*long email and detailed so please skip if don't want to read*
I HAVE HAD MY TRANSPLANT!!!!
They definitely told me that no two people are the same with a transplant and I was one of those people. Before you read this, everyone who I was in hospital with were what seems a more typical in and out of hospital after 10-14 days.
I had my actual transplant on 5 Jan 2017 and was in hospital a total of 45 days and came home last Friday 10th Feb. It's definitely been a journey and I'm lucky to be alive. I nearly died as I was admitted on 29th Dec 2016 and prioritised on the list (bilirubin reaching nearly 600) As you know, I had been on list for 4 months, attending routine monthly clinic Appts and just waiting. I became very poorly literally overnight - swelling, the jaundice, pains and needing help and ambulanced to hospital.
I'm leaving lots details out as don't want to waffle on but they prioritised me to top of list as it really was a race against time for me to get a liver.
I was in hospital for New Year's Eve and my 42 birthday before my transplant but I was so sick that I didn't care. They were just days of the week. I just knew I needed help.
Anyway, operation was 8.5 hours and my co-ordinator was fantastic and kept my very worried family updated. They saw me in intensive care and I was stable and they were told to go back to hotel after being awake more than 24 hours.....,they were then telephoned as I was rushed back to theatre 6 hours later as they thought I had a blood clot. Thank god it was a shadow and they opened me up and gave me a "flush" to be sure.
A lot of people I met in hospital in a "normal" transplant turnaround were in ITU for 2-3 days. Not me, I was there for 2 weeks and very unwell.
I left ITU and went back to the ward where I was for 7 days before my transplant where I remained for the further 3 weeks. I was very poorly going back there and had an impressive 20 litres of fluid in my body but with fight and determination I got back on my feet with physio, resting and getting strong I did it.
Everyone knew me in there from professors, surgeons, heptologists, nurses, tea lady etc. The professors and top docs all told me after 3 weeks how very lucky I was to be alive and how desperate things were becoming for me.
I'm at home now, weak, tired, still loosing the swelling and weeing lots lol. Transplant was 6 weeks ago on Thursday and I'm 3 stone lighter! They told me to "eat like a pig" for 3 months to put weight on. A lot of my weight loss is due to the massive weight gain I had the week before op as I gained 2 stone in 1 week in fluid!
I'm now focusing on getting better as I have a bigger recovery ahead of me than some people. I don't care how long it takes me to recovery - even if it's the whole of 2017. I know I'm so lucky to be alive and forever grateful to my donor and their family for saving my life.
My family told me that within the first 2 days my bilirubin went from nearer 600 to 185 - how amazing is that. I am now PINK and not yellow and when I left hospital it had dropped to a reading of 27!!!!! I have white eyes and really soft skin and the strongest nails ever.
Hope this email has not been too much of a shock to read, know it isn't an easy read but......I'm here, I'm alive, I made it, I was strong, I was determined and I know I'm a fighter and I never ever gave up on my life no matter how close it came at time.
It goes to show to our forum family of people who have had their transplant or to people who are still waiting, we are all strong. I wanted to share my "not typical" experience with you as I am another successful person on our forum to receive a liver transplant. Keep fighting, believing and staying strong. I will stay on forum and keep supporting everyone and now asking questions now I've had my transplant.
Not even the queen could get a better birthday present than me, I was 41 arriving at hospital....turned 42 in hospital on 2/1/17 and 3 days later on 5/1/17 - I received the greatest most precious birthday present from my donor and their family. Forever grateful ✨
Much love to you all. Nicki x
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nickiwj
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Hi Nicki, you have certainly came through the mill I'm so pleased for you I hope you continue to heal with no more problems God bless and the very best wishes.
This is such great news! I was never deemed to be in need of a transplant, even though I have alcohol-related cirrhosis - but I'm one of the lucky ones. I always worry when someone here on the forum is waiting for, or having, a transplant, and I do so love a happy ending
very happy for you .you have been through it ! but give yourself time. you post was a great read it has given me the hope and courage that when and if my day comes I will get through it. take care of your self and I send my best wishes to you 😊
Millie, 9 women I met in 5 weeks all had a transplant, up from ITU in - days, sitting in chair, then walking with frame and getting stronger and stronger and left in 2 weeks to go home. I wanted to share my experience as no two people are the same but I got through it and so will you. I stayed strong, I would fight and win ever hurdle and challenge I faced 100%
Hi, what an ordeal you have had and how nice it was that you took the time to tell us all about it. A very interesting read and how lucky you've bèen to survive. Congratulations on your new lease of life.
