Has anyone donated a liver lobe or a kidney?

[rosiebear]

Long story short, my sister needs a liver transplant. She fell into severe alcoholism after weight loss surgery and will not live long without one. Doctors are assessing whether she is eligible for a transplant.

At almost 58, I’m the only one in my family who is a potential donor. If I can, I will, I think, but I’d love to hear about others’ experiences. We just got the news of the seriousness of her condition last night; H and I will be discussing this tonight.

[mofongo]

PDQ

Fifty is our cut off for living donors. It is a HUGE surgery, cannot compare to donating a kidney. I’m so sorry.

ETA: we see a decent amount of people in this situation after WLS, not sure of all of the medical connections, but there is something. 

[CrazyLucky]

I donated a kidney and if liver surgery is even worse, that's a lot. I'm more than happy to share my experience keeping in mind that it was in 2008 and I'm sure some things have changed.
I don't regret it, but it isn't as easy living with one kidney as I was led to believe (or maybe as I wanted to believe.)

[wanderingback]

Sorry you’re dealing with this.

Are you donating a liver lobe, kidney or both?
Just wondering for clarification since liver and kidney are very different and different experiences.

[SusanBAnthony]

If you don't want to discuss the overall situation, and juat want surgery experience, let me know and i will delete this.

How long has your sister been in recovery? Has she been consistent and serious with her recovery?That feels like a major factor in the decision.

[clairebear]

H donated a kidney several years ago and it was really really hard. It was hard on him physically, emotionally (he was so unwell he did not leave the house for two months) and hard on me as I was left with two young kids and running a house. I will never be donating my kidney unless it's for my kid. It was an awful experience , although I feel like his recovery wasn't the norm. He donated to a 65 year old woman who was in excellent health (besides a non working kidney). She played tennis, pickleball, biked regularly and was super compliant with all health care directives and taking care of herself. We felt confident she would care for the new kidney. It does feel a bit like you are the judge, but I wanted to make sure the donation wasn't in vain. I would definitely make sure you think your sister would take care of her health after surgery. I'm not sure how liver donation compares to kidney donation.... definitely talk to the donor coordinator for details. You my also not be a good candidate. There is so much more than just a blood match. They had psych evals, plus two full days of medical testing at the hospital to make sure the overall health is good enough.

[litskispeciality]

I didn't want to read and not respond. I'm really sorry you even have to face this decision.

I have a friend, and then a separate BIL who've both lost a kidney (although never had a transplant to replace it) for different (medical, non-addiction) reasons. One was removed over 10 years ago, and the other before 2020 (I can't remember the year) so I'm sure technology has changed. It was a long recovery for both. BIL's wife was able to get some time out of work, but commented that she would have asked to place him in a PT rehab if she had to work full time as she couldn't give him proper care. They're both doing well, both working full time now, but there are some life changes.

I would think and hope you the potential donor may be able to speak with a medical professional about the process, recovery, long term effects for yourself etc. before making any final decisions.


I as the potential donor would also want to know how much longer this could potentially give your loved one if everything is successful. Again I don't want to be harsh as I think you're an amazing human being for even considering this. I think it would just factor in to my decision, probably favorably, if the chances were high for a good outcome for the recipient.

[Roc A Bee]

Not a doctor but I have a relative who is part of a major hospital system in their liver/kidney transplant team. I’ve heard liver is much more difficult for both parties than a kidney. And if she’s not in recovery I’m not sure she would be a candidate.

[rosiebear]

Thank you for all of your responses. I would be donating a liver lobe, not a kidney. I had no idea they were so different, because the information pages on hospital websites generally link them together.

To answer a few questions, my sister has been absolutely consumed by her addiction. She has been in residential treatment three times, and has needed medical detox more times than I can count. She is 63 years old.

I’ve written this before, but she never had even a tiny bit of a problem with alcohol before her weight loss surgery. This really did come from out of nowhere and has consumed her life. I don’t know if she can stay sober even after a liver transplant, and if I had to guess, this might be a disqualifying factor for her. But if it’s not, then I don’t know if it should be a disqualifying factor for me.

