Struggle after transplant

[Gemmax]

Hi all,My partner had a liver transplant on 25/02/2024. The surgery was a bit more complex from an anurysm but went well. Unfortunately he was taken back into surgery less than 24 hours later due to a leaking artery which was thankfully treated. He was out of ITU two days later. Four days later he experienced two huge seizures due to the hospital not re starting medication he was on for 34 years previously before surgery essentially making his body go 'cold turkey'. He has since been experiencing high temperatures daily and is complaining of a numb/tingly arm. He has also had low potassium since surgery. He is extremely low in mood for the past few days and it is so difficult to watch. He wants to come home but obviously cant right now and feels he is 'broken'. Has anyone experienced anything similar? Im struggling to watch him so low and am terrified something else is going to pop up...

[Beture47]

Hi so sorry to hear about your problems after transplant. The first few months are very challenging after the transplant. I was told it would be running a marathon and it isPersonally I would ask for a meeting with the medical team.

Are you getting support from friends and family, that is very important for you as you well as you are also running the marathon with him.

I wish you all the very best

E

[bagpuss7]

Hi Gemma. As none one has replied, I thought I would pop on. I am not sure I have much that's useful to say except...however big and life changing you think a liver transplant will be, its more so. I returned to surgery too due to bleeding within 48 hours).( I am 20 months post now) I also returned to ICU again twice after surgery, with various issues.There is a degree to which this is unsurprising/ expected. This doesn't stop it being traumatising and I don't use that word lightly. Then there are all the drugs and the cases for many of survivors guilt.( mixed feelings about having a deceased person's liver) I cried a lot and the drugs didn't help with that. Steroids alone make you edgy and blue. It is a huge life event. However, fast forward a few months and I went back to work on a phased return initially. Soon I was full time in returning to my job as a teacher. Your husband is in the best and safest place for now. He will be very low at times and have a lot to process. I had a lot of ITU delirium and had to unpack that. I just want to say really, it's very very early days but there is hope for normality again.

[Yellowsydney]

Hi, so sorry he's having so many issues but he is in the right place. The drugs he's on cause a lot of problems, the painkillers, oxycontin caused me to have nightmares and hallucinations. The anti rejection drugs are extremely toxic and can cause problems. Just be there for him, support him. Don't expect miracles overnight but he will get better.it generally takes a year to recover from transplant surgery, it's a slow process to recovery.

If you use Facebook please feel free to join our friendly and knowledgeable Facebook page called 'liver transplant support uk ' thousands of people that have been in your situation..

Hope things improve soon

Hilary xxx

[Livertrans]

Hi Gemma, I would add to what has been said here by saying that when it goes wrong it is like a war of attrition and is very gruelling. I had a tough time after my transplant as my body kept rejecting my liver and have had various setbacks since, the latest being my G.P. giving me antibiotics which affected my anti -rejection drugs causing kidney and liver problems. It's 38 months since my transplant and last week my liver results were the best since my transplant and kidneys normal. It can be a long haul and challenging but try and keep positive no matter what. As has been said , he's in the right place. I think and hope it'll work out fine . it's worth it in the end.

All the very best from me and my partner.

[DandyBod in reply to Livertrans]

Currently 3 months post transplant and have no faith in my local GP so wondering if you would mind sharing what anti rejection medication you take and what antibiotics caused the issue

[Livertrans in reply to DandyBod]

Hi Dandybod, The antibiotics I took were a five day course of clarithromycin . I mentioned it to my consultant the following week and on receipt of the blood tests showing both liver and kidneys a bit compromised he reduced my Adoport and has since reduced it again and my results are the nearest to normal since my transplant. I also take Myfenax but it is the Adoport that is affected. The chemist advised my partner against the antibiotics but as our GP had conferred with another we thought it safe enough. Always best to check with your co-ordinator and listen to your chemist I think.

Good luck in the future DB and remember the co-ordinators are only a phone call away and have been nothing short of excellent in my case. It can be quite wearing but try to find a positive in every day if you can. It works for me anyway.

I should mention it is probably a bit tough for our GP's with this kind of thing. Mine get very nervous about it but we usually get there.

I don't post much but if there is anything else you would like to ask I'm happy to oblige.

All the best.

[DandyBod in reply to Livertrans]

Appreciate it, I totally agree it's not the norm for a GP it's just a little unnerving when you need something and it's not your specialist team. Luckily my results post transplant are brilliant liver wise so hopefully be off the Prednisolone next week leaving me on the adoport and mmf. 3 months post transplant. Thanks again for your reply.

[Gordon99]

Hi Gemmax,

Not long has passed since the transplant of a major organ. It takes time for the body to adjust. In my case it took 3 months before I got out of hospital. My body rejected steroids and it took several attempts with different anti rejection drugs for me to settle down. When I did get out I was determined to wean myself off any drugs which I thought were unnecessary long term. Such as anti psychotics and sedatives. I took advice from doctors and gradually reduced these until all I was taking were the anti rejection meds. These impacted my kidneys ability to process potassium and I was hospitalised and put on a drip to lower my blood potassium. Since then I keep my potassium at a safe level by avoiding high potassium foods. It took me a further 9 months to get my strength and stamina back - I had been inactive for several years prior to transplant. I’m now 6 years post transplant. Keep on keeping on, it can be a long struggle but never give up.

[BritishLiverTrust8 Moderator British Liver Trust]

Dear Gemmax

If you [are in the UK and] would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays)

Best wishes

British Liver Trust

[lonmallin50]

Hi l had transplant in oct 23 sorry to here about your husband the only thing l can comment on is the numb tingling arm l had the same and still have most days they said it was the suppressant drugs for the liver thanks Lon