100%;"><span class="Apple-style-span" style="border-collapse: collapse; font-size: 13px;"><span class="Apple-style-span" style="font-size: medium;"><b><i><span class="Apple-style-span" style="font-family:georgia;">Date Sent: Fri, Aug 14, 2009 at 1:58 PM</span></i></b></span><div><div><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="font-family:georgia;"><br /></span></span></div><div class="im" style="color: rgb(102, 102, 102); "><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="color:#000000;"><span class="Apple-style-span" style="font-family:georgia;">It was on Monday, August 3rd that a new hickman catheter was placed going into my heart. Aaron and I were both disappointed in how/where it was placed - both from an aesthetical standpoint, as well as practical (my bra strap is directly on top of it). Out of frustration, I cried out to God "I hate this one! I just wish it could be changed!" OOPS!!!! It looks like God is answering that prayer....</span></span></span><div><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="color:#000000;"><span class="Apple-style-span" style="font-family:georgia;"><br /></span></span></span></div><div><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="color:#000000;"><span class="Apple-style-span" style="font-family:georgia;">Last evening when I was taking a shower, my towel caught on the catheter and gave it a little tug. There's a cuff that's just under the skin that's part of the catheter. This cuff has two main functions. One - my skin attaches to it, eventually forming a very tight seal, which keeps nasty little bacteria out. Two - it provides stability and helps the catheter stay in place. Well, that entire cuff pulled out. Not. Good. So, Aaron and I took a trip to the ER at the Hershey Medical Center. The doctors on duty didn't know what to do about it, so they took an x-ray and saw that I was still getting medicine, and sent me home. They said to call the main hospital operator in the morning (today) and see if she could connect me with someone who might know about these types of catheters. So, we obeyed. This morning we were told that patients aren't allowed to set up their own appointment, and that the doctor I saw in the ER should have known that. So, feeling quite overwhelmed, I started to cry on the phone. The nurse took pity on me and said that she'd talk to her doctor and see what he wanted to do. He looked at the x-ray and said I'm still getting medicine, so it will be okay.</span></span></span></div><div><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="color:#000000;"><span class="Apple-style-span" style="font-family:georgia;"><br /></span></span></span></div><div><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="color:#000000;"><span class="Apple-style-span" style="font-family:georgia;">Now, VERY OVERWHELMED, I called the personal nurse of my doctor in Pittsburgh, and cried my heart out to her. Her response was, "THEY SAID WHAT?!!?" Within a matter of 15 minutes, she had spoken with three doctors there, reserved me a bed, checked the operating room schedule, and called me back ('cause I accidentally hung up on her), and asked me "how soon can you get here?" Sigh. At least we're not the only ones concerned about this! She even offered me an ambulance if I wasn't up to Aaron driving me out there. I was asked a battery of questions (to make sure that I'm not showing symptoms of not getting medicine or of septicemia setting in ALREADY!). PRAISE GOD I FEEL OKAY - JUST NERVOUS.</span></span></span></div><div><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="color:#000000;"><span class="Apple-style-span" style="font-family:georgia;"><br /></span></span></span></div><div><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="color:#000000;"><span class="Apple-style-span" style="font-family:georgia;">So - Alex is spending the next several days with a dear, wonderful, amazing family. Harrison is at our house with my mother. House showings have started to pick up again, so my dear mother also gets the fabulous responsibility of keeping it immaculate with a toddler who's prematurely hit the "wonderful" two's. Aaron is driving like the wind to Pittsburgh, and I am sitting in the passenger seat typing away. Since it's Friday afternoon, I'm supposed to go to the ER (at UPMC Presby), and that way they'll start the process faster than if I was just admitted right before the weekend started. My doctor is off this week, but I know the ones that are on duty, and they've been caught up to speed with my situation. So, at least I feel confident that I'll be taken care of.</span></span></span></div><div><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="color:#000000;"><span class="Apple-style-span" style="font-family:georgia;"><br /></span></span></span></div><div><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="color:#000000;"><span class="Apple-style-span" style="font-family:georgia;">All of that said - I'M SICK OF HOSPITALS - I'M SICK OF SURGERIES - I'M SICK OF FORCED SEPARATION FROM MY FAMILY - I'M SICK OF NOT BEING ALLOWED SHOWERS - I'M SICK OF IVS - AND I'M SICK OF BEING SICK! ........ However - I can breathe - I can walk - I can play on the computer - I don't have any oxygen on right now - I have childcare for my kids - I have medicine available to me - I have good insurance - and I have a fabulous support structure. I'M ALIVE - so I shouldn't complain.</span></span></span></div><div><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="color:#000000;"><span class="Apple-style-span" style="font-family:georgia;"><br /></span></span></span></div><div><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="color:#000000;"><span class="Apple-style-span" style="font-family:georgia;">It looks like I'll be admitted until at least Monday or Tuesday. Aaron has meetings in Pittsburgh Monday thru Wednesday, so I'll be there at least that long. So, once again we covet your prayers for strength, wisdom for the medical personnel, peace for our kids, physical safety for me, and for God to work out something GOOD through this ordeal. One thing's certain - I'm learning NOT to complain so much to Him - He keeps answering my prayers - even the ones I probably didn't really mean. So, that being said, "Dear God - we feel overwhelmed. Please sell our house and get that off of our very full plate." **SMILE**<br /><br /></span></span></span></div><div><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="color:#000000;"><span class="Apple-style-span" style="font-family:georgia;">Thank you for your prayers! Catch ya on the flip side....</span></span></span></div><div><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="color:#000000;"><span class="Apple-style-span" style="font-family:georgia;"><br /></span></span></span></div><div><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="color:#000000;"><span class="Apple-style-span" style="font-family:georgia;">~ Julia</span></span></span></div></div></div></span></span>Julia Feitnerhttp://www.blogger.com/profile/11981970764141155286noreply@blogger.com0tag:blogger.com,1999:blog-4923343001204547774.post-20127228465177238512009-08-11T18:49:00.001-04:002009-08-11T18:49:54.296-04:00#48 - Wheelchair Rides<span style="font-weight: bold; font-style: italic;">Date Sent: Tue, Aug 11, 2009 at 6:48 PM</span><br /><br />I was discharged last Monday evening, just in time to get some gentle hugs from the boys before they went to bed. Alex was SO EXCITED when Aaron told him that it was time to go to the hospital to bring me home - and that Alex could come along! The ICU is nowhere for an impressionable 4 year-old to visit, so he waited in the waiting room with my mother while Aaron and the nurse brought me out. I'll always treasure the "MOMMY!" and huge sigh of relief he let out when he was able to run over to my wheelchair and give me a huge hug! He didn't mind that I was still on oxygen. He was just so relieved to see me - he didn't want to let go. Alex climbed up on my lap, and the nurse wheeled both of us out to the car. We ALL had huge smiles on our faces - even the nurse, who said it's been years since she got to wheel an excited little boy too.<br /> <br />It wasn't until I was ready to be discharged that the docs finally told me how serious my condition was - though I knew that septicemia can kill. I had thought that part of what I was experiencing was because of the battery of drugs that were being administered to me. But alas, no - it was the septicemia running its course. God has spared my life once again. He truly meant what He promised me - that I'm not gonna die as long as I have Pulmonary Hypertension - I will be healed first. But between you and me, I'd be very happy not to have any more "close calls." Most people don't go to the ER just because they've had a fever for 24 hours. But if God hadn't impressed Aaron and me that I needed to go in ... I probably wouldn't be here today.<br /> <br />I've spent the past eight days at home regaining my strength. The first night home I barely made it up the stairs for bed. Today I'm finally really starting to feel like myself - almost. I haven't done any cleaning, laundry, dishes, or bathed the kids yet. But I feel like maybe I can pick up at least one of those duties. It's been a huge blessing that my mother postponed her trip to Zambia to help us (once again!).<br /><br />I just wanted to send a quick "thank you" to all of you for praying for us during my recent hospitalization. God's brought us through, and I'm slowly regaining my strength. God has truly turned our "mourning into gladness!" (Jeremiah 31:13b)<br /> <br />~ JuliaJulia Feitnerhttp://www.blogger.com/profile/11981970764141155286noreply@blogger.com0tag:blogger.com,1999:blog-4923343001204547774.post-64008136212464938842009-08-02T22:00:00.000-04:002009-08-02T22:01:31.577-04:00#47 - Chocolate, Chocolate Everywhere, But Not a Bite to Eat<div> <span style="font-weight: bold; font-style: italic;">Date Sent: Sun, Aug 2, 2009 at 9:57 PM</span><br /></div><br />As I type this, I'm sitting (quite comfortably) in a reclining chair in Hershey, Pennsylvania - self proclaimed "Chocolate Capital of the World!!!" For those of you who know me on Facebook, you're already aware what it is that I'm doing here. For the rest, though, let me tell you a story.<br /> <br />On Sunday two weeks ago (July 19th) the boys and I went to spend a week at my mother's (while Aaron worked). As the week progressed I slowly began to feel more and more tired, finally culminating in me spending Tuesday (July 28th) mostly in bed (back at our house). We had several theories as to why it was I was tired, and finally (this morning) were given a definite answer - I had an blood infection (septicemia), and the group of nasty little bacteria had latched onto my hickman catheter (the one going in my heart). <br /> <br />On Wednesday the 29th, after two days of an inexplicable fever, and a sudden bout of nausea and dizziness, we decided it was time for a trip to the ER. So, a lovely neighbor lady (thank you!) came over to watch the boys. A few hours later I was put on oxygen and admitted to the Medical ICU at the Hershey Medical Center. At that point I was admitted to the ICU not because of the severity of my symptoms, but rather because my continual iv infusion requires a more "specialized" approach to care. Since this is one ICU I have NOT visited before, I was more than happy to oblige, so as to help round-out my soon-to-be-official-connoisseur-degree in "ICUs of Western and Central Pennsylvania."<br /> <br />Thursday was worse than miserable, and Friday was even worse than that. Since I was running such a high fever, and had uncontrollable nausea and **ahem ahem**, it was decided by some powers that be, that I would feel better drugged up on anti-nausea medicines. Yeah - um - NO! I'd so much rather puke up my spleen than be so doped up that even though I'm totally conscious, I am unable to open my eyes or move my hand for hours on end. Simply. Unpleasant. This went on for two days until I began to turn the corner and was coherent enough to put up a big enough fight to stop the druggings. (In the hospital's defense, I was throwing up A LOT, and I do understand that they REALLY NEEDED to stop that....)<br /> <br />When I was in the ER, I was started on some pretty heavy-duty antibiotics (one of which is most likely the cause of the **ahem ahem**). I was actually put on THREE antibiotics - one specifically for possible Swine Flu (which has since been ruled out). It turns out that one of the original ones I was put on was the RIGHT ONE for the type of bacteria growing, so Praise the Lord for that blessing! I am now only taking one antibiotic, and that's been switched from an iv to a pill form since my stomach has finally settled.<br /><br />In addition to the antibiotic running its course, what helped me finally turn the corner, was that on Friday (just before "closing time") my infected hickman catheter was removed. Aaron and I were both QUITE NERVOUS about the process, because we had been through one change over of medicine way back when (in a different hospital) when I was given a bolus (too much) of medicine, and "coded" and was sent back to the ICU. But, God gave the resident performing most of the procedure (who was a former anesthesiologist - and VERY familiar with veins) a steady hand and a clear head to do the math calculations required for correctly priming the temporary tube that's going in through my neck. The procedures were almost painless, and didn't take too long - both of which made me extra grateful for God's hand though all of these experiences.