It's been a while since I have had a positive post - my recent ones have been kind of snarky!
I recently passed the six month mark since my transplant. Right at the six month mark, my creatinine (a measure of kidney function) returned to a good number. I've added an extra liter of water a day to help flush those toxic drugs out of my system and I hope that has helped.
Overall, my life has improved considerably by transplant. I haven't had a protein shake (a common former meal of mine) in months. I have been eating real foods - including hard to digest things like asparagus and salads! I am no longer malnourished or underweight. I look a lot healthier and am no longer terrified of eating out. I avoid soup, a previous staple of my pureed diet. My gastroparesis is not gone (I happen to be nauseous right now for example), but it is so so so so much better, and that has made this whole process worth it.
My WBC (white blood cell count) continues to be low. They took me off some of my drugs in hopes of boosting it, but I still have never gotten above 2.0-2.9. I bottomed out around month five at 0.9 for several weeks. What this means is that it will be harder for my body to fight infection if I catch something. I have been blessed so far to stay healthy.
For months now, I have been reassured by my new good life that I made the right decision to have a transplant. My gastroparesis has reverted to about the state it was at five years before transplant - before the days of intractable nausea and protein shakes (yum!) and being underweight. It is amazing.
In addition, while I do take a lot of pills, the dose rarely changes. Diabetes was an at least hourly evaluation of whether I was rising or falling, eating or exercising, etc. and adjusting accordingly. While the meds are a lot to swallow, pun intended, it is actually much easier than treating brittle diabetes.
On a side note, just when things were going great, I fainted this morning. A first for my entire life! Hopefully it was a one time thing. I hit my head or neck on something but it just aches, no worries. Julian is watching me closely. It was probably from standing up to quickly.
I pray daily that this transplant lasts. It is such a gift, and certainly something that would devastate me to lose. I like this new life too much to even think about it!
Posted by sfisher at August 26, 2007 01:50 PMHave your doctors talked to you at all about adding domperidone for the gastroparesis? I have a horrible time with Reglan, and had to be kept at very low doses as a result. After my 3rd admittance to the hospital with intractable vomiting in 4 months they suggested it, and I've never been better. It's not FDA approved, so I have to have it compounded, but it's still readily available from Canada online. Next step was a gastric pacemaker. I also use Zofran and Carafate as needed, and Prevacid and am doing really well at the moment.
Posted by: Christine at October 12, 2007 10:39 PMChristine- since reglan worked for me, and my insurance covers it, I never tried domperidone. I do have a compounding pharmacy nearby that makes it if things change.
Thankfully I am down to two doses of reglan / day (from four previously). Things are going well enough with transplant that at least for now, I don't need to try anything new :)
But thanks for bringing it up!
Posted by: susan at November 1, 2007 01:32 PM