Hi every one! I hope you all are doing well. I was reading an article from ' everydayhealth' and it said, most organs, only last 5 years, does anyone have heard this before? My husband is so angry at me for reading this kind of stuff! I didn't look for it just ran into it! Thank you!
Dizz
Obviously there are all sorts of variables but the MINIMUM hoped for survival rate post transplant is 5 years - in reality if all goes well most recipients go on to live a normal lifespan. Britain's longest surviving liver transplantee had his in 1975 and as of 2015 was still going strong & hit is 70th birthday then. Since the time of his op the surgery techniques, the preservation and reactivation of organs and the post operative drug regimes have improved no end so people are living to ripe old ages with their new livers with less rejection and less complications - yes there are still instances where the 'happy ever after' doesn't quite work out but the majority do and you generally live longer with your new liver than you would have without the transplant (it is life saving surgery).
Wishing you all the best and I kind of do agree with your hubby - you have to be cautious what you research and read online.
Katie x
Thank you AyrshireK and Brummi! For setting me straight! I am not afraid of dying, I just like to plan my life ahead and do things that important to me! my husband has this plan to buy a home by a lake or river, I want to travel see the he world since I never had the opportunity to nor the money! I want to take my grandchildren on vacations and just do things with them! Of course my husband gets upset when I read stuff like this! It interferes with his plans but the bottom line is, I like to read about liver transplants since I've been trough it! Some, very pleasant to read and some not so much! Since, god gave me the gift of life, I don't care about material things, new car, new this and that! Anyway, didn't meant to write a novel here! Thank for the info, i really appreciate it! Stay well & safe!
Dizz
Please make the most of it and live the life you have to the full. My hubby has cirrhosis due to auto-immune liver disease. He was listed for transplant for 10 months but is deemed to be doing too well and has been delisted for 2+ years now. He feels no better but his symptoms are all 'quality of life' related rather than risk to life so he is stuck, dragging himself through each day with no relief in sight and just feels his life is wasting away unable to do all the things he wishes and few of the things he used to be able to do.
Please don't waste you new life fretting about the what ifs and maybes grab each day with both hands and do all those things you and your hubby desire. Go for it .............life is not a rehearsal (my hubbies motto before his illness struck).
All the best to you, Katie x
Katie,
I am sorry to hear about your hubby! I am glad he has you to look after! I really hope his situation changes for the best! I go for my 4 month fallow up in a couple weeks, it's been 4 months when I got my liver today! May 15- 17 :). I hope doctors tell me I can travel some, I spend to much time in my room doing nothing from being sick so now, I am ready to live my new life! Thank you so much for the advice! Keep smiling & stay well!
Luc
Happy to hear you're doing well. I had my transplant last December and went on 2 holidays this summer. Even managed to get a little tan with all the sun cream! (I know I'm not really supposed to 😊).
I obviously want to be around to see my kids grow up and get married but I'll certainly make the most of what I have left.
To those who have had a transplant, congratulations on your new life. To those suffering from this terrible disease, I sincerely hope you get well soon!
KO_1234
I am with you, on the tanning lol... it was so hard for for me looking at pool and not being able to jump in 
you will leave to see your kids grow up and do all the things you want to do! Thank you for your best wishes! I wish you all the best, stay safe!
Luc
Katie I don't mean to be a bummer but like your husband I wasnt de-listed I just never got put on the list. I had the same as your husband they left me for 5yrs then 1 day I went in for a normal check-up to be informed that if I didn't get a transplant then I would die. That was on the Friday and by the Sunday I had my transplant. However after it i had a seizure then a stroke not saying that is what always happens cos I haven't heard from anyone who this has happened to. I now have epilepsy, ataxia and im anemic they say I'm a complicated case. I hope your husband doesn't suffer anymore and gets a transplant soon.
Take care ❤
Hi Katie. Thats such a shame.. i was often asked about quality of life and got the impression from the Assessment Clinic and Consultants that it was a big factor in deciding to get on LIST or not.