<br /><br />After spending the weekend regaining strength (and working those nasty anti-nausea drugs out of my system), today I finally sat in a chair (twice now!), washed my hair at the sink with a nurse's assistance, and have been taken off the full-face mask of high flow oxygen, and am now on 4 liters through a nasal cannula. I'm really hoping that another day or two in the hospital will find me breathing regular room air during the day, and only using oxygen to sleep (like happens at home). But, as with everything else, God has that in His more than capable hands!<br /><br />Sometime tomorrow I'm supposed to be taken down to the operating room, and a new (bacteria-free) hickman catheter will be put into my heart. And then after a round of x-rays to make sure it's placed correctly, the meds will be switched from going in through my neck to the hickman. We're praying for another seamless changeover! It hasn't been determined yet how long I will need to be observed after that takes place, until I can be discharged (or even IF I'll have enough strength right afterward). So, the current hope is that I'll go home on Tuesday, though no one's making any kind of promises. They ARE all trying to get me out of here before our house sells, though. **HUGE SMILE**<br /><br />Pulmonary Hypertension doesn't go away (that is until God fulfills His promise and heals me - but only He knows when that will be!). ALL the doctors here are ultra impressed that I've had the hickman catheter A WHOLE EIGHTEEN MONTHS without this happening before! My mind says "eighteen months compared to my whole lifetime, that's me going through this A LOT OF TIMES!" Not a pleasant outlook! I would be VERY content NOT to have this happen again EVER!!! So, I'm praying that this is one experience for which God decides "a little goes a long way!"<br /><br />Anyway - you've probably forgotten your curiosity about this update's title, and what in the world it has to do with septicemia. I've been trapped in Hershey, PA for five days now, and still HAVEN'T had ANY Hershey's chocolate! I hope that if you ever come to visit, the town treats you a little better! **SMILE**<br /><br />Thank you for your continued prayers as I go through the rest of this hospital ordeal, and then once I'm home and continue to recover. Also, thank you to those who stepped in during this time, and helped out around the house and with the boys. Thank you also to those who offered, but haven't had a chance to yet.<br /><br />~ JuliaJulia Feitnerhttp://www.blogger.com/profile/11981970764141155286noreply@blogger.com0tag:blogger.com,1999:blog-4923343001204547774.post-12343649981091462082009-07-20T17:45:00.005-04:002009-07-22T21:23:33.891-04:00#46 - Fork in our Path<strong><em>Date Sent: Mon, Jul 20, 2009 at 5:43 PM</em></strong><br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1H25x-BNmda5abLLwekGryrd1Zd36KMijUZnBPS2-JZ1SthfxFeMKJPwAIlxsbazXDRFcquA2EDM8Lqo_fYT71EH3dI3pMoUnO3WrS78BGp-N6I81yHIsvNRyRrDPf8LUO6tFHYoDwtfG/s1600-h/fork+in+the+road4.jpg"></a>Have you ever felt that you should do something, but it didn't really make total logical sense? I mean the decision wasn't a bad one, but it seemed like "odd" timing. Or if it didn't work out just <a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrYdDX8RWuXvQYQhR_bjSb3aiVhxxa1RlUBDr2lQYCfM29xgYqUfbQpeIMIPyIftrCAJ83ex2BDfJiRGQ0vzM4OG7MDz_B4iEeqXWkPKNc9nAtqEQpdpNNISoSDphib9pSt8aPbCKrF6Wl/s1600-h/fork+in+the+road.jpg"></a>right, then you'd experience a huge financial set-back. But, despite all the reasons for you not to do it, it still felt that you were supposed to....<br /><br />Well, Aaron and I are in the middle of that sort of situation. We are facing one of those make or break, fork in the road points in our lives. We both think we know which path to take, we've just been waiting for the right (God's) timing. We've been knowingly waiting for eight months already. In early November Aaron brought up for discussion the possibility of a change in our family's life. At first I reacted the same way I have the last hundred times he's brought it up over the past two or so years. Out of frustration he finally said, "Just pray about it!" So, I did.<br /><br />I prayed. And prayed. And prayed. And before long this time my heart began to change. Within a couple weeks I was actually excited about the possibility, and had complete peace even though it seemed impossible (financially, physically (energy-wise), etc.). But the PEACE was undeniable. Finally we brought up the possibility with our parents. And then after several more months told a few friends and asked them to join us in prayer. Finally - after SEVEN MONTHS of being convinced that despite the craziness of it, this IS the path that God has for us, we were given our final confirmation last week.<br /><br />This past week Aaron was offered (and ACCEPTED) a job in Cranberry, PA (just north of Pittsburgh). It's doing the same thing for Verizon Wireless that he currently does - just in a new region with different management and co-workers. Cranberry is four hours from where we live now. It's 1.5 hours from our closest family (my mother), and it's really far from our friends, our church, and our support network. But it's only about 20 minutes (without traffic) from my doctor.<br /><br />The economy is down. Our investments are worth less. Our townhouse is in a new development that is still building new houses. Why would someone buy our "used" house for the same price as they could buy a "new" one just down the street? Unless God works a miracle (which I'm living proof is possible) - then we'll lose money on this house - a lot of money. This move makes absolutely NO LOGICAL SENSE. But we both feel God leading us to Pittsburgh. And so we will go. When God told Abraham to pack up everything he owned and move his family to a place that God WILL (note the future tense) show him, that didn't make sense either. But Abraham obeyed, and was blessed for it.<br /><br />Aaron's job begins September 1. Our house has now been listed. We are unwilling to buy a new house until this one sells. Of course our hope is that our house will sell, and we'll settle on a new house out there before then. But if not, until God sells our house and we move, Aaron will be staying at a hotel in Cranberry during the work week (which the company has generously offered to pay for), and I will be here alone with the boys. That prospect does not appeal to any of us. But, we are confident that God will work it out in His timing. If it takes longer to sell the house (rather than shorter), then it means that we have more time to save up money for the move.<br /><br />So ........ if you know anyone in the Mechanicsburg, PA area who's looking for a 3 bedroom, 2.5 bath townhouse that's in still new condition - please send them our way! You can check it out <a style="FONT-WEIGHT: bold" href="http://www.realtor.com/realestateandhomes-detail/370-Melbourne-Lane_Mechanicsburg_PA_17055_1110740377#Detail">HERE</a>. Our next couple weeks are going to stay VERY busy - trying to sell the house, continuing the relocating process, etc. Please keep us in your thoughts and prayers. Oh - and ...<br /><br /><div align="right"><br /><strong><em><span style="font-size:130%;">Congratulations, Darling.</span></em></strong></div><div align="right"><strong><em><span style="font-size:130%;">I'm so proud of you!</span></em></strong> </div>Julia Feitnerhttp://www.blogger.com/profile/11981970764141155286noreply@blogger.com0tag:blogger.com,1999:blog-4923343001204547774.post-91341937813408185622009-07-10T21:39:00.001-04:002009-07-10T21:41:07.288-04:00#45 - ALL THINGS ... not just SOME<div> <span style="font-weight: bold; font-style: italic;">Date Sent: Fri, Jul 10, 2009 at 9:38 PM</span><br /></div><br /><b>And we know that ALL THINGS work together for GOOD to those who love God, to those who are called according to His purpose. Romans 8:28.</b><br /> <br />As I've slowly been increased on Remodulin (the iv drug I was switched to back in May), I moved from using one particular strength vial of the medicine, to a stronger vial. This was done so that as the dosage was increased, the cassette with mixed medicine would still last 48 hours. So, as I'm increased, sometimes the amount of actual medicine that's mixed with saline increases, and sometimes just the speed of the medicine being pumped into me changes. At some point a month or so ago it was necessary for me to start using a stronger concentration when mixing. When that happened, there was still one unopened vial of the smaller strength left. I never got around to throwing it away.<br /> <br />On this past Tuesday night when it was time to mix a new cassette, it was also necessary to open a new vial of Remodulin (one vial usually lasts just over a week). Aaron had forgotten that there were two different types in the box of extra supplies, and accidentally grabbed the wrong one. Tuesday night was also when I was supposed to increase from a dosage of 33 ng/kilo/min to 34 ng/kilo/min. So, I expected to feel "weird" for a day or so. But this time, I wasn't feeling more normal by Thursday, and commented to Aaron that I was still having a hard time breathing when I exerted myself (like going up stairs). Usually I notice that I have a harder time breathing for a day or so as my body adjusts, but this time around, it wasn't back to normal by day two.<br /> <br />Thursday night was my turn to mix, and as I pulled the opened vial of Remodulin out of the fridge, I suddenly realized WHY the last two days it had been so much more difficult for me to breathe. I saw that the paper on the vial was the wrong color. I immediately realized that I didn't have enough medicine - by a LONG SHOT! Aaron and I sat around the table in total shock and disbelief. After a couple minutes (around 11:30 pm) our heads stopped spinning, and we phoned the 24-hour number we were given in case we have any questions/problems. This definitely qualified! The man who answered listened to my explanation, and then put me on hold while he phoned the on-call pharmacist (who "just so happened" to be the one that always takes care of me). Her response was "that's too big of a decrease for me to be the one to decide what to do. Phone your doctor's office. If you can't reach them, then go to the Emergency Room. Oh, and you were at 33 ng, and ARE NOW AT FOURTEEN." After hanging up with them, I took a long, deep breath.<br /> <br />Before I told Aaron what they said, I asked him to compare how I was acting / how productive / how out-of-breath I've been the past two days with how I was when I was first discharged from the hospital having been switched from Flolan to Remodulin. He thought and thought. Finally he said that I'm stronger now. I have more stamina, and more physical energy. I'm definitely VERY out-of-breath, but it seems like I'm stronger than I was then. I smiled through my nervous tears because I agreed, but hadn't wanted to bias his response. I then reminded him that when I was discharged I was at TWENTY ng, and that the Pharmacist said that I'm currently at FOURTEEN. It was so late, and I had already spent two days at this dosage, so I called the doctor's personal nurse and left a voicemail that she would get first thing in the morning, and then mixed the new cassette at the same strength I was currently on. And then we cried. And prayed. And went to bed. <br /> <br />First thing this morning I received a phone call from my assigned nurse at the Pharmacy who was quite concerned for me. She asked me LOTS of questions: Have I been lightheaded? No. Have I been dizzy? No. Have I passed out? No. Have I been waking up at night because I can't breathe? No. Have I been unable to sleep at all because I can't breathe? No. Has it been difficult to wake me up in the morning because my oxygen saturation levels are too low? No. .... I have less motivation to get projects done around the house, but they've still been done. I've been taking more rest breaks. When I get to the top of the stairs I need to stand there and catch my breath before I continue down the hall. But that's it. Don't get me wrong - not being able to catch my breath is horrible. But I am functioning! The nurse was shocked, and a bit relieved that I'm not dying over here since I was suddenly getting LESS THAN HALF of the strength I was.<br /> <br />Later this morning my doctor's nurse (who I left the message for) phoned to make sure she had all the details before she asked the doctor what he wanted to do. She asked me similar questions. This afternoon she phoned me back with his instructions. Apparently his first response (after hearing how I am and am not doing) was for me to just switch back to 33 ng in one fell swoop. The nurse asked him if that is REALLY what he wanted. His response was "well, it took her two days to realize what was wrong, so it must not have been bad enough for her to be concerned. So, she'll be okay. She's a tough cookie, been through lots of these increases before. She'll be fine." The nurse advocated for me and asked if I couldn't at least two it in two steps so it's a little more tolerable. He agreed. Tonight (Friday) I'm supposed to increase from 14 to 24 ng. And then Sunday from 24 to 34 ng! YIKES!!! It's important to note that I've NEVER done an increase of MORE THAN ONE NG - AND THERE'S NEVER BEEN LESS THAN FOUR DAYS BETWEEN. I'm about to increase TEN ng, and then after 48 hours increase another TEN!