Transplant panel meeting

[Fastkat]

After 2 weeks of waiting I should have gone through transplant panel today giving me a yes or no. Just found out panel happened but I wasn’t discussed and no one has phoned to update me. I now have a miserable weekend ahead because they don’t have the sensitivity to keep me updated on what’s going on.

At times I feel your just not treated as a human being. I have had numerus days like this this June when my assessment started.

Any else feel like this?

[carmik]

Happened to my hubby two meetings when he was passed over due to emergencies. Got there 3rd time round.

You will get there hang on in there

Good luck

[1football]

I don’t understand the wait, I went in for 3 day assessment and was told at end of 3rd day. Why do others have to wait it seems so unfair

[Fastkat]

Just had a call off coordinator. Afraid I have a no as CPEX test didn’t reach requirement. Will find out more next week.

[LAJ123 in reply to Fastkat]

Hi,

Hope this helps.

Following my transplant assessment I had to have a further cardio pulmonary exercise test due to a co-morbidity (diabetes).

Then, despite being alcohol free for nine months had to attend alcohol / psychiatric counselling and assessment.

It was disappointing to not be listed immediately but they have to be certain beyond any doubt that you fit the criteria for transplant.

My surgery took place two weeks after being listed and two years later all is well.

Jim

[vulnerable in reply to LAJ123]

Great news hope mine goes as well x

[Fastkat]

Thanks Jim

I am 18 months alcohol free and will never drink again.

Most consultants don’t believe how well I look despite the figures telling them I’m seriusly I’ll .

I have been training on and off since June having a best score of 7.6 on CPEX testing( you need to score 9)

I’m a viable person but my only offer was palliative care given in June. I wasn’t expected to see the Xmas just passed.

Well I’m still here and still fighting but it’s becoming a losing battle after my latest rejection.

Trying to stay motivated !!

Andy

[Hidden]

Which transplant centre are you at Andy? Perhaps you could ask to be referred to a different hospital.

When I was recovering at King's, I met a lady who was sent from Queen Elizabeth for a second opinion. Could be a similar option for you too.

Good luck

Klodian

[Fastkat]

I’m at QE but have always thought a second opinion wouldn’t help. They are acknowledged as an excellent centre which I wouldn’t dispute.

I fear I’m running out of time and my UKELD score is very high at 69.

As I say most people/ consultants don’t believe how well I look. I must be a good actor!

I simply can’t pass this aerobic test!!

[Lesleylc]

Hope you hear soon..good luck

[Fastkat]

I’m still no for transplant but my consultant spent an hour with me discussing my condition and advising on physio to get my anaerobic score up.

I will be considered for a review if my fitness improves so I’m ok with that.

It was strange getting a call at 7pm from a liver coordinator to give me the result of the panel meeting!

[66766]

Have they said what % of liver function you have left and if you are decompensated?

[Fastkat in reply to 66766]

I am decompensated and was at diagnosis 18 months ago.

UKELD of 69 indicates poor condition