I got a call from the Nurse Practitioner...
My chemical levels are a bit high so they are having me lower the tacrolimus daily dosage from 3 mg twice a day down to 2 mg twice a day.
The theory is that the tremors may stop or at least decrease in frequency with the dosage lowered.
It would be nice.
I was also asked to move from taking oxycodone's to 600mg ibuprofen on the idea that pain will go down as inflamation decreases.
I'm not really sold on the idea that ibuprofen will do much but it is a wait and see I guess.
Friday, August 26, 2011
Dana Farber visit of the week
Went in for the usual blood draw and a visit with the nurse practitioner.
I don't have the exact counts in front of me but they are looking very good according to the nurse.
She apologized regarding the hand tremors but re-affirmed that my immuno-suppression drug tacrolimus was the source. We wont be looking to get off that until at least my 100th day post transplant.
The cuticles on each nail are starting to hyper-pigment to the point they are turning black.Nurse says the nails could remain black a very long time and that it is even possible to lose the nails. Lovely.
There is concern about Graft Versus Host Disease and my joint pain. If one of the blood levels comes back high, I may get steroids to help.
My doctor decided to not do steroids last week but may change his mind based on this weeks number.
Should know later today.. I hope.
I don't have the exact counts in front of me but they are looking very good according to the nurse.
She apologized regarding the hand tremors but re-affirmed that my immuno-suppression drug tacrolimus was the source. We wont be looking to get off that until at least my 100th day post transplant.
The cuticles on each nail are starting to hyper-pigment to the point they are turning black.Nurse says the nails could remain black a very long time and that it is even possible to lose the nails. Lovely.
There is concern about Graft Versus Host Disease and my joint pain. If one of the blood levels comes back high, I may get steroids to help.
My doctor decided to not do steroids last week but may change his mind based on this weeks number.
Should know later today.. I hope.
Friday, August 19, 2011
Today's Dana Farber visit
The levels are continuing to improve.
White Blood Cell Count : 7.5 Reference Range: 3.8 to 9.2
Hematocrit Count : 35.5 Reference Range: 38.4 to 48.2 (currently low)
Platelet Count : 138 Reference Range: 155 to 419 (currently low)
My hands continue to tremor pretty intensely. A good object lesson on this was that I had a really hard time putting toothpaste on my toothbrush. Wow.. Practically had to pin my arms to my chest to make progress. The tremors are a side effect of one of my meds and should go away once I'm done with them. Of course, that will take about a month and the tremors are likely to get stronger.
The all-around itchiness and intense joint pain are apparently precursors to graft versus host disease. I have oxycodone for the pain and, bless her, the nurse supplied me with better meds for the itches. Using steroids to alleviate the problems was discussed but it is dangerous to do this close to my transplant date.Out of all this, the itch is the worst!
White Blood Cell Count : 7.5 Reference Range: 3.8 to 9.2
Hematocrit Count : 35.5 Reference Range: 38.4 to 48.2 (currently low)
Platelet Count : 138 Reference Range: 155 to 419 (currently low)
My hands continue to tremor pretty intensely. A good object lesson on this was that I had a really hard time putting toothpaste on my toothbrush. Wow.. Practically had to pin my arms to my chest to make progress. The tremors are a side effect of one of my meds and should go away once I'm done with them. Of course, that will take about a month and the tremors are likely to get stronger.
The all-around itchiness and intense joint pain are apparently precursors to graft versus host disease. I have oxycodone for the pain and, bless her, the nurse supplied me with better meds for the itches. Using steroids to alleviate the problems was discussed but it is dangerous to do this close to my transplant date.Out of all this, the itch is the worst!
Thursday, August 18, 2011
Just when you think things are going your way - wrong
Starting last night, the joint came back with a vengeance.
To say it hurt is an understatement. Even with oxycodone helpers, the pain was still very much there.
Okay.. I can deal with the pain but now we have a brand new symptom.
My hands wont stop shaking and they feel a little tingly.
I sent a message to my doctor and nurse practitioner but no response back yet.
May not really be worth chasing them today anyway since I go to Dana Farber tomorrow for my weekly checkup.
Hope this nothing. I really don't need another complication.
Wednesday, August 10, 2011
Doctors visit - discharge day +11
Went to Dana Farber for blood work and a visit with the doctor.
Over-all, things went pretty well.
White cell and platelet counts continue to rise.
The hematocrit levels went down a little bit but they tend to fluctuate a bit.
The doctor states I am on track and numbers are about where they should be.
If things continue as they are now, I will have to go back on a monthly basis instead of weekly.
That would be great!
Over-all, things went pretty well.
White cell and platelet counts continue to rise.
The hematocrit levels went down a little bit but they tend to fluctuate a bit.
The doctor states I am on track and numbers are about where they should be.
If things continue as they are now, I will have to go back on a monthly basis instead of weekly.
That would be great!
Saturday, August 6, 2011
Had first doctors office follow-up on Friday
The visit was with a nurse practitioner, not the doctor, but things went well.
My blood counts are exactly where that should be considering I am 6 days out from hospital discharge.
The white count dipped about 10 points but this is normal considering they are not being goosed by the nupragen shots.
Platelet counts are doing extremely well and whole blood counts are holding steady to a slow climb.
Energy levels are still low but my mouth sore issues are almost completely gone.
Now if I could just get my tastebuds back to normal.
My blood counts are exactly where that should be considering I am 6 days out from hospital discharge.
The white count dipped about 10 points but this is normal considering they are not being goosed by the nupragen shots.
Platelet counts are doing extremely well and whole blood counts are holding steady to a slow climb.
Energy levels are still low but my mouth sore issues are almost completely gone.
Now if I could just get my tastebuds back to normal.
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