Happy Holidays!
It’s kind of been a real shitty last few weeks. The GVHD battle still rages on.
Gastrointestinal issues, rashes on my chest and back, and just general fatigue.
I’m pushing through it, as it’s all part of the process. I hate taking more meds than I need to, but I gave in and started taking the OxyCodone for the pain in my gut. Man what a relief. Not only for me, but for the people around me!
The good news, my blood labs are looking great and my hair is growing back!
It’s a marathon, and I’m still plodding along.
Tuesday, December 24, 2019
Wednesday, December 11, 2019
Day +140
Bleh...Not a good week and a half.
Another GVHD flare up. This time hitting my eyes, as well as my GI tract.
It’s getting better but still not feeling 100%.
I’ve lost about 15 lbs from this last battle. It’s not like I’m not eating, but apparently just not eating enough. It’s not a diet plan I’d recommend. Going back to multiple high calorie meals to see if that helps.
The good news is that all my blood labs are looking good.!
Another GVHD flare up. This time hitting my eyes, as well as my GI tract.
It’s getting better but still not feeling 100%.
I’ve lost about 15 lbs from this last battle. It’s not like I’m not eating, but apparently just not eating enough. It’s not a diet plan I’d recommend. Going back to multiple high calorie meals to see if that helps.
The good news is that all my blood labs are looking good.!
Wednesday, December 4, 2019
Day +133
Yuck
Perhaps I spoke too soon. Started to get what I thought were graph versus host symptoms over the weekend (gastrointestinal issues, dry / red eyes, sore throat, weight loss, fatigue)
Turns out it may be a virus, and Mayo is running some tests.
Had to bump up the steroids a bit (.5mg), got a prescription for my dry eyes, and maybe something for the stomach irritation. This sucks. It's like 5 steps forward - 3 steps back.
The good news, ( which makes the doctors think it's not GVHD) , is that all my labs are on the up and up.
Sucks not having a working immune system!
It didn't stop me from getting Xmas light up. ( no ladder climbing of course)
Perhaps I spoke too soon. Started to get what I thought were graph versus host symptoms over the weekend (gastrointestinal issues, dry / red eyes, sore throat, weight loss, fatigue)
Turns out it may be a virus, and Mayo is running some tests.
Had to bump up the steroids a bit (.5mg), got a prescription for my dry eyes, and maybe something for the stomach irritation. This sucks. It's like 5 steps forward - 3 steps back.
The good news, ( which makes the doctors think it's not GVHD) , is that all my labs are on the up and up.
Sucks not having a working immune system!
It didn't stop me from getting Xmas light up. ( no ladder climbing of course)
Sunday, December 1, 2019
Day +130
All is well!
Triple lumen portal has been removed, and platelet counts are slowly increasing.
Now it’s just weekly labs, Dr. follow ups and other tests.
Still need to avoid crowds, watch what I eat and just be generally careful about not exposing myself to germs! Not sure when I’ll ever get off of the handful of meds I’m taking.
Unless any setbacks occur, I’m thinking about ending this blog soon.
Triple lumen portal has been removed, and platelet counts are slowly increasing.
Now it’s just weekly labs, Dr. follow ups and other tests.
Still need to avoid crowds, watch what I eat and just be generally careful about not exposing myself to germs! Not sure when I’ll ever get off of the handful of meds I’m taking.
Unless any setbacks occur, I’m thinking about ending this blog soon.
Sunday, November 17, 2019
Day +116
Doing great! Just waiting for these platelets to bounce back. Last lab results on Tuesday did show they were on the rise. (They were at 30 on Tuesday up from 16, still a fall risk) All other lab results look good.
Since all is on the up and up, I’m finally getting my three lumen power port removed on Wednesday. I’ll get a bag of platelets before the procedure. I’ve had this thing on me since July! I don’t really notice it any more except for having to cover it before jumping in the shower, and the weekly dressing changes / line flushes.
Now it’s just routine labs, and visits with the primary care doctor. Another pulmonary function test in a couple weeks. Still on a handful of meds every day. Probably will be for awhile, until my immune system comes back.
