Hello Im new to this forum. My question is has anyone had an experience with a 2nd liver transplant? My husband had a liver transplant but now after 18 months the bile ducts are plugged up and 2 transplant surgeons at reputable hospitals are stating that he will need another transplant in the near future.
Any other experiences like this?
Thanks.
Unfortunately re-transplant isn't uncommon and blocked duct issue is very often the cause. I know the transplant unit over here in Scotland was doing research into why this happens so often. 5% of transplants done at the Scottish centre are retransplants.
Sometimes they can prolong the life of the current liver by putting in a stent, similar to the TIPSS procedure but this can often lead to the side effect of HE even in a person without cirrhosis.
I know of people with who have been retransplanted 2 and even 3 times so if retransplant is needed medical teams will really look after your hubby. I believe he'll need the best liver going if it's second time round so normally a brain deceased complete liver.
Wishing you both the best of luck, fingers crossed this time he keeps the new liver for longer and gets on the road to recovery.
Katie
Thanks. This is such a stressful time. I thought that once he was transplanted all would be well but this is not the case. Hes got an excellent hepatologist and transplant team. Its the waiting that is terrible. Any ideas to cope with the uncertainty and anxiety?
No, my hubby was on the transplant list for 10 months back in 2014-15 (first and so far only listing), in his case his bloods improved which took him out of the qualifying for criteria for transplant. In our case his need was only ever deemed border line so although we lived waiting for the call (bags packed, plans made and staying close to home) we were unlikely to ever get the call.
Part of what cushioned the blow of delisting was actually knowing that transplant isn't always the golden ticket we all hope for, a lot of folks have issues post transplant and I don't think you can ever truly say that's it done and dusted because something can always jump up to bite you on the behind even years down the line. I am a member of another UK based liver site and we tend to hear of all the multiple transplants on there. At hubbies transplant we were made aware of one patient who had been transplanted and even before wakening from the first op had had to be retransplanted as the first had gone pearshaped really quickly.
Fingers crossed your hubbies wait will be a short one and this time recovery will be smoother and longer lasting.
Katie
Hi Katie- thank you for your kind words and info. In my husband's case, the hepatologists and transplant team have confirmed that the graft had failed and it is just a matter of time before he will need another transplant. We do not know when but being proactive and getting the testing done in case things go south.
The stress is tremendous. How did you deal with the ambiguity and uncertainty of it all? Thanks, cynthia
Hi, I received a double liver transplant 3 days apart in Dec 2012 at Queen Elizabeth Hospital Birmingham. the first transplant rejected after 36 hours and I was very fortunate to receive another liver 36 hours after that. I was 60 when transplanted, 67 now and fit as a fiddle by doing all the sensible things patients with a liver condition should do.
Please feel free to ask more questions on this forum, or I run the helpline for the Liver charity Liver4Life, so you can also call me free on 0800 0743494.
Hi- thanks for your kind reply. If you dont mind my asking, how long did you have to wait for transplant? Glad to hear you are doing so well. Many thanks.
18 hours, after the last day of my liver transplant assessment review on Wednesday 5 December 2012, I was told I'd receive a call on Friday afternoon to inform me whether or not I had made it onto the waiting list. That yes call came at 4pm. At 10 the following morning they telephoned, be here in 2 hours. No time for anxiety or nerves, just the 55 mile drive to the hospital, into prep, then the operating room. I consider myself to be the one of the most fortunate patients ever, which is why I now try to give something back by running the Liver4Life helpline. May your husbands recovery be as fortunate as mine. Best Wishes to you both.
Inspiration is what you are.
Very inspiring to read. Jaycee
Thank you for your kind info. Im glad you had such a successful outcome. The waiting is the hardest part. May I be in contact with you further along the process? Thanks for your time.
Sorry Lipstick, I missed your last response. Yes of course, you can contact me either on here or by calling the Liver4Life helpline (number above) 7 days a week.
Hi- when would you be available on the helpline? Many thanks.
