Did you have post-transplant complicat... - British Liver Trust

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

i-love-my-friend profile image

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.

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16 Replies
i-love-my-friend profile image
i-love-my-friend

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

Dorset123 profile image
Dorset123

Hi, I also had my transplant 3 1/2 weeks ago, & have been through three operations in that time. I guess the experience is different for everyone but I have had my share of scary dreams/ hallucinations to last me a lifetime.

I have never felt suicidal about it but certainly not sure if I would make it. I am still in hospital but seemed to turn a corner a few days ago & I now feel human again & looking forward to getting home.

Don't let him give up!!! Remember his plans for the future! The light does start shining through

in reply to Dorset123

Hello mate, glad you're getting a bit better. Ian & Poz send their best wishes. I had hallucinations as well after the op and took it that was all down to medication. More weird but not scary. About time you came home, there's a shortage of beds in hospitals! All the best, Buck.

i-love-my-friend profile image
i-love-my-friend in reply to Dorset123

Wow, the similarity is uncanny! I'm so glad you're doing better now. May you continue to prosper.

I wrote a reply for the group, but in case you don't see it, thank you for sharing your experience. It really touches my heart that you took the time to help someone I love.

Best wishes!

LAJ123 profile image
LAJ123

Good morning,

I suppose my transplant and recovery simply does not compare and from what you have said I feel extremely fortunate to have had a relatively trouble free surgery and recovery. I did have the terrifying hallucinations, felt like I was in a different universe with animals living in the walls and when I closed my eyes I could still see. But that was only in the intensive care unit for two days and then they stopped the morphine which was the cause.

My worst problem was massive oedema ( fluid in the extremities ) that prevented me getting out of bed and walking. On day seven there was a rejection scare which was quickly resolved after a jugular biopsy and medication and finally my kidney were not working very well and there was talk of dialysis. Happily that also resolved.

In the bed opposite there was a man who had two transplants in four days - and he went home before I did !

What I'm saying is that later when he is hopefully fully recovered, he will look back upon this time and think to himself. "it was a difficult and dark time but far better than before the transplant"

My experience was that as soon as I got over the immediate problems my recovery just took off and I could literally feel the strength and energy returning as my new liver began to work properly.

I'm sure that his recovery will eventually be the same just a bit delayed.

You will find other stories on here which are the very best outcome but also some that were not so good. But we are here in this forum because we support each other and use our individual experiences and stories to give encouragement to those finding it difficult and just need a bit of reassurance.

So keep there for him and give him the support he needs but make sure you get rest and support for yourself as well.

Take care ,

Jim

i-love-my-friend profile image
i-love-my-friend in reply to LAJ123

I'm so glad you're doing well now! :) And thanks for the advice to get rest/support for myself

I wrote a reply for the group, but in case you don't see it, thank you for sharing your experience. It really touches my heart that you took the time to help someone I love.

Best wishes!

sheri44 profile image
sheri44

hello. I'm 6months post transplant. Not had to have any surgeries on top but had many problems. Hallucinations are common heard so much about this. I was already on high doses of morphine so it didn't get me but i did have major panic attacks especially in ICU. Was in a week as my kidneys stopped working. I couldn't taste anything and had a smell up my nose that drove me mad. Weeks later it was still there. I ate nothing had no appetite at all. Ended up being fed by tube which did nothing. Since my transplant had biopsies as i lost 11kg in 2weeks had horrific stomach pains n lived on the toilet. Found out i had the CMV virus then next biopsies showed coeliac disease.

