what's it like for a live liver donor?

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Alcie
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Date Joined Oct 2009
Total Posts : 4897
   Posted 6/14/2017 9:10 AM (GMT -6)   
My son is offering to donate to his dad. I'm concerned it may cost him his job, as he has to remain in good shape for it. I'd prefer to donate myself but am afraid I'll be refused, over 70.

ppm guy
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Date Joined Apr 2010
Total Posts : 1079
   Posted 6/14/2017 4:34 PM (GMT -6)   
hi alcie,
while my knowledge of living donor transplant is not great, I have chatted here with a few donors.
Since your asking about the donor. the donor has to pass a list of qualifications. the mortality rate for donors, has decreased to 1%, over the last decade.. the donors liver generally regenerates within 2 months. Recuperation to return to work would depend on the type of work..i would think that any employer or corporate manager would be happy to support your son.

With the demand for livers being greater than the supply, living donor TPs save lives. 1700 liver patients die each year waiting. When I think about it, live donation saves 2 lives.

Wish I could help you more. if I can help you research anything, ask away
best to you Alcie

MamaLama
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Date Joined Oct 2010
Total Posts : 4790
   Posted 6/15/2017 12:31 PM (GMT -6)   
Alcie,

I know no living liver donors, but know one of our members, now deceased, had a lobe removed, not for live transplantation, but because it was riddled with liver cancer. She recovered quickly. For her that removal was a bridge to transplant which gave her time to wait for a donor liver. Her lobe regenerated in a short time. She passed for complications other than the excision of the lobe.

The gift of life is everything. My partner's doner is remembered every day Mike lives. I do not know if there is an age at which you age out of a living donor program. Only certain hospitals do this type of transpant. We would all benefit from your regular posting on this important topic.

Some countries use live liver donation extensively. Look up some sites in India. I am making no recommendation here, rather poing out that is is being done successfully in clinics in many place.

Hugs,

Mama Lama
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.

Alcie
Veteran Member


Date Joined Oct 2009
Total Posts : 4897
   Posted 6/16/2017 8:30 AM (GMT -6)   
Well, it doesn't matter now. Hubby is in too bad condition to even have any type of surgery, let alone a liver transplant. If his gastroenterologist had sent him to the liver specialist 2 years ago when this all started ... Too late now.

ppm guy
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Date Joined Apr 2010
Total Posts : 1079
   Posted 6/16/2017 11:10 AM (GMT -6)   
can you get a 2nd opinion? I would want the word of a qualified hepatologist.
Sorry about your situation..

Alcie
Veteran Member


Date Joined Oct 2009
Total Posts : 4897
   Posted 6/17/2017 12:36 PM (GMT -6)   
Very good liver specialist. Hubby is very emaciated, 40 lbs or more underweight. I'm educated, believ the doc. Doc did refer us to the transplant team, but if I can't get hubby to eat lots more, lots more, good food, not just pasta, he has no chance of recovering.

The good news yesterday was he doesn't have any new esophageal varices, stomach and small bowel look great.

Hard to understand how a non-drinker, non-hepatitis, only a little overweight person can suddenly get a simple gut septicemia that could put him into cirrhosis.

The encephalopathy seems suddenly much better today. Maybe good news is healing. It sure was for me!

ppm guy
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Date Joined Apr 2010
Total Posts : 1079
   Posted 6/17/2017 5:34 PM (GMT -6)   
excellent news.. the transplant team is the best place to get answers. And hopefully the answers are the right ones for your hubby.

hoping all goes well, and please let us know whats happening..

Alcie
Veteran Member


Date Joined Oct 2009
Total Posts : 4897
   Posted 6/21/2017 4:07 PM (GMT -6)   
Transplant evaluation will be scheduled soon. Awaiting "fiscal" evaluation. Medicare will pay, supplement should also.

Encephalopathy seems to yo-yo even during a day. Confusion in the AM, OK through afternoon, then more confusion in evening. I'm exhausted trying to keep up on top of my own work and health issues.

ppm guy
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Date Joined Apr 2010
Total Posts : 1079
   Posted 6/21/2017 7:58 PM (GMT -6)   
My brother has trouble with HE also. He takes 2 20ml doses of lactilose and 2 550mg xifaxan daily. When he is having trouble, his dr allows him to take more lactulose. His dr wants him having 3 bowel movements a day.

Great to hear, he's getting evaluated. Do you know his meld score yet?
Let me know how things are moving along. You're a strong woman, handling all you do..