What a shame. Its odd isnt it, you have to get worse before getting arrention. Im sure my decision was prevaricated because i kept getting told “uou’re looking well”....Aaaaghhh
Good luck to you both.
Quality of life when it's related to the maddening itch of pruritis or inability to move with ascites, oedema etc. etc. yes these are taken into account for quality of life for t/p but fatigue, brain fog and that sort of thing then no because actually they can't guarantee that post transplant you'll be any better off.
My hubby gets told he 'looks well' all the time and indeed looking back at 2012 - 2014 photographs he certainly does look a lot better, better complexion, weight gain, muscle gain, he can now walk miles on days out ok not every day as he used to do and certainly not in the quantity of miles he used to as a long distance walker but we've seen people at clinic who were unable to walk from chair to the scales so in the grand scheme of things he's doing ok and we just trust if the need arises for t/p in the future he'll get his chance.
Katie
Hi, on the radio today a lady was chatting, she had her liver transplant done in 1985, she also became well known as being the first lady to give birth after her transplant. So no one can really put a time limit on how long you can survive after a transplant..
Thank you Brummi! I think it has a lot to do on how you take care of your self and I I try to do that but the only thing, I am always hungry lol, after the transplant I couldn't eat and mainly because food didn't taste good, one day, I woke up very hungry and my husband make me bacon & eggs and they were so good! Yay, I got my taste buds back! I haven stop eating since then lol.... I can't gain weight though!
Be safe and well
Luc
Hi, it takes time to get your taste buds back but when you do food taste better. I'm struggling to put weight on as well.
I am 3 months post transplant. After transplant I couldn't eat. Food actually made me gag. Liquid protein shakes was the only thing I could get in me. One day however, food tasted good! I had all the fatty stuff I used to deny myself. It was all so good. However, now I have had to stop and change my diet to not include the fat at the same rate. At first your metabolic system is spending so much on healing and feeding your new liver. But that doesn't go on forever. My liver numbers are where they need to be now. I have a happy liver. However, the fact remains that fat is not good for livers forever. I do not want a Fatty Liver. I love my liver. My donor expects me to take very good care of her gift. Hang in there. You should be packing on some pounds soon. Every one is different. Your transplant coordinator will tell you when you need to eat a lot of calories or when you need to just eat healthy and a normal caloric level.
Try not to read too much on line , it can at times be scary , we are all different and not even a consultant can guarantee anyone's life span .I' have had cirrhosis just over 9 years
I am like Kate's husband . I'm suffering all the symptoms of end stage liver disease
Transplant has been mentioned , but thing is my ukeld score states I can go ok the tx list but my meld score in May was not high enough .. my health has deteriorated since then .my mobility is bad ; Mr memory is getting me in to all sort of problems yet .. I keep on each day with smile and a laugh .we do not know what's round the corner .not even healthy people so live your days doing what you can . .. Linda 😊
Hi Linda,
Thank you so much for the advice! No more negative reading for me! I am sorry about your. Conditions! I can totally relate to them! The memory lost, going in a coma for high ammonia levels! Feeling horrible all the time but like you, smile every chance I got! I am just that kind of person! I like happy! My meld was 31 the day of the surgery and to be honest I don't know the limit before your buddy gives up. Take care yourself, I hope you can get a liver very soon!
Luc
Hi Luc..your welcome
I did nothing but search the internet every spare minute I had . Didn't really help much to. Be honest with you
Thank you ... I'm hoping for some good news fingers crossed . Just eat healthy andgoof nutrition .
Your meld score is higher than mine yet I'm way off the chart for fibroscan reading so I'm f4 end stage .
Yes the best thing we can do is surround ourselves with positive thoughts and determination.dont let it hold you back .as much pain I am in and my constant insomnia and sleepiness I will cope with that as and when .hope things improve for you 😊. We can but wait xx
Millie09,
That's my problem, I get in trouble with my husband because I read to much! I already got my liver 4 months ago and doing fairly well! I really hope you get yours veré soon! Keep your positive actitude I was never told what stage I was, only the meld score which it was 31, I do not miss the sleepless nights, taking the lactose, ackes& pains etc, etc....I don't wish these things to anyone! Thank you so very much and be positive, your rainbow will appear very soon for you! Take care yourself.
