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Hepatitis C Living with it, inside prison and out in the world.

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  #1  
Old 12-18-2017, 11:44 PM
JustLilOlMe1012 JustLilOlMe1012 is offline
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Default Transplant-kidney could have Hep C

P is on Dialysis 3x week 4h per session. He is only 42 and ended up with Renal Failure between Diabetes/Drugs/Partying etc. He seems to have reached a place where he realizes that he wants to get out of there alive (7-10 more I think) It seems like they (CDC) is starting to get kidneys like crazy (ok, probably just a little more frequently than normal)

P told me they may have found a kidney for him. Apparently, the very, very long process would be shortened...The problem, the kidney would come from who has Hep-C

I want to support him however possible, and I want to see him outside. I don't have to tell any of you what waiting is like, and though I won't counsel him on this, I would like to know what you think about it.

-K
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Old 12-19-2017, 12:46 AM
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I hear you - it's his life, his decision. Hopefully people who have Hep C and live with it, as well as those who have done the Hep C cure can talk with you about their lives, and what it's like to live with Hep C and what it's like to do the cure. Especially the DOC's requirements before they do the cure.

It's a big risk, but I also understand that dialysis is not a great long term option except where that's the only option available. People have committed suicide because of the pain and problems associated with that level of dialysis. Don't want to scare you about that, but remember, dialysis is not a great long term solution. He's going to run into problems if he already hasn't when it comes to finding veins and keeping them open, huge bruising problems, and all of the problems associated with end stage renal disease.

I'd ask how healthy his liver is. If the idea is transplant, then do the Hep c cure, his liver is a major factor. If he already has liver disease as a result of all of his partying, he needs to know the impact of that liver disease on cure eligibility as well as the impact of hep c on his ailing liver.

He's not in a good place physically. You know this. He knows this. All you can do is love and support him in any choice he makes.

Do suggest he keep a paper and pen handy and anytime a question comes to him, write it down. He can ask his treatment providers those questions, and he can ask you. You can do a bit of Google-fu to really flesh out the answers to his questions.

Always let him know that you support his decision whatever it is, but that you will still react emotionally to those decisions, to his distress - you are human and attached to him. It is hard to see somebody you love struggle physically and with a major life decision.

Make sure you have support outside of him to help you deal with the stress of the situation.

He knows what he's up against and what prison is like for seriously sick people. You know he knows this. All you can do is be there for him. It sucks.
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Old 12-19-2017, 04:55 AM
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Tufahije Tufahije is offline
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There is some quite positive current research concerning patients receiving Hep C positive donor kidneys. With the medications today and the ability to cure the virus in early stages, a high risk kidney can still be transplanted and work well. It is not ideal but the studies show positive results. Google and you will see.

Infectious disease specialists know how to handle this, especially those with a focus on transmission of solid organ transplants. However, this answer is based on someone on the outside and I am not sure of the quality of care inside.

Any tx nephrologist will tell you tx offers much better life spans. But, the life post - tx is not a cake walk either. I would have concerns of being on immunosuppressives in a prison environment. Your loved one would have to be extremely, extremely, extremely careful with all the bugs in institutions. I have gone in the role of visitor to 2 institutions and it made me a nervous wreck [with precautions!]

I understand your fears; they are right and reasonable! It is a serious and life - changing decision. But, in the end, high risk kidneys are proving to work out [again, google the studies.] and my larger concern would be post - tx in that kind of environment.

You are free to message me for further insight.
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Old 12-24-2017, 03:00 PM
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I was a neph APRN for >11 years and here are my thoughts:

1. Yes, hep C+ transplant kidneys are easier to obtain. However, you then must undergo treatment for hep C after transplant - will prison system be as mindful as a private practice as to timing of meds?

2. Cleanliness and the ability to recover after transplant includes multiple lab draws, med titration, visits to Tx Nephrologist - is the prison system able and willing to do this?

3. In my area, the wait for a non-Hep C+ deceased donor is 5 years depending on several factors. However, hep C+ donors, older donors, those donors who died with other medical issues do decrease the waiting time.

Best wishes for whatever he/she chooses.
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Old 12-25-2017, 08:30 AM
xolady xolady is offline
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Personally I wouldn't do it. After seeing my husband die from what should have been a curable cancer. I would have never allowed his surgery as it was botched from the beginning and he suffered for over a year with bad negligent deplorable conditions. Never would I let anyone under go any type of transplant surgery in that situation. Also who's to say he will actually get hep c treatment after surgery!!! I pray he can get out on compassionate release then get treatment.
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Old 12-25-2017, 11:19 AM
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Quote:
Originally Posted by xolady View Post
Personally I wouldn't do it. After seeing my husband die from what should have been a curable cancer. I would have never allowed his surgery as it was botched from the beginning and he suffered for over a year with bad negligent deplorable conditions. Never would I let anyone under go any type of transplant surgery in that situation. Also who's to say he will actually get hep c treatment after surgery!!! I pray he can get out on compassionate release then get treatment.
If he takes a kidney from somebody with Hep C, he will get Hep C from that kidney. The actual organ is infected and there's nothing they can do to prevent transmission from that organ to the rest of the body. All they can do from that point is treat his Hep C or cure him.

I'd love to say gut it out for the rest of that sentence with dialysis, but that is an awful long time to be dealing with so many dialysis procedures and the consequences of dialysis, not to mention all the other problems associated with a transplant can also be associated with dialysis - neglect, unclean conditions, etc, etc, etc. dialysis is not an easy experience, especially for that long.

Flip a coin. He's got a Hobson's Choice ahead of him.

Let us know what he decides and how he's doing with everything. Sometimes it helps marking the time in writing to an outside source.
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