Post Transplant Emotions

[Dodger1953]

MyStory so Far from Dodger1953

I don’t know if there is a limit to the length of our posts but here goes so please bear with me, I had a successful Liver Transplant on January 1st 2014, and I feel I had to put into words some of the emotions that I have had to face since. My story began in the summer of 2007, I had just started a new job when I was taken ill and hospitalised in the August of that year, the doctors at the time thought it was a viral infection but after several weeks in hospital they could find no explanation for the infection, but the one thing they did find as a result of all the tests was that I was suffering from NASH of the liver (NONALCOHOLIC STEATOHEPATITIS) I was discharged and for the next 6 years I underwent yearly checks on my liver for signs of deterioration and up to 2013 there appeared to be none. Then at the end of June 2013 I was again taken ill and hospitalised, once again they treated me for a viral infection and once again they could find no cause but two young Doctors who I had never seen before asked me if I had been seen my a Liver specialist which I hadn’t, so after approx 5 weeks I was given an appointment to see a Doctor from the Freeman Hospital at Newcastle, a hospital I am ashamed to say I had never heard of before then, On the day of my appointment at the James Cook University Hospital, my wife and I had a page of questions we needed answering, but before we could ask them the Doctor answered them all from my medical records and the final one was did I need a liver transplant and the answer was yes I did, it was the only way forward for me. My liver was badly scarred and I also had HCC of my Liver. This was now the end of August 2013 and The Doctor said he would put my case forward to the Transplant Team at the Freeman at their next meeting and he would inform me of their decision, Thankfully the team agreed with him and I had to go into the Freeman for my 3 day assessment, which I thankfully passed, and I was subsequently put on the active Transplant list this brought me to the end of October and by now my health had deteriorated quite badly, between October and December I was admitted a further 3 times to James Cook and transferred to the Freeman on all occasions, The Freeman had become like a second home for me and on the 19th Dec 13 I was told that there was a liver for me and I would have the operation later that day, but devastatingly for us it was not to be and the op never happened and the following day I was allowed home for Christmas, On the 27th I again was rushed into James Cook and again transferred to the Freeman, so it looked like I would see the New Year in at the Freeman which is indeed what happened, but at 1 0'clock in the morning of the 1st a nurse came into my room to tell me that a liver was available for me and that I should be prepared for the op later in the day, I called my Wife and my son who came up to the hospital for about 7.30am and then we all just waited, for what seemed an eternity but at 6.00pm I was finally taken down to the theatres for my operation, which as I have already said was a success, Unfortunately my post op recovery was marred somewhat by complications two of which were dizzy spells and blackouts whenever I stood up resulting in numerous falls on the wards the worst of which resulted in a broken hip, and that meant a second operation 2 weeks after my transplant to mend it, so my stay in hospital was lengthened from the expected 2-3 weeks to nearly 10 weeks. They found after an MRI scan that I had lesions on my brain which they thought where the result of a mini stroke I suffered whilst having my transplant operation and these were causing my dizzy spells and blackouts, then after returning home and recuperating I eventually returned to work but my hip started to give me problems and unfortunately in the August of 2014 another major op on my broken hip which was not healing correctly, and that meant another spell off work. It was at this time when I found myself laid up yet again that my psychological problems started, You see from the time of my illness in June and my diagnosis in the August to my transplant in January it was only a matter of 6 months from start to finish and I didn't have time to dwell on things, it just happened, but then I was laid up again in the August of 14 so I began to think about what had happened to me, and why It had happened to me, I met and became friends with other patients on the wards that had been waiting in some cases for years for a transplant, and yet here I was all sorted after 6 months, and then what of the donor, who was it, how had they died, why did they die, it seemed to me however illogical that they had passed over for me and this was something I could not reconcile myself to. I cannot praise the Transplant team the doctors, nurses, ward staff, the Transplant coordinators and social worker on the transplant Ward for their help not only to me but my wife and son, the people at the LIVErNORTH charity for providing the flat that allowed my wife to stay with me for my whole stay in hospital but nothing and nobody prepared me for the feelings I have had to face over the death of the donor who provided my liver. The more I thought about it the deeper my feelings became, The nightmare I had about meeting the donors family and how horrified they were when they found out it was me that had received their loved one’s liver a 61yr old man, not a younger man with a young family with his whole life in front of him, had I cheated a younger person from receiving this life saving donation and what made me so special that I should receive it, I know these feelings are irrational and that donor families are genuinely concerned that any individual whatever their circumstances are should receive life saving donations but I cannot help the way I feel. On the first of January of each year we light a candle for my Donor in a special glass holder that I had inscribed with the following words (In Memory of a life Lost to save others). That one simple act of lighting the candle each year helps me to face the personal demons that my feelings have conjured up, I am now back into my full time job, the firm I work for provided a therapist for me to talk to which helped a lot. So how will this story end ? I genuinely don't know. Thanks to my wife and son who have had to look after me through all of this turmoil I think I am feeling better about myself in respect to how I accept the transplant, and how I feel about the donor and how they passed away and that it didn't happen just for me. I just wish that I could have been forewarned pre-op about the possibility of these feelings, they tell you about all of the dangers of the trasplant-op but nothing about post-op problems, I cannot be the only person to have gone through this and I don't suppose that I will be the last. It's just that you are so ill you just want the pain and constant illness to stop and this does not give you chance to stop and think about other things, like the donor and what their circumstances are. If you decide to print this story and someone who is waiting for a transplant is reading this I don't want you to dwell on what I have said, I will never regret having the operation and if I had been pre-warned would I still have had it, yes obviously! Because I needed it and so will you, but if what has happened to me somehow prepares you for that operation and you are able to somehow prepare yourself mentally for the feelings you might have, then what I have gone through makes sense and is worthwhile. I hope my story has not upset anyone, as this was not my intention, I wrote it to help my own healing process and hopefully to prepare someone else so they do not suffer as I have and if this proves right then I am happy that I have helped. As a footnote to my story at one of my previous blood tests the Doctor was concerned about some suspicious levels and ordered an ultrasound on my liver and the results have shown that I am now suffering from a Fatty Liver again!, so it looks like I have managed to make a mess of my Donors Liver as well, and I don’t know whether my guilt can cope with this. Well I told you it was long, I hope you stayed with me.

