Jalepeno Poppers
Once again, I have been neglecting my blogging duties. I tend to seriously crash starting in the afternoon, and it just gets worse into the evening. I try in the morning to get everything I need/want to do in the day done, and blogging doesn't make the short list very often.
Fatigue, nausea, and just feeling like crap in general. Like a bad cold.
I have no desire to eat, and it doesn't help that my taste buds are not working.
Good news is that I am loosing a lot of extra weight. This is a great diet plan.
Unfortunately, the Dr.'s do not share my diet plan view, and they want me back on the prednisone (15mg daily) because they feel that the symptoms are from from chronic GVHD.
I really didn't want to go back on the prednisone, as I feel the symptoms of the GVHD are less then the symptoms from the prednisone, but after a few really bad evenings I relented. The numbness in the hands and feet are a bit worse now, and it is affecting my sugar levels again (insulin). I am going to try and manage it with diet alone (low carb), and so far that has been working.
The evenings have been a bit better, and I have some appetite, and some working taste now, perhaps due to the prednisone, perhaps just a coincidence. Jalepeno Poppers were about the only thing that was working before - not much to live on.
My creatinine levels are still high (160's - should be under 100) so they are still concerned about that.
My blood product levels are high enough (100+) that they feel I can stop the IV based anti-pneumonia drug, and switch back to the pill form. The pill version can cause my hemoglobin and platelet counts to drop.
I have been allowed to get my bloodwork done at a local clinic on Thursday, to check the creatinine and blood levels. I have fluids available at home if I need to do some extra flushing. If everything is moderately OK from the tests, I will be allowed to wait until next Wednesday before returning to the LBMT clinic, and a late afternoon appointment with Dr. Nevill.
If not, then it's back in on Monday, and then Wednesday again. It's the gas and parking costs that piss me off more then anything. The drive itself, even in rush hour, is pretty relaxing, and it's not like I am doing anything productive otherwise.
So, there it is. Feeling a bit better in the last few days then I have been over the last few weeks, but all the stories about long term chronic GVHD symptoms have me worried. I have been, and still feel, pretty damn lucky though.
Fatigue, nausea, and just feeling like crap in general. Like a bad cold.
I have no desire to eat, and it doesn't help that my taste buds are not working.
Good news is that I am loosing a lot of extra weight. This is a great diet plan.
Unfortunately, the Dr.'s do not share my diet plan view, and they want me back on the prednisone (15mg daily) because they feel that the symptoms are from from chronic GVHD.
I really didn't want to go back on the prednisone, as I feel the symptoms of the GVHD are less then the symptoms from the prednisone, but after a few really bad evenings I relented. The numbness in the hands and feet are a bit worse now, and it is affecting my sugar levels again (insulin). I am going to try and manage it with diet alone (low carb), and so far that has been working.
The evenings have been a bit better, and I have some appetite, and some working taste now, perhaps due to the prednisone, perhaps just a coincidence. Jalepeno Poppers were about the only thing that was working before - not much to live on.
My creatinine levels are still high (160's - should be under 100) so they are still concerned about that.
My blood product levels are high enough (100+) that they feel I can stop the IV based anti-pneumonia drug, and switch back to the pill form. The pill version can cause my hemoglobin and platelet counts to drop.
I have been allowed to get my bloodwork done at a local clinic on Thursday, to check the creatinine and blood levels. I have fluids available at home if I need to do some extra flushing. If everything is moderately OK from the tests, I will be allowed to wait until next Wednesday before returning to the LBMT clinic, and a late afternoon appointment with Dr. Nevill.
If not, then it's back in on Monday, and then Wednesday again. It's the gas and parking costs that piss me off more then anything. The drive itself, even in rush hour, is pretty relaxing, and it's not like I am doing anything productive otherwise.
So, there it is. Feeling a bit better in the last few days then I have been over the last few weeks, but all the stories about long term chronic GVHD symptoms have me worried. I have been, and still feel, pretty damn lucky though.
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