11-03-2022, 09:50 PM
I wanted to give an update on how things are going on my 'journey' with the fight against the big C.
Looking back before the transplant, I was told by my transplant team that everything I had been through up until that point was regular season. The transplant and months and years after is the playoffs. Initially I shrugged it off, like "Ok, what do you know?" sort of attitude. Well, they knew lol, and were 100% right. I can say since the transplant in late July 2021, it is definitely not what I expected.
Up until this July of this year, it was basically a 1 step forward, 2 steps back for that entire year. Back at Easter of this year for example, I was in the hospital for a week from a rare fungal pneumonia I developed from a little cough a few weeks prior. As my Doctor said, I'll always be a (bone marrow) transplant patient, meaning my immune system will always be a weak one. It took me about 3 months to recover from that, using walker at times and a cane, but a cool cane though, not an old man cane.
Nowadays I am in the longest stretch of relatively good health since the pneumonia. I still cant get my baby shots again, at least until I have been stable for a longer period of time. The original baby vaccines got wiped out by the transplant process. I do wear a mask when Im around a lot of strangers, like in grocery stores. I do however go out to ear, but at select times when it wont be as crowded. It's just the way it is for someone that has to take penicillin twice a day for the rest of the their life.
Last but not least to make this post relevant, I am on some pretty pricey medicine. I have pills shipped to me from another city that cost about $16,000 a month. Insane. But they are to fight the GvHD going on. GvHD is Graft vs Host Disease. Basically its a DNA warzone going on between my donor's cells and mine that didn't match. And if left unchecked can become fatal in one way or another. So morale of the story is, make sure your health insurance is always up to date! I'm now roughly a $2 million dollar patient since all this began.
At some point I think I may write about my journey in a more proper fashion. I am just getting back to the point where I can do it. My postings on The Board here plummeted in the last 20 months, so this is why.
So yeah, don't take anything too lightly with your health. If it's out of the ordinary and/or not going away, go see your doctor. One thing I have learned is there are almost an infinite amount of things that can go wrong with us as any given time. Take care and thanks for all the comments!
(Basic recap since diagnosis)
- 9 total weeks in hospital
- countless chemo infusions and a few blood infusions in first 5 months.
- 9 bone marrow biopsies, and a liver biopsy through the neck
- 2 lumbar injections in lower spine
- 3 months of weekly phlebotomies
- numerous CT scans
- forgot more prescriptions that I was on than I can remember
- was a type 2 diabetic for many many months due to the steroid prednisone, so insulin shots daily smh
Looking back before the transplant, I was told by my transplant team that everything I had been through up until that point was regular season. The transplant and months and years after is the playoffs. Initially I shrugged it off, like "Ok, what do you know?" sort of attitude. Well, they knew lol, and were 100% right. I can say since the transplant in late July 2021, it is definitely not what I expected.
Up until this July of this year, it was basically a 1 step forward, 2 steps back for that entire year. Back at Easter of this year for example, I was in the hospital for a week from a rare fungal pneumonia I developed from a little cough a few weeks prior. As my Doctor said, I'll always be a (bone marrow) transplant patient, meaning my immune system will always be a weak one. It took me about 3 months to recover from that, using walker at times and a cane, but a cool cane though, not an old man cane.
Nowadays I am in the longest stretch of relatively good health since the pneumonia. I still cant get my baby shots again, at least until I have been stable for a longer period of time. The original baby vaccines got wiped out by the transplant process. I do wear a mask when Im around a lot of strangers, like in grocery stores. I do however go out to ear, but at select times when it wont be as crowded. It's just the way it is for someone that has to take penicillin twice a day for the rest of the their life.
Last but not least to make this post relevant, I am on some pretty pricey medicine. I have pills shipped to me from another city that cost about $16,000 a month. Insane. But they are to fight the GvHD going on. GvHD is Graft vs Host Disease. Basically its a DNA warzone going on between my donor's cells and mine that didn't match. And if left unchecked can become fatal in one way or another. So morale of the story is, make sure your health insurance is always up to date! I'm now roughly a $2 million dollar patient since all this began.
At some point I think I may write about my journey in a more proper fashion. I am just getting back to the point where I can do it. My postings on The Board here plummeted in the last 20 months, so this is why.
So yeah, don't take anything too lightly with your health. If it's out of the ordinary and/or not going away, go see your doctor. One thing I have learned is there are almost an infinite amount of things that can go wrong with us as any given time. Take care and thanks for all the comments!
(Basic recap since diagnosis)
- 9 total weeks in hospital
- countless chemo infusions and a few blood infusions in first 5 months.
- 9 bone marrow biopsies, and a liver biopsy through the neck
- 2 lumbar injections in lower spine
- 3 months of weekly phlebotomies
- numerous CT scans
- forgot more prescriptions that I was on than I can remember
- was a type 2 diabetic for many many months due to the steroid prednisone, so insulin shots daily smh
“Don't give up. Don't ever give up.” - Jimmy V
![[Image: 4CV0TeR.png]](https://i.imgur.com/4CV0TeR.png)