Since all is on the up and up, I’m finally getting my three lumen power port removed on Wednesday. I’ll get a bag of platelets before the procedure. I’ve had this thing on me since July! I don’t really notice it any more except for having to cover it before jumping in the shower, and the weekly dressing changes / line flushes.
Friday, November 8, 2019
Day +107
Doing well!👍
Blood labs (metabolic panel & CBC) are looking great. Platelets are slowly coming up, but since they are still under 50, I’m still a fall and bleeding risk. So I can’t do my usual risky behavior!
The slow recovery could now be the scarring in the bone marrow, which will go away in about a year or so. Think about it as a rock garden, can’t really grow anything there, but my body is trying.
Hemoglobin at 11.6! (Normal range is 13.2 - 16.6. ) Cant wait to be normal! ( insert your own joke here 😁)
Still on 2 visits a week at mayo, while they monitor. Mostly for labs, talk to the doctor, and dressing changes for the power port.
Energy is great, and I’m back down to my fighting weight. 💪
Marathon no where near over, but feeling great at the current pace!
Blood labs (metabolic panel & CBC) are looking great. Platelets are slowly coming up, but since they are still under 50, I’m still a fall and bleeding risk. So I can’t do my usual risky behavior!
The slow recovery could now be the scarring in the bone marrow, which will go away in about a year or so. Think about it as a rock garden, can’t really grow anything there, but my body is trying.
Hemoglobin at 11.6! (Normal range is 13.2 - 16.6. ) Cant wait to be normal! ( insert your own joke here 😁)
Still on 2 visits a week at mayo, while they monitor. Mostly for labs, talk to the doctor, and dressing changes for the power port.
Energy is great, and I’m back down to my fighting weight. 💪
Marathon no where near over, but feeling great at the current pace!
Saturday, November 2, 2019
Day + 101
Yep 101 days!
All is well.
Dr Palmer found out that an anti-fungal med was causing the thrombocytopenia. (Eating my platelets).
There’s only a 10% chance that the med would do that(voriconazole), and apparently I fell into that 10%. (BTW I don’t have fungus, it’s just to prevent any fungal infection. What’s funny is I used to take Fluconozole, the same stuff my doggos take for their valley fever.)
Still battling some GVHD symptoms, but nothing major. Platelets are now on the rise, and hemoglobin (red cells, are in double digits!)
No extra Salt now, and steroids have been decreased so I’m not feeling or looking like a bull walrus,
The natural diaretic I’m taking is working great (Uva Uris leaf, Dandelion leaf, ginkgo, horse chestnut and Hawthorne Berry). Ya, it makes me pee a lot but it’s better than the alternative.
Daily excersize helps with that and the occasional “roid rage”. The kids just look at me and laugh and say, “uh oh, he’s raging again”
I should be getting my multi-luman power port out soon, as soon as my platelets stabilize.
My hair is coming back too! Not sure what color yet, Lauri is waiting for the blonde hair and blues eyes.
All is well.
Dr Palmer found out that an anti-fungal med was causing the thrombocytopenia. (Eating my platelets).
There’s only a 10% chance that the med would do that(voriconazole), and apparently I fell into that 10%. (BTW I don’t have fungus, it’s just to prevent any fungal infection. What’s funny is I used to take Fluconozole, the same stuff my doggos take for their valley fever.)
Still battling some GVHD symptoms, but nothing major. Platelets are now on the rise, and hemoglobin (red cells, are in double digits!)
No extra Salt now, and steroids have been decreased so I’m not feeling or looking like a bull walrus,
The natural diaretic I’m taking is working great (Uva Uris leaf, Dandelion leaf, ginkgo, horse chestnut and Hawthorne Berry). Ya, it makes me pee a lot but it’s better than the alternative.
Daily excersize helps with that and the occasional “roid rage”. The kids just look at me and laugh and say, “uh oh, he’s raging again”
I should be getting my multi-luman power port out soon, as soon as my platelets stabilize.
My hair is coming back too! Not sure what color yet, Lauri is waiting for the blonde hair and blues eyes.
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