<br /> <br />In God's providence, today's Friday, and Aaron will be here all weekend. I'll be doing the first increase soon after I finish sending this email, and then I plan to spend the next day (or two if necessary) in bed. And then after Sunday night's increase, two friends are opening their houses to the boys for Monday and Tuesday while Aaron's at work so I can recuperate without the noise/stress of young kids who don't understand why Mommy needs it to be quiet. Please pray for me especially hard during these next several days while my body adjusts. The side effects of a "normal" increase are unpleasant. I'm not looking forward to this.<br /> <br />But we're assured that "ALL THINGS (NOT JUST SOME) work together for GOOD to those who love God, to those who are called according to His purpose". I have no idea why this happened. I mean, I KNOW WHY - it's because I never threw out the old vial. But, I don't know what "good" will come from this. All I can see right now is upcoming uncomfortableness. But my God is bigger than that! I praise Him for His faithfulness over these past several days. I praise Him that I haven't passed out - or worse! I praise Him that I've been able to function (although much slower). And I praise Him for the currently-unseen way that this will work together for GOOD in my life.<br /> <br />Thank you for your prayers as I transition back!<br /><br />~ JuliaJulia Feitnerhttp://www.blogger.com/profile/11981970764141155286noreply@blogger.com0tag:blogger.com,1999:blog-4923343001204547774.post-91794284511148209542009-06-25T11:31:00.000-04:002009-06-25T11:32:14.149-04:00#44 - The heart of the matter<div> <span style="font-weight: bold; font-style: italic;">Date Sent: Thu, Jun 25, 2009 at 11:28 AM</span><br /><br /></div>Earlier this month I had a check-up appointment with my doctor in Pittsburgh. It was scheduled for approx one month after the iv med change, because he wanted to see how I'm doing on the new drug. It had been sixteen months since my last right heart cath (which tells the exact blood pressure in the lungs). And even though I had echos done in between, those only estimate the pressure, so it was time for another right heart cath so the doc could have an exact number. The cath was scheduled for Tuesday morning, and then I'd see the doc in the afternoon and he'd discuss the results with me. So, Aaron and I drove out to Pittsburgh, hoping he would say that I don't need to do any more increases.<br /> <br />The morning of the procedure came, and I checked in, and was sent to a holding area where they started an iv, and got me ready for the procedure. It was supposed to begin at 11:30, so I wasn't allowed anything to eat after midnight or drink after 6 am (and of course I didn't wake up that early just for some apple juice). At 1:30 I was still waiting - and getting hungry. Finally they wheeled me back to the operating room and got started. I think I've had three or four of these done before (all when I was admitted in 2008), and while they're not pleasant, they've been nothing to write home about. <i><br /><br /></i><u>This one was different</u><i>.</i> Just about everything that could go wrong (except me bleeding out and dying), did go wrong. The local antiseptic wasn't strong enough. The injected numbing stuff wasn't placed where it needed to have been. The first attempt didn't work, so they had to pull out and start all over again. They were having such a hard time getting it in that they were pushing so hard on my neck that I literally couldn't breathe. They overshot by 15 cm and had to pull back. They must have touched the wrong part of the heart, because I suddenly thought my heart would beat right out of my chest, and my rhythm got all out of whack. ..... It was 45 minutes of sheer hell. Three separate times the doc who was doing the procedure asked if I had been sedated because I was unbelievably quiet and still. I hadn't been sedated, I was just pulling every reserve I could find to just survive it. It was ... intense. Generally 24 hours after the procedure, you're back to normal. It took me two weeks!<br /> <br />But finally they finished and I was wheeled back to the holding room. On the less than two minute ride I could hold back no longer, and finally started to cry. Within those two minutes I was drenched in sweat - even the gown and sheet covering me were dripping wet. I was so nauseous that all I could do was pray in all earnesty that I wouldn't puke. They had gone in through my jugular, and the force of vomiting would have reopened the new blood clot, and I could have bled to death. I was terrified. The nurse paged the doc who did the procedure, and he showed up "speed walking" and stuck around watching me until the nausea passed. Every nurse in the holding area kept walking past my cubicle to see if they needed to jump in and help. Finally God brought me through it and I started to feel better. I've since been told that those were symptoms of what my heart was doing wrong (I forget the specific medical name). But, praise God, He calmed my heart, and I didn't code.<br /><br />Because everything had taken so long, I ended up missing my scheduled appointment with my specialist. But he was good enough to come to me instead. After the afternoon's ordeals, I was so relieved when he poked his head into my cubicle. It's amazing how if you have good rapport with your doctor, just his very presence can calm you. He brought with him the results of the cath. The blood pressure in my lungs are the same as when I was discharged in February of 2008 - just over 60. (For someone my age, anything above about 20 is considered Pulmonary Hypertension. When I was first diagnosed they were 98. But after being put on Flolan, when I was discharged I think they were 65.) He said that was what he expected. He said that they're never going to come down lower than that. [But God has promised me that they will return to normal - so I'm choosing to believe my God who I cannot see over my doctor who I can.]<br /><br />He quickly moved on. He said, "Now these numbers. These are what's exciting!" And then he stopped and smiled at me, waiting for my response. I had absolutely no idea what those numbers meant. So finally he remembered that and continued. "You were in heart failure. With PH, what actually kills you is your heart, because it becomes so damaged that it can't function anymore. You were in heart failure!!" Again he paused, and again I was clueless. Finally he finished his thought: "<u><b>YOUR HEART IS TOTALLY HEALTHY NORMAL! If I didn't know anything about you, and just looked at these numbers... Julia, your heart is perfect! Julia, this changes your prognosis. I have no idea when you're going to die. It's the heart that kills you, and your heart is fine</b><b>!</b></u>" And then I finally understood why he was beaming from ear to ear! PRAISE GOD - I'M HALFWAY HEALED!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! He said, "Julia, people don't come out of heart failure. The heart can get a bit better, but they don't just come out of heart failure!" And I thought "People aren't healed/cured of PH either, but that's gonna happen one day too!" ... So - I guess the hell of the right heart cath was worth it to hear that amazing news! <br /><br />Do you remember me mentioning in a previous email about the x-ray that was taken recently, and my heart was almost normal size again? Apparently it's now finished shrinking. In February of 2008 it was 2.5 times the size it was supposed to be. In 16 months God has completely healed my heart (physically and spiritually).<br /><br />Do you remember me mentioning in a previous email about the women who surrounded me at Tuesday Morning Bible Study the week before I was admitted for the medicine change, and how suddenly after that I could walk through the mall without wanting to pass out from oxygen deprivation? Aaron's convinced that my heart finished healing during that prayer. So, once again, thank you ladies for your prayers!<br /><br />I'm supposed to do a couple more increases - to get me to 35ng. <u>At that point I'll stop, and try it out, and let <b>him</b> know if <b>I</b> want to go to 40</u> or not. I think it won't be necessary, but we'll wait and see. Maybe at 40 I'll be able to run a marathon - just kidding. I'm currently at 31, and have had two extremely, insanely, unbelievably productive weeks while taking care of my kids all alone. I haven't been able to do the amount of work I've been able to do these past two weeks in YEARS! I keep taking "rest breaks" during the day - but they're more because they're now a habit, not because I think I'm gonna keel over from exhaustion. <br /><br />Thank you for praying me this far! AND PRAISE GOD FOR BRINGING ME SO FAR SO (relatively) FAST!!!!! After all "The Lord will sustain him on his sickbed and restore him from his bed of illness." (Psalm 41:3) And He's doing just that!<br /><br />An ecstatic,<br /><br />JuliaJulia Feitnerhttp://www.blogger.com/profile/11981970764141155286noreply@blogger.com2tag:blogger.com,1999:blog-4923343001204547774.post-53392922122036365332009-05-04T22:50:00.001-04:002009-05-04T22:54:48.393-04:00#43 - Step by step<meta equiv="Content-Type" content="text/html; charset=utf-8"><meta name="ProgId" content="Word.Document"><meta name="Generator" content="Microsoft Word 12"><meta name="Originator" content="Microsoft Word 12"><link style="font-family: georgia;" rel="File-List" href="file:///C:%5CUsers%5CJulia%5CAppData%5CLocal%5CTemp%5Cmsohtmlclip1%5C01%5Cclip_filelist.xml"><link style="font-family: georgia;" rel="themeData" href="file:///C:%5CUsers%5CJulia%5CAppData%5CLocal%5CTemp%5Cmsohtmlclip1%5C01%5Cclip_themedata.thmx"><link style="font-family: georgia;" rel="colorSchemeMapping" href="file:///C:%5CUsers%5CJulia%5CAppData%5CLocal%5CTemp%5Cmsohtmlclip1%5C01%5Cclip_colorschememapping.xml"><!--[if 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mso-footer-margin:.5in; mso-paper-source:0;} div.Section1 {page:Section1;} --> </style><!--[if gte mso 10]> <style> /* Style Definitions */ table.MsoNormalTable {mso-style-name:"Table Normal"; mso-tstyle-rowband-size:0; mso-tstyle-colband-size:0; mso-style-noshow:yes; mso-style-priority:99; mso-style-qformat:yes; mso-style-parent:""; mso-padding-alt:0in 5.4pt 0in 5.4pt; mso-para-margin-top:0in; mso-para-margin-right:0in; mso-para-margin-bottom:10.0pt; mso-para-margin-left:0in; line-height:115%; mso-pagination:widow-orphan; font-size:11.0pt; font-family:"Calibri","sans-serif"; mso-ascii-font-family:Calibri; mso-ascii-theme-font:minor-latin; mso-fareast-font-family:"Times New Roman"; mso-fareast-theme-font:minor-fareast; mso-hansi-font-family:Calibri; mso-hansi-theme-font:minor-latin;} </style> <![endif]--> <p class="MsoNormal" style="margin-bottom: 0.0001pt; line-height: normal; font-family: georgia;font-family:georgia;"><span style="font-size:100%;"><span style="font-weight: bold; font-style: italic;">Date Sent: Mon, May 4, 2009 at 10:49 PM</span><o:p></o:p></span></p> <p style="font-family: georgia;font-family:georgia;" class="MsoNormal" ><span style="font-size:100%;">
<br />When I was admitted to Presby last week I was shoved in an empty room (somewhere on the 7th floor). I didn't recognize anyone, and felt nervous because the nurses weren't even pronouncing my medicine correctly. Almost 11 hours after being admitted I was woken up and told that they were moving me down to a room on 3rd. I prayed that it was the same unit I was on last year, but couldn't remember which specific one it was. As I sat in the wheelchair and was pushed to my new room, a song popped into my just-woken-up-and-still-very-groggy mind. At first it was just the first line, but as I sang that one line over and over in my head the rest of the lyrics eventually came to mind also.
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<br />Step by step, we're moving forward
<br />Little by little, taking ground
<br />Every prayer a powerful weapon
<br />Strongholds come tumbling down
<br />and down and down and down
<br />
<br />We want to see Jesus lifted high
<br />A banner that flies across the land
<br />That all men might see the truth and know
<br />He is the way to heaven
<br />
<br />I decided to claim that song as the prayer of my heart for the entire hospital stay. For those of you who faithfully followed my updates on Facebook and responded with your encouraging words, you'll probably recognize the first line as the beginning of one of my status updates. Before I was admitted I decided (for many reasons, spoken and unspoken) that I would claim healing while I was in the hospital. Either way I would still praise God for how far He's brought me - even the possibility of not having to change ice packs every couple hours was worthy of a huge praise! I was so confident that God would heal me while I was there, that honestly, when I was discharged and still on a continual iv medicine I was a bit bummed. But I praised God for what I DID see happen - the switch to Remodulin went fairly smoothly, I got a chance to reconnect with some previous caretakers, and our daily lives were now much easier from a medicine perspective. I was discouraged that I was more out-of-breath on this new medicine, and my oxygen saturation was now dropping when I walked, when I didn't think happened that before the change. But the doctor told me to increase the strength once or twice a week, and that I'd soon be just fine.
