I've written a few posts on here and read all the new posts every day. I often want to reply but struggle with the words.
I've decided to just write about how I feel. It might be a little long and possibly a little deep but I'm gonna try and get all of my feelings out in this one post.
It was 2 years ago today that I was on holiday in Bulgaria. I came back and within a week had jaundice and went for blood tests and then A+E. I fell unconscious in hospital and the next thing I knew, I woke up 6 weeks later with a new liver at the Royal Free Hospital. I was told I had chronic hepatitis B and my immune system was unable to fight the virus and my liver failed. To this day I am unaware of how long I had the virus for. I'm guessing it could have been a while but I'll never know.
I read so many posts on here where people have had a transplant after years of being on a waiting list, so they have felt rough for many years and have pretty much immediately felt better after the transplant. For me it was different. Looking back at when I was in Bulgaria, I probably wasn't my usual self but basically I was pretty fit until I had the transplant. There was no liver for me when my own liver failed and I was basically written off but then at the last minute a liver became available and the transplant was performed. I know I am so lucky to be alive and will be forever grateful to the staff at the hospital and all involved.
On March 23rd this year I had a very large incisional hernia repair. Unfortunately I bled from the operation and I had to be operated on again within 48 hours which was basically another life saving operation. I have mesh on my entire right hand side of my stomach.
I often beat myself up about how long it is taking me to recover. I struggle to get used to the side effects of the immune suppressant medication (Ciclosporin). It make me feel low, I have tinnitus, brain fog and a general lethargy every day. I've always been a worker and am desperate to get back to work. I get so bored indoors every day and it really doesn't help my state of mind. Every day it feels like I will never be fit enough to work again. My stomach is still extremely tender from the hernia operation.
I also read a lot on here how some people seem to be riddled with guilt regarding their donor. I was informed by my consultant that my donors family wanted to remain annonymous, and I was fine with that. I don't know if it's right to be ok with not knowing any details about my donor or their family. I seem to be fine with it. Maybe I'm scared of finding out anything or maybe I will want to find out something as time goes on.
Overall, I do have a very good outlook on life and have remained positive throughout the past 2 years, and very upbeat too. I guess I just have days when I question it all and today is one of them. I'm also aware that I have been given the precious gift of life and I don't really know how I should react or feel about that. It's not something that many people have to deal with or think about apart from transplant patients.
Maybe when I am finally back to work and have come full circle I will be able to reflect on all of it, maybe with some closure.
I just wish that I didn't feel so spaced out on the medication most of the time.
I have days when I feel I could almost conquer the world and the next day I feel pretty rough and can hardly do a thing. Everyone sees me and thinks I'm doing amazingly well because I'm aware that I'm the same happy and chirpy personality that I was before. I don't really like telling many people how difficult it all is on a day to day basis.
Anyway, I'm so sorry this is so long. I've been trying for ages to put the way that I feel into one post. I'm not sure if I've achieved that. I'm sure I've missed out so much!
Andy.
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AndyEssex
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As long as you know your not alone andy 😊 that's what helps me x
The hardest for me was accepting I would never work again not just because I don't have the same energy but because I know I would fuck it up my memory and head isn't the same..
Thank you. The medication has definitely messed my memory up a fair bit too, and I worry about that affecting me for work. Maybe I will just have to write more things down! My long term memory seems relatively untouched but my short term is a nightmare.
Same here and I really do write things down and I lose that 😂😂
Not sure if you have seen anyone but I went to see a psychologist about a year ago (through my gp) and it helped me immensely, it helped with coming to terms with how I have to adapt with my new way of life just a thought for you 😘
Andy, your post is moving and authentic. I am so glad you found the energy to write and your words are quite perfect. Not too long at all.I feel certain you will help a lot of people on this forum with your honest description of what things really feel like. People feel less isolated when they know they are not alone. Thank you so much for taking the time to post. All good wishes to you moving forward.
Thank you very much. I've wanted to write a post like this for a while now. I read all the new posts every day but I often feel that they miss the core issues with me, but of course everyone has something different going on. I just hoped that some people could relate to the everyday struggles that we go through, even so long after the initial transplant.
Hi Andy. Glad you were able to post and say all that you wanted and needed to say. For a lot of us it's not all roses after transplant. The people that recover quickly from the operation and are back living a normal life in no time are certainly not in the majority. We all heal at different paces and have our individual problems and it's not always plain sailing. Most of us that have been transplanted spent a lot of time feeling ill leading up to transplant and all this takes it's toll on our body's and our healing. It's a huge operation to recover from and for some of us it takes longer than the average. In your case although you didn't realise it at the time you were obviously very ill leading up to your transplant and this, then the transplant and then your further operations have taken their toll on your body, then there are the immunosuppressants etc. to adjust to. I am 10 months post transplant and I have joint and bone problems now that I didn't have before transplant and I am nothing like the strong man that I was 6 years ago. I get tired easily, I'm on strong pain killers now which make things easier for me for getting about and doing things but unfortunately add to the tiredness. My new liver is working excellently and all tests are great. It's just my body holding me back. I've come to terms with the fact that I will never be the person that I was a few years back but I'm grateful to be here and will make the most of it. I am retired and older than you so you will stand a better chance of getting back to how you were before any of this happened.Just remember when you are having a good day, although it may be followed by a bad one, eventually there will be more and more of those good days, you are just taking longer to recover. Like you, I have always been a worker and I feel your frustration. It frustrates me to see my wife doing all the tough jobs that I should be doing We all have our down moments and we show our happy face to the rest of the world. You can always come and sound off on the forum, we all understand and will be here for you. Hang on in there Andrew, things will improve over time, physically and emotionally. Keep on posting. All the very best to you Alf.
