Tuesday, December 27, 2011
GVHD .. branching out I think
Woke up with the stomach in knots and some serious hand joint pain. I've been expecting the joint pain but the stomach issue is new. Hoping this is not a new branch of the Graft Versus Host Disease. Nails are also darkening and showing a growth line again. Wonder if that is related to the meds. i am still waiting to get the prescription for my tacrolimus cream due to approval delays with the insurance company.he steroid lotion i was given for the skin related GVHD symptoms and that has made a huge difference.
Tuesday, December 20, 2011
Dana Farber visit not exactly what I had hoped
My blood levels (red, white, platelet) continue to improve but there is bad news. I have the beginnings of GVHD which accounts for the skin sores/rashes all over plus excima like cracking on finger tips. I was supposed to go off my tacrolimus (anti rejection drug) today but that is delayed now. New meds, a steroid cream and tacrolimus cream, are being introduced to help.
I was also informed to expect arthritic symptoms across all joints.
Something to look forward to I guess.
Monday, December 12, 2011
Dana Farber tomorrow
Oddly enough I am looking forward to going to Dana Farber tomorrow morning.
I am very curious to see where the current numbers are.
In a few categories, I was at or approaching low normal which is a nice change of pace.
I am very curious to see where the current numbers are.
In a few categories, I was at or approaching low normal which is a nice change of pace.
Saturday, December 10, 2011
New developments
I have not been posting much lately because there isn't much change.
The old/black nail locations continue to grow out but the nails are super brittle.
The other thing that's new are circular sores on my arms and legs.
Each is about a quarter to half dollar in size and is shaped almost like ringworm.
The problem is dry skin.
Need to get past the problem by using moisturizer religiously but hate doing it.
Ah well.
Better get to it else the wife will start yelling.
The old/black nail locations continue to grow out but the nails are super brittle.
The other thing that's new are circular sores on my arms and legs.
Each is about a quarter to half dollar in size and is shaped almost like ringworm.
The problem is dry skin.
Need to get past the problem by using moisturizer religiously but hate doing it.
Ah well.
Better get to it else the wife will start yelling.
Monday, November 21, 2011
Wednesday, November 16, 2011
Where we are for levels
My wife did a comparision between now and before the transplant and they are on a steady rise.
When I went into the hospital, before the transplant, levels were...
white blood cell-2.5
hemoglobin-11.8
hemotacrit-35.8
platelets-41
As of yesterday, white blood count is now at a low normal of 4.3 (the lowest being 3.8 before it's considered a abnormal low).
Hemoglobin is 12.9 (with 13.2 being the low normal), hemotacrit is 36.9 (with 38.4 being the low normal) and platelets are now 120 (with 155 being the low normal).
When I went into the hospital, before the transplant, levels were...
white blood cell-2.5
hemoglobin-11.8
hemotacrit-35.8
platelets-41
As of yesterday, white blood count is now at a low normal of 4.3 (the lowest being 3.8 before it's considered a abnormal low).
Hemoglobin is 12.9 (with 13.2 being the low normal), hemotacrit is 36.9 (with 38.4 being the low normal) and platelets are now 120 (with 155 being the low normal).
Tuesday, November 15, 2011
Today was a very good doctor day!
We had a VERY good day at the monthly Dana Farber levels check and consult. White blood cell counts are in the low but normal range and hematocrit/platelet counts continue to rise. What was cool though is that I've progressed enough that several meds are no longer needed. Additionally, the tacrolimus medication i take for anti-rejection has also been dosage reduced. Very happy about that one because the tac is why my hands tremor.
Monday, October 24, 2011
Its always something new
Looks like I might be progressing to a new stage.
Heartburn is more common and I now think pepperoni is too spicy. Pathetic.
I also am noticing a new form of discoloration on the nails,
The black is fading away but the true cuticle and lunula are turning a chalky white.
I see my local oncologist on Wednesday so it will definitely be brought up.
Pain in the hands is sporadic but really intense.
Pain has also moved to my feet and knees but that could just be the.plantar fasciitis I've always had.
Hard to tell what causes what.
Heartburn is more common and I now think pepperoni is too spicy. Pathetic.
I also am noticing a new form of discoloration on the nails,
The black is fading away but the true cuticle and lunula are turning a chalky white.
I see my local oncologist on Wednesday so it will definitely be brought up.
Pain in the hands is sporadic but really intense.
Pain has also moved to my feet and knees but that could just be the.plantar fasciitis I've always had.
Hard to tell what causes what.
Wednesday, October 12, 2011
Today's visit - good news
Today's visit at Dana Farber was pretty good.
My levels continue to slowly rise and I have hit my 90 days out from transplant.Woo hoo!!!!
I can now somewhat expand my eating options (aka... pepper, i missed you so) and even order in food.
