Having a liver transplant

[oohler]

Hello my name is Oscar I am going to have a liver transplant and I am concerned about what I don't know. I am hoping to hear from someone who has had this done. I am more fearful about what to expect. Thanks for letting me post this.7

[Treeclimber62]

Hi I had a transplant 4 months ago and can only speak about my experience.Many people on here know what you are facing ,so try to keep calm and take their stories to help you , I did and it helped me greatly .it is a serious operation but I have come through it and doing good so far it did help that I was pretty fit and had a great wife to support me ,the staff in Birmingham were fantastic and of course my donor I can never thank enough . You will come through this and things will look much better I promise good luck

[Kristian]

Hi Oscar,

I had a liver transplant in April. All I can say is, it one of the best things that has ever happened for me. But, thats not answering your question.

The best bit of advice I can give is to write down any questions you have and discuss them with your consultant or the liver transplant coordinators. They are the best people to advise you and are always really happy to do so. Don't worry, no question is a daft question. They can't cover every eventuality during the assessment, although they do come pretty close.

So what should you expect? Well thats very individual. I'm assuming here you have been listed. For me I was a good blood type for a match. I got the call 6 weeks after being listed. They tell you that they may have a liver for you and they will then go through with you what you need to do, where you need to go and when you should look to set off. Don't worry, you won't have to leave your tea on the dining room table. I had about an hour and a half before i needed to set off and I lived about 2 hours from the hospital. I got the call about 9.30 at night and was taken down for transplant about 8.30 the following morning. So that should give you some idea of the timescales that may be involved, although others may have had a different experience.

I don't remember much about going down for the transplant. The last I remember was them turning up to my room with a gurney for me. The next thing I know I'm in the ICU with someone telling me to cough as they took the breathing tube out. Apparently I came out of theatre just after 7pm and was kept sedated overnight. I think they brought me round sometime late afternoon of the day following the transplant. But, that time is very individual so don't worry about it being longer or shorter, everyone is different. I went to sleep and was oblivious to everything. All lines and drips are put in whilst I was fast asleep so no worries there. You just wake up attached to things with tubes going in and tubes going out.

I was in ICU for about 4 days as my kidneys were a bit relaxed about getting back to work. But other than that everything seemed to go reasonably uneventfully. Was I in pain? Surprisingly, not as much as I thought I would be. Now don't get me wrong things were sore. They will be for a few months at least and I still get the odd twinge now, but for me it wasn't unbearable. Besides, you're given as much pain relief as you need. Having been in the ICU for 4 days I was then only on the ward for another 4 before being told I could go home. So about average it seems.

When you are on ICU they are quite keen to get you up and about as soon as you are able. So don't be surprised if a physio turns up to take you for a walk attached to drip stands and with a catheter and drain still in place. You do though have lots of people to hold you and everything else.

Speaking of catheters, don't worry about it going in, you won't feel a thing coz you'll be fast asleep :-). When its in its not really that uncomfortable, ok it may be a bit inconvenient for moving about but hey you don't have to keep getting up to go to the loo at least. Removing it is straight forward and not that uncomfortable.

When at home do try and ensure you get up and do a bit of exercise each day, even if its just a bit of a walk round the garden. Be careful not to over do it. You will feel tired and will get tired quite quickly. You will get fitter over time, it is a slow process though so dont try and rush it. I was able to return to work just over three months after my transplant. However that was on a phased basis, which for me was essential. I couldn't have gone back full time straight away. I was full time by about mid September, at which time I also managed to walk up a welsh mountain. It was very very hard work and I needed lots of stops, but that was a goal I had set and had a straightforward recovery that enabled me to do it. However, I'm now 6 months post transplant and still can't really run. The muscles and tendons are still very weak and are not that great at holding everything still. That wasn't that unexpected though, that too was explained to me. Can't remember if it was before I left or at a clinic.

I suppose some of the worry people may have relates to the medications and their side affects. Firstly, the meds are easy to manage. You'll be on a lot when you leave, but mine reduced quite quickly. Everything is explained to you and your carer before you leave and everything is written down for you with helpful pictures too. I cant say how the meds will affect you, everyone is different. I had an issue with having shaky hands for a while after the transplant. But that wore off over time and medication doses were changed. It wasn't really that big an issue and was quite funny.

