Well here we are 2 weeks after waking up to find the op didn’t happen and got to say after 15 months the last 2 weeks have been really hard, waiting for that call again knowing that it should be close is driving my nerves up the wall you try to switch off and live for the day but struggling to do that am not feeling sorry for myself as know others are in exactly the same situation. How long have any of you waited for a 2nd or 3rd call?
Huw
Awe Huw I feel for you it’s such a roller coaster - hopefully you will get the call soon xxx
Thankyou so much x
From what I have seen its pure luck, I was called once and first wasn't suitable but another came and it was a go in just a few hours, never left the hospital. A friend had 11 calls spread over months. There is no reason to believe that having had a call that within 2 weeks it will have happened again, the list is constantly changing animal. Hoping lady luck is with you. x
Thankyou I do realise that I could wait a fair amount of time and need to get on with life and not constantly thinking is it today, sounds unreal that you had another chance while still in hospital that’s blown my mind but your friend WOW 11 calls that’s increadable. Bring on Lady Luck
Hi huw, I was lucky enough to have my transplant after the first call so I don’t know first hand how you are feeling but I know how it felt being on the list and I had to make a conscious effort everyday not to obsess about the phone, I was a bit of a nervous wreck, I hope you don’t have to wait too long , 🌸🌸
I do feel for you. My son had the call on 4th Feb but on Monday 5th at 5pm they finally told us it was a no go. The next day driving to work I was in tears as it suddenly hit me how hard it was to go back to waiting after getting a false alarm. I picked my son up from college at 3.30 and on the way home the phone rang and would you believe it was a second call! This time I went in actually telling myself it wouldn’t happen but luckily it did at 3am the next morning.
I hope you don’t have too much longer to wait, it will all be worth it when it does happen though x
So happy your son got the transplant and Thankyou for your kind words his is he doing now ?
He is going great thanks, he will be 5 weeks Pt on Thursday and to see him now you really wouldn’t know what he had been through. He is hoping to return to college and his part time job after the easter holidays.
Really that’s insanely good going, hope his recovery continues and he gets back to living life which sounds like he will. Hope your stress levels are easing also
Congratulations to your son and your family. I'm a little over 4 months now. For the most part I'm doing great! Had and have some issues but the liver numbers are good. It's so good not to have the phone "tied" to me anymore!!
That's great, so pleased your son is doing so well xxxx
Hi Huw, Soon! Soon! Soon! My thoughts are with you. Keep your hope. x
Thankyou x
You are very welcome. Here anytime to talk. 🌟
Hi,
My friend waited only two weeks after his false alarm.
Jim
Hi, I got my second call after a couple of days. It was all systems go until they started opening me up along a previous resection scar. Huge haemorrhage, 25 pints of blood, coma for 12 days, wife told I only had 12-24 hours to live. Came to eventually with same diseased liver, removed from transplant list immediately. Told the future didn’t look too great and maximum I could expect was about 6 months with the wind blowing in the right direction. That was 15 months ago and life is good albeit with the odd challenge. Getting time to work my way through my bucket list, Russia done, Singapore and the Far East in about 3 weeks. Cheltenham for possibly the last time this week. I understand your frustration but just keep the faith and it will happen. When it does grab it with both hands and enjoy every single day. I know I do.
Ray
God bless you and good luck, Cindi
I had my first call in September in the middle off and second one was 11th of October ... I really hope it's soon for you but as you say you need to just get on with things until it happens. The main thing is you have received one and now you know it WILL be happening x
Hope you get your new liver soon . Good luck to you.. I have Chrosis too ..
Hi
I really hope you get your new liver soon. Take care
Hi. After 10 years on the transplant list (liver) at Mayo Clinic in Phoenix, they called me in July, 2016, and told me to be here now! (we lived in NM) They were ready for me. (MELD only 16 but quality of life was getting pretty bad) So we got an rv, sold our home and business in NM, and moved to an rv resort not far from Mayo. For the next 9 months I was called in several times for a possible transplant. Once I was taken to the OR and put under, only to wake up and find it didn't happen. I became stressed and depressed. Finally, in April, I told my dr I couldn't take it any more and needed a break. He said fine, take a vacation. So we did. The twist: my dad lives in WI and kept sending me newspaper articles about UW Hospital in Madison's transplant center. In February I had flown up and applied to be on their list as well. They accepted me but told me they wouldn't give me a liver unless I had a living donor because my MELD was too low. A few years ago my sister had tested to be a donor at Mayo but they'd turned her down. Last summer she went to UW and tested, and they approved her! I had the transplant on Oct. 23, and am doing very well for the "most part" haha. There are always issues. But "our" liver is good.
My point is, I understand your feelings. You know, many people are on lists at more than one transplant center. Through incredible luck and a fantastic sister, I got my new lease on life. It will happen for you, too.
God bless you, Cindi
I haven't had 1 call yet due to complex dr stuff making it virtually impossible to get one.Mine is a case of it has to be a full moon,with an eclipse when aliens have landed and everybody grows a second head and monkeys really can fly with pink elephants.
Heyho if it happens great if not there's a bottle with my name on it.Not a feeding tube up my nose.I'll have my wake when I'm alive.A drink would be good after 20yrs but only if.
When I was in after my transplant a man came in who had 6 calls to go to the hospital - I was lucky due to the new ‘test rig’ that was developed at Leeds hospital and most transplant hospitals now have them now. My liver would have been rejected as it’s condition on arrival was not good, however 4 hours on this machine it it became viable for transplant. Hopefully more people will receive livers and waiting times can be reduced. I can’t imagine what it must be like to be sent home once let alone 5 times! He did go onto have a successful transplant and went home before I did! X
Is waiting up to 20 weeks to see a liver doctor normal?
To all going through liver disease and transplants
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