Stay Safe Everyone

Dodger1953

[Laura009]

Hi Dodger.

Well haven't you been through it?

Many recipients of a donor organ, in fact I'd stick my neck out and say probably every recipient will go through the emotions you experience.. like a survivors guilt almost l guess. Having read these stories several times on this forum, l have genuinely been moved to tears by the gratitude and humility these people have shown for their donor and their families. To have gone through years of illness, the torment of " today's the day " only to have their dreams dashed maybe several times before finally they endure the huge surgical operation which will hopefully save them and give them a far improved new life. I chuckle at the names some of them give their precious gifts !

So what you are experiencing is perfectly normal. I know some recipients like to write to their donor's family to thank them , light candles or plant trees or roses in their honour which l understand can be a great source of comfort.

Sorry to read your new liver is showing signs of fat now too but hopefully by sticking to a healthy diet as I'm sure you've been advised by your consultant, it will heal itself in time.

So thankyou for sharing your story, thankyou to your donor and family

and another massive thankyou to the skill and care of the NHS surgeons and carers who saved another life 💙

Stay fit, stay well, stay safe.

Laura

[Huggy7614]

Hi Dodger,

As Laura said, most of us suffer, in differing degrees, some form of guilt. I have just had my first anniversary, and found myself ‘celebrating’ the event a day early - the likely day of my donors death. To me this seemed more important than my own celebration.

But, your donor, and their family, wanted to give someone in need the chance to live - let’s face it, had we not been given that chance We would have died. Clearly the medical profession felt you were a suitable candidate. You should have no guilt about that, yet I get it’s inevitable.

It does sound like you’ve had a rough ride, and I feel for you.

Reading your ‘story’ brought back many thoughts and memories to me too, and I may now be tempted to put fingers to keyboard while I still have the memories!!!

I really wish you well for the future and hope YOUR liver doesn’t remain too fatty!!

Good luck, Andy.

