Month 15, part C
It’s been another week of test results that seem to reveal nothing about the cause of my current physical problems. While there are things in the blood that indicate whether the kidneys are functioning properly (and these things seemed normal recently), the 24 hour urine test is kind of the gold standard because it shows what the kidneys really do for a day. The results of this test still showed normal functioning, as did the extra blood tests which I had but don’t know what they were. This is good news, but means the medical team remains stumped by condition which, while it doesn’t seem to be getting worse right now, also doesn’t seem to be improving.
..... 2 wks ago current normal
.....---------- ------- ---------
WBC.. 7.4 ...... 8.0 ..... 4 – 11
Hgb.. 11.2 ..... 10.9 ... 14 – 18
Plt.. 281 ...... 301 ... 150 – 400
The only change this week was to bump my immune suppressant (Cellcept) again, this time up to 3 pills (1500 mg) per day. So I’ve gone from 2000 mg in July, to 1500 in August, to 1000 in September, to 500 in October, back to 1000 last week, and 1500 this week. This is quite disappointing to me because it felt like I was really close to getting off my meds, and now I’m guessing it will continue for at least several more months. The doctor tried to be reassuring by telling me that Cellcept is a relatively mild immune suppressant and that people who have had organ transplants have to stay on immune suppressants for the rest of their lives. It didn’t feel terribly reassuring. The doctor doesn’t even know that GvHD is the problem, but looks at the decrease from 2000 mg to 500 mg in 3 months as a rapid taper after a year at 2000 mg. The physician’s assistant said she felt like my previous doctor (who left just as I started the taper) had been quite cautious about reducing the Cellcept because my stem cell donor was female and he feared a more severe GvH reaction. My current doctor just looks at the taper itself and considers it aggressive, even though my body didn’t seem to react badly for 3 months.
My doctor is clearly frustrated, although in a very different way than I am, and says she thinks about my case every day. When I go in on Wednesday of this week, I’m going to ask whether they have consulted with any other specialists. It seems like someone should be able to figure out what’s going on. My blood tests this week include a couple of extras that I think are for checking out other glands like the adrenal and pituitary (or maybe pineal), but it sounds like they are getting kind of far down their list of things they think could be the problem.
Meanwhile, I’m trying really hard to stay positive and not get discouraged; although the truth is that I’m finding it harder and harder. I keep reminding myself how fortunate I am in so many ways, and I know that things could be much worse. I’m just ready to get better. I’m also getting tired of complaining, even though this posting undoubtedly seems full of it.
Any and all prayers and positive thoughts are still very much appreciated.
Love,
Justin
BTW – today marks 15 months from the transplant.
..... 2 wks ago current normal
.....---------- ------- ---------
WBC.. 7.4 ...... 8.0 ..... 4 – 11
Hgb.. 11.2 ..... 10.9 ... 14 – 18
Plt.. 281 ...... 301 ... 150 – 400
The only change this week was to bump my immune suppressant (Cellcept) again, this time up to 3 pills (1500 mg) per day. So I’ve gone from 2000 mg in July, to 1500 in August, to 1000 in September, to 500 in October, back to 1000 last week, and 1500 this week. This is quite disappointing to me because it felt like I was really close to getting off my meds, and now I’m guessing it will continue for at least several more months. The doctor tried to be reassuring by telling me that Cellcept is a relatively mild immune suppressant and that people who have had organ transplants have to stay on immune suppressants for the rest of their lives. It didn’t feel terribly reassuring. The doctor doesn’t even know that GvHD is the problem, but looks at the decrease from 2000 mg to 500 mg in 3 months as a rapid taper after a year at 2000 mg. The physician’s assistant said she felt like my previous doctor (who left just as I started the taper) had been quite cautious about reducing the Cellcept because my stem cell donor was female and he feared a more severe GvH reaction. My current doctor just looks at the taper itself and considers it aggressive, even though my body didn’t seem to react badly for 3 months.
My doctor is clearly frustrated, although in a very different way than I am, and says she thinks about my case every day. When I go in on Wednesday of this week, I’m going to ask whether they have consulted with any other specialists. It seems like someone should be able to figure out what’s going on. My blood tests this week include a couple of extras that I think are for checking out other glands like the adrenal and pituitary (or maybe pineal), but it sounds like they are getting kind of far down their list of things they think could be the problem.
Meanwhile, I’m trying really hard to stay positive and not get discouraged; although the truth is that I’m finding it harder and harder. I keep reminding myself how fortunate I am in so many ways, and I know that things could be much worse. I’m just ready to get better. I’m also getting tired of complaining, even though this posting undoubtedly seems full of it.
Any and all prayers and positive thoughts are still very much appreciated.
Love,
Justin
BTW – today marks 15 months from the transplant.
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