Suspended from transplant list

[Dakota85]

Hi I'm new to this but I have been on the liver transplant list with the last year but I got a phone call last week to say I have been suspended for 3 months it was a bit of a shock but can somebody let me know what it means to be suspended from it please would be very much appreciated.

[AyrshireK]

What is the current situation with your liver?

I know they can suspend you if you have another illness going on which would make transplant too risky (you normally have to notify them if you say have the flu or a cold or any other infection & that can lead to suspension). They can take you off the list all together if your liver numbers have stabilised meaning you no longer meet the criteria for transplant (that's what happened with my hubby - he was listed June 2014 due to Auto-Immune Cirrhosis but delisted May 2015 and has never subsequently gone back on it - he's back to the watch, wait and monitor stage) and they can take you off the list if your health has deteriorated too far or if your weight or fitness levels have made transplant too risky.

Hopefully what ever the reason for suspension you do get back on the list after the 3 months - if you are fit enough then enjoy the release from the restrictions of 'life on the list'.

Katie

[Dakota85 in reply to AyrshireK]

At the moment my liver is stable as my fluid retention has become stable. The problem is that I'm well enough to have the operation but not sick enough this is why they suspended me. So what id like to know is can you leave the country and go back to normal life for 3 months.

[AyrshireK in reply to Dakota85]

Similar situation to my hubby - actually too well for transplant. If you are off the list then you arn't going to get that call - the restrictions of being on the list are lifted. My hubby and I bought ourselves a new caravan when he came off the list and started going living life to the full, going further away from home than we'd been allowed to whilst on the list etc. Going abroad hasn't been anything we've considered but I don't see why you can't providing you can get insurance and your doctor will allow you to fly or whatever.

See is at a positive, I know when my hubby was delisted we had mixed emotions feeling like the light at the end of the tunnel had been snuffed out BUT if you are well enough to not need transplant it's a good thing ...... ok you'd rather have the golden ticket of life renewed but there are no guarantees with transplant and sometimes its best to make the best of what you've got.

All the best, Katie xx

[Dakota85 in reply to AyrshireK]

Thanks so much Katie and yeah u hit the nail on the head I have so many mixed emotions but as you said look at it as a positive like all my family have told me it's just hard but I will work on it. Thank you for your advice and for replying to my post much appreciated.

Sandra xxx

[AyrshireK in reply to Dakota85]

I absolutely get it - you want your life back as no doubt you are nowhere near 100% fit. However, having been a member on here since 2012 i've seen how transplant doesn't necessary always guarantee that 'happy ever after' and sometimes you are best to make the most of the stable period. Transplant is in reality a life saving operation only, if you arn't poorly enough it is good news.

If your condition worsens then just like my hubby, trust that you'll get back on and your call will come. In the meantime do make the best of things.

Katie x

[Dakota85 in reply to AyrshireK]

I will definitely try and thank you again you have been a great help it's nice to talk to someone who understands what it's like thank you so aswell for listening and getting back to me.

Sandra x

[Delahunt in reply to AyrshireK]

Katie your right so true best wishes tracking wishing you hubby best off health enjoy 👍🏻🌺

[Delahunt in reply to Delahunt]

Katie I Meant best wishes travelling not tracking lol

[Barnetaccounts]

Hi Dakota, I was listed because I had NASHand HCC. This was a year after a resection to remove a tumour. I was told the wait could be short or it could be long as the entry point was exactly the same for both procedures. After 12 months I suspended myself to go abroad for a week as the waiting was now causing me severe mental issues. I recharged my batteries and came back in a much better frame of mind. My call eventually came on 17th November 2016. I went to theatre and I am told that more or less as soon as they opened my existing scar up I haemorrhaged and this caused the transplant to be aborted and turned what should have been a new life into a battle to save me. I was transfused with 25 pints of blood, which was enough new blood to kill me as my old liver could not process it, but they got me up to ICU, called my wife and kids up and told them I probably would not last the night. I spent 12 days in a coma, and every time they took away something that was sustaining me I somehow kicked into gear and managed to do it unaided. The last piece of equipment was a breathing tube which again they informed my wife that if I couldn’t breath unaided they would not put it back in. I eventually came out of the coma to be told by the medics what had happened, that best case I would last 6 months, no more embolisations, and it was unlikely I would ever get out of hospital or a hospice. Well here I still am, driving people mad, playing with my grandkids, travelling like a lunatic, since leaving hospital I have been to Russia, Sweden, Denmark, Malaysia, Thailand, India, Sri Lanka, Oman, Dubai, Abu Dhabi, and will return to the Carribean in November. I’ve told you all of this because sometimes things don’t work out the way we think they will. This is a major procedure with a reasonably long rehabilitation. Your suspension is a positive thing it means you must be either too well or you have other issues that would prevent you from being a candidate. If it is because you are too well, enjoy the break. There should be no issues around travel other than insurance. Just for your own piece of mind discuss with the transplant co-ordinator the reasons you have been suspended and any restrictions they may advise as to travel and then go and do it.

Ray

[Dakota85 in reply to Barnetaccounts]

Thank you so much Ray for telling me your story you have given me insight to what can happen with the operation and Im sorry that you had to go through that and I hope you are coming out the better side of it. I am definitely seeing the good in been suspended and I am definitely going to do my best to enjoy the break in case they do decide to put me back on it. As I said previous thank you for sharing your story with me.

Sandra

[Denise15 in reply to Dakota85]

I have to support what’s been said. I had a transplant 3 yrs ago and the first one failed immediately and I was translated again luckily. I was in a coma from June to September and for me it was nothing but for my family it was an awful time. I had subsequent strokes so after I awoke in September I had to be transferred to another hospital for stroke rehab. I came out the other side and was discharged in December. As I say it was the family that suffered and I just had to concentrate on getting better. I’m 3 yrs on and the transplant has been wonderful but I’m still struggling with the stroke issues. I still consider myself to be lucky and lead a fulfilling life. So look on it as a positive you have been delisted and go out and enjoy. Xx

[Dakota85 in reply to Denise15]

Oh my that's sounds awful on both you and your family but I am happy to here that you are getting better. Yeah the more I read these stories I am realising it is a positive and that I need to enjoy this time in case I am put back on the list. Thank you aswell for sharing your story with me.

Sandra