Haha you. Trust you to say that hahahaha. Mind you my family and friends have said I look so much younger and healthier since having my transplant so age is just a number..😂😂💕
Hey!, recovery is a long road but we are with you all the way. Just take it steady ( no skateboarding ) and you should make good progress. Take care...
You have the right outlook and sound like your ready to take on your recovery... Lots and lots of love and hugs Hun... My husband says it feels like you have been given a new responsibility - to take special care of your new gifted liver...
The scars will become a memory of what you have been through and remind you every day of how lucky and blessed you are.
Thank you Pear. I. So blessed and know my new liver came from a very strong person to get me better after being so poorly after my operations. Your husband is right, we have been given a wonderful gift to love and look after forever xxxx
Amazing to hear. So happy for you. Remember reading earlier posts from you -my husband is on the list and we feel it will be months yet by interesting how you were ok one minute and seriously ill the next. That's what some dr told Us -the liver can hold out and then sometimes nosedive.
Thank you Katherine. I had only seen my consultant in clinic 2 weeks before being admitted into hospital and monitored and had blood tests. Been getting worse since Nov 2016 when swelling started a bit but I literally deteriorated overnight. The liver is an amazing organ and so important but mine decided to go into shut down mode.
Thank you Rodeojoe. The fluid has been hard work. When I left ICU and back on wars, I could only lift my head off pillow due to whole body full of fluid. Prob like you, a long recovery but I'm getting there. How our bilirubin can go from 600-700 back to normal within 6 weeks has blown me away with shock. Im forever grateful for my new liver and looking forward to my new life xxxx
Hi hunni I am soooooooooo pleased you have had it sorry it was an ordeal but I know your a strong one you have just proved it xxx like you mentioned we all have different experiences but as you say you know what a special gift we have received. You make sure you take it easy whilst you build your strength up least I know now why I hadn't heard of you for a while x. You know where I am if you need a chat xxx
Defo went off the radar for a few weeks and lovely that I had a few messages from forum members asking if I was ok. Was sure to post as soon as well enough and home. It really is like having another family on the forum.
I'm so blessed to have received my new liver in time to save me and will defo build myself up slowly.
Hope yr ok, haven't had chance to read yr posts or any other posts yet on forum xxxx
Thank you very much. Didn't want to be too detailed with my experience but felt it important to show how no two people are the same. I did have a rough journey but was very sick when being admitted into hospital. The Royal Free hospital were amazing from the professors to my lovely lady who made us our cups of tea.
We are all strong people and I know so many of my family are now on doner register because of how poorly I was.
Hello Nicki: I just happened across this page for the first time today, May 30, 2018. I realize a good bit of time has passed since your surgery. Are you doing okay? I do hope so. I am also one of the lucky ones--I had a liver transplant on 11/11/14. May I say without too much boasting I am doing fantastic. At 66 years old, though I'm retired I do construction labor on the side, to pick up a few extra bucks, to keep active, and BECAUSE I CAN. I had an easier time than you. I wasn't exactly feeling sick prior to surgery, just weak and a little confused--"brain fog", as we call it. My surgery lasted 4 hours, 1 day in ICU, one week in hospital, zero units of blood used during surgery, and my symptoms disappeared instantly (to continue boasting). Anyway, I wish you the best from across the pond.
i have just to say "YEEEEEESSSSSSS"!!!!! we made it and we can be proud and thankfull to be alive. i am actually quite young (32) and my transplant had happened last year 13th of june...so not so long after you.i was quite sudden because everything had happened sooooo fast..bit shorter version..looool i just became feeling unwell,was in hospital for over week when they didnt know whats happenning so they transfered me to liver specialists..after couple days they had to put me in induced coma how unwell i became (and confused)..and especially they didnt have any liver for me...so..it was sooo close call when i was almost two weeks in coma and at the last moment got doner (thanks god).after i was home like 3weeks after..not for long..tests were "wild" all the time so also i was in hospital in and out. at the end i ve got much better but 2months they had to open me again cause they had to fix 3-4hernias i ve developed somehow..so back to begginning and of course it isnt easy..but how is my motto forever "NEVER GIVE UP"
now i ve got some problem that i cannot sllep at nights so its even more harder but we cannot ever give up..
happy fighting/recovering aaaaaaaaaaand NEVER GIVE UP!!!!! and of course,wish yyou early recovery..
P.S.:oops bit longer than i ve wanted but hope its okay..lo0l
U will get well soon.. There are many kids who needs liver transplant to be done and I know the best doctor who has many success rates for liver transplant especially for children.The website is drneelammohan.com/ and may help any kid who needs an emergency. take care
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Hello gang. HNY. I received my donor liver transplant!!!!!!!!