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<br />I mentioned in my previous email that my specialist had an extra spring in his step each day when he saw me - this is something that we've never noticed before. He always looks incredibly tired and like the weight of the world is on his shoulders. And rightfully so - he's responsible for the care of incredibly sick patients - we met him when I was in the ICU and no longer able to breathe without a machine doing it for me. Someone's life or death hangs in the balance for him every day - I'd look tired and stressed too! Before I was discharged last week, he told us that he was "very, very pleased" with how I was doing. I took that comment with a grain of salt. I was a bit disappointed that God didn't decide to "miraculously" heal me while I was there - I was certain that He would. But I was discharged still having pulmonary hypertension, and still having a tube coming out of my chest.
<br />
<br />Tonight I attended a meeting, and ran into the doctor who originally diagnosed me 14 months ago - the one who (rightfully so) doubted that Harrison and I would both live. I asked him a couple questions about my new medicine, and during the course of conversation he clarified some things for me that I thought but wasn't certain of. I AM CURRENTLY ON LESS THAN HALF THE AMOUNT OF MEDICINE I WAS ON A WEEK AGO!!! This means that I am on less medicine than I was on when I was originally discharged in March of 2008! I am doing a few tiny increases over the course of the next couple weeks, but even after that is done, I will STILL BE ON (MAYBE) HALF the amount of medicine I was on last week! I am more out-of-breath than I was a week ago, but not THAT much more. Based on how I feel tonight, I think I'll probably only have to increase two more times to get me back to where I was a week ago - that will put me at HALF THE AMOUNT OF MEDICINE! No wonder the doctor was "very, very pleased"!!!!!
<br />
<br />God DID heal me while I was in the hospital - STEP BY STEP! I haven't experienced a "full and complete" healing yet - but this past week He brought me gigantic leap closer! You may wonder how I know that this healing took place while I was in the hospital. Let me explain. With how "sick" I am, if I suddenly stop this medicine, I'll die. With how potent the medicine is, if I have a sudden healing, and am still on it, I'll die. Based on how "good" I felt last week, the only time the majority of that "new" healing could have happened was when the medicine was switched! So.....
<br />
<br />I went into the hospital expecting God to heal me. I left disappointed. Shame on me. GOD DID HEAL ME WHILE I WAS IN THE HOSPITAL! Only a miracle could explain how I am doing so incredibly well on so little medicine! THANK YOU to all of you who faithfully (and frantically) prayed for me while I was in the hospital last week! You helped pray a miracle into happening!
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<br />~ Julia</span></p> Julia Feitnerhttp://www.blogger.com/profile/11981970764141155286noreply@blogger.com0tag:blogger.com,1999:blog-4923343001204547774.post-16809138202183882072009-05-03T16:54:00.000-04:002009-05-03T16:55:04.187-04:00#42 - So long, farewell ...<div> <span style="font-weight: bold; font-style: italic;">Date Sent: Sun, May 3, 2009 at 4:51 PM</span><br /></div><br />... auf Wiedersehen, adieu! Adieu, adieu, to yieu and yieu and yieu ...<br /><br />Goodbye Flolan. Goodbye rash on my arms, chest, and back! Goodbye red face and hands - at least for the time-being.<br /><br />I was admitted to UPMC Presby on Tuesday at noon. The rest of that day was spent doing various tests (ekg, chest x-rays, etc.), and just resting! Overnight I was finally moved from whatever bed was open in the hospital, to the step-down cardiac unit I "visited" during last year's hospital stay. Wednesday morning was spent with the staff deciding the logistics of how to transition me to the new drug, and finally the attending doctor pulled out his trump card and said that they'd just unscrew the Flolan, and screw on the iv tube of the Remodulin. This switch happened a few minutes before noon on Wednesday - and start to finish only took two minutes. Not long after I was put back on oxygen for a couple hours while my body adjusted and built up a "therapeutic dose" of the new drug in my bloodstream. Both drugs act similarly in the body - they help dilate the blood vessels of my lungs to help blood pump easier through them, and in turn help me breathe easier. However the dosage for each drug is different, and dosing is more of an "art than a science" for both of them. As such, we've been told different estimates of how much Flolan equals how much Remodulin. But no matter which is more accurate for my body (each person reacts slightly differently to these two drugs) - I am currently on a MUCH SMALLER DOSE of Remodulin than I was of Flolan - possibly up to 1/3 or 1/2 less! This is both good and not-so-good. Let me explain. <br /><br /><u>THE GOOD:</u> it is a MIRACLE that I am functioning as well as I am on as little as I am (currently it's 23 ng of Remodulin)! Based on how much I AM able to do right now, there's no way that I will ever be increased to the amount of Remodulin I MIGHT HAVE BEEN ON right now. If the on-duty (and very knowledgeable) doctor didn't make the decision to put me on identical numeric dose of Remodulin (and let my personal doctor decide after I was discharged how much I will increase), then I wouldn't know that God's healed/healing me enough that I can function this well (relatively speaking) on this little!<br /><br /><u>THE NOT-SO-GOOD:</u> I am impatient, and annoyed that I'm not able to carry Harrison up the stairs right now, or do other strenuous activities. Actually I should be using oxygen at the moment to walk up the steps or to walk any kind of distance (like shopping or going to church). Also, if it's harder for me to breathe, then my slightly-less dilated blood vessels are putting stress on my ALMOST TOTALLY HEALED heart.<br /><br />The Friday before I was admitted (and I was visiting my mother in Wheeling) I went to the doctor there to get an antibiotic just in case the "cold" I had needed one. I didn't want to have to wait around a couple days in the hospital for my "cold" to clear up if the doctor decided I needed to do a round of antibiotics first. A girlfriend went with me to get the antibiotic - and while there it was decided that I should have a chest x-ray done to make sure my lungs were clear. I mentioned to the doctor (who I had never gone to before, but she was the one on duty) that I already know that the right side of my heart is VERY enlarged, so that wouldn't be "something new." After reading the x-ray, the doctor commented that it really isn't that bad. I asked what that meant, and she led the two of us down the hall to take a look at the x-ray. Fourteen months ago the right side of my heart was 2.5 times LARGER than it should have been (and it's supposed to be SMALLER than the left). When she showed me the image I didn't recognize it (in a good way)! I asked her to show me where the heart is supposed to "stop," and on the screen it was MAYBE 1/2 centimeter beyond the line she traced with her fingernail! PRAISE GOD - MY HEART IS ALMOST TOTALLY RE-REMODELED TO THE CORRECT SIZE!!!!!!! This is something that NO doctor could promise would EVER happen!!!!!<br /><br />So - back to the medicine transition this past week. They switched ivs just before noon on Wednesday. By 3:00 I was feeling more "normal" and off of the oxygen. Also by 3:00 we noticed that the "Flolan rash" (which was actually an allergic reaction to the medicine) that had been on my arms, chest, and back for probably 10+ months was totally gone! By 5:00 that evening I noticed that the permanent redness on my left leg from the cold ice packs was also gone! And sometime between 3 and 5 the redness left my face and hands! I was told that the redness will probably return as I increase the Remodulin (and that it's a sign the medicine is doing its job), but for the time-being, I'm SO GLAD to be able to see my skin a nice "peachy" color rather than red! Wednesday evening and overnight I struggled with very low (for me) blood pressure, and more than one person has told me that they felt that God woke them up to pray for me during the night. Thank you to those people for those prayers! I was much improved by Thursday morning, and the doctors decided to discharge me by noon on Thursday. After taking care of some personal business in the area on Thursday, and a nice "date" at the Olive Garden in Cranberry, we made the trek home, and got here around 10pm. Alex was allowed to stay up till we got home, and was so much relieved to see that "Mommy looked okay." After he went to bed I struggled (with oxygen on) to make it up the steps for bed. But after scooting up backwards, on my rear, one step at a time, I finally succeeded. A couple days later I am quite a bit stronger, but that kind of exertion still requires oxygen.<br /><br />My personal PH doctor wasn't scheduled to be on duty at the hospital while I was there (his partner managed the increase), but still stopped in to visit each day - and we spent the visits talking about interesting personal (non-medical) topics. Seeing how "happy/pleased/energized" he was each visit showed us in a tangible way that he's incredibly enthusiastic about my progress! I've been given permission by him to "increase" the dosage once or twice a week - however I see fit. I'm hoping to push through and do it as frequently as possible so that I'll regain my strength/stamina sooner rather than later. My mother has moved back in with us for the month, and we're hoping that by the end of May we'll be able to function as a family unit without her staying here. But we covet your prayers especially during this month as I try to regain my strength. Thank you to everyone who prayed before, during, and now after my hospitalization last week! The change was SO MUCH SMOOTHER than it was "supposed to" have been! I am still confident that "he who began a good work in [me] will carry it on to completion until the day of Christ Jesus." (Philippians 1:6b)<br /><br />~ JuliaJulia Feitnerhttp://www.blogger.com/profile/11981970764141155286noreply@blogger.com0tag:blogger.com,1999:blog-4923343001204547774.post-74102624925495002642009-04-20T14:51:00.000-04:002009-04-20T14:52:07.623-04:00#41 - Round Two<span style="font-weight: bold; font-style: italic;">Date Sent: Mon, Apr 20, 2009 at 2:49 PM</span><br /><br />I began a new pill this past December, and was told if that "didn't take care" of my tiredness (which it did for several months), then I'd need to be readmitted to the ICU and switch to a different iv medication, which hopefully I'd "respond better to." At first the pill did wonders, and I was even able to walk a mile on the treadmill 5 days a week for most of January. But then the tiredness came back. The last two emails I sent mentioned that I was getting more and more tired. This past Thursday I finally worked up enough courage (after having a good cry and praying with our Pastor's wife - long story), and told the doctor that I'm now willing to change iv medicines. I had spoken with his office several weeks ago (about something else), and mentioned that I had seen a change (for the worse) in my energy level. It's been unanimously decided that it's time for this change to take place - no more waiting.<br /><br />We will be headed to Wheeling this coming weekend for the funeral of a family friend, then will drive back to our house on Sunday after church. Mother will drive to our house either late Sunday night or on Monday - she'll stay here with the boys while we're in Pittsburgh. And then Monday evening Aaron and I will be headed to Pittsburgh. I'll be admitted to UPMC Presbyterian (the same hospital I was in last year) on Tuesday, and they'll begin the change-over process. To my understanding I'll be in the ICU - due to the intense, potentially critical nature of the drug transition. They're hoping it will be an "uneventful" transition, but there's always the possibility that it won't be. They don't know how long it will take - I was told to expect probably "12-18 intense hours." And then they'll keep me for several days to make sure I'm tolerating it well, for some of the intense side effects to be managed a bit better, and to teach us how to use this new drug. They're hoping that I'll be home by the weekend - but they aren't promising me anything. It will be administered to me the same way my Flolan currently is - via a Hickman catheter straight into my heart. <br /> <br />The new drug is called Remodulin, and there are LOTS of good things about changing to it. It does NOT need to be kept cold - so no more waking up in the middle of the night to change ice packs, or worrying during the summer if my ice packs are melting extra fast because of the heat. We do not need to mix it from scratch (we currently have to do that every 24 hours with Flolan, and this process takes an average of 30 minutes). We'll only have to change the medicine cartridge every 2-3 days rather than every 24 hours, because it doesn't lose potency like Flolan does. There's a chance I'll get to use a smaller "pump," which means MAYBE I won't have to wear this huge black bag around my torso anymore. We won't know though, till I'm admitted - there is a 50/50 chance that it'll be the same pump we're using now - we'll have to wait and see. And if something "goes wrong," we'll have 2-3 hours to fix the problem before a potential heart attack, rather than just 5 minutes!