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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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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
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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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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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Old 03-11-2018, 09:29 PM
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I would not do it either. From what I know anyway, a kidney transplant (assuming it's successful) would only last 10-20 years max. But with Hep C as an added complication, I don't think it is worth the risk.

(Correct me if I'm wrong on those facts, I got that info from loose discussions I've had with nurses in a government-funded care home, FYI).
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Old 03-12-2018, 04:36 AM
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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.
I totally understand what getting a diseased kidney means, most people don't. I'm sure some prisons are offering better health care then what my husband had, but for the majority no. All that aside in normal conditions transplants are still a crap shot. The conditions of prisons and bad health to begin with make a transplant an extremely risky proposition. I do know what the risks for all are and I wouldn't chance that kind of surgery in prison.
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Old 03-12-2018, 07:50 AM
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Besides some good posts, there is a lot of misinformation in this thread. I have gone through the process, had the tests, signed the forms to not accept an extended criteria kidney [High KDPI in new terminology].

Point one: average life span of a transplanted kidney varies. A Hep C donor would be deceased and as a result, the average is just 8 - 12 years of function. 20 years is extremely long even for a very healthy organ. One thing to consider is this inmate’s age as kidneys with a higher KDPI go to older patients and those with lower KPDI go to younger patients. As a result, this kidney is expected to have a shorter lifespan in general.

Point two: The research shows that Hep C has been cured in patients involved in studies who received such kidneys. The patient is put on a routine of anti-viral medications right away. In some, the drugs are started before the surgery takes place. It was recently in the news that 10 patients at John Hopkins University received such transplants and each were cured of any Hep C infection. As a result of this study, the team deemed Hep C kidneys „ safe “ for transplantation.

A further study was conducted at University of Pennsylvania and achieved the same results. Each patient contracted Hep C but a 3 month course of a specific medication cured the virus.

There are a lot of peer reviewed articles from medical journals that discuss this issue and they are easily accessible online.

Currently, I am on a similar protocol from viruses from my donor [not Hep C] but the difference is that these cannot be cured but managed. It is not the end of the world and I feel healthy.

Hep C kidneys, as part of extended criteria, would not be offered to all but as I said older patients who are healthy for transplant but can expect a shorter life for the kidney in general.

The issue in a prison setting would NOT be the kidney with Hep C but rather the aftercare and the cost. We have noted on this board time and time again the dire state of prison health care. For cost, there have been quotes that 3 months of the specific anti - viral to rid Hep C costs ~ 90 - 100.000 $ USD. This is a cost on top of the anti - rejection drugs required for life. Secondly, the inmate patient would require extensive monitoring and lab testing to ensure not only that his numbers are good, the kidney works, the medication levels are in target but that the Hep C medication is doing its job as well. I question how this would be done promptly and on schedule in such a setting.

Anyone with viral concerns must be followed by infectious diseases specialists who focus on solid organ transplantation. These are experts up to date with the latest research and medication regimes that work. They would review the file of the patient and deem the risks adequate or not and they seem to agree that this virus and transplant is o.k. Conversely, will an inmate be followed as closely as needed in the first year as required by these specialists? I doubt it.

Another point is that the other anti - rejection drugs lower your white cell count and subsequently make you more susceptible to infection. Infection leads to rejection if not treated quickly. Rejection can be handled now in most cases but again, question the quality of prison health care.

Due to my youth, I did not have to consider the extended criteria concerns but based on scientific evidence, and I am taking strong anti - vitals currently, I would feel safe with a Hep C organ. If I was older, on dialysis for a long time and this was my option, o.k. The larger concern is the lack of adequate after care to ensure that the inmate patient receives the proper drugs, monitoring and follow up care. It is at this point things could go terribly wrong.

Regular person? Worth a shot. Inmate? Would not do it.
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Old 03-12-2018, 08:19 AM
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Thank you, Tufahije! Nice explanation that few of us would have experience with.
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Old 03-12-2018, 07:21 PM
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I would not do it either. From what I know anyway, a kidney transplant (assuming it's successful) would only last 10-20 years max. But with Hep C as an added complication, I don't think it is worth the risk.