[scm1011]

I'm sorry you're in this position. I agree I'd make sure your sister was committed to recovery before even considering. A similar situation came up in my family. My cousin donated a part of her liver to her alcoholic brother-in-law (her sister's husband) and he would have died without it as well. I know it was a tough recovery for both, especially the recipient who had a lot of setbacks over the next 1-2 years, but 8 years later his is still sober and his quality of life is very good. Had he not been committed to recovery during those initial years, he absolutely wouldn't have made it and it all would have been for nothing.

I had a kidney removed when I was a kid (due to physical trauma) and have lived a normal life since. Since it was trauma-related, I can't really speak to how a recovery for someone was "only" recovering from the kidney removal would go.

[mofongo]

rosiebear - feel free to PM me if you have any questions, this is what I do.

[thebreakfastclub]

I cannot imagine being in this situation.

My brother died of alcoholism last year in his mid 40s. Not sure exactly what happened to him other than he probably had a heart attack in his bathroom and died on the floor. We found so many huge bottles of vodka upon cleaning out his place.

I don't think he could have recovered from his alcoholism. I don't think he would have ultimately followed through with the protocol needed to undergo the transplant. He would have talked a big game but kept up the drinking in secret. Nobody knew how bad it was.

[sparty04]

This may be a different process, but a family member was potentially in need of a liver and it was a long, detailed process which included sobriety for several months, many doctors appointments and tests, and therapy to be put on the transplant list. They would not have even been considered if they weren't sober. It may be different if it's a relative willing to donate though. So sorry, it's a lot of mental load and what-ifs to carry

[Saudade]

rosiebear, I’m sorry you’re in this situation.

Typically a patient needs to be sober for at least 6 months before they will be eligible to be placed on a transplant list. Unfortunately I’ve had too many patients not make it to that 6 month mark.

[litskispeciality]

OP I also want to add that I didn't mean any judgement toward your family member or you or anyone. I unfortunately understand the assumed shame around addiction even though there shouldn't be any. I think you're an amazing human for even considering your options. I wish you all of the best and hope for a good outcome for your family.

[rosiebear]

Oct 22, 2024 15:35:41 GMT -5 litskispeciality said:

OP I also want to add that I didn't mean any judgement toward your family member or you or anyone. I unfortunately understand the assumed shame around addiction even though there shouldn't be any. I think you're an amazing human for even considering your options. I wish you all of the best and hope for a good outcome for your family.

Thank you for this, but I am not reading your post or ANY of the posts here as judgmental or shaming. I appreciate everyone’s thoughts and I’m like, one day into this, so everything feels overwhelming right now.

[mofongo]

PDQ

Centers are going to vary re: sobriety time. Sometimes people come in critically ill and do get transplanted prior to any treatment.

Multiple detoxes, failed rehab, etc, certainly aren’t great predictors of future success. This is what we would be looking at if someone came inpatient and needed a liver.

Someone needs to do research regarding WLS and alcoholism/liver disease, there is absolutely something there.

[pixy0stix]

There's already research into transference of addiction from weight loss to other avenues. Gambling, alcoholism, drugs, shopping etc. pmc.ncbi.nlm.nih.gov/articles/PMC4430439/

Any addict can start addictive behaviors that weren't their norm following the cessation of their previous addiction.

WLS is unique in that it's hard to get doctors to provide effective counseling after the surgery. Whereas there's ton of resources for recovering alcoholics if they choose to seek counseling.

[Saudade]

Oct 22, 2024 15:49:16 GMT -5 mofongo said:

PDQ

That’s interesting and good to know. I’ve never worked anywhere that has done that. We’ve always had the >6 month requirement regardless of acuity.

[livinitup]

I am so sorry to hear this news about your sister. I wish I had something helpful to add. I can only imagine how much more difficult it is to imagine yourself and your needs in her treatment plan. It must be a difficult time for your whole family. Please give yourself some grace as you learn more. Again, I’m sorry.

[bee20]

Agree this is tough. Addiction runs in my family and I understand the complicated feelings of wanting to help folks we love but having to decide where the right boundary is. I think I would want to understand more before making a final decision and hate playing the role of judge.

Others who do this for work may be able to weigh in, but my understanding is you can ask for more information and even start the testing, but that doesn't commit you to being a donor. I have heard that if you change your mind halfway through they will keep that confidential and just tell the potential recipient that you screened out medically.

[mofongo]

Saudade - yesh, it’s…complicated as you can imagine!

bee20 - that’s accurate about the donor’s ability to change their mind at any point.

