#53 - In Sickness & In Health

Date Sent: Sun, Dec 13, 2009 at 12:02 AM

(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."

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.

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.

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.

It's taken me a long time (and several good sermons from our "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.

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 talked 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: "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.

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.

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.

~ Julia

#52 - now you see me - now you don't

Date Sent: Fri, Oct 30, 2009 at 3:58 AM

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.

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!)

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!

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.)

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.

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!

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.

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.

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.

Blessings.

~ Julia

#51 - The Good, The Bad & The Nervous

Date Sent: Fri, Oct 23, 2009 at 5:28 PM

I know it’s been ages since I’ve sent an update. Life has been busy for the Feitners. Aaron has spent the past 8 weeks working (Monday thru Thursday) in Pittsburgh, and then coming home for the weekends. We sold our house, and bought one just north of Pittsburgh outside of Cranberry Township. Well, we’ve almost bought it – technically that happens this coming Friday (October 30^th). I’ve been busy being a single-mom and packing for our upcoming move (with the help of friends). 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!

THE GOOD:

As you know, I’m on a continuous iv that helps me breathe, and I also take a pill twice a day. 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. 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.” Each month he decided to “keep watching me.” Last month when I got that same phone call, I was asked if I drink tea. Well, yes I do – I love tea, especially when the weather turns chilly! Apparently for some people tea (hot, cold, green, fruit, etc.) can affect their liver. So, I was instructed to quit ALL tea and see if that helped keep me on the pill a bit longer. Today I received a call from the doctor’s office and was told that BOTH of the liver enzymes are ABSOLUTELY NORMAL again!!! YAY!!! So, still no tea for me, but at least my liver’s not being damaged (this month, anyway). Only God knows if my liver’s “healed” because of His hand, or because of quitting tea, but either way, PRAISE GOD!

THE BAD:

I’ve not been feeling well lately – had all the symptoms of the flu. 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. 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. So, I went in on Thursday for the blood work, and got a call this afternoon with the first set of results. Apparently I do NOT have the flu. I have a cold. So, that’s good. Oh yeah, and I also have SEPTICIMIA … again. 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). We’re still dialoguing with the doctor about what to do long-term to stop these infections (most likely a medicine change). But for the short term, they’ve got to get rid of this infection (which most likely means pulling this hickman catheter out). He told me to expect to be there a couple days (yeah – um – I’ve been through this once already). I’m REALLY hoping and praying that this time around I’m not delirious, or vomiting constantly, or, or, or, OR…. Sigh. We could all use LOTS of prayers right now.

I really try not to be a complainer, but the last time I had this, the only way to describe it is PURE HELL. 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 quite unpleasant. I tried to smooth over how bad it was in my previous emails, but frankly put – septicemia KILLS. The research I did said it was like a 50% mortality rate for the category into which I fall. 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. So, please keep ALL of us in your prayers extra this week.

THE NERVOUS:

Like I mentioned earlier, we’re supposed to settle on our new house next Friday. This means that we’re packing the huge moving truck next Wednesday, and driving to Pittsburgh next Thursday. 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. I might even still be in the hospital! I know that the move can happen without any more input from me, but I feel responsible for making sure everything runs smoothly. “Managing” falls more under my strengths than Aaron’s. 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!)

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. Guess God’s wanting to make sure I’m completely dependent on Him once again. Ummm… I get the point. HE should be my chief support network, not just the people around us.

So, thank you for all of your prayers for our family. We ALL need strength, prayers, and love right now. I know God will work all of this out – it’s not a surprise to Him. But, it sure is a surprise to US.

Peace to you and us.

Julia

#50 - A Drive-Thru Visit

Date Sent: Sun, Aug 16, 2009 at 9:50 PM

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 - sometimes 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.

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!

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.

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.

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!)

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!!!

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.

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!

A very relieved,

~ Julia

#49 - Hi-Ho, Hi-Ho, It's Back to the Hospital I Go

Date Sent: Fri, Aug 14, 2009 at 1:58 PM

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....

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.

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.

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.

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.

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**

Thank you for your prayers! Catch ya on the flip side....

~ Julia

#48 - Wheelchair Rides

Date Sent: Tue, Aug 11, 2009 at 6:48 PM

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.

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.

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!).

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)

~ Julia

#47 - Chocolate, Chocolate Everywhere, But Not a Bite to Eat

Date Sent: Sun, Aug 2, 2009 at 9:57 PM

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.

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).

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."

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....)

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.

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.

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!

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**

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!"

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**

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.

~ Julia

#46 - Fork in our Path

Date Sent: Mon, Jul 20, 2009 at 5:43 PM

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 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....

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.

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.

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.

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.

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.

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 HERE. 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 ...

Congratulations, Darling.

I'm so proud of you!

#45 - ALL THINGS ... not just SOME

Date Sent: Fri, Jul 10, 2009 at 9:38 PM

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.

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.

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.

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.

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.

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.

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!

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.

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.

Thank you for your prayers as I transition back!

~ Julia

#44 - The heart of the matter

Date Sent: Thu, Jun 25, 2009 at 11:28 AM

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.

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.

This one was different. 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!

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.

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.]

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: "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!" 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!

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).

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!

I'm supposed to do a couple more increases - to get me to 35ng. At that point I'll stop, and try it out, and let him know if I want to go to 40 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.

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!

An ecstatic,

Julia

#43 - Step by step

Date Sent: Mon, May 4, 2009 at 10:49 PM

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.

Step by step, we're moving forward
Little by little, taking ground
Every prayer a powerful weapon
Strongholds come tumbling down
and down and down and down

We want to see Jesus lifted high
A banner that flies across the land
That all men might see the truth and know
He is the way to heaven

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.

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.

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"!!!!!

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.....

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!

~ Julia

#42 - So long, farewell ...

Date Sent: Sun, May 3, 2009 at 4:51 PM

... auf Wiedersehen, adieu! Adieu, adieu, to yieu and yieu and yieu ...

Goodbye Flolan. Goodbye rash on my arms, chest, and back! Goodbye red face and hands - at least for the time-being.

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.

THE GOOD: 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!

THE NOT-SO-GOOD: 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.

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!!!!!

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.

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)

~ Julia

#41 - Round Two

Date Sent: Mon, Apr 20, 2009 at 2:49 PM

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.

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.

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!

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?

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.

Thank you.
~ Julia