Rejected for transplant

[Fastkat]

If there are people here who have been rejected how did you deal with it. Failed CPET again on bike as my legs have got weaker

[jojokarak]

I didn't fail on the bike test it was lung capacity I failed on a few times and it is frustrating but they do need you in as good physical health as possible to survive it's a huge operation and takes time to recover from. You just have to brush yourself down try not to let the this test effect your next try and just exercise as much as you can to build and keep your strength up it's all a fight every day and you have to show yourself how much you want it x

[Fastkat in reply to jojokarak]

Thanks jojo

My VO2 score at AT is 7.6 at best. I do suffer from muscle wastage in legs pretty bad too. (Pass is at least 9)

I am trying to do prehab training monitored by liver unit but I think the latest CPET fail will lead to a no. I have 2 weeks to wait to see liver unit. I’ve been trying since June and I think they want to draw this to a close.

It’s difficult to keep going isn’t it?

[jojokarak in reply to Fastkat]

It certainly is.. we just have to leave each disappointment in the past and try again it's unfortunately a journey of bumps .. but as your making such an effort I am sure they will take that and your muscle wastage into consideration .. don't give up we have been there xx

[Mushroom-71]

Hi fastkat I was turned down last year. Failed cpet twice they said my lungs wouldn't cope and to be honest with you I took it on the chin. but now I'm so depressed as I have no hope for anything and just sit and think how long have I got left. so I'm a cat in a bag waiting to drown. Hopefully you get accepted. Sorry for sounding so down but that's how I feel.

[Fastkat]

Hi mushroom 71. I’m sorry to hear of your situation as I try to decide what to do next. I’ve been trying to improve since June but my liver isn’t cooperating! I’ll keep trying a little longer as what’s the alternative.

Is there much support after rejection other than we can put you in you in touch with a hospice?

[Mushroom-71 in reply to Fastkat]

Don't want to face reality so sit and cry on my own and smile to visitors. I'm very false.

[jojokarak in reply to Mushroom-71]

Certainly don't give up I suffer with asthma and I had to do one when I had a chest infection and we didn't know I had one I think they thought I was the walking dead my score was that low ... Even if I couldn't get out for a walk I would exercise on my stairs over time I did build my lungs up x

[vulnerable in reply to Fastkat]

Awe don’t say that Fadtcat. Are you exercising walking etc all may improve your CPEXT keep going you have to! I did mine last week managed 9:38

[Mushroom-71]

I won't jojo as I have 28% lung function due to copd. I did beg and said I was prepared to to take the risk but they said no. And why risk 2 people dying instead of one. But thanks for replying.

[Barnetaccounts]

I wasn’t rejected for a transplant I was accepted and waited on the list for 18 months prior to getting “the call”.

I had previously undergone a resection and pretty soon after the start of the transplant I haemorrhaged and required a transfusion of 25 pints of blood. My family were told to prepare themselves for the inevitable and I spent 12 days in a coma.

Upon regaining consciousness I was informed that a transplant was no longer an option and my time would be measured in months not years if I ever managed to get out of hospital still alive.

That was 14 months ago and truth be known, I have not looked this healthy for years. I regularly have embolisations as part of liver management, and whilst I accept that my life will end when my liver fails, I think positively and with a whole heap of gratitude for the life I have led to date.

I am responsible for how I feel and personally would struggle to maintain an outwardly positive look,whilst secretly feeling depressed.

Do you have anybody to talk to about how you really feel. It is important that you understand that you are not being a burden on a close friend or relative, in fact they may be honoured that you trust them enough to share your real feelings.

Don’t underestimate that people can often see “straight through” the false positivity, and I can only talk for myself, but I have no problem letting my nearest and dearest know exactly how I feel, thus I don’t ever feel like I am going through this journey on my own.

I wish you well and if you have any questions or thoughts please feel free to ask away.

Ray

[Fastkat]

Hi Ray I’m sorry to here about your situation.

I do have have good support from family and discussed the worse case a while ago.

I’m not giving up but my bodies not responding well. My last resort is prehab training in hand with liver unit. They are giving me every chance possible.

Are you still able to walk and get about?

Andy

[Barnetaccounts in reply to Fastkat]

Yes not as mobile as I would like to be. I now use a stick. I just accept that this is the way things are. I write a blog about my cancer journey and it can be found at 1liver1life.wordpress.com I have tried to be completely honest about how this whole thing makes me feel. It also allows all my friends s chance to share my journey with me. I have a great sense of humour so I have been told. So this blog is the real me ‘warts and all’.

Funny, Serious, Happy & Sad.

I was determined right at the start of my journey that I would not be defined by “Cancer” and I will fight this with every ounce of strength I have. The reality is I have the easy part of this, it’s my family and friends have to deal with the uncertainty that my condition presents. I’ve only got to be where I’m supposed to be at any given time and do what I’m told when I’m told it.

That last bit is sometimes easier said than done.

Stay well

Ray