You can ring me at any reasonable hour 7 days a week.
Thanks. However, Im in usa so the timing would be difficult. My question is did you have any trouble with cholangitis or fluid building up in lungs before second transplant? Did you stay in phys rehab after the operation? Thanks for your kindness.
My first transplant failed after 36 hours. So I went straight onto the life support ward. The surgeons had 72 hours to find me a new liver before turning off the life support machine (the human body cannot function without a working liver for more than 72 hours). Fortunately they found a match and I was re-transplanted 36 hours later, 3 days after the first transplant.
Apart from an obstinate infection along the scar line that leaked gunge for 10 months before finally healing, and the increased recovery time it took because of the 2 major surgeries in such a short space of time, my recovery has been quick and relatively painless.
I was age 60 when transplanted, I'm 67 now, and feel on top of the world every morning when I wake up beside my beautiful wife of 40 years who has been right by my side all the way through this health journey, and sits beside me now as I type this reply from our rented apartment in Spain, where we regularly come for 3 months to escape the worst of the English winter.
All patients are different, and not all outcomes are the same, but I hope you get some encouragement from reading about my experience. I will add that I am a health nut, I've always eaten sensibly and played soccer until I was 41 then ran, walked, cycled, played badminton and tennis with my wife until my liver problem 'kicked in' at age 57. My surgeons have subsequently told me that my underlying good health played a part in their decision to consider me for the second transplant.
So while your husband is waiting, there is a lot he can be doing himself to improve his own condition and be better ready for transplant when the time comes, plus he will be greatly assisting his medical team, so may I offer you some advice from my own experience;
1. Cut out alcohol completely (assume you've already done this if applicable).
2. Cut down heavily or preferably cut out red meat completely.
3. Cut down on dairy, fatty foods, fried food, processed food, fast food, takeaway food, ready meals, and microwave meals.
4. Significantly increase the amount of home cooked food from raw ingredients, in this way you avoid all the 'crap' manufacturers put in the foods in the above list to 'add' texture, flavour, shelf life and colour etc. All very bad for you, and very hard for a healthy liver to process, let alone a damaged liver.
5. Significantly increase intake of fresh fruit and vegetables, grains, pulses, legumes etc.
6. Buy a juicer and start with one juice a day which will pack the body full of more nutrients, minerals, phyto-nutrients and anti-oxidants than you could absorb by eating them. This has the added benefit of giving the digestive a rest as the food is basically pre-digested when it hits the stomach and gets absorbed far more quickly into the blood stream.
7. Go onto YouTube and watch a documentary called 'The great lymphatic system' by the American bio-chemist Dr Robert Morse. This will hopefully explain to you the importance of all the above, plus the reasoning behind it. I followed all his advice and have made a full recovery, not only from my liver cancer and double transplant, but also subsequently from skin cancer, double brain surgery after a brain haemorrhage caused by a serious fall, and most recently prostate cancer. None of my surgeons in hepatology, neurology, dermatology or urology can believe how quickly I've recovered from all these operations, and I maintain it's because I follow all my own advice in the above list, and keep as active as I can to spend all the energy I create by following the above simple steps.
The very best of luck to you and your husband, and my phone line is open if you ever need it. For UK patients it's a free to call number, I'm not sure about the USA though.
Hello L4Kevin, thank you so much for your kind response and recs. We are indeed following the food guidelines and NEVER eat take out or processed foods and never etoh. I cook a sensible diet from scratch and always have.
My question is - have you ever heard of liver patients scratching a lot when the bile ducts are not working properly? Spoken to hepatologist but no response why. I suspect its the gradual decline of liver? He also gets painful leg cramps at night but all magnesium etc check out fine. Have u ever experienced cramping?
How wonderful that u r in Spain! I am a Spanish speaker and my husband is a native speaker of Spanish and we've travelled there a few times and love the food and sun and culture. Fantastic!
