Month 16, part C
Believe it or not, I lost another 12 pound of fluid in the past week. That’s 24 pounds in 2 weeks and about 27 in 3 weeks. My counts were much like before with the WBC high due to Prednisone, and who knows why the hemoglobin is up as high as it’s been for a while. My blood pressure is also a bit elevated due to the Prednisone, and the doctor considered prescribing meds for that, but decided to wait and see how it does with reduced steroid levels.
...... last week current normal
..... ---------- ------- ---------
WBC.. 10.8 ..... 11.9 .... 4 – 11
Hgb.. 10.0 ..... 11.8 ... 14 – 18
Plt.. 343 ...... 265 ... 150 – 400
The CT scan from last week showed nothing remarkable, so there is still nothing to explain my low pulse oximetry. After shoveling snow today, I can tell that I don’t get winded nearly as easily as a week or two ago, although I’m not back to normal yet.
After thinking about things, I developed a theory that if I am suffering from some chronic GvHD that is attacking connective tissue and caused the fluid retention, that it started back well before the immune suppressants were reduced. I remember wondering why I started gaining weight again when I was really not eating much and actually getting some exercise. I now suspect that I was starting to retain fluids then and that it just accelerated when the immune suppressants were scaled back and it had a chance to really ramp up. My weight now is about what it was when I left the hospital and before I started to gain weight. Of course, back then, I had no reason to suspect what was going on.
The other thing I started thinking about was that since my particular form of GvHD seems to be pretty rare, which I infer from the fact that the doctors were at a loss for such a long time, and there seems to be no positive test for connective tissue being attacked, weaning me off of the immune suppressants is going to be tricky. How will we know how quickly to wean and how will we know if the GvHD is gearing up again. I asked my medical staff about this and they said it really is kind of trial and error. We reduce the meds, and if the edema symptoms return, we bump them back up. It could really be 2 steps forward and 1 step back for quite a while. On the other hand, it is possible that the symptoms won’t return and we can take more of a straight line reduction of meds. I told the doctor that I would vote for the latter course. The doctor said her plan is to reduce the Prednisone to a low maintenance level of something like 5 mg/day (I’m down to 20 mg/day now from 40 last week), and then start to reduce the Cellcept again.
It’s amazing how much better I feel with the 27 excess pounds gone. I’m still left with considerable cramping, especially of the hands, some shortness of breath, and taste buds that are still really letting me down. However, they’re bearable and I’m still hoping they’re temporary.
Thanks for listening. Tune in again next week.Love, Justin
...... last week current normal
..... ---------- ------- ---------
WBC.. 10.8 ..... 11.9 .... 4 – 11
Hgb.. 10.0 ..... 11.8 ... 14 – 18
Plt.. 343 ...... 265 ... 150 – 400
The CT scan from last week showed nothing remarkable, so there is still nothing to explain my low pulse oximetry. After shoveling snow today, I can tell that I don’t get winded nearly as easily as a week or two ago, although I’m not back to normal yet.
After thinking about things, I developed a theory that if I am suffering from some chronic GvHD that is attacking connective tissue and caused the fluid retention, that it started back well before the immune suppressants were reduced. I remember wondering why I started gaining weight again when I was really not eating much and actually getting some exercise. I now suspect that I was starting to retain fluids then and that it just accelerated when the immune suppressants were scaled back and it had a chance to really ramp up. My weight now is about what it was when I left the hospital and before I started to gain weight. Of course, back then, I had no reason to suspect what was going on.
The other thing I started thinking about was that since my particular form of GvHD seems to be pretty rare, which I infer from the fact that the doctors were at a loss for such a long time, and there seems to be no positive test for connective tissue being attacked, weaning me off of the immune suppressants is going to be tricky. How will we know how quickly to wean and how will we know if the GvHD is gearing up again. I asked my medical staff about this and they said it really is kind of trial and error. We reduce the meds, and if the edema symptoms return, we bump them back up. It could really be 2 steps forward and 1 step back for quite a while. On the other hand, it is possible that the symptoms won’t return and we can take more of a straight line reduction of meds. I told the doctor that I would vote for the latter course. The doctor said her plan is to reduce the Prednisone to a low maintenance level of something like 5 mg/day (I’m down to 20 mg/day now from 40 last week), and then start to reduce the Cellcept again.
It’s amazing how much better I feel with the 27 excess pounds gone. I’m still left with considerable cramping, especially of the hands, some shortness of breath, and taste buds that are still really letting me down. However, they’re bearable and I’m still hoping they’re temporary.
Thanks for listening. Tune in again next week.Love, Justin
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