<br /> <br />We are CHOOSING to view this change as a good thing. It will certainly be much easier! Before I was discharged in March of 2008, we were told that this change was possible "down the road." Aaron and the Doctor have been really encouraging it for at least the last 6 months. But, up until now what I had was "working," and had become a security-blanket of sorts. I knew what to expect, and could finally read my body to know what different feelings/sensations meant - both good and bad. It would be a bit more encouraging to me if I was changing out of choice rather than necessity ... but I've had almost 14 months to choose that, and I haven't yet. So, maybe this God's way of nudging me to change. Only God knows the reason(s) that this change is taking place. But I am now (finally) confident that it IS His will, and I am secure in that. It's taken me until this past week for that assurance, and so it wasn't until last week that I was willing to change to Remodulin. I am a bit nervous about going back into the same ICU I was in last year, and "facing" those memories in a more "in-your-face" kind of way. But we need to deal with our past completely so we can move on rather than letting it being a stone dragging us down, don't we?<br /> <br />My hope is that this transition will bring back my energy, but we'll see. I've been preparing myself (and the house) in case I'm "out-of-service" for a couple weeks/months. No one knows how I'll respond, or how long it will take for me to be up-and-at-'em again. Please join us in praying for physical safety during the hospital stay next week, and for us as we make this huge change in our lives - that it will be a smooth transition.<br /> <br />Thank you.<br />~ JuliaJulia Feitnerhttp://www.blogger.com/profile/11981970764141155286noreply@blogger.com1tag:blogger.com,1999:blog-4923343001204547774.post-8804334509312045262009-04-14T15:47:00.001-04:002009-04-19T10:58:11.957-04:00#40 - Peace Like a River<div> <span style="font-style: italic; font-weight: bold;">Date Sent: Tue, Apr 14, 2009 at 3:45 PM</span><br /><br /></div>It's now been more than five weeks since my last email. So much has happened in our lives - so much busyness, so much productivity, so much fun, but more importantly - so much growth! My last email ended with a request that you join me in praying for PEACE in the midst of some intense emotional turmoil. Well, God has been good - and it has been "given to [me]. A good measure, pressed down, shaken together and running over! (Luke 6:38b) I have gotten slightly "worse" physically since then. I now think that I have a bit TOO LITTLE medicine, not a bit too much. But we'll see. One day at a time. God is giving me strength for today, and sending people alongside me to help when it's needed.<br /><br />At Bible Study this morning, a girlfriend and I were discussing if it is necessary (or not) to receive the Baptism of the Holy Spirit (which neither of us have so far), to experience true, deep, inexplicable peace. I (not that I claim to be an expert in this topic!) - I think not. When we first accept Jesus as Lord and Savior of our lives, the Holy Spirit comes in and resides in us. Over the past thirteen months I have had days/weeks/months of inexplicable peace despite the horrible circumstances. It has not been constant, but each time I prayed for peace - without fail God answered that prayer! Even though in my humanness I have had some rock bottom emotional times, God was waiting with his arms filled with peace ready to immerse me in it - as soon as I asked. Last month I was letting my thoughts run rampant like a run-away-train, but as soon as I prayed (and you joined me) for peace - it was there again.<br /><br />Two songs have had special meaning to me lately. One is an old hymn - "It is well with my soul." Here's the first two verses:<br /><br />When peace like a river, attendeth my way,<br />When sorrows, like sea billows roll;<br /> Whatever my lot, Thou hast taught me to say,<br />It is well, it is well with my soul.<br /><br />Though Satan should buffet, though trials should come,<br />Let this blest assurance control,<br />That Christ has regarded my helpless estate,<br />And hath shed his own blood for my soul.<br /><br />This hymn was written by Horatio Spafford, after several traumatic events in his life, including the death of his only son in 1871, and the Great Chicago Fire which ruined him financially. In 1873 his wife and four daughters sailed across the Atlantic (he planned to join them later), and the ship sunk, killing all of his remaining children. His wife survived, and sent him the now famous telegram "Saved alone." Shortly afterward, he traveled to join his wife in Europe, and as his ship passed where his daughters drowned, he penned the lyrics on a napkin.<br /><br />I've suffered nothing in comparison to so many people! If Horatio Spafford could experience that type of inexplicable peace while dealing with such deep, intense pain, then certainly God could - and will - make it available to me as well! He experienced "peace like a river" - not like a still pond, or a trickling stream. It was peace like a ROARING RIVER that had the power to move him from one point (maybe the point of pain, or despair, or sheer emotional exhaustion) to a different place (perhaps one of hope, contentment, or forgiveness). All he had to do was sit in the boat and stop rowing <i>against</i> the current, and God's peace would do all the work! We all have pain of some sort in our lives because there's sin in the world. But God - <i>my God</i> - is a loving, generous, forgiving God. James 4:2b says, "You do not have, because you do not ask God." Obviously this doesn't mean that God's just another Santa Claus - but all too often we live in defeat because we don't ask God for strength ... or peace!<br /><br />In the second verse, to "buffet" means " to strike, as with the hand or fist; to strike against or push repeatedly; to contend against; battle." Satan's entire goal is to do battle with God Almighty - since it's obvious that God's gonna win that one, he settles (for the moment, at least), doing battle with God's children - us! Certainly the most sure way to get me angered is to hurt one of my children - this is Satan's tactic. All too often it works. I can understand when someone who hasn't experienced what Jesus has to offer, walks around and lives a life of defeat, unforgiveness, bitterness and even hopelessness. But, as a Christian, each of us have God's access to His forgiveness, love, peace, goodness, gentleness, etc! We just have to ask!<br /><br />The second song, which I actually heard for the very first time last week, is "Finally Free" by Nichole Nordeman. I will let it speak for itself:<br /><br /><span style="font-family: courier new,courier,monospace; font-size: 12px;" id="slly"></span>No chain is strong enough<br />No choice is wrong enough<br />No mountain high enough<br />That He cannot climb<br /><br />No shadow dark enough<br />No night is black enough<br />No road is lost enough<br />That He can't find<br /><br />And if the Son has set us free<br />Then we must be, free indeed<br />Let the chains fall away, starting today<br />Everything has changed<br />I'm finally free<br /><br />No pain is deep enough<br />No heart could bleed enough<br />Nothing but Jesus' love<br />Can make a way<br /><br />And if the Son has set us free<br />Then we must be, free indeed<br />Let the chains fall away, starting today<br />Everything has changed<br />I'm finally free<br /><br /><br />Peace be with you.<br />~ JuliaJulia Feitnerhttp://www.blogger.com/profile/11981970764141155286noreply@blogger.com0tag:blogger.com,1999:blog-4923343001204547774.post-41747954775510565572009-03-08T23:32:00.001-04:002009-03-09T11:43:52.380-04:00#39 - Peace, Be Still<div> <span style="font-weight: bold; font-style: italic;">Date Sent: Sun, Mar 8, 2009 at 11:30 PM</span><br /><br /></div>One Thursday evening, several months ago I was supposed to meet for prayer with the Women's Pastor and the wife of our Lead Pastor, but I ended up being almost 30 minutes late. Why? Because I was out in the parking lot considering committing suicide. I had gotten so discouraged... so overwhelmed... I felt so horrible physically that I couldn't tolerate it any longer. Finally I got out of the car and went inside. To be honest, what stopped me (besides God) was what people might have said afterward "How sad, she was just steps away from the church building, and a PRAYER meeting. Why didn't she just go inside and ask someone for help and to pray for her?" When I ended up leaving that evening (after praying with these women of God) my problems hadn't gone away. Some of those thoughts lingered. But instead of me wanting to throw in the towel, I was more determined to find a way for me to feel physically better.<br /> <br />If my memory serves me correctly, I phoned the doctor's office the next day, and he decreased the strength of one of the pills I took (which wasn't "supposed to need to be done."). Within 24 hours I began to feel better. When I met with the two ladies that next Thursday they both commented on the huge change in my physical appearance and demeanor. I wasn't "all better," and still didn't feel "good." But God had answered my prayers. I had come back from the edge and back to the point that I could at least tolerate it. That night as I prayed with them I silently pleaded with God not to let me get to that point of desperation again.<br /> <br />So, now you know the back story. Fast forward several months, and it's now February 2009. I suddenly began to show symptoms that my body's getting slightly too much medicine - I'm slightly "over-dilated." A couple weeks go by and it's now the beginning of March and more side effects have appeared. They're not intolerable yet, and not enough that my doctor would do anything about them. But they're there - hanging over me - constantly reminding me of that Thursday evening not so long ago. Most of them are just things I feel, but the main one that other people can see is a slight flushing to my face. For several days I've been pleading with God again - begging that His will ISN'T for me to feel as horrible as I did before. I'm not sure if I'd have the strength to go through it again.<br /> <br />This morning Aaron stayed home with Alex (who has pink eye), and I went to church with Harrison. On the way there I was pleading with God again. (My kids are going to grow up thinking their Momma's crazy 'cause she constantly talks with God as if He's standing beside her. Please note that I don't pray out loud about things the kids shouldn't be hearing!) I parked the car, and as I pushed the stroller toward the door I gave one final plea: "God, why am I getting red again? I know you give me strength for each new day, but I won't be able to survive that again. Dear, God, WHY?" Immediately the outdoor speakers (which were broadcasting the service that had already started) began to play "my song"...<i>How great is our God! - Sing with me - How great is our God! - And all will see how great, - How great is our God.</i> I started to tear up. Once again God used that song to answer the cry of my heart.<br /> <br />So, I went inside, took Harrison to the nursery, and phoned Aaron to tell him what wonderful thing just happened. Next came Sunday School and then a girlfriend surprised me and met me for second service (she was visiting from out-of-town with other friends). Today was communion. During the quiet time surrounding it my thoughts turned inward rather than just what Christ did for me on the cross. I thought about how "by his wounds we are healed" (Isaiah 53:5). I want to be healed. Once again I was asking God why I'm turning red again, why suddenly I'm getting all these unpleasant side effects. I was begging Him not to let me get to the horrible low point I had been at before - emotionally or physically. And then He spoke ... "PEACE. BE STILL." Immediately the quiet music being performed by the musicians up front changed to that same song ...<i>How great is our God!</i> Here are more of the lyrics... <i>Age to age He stands. - And time is in His hands. - Beginning and the End. - Beginning and the End.</i><br /><br />Once again I was crying. Why is it that in my humanity I keep wanting God to speed this thing up and just "make everything all better?" My mind knows that God's timing is always perfect, and He doesn't waste pain or suffering. But in my weakness I periodically just want this to be done. I don't know why it is I'm getting these side effects - it could be because I'm improving or because I'm getting sicker. But God reminded me that the future is in His more than capable hands.<br /><br />In Mark 4:39, Jesus "...arose, and rebuked the wind, and said unto the sea, Peace, be still. And the wind ceased, and there was a great calm." (KJV) All day today I thought I was the boat being rocked by the stormy wind and rough seas. But it just dawned on me that <u><b>I</b></u> was the person told that phrase today. Apparently <u><b>I'm part of the storm causing the boat to rock</b></u>. It follows that if I am still (and stop whining to God and working myself up with the possible unpleasant upcoming turns in the road) then there will be a great calm. Please join me in praying that I can follow God's direction: "Peace, Be Still."<br /><br />~ JuliaJulia Feitnerhttp://www.blogger.com/profile/11981970764141155286noreply@blogger.com2tag:blogger.com,1999:blog-4923343001204547774.post-31837483951612428772009-03-03T16:21:00.000-05:002009-03-03T16:22:18.797-05:00#38 - God of the Inconsequentials<div class="im"> <span style="font-weight: bold; font-style: italic;">Date Sent: Tue, Mar 3, 2009 at 4:20 PM</span><br /></div><br />I've had several answers to prayer regarding my health/situation recently, and I've considered emailing about them. But I haven't (until now). Sometimes I find myself thinking that "the small stuff" is too inconsequential to pester people about. But I'm so glad that my God is the God of the inconsequentials!