(Correct me if I'm wrong on those facts, I got that info from loose discussions I've had with nurses in a government-funded care home, FYI).
This is not true about a kidney transplant lasting only 10-20 years. And even if it did, it's 10-20 years more than he has now.
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Old 03-12-2018, 07:27 PM
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Originally Posted by Tufahije View Post
Besides some good posts, there is a lot of misinformation in this thread. I have gone through the process, had the tests, signed the forms to not accept an extended criteria kidney [High KDPI in new terminology].

Point one: average life span of a transplanted kidney varies. A Hep C donor would be deceased and as a result, the average is just 8 - 12 years of function. 20 years is extremely long even for a very healthy organ. One thing to consider is this inmate’s age as kidneys with a higher KDPI go to older patients and those with lower KPDI go to younger patients. As a result, this kidney is expected to have a shorter lifespan in general.

Point two: The research shows that Hep C has been cured in patients involved in studies who received such kidneys. The patient is put on a routine of anti-viral medications right away. In some, the drugs are started before the surgery takes place. It was recently in the news that 10 patients at John Hopkins University received such transplants and each were cured of any Hep C infection. As a result of this study, the team deemed Hep C kidneys „ safe “ for transplantation.

A further study was conducted at University of Pennsylvania and achieved the same results. Each patient contracted Hep C but a 3 month course of a specific medication cured the virus.

There are a lot of peer reviewed articles from medical journals that discuss this issue and they are easily accessible online.

Currently, I am on a similar protocol from viruses from my donor [not Hep C] but the difference is that these cannot be cured but managed. It is not the end of the world and I feel healthy.

Hep C kidneys, as part of extended criteria, would not be offered to all but as I said older patients who are healthy for transplant but can expect a shorter life for the kidney in general.

The issue in a prison setting would NOT be the kidney with Hep C but rather the aftercare and the cost. We have noted on this board time and time again the dire state of prison health care. For cost, there have been quotes that 3 months of the specific anti - viral to rid Hep C costs ~ 90 - 100.000 $ USD. This is a cost on top of the anti - rejection drugs required for life. Secondly, the inmate patient would require extensive monitoring and lab testing to ensure not only that his numbers are good, the kidney works, the medication levels are in target but that the Hep C medication is doing its job as well. I question how this would be done promptly and on schedule in such a setting.

Anyone with viral concerns must be followed by infectious diseases specialists who focus on solid organ transplantation. These are experts up to date with the latest research and medication regimes that work. They would review the file of the patient and deem the risks adequate or not and they seem to agree that this virus and transplant is o.k. Conversely, will an inmate be followed as closely as needed in the first year as required by these specialists? I doubt it.

Another point is that the other anti - rejection drugs lower your white cell count and subsequently make you more susceptible to infection. Infection leads to rejection if not treated quickly. Rejection can be handled now in most cases but again, question the quality of prison health care.

Due to my youth, I did not have to consider the extended criteria concerns but based on scientific evidence, and I am taking strong anti - vitals currently, I would feel safe with a Hep C organ. If I was older, on dialysis for a long time and this was my option, o.k. The larger concern is the lack of adequate after care to ensure that the inmate patient receives the proper drugs, monitoring and follow up care. It is at this point things could go terribly wrong.

Regular person? Worth a shot. Inmate? Would not do it.
I am glad you posted this. My mother is a kidney transplant recipient as is my Uncle (on my father's side and his has been I'm sure 20 years at least or close to it). I recently saw a story about the successes of transplants even with patients who had other illnesses like Hep C, or other diseases. So, your explanation is fantastic. Too many people get sicker and die on dialysis and have no hope. Unfortunately however, even with a transplant the after-care is tremendous. My brother was the donor for my mother 6 years ago. The recovery period itself, was much harder on my brother than my mother and the hospital did a poor job in preparing and educating my brother on this fact. It's a shame because this took place at one of the best hospitals in the country. Regardless, the after-care for my mother is non-ending. The medicines, and monitoring, and diet is tiring. Unfortunately, she doesn't take as good of job caring for it as we would like, (ie watching her weight, and eating healthy), but she is at least good about making sure she doesn't eat undercooked food, etc. because all of those could cause a lot of problems with the kidney. Anyone going through a transplant has to really be educated on the pros/cons and be prepared to take the entire thing seriously.
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Old 03-13-2018, 10:21 AM
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And thank you, rockchalk, for saying this too!

