#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