#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