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End of Life issue. Hep C, A1/ Cirrhosis. Pain!
End of Life issue. Hep C, A1/ Cirrhosis/Endoscopy/Low platelette count.Told I would not survive Interferon type treatment.. I am not going for a transplant - going to run with OEM ;) until failure. I also have severepain from back and other problems.Was going to have back surg'y but now told I would survive the operation. .QUESTION is:I have Ultram and Ocy-codone and have been perscribed Dilaudid, which works far better than the rest.. Understanding I don't have very long to live, Sould I not expect that Dilaudid be prescribed now? My Dr's have been reluctant to provide what I take now - because of the endoscopy. I have not yet told my Dr's of my decision formally, to not try for a transplant, but I will bring up the Dilaudid request when I do. What should I expect?
Thank you.The reference to Pot was just to add to a point - I get that super-self-councsis (sip) thing and would rather not use it. Yes - Lactulose (End-Loose, LOL!) and XIFAXAN.
I am not afraid of death either. I am now single and not a great pick :0 with 2 years (or whatever) to go and will be losing my mind for what's left (encephalopathy).
Funny thing though: I am on SSDI and was at the top of my earnings - that is, the income from SSDI is quite good! And as I understand it, if I were to get married, my spouse would collect at the time I passed away - not needing to wait until 62. So, if you can put, ahem, up with me for 2 years, Ladies, you won't have to work after I die! ;)
I think my Gastro is correct when he says the treatment will kill me.
I am not afraid of death either. I am now single and not a great pick :0 with 2 years (or whatever) to go and will be losing my mind for what's left (encephalopathy).
Funny thing though: I am on SSDI and was at the top of my earnings - that is, the income from SSDI is quite good! And as I understand it, if I were to get married, my spouse would collect at the time I passed away - not needing to wait until 62. So, if you can put, ahem, up with me for 2 years, Ladies, you won't have to work after I die! ;)
I think my Gastro is correct when he says the treatment will kill me.
I am not the least bit afraid of death. It can't be that hard since everyone does it.
It's the dying part that scares me. Liver disease is a very very hard way to go - for the one dying and the loved ones watching.
I was transplanted in June 2000 and though I've had my share of problems I'm doing quite well and I'm 10 years out.
I think you should at least explore the transplant option and keep an open mind about it but I'm not you and it's really not my business to advise you.
Regardless of your decision I wish you an easy time and the best of luck.
Mike
It's the dying part that scares me. Liver disease is a very very hard way to go - for the one dying and the loved ones watching.
I was transplanted in June 2000 and though I've had my share of problems I'm doing quite well and I'm 10 years out.
I think you should at least explore the transplant option and keep an open mind about it but I'm not you and it's really not my business to advise you.
Regardless of your decision I wish you an easy time and the best of luck.
Mike
Um… how are they managing the encephalopathy? Are you compliant with the Lactulose? Are you taking Rifaximin?
I imagine there is a balance somewhere with the grass; better get away from it for now, until they get things better managed. There was a musician in Seattle recently that was denied transplant due to testing positive for MJ, even though he had a medical maryjane card. Get new parts installed, then rethink that issue.
Life can be terribly unfair to some people, but it’s the way it is. Do the best you can with what you have, and besides, don’t you want to stick around and see how all this turns out :o)? I’m too damn curious a person, myself :o)!
It’s cool your daughter is around; it’ll make the pcycho-social evaluation for TP much easier. I like your pseudonym, by the way :o)!
Good luck,
Bill
I imagine there is a balance somewhere with the grass; better get away from it for now, until they get things better managed. There was a musician in Seattle recently that was denied transplant due to testing positive for MJ, even though he had a medical maryjane card. Get new parts installed, then rethink that issue.
Life can be terribly unfair to some people, but it’s the way it is. Do the best you can with what you have, and besides, don’t you want to stick around and see how all this turns out :o)? I’m too damn curious a person, myself :o)!
It’s cool your daughter is around; it’ll make the pcycho-social evaluation for TP much easier. I like your pseudonym, by the way :o)!
Good luck,
Bill
Thank you. I am a rather old person, actually ;)
I should have been clearer - sorry all. My long time Gastro doc offered his opinion, i,e, too "sick" to survive an operation or the Interefon and something treatment. I have already spoke with the transplant Dr and the idea is to continue down that path (for the transplant). However, despite Medicare, this is an expensive and tasking, well - task. I do have the choice (The Liver Police?) though, so now the "quality of life" concern...
I should have been clearer - sorry all. My long time Gastro doc offered his opinion, i,e, too "sick" to survive an operation or the Interefon and something treatment. I have already spoke with the transplant Dr and the idea is to continue down that path (for the transplant). However, despite Medicare, this is an expensive and tasking, well - task. I do have the choice (The Liver Police?) though, so now the "quality of life" concern...
I don't understand why you would be ready to give up on life and you're only 53. You may be severely depressed, which would make life seem to not be worth living. When the chemicals in your brain are out of balance, your perspective can be all out of whack. Constant back pain would add to the problem. Please consider having this checked before you make a decision you can't go back on.
Praying for better days for you,
Diane
Praying for better days for you,
Diane
Thank you - and for the quick reply! Doc's tell me pain meds, sleeping pills - even Medical MaryJane*, all are "bad" for me and the reason given was the Ah HA! I meant to say "encephalopathy" - not "endoscopy" LOL! I think there is a message in the mistake ;) So:
The reason given is the encephalopathy. But if I am to, say, check out in 2012 - Mayan calender or not - what is the problem? Note that my daughter (works part time) lives with me.
* 1) No desire to eat. 2) I dislike the effect.
The reason given is the encephalopathy. But if I am to, say, check out in 2012 - Mayan calender or not - what is the problem? Note that my daughter (works part time) lives with me.
* 1) No desire to eat. 2) I dislike the effect.
You are a very young person to give up already if you have a chance of a transplant. We all get to make these decisions for ourselves, but as bill mentioned many people have lived good lives for a long time after transplant.
Whatever happens good luck and post if you need support and advice. I would guess some of the people that have been in your situation will likely add something.
Dave
Whatever happens good luck and post if you need support and advice. I would guess some of the people that have been in your situation will likely add something.
Dave
I can’t comment on the pain management issues; I don’t follow why an endoscopy would have anything to do with dilaudid.
We have a number of transplant survivors in the discussion group here that are living large after the fact; you might reconsider your options.
Welcome to the discussion group, by the way,
Bill
We have a number of transplant survivors in the discussion group here that are living large after the fact; you might reconsider your options.
Welcome to the discussion group, by the way,
Bill
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