Hi,
I have now been on transplant list for 7 months and it's getting harder by the day.i realise am very lucky in that am fairly well and still able to work although am having few days off due to tiredness.was wondering who else has waited this amount of time or perhaps longer and how they coped.BW huw
Oh such along time to wait ! My hubby just going on list and am so worried about waiting time . Hope u don't have to wait much longer
Thankyou,although they tell you it can be a long wait I did think it would be done by now, but there are people in more need than myself which I totally understand.
What hospital are u at love . My hubby at addenbrooks
I'll be brutally honest, i normally am! Stop counting, try to make the most of each day, look after your body and mind as much as you can, book stuff in, I started off putting off people visiting in case I got called, looking back seems silly to even consider. Don't let the wait control your life.
I've been listed just under a year, I know being blood group O I have a long wait, I don't let it trouble me, I can't change how long it may be.
Hi Dulux
I've never put people off visiting but I don't travel more than 2 hours away from hospital just in case.its hard at times to not think about the what if it's today mind games but I do try to get on with life. I work,do gardening walk a lot and generally lead a busy life,but the strain on my family hurts (although they think I don't notice or hear them) and friends who ask how I am so I keep repeating am ok just gets to you at times.
12 months for you so am a beginner really,just goes to show .you do sound very positive which I will take on board
BW huw
I live nearly 2 hours from Hospital so its far enough.
In the beginning, my sister was planning some visits from America, I initially wanted her to wait until after transplant, but it was ridiculous and she has been over a couple of times and its been great.
It is hard on family, I find everyone will talk to my wife but never to me as they don't know what to say, it drives her nuts. We also all get used to talking about our situation in a medical way, which blows most people away, also many people just won't get it, its not their fault they will just say odd things, one of my best friends told me they would probably give me some pills and I would be fine, my mother in law asked if they were going to do the transplant by key hole surgery! I don't let it bother me.
I find there are some people who do just understand, so if I am a little low I will talk with these people.
Its bloody hard, I'm not positive all the time and certainly don't have all the answers, its a journey of emotion.
I do try to only focus on the things I can have an impact on.
My husband is blood group 0 and once he finally got on the list he only waited 3 days for the call.Very successful transplant and so far so good. Keep the faith xxxxx
Everyone's wait time is going to be different. I've been listed since March and I know it's early days for me yet.
You'll drive yourself mad trying to predict when the call willl come. There is so much taken into consideration, more than just blood group and state of health. As Dulux said, just enjoy your time. Carry on with life as best you can. The call will come.
I waited 18 months and then they had to abort the TP due to a major haemorrhage. I will not be offered another one. Your overall health and compatibility to the donated organ will be the main deciding factor. Getting your head around the wait is incredibly hard for you and your family. Just making it to the list is a huge achievement, now its living life whilst trying to cope with the mad head and believing that one day the miracle will happen for you. You may find my blog useful 1liver1life.wordpress.com
Hi my husband was waiting since last October just like you thinking he was not going to get one he did on 12 July 2017 there called him had it now doing well don't worry you will get it 😂
Hi thanks for reply, really good to hear it's done & he's doing so well
Don't worry am here if you want to talk kim
i am 2 months post transplant
i had been unable to work for 19years... i could not keep warm was sleeping a large quantity of the day. struggling to do anything at all.
i was very very lucky to say that when I finally went on the list i only waited 6 weeks!!!
im really not sure how it happened so quickly but i can only think that it was how i was living like a zombie along with blood tests.
it is a huge op with its own risks... so they really don't like to do it until they have absolutely got to.
make the most of being able to still be active at the moment.... it will be the right time when it happens.
i thought it would be up to a year waiting... you just never know!!!
i had my long wait before going on the list..... every case is different.
my very best wishes to you... i know its easy to say but try not to put your life on hold... enjoy your life as best you can. its a hard slog getting over the op so make the most of all your time. cazer
1footbal-
It sounds like your liver it's not that damaged since you still working and doing things like, gardening, the waiting depends on how sick you are (meldscore) and also the Clinic or hospital you listed, I got listed on a hospital near me for over a year, i waited and no signs of me getting a liver I was very, very sick! My meld was 31 and didn't see to matter to them! My husband started doing research because he knew I was going to die if I didn't get a transplant! He called a clinic in another state, made an appointment, moved there temporarily! Best thing ever! My husband is my angel and my Lord guides him! 
I got listed on May 9 and on May 15 I was getting my new liver! I don't have a whole lotta memory but I was told my family were in tears of happiness! Now recouping and to me it's been the hardest but coming along slowly but surely! You hang in there, you will get your liver! Take care!
Diz
Omg Diz, I want a husband like yours. Glad u are doing good
Thank you so much Bachien! He's. The Best! I was released on our 30 anniversary from the clinic, he, tells me it was the Best preset l've ever given him! So sweet! ❣️ Believe me, being in a hotel room for over 2 months was hard, we got on each other nerves a few times! When you love one another! Anything is possible! Thanks again and take care!
Dizz
Your husband is a 🌟. Hope you stay well x
7265 sunlower~ thank you so much! I hope you are well too! 𗁫
6 months post transplant
Low platelet count.
Three Month Anniversary
8 month Soberversary!
Sometimes it's the little things that count
