Another Stage 3c - My Story

[Tarc79]

Thanks, RJKD! I really appreciate your input! I know about T cells. Here is my thought on that. I already have a low immune system right now after HDCs. Plus, I got on remission with surgery. So, if there were some active cells around, they would have showed themselves already in the last two years. Now as far as other cancers go, I think EVB virus induced (attacking B cells) lymphoma could be a concern. I am sure they will evaluate this risk and discuss potential prevention. All this said though, my MELD score is not very high, (low 20s) and I have a blood type O. So, that puts me in a tough spot to even get a liver, even if I am listed....

Btw, I accept all the risks cancer coming back, etc. 3 year mark is 9 months away. If it comes back, it comes back and that will be the end any way. I'd rather die with Option B than A. My 90-day survival is only 75% under current circumstances.

[sanis]

Tarc

first of all I am glad you only had a "false alarm" because of the AFP increase. (which seemed to be minor to me above)

If i understood well and your current 90 days survival chance is really only 75% (are you sure?) then it is a very strong PRO argument for option B. The strongest imaginable argument.

I would try to make this thinking as rationalistic as possible and make the decision based on numbers.

Below study investigated the cancer ocurence chance among transplant receivers (also liver). the chance is 2-4 fold of that of healthy people.. For you we could with 4-5 fold due to HDC.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3310893/

I would define the survival chance of option B based on studies like this and compare that to 75%. If the difference is less than 10% it is no brainer to me.

Maybe it is already thought through this in this way just thinking out loud

[Davepet]

Tarc,
My gut feeling was to go with option B, since your description of your current situation sounds pretty difficult to deal with to me. However it sounds like you've kind of adapted & accepted the problems & may be afraid to lose what you still have to yet another procedure(s). I cant possibly imagine being in your shoes. You have been on one he!! of a ride already & have dealt with it better than I think I could have.

It sounds to me like you still want to keep fighting & try to get as close to "normal" as possible. I'd say as long as the stats aren't overwhelmingly against you, take the chance.Yeah, you'll be kicking yourself if it goes south, but if you don't, you'll be kicking yourself down the line anyway for not doing it. It's the "what ifs" that get, after all.

Maybe, just maybe, you won't need to kick yourself at all, though.

Good luck whatever you decide.

Dave

[Tarc79]

Thanks, Dave. You've guessed it right. However, based on my MELD score, I have a 90-day mortality rate of %25. I've taken statistics to know that I am not going to be around for very long with the status quo, and my limited time is spent on dialysis. Therefore, I am leaning towards Option B. That said, they may tell me that I am not a candidate, and that would leave me with Option A... I don't know what I would do at that point.. Become a nihilist I guess...

[Mike]

Not to over simplify things as this is obviously a difficult decision. You know what status quo is but what would it be worth to be able to run free of dialysis and ammonium intoxication for 2 weeks, a month, three months, a year? If that time free is appealing then I would measure that time in the quality and not quantity that it contains. I think I would go with option B. The other thing to consider is that finding a match and even getting on a list may take time and if you wait too long to make the decision can things change and take that option B away?

Best of luck on coming to the decision that is best for you. I know it must be mind and heart wrenching.

Mike

[Tarc79]

So, I got my first call on Wednesday. They said there was a match but I was a substitute, meaning there was another patient higher on the list. That patient ended up getting the liver. I was left with the waiting game. But, I think it is getting close. I started a gofundme campaign to get some support for life with a transplant. I shared a very brief history of what I went through as well. I am not sure if this is the right platform for this. So, I will keep it short. You can find my story here. https://www.gofundme.com/selman039s-liver-transplant

[biwi]

Seems appropriate here. I'm sure being that close and missing this one solidified your opinion on whether you want a transplant or not, given the emotions you probably went through after the phone call!

edit: it looks like your gofundme is doing very well!

[Tarc79]

Given how unlucky I am cancer-wise, I am extremely lucky and grateful to have wonderful friends and family who came out to support me.

[Trekga]

Wishing you the best! Hopeful you will be able to receive a new liver & kidney.

[JoeTheAstronaut]

Good on you, man!! Made a small donation and will try to spread the word. Wish you the best!!

[Tarc79]

3 years ALL CLEAR!

[biwi]

3 years ALL CLEAR!

Awesome! I can't wait for my 3 year all clear. That is when my life insurance will drop to more reasonable pricing. I signed up 1.5 years out and did find someone who would cover me, but it is very expensive.

[Mike]

3 years ALL CLEAR!

Awesome News!!! Congratulations!!!

Mike

[Trekga]

great news!!!

[Tarc79]

I was temporarily delisted because of potential bone marrow issues. A biopsy later, I am back on that transplant list. I let things go on their own pace at this point. I do not know what tomorrow will bring but I am still hopeful of a better future. By the way, I am 39 months all clear! I cannot believe it has been more than 4 years since I got permanently and totally disabled.