Luc
Hey luc..so your post transplant ! How wonderful for you .I'm.so glad that things are going well .
As jojo and rodeojoe plus all the other members who have had their transplants have given such positive and very good advice .you do not really know how poorly you are pre transplant as you become used to the insomnia , lethargy, itchy skin , aches and foggy brain.oh and lactulose that isn't working .
You now have the start of a new life .. go grab it 😉xx
You are so so right Millie, the problems become the norm and you forget how you should be feeling (well i did). Except i never forgot being unable to drive (we have Nothing walkable where we live) due to HE.
PS im sure we all read as much as we can. I was always getting in trouble with my wife for saying “do you know what it says about....”
All the best Millie
One thing being poorly and having a transplant taught me is make no plans just do!! none of us know how long any of us have and in a way I consider it a blessing to be lucky to be taught that and no longer have our heads buried in the sand. So don't worry and live your life to the fullest x. And I am friends with 2 ladies who had transplants for 20 years +
Hi jojokarak,
I would like to do spontaneous things but my husband and I are not always in the same page lol....he's more like the staying home type of guy, I am totally the opposite! I guess I never noticed before because we both work, now that we are home is a different story! Thank you so much for your advice! My best wishes to you!
Xxx
Luc
That is exactly how I feel! Hi - I am Ashley! I transplanted Christmas day of 2018 so I am almost 9 months post-op, or 271 days if you ask my husband.
I tell people constantly that the most important words I will ever heear in my life were "You may only have a few months left...".
I am so INCREDIBLY grateful to have had that moment. I woke up. I was always a kind and decent person but I became a GREAT person. I was a fairly free spirit but I became FEARLESS. I loved and felt blessed when I was loved but I had no idea how much love my heart could give or hold! The wind ruffling my arm hairs makes me giggle. I appreciate in a way I never knew I could. When they were taking me to the O.R. I felt peaceful and unafraid. I knew regardless of where I woke up, I would be thrilled to be there.
Once in a while I catch myself slipping back to the old habits and forget that I can actually choose to make every moment a wonderful one but I am pretty good at catching myself!
My prayers go out to you all on this journey.
You read that wrong. There are statistics out there and they'll give you percentages of survival rates 1,5,10,20 years after transplant. But they're all meaningless from my point of view, the first years are likely to be caused by complications of the operation and after that side effects of the immuno suppressants drugs. Techniques and immuno suppressant drugs and treatments are changing all the time so people who survived 5 years today might survive much longer in 5 years time. People who survived 10 years today might survive much longer in 10 years time. Do you see my point? The stats are meaningless.
When I had my transplants I was on a medical trial and now take very small amounts of immune suppressants.
Last time I saw my consultant he told me about a potential trial he was considering for me. 6 months of self injections (Not sure what of) and then stop immuno suppressants altogether.
You are so right, Rodeojoe, being in this group has been an inspiration to me! The days I feel insecure, I come here and people like yourself make feel secured and peaceful so thank you very much! For all the info! Totally appreciate it! Be well & safe.
Luc
Could you tell me a little more about this trial as I spoke to one of the consultants a few months back about possibly coming off immunosuppressants but all he said was you have to wait for a few years and even then it's a very small percentage of transplant patients who can take advantage of it.
It's at King College Hospital (unsure if other hospitals are participating). Funnily enough I spoke about this trial with my consultant (Professor Alberto Sanchez) last week (Six monthly consultation).
So, I was on a trial when I had my transplant, it was called ThRILL here's the link gtr.rcuk.ac.uk/projects?ref...