<br /> <br /><b><u>Item #1</u></b> - A couple days after I wrote the "Manna" email, I received a letter in the mail saying that there had been a change with our insurance. My continual iv medicine costs $126,000/year, and the pill I take twice a day costs just under $59,000/year. Our co-pay had been $50 for every three months. That was a HUGE miracle in and of itself! Well, this letter said that the company who supplied the medicine was now considered "out-of-network", and we had 90 days to pick a new pharmacy or we'd pay the whole cost out-of-pocket. Problem #1 - I received the letter in the mail 30 days into this 90 day time period - we now had only 60 days. Problem #2 - this is the ONLY pharmacy in the ENTIRE country who supplies both of these drugs. Problem #3 - we were having friends over a few hours later for Aaron's birthday party, and I still had things to do - this was NOT the "most convenient" time to stress about this. So, I took my own advice and decided that God (who owns the cattle on a thousand hills - Psalm 50:10), and provided the Israelites with manna, and has taken care of us so far wasn't about to abandon us now. I prayed about it and went on with the day's activities.<br /> <br />Well, the next day was Saturday, so I had to wait till Monday to phone the insurance company. Monday came and went, and finally Tuesday I started making phone calls. I felt like I was blindly being led around in a circle - no one had any concrete answers for me. So, I "gave up" and put it back in God's hands, and I waited to see how He'd take care of this. One week to the day after I received the letter saying my meds were no longer covered by insurance, I received another letter. This one basically said, "sorry - our mistake - ignore the last letter." Apparently what had happened was the pharmacy (Accredo) had bought out another smaller pharmacy, and that smaller one was "out-of-network". In retrospect, one week isn't that long to be wondering how we were going to pay for $185,000/year worth of medicine. But when you're going through it - it's a VERY long week! But through that experience, I was reminded to "cast all your anxiety on him because he cares for you." (I Peter 5:7) After all, if you're going to pray, why worry? And if you're going to worry, why pray?<br /> <br /><u><b>Item #2</b></u> - As I already mentioned, our co-pay has been $50 for each three months. In January, when one of my medicines arrived in the mail, included was a bill for $125. In the busyness of life, I forgot about it, and when February's medicines arrived, the bill was now $250, and there was a note saying that since my account was delinquent I would receive no more medicine till it was paid in full. Well, I thought this was quite ...odd (considering what my co-pay was), so I started making phone calls. Apparently the insurance company changed some of their policies, and as of January 1, 2009 generics are the same co-pay they were the year before, but brand-name drugs are 3% of the cost up to a maximum of $125. (Well, in our case, praise God for a maximum - paying 3% could bankrupt us!) We weren't told about this change - it just happened. Well, there are NO generics for the two drugs I use - I tried to "argue" my way out of the co-pay, but to no avail. So, I figured God would take care of this somehow. And somehow he did! Our tax refund this year was big enough that we payed off a large bill we had. We had been paying MORE than $125/month on that bill, and now we didn't need to any more. God provided the money for our increased co-pay, but it wasn't how we thought He would. God always "thinks outside the box," doesn't He!?!<br /> <br /><b><u>Item #3 </u></b>- Well, this one wasn't so inconsequential. Early Sunday morning a couple weeks ago Alex and I were downstairs (Aaron and Harrison were still upstairs asleep) - and suddenly my pump started beeping this loud, obnoxious, never-ending, make-your-adrenaline-pump BEEP! It was warning me that it had stopped pumping medicine. (If you remember, this has only happened one other time in the past year). The doctors told me that even 5 minutes without this medicine could make me die on the spot - last time I survived the 6 minutes it took to get medicine pumping again, but Aaron was there to help me. Since there was no Aaron this time to help, I was extra nervous. And since Alex was there it was extra important that I didn't let my sheer terror show as I tried to figure out what was wrong, and what to do about it. So, as I pushed buttons and tried to get it started again I frantically prayed, "Dear God, please don't let me die alone in front of my son!" Alex thought this was awfully fun - he had never heard the pump be so noisy before, and he wanted to push the buttons too! Finally I realized that the pump thought it was empty, and shut itself off. So I reprogrammed it and it started again.<br /> <br />After the (seemingly deafening) beeping stopped, and I knew the experience was over, I had Alex go wake up Daddy, and tell him that "Mommy needed his help now, please." Alex did as he was told, and Aaron came immediately (the "now" always brings Aaron running). That was an answer to prayer in and of itself - Alex usually flat out refuses to wake up Daddy, and no amount of coercing him will get him to do it. (On the other hand, he LOVES to wake ME up when I'm sleeping!) So, I told Aaron what happened, and he took over "Alex duty" so I could sit there and get my heart to slow down from the adrenaline and let my body adjust to what just happened.<br /> <br />Since this happened, I've been "rosy" again in the face, and more out-of-breath than I had been for quite some time. But, as time goes on the side-effects of the abrupt stop in medicine are fading. Praise God for giving me a clear mind through that ordeal and bringing me through safely to the other side. "Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me..." (Psalm 23:4a).<br /> <br /><u><b>Item #4</b></u> - There are lots of "odd" side effects to the medicines I'm on. One that showed up probably two or three weeks ago (for the FIRST TIME EVER!) was nose bleeds. They've gotten progressively worse over these couple weeks, and the past couple nights (for example) I was waking up 3-4 times EVERY hour with blood running down my upper lip. They didn't last long, and there wasn't that much blood, but they had become almost constant - a little trickle of bleeding that just didn't want to stop. For the past several days I had been using a tissue probably every 10 minutes, and there was blood each time. Well, I pulled out the humidifier a few days ago (in case the dry winter heat was playing a role in them), and it didn't seem to help at all. Well, this morning at Bible Study one of the leaders asked for anyone with a need to come forward for prayer. I went. If me dealing with this constantly was God's will, then so be it. But it was a "new" side-effect, and I refused to just sit idly by any longer and do nothing about it. Well, a sweet woman of God (who I got to know a bit better this past Fall, and have come to really respect) came up front and started praying for me and the bleeding to stop. The image that was running through my mind during the prayer was the woman who suffered from bleeding and just touched Jesus' robe and was healed (Mark 5:24-34). At one point while we were praying I thought I felt blood about to run out of my nose, and I prayed a rebuke against the bleeding. I grabbed a tissue, and it was not blood. It's been SIX HOURS and my tissues haven't even had a hit of PINK on them! I fully believe that God has healed my nose bleeds!<br /> <br />Praise God that he cares about even the small details of our life. Nothing is too big or too small to go to Him about in prayer. He doesn't always answer our prayers with a "yes," or the way we expect, but He always hears us and answers our cries. I'm so glad my God is the God of the inconsequentials!<br /> <br />~ Julia<span style="color:#888888;"><br /></span>Julia Feitnerhttp://www.blogger.com/profile/11981970764141155286noreply@blogger.com0tag:blogger.com,1999:blog-4923343001204547774.post-2395164989717319162009-02-18T11:59:00.005-05:002009-02-22T12:03:16.039-05:00#37 - A Celebration of LIFE!<div style="font-family:georgia;"><span style="font-weight: bold; font-style: italic;font-size:100%;" >Date Sent: Wed, Feb 18, 2009 at 11:57 AM</span><span style="font-size:100%;"><br /></span><span style="font-size:100%;"><br />Aaron sent the following email to a select group of his co-workers this morning. I thought it was worth sharing.<br />~ Julia<br /><br /><br />All,<br /><br />If you are receiving this you are a part of a large network of people that were a part of our life one year ago today when we ( Julia and I ) were given grave news. ( <a href="http://millionmiracles.blogspot.com/" target="_blank">whole story here </a>) You are also witnesses to so many miracles that we experienced. The doctors told us that they didn't expect Julia and our unborn child to live, and yet a year later they LIVE. This morning a year ago she was finally diagnosed. Tonight a year ago they transported her to UPMC to try to save both lives. Tonight at 2 am was when they intubated her since she was no longer able to breathe. And tomorrow at 10 am is when another of many miracles occurred, Harrison was born - alive. What we went through, most will never know, and I wish it to never happen to anyone I know. Throughout the last year Julia has slowly taken one new breath at a time, walking with oxygen / then without / then finally making it up a flight of steps / then being able to get out of the house / etc.. We are so grateful for all the support given, and the prayers said. Without it I truly do not think she would be here today. We still have struggles but we count them as blessings as it's far better then a life lost.<br /><br />So today we celebrate LIFE, the life of Julia. and tomorrow the life of Harrison - what the doctors said didn't come true, instead they LIVE!!!<br /><br />Take the time to call your family and say "I Love You." Take the time to give an additional hug to your friends. Look at each day as a gift, and each second as a opportunity to share your life.<br /><br />Aaron </span></div>Julia Feitnerhttp://www.blogger.com/profile/11981970764141155286noreply@blogger.com0tag:blogger.com,1999:blog-4923343001204547774.post-47444430767436581962009-02-14T12:11:00.004-05:002009-02-14T12:14:03.388-05:00#36 - One More Breath<span style="font-weight: bold; font-style: italic;">Date Sent: Sat, Feb 14, 2009 at 12:08 PM</span><br /><br />Most of America is either celebrating (or avoiding) Valentine's Day today. We celebrated it yesterday, because today, February 14th, has different significance in our household. It was one year ago today that I was hospitalized. I can't really say that it was medically the beginning of our hard times, since I've had this condition for several years. So ... instead it was the climax (hopefully not the pseudo-climax!).<br /><br />Even though being admitted to the hospital isn't ever a "good" thing, I was relieved that I was in a place where hopefully they could figure out what was wrong with me, and FIX it. But, instead, over the next couple days, bad turned to worse, and even worse, and ... well ... it turned into hell. God was with us through all of it, and in retrospect we are able to see His mighty hand of protection and provision. But there are so many memories that we just want to obliterate because they still hurt too much. Part of the grief cycle is that anniversary dates are hard - lots of memories come flooding back - and the first anniversary is generally the most difficult. Well, we've started our (three week long) first anniversary. I'm totally expecting this to be an emotionally packed three weeks full of thoughts/comments like "today is the day I was intubated," "today is the day the nurse accidentally gave me too much of the iv medicine and I had to be sent back to the ICU," "today is the day Harrison was discharged and I wasn't."<br /><br />Please join me in praying that we can continue to healthfully work through the emotions of last year as we live through the next three weeks. A girlfriend is going through a rough time right now, and when her struggles hit their climax, she had flashbacks to another traumatic experience in her past. I was talking with her yesterday, and she re-iterated the grave importance of working through this (and not just stuffing it and moving on) because life will always throw you a curve ball. Getting blind-sided unexpectedly is hard enough without being confronted by the unresolved past at the same time.<br /><br />A couple nights ago the whole "anniversary" thing started to come to the surface, and Aaron and I talked and cried until the wee hours of the morning as we verbalized different memories we each had. I don't think enough time has gone by to distort those type of memories - a lot was written down as we went through the experience (thanks to my mom's insight). But we finally got up the courage to tell each other some of our thoughts at some of the really tough times - like as I was being put under so they could intibate me and I was looking at my husband standing in the doorway talking to the doctors (was it for the last time when I would be un-sedated enough to know what's going on before we were parted by death?). (By the way, that was the idea of the thought - the actual "words" are too private to share publically.)