Additionally, my tacrolimus anti-rejection drug is being reduced from 1.5mg to 1mg which means I should see a reduction in hand tremors.
Biggest news is with the eyes. It is definitely not GVHD. If it were, things would be steadily getting worse and they are not. Sometimes it is not bad. Other days, a crowbar is needed to open the eyes. In any case, no GVHD for now which is huge.
My levels continue to slowly rise and I have hit my 90 days out from transplant.Woo hoo!!!!
I can now somewhat expand my eating options (aka... pepper, i missed you so) and even order in food.
Additionally, my tacrolimus anti-rejection drug is being reduced from 1.5mg to 1mg which means I should see a reduction in hand tremors.
Biggest news is with the eyes. It is definitely not GVHD. If it were, things would be steadily getting worse and they are not. Sometimes it is not bad. Other days, a crowbar is needed to open the eyes. In any case, no GVHD for now which is huge.
Sunday, October 9, 2011
The eyes have it
Woke up this morning and my eyes were practically welded shut. After prying them open, I noticed the face and upper/lower lids were very swollen. I've had this before but it seems to getting worse. Something to talk about when I go to Dana Farber this Wednesday. I've been reading on the web about this and it can get really nasty. If treated with steroids, my face will get really bloated plus a chance of cataracts or glaucoma. Backing away from any more web searches till I know more. Too much information can be a bad thing.
Wednesday, September 28, 2011
Latest update from Dana Farber
I went to Dana Farber today and the the news is largely good.
Blood levels are doing well.
My only new thing is my eyes and face are getting puffy.
The nurse practitioner I spoke to is not 100% on the cause.
It could be graft versus host or I could simply be developing allergies after the transplant.
She is evaluating my drug levels and will give a call tomorrow based on the results.
Depending on the results, I may be getting my tacrolimus dosage lowered.
That will be nice because it will help lower my tremors.
Blood levels are doing well.
My only new thing is my eyes and face are getting puffy.
The nurse practitioner I spoke to is not 100% on the cause.
It could be graft versus host or I could simply be developing allergies after the transplant.
She is evaluating my drug levels and will give a call tomorrow based on the results.
Depending on the results, I may be getting my tacrolimus dosage lowered.
That will be nice because it will help lower my tremors.
Sunday, September 18, 2011
News update
Hi everyone,
I haven't updated in a bit because there hasn't been much new to report.
Pain is gone now which is always nice.
Finger nails are beginning to turn black. Between that and the bald head, I'm beginning go goth. :)
Tremors are sill there but they are something I will have to live with while on the medications.
Hair is continuing to jump ship. Eyebrows and eyelashes are getting very thin for example.
The biggest news is that I got the Hickman line removed from my chest.
I haven't updated in a bit because there hasn't been much new to report.
Pain is gone now which is always nice.
Finger nails are beginning to turn black. Between that and the bald head, I'm beginning go goth. :)
Tremors are sill there but they are something I will have to live with while on the medications.
Hair is continuing to jump ship. Eyebrows and eyelashes are getting very thin for example.
The biggest news is that I got the Hickman line removed from my chest.
Friday, August 26, 2011
Update to todays Dana Farber visit
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.
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.
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.
Thursday, August 4, 2011
Sunday, July 31, 2011
Hospital Discharge date +1
First off, {{Glad To Be Home}} !!
First nights dinner a prime example of how screwed up my mouth is. Cathy, at my request, made her sheperds pie. Normally a favorite of mine but taste was just off. Got to admit the potato was not too bad but everything was just wrong.
It was really nice to sleep in my own bed for a change and not get nudged awake every few hours for vitals checks. Felt a little weird but trust me, I adjusted.
The worst affront from my taste bud issues was my coffee. Nooooooo!! It tasked like dark roasted formaldehyde. Come on!!
A nursing service came by this morning to show Cathy how to saline and heparin flush my lines. While she was here, asked her to remove the bandages from the line site that was removed a couple days ago.
Got to admit that hurt quite a bit but it's over.
Napped quite a bit today.
First nights dinner a prime example of how screwed up my mouth is. Cathy, at my request, made her sheperds pie. Normally a favorite of mine but taste was just off. Got to admit the potato was not too bad but everything was just wrong.
It was really nice to sleep in my own bed for a change and not get nudged awake every few hours for vitals checks. Felt a little weird but trust me, I adjusted.
The worst affront from my taste bud issues was my coffee. Nooooooo!! It tasked like dark roasted formaldehyde. Come on!!
A nursing service came by this morning to show Cathy how to saline and heparin flush my lines. While she was here, asked her to remove the bandages from the line site that was removed a couple days ago.
Got to admit that hurt quite a bit but it's over.
Napped quite a bit today.
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