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4790
   Posted 6/22/2017 7:26 PM (GMT -6)   
Alice

there is search bar up above the posts

you can put in a key word and a lot of old posts come up

lots of info on to evaluation experiences, he, xifaxin, etc.

or put in my screen name and look at my posts from 2010 and 2011...Mike was so awful...we were losing him...but, not so fast...the to guys saved my guy.

hugs

mama lama
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.

Alcie
Veteran Member


Date Joined Oct 2009
Total Posts : 4897
   Posted 6/23/2017 4:06 PM (GMT -6)   
Xifaxan was ordered but taking over a week to get to pharmacy. Hubby got another pint of lactulose although I already have 2 in the house.

I'm having worse severe back pain with nausea since yesterday, couldn't get up cook his egg, pack his lunch or prepare dinner. (He could burn water.) There is food in the fridge he can heat up. My pain med didn't come in to the pharmacy today either. Hopefully tomorrow afternoon.

Storm Cindy is passing through here (yes, all the way up in PA) with tornadoes, severe storms.

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4790
   Posted 6/23/2017 8:53 PM (GMT -6)   
You certainly are having a rough patch.

Maybe this weekend the two of you can crawl in bed and sleep a whole bunch. Catch up.

The Xifaxan can be a problem with the insurance, post again if they give you a bunch of grief about it...we have all been through the fight to get it at a reasonable price.

Hugs,

Mamam Lama
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.

Alcie
Veteran Member


Date Joined Oct 2009
Total Posts : 4897
   Posted 8/4/2017 4:52 PM (GMT -6)   
Hubby is now getting ascites drained every week. He is really bad about taking his meds. I don't think he's taking the Xifaxan at all because he had diarrhea with the first pill. He is convinced a transplant is a cure and he'll be just fine with it. I think he'll waste the liver from not taking the anti-rejection meds. He won't read the binder full of info the docs sent - particularly the part with the side effects of those meds!

Is he better off avoiding a transplant or getting it? What's it like being a recipient? What's it like being a donor?

I've read in his patient info that he won't be allowed to drive for 2 months. I don't think he realizes he can't just go back to what he was like before his liver went bad (bacterial or viral infection, not hepatitis, but not identified).

Some people here seem to be in decent shape just taking lactulose, and Xifaxan and maybe a diuretic. I don't think Hubby is taking enough meds, but he doesn't know and won't ask. Well, testing starts next week. It'll be exhausting for me, but I have to go and find the answers because he won't listen.

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4790
   Posted 8/5/2017 8:08 AM (GMT -6)   
Okay, Alcie, this is what I have lived:

HE is horrible. When the mind is overwhelmed wtih unprocessed wastes that the liver can no longer process, that stuff wanders everywhere in your blood, and to the brain. The affected person can be unreasonable, tired to the point of coma, unreasonable, unable to sleep at night, unreasonable to the point of down right ugly. Mike made me cry almost every day. Some of our members have told crazy stories about HE husbands. One wife got a call at work that hubby was walking their horse on a major highway. His side of the story..."it was too bumpy in the paddock."

And they should not be driving at all NOW, if their HE makes them impaired. Mike hated that and resisted. I would not get into the car with him. We took 2 cars to doctors appointments until the doc told him if he was in a wreck and the insurance people heard he was driving against dr. orders, the insurance would not pay and he would lose everything. Also, get any weapons out of the house...Amendment 2 can wait until after transplant...those badly affected by HE can be a danger to themselves an others.

Hubby may not be complying with his med program because of the HE (remember the unreasonable symptom above). Lack of compliance can get someone kicked off the transplant list. If there is any chance YOU can organize and monitor the meds, it is the only way this may work out for him. Family support is HUGE with TP centers...that they know the person will be complaint. There is such competition for livers, they want to give them where they will do the most good.

If a person is still drinking alcohol, they have to go to a program and get evidence of AA attendance. If you get liver cancer, and the tumors get too big, the chance of post TP issues increases and a person can become ineligible. Yes, the TP can save a person, but they have to pass a psych test too...will the person take their meds, etc. If they are likely not to take them...they may lose a place on the list to a compliant patient..

My partner Mike is compliant. If they say take your anti-rejection meds on a regular schedule, like 7AM and 7PM, that's it. He will never miss that. He was in the hospital with a heart thing a while afterTP and he had a FIT until he got the nurses to give him his prograf exactly at 7AM and 7PM!

Best to your family...

Mama Lama
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.

Alcie
Veteran Member


Date Joined Oct 2009
Total Posts : 4897
   Posted 8/5/2017 8:49 AM (GMT -6)   
Thanks! I have a 2 part/week long pill container which I will fill. That way I can keep track of what I give him at home. But he keeps some of his pills at work.