In layman terms (in what I understand), blood was taken before my transplant (before any immuno suppressants), it was harvested for t-cells (plays a central role in cell-mediated immunity). These were "altered" (this is the bit I have no idea about) and then I was administered with them 3 months later.*1
The trial was a bit ambitious as I believe I was the only patient who actually had the treatment as I think complications after transplant stopped all the others. But what I got was a small dose that was supposed to get bigger in later trials on other patients. But the dose I had was enough to mean I'm on very minimal amounts of immuno suppressants now.
Because the trial I was on was very expensive and I was the only one that got to get the treatment (apparently my dose cost £30,000 just for the production of the t-cells) they are trying to achieve the same thing but in a more cost effective way. This involves self injecting the t-cells daily over a 6 month period, and the results should mean that the patient can give up immuno suppressants.
I've chosen not to do this trial because as it is I'm very well and on small doses of immuno suppressants. I really don't want to rock the boat and come out worse than I am now. Also the trial requires a number of liver biopsies which is not what I want (had some REALLY bad experiences of these in the past).
Also I'm now 3.5 years post transplant. The professor told me that it's not unusual for the body to accept the liver after 6 years and at that point there's a good chance I'll be off the drugs anyway.
Hope that helps :). Was quite a cathartic exercise writing that, hope I didn't waffle on too much.
*1 This was an amazing experience BTW. I was the first patient and it was in the research centre. The vial was transported on the back of an lorry, and in a large metal box. When opened it was all dry ice and had to be handled with "oven gloves". There were 2 nurses and three consultants to oversee what was basically mixed and administered as an intravenous drip.
Thank you for the thorough reply 😊. I'm also at King's but not sure if this is something that would apply to me seeing that the trial seems to start before the transplant. I'll ask at the clinic appointment later this month anyway.
I would love to come off immunosuppressants as I feel I'd be a lot more relaxed about potential complications arising from a weakened immune system.
I'm on 5mg Advagraf daily. What's your dosage?
I believe you might be in luck as I don't think the trial requires a blood sample before transplant. Definitely ask!
I'm on 1 mg sirolimous. I think sirolimous is a bit less toxic than the tacrolimous (Advagraf). But I think I'm only able to use it because of the trail I was on, usually it wouldn't do the job.
No one knows how long they have and when ever it happens weather you are 50 or 100 nobody's ever ready there's always something you have yet to do or see 😊 So just use my coping strategy it's called denial lol x
You are so right gaynorlowson, I am a religious person and I believe that when the lord call my number that's when I will be done! Lol... thank you very much! Take care.
Luc
I am not intending to 'peg it' until I am at least 80 years old. Why? I made a promise to the donor I'd get her liver to its 100th birthday. Anything after that is a bonus!
I'm staying positive 🤓
Nutrimar, you are so lucky, to have met your donors family! I am hopin I'll get to meet my donors family, I need to write a letter to them and hoping they will accept it! With your great attitude, you will live to be 100 and more! Take care. Thank you!
Luc
Hi Luc.
Unfortunately, I never met the family nor have had any contact after my letter to them. The promise I made to her was in my heart. But thank you for your encouragement. I live daily by the Grace of God. 🤓
Meeting my Donor's daughter was a very healing experience. It was hard at first for her and I felt terrible. It is such a delicate situation but she needed to see me. She needed to know her mom was "safe" with me. It gave me the opportunity to properly pay my respects. I was grieving for my donor and family from the moment I found out that I wasn't a partial transplant candidate. My donor's name was Rose. She was 52. Her daughter and I are both named Ashley, we are 3 years apart in age and she lives 15 minutes away! I encourage everyone who is given the opportunity to definitely reach out and hopefully give them some closure. If you are lucky, you may make a lifetime friend. I did.
It depends. Mine lasted 10yrs but I know people who's have lasted 15+.
Don't be worrying about it,enjoy the fact you have life back and take pleasure in everyday.