<br /><br />During the next hours - after I was intubated, and before I was stabilized - I regained "consciousness" twice - both times I was suffocating. One time I motioned to the nurse(?) that she needed to squeeze the bag faster to get me more oxygen - and then I was immediately put under again. The other time was what purgatory (in Catholic theology) must be like - I was conscious of the fact I couldn't breathe (like a pillow was being held over my face), but had enough sedation that I couldn't open my eyes - or move anything. I can still hear the voices of people talking around me, while I was unable to let them know. Finally I willed (or God helped) one of my fingers to move a millimeter or so - and Aaron happened to be looking the right place at the right time and told the doctors I was coming out of the sedation. (Even now tears are streaming down my face as I remember.) During that dark hell I begged God for one more breath - and one more breath - and one more breath - even though the breaths weren't enough to satisfy my oxygen-starved body. It's been a long time since I've relived that nightmare at night while I slept. But last night I woke up in a panic because I dreamed it was happening again.<br /><br />I know that this type of brutal re-visitation is expected around anniversary dates, and that helps somewhat. There are so many horrific memories that we have that we're trying to effectively work through. Please pray for both of us especially diligently over the next couple weeks as we relive so much. ......I've just re-read what I've typed and wondered if it's too personal a memory to share this openly and in this type of forum. I don't plan to load on you all of the hard times, because there were thousands more good times since then. But maybe me "speaking the memory" so to say, will help make it a bit less painful.<br /><br />This past year has been a continual series of "one more breath" thoughts and experiences. Some breaths come easier than others, and these days they come more easily for me than they did two years ago (a full year before I was diagnosed). Praise God for how far He's brought me! But life itself is a series of taking one more breath. And the distance any of us have from death is just that - the time will come when we don't have that next breath. It may be "expected" because you're sick - but for the majority of us, it will be "unexpected" - a heart attack, a car accident, a plane falling from the sky and hitting your house while you sleep. Part of the human condition is the fact that we all die. If we accept Jesus Christ as our personal Lord and Savior, then we're promised an eternity in heaven. Christian theology describes hell as a lake of eternal fire. My personal hell (or the closest I hope to ever come to it) is being quasi-sedated and suffocating, and not being able to let anyone know I'm cognizant of it.<br /><br />But none of us are promised one more breath. Having a terminal lung condition, and fighting to breathe has taught me to appreciate each and every breath (literally - not just figuratively!) that God gives me. What are you doing with your breaths? Are you wasting them just trying to "survive" life and find "happiness"? Or are you making them count and using them for the glory of the one who created you? (Don't give me that evolution excuse - even Darwin himself concluded it wasn't even possible before he died - people just keep clinging to it because it's the only other "possibility" if you take God out of the equation!) I've learned the tough lesson that this breath (the one you and I each just took) might be the last. If it is, then what comes next? ....... Don't waste this next breath.<br /><br />~ Julia<br /><br />p.s. I've included a photo taken of me last year in Pittsburgh - it was the first time I sat in a chair after being bed-bound for almost 2 weeks.<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvHREX2dNPiBbtE9mioB0_KGsJUF8yaasZyWc2N7l_pNovHRi-jylaKmmSbFz-YEcAzSjm-a_oAG1pCSDY7FCC72M8TDTUmOJXumpo9hGDxxihCVMFl31lfrTN3X9qqqTvZJWjJLcCG2u8/s1600-h/February+2008+050.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 400px; height: 266px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvHREX2dNPiBbtE9mioB0_KGsJUF8yaasZyWc2N7l_pNovHRi-jylaKmmSbFz-YEcAzSjm-a_oAG1pCSDY7FCC72M8TDTUmOJXumpo9hGDxxihCVMFl31lfrTN3X9qqqTvZJWjJLcCG2u8/s400/February+2008+050.jpg" alt="" id="BLOGGER_PHOTO_ID_5302702319863283522" border="0" /></a>Julia Feitnerhttp://www.blogger.com/profile/11981970764141155286noreply@blogger.com0tag:blogger.com,1999:blog-4923343001204547774.post-47867111756752968132009-02-01T23:30:00.002-05:002009-02-02T13:15:09.291-05:00#35 - Manna<span style="font-weight: bold; font-style: italic;">Date Sent: Tue, Jan 27, 2009 at 11:20 PM</span><br /><br />So, you know the story. Moses led the Hebrew slaves out of Egypt. God miraculously parted the Red Sea so they could escape the Egyptian armies that fickle Pharaoh sent after them. Then after the Hebrew masses passed through on dry ground, the waters "un-parted" and destroyed their enemies (aka the enemies of God). The wavering Hebrews kept complaining about everything, but their patient and loving God still kept meeting ALL their needs. But rather than focusing on God's continual miraculous provision, they still found more and more things to complain about. God took care of EVERYTHING - their clothes and shoes didn't wear out even after wearing them for decades while wandering around the dessert. God even provided water, and supernatural food for them to eat - MANNA.<br /><br />Do you remember manna? It showed up each and every morning (except the Sabbath) on the ground for them to just pick up and eat. But ... if the people didn't trust in God's continued provision, and stored it for the next day, it turned rancid. This daily provision of their every need continued without fail for decades! (Note: once they reached the Promised Land the manna stopped and they had to start tilling the dirt and raising their own crops. The Promised Land, though "perfect" still required work from its inhabitants!) Even though they had a daily reminder that God hadn't forgotten them, they still complained: they got bored with His provision and begged Him for something else.<br /><br />So now that you remember the back story, do you remember what Jesus said to Satan when he was tempted in the dessert - "It is written: 'Man does not live on bread alone, but on every word that comes from the mouth of God.' " (Matthew 4:4, and again in Luke 4:4). So, where in the Old Testament (aka The Torah), was that written? Deuteronomy 8:3: "He <u><b>humbled</b></u> you and <u><b>let you be hungry</b></u>, and <u><b>fed you</b></u> with manna <u><b>which you did not know</b></u>, nor did your fathers know, <u><b>that He might make you understand</b></u> that man does not live by bread alone, but man lives by everything that proceeds out of the mouth of the LORD." Note here that God didn't feed them merely to satisfy their physical need: He fed them to teach them a greater spiritual truth.<br /><br />I was sitting in Bible Study the other week, and Deuteronomy 8:3 was nonchalantly read, then the teacher moved on with that night's topic. But I was stuck reading and rereading that verse. As I did, how I read it changed each time. "God humbled ME... and ALLOWED ME not to be able to breathe ... and breathed for me in a way that I did not know ... He met my needs in a way I had never experienced, nor did my parents who are (were) strong Christians experience that SAME KIND of interdependence on God ... that He might make me understand that I'm not alive because I can breathe, but that it's His breath that gives me life."<br /><br />It started with God humbling me - with Him taking me to a place where I couldn't keep going on my own strength. In my situation it was that I couldn't breathe anymore (and machines had to do it for me). It doesn't say that God caused the situation, and it doesn't say that Satan caused my problems (as was the case for Job), and it doesn't say that it was my own poor decisions that caused it. What caused my problem isn't what matters here. But it says He "LET YOU BE hungry" - He allowed it. That also implies that He knew about it: I wasn't alone going through the experience.<br /><br />But it doesn't end there. God didn't let me (or the Hebrews) stay in that needy situation. He fed them - He gave me breath, and He did it in a new way. God is too big to be put in a box, it's presumptuous for us to expect Him to work in our lives the same way he worked in someone else's (a friend or someone in the Bible). The Hebrews were given manna to satisfy their hunger. I was intubated (which is very unpleasant, but itself isn't "miraculous"), but my "suffocating/stagnated" walk with Him was revived. But the verse goes on. There's a purpose for all of this. They were taught that "man lives by everything that proceeds out of the mouth of the Lord." I got to experience the breath of heaven - His living breath - my spirit was revived.<br /><br />But I said that each time I re-read the passage the words changed (though not the meaning or significance). The Hebrews were hungry and were fed. I couldn't breathe, and experienced God's breath of life in a new way. But what is God wanting to teach you? Why is He humbling you (or has recently, or will in the near future)? Is He letting you know fear so you can experience His peace that passes all understanding (Philippians 4:7)? Is He letting you feel oppressed (spiritual, physical, or relational) so that you can experience the freedom that only He can give? Is He allowing you to doubt so that you can grow in your faith that "God will meet all your needs according to his glorious riches in Christ Jesus" (Philippians 4:19)?<br /><br />What caused your troubles (God, Satan, someone else, or even yourself) isn't necessarily what matters. He knows about your troubles. He wants you to be humbled (in response to His omnipotence/omniscience). He wants to meet your needs. But He won't stop there. He wants you to learn something about HIM as a result. Are you (and I) going to be grateful for the MANNA that God WILL provide for you in whatever you're going through right now, or will you be like the Hebrews and be insatiable and just complain?<br /><br />~ JuliaJulia Feitnerhttp://www.blogger.com/profile/11981970764141155286noreply@blogger.com0tag:blogger.com,1999:blog-4923343001204547774.post-52210518634808734902009-02-01T23:28:00.002-05:002009-02-02T13:15:33.555-05:00#34 - Weight Woes<span style="font-weight: bold; font-style: italic;">Date Sent: Sat, Jan 17, 2009 at 9:16 AM</span><br /><br />At 32 weeks pregnant I had only gained 5 pounds, between week 32 and 33 (when I was hospitalized), I had gained an additional 7 pounds (of swelling)! During the several days in the hospital before Harrison was born, I gained LOTS more water weight (because I was in right-side heart failure). At 34 weeks Harrison was born - and he weighed 5 pounds even. So, in essence (if you take into consideration the extra blood flow, placenta, amniotic fluid, etc.) I had LOST weight while I was pregnant. A week in the hospital of eating NOTHING, and two weeks of barely eating anything resulted in me being 20 pounds lighter when I was discharged than before I got pregnant. That wasn't the ideal way to loose weight, but I was SO EXCITED to look down at my legs or at my face and see them thinner! In the eleven months since I was discharged, I have gained the entire 20 pounds back. I know that sounds like so much weight to put on so quickly, but when you consider the fact that the only "exercise" I got was walking up the steps in my house a couple times a day.... I just hadn't cut back my food intake enough to match my lack of physical activity.<br /><br />Most winters (Feb/March), Aaron joins his family to go skiing in Utah for a week. This year he's taking Alex with him, while I stay home with Harrison. I can't handle the elevation of Park City (7000 feet on Main Street). Actually, looking back, that's how we know that I've had PH for at least 5 years, because 6 years ago when I accompanied his family I did just fine. But 5 years ago when I went I struggled, and 3 years ago I had horrible altitude sickness the whole week - I could barely walk around the hotel room! So, anyway, Aaron's decided to get his "skiing muscles" ready for the trip (since this past year he's focused on me rather than exercise). So, last week he started on the treadmill (walking backwards uphill on it does wonders for those muscles!). I decided to start too.<br /><br />One of the updates I sent last week talked about my experience last Friday, when I finally "got back in the saddle again." I ended up going about 10 minutes at a speed of 1.3 mph (which is quite slow). Well, every day since then I've gotten on again, and as I get stronger I've been going slightly faster, and slightly longer. Yesterday I went 20 minutes at 2.2 mph (with oxygen on) - and I wasn't tired or winded afterward! That meant that I ended up walking .75 miles. That's still not far, but a HUGE improvement from a year ago!! Sometimes when people increase their energy output they also increase their food consumption. This past week I've been careful that I didn't do that. I felt GREAT! So much more energy!<br /><br />Then yesterday came ... and it hit me ... I felt HORRIBLE! It felt like I had "increased" the strength of the iv meds. I was having all the side effects again - I was exhausted, my bones hurt, had a headache that wouldn't go away, I was nauseous.... So, I got on the scale... As of this morning, I've lost 4.5 pounds in one week. IMPRESSIVE, eh? I guess it was too much too fast. My body is getting slightly more medicine since I have slightly less body mass. It's been so long since I've gone through an increase, that I forgot how unpleasant they were. I never thought I'd lose THAT much THAT fast. Oops! I guess I have to slow down. When people lose weight, they want it to come off as quickly as possible. Apparently I can't do that. Sometimes it feels like I just can't win. Hopefully if I can wait a few days for these side effects to wear off, I can get started again. Guess it'll be a longer process than I hoped to lose the 20 pounds again. Hopefully I'll be able to tolerate that much extra medicine. Otherwise I'll have to have a chat or two with the doctor about what to do.