Thanks everyone. I appreciate your messages. So far, it’s going very well. All my almost daily bloodwork is right where they want it. My creatinine is steady at 130 umol/L. Seeing as mine was 110 before I ever had kidney disease (back when I was a spry 23 year old), 130 isn’t bad at all. I feel so much better, and, I’m still so thrilled to be “free” at night that I spend most of the night up. Well, the 20 mg of prednisone a day probably has something to do with that
In case you’re interested, I take a total of 22 pills a day, but a few of those are multiples of the same pill. There are actually only 11 different pills which are directly-related to the transplant, and a few of those I was on already anyway. So, I think it’s not as bad as most of us imagine before we get there. Surprisingly, no side effects at all so far. I just had a bit of nausea the first week, that’s all, and a dose of Gravol took care of that in a hurry. I have no idea where those stories about 140 pills a day come from. Maybe in the distant past.
My anti-rejection drugs are tacrolimus (Prograf), Cellcept and prednisone. Contrary to popular misconception, the dose of prednisone is pretty small. I’ve already been down to 20 mg a day for the past 3 weeks, and within a few more weeks, I should be down to 5 mg. I really don’t understand what the big fuss is over the “non-steroid protocols”, because 5 mg is almost nothing. Why take a chance with experimentation? When they gave me that big pre-surgery dose of pred (800 mg in my case), I felt nothing unusual whatsoever.
You know what? Buttonholes are very short lived when you don’t use them. Mine were totally gone within a week after the transplant. Now there’s just a faint little round scar.
No regrets, but it’s only week 3. It’s not all rosy, of course. Having been on daily nocturnal hemo for a year and half after 2-1/2 years at the dialysis centre, I’m actually on a way more restrictive diet now with the transplant. On nocturnal, I could pretty much eat whatever I wanted within reason. With the new kidney, mostly to counteract some of the potential drug effects, I have to follow a no-added sodium diet, plus low cholesterol, low calorie and low fat diet. But my potassium tends to be low, so I can eat all the bananas I can handle. And of course, instead of any fluid limit, it’s the opposite. I have to ensure I drink at least 3 litres per day. This sounds like fun, but it’s actually hard to do. That’s a lot of water in just one day… and it’s like this every single day. And it has to be mostly water, because soft drinks and juice would be too much sugar.
One big advantage… I no longer have any interest in the big debate between NxStage users and everyone else
Well, to be honest, it will be interesting to see how this all develops. Everyone knows that a transplant is not a permanent thing. But I’ll certainly take it over dialysis while it lasts, no question about that. My big Fresenius is still here, for another 2 months, just in case I should need to return to it. I guess I would need new buttonholes, though.
Best of luck to you all, and if you’re waiting like I was, patience. Your time will come, and then it will be like you never waited at all.