[maudefindlay]

Does she want to get the transplant and would she accept one from you? Not necessary to answer, but would be helpful to you to be clear on that.

[hazelden]

You're so nice to consider donating. I'm sorry for everything you and your sister are going through.

My dad has known he'd need a kidney transplant for the last five years, so donating has been on my radar, but it's just not for me.

A few months ago he directly asked me if I'd be willing to donate, but there's just no way I can get there. I think about my kids, the financial impacts, the health impacts, the fact that he doesn't take care of himself like he should. I know I'm a nice person, but I'm not nice enough to open myself up to so many future unknowns, including not knowing if the donation would even work.

I'm confident in my decision not to donate, but I really struggled with letting him know my decision. It felt so final to say no out loud. I thought about speaking with a therapist because I was having some really strong feelings about my dad being sick and asking me to donate a kidney. It was so much to process, I basically talked to anyone who would listen to me as a way to sort out my feelings, including posting about it here.What I finally landed on was that everything about this situation just sucks. It sucks to have a sick family member, it sucks to think about my own well-being/comfort over someone else who is suffering, it sucks to consider the outcome of not donating. I'm so, so sorry you're faced with all of this for your family.

[shinyhappy]

Mofongo-I found the WLS/alcoholism link interesting because my mom had WLS and I found this, so apparently there is a link:

www.healthline.com/health-news/why-drinking-problems-develop-after-weight-loss-surgery

Edit-Association for metabolic and bariatric surgery studied it.

[mofongo]

Oct 22, 2024 17:15:04 GMT -5 shinyhappy said:

Mofongo-I found the WLS/alcoholism link interesting because my mom had WLS and I found this, so apparently there is a link:

www.healthline.com/health-news/why-drinking-problems-develop-after-weight-loss-surgery

Edit-Association for metabolic and bariatric surgery studied it.

I'm gonna read this later. I also wonder if it's metabolized different after.

[darby]

PDQ Next week my sister will be one year out from the day she was admitted to the hospital & not expected to survive. She drank heavily & regularly but never missed work, got a ticket, or even seemed to suffer from hangover symptoms. She just “liked to have a cocktail in the evening.” (Her words.) She had no idea she was suffering from acute liver failure & if she hadn’t already been in the ICU likely wouldn’t have survived the sudden onset of internal bleeding that required a transfusion of more blood than a body usually holds, among other procedures, to stabilize her. She was too sick to leave the hospital. She went through many, many evaluations, both medical & psychological. She had a VERY good medical team & was deemed to be a good candidate for liver transplant. She had to sign some things that she would be in intensive outpatient treatment once released & both her husband & son had to agree to help her & also be deemed good caregivers. For whatever reason none of us were asked to see if we were a match & they did not want to go the family donor route. She got super lucky & received her transplant very, very quickly - just 32 days after she went into the hospital. Her initial recovery was more difficult than most but she got to go home in early 2024. Because of her liver failure her kidneys had to work overtime. They also had to be shut down during surgery. As we’ve been told happens sometimes with liver transplant patients, her kidneys never fully recovered. She then underwent a kidney transplant six months ago. She is now doing amazing. She can never drink alcohol again, but that doesn’t seem to be a problem for her at all. All of this to say…I am sending so many positive thoughts your way. Sometimes things really do work out, in spite of what we hear anecdotally or even expect. The fact that you’re considering this makes you a much better person than I am, as I don’t think I would have agreed if asked. I also want to thank each and every one of you that is an organ donor or donates blood. Without others like you, and two who actually did lose their lives who were just as generous, my sister wouldn't be here today living out a much better life than she was at this time last year. I wish you & your family the best.

[aprilsails]

I looked into it before my friend was declared invalid as a recipient since his cancer had spread. I would have had to have been completely dry (no alcohol) for 6 months before the surgery I believe, and there would be another three months of preparations, so that would have pushed things back to the point where I couldn't help him.

[mofongo]

darby - so glad to hear about your sister’s success:) She was likely to sick for a living donor.

[jlt19]

aprilsails brings up a good point, in that, is there even enough time for you to physically prepare, much less mentally? This has got to be one the hardest choices a person could ever have to make and I’m sorry you’re faced with it. I hope that you find peace in whichever decision you make.