I'm on 2weekly visits meds are being swapped around appetites still poor struggling with hot flushes couldn't sleep after my transplant due to steroids then my skin was peeling off my hands more steroids. I had rage which just exploded at times for nothing and had terrible emotional outbursts still do but less than i did. I have very dark moments where i feel so down depressed and isolated. Antidepressants were trying to be given to me but i don't want them. The people on here have been a huge support to me. I really hope your friend gets through this. There's light at the end of the tunnel i know that now. I have a ct scan on Thursday to see if anything else is going on. At times its tough but I'm grateful to be here. That's all i focus on now. I was so sick before and wouldn't have been here if it wasn't for my donor. I know ill get my life and health back. However long it takes. Wishing him lots of luck 🍀

i-love-my-friend profile image
i-love-my-friend in reply to sheri44

Wow, what an ordeal. I'm glad you are managing to cultivate a more positive attitude now. That's really impressive. I hope you continue to improve physically and psychologically.

I wrote a reply for the group, but in case you don't see it, thank you for sharing your experience. It really touches my heart that you took the time to help someone I love.

Best wishes!

AyrshireK profile image
AyrshireK

The transplant unit should have a psychologist on the team - he/she was probably involved during your friends transplant assessment (we certainly saw one at Edinburgh before hubby was listed). They are on call if your friend needs that kind of help to deal with some of the issues you mentioned so that might be an avenue to explore for assistance.

Transplant is a massive undertaking, it's massive surgery for a start and sometimes the 'plumbing' doesn't all knit together first time round so requires these little tweaks and sometimes additional surgeries. The steroids are known to cause depression symptoms and alter mood massively and top that off with massive doses of pain killing meds like morphine it is bound to mess with the head together with 'survivor guilt' type worries.

It is early days for your friend yet, the new liver isn't yet fully bedded in and hopefully as the days and weeks go by things will look a lot more rosy and he can start living those post-transplant dreams he has.

I think some of us go into the T/P discussion and listing expecting it to be all smooth sailing and an immediate 'Happy Every After' but some folks don't get that or the journey is a little bumpier than envisaged but the majority do go on to live a better life than they would have had without the op or prior to the op.

Fingers crossed your friend can start living his happy ever after very soon.

Katie xx

i-love-my-friend profile image
i-love-my-friend in reply to AyrshireK

Thanks for all the advice and mentioning the psychological team.

I hope you're doing well and continue to!

I wrote a reply for the group, but in case you don't see it, thank you for sharing your experience. It really touches my heart that you took the time to help someone I love.

Best wishes!

i-love-my-friend profile image
i-love-my-friend

Hi everyone! Thank you to each and every one of you for sharing your experience. It really touches my heart that you all took the time to help someone I love.

I will share your encouraging messages with him by email.

I'm also going to tell him about this forum. When he feels well enough to type, this could be a place of great support for him.

As Jim said:

" we are here in this forum because we support each other and use our individual experiences and stories to give encouragement to those finding it difficult and just need a bit of reassurance."

This is a beautiful community you have here. I'm glad to see people supporting each other through these difficult experiences.

sheri44 profile image
sheri44 in reply to i-love-my-friend

please do head him this way when he feels better. He will get so much support here. It's a fantastic place to be and its 24/7 always someone around.

i-love-my-friend profile image
i-love-my-friend

I'm so glad you're doing well now! :) So true, there is a light at the end of the tunnel, and the replies you and others have written will remind him of that!

I wrote a reply for the group, but in case you don't see it, thank you for sharing your experience. It really touches my heart that you took the time to help someone I love.

Best wishes!

pear-shaped profile image
pear-shaped

Hello,

My husband had many ordeals before, during and after transplant....

We are now getting ready for a hernia repair operation...

Do read the posts as it might give some support...

Pear

i-love-my-friend profile image
i-love-my-friend in reply to pear-shaped

Hi Pear. Thank you for sharing and I will browse the posts. I'm truly sorry for the suffering your husband has endured. Best wishes for his health.

i-love-my-friend profile image
i-love-my-friend

Update: My friend is alive and doing well! He's back home and his recovery is going well, with his health steadily improving! He's happy and oh so grateful to be alive.

He told me that he found it helpful to hear your stories. So thank you!

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