I'm continuing to do well almost 5 weeks post-transplant. No incisional pain, and minimal minor annoyances (initial lack of bladder capacity which is improved, arm pain right after surgery that is no more, etc).
I got my weekly labs back, and everything is pretty much stable, except for my glucose.
But before I discuss my labs, I'll take this time to list the meds I'm on, as they are fairly standard for a post-transplant patient:
Prograf 3 mg in am and 2mg in pm. (immunosuppressant)
CellCept 500mg in am and pm. (immunosuppressant)
Dapsone 100 mg daily. (prevents Pneumocystis, an opportunistic organism that can cause pneumonia; they usually use Bactrim for this, but I'm allergic to it. Interestingly, the primary indication for Dapsone is to treat Leporsy).
Valcyte 450 mg in am and pm (anti-viral used to treat or prevent CMV; my donor was CMV + and I was CMV-, so I'm on a higher dose than normal).
Aspirin 81 mg at bedtime (prevents blood clot problems, especially with the new kidney. I take it at bedtime, as there was a recent study that showed that systolic BP was lowered when taking it then, but not when taking it in the morning).
Prilosec 20 mg at bedtime (slows down acid production in the stomach; I started it when I was vomiting and had an upset stomach, which could be a side effect of one of the other meds).
Multivitamin and Citrical (I had gastric bypass, and since my absorption is not as efficient now, my Bariatric doc wants me to take these).
And now for my labs (which can be viewed here towards the bottom of the page).
Most importantly, my creatinine is 1.4! I'm told that this may go down as my Prograf is eventually adjusted downward. My glucose is high for the first time since the hospital; this could be a transient high, or could be the start of a trend; time will tell. Prograf can elevate blood sugar. My CO2 is low, which could be due to the diarrhea most likely caused by CellCept.
My blood counts are a little screwy. My white count (WBC) is low, but that is due to both CellCept and Valcyte. The Valcyte is temporary (6 months), and the doctor won't do anything unless my WBC goes below 2. My hemoglobin is still low, but I'm getting an IV iron infusion tomorrow, so maybe that will help. Even if the kidney is producing erythropoietin, it needs iron to increase hemoglobin. My segs are still elevated, and it was explained to me that in this case, that is good.
My Prograf level (aka FK-506) is 8.1, which is within the range they want it at.
In addition to the iron infusion tomorrow (Venofer), I'm going to the Urologist for a cystoscopy to remove the stent that's between my bladder and transplanted kidney. I can't tell it's there, but it was only temporary, in order to keep the urinary tract open, and prevent damage to the new kidney.
On the lighter side, if you're feeling particularly adventuresome (medically or gastronomically), try this out.
I found your blog through kaplyinc.blogspot.com.....
Just thought I'd stop by and congratulate you on your transplant. Don't you feel great?
I had mine in 2006 and couldn't believe how much better I felt after. The effects were almost immediate.
Take care.
Thanks for the congrats. I feel UNBELIEVABLY better; the best I've felt in over 5 years! My effects were immediate as well; once I was fully awake from the anesthesia, it was like night and day.
I just found kaplyinc today; I hope she's able to do home hemo; I hear it's a big improvement over in-center hemo.
Jeff
Yeah, I wasn't even fully awake.... They woke me up from surgery and were wheeling me into the recovery room and, while I was obviously out of it, and in major pain, and wanting to just get where ever I was going and to sleep, I felt better. I knew the difference in my system that quick.
My doctor's told me it's a pretty common thing...but it is strange, because it's not like your blood is clean that quick. When my surgeon came by to visit me with a bunch of his interns, he asked me when I felt the difference and after my answer turned to the group and said ..."See? We don't know why!".
I am interested in hearing your thoughts on GBS. It's pretty odd that we're in a situation that we are doing them in the opposite order. My transplant team wants me to do it...but I've been back and forth on it. I really need to get in and talk to the GBS surgeon, I just am dragging my heels on it. I'm pretty sure it's something that's going to have to happen. I'm not having success trying to do it on my own. I'll email you about it.
With regard to the drugs I pretty much took all the same stuff... I also had prednisone and still take a small dose. The only real difference is I don't take prograf. I'm on a drug study for a company called Isotechnika. I take a drug that's a modified version of cyclosporin. They apparently took one of the molecules and reversed it or something to that effect and it makes the strength of the drug something like 10 to 20 times stronger. They are able to give you much smaller doses and at the same time are reducing the nephotoxicity of the drug to negligible. Essentially wiping out the need for future transplants from the drug toxicity. It's not to market yet. I'm hoping it comes out soon. I really want everyone to get the benefit of it.
I dragged my heels for almost 3 years, so I know where you are coming from.
Very interesting about the new drug; I hadn't heard of it. I'm on Prograf, which carries a risk of kidney damage, but not as much as Cyclosporine; hopefully Isotechnika will pass trials.
Feel free to email me; chronicpositivity at verizon dot net.
Jeff
My original term for my study drug was 1 year. My doctors fought and fought with the drug company to extend the studies, but didn't get the extension in time for my 1 year anniversary so I had to temporarily switch to Prograf until my 3 year extension came through.
I couldn't stand Prograf. The doctors ended up starting me on WAY to high a dosage and I was out of it. Headaches, dizziness, confusion, forgetfulness, lack of focus, nausea, general body ache.....they started me a Friday and told me to come back Monday for labs. That was the worst weekend I had...maybe ever. On Monday they discovered I as getting 8 times more than I needed to maintain good blood levels. Even after they reduced my dosage, my brain never really seemed to work right until I switched back to my study drug.
It's funny how differently people react to these drugs. I have no ill side effects from my study drug, but other people hate it and have quit the study because of how it made them feel.
Although the study for Voclosporin is still at Phase 2b, the results seem to show a significant improvement over Prograf.
My Prograf level got to almost 13 at one point (they were shooting for 8-10), and I had worsening of side effects at that level, but so far, since my level is normal, I'm tolerating it OK. But you are right; a specific med may be well tolerated in 1 person, and not at all tolerated in another. One size does NOT fit all.