Hi AD. Thank you. When I look back to a year ago, although I now have my problems, this is a far better place to be and I am enjoying time that I didn't expect have
Well what can I say but your note/story to Andy is lovely !
Andy! I wish you all the very best and please keep in touch with us ! We do have our silly moments but our hearts are in the right place and were here for you through those bad and good days!
Have a great break,Trish. I can see Andy took a lot of time and thought on his post. I think he wants to discuss his feelings and get the thoughts of others?
in reply to
Pete
If your reading this note thank you for lovely donation !
I always said to myself that if I could get back to 80% of the person I used to be, I would be fine with that. I've chased that percentage for a long time, of course not knowing what 80% of my "old self" would even feel like. I don't chase that percentage anymore!
I used to be a taxi driver and because I had seizures while on life support I am banned from driving a taxi for 5 years. I definitely would have gone back to doing that if I didn't have the seizures or hernia, but such is life, and as they say.."it is what it is". I never feel hard done by about any of it. I'm just hoping one day that I can heal a little more and get back to work. It would be a huge achievement if I can do that.
Fabulous post Alf, words to give comfort. As always you are, as many others on this site always ready with a kind and comforting word. I for one appreciate you and all the others. Jaycee
Alf, thanks for a truly thought provoking post. I always thought "why couldn't it be me as well" when I read of lucky people having the gift of life, but your post has given me another perspective on the transplant journey. Sure I have most of the side effects of cirrhosis now, but didn't realise that it's not all sweetness and light on the other side. I honestly thought that the after effects were temporary, and a healthy life beckoned on the other side. Only transplantees can weigh up the pro's and cons pre and post transplant, not to mention the emotional aspects.
David
Hi Andy
Wow that as a very emotive post which probably expresses the feelings of quite a few of us Post TP. Much more eloquently put than I could though!
Like alf says do try and make the most of the good days.
And like everyone else has said I wish you the best of luck and do hope you start to feel both mentally and physically better in the days to come.
I guess today was one of those bad days for me, but also a day where I could really put pen to paper as such, and express my frustrations.
I talk a lot with my liver consultant about "quality of life". I tell him that as much as I will be eternally grateful for all of their work, it's all pretty redundant being a liver transplant patient with no life for years afterwards. I'm forever chasing a sense of being that I'm comfortable with. Some days I feel like I'm quite close. Then I'll have a series of days where I feel so far away from being remotely "normal". I've always been a very energetic person who came from a bodybuilding and fitness background, so even though I feel the fatigue brought on by the medication I can deal with that. It's just that spaced out brain-fog feeling that makes me question myself. It comes and goes.
Sometimes my wife tells me I’m losing it - mentally wise - i.e. as in some daft nonsensical things I might say. I am nearly 11 months post. She still has this fear of me reverting to pre TP.☹️. I reckon these occasions are getting more and more spaced out - time wise that is 😑 - these days. For you this is obviously not happening as quickly as it maybe should?
I wasn’t as fit as you before the transplant having had 4 years of body going downhill pre TP. So I can indeed imagine the horrible feeling you must have physically wise from going in a step change from fit as a fiddle to feeling like a damp tea towel.
I do hope you improve soon.
Miles
Hi Andy, I am recently transplanted and I have friends on this site who were transplanted at roughly the same time, some have had really great recoveries, others not so great. My own has had its ups and downs. On the whole, I still feel so incredibly
lucky.
I loved the honesty in your post. Because, it is not always easy, and it can make you think why is this worse now, than how I felt before?
It is hard some days.
We live in hope for a healthy future. That our strength returns. We are all different.
I take this moment to send virtual hugs to you.
Stay strong, we will get there.
I have believed all the way on this journey, that we are all in the same boat. We have liver disease, it matters not how we got into the boat, it is the same boat. However, the return trip, is not always a speedboat.. I think some are in rowing boats.
Thinking of you. Jaycee
in reply to
Fantastic Jaycee. Not as in fantastic about the situation but fantastic as in how you express the after effects of a TP a lot of us have encountered!
I particularly like the bit about it not mattering how/why we had to have a transplant. There is still a definite perception from certain people you meet for the first time and tell them you have had a liver transplant. You can see it in their faces - silly sod, it’s your own fault for drinking too much. And yet one of the many things I have l learned from being on this forum is that ALD is just one of several/many ways the liver can be damaged beyond repair ☹️.
As you say SEGA SEGA - slowly slowly 👍, let us all get better 🙏.
Many thanks Andy for your very honest post. I hope and pray you have a quick and good recovery, with no complications. I can only imagine the emotions you are going through, but, rest assured, there are lots of great people on here that will help you every step of the way.
So sorry to hear of your plight and thank you for sharing your thoughts and fears so openly. It is so hard when you go from being fit, active and healthy to being laid low. (I’m still waiting for a diagnosis for my jaundice) I wonder if you have sought or are receiving any counselling? I know that can help you to explore the range of emotions you are experiencing.
It's still early days and with the two major operations your having to adjust to a totally different life style - living life in the slow lane as to speak. I have different health issue to what your dealing with but know only to well of the foggy unfunctional head and memory problems. The lethargy is also difficult to cope with and when plucked out of a working environment the days can be very long. I had a couple of goods days only the week before last - something that hadn't happened for a very long time.
Not wanting to waste a second of this sudden energy I did the garden, even pruned my tree, changed the bedding, washed the duvet ect. Oh boy oh boy did I suffer for doing so I was laid up in bed for a good few days recovering. Life can be cruel but take each day as it comes - dont try and rush things. It's hard to accept what has taken place and not only has your body been through a trauma your mental state has too. As for the new liver - just bless that person in your prayer's.
Chin up mate I feel you expressed your feelings and emotions very well.
Thank you for sharing Andy. We do hope you find our forum a supportive place to visit.
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