[Isabelle2]

Hi

I had my transplant nearly 3 years ago and at times I found it pretty hard. This was mostly at about 6 to 18 months in when I had bad post symptoms. Things like a gammy leg due to nerve damage during op, painful hands due to advagraph reaction etc.

Now these are fewer and my life has settled down. I can’t do everything I did previously, have a hernia which should be sorted etc. The thing which annoys me the most is that I suffered very slight brain damage due to HE at the time of the operation. This means I have some problems finding my words and don’t speak quite as clearly as before. In English it’s ok but worse in French, we live in France and I saw a speech therapist for it.

I think I have just accepted I can’t change these things and have tried to get on with life as best I can. I did also see a therapist about something unrelated but that also help me feel happier.

We must all be a bit conscious about what we put in our bodies so hopefully with a little tweak to your diet you can stop your liver becoming fatty again. I think Laura knows I call mine O’liver and he’s my bestie.

Please don’t EVER doubt you were worth the transplant. They don’t give them out lightly so the Drs knew you were worth it

Isabelle XX

[Hidden]

Good morning Dodger1953,

Thank you for sharing your story. I am sure it will give, hope, inspiration and insight to others.

As you can see already, it may also encourage others to share their stories too.

Take care and stay safe,

Trust9

[Dodger1953 in reply to Hidden]

Many Thanks Trust9, Thats exactly what I hoped for, I have never drank of smoked which made my initial diagnosis in 2007 so strange and then to be told in 2013 that my liver was knackered, it was totally devastating, but we are all in the same boat or we would not be on this forum so if my story encourages others to tell their story and others just to think then I can feel a bit better about myself.

[Lisa6161 in reply to Dodger1953]

Hi dodger, am new on here and am waiting for liver tests, that so far are not good. But my relation to your remarkable story is that, my brother has had 5 kidney transplants. Born with renal failure, he was the first male child in uk, to have haemodialysis, then a transplant. This was in 1967, and he was a 'Guinea pig,' that would have died anyway. Fast forward to 5 years ago, and his now retired surgeon, gave him all his original medical notes. Included was the details of all the doners. In particular, a young girl was a doner, and that kidney gave him the shortest success.

He feels he failed that little girl. All the 5 transplants have failed over the years, and he has been back on dialysis for many years now. He thinks about all the doners, but the child doner has really affected him still now. He was himself a child for most of it, and of course did nothing wrong to abuse it. My parents have tried to reassure him that the gift of donating an organ, is not a decision taken lightly. It helps with the grieving process for them, knowing that some good came from such tragic circumstances. So my point is that, you are not alone with these thoughts. My brother is coping better now, but he won't go for counselling. In defence of his retired surgeon, he stupidly forgot that the doner details were in that file. But he did say he was surprised by my brothers reaction, as he had always been a "tough cookie."

Take care and you have done the right thing in sharing.

Best of luck X

[Dodger1953 in reply to Lisa6161]

Thanks Lisa6161, It just goes to show Lisa being a "tough cookie" can just be a front, I think I know how your brother is feeling, thats why I don't think I could ever face knowing who my donor was, as it is I have no idea, if I did I would have a face, a tragic story, a greiving family I honestly dont think I could face knowing that, its as though its a case of "out of sight out of mind" and I don't mean that in any flippant way, I honestly would be devistated if I ever found out who my donor was especially if it turned out to be a young person. The feelings of guilt can be all consuming and its as if, If I dont know the details I can push it deep in the back of my mind, and yet this person saved my life and I can never forget that, the turmoil can be overwhelming. I hope your brother continues to cope better, and I hope your test's come back better than you think. Take Care, Stay Safe and Keep Smiling, Dodger1953

[Lisa6161 in reply to Dodger1953]

Thanks Dodger. I should have added, that my brothers transplants were late 1960's to 70's. Nowadays there are much better meds to cope with rejection now. The matching of an organ, can be less accurate too because of advances in modern science. My bro got HepB from those times on a dialysis machine. That's how far we have progressed. It wouldn't happen now.

Talking about 5 transplants didn't give hope to you or anyone else, and I should have included this in my reply.

Sorry if it did cause concerns.

Anyway, enjoy the bank holiday weather and focus on the new lease of life you now have.

Take care x