I met a woman who is 21 years post transplant. A beautiful thriving woman that gave me so much inspiration. I am only 3 1/2 mos. post transplant; however, after meeting her I feel very confident. I have done very well and my clinic/hospital has a yearly celebration every April for all transplant recipients liver, kidney, heart, any organs they have transplanted. They have asked to speak of my story to transplant. I am very honored to help anyone who is needing a transplant. It can be overwhelming and for me the recipients that I met helped me understand courage and positivity. I look forward to the day when I can volunteer to help tell others of this life changing miracle of life. I hope your liver lasts as long as you continue to enjoy and embellish all of life's miracles. meme7 xx
Meme7, how nice your clinic having the one year celebracion, mine is coming up in may but have not heard from my clinic about them having a celebracion for our first birthdaysJ as far as I’m concerned I was born again on may 15- 2017 😀 meme7, you are going to be great inspiration for others as you were for me! I wish all the best and keep up the good job inspiring others! I would have loved being there to hear your story!
Xxx lucdizz
I am 10 years next month post tranplant i hope that helps you xxx
Yes! It does Helenatonge! Thank you very much! I hope you have many, many more!
Xx
Luc
I had a liver transplant 3 months ago. When I was attending the classes and gathering all the information about transplants, you then get to meet a volunteer who has undergone a transplant and was very successful. This lady was probably in her 70's. She was amazing! I was transformed after meeting her. She was 20 years post transplant. Beautiful, intelligent and full of advise. One thing I took from her was her positivity. She had strong faith and we shared that. STAY POSITIVE! of course there are risks. Just do the best you can to stay strong and have faith in all being good. If you read negative posts or just some online research can be scary. Let it go. Search inside yourself and you can find all you need there.
Hello meme7,
And everyone who has commented on this post, I really enjoyed reading all your replies! Meme7, what a beautiful story about the lady 20 years post transplant, bless her heart! I wrote this about 2 months after I had my transplant, its been almost 10 months now and I am such a positive person now, no reason for negativity! I was googling Way to much about post transplant that I became obsessed with it! I am very happy to say, I have let it go completely! Thank you very much for the great advice and I hope you and everyone are doing great as I am! I still get those feelings in my spongy stomach, leg pains but nothing compared on how I felt before my transplant! And I mean NOTHiNG! God is great! Life is great! I am so thankful for every breath I take and every move I make, like the song says lol ...every night when I say my prayers, I ask God to give my donor a BIG Hug because without him or she wouldn't be here today! God bless you'll
Xxx
Luc
Thank you Luc. I am so blessed every day. It sounds like you are an amazing person. Spread that positivity. Its all good after you have faced what we have. Everyday I thank my Donor angel and God. Life is Good! Spread the word!
Thank you so much meme7, me to I’m very blessed! I haven meet my donor families yet but I am hopeful I will after my one year post On may 15 of this year, you are so lucky to have met your! YES, not a day goes by that I don’t thank god, I also tell him to give my donor a hug and a kiss, he knows the person he put in my life to saved me 🙏🏻 Thank you again and stay well.
Xxx dizzluc
Hey, Luc. I am one week away from my ten year anniversary - April 8, 2008. The only problem I had was when the doctors hit an artery while doing routine biopsy a year or so later. Since then I have not allowed any more biopsies. Other than that incident, I have really had little problems. And I have my life back. My closest buddy is my nine-year old grandson who was born a year after my transplant. I restarted my appraisal practice and life is good. My numbers are fine, I walk a couple of miles a day, and I have altered my diet. I have no reason to believe that my new liver will ever bring about my demise and the doctors expect a normal long life.
Hi tenyearsafter, congratulations on your ten years anniversary! I’m very happy to hear you are doing well, keep it up please! Next month will be one year for me, Other than legs hurting and potassium going up I’m doing great! Thank God! That’s horrible about your biopsy but glad your made thru okay! Going for my one year fallow up and I hope I will do as good as you! I can tell you that my life is absolutely terrific compared to before my transplant! Not a day goes by that I don’t thank God and my donor for giving me this beautiful new life! Take care of yourself.
Xxx Luc
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Four weeks post Liver transplant