So what advice would I give. Don't worry about things you can't change. A transplant is a great thing, it really is not just life changing but life making. There will be ups and there will be downs. You'll have times when you feel absolutely euphoric and you'll have times when you'll feel no so great. Take each as they come and deal with them as they come. This is one time when you don't need to think about the bigger picture. If a challenge arises, and they will, take them as they come.

Hope that's helpful and hope the mods don't remove it for me being more specific than I should. In my experience, don't waste time worrying about potential outcomes. Just remember, whatever happens, it is far better than the alternative.

[Oscar_1]

Oh ! I wish !! My darling husband had 2 false alarms after being called ( donors proved not suitable ) 3rd time all was looking good ! Hubby prepared for op! Anithiatist visited & surgeon alli good! Donor liver classed as gold standard match . Nightmare scenario..... what could go wrong? We were even told previous day that last mri scans were good minimal growth.

How could our lives possibly suffer the heartache that was to come?

YES! Unbelievable the surgeon decided to review the recent scan ( which we had been told previous day was fine - minimal growth - worst case in transplant list further 3 month ). The surgeon decided hubbys tumours now reached maximum criteria!!

The immense heartache and psychological trauma that has followed is beyond cruel.

We have now sadly been

Discharged from the liver specialist at the freeman hospital Newcastle with no treatment or palliative care.

We r in an incredible sad situation with little or no care support.

What can I say? If you met my husband you would love him!! You would not think for one moment he was given a terminal diagnosis ( with no hope !!!) as we try each day to do our best and enjoy life & our beautiful family xx

Married 44 yrs ours is a classic love story- Hollywood movie in the making - his op was due to feature in a forthcoming documentary on transplants but no doubt won’t now.

Just desperate for a happy ending

xx

[Barnetaccounts in reply to Oscar_1]

I have a sort of similar experience to Oscar_1. I had only one false alarm before I got the call that was to change my life forever. I was told if the liver that was on its way to The Royal Free was as half as good as had been explained it had my name all over it. I was prepped, liver arrived and was as good as had been described, it finally looked like my 18 months on the list was going to be over. I went to theatre and the procedure started where I unfortunately haemorrhaged really badly. The procedure was aborted as they battled to save my life. I eventually got up to ICU where I spent the next 12 days in a coma, which the head of ICU told my wife and my grown up kids that I was extremely unlikely to ever come out of and they should prepare themselves for the inevitable. As I am writing this I obviously came out of the coma and then I was told I would probably never get to leave the hospital and all the previous advice still stood. Well I must be really stubborn, as the palliative care team came around and I told them to f*** off unless they knew something I wasn't aware of. I was discharged 2 weeks after regaining consciousness and am approaching the anniversary of my procedure. I deal with things as they come up, and as much as I still get very tired I live a relatively normal life. I know that my life expectancy will be curtailed, but I will not sit on the pity potty and wait for it to happen. When the time comes it will be my time, but I will not go without a fight. I write a blog about my experience from initial diagnosis to date and this can be found at 1liver1life.wordpress.com

[Melodymermaid888 in reply to Oscar_1]

Omg this broke my heart.

Could you go private.

Oh sending so much prayers for you both xxxx

[Oscar_1 in reply to Melodymermaid888]

I understand you can’t go private for this, unless someone knows differently.

It is hard to accept no treatment possible but the consultant believes any intervention and the liver could cease to work.

We try to remain positive. The same consultant gave a prognosis of 3 months last December (2016)

Thank you for caring xxx

[Melodymermaid888 in reply to Oscar_1]

I wish I could do more 🙏❤️

[Hidden]

Hi Oscar

I had my transplant just under 10 months ago. I was so ill in the months leading up to the procedure that I didn't think about any ifs or buts, just wanted to have it done.

Luckily didn't wait long at all. Had the procedure within 5 weeks of being put on the list. I'm that time I had 4 calls altogether. No complications thankfully. I'm just hoping I'll be eligible to come off Advagraf eventually as it can cause a host of issues like kidney damage, increased risk of cancer, fatigue, sleep trouble, etc but it's the only thing preventing rejection.

Was out and about within 7 days of having the surgery and driving after 6 weeks.

Now apart from some fatigue and sleep problems, I feel great. Do I feel the best I ever have? Of course not and I don't think I ever will but I'm alive and able to live a relatively normal life. Just about to go for a run now, need to get my fitness back on track.

Just think whatever happens, you'll likely be in good hands and hopefully be able to live a long and happy life.

Good luck!