I cannot stress enough how intensive the after care is and especially in the early months after a transplant. You did a good job illustrating this with the case of your mom. Jokingly, I have said the surgery was the easy part and the hospitalisation was simple too. It was a controlled environment, doctors came to see more than once a day, my medications were put in front of me and testing was done easy cause I was in bed!

However, the aftercare outside of hospital [and for the foreseeable future !!!] is demanding. I go 2x / week for labs and see the doctors also. Medications must be taken on time and in the same way. Also, until a transplant is stable, the medications fluctuate all the time. How closely would this be monitored in a prison health care setting!

I am glad you mentioned diet and nutrition as well as this is very important. Transplant nutritionists will come up with required amounts of protein and calcium that a particular patient needs due to the healing process / effects of drugs. For example, osteoporosis is a side effect of the medications. How can one ensure this kind of diet will be adhered to for an inmate?

Let us speak of the drugs for a moment too. The side effects are serious and include forms of cancers. How will this be monitored with lacklustre health care? Second point is that though the drugs prevent rejection of the new organ, they exhibit nephrotoxicity long term. This is why it is important for close after care monitoring so that the best level of drugs is in the blood and not too much to cause these side effects.

Nephrotoxicity results in kidneys not lasting forever but we do hope that they can last 20 years or the rare cases over 30 years! I was told due to my youth I will probably need multiple transplants but it is my goal to take care of what I have.

While Hep C kidneys may not make a major impact on the overall waiting lists, those that are usually discarded, as well as other organs needed, can make a difference to those willing to give it a try. Some years ago, I was surprised to learn how well HIV+ organ recipients do with transplants, so who knows what will come next in research?

Rockchalk, you are very right to remind us all that transplant must be taken seriously. It is a major life change. It is not simply the case of receiving a kidney, or any organ, and living as before. Transplant is not a cure, only a treatment, and with it comes its own problems.

Best regards to your transplanted family members and to your brother!
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Old 03-13-2018, 11:03 PM
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Wait so Hep C can't be cured if it originated from you, but if you transfer it via kidney, then someone else can (potentially) recover from it?
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Old 03-14-2018, 05:17 AM
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No. Hep C can be cured in individuals with the virus as well. In recent years, there have been steady advances in a family of drugs called DDA [ direct acting antivirals ]. These drugs have shown to be effective in some genotypes or all genotypes of the virus. They are usually a 12 - week / 3 month regime. The most known is Harvoni [ lots of ads and marketing ], Sovaldi, but the one used in the kidney transplant study was called Zepatier. The difference is cost as some reach ~ 100.000 $ for a regiment while newer drugs are halving that cost.

These newer drugs have „cure rates” that range from 90 - 100 % in comparison to the old standard of ribavirin + interferon which had rates of slightly half of that.

For those cases left uncured, doctors suggest another round of drugs, a different drug already available or waiting for newer drugs in development, as there are many. The issue for a lot of people is not the cure per say but the costs and their insurance / health care systems.

To make a long story short, yes, those individuals infected with the Hep C virus have good chances of being cured with the new drugs available. These same drugs are given to transplant patients who receive a Hep C organ. It is the same regim to cure the virus.

*** speaking as public health person and not a transplant patient in this reply.
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Old 03-14-2018, 05:05 PM
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how long does a kidney transplant typically last then?
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Old 03-14-2018, 05:41 PM
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If you read above, 20 years, rarely, 30.
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Old 03-14-2018, 06:41 PM
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I know I wrote too much so I will make it simple here:
Deceased donor: 8 - 12 years
Live donor: 10 - 15 years.

That is the window most often told but there are those where it lasts a few months, 2 years and others that rarely reach 30 years. It is super to see those reaching 20 years. When it comes to transplants, every one is different. However, it is important to live a healthy life with good nutrition, rest and activity, and most important, steady with medications, to offer the kidney the best chance.

Since this is prison related on a prison web site, one must question if an inmate can achieve this.
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