I know she persons exp. is different but it helps me very much to be able to text someone like you who has been through the liver transplant process. I hope you continue to do well and happy Spain!
Hi, itching is normally caused when waste bile products not being removed effectively (the great lymphatic system) and are deposited on the skin causing itching. Following a healthy lifestyle should help reduce symptoms, if not, I'm afraid that has to be within the remit of your medical professionals.
As to cramps, I myself suffered debilitating cramps for years both during the day and night before I even realised I had a liver problem. In my experience, the only thing you can do beyond what you already appear to be doing is keep well hydrated. I rarely ever drank water in my life before, now I try to drink at least 2 litres a day. I still suffer occasional mild cramps, but nothing like I used to, and the itching goes when the liver is healed.
Your liver can heal, my problem was mine got infected with the hep c virus. The only way I could have got it was during a 2 year sojourn to India in the mid 70's where I donated blood to three hospitals and had some dentistry done. I didn't know I had hep c until 35 years later when I collapsed in Bali in Feb 2010 while travelling overland through Southeast Asia, having been canoeing down the Mekong river 6 weeks earlier, apparently quite fit and healthy.
I was transplanted 2 years later, but still with the virus, which obviously re-infected my new liver, and it was a further 18 months before I was strong enough to take a new direct acting antiviral drug to finally cure me after 2 previously unsuccessful attempts, by which time my new liver was again badly damaged with a Fibroscan score reading of 25 (7 is normal).
Since 2014 I have reduced my Fibroscan score back down to 9, by following all the advice I've offered you. So don't listen to anyone who says fibrosis and/or cirrhosis is irreversible, I am living proof. New tissue is generated all the time and repopulates damaged areas of the liver to effect excellent recovery and repair. There is hope, and certainly light at the end of the tunnel, no matter how long, dark or daunting that tunnel might initially appear.
Thanks for your kind words and info. Sometimes I find that friends who havent been through a liver transplant like my husband - they say inappropriate things - probably because they are afraid and it can make things worse. I appreciate your wisdom. In my husband's case, the graft of his transplant failed and the bile ducts continue to plug up and then he has ERCPs to relieve the problem but he is now under going a pretransplant work up in order to get a new liver because the donor liver isnt functioning and hence the endless scratching. The tunnel we are in is very dark because we dont know how long the wait will be and for now his billirubin is fine. He will have to be much sicker before he gets transplanted.
If you dont mind my asking, how did your wife endure the stress of the transplant? This is a lot to bear and of course we didnt think we would have to go through another transplant but here we go again. Well, many thanks.
Hi Lipstick, profuse apologies for not answering earlier, a laptop problem I've had difficulty fixing because we're away from home, but all (finally) sorted now.
Life throws us many curve balls, but the only way through them …… is THROUGHT THEM.
All you can do is try to focus on the light at the end of the tunnel, and be brave, no matter how dark things seem, we always trusted our medical team at the hospital, so knowing they were doing their best did help. I have a large close family who all rallied round to support Vivien and that definitely did help her, a problem shared etc etc . Focus on the day you'll be sitting on the beach together looking back at all this, and you'll both be that much stronger for the experience.
Hi L4LKelvin- thanks for reaching out to me. Unfortunately, I dont have a large family and most members are working so they werent much help and friends have their own lives and problems etc. Husband is healthy now but will need second transplant - we just dont know when.
Waiting is the hardest part. How long did you wait for liver transplant? The anxiety is great.
Many thanks
As previously posted 2 months ago, I was only on the transplant waiting list for 18 hours, it all happened very quickly for me once I was strong enough to be considered for a transplant. However, that was 34 months after I collapsed. During the interim, I joined the UK's Royal College of General Practitioners (as a layman) and took every exam and refresher course they offered to GP's about the liver and healthy living. I also did some Open University courses through Future Learn on the same 2 subjects in order to understand what was happening in my body and what I could do to help myself. Thankfully I can say it has all worked for me. Wishing your husband and you the very best on your own journey.
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