Did you have post-transplant complications? Your survival story needed. 3 operations in 3 weeks. Will to live slipping.

My best-friend had a liver transplant 3 1/2 weeks ago. Things have not been going smoothly. He's had two operations since then (three in total), plus excruciating pain and terrifying hallucinations.

When he found out he needed a third operation he started feeling suicidal -- not constantly, but on and off. He's *very* excited about his life after the hospital and is full of plans for the future. Plans for things he wants to do to enjoy life and also things to help others and make the world a better place. But at times the present just felt too unbearable to endure.

He got the third operation a few days ago, and for a couple days it seemed this had solved the problem. Other than weakness, he said he was feeling better than he had in years. But then the intense pain came back and the hospital staff are now doing tests to try to figure out what's wrong.

I don't know how he's doing psychologically now, but I'm worried he will feel suicidal again. I don't think he will try to kill himself. But I'm worried about him losing the will to live, because how strong your will to live is can make a big difference in whether or not someone survives something like this.

If you went through something similar, or know someone who did, it would be great to hear your story. It could give him that extra boost that he needs to hang in there.

I will send him the link so he can read it, or his girlfriend can read it to him.

He's a truly good person, and I know if he lives the world will be a better place because of him. Please help.

I will send him the link so he can read your stories. Thank you so much.


3 Replies

  • Hello there, I have PKD withe a huge liver. September 2014 i had a dual transplant, a liver and kidney. My old kidneys are not massive, twice the size of normal, so they were left in place. But liver weighed about 18 lbs. Things did not go well from day one. I was 5 days in ICU i had the most terrible hallucinations and horrible thoughts. I could not escape from them, nor could i wake up. I tried but i couldnt. My painkilling drugs were changed from Morphine to Fentanol Brilliant. Hallucinations gone! I started to come round..

    .After surgery rejection set in to both new organs. This happens i believe in about 20% of cases. I was blitzed with intravenous steroids this stopped the rejection. One thing after another happened to me. Constipation so bad i nearly had to have surgery to clear it. This happened twice. The pain is unbearable, I have had two children and it was much worse than that. Then i had large pockets of fluid that tried to seal them selves in. Pressing on my bladder compromising the new kidney. So i had to have various drains put,they got blocked, so i had more drains. I was constantly being sick, so had to go on more drips. All in all i counted i had over 68 canulas put in, not to mention bloods taken every day I have only touched the surface. Ive had 4 liver biopsys and 3 kidney biopsys. I was in hospital constantly on painkillers which have side effects, Two blood transfusions. Everyday for weeks i had a trip to x-ray ultrasound, drinking barium meals, checking my vascular system. I never felt really well My body started to swell as fluid gathered i could not longer walk, my skin wept fluid. It just went on and on too much to mention here. This went down slowly over a couple of weeks

    By January i was home but still had issues. Then i started itching, so terribly i could have ripped my skin off. It was discovered i had what looked like an abscess in my new liver which would mean another emergency transplant, but subsequently discovered where they join the bile ducts, it had got scar tissue and was blocked, so bile was flooding into my body, it is very salty stuff and we secrete an amazing amount every day . So bile was forcing its way through my liver. It made a hole in it. So yet another drain coming out of my liver for a month While i had 3 endoscopy's to see if a stent could be put in to open it up. But it was too blocked. This is a most uncomfortable procedure.

    I went back to the transplant hospital where i had yet another op to reconstruct my bile duct. A 4 1/2 hour op. After the op you are not allowed food for 10 days, just sucking on a little iced sponge. I Started to feel good for the first time in years of having little kidney function and waddling around with a huge liver compromising all my systems. What i didnt know was that my whole stomach flora was now gone and within a week i was in such pain whenever i ate. I spent weeks in bed loosing more and more weight. I could not keep any food down. I had to go back to baby type food in tiny amounts.I decided to stop taking the pain medications because they were causing constipation and are addictive. Gradually gradually i started to feel better. My sister came which helped lift my spirits. She organised a wheelchair and took me out, but it was so painful going over bumps in the road.

    With out the support of my husband who fought every bit of the way to make sure i got the right treatment and pain meds when needed. He stayed with me, used all his compassionate leave , holidays and more. Swapped shifts with people at work so he could be with me everyday. For hours he sat while i slept.. Your friend will need your support and encouragement all the way. Its taken more than 18 months to recover......and now i feel GREAT! I am back at the gym, rowing, walking the dogs and part time work. Loving life and being with my friends and family, and so grateful to my donor family. Long may it last!

    I would go through it all again. Your friend must hold on. I will give any encouragement i can.

    Please take care.

  • Wow, Damson! Thank you so much for replying. This is such a horrendous ordeal you went through. It is very inspiring, though, to anyone who is going through something similar. That's why I'm so grateful you wrote it. I hope you can share it with others who are in need to hear it. I am very happy to report that my friend is at home and doing well! Of course there is quite a bit of uncertainty in the first year or two, and recovery is slow, but he is soooo much better than he was when I wrote this. It's still rough, though, so I know he will benefit from reading your story. I'm sooooo glad you are doing well now! What a relief, after all that, to be well again. Long may it last!

  • Such good news that your friend feels better. Just having one or two people looking out for you when you are so weak and vulnerable is worth everything.