<br /><br />This morning when I woke up I felt better - though not quite myself. The first 24 hours after an increase were always the most difficult - guess I'm beyond that now. I think I'll take today easy, and then start again tomorrow - more slowly.<br /><br />~ JuliaJulia Feitnerhttp://www.blogger.com/profile/11981970764141155286noreply@blogger.com0tag:blogger.com,1999:blog-4923343001204547774.post-71868029650720031222009-02-01T23:25:00.001-05:002009-02-02T13:15:56.444-05:00#33 - Hope for the Hopeless<span style="font-weight: bold; font-style: italic;">Date Sent: Fri, Jan 9, 2009 at 1:22 PM</span><br /><br />In November I finally started a blog about our family's adventure. Feel free to check it out at <a href="http://feitnerfamily.blogspot.com/" target="_blank">http://feitnerfamily.blogspot.<wbr>com/</a>. I've gotten such overwhelming feedback (from others who are hurting) about the post I wrote this past Wednesday, that I decided to share it with you also. Maybe you'll find something speaks to you - maybe not. But either way, here it is.<br /><br />~ Julia<br /><h3> <a href="http://feitnerfamily.blogspot.com/2009/01/hope-for-hopeless.html" target="_blank">Hope for the Hopeless</a> </h3> A song keeps playing in my mind over the past week or two (the words and music are by Don Moen). It's a song I've known for years, but never really took to heart. It started when I was praying for a friend who's going through a rough time. I kept praying for her intermittently for the better part of the morning, and each time I did, the song popped in my head again. (When I wasn't praying for her the song I heard was Pink's "So What" - not Christian in the least, but I heard it on the radio as I was flipping stations, and it stayed with me all day.) Since it (the nice song) kept popping into my head every time I started praying for her again, I figured it was meant for her. So I emailed her the lyrics.<br /><br />But since then, the same song keeps coming to mind when I'm praying for other friends too. At first I thought it was just because I was associating it with hurting friends. I no longer think so. We all have pain in our lives - either currently, or previously, or in the near future. As Christians we can cling to the promise "...that <span style="font-weight: bold; font-style: italic;">IN</span> all things God works for the good of those who love him, who have been called according to his purpose" (Romans 8:28). Even our insufficiency, our brokenness, our pain, our mistakes (even the BIG ones) - God will somehow use for GOOD in our life. But this is only a promise for those who who are trying to follow His will (or who had been once, and then truly become repentant).<br /><br />I've had some rough days (emotionally) over the past year. When I was first hospitalized last February, I was relieved that someone was going to find out what was wrong with me and be able to fix it. But when the doctor came in and told me that he didn't think I'd live to see my son born (I was 33 weeks pregnant), my world came crashing down around me. But God brought me through. There is no earthly fix for what I have - except an eventual double lung transplant, and I'd only have a 35% chance of still being alive 5 years after the transplant. But just before that doctor "told me like it is," God, in His generosity and love verbally spoke to me and told me that "it will be okay. This will end." Since then He's confirmed over and over again that it WAS His voice I heard. I don't know how long I will be struggling with this terminal illness before he chooses to miraculously heal me, or what hard times I'll have to go through in the meantime. Nevertheless, I clung to those words through through the weeks of agony in the hospital - during the times when I literally was fighting for each and every breath - and during the months since while I'm struggling to regain a "normal" life - for me and for my family.<br /><br />In Isaiah 46:4, it says "... I am He who will sustain you. I have made you and I will carry you...." How reassuring to know that St. Augustine's "Ultimate Being," the Creator of the entire universe wants to and will sustain ME. He will CARRY me when I don't have the strength to take one more step, or even to stand. It is when I fall to my knees (in prayer, humbleness, submission, exhaustion, etc.) that He will gently pick me up. It doesn't say He will "hold me," it says "carry me" - He won't let me stay where I am, in my "dark place" (as a hurting friend recently so eloquently phrased it). He will move me to a place of safety, a place of comfort, a place of growth and even love and forgiveness.<br /><br />God will make a way<br />Where there seems to be no way<br />He works in ways we cannot see<br />He will make a way for me<br />He will be my guide<br />Hold me closely to His side<br /> With love and strength for each new day<br />He will make a way He will make a way<br /><br />By a roadway in the wilderness<br />He'll lead me<br />And rivers in the desert will I see<br />Heaven and earth will fade<br />But His word will still remain<br /> He will do something new today<br /><br />God will make a way<br />Where there seems to be no way<br />He works in ways we cannot see<br />He will make a way for me<br />He will be my guide<br />Hold me closely to His side<br />With love and strength for each new day<br /> He will make a way He will make a wayJulia Feitnerhttp://www.blogger.com/profile/11981970764141155286noreply@blogger.com0tag:blogger.com,1999:blog-4923343001204547774.post-3069831263652163072009-02-01T23:24:00.001-05:002009-02-02T13:16:07.398-05:00#32 - Back in the Saddle Again<div> <span style="font-weight: bold; font-style: italic;">Date Sent: Fri, Jan 9, 2009 at 1:17 PM</span><br /><br /></div>It's been just over a month since my last email update. The Christmas season was wonderfully busy in our house. We decorated on Black Friday, and took down the decorations just before New Year's. I would have loved to keep them up longer because I absolutely live for Christmas, but the tree was starting to shed needles (it was a fir, so it held up very well considering), and we wanted it out for trash day before Aaron had to return to work.<br /><br />In the beginning of December I started a new pill called Tracleer, that's supposed to help with my PH. You take a 1/2 dose for a month, and then as long as you're doing okay on it, you start the full dose. My first full dose pill will be this evening. Hopefully I'll respond well to the increase. Just before I started this pill I was getting out of breath walking up a flight of steps again, and a week after starting I walked about 1/4 mile and did okay. So, it seems to be helping a lot! I'm hoping that the full dose will make my life even better! There are side effects, though. Mostly so far it's just heat flashes (I now have so much more empathy for women going through menopause!). But it can also cause some pretty serious liver damage, so I have to get my blood checked once a month to make sure my liver's doing okay. But if this pill is what God wants me to take, then He'll protect my liver.<br /><br />In the end of December (a full year ago) or beginning of last January I wanted so desperately to get "back into shape." So, I got on our treadmill to do a little exercise. Those 60 seconds were probably the most discouraging ones I had had up to that point. I was walking on the slowest possible setting, and still didn't last even a full minute. You can only imagine the horrible things I told myself when I had to stop and sit down so I wouldn't pass out. This was probably a month or so before I was hospitalized and diagnosed with PH. Well, it's been a year since that moment of defeat, and whenever I am in our bedroom I still try to avoid even glancing at the treadmill because those horrible feelings come flooding back so easily.<br /><br />Well, this morning the boys woke up early, so I decided it was time to get back in the saddle again. So, I put on the oxygen and the pulse-ox on my finger (to check my pulse and the oxygen saturation of my blood) and started. Before I even turned it on my heart was racing - I was so scared that I'd feel that same kind of defeat again. I shouldn't have, because I can now do grocery shopping with both kiddos. But the last time was so traumatizing that I was really nervous. I ended up only walking about 10 minutes, and at a speed of 1.3 (which wasn't quite the slowest possible). But I wanted success more than "impressive" numbers. AND I DID IT! My oxygen sats even stayed in the mid 90s! Next time I'll try going longer or without oxygen and see how I do. But it's the first time back that's the hardest.<br /><br />Now that it's almost one year since I was hospitalized, Aaron and I keep reliving some of our experiences, and reprocessing everything. I guess it's part of the normal grief cycle. We can see how far God's brought us, and are awestruck! My energy level is better than it was TWO years ago at this time. (I know that because two years ago we were house hunting and packing, so I remember how tired I was during that process.) I'm not where I want to be, but Praise God I'm not where I have been. I keep moving i the "right" direction!<br /><br />Blessings.<br /><br />~ JuliaJulia Feitnerhttp://www.blogger.com/profile/11981970764141155286noreply@blogger.com0tag:blogger.com,1999:blog-4923343001204547774.post-15451962257460216072009-02-01T23:23:00.001-05:002009-02-02T13:16:17.020-05:00#31 - One-two punch<span style="font-weight: bold; font-style: italic;">Date Sent: Fri, Dec 5, 2008 at 12:36 PM</span><br /><br />My last email briefly mentioned the recent prayer time that was had around me (and others) at church, and how I've been breathing easier since then. Praise God! Well, at one point during the prayer I started to get really bad pains in my legs. One of the "mature" men-of-God who was praying explained that it was Satan trying to distract me from the real issue. So, they prayed about the pains and they left. I mentioned to him that I get those type of spiritual attacks frequently. Satan knows that right now I'm struggling with my health, so he keeps sending me more physical attacks (as opposed to emotional/relational/etc.). When Jesus had been fasting for 40 days, Satan used the enticement of food to tempt Jesus into sinning (Matthew 4). But though Jesus was tempted, he didn't sin. Well, I've been dealing with physical/health problems for so long, that he knows that's probably a weak area for me. The past couple days Satan has stepped up the attacks.<br /><br />Aaron's holding onto some "normalcy" in his life through his job. He can temporarily escape what's going on at home and go to work (though my health is always still in the back of his mind). He's gotten huge satisfaction in his job throughout the past year or two. Of course he has stressors also, but overall, he loves what he does. Well, the past month or so Satan's been tiring his hardest to discourage Aaron at work. It's been working. But hopefully now that we've finally realized it for what it is, we know better how to pray about the situation(s). Please join us in praying for God's will to be done and for peace for Aaron.<br /><br />For the past three or four years I've struggled with migraines. They started after Alex was born, and the doctors can't figure out what causes them. But I've learned how to recognize them starting, pop a few pills right away, and then can cope because the pills take the edge off. They generally last an hour or hour and a half, and with the pills the migraine is quite uncomfortable, but bearable. This morning I woke up and within a minute or two felt one starting. So I immediately took the pills, and then expected to get on with my day. But today's migraine was different! It put me flat on my back. I couldn't open my eyes because it hurt too much. The pain kept getting worse and worse. For the first time in my life I was vomiting because of how much pain I was in. This morning it lasted three hours! At one point my mother called me from California (because the Holy Spirit told her she needed to call me right then). As soon as the ringing stopped, before I even heard her voice, I started crying, "Mommy, pray for me." She started to, and the pain lessened a bit. Aaron and I phoned several people to ask them to pray - but didn't reach any of them (Satan was trying to keep discouraging us!). Mother also started calling people to ask them to pray. She got through to some and left messages for others. As people kept praying, the pain diminished more and more. And within probably 30 minutes, it was totally gone. Praise God that through the power of prayer we can overcome! With every other migraine I've had, I've been physically tired for the rest of the day. But, I'm not tired at all. I'm geared up and ready to get stuff done. This wasn't a usual migraine - it was a spiritual attack. So, for those of you who got a call and prayed, thank you. For those of you who just felt impressed and prayed, thank you. For those of you who after reading this email, will pray, thank you!<br /><br />I doubt this is the last attack Satan's going to throw my/our way. He doesn't give up - he doesn't really have anything else to spend his time doing. We both feel that there's going to be other physical attacks coming soon (someone else actually just phoned us and has the same feeling). So, please keep praying for us - that we'll stay safe, and be able to remain strong and keep praising God through all the punches Satan throws our way. But as for this morning's attack - I'm still standing, and still praising God.<br /><br /><span style="color: rgb(136, 136, 136);"><span style="color: rgb(136, 136, 136);">~ Julia</span> </span>Julia Feitnerhttp://www.blogger.com/profile/11981970764141155286noreply@blogger.com0