Yes, he still works. I got him to quit the night job, but he still works 6 days a few hours. I think he didn't believe me when I told him he wouldn't be allowed to drive for 2 months after surgery, or he plans on doing it anyway. The part about the insurance not paying is one I can use. I'll get hold of the keys. He can't get to the job on the old tractor! (Joke from country song)

So far his brain is good. He does take the lactulose, and it's working. I can tell if he's missed a dose. I feel OK about his driving for now.

I'm wondering if he's in good enough shape for transplant. He's shriveled away to skin and bones. He takes naps at work. But he never had hep C or any of the others, never drank. He was overweight but not obese until he got sick and now weighs as little as I do, and I'm thin!

I guess I'll know next week after the testing. That's going to be hard on me. I've got too many problems - broke my neck and have a hard time walking, recently broke ankle and had more surgery on it making it harder to walk, bad scoliosis,post polio, etc. ad nauseum.

Thanks for being around for support. I wonder if there are local support groups. Hmmm. I get lots of help from my breast cancer group, so I should look around.

ppm guy
Veteran Member


Date Joined Apr 2010
Total Posts : 1079
   Posted 8/5/2017 1:21 PM (GMT -6)   
We have always been a caretaker support family. It seems like half of our posts come from family and significant others, trying to cope with our loved ones liver disease.

I also have a brother who wont take his lactulose and xifaxan, because it causes diarrhea. When he has to go out somewhere, he skips his meds. A couple times he got confused and was missing for a couple days. Either a hospital or police will call me when he is picked up. Luckily he can always remember my phone number. My brother has been denied a transplant, his liver cancer got worse.

We are always here

Alcie
Veteran Member


Date Joined Oct 2009
Total Posts : 4897
   Posted 8/9/2017 5:16 PM (GMT -6)   
We're in the middle of transplant testing now. One more day to go. It's as hard on me, aged caretaker, as the patient. I'm exhausted.

So far, he has low MELD, because he's NASH. Apparently that's usual. But he won't survive long like this and is very miserable with a giant beach ball for a belly. His muscles are like threads. But no leg swelling.

At least he's taking the lactulose. I can tell when he skips it. He's more confused every week. I'm working on the family to get him to stop working, but he's one of those whose work is his life. There really IS life at home. We have grandkids, a big property, things he likes here. He just has left me to do all the physical and managing work for the last 40 years. I have a housekeeper out of necessity, and am hiring more people to help with maintenance. But I go to bed tired every night, without being HIS caretaker.

We have a donor, or he wouldn't even be considered for transplant. I'd rather not use one of my children that way, but he volunteered. I'm 20 years too old, but I'd do it if allowed.

The final hurdle will be the stress test. I think he will pass.

ppm guy
Veteran Member


Date Joined Apr 2010
Total Posts : 1079
   Posted 8/10/2017 11:16 AM (GMT -6)   
Hi Alcie,
I can only imagine how you must feel. Having two family members,having major surgery. The possibilities.

On the other hand, your hubby can be transplanted, at a much lower meld. And you can schedule the surgeries..It reduces the risk of major health risks associated with waiting. And are considered to have better outcomes. ( mayo, ummc, hopkins etc).

Let us know how the evaluation goes

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4790
   Posted 8/11/2017 3:56 PM (GMT -6)   
Alcie,

This has come together quickly...and a date likely near.

The hardest part for me was the thought of putting a very sick person under the anesthesia...and not knowing the outcome. The statistics are very good these days and I knew he could not last long in the condition he was in...no quality of life at all. But he came through with flying colors.

My favorite color was PINK. His skin went from sick sick sick GRAY and YELLOW to healthy looking in one night. And his HE went totally away the minute that new liver starting working its magic.

Post TP there is some ICU time which can be scary, but most do well. And most are home recouperating after 5 - 7 days, some sooner. Lots of pills to remember...they want to stave off infection, so antiviral, anti-fungal, and antibiotics. They don't want any rejection to high doses of anti-rejection meds and the EVIL prednasone for a while. Mike's blood sugar got wonky and he had to inject insulin for about 3 months and then that resolved on its own. No high sugar readings. The cancer went away, of course, tossed out the window with the bad liver and it has never returned. Sleeping stuff, pain stuff..both of which he hated and stopped taking as soon as possible.

When are they talking about doing the surgery?

Hugs,

Mama Lama
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.

Alcie
Veteran Member


Date Joined Oct 2009
Total Posts : 4897
   Posted 8/12/2017 12:14 PM (GMT -6)   
Testing is finished. Now waiting for the results to be finalized. They kept us informed all along, so only one thing left, the Dobutamine echo cardiac stress test. They stopped the test with rate of only 127. I wonder if that is high enough for someone in 70s.

No way is he going to get a deceased donor. MELD too low.
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