Heart transplant review

[Marley7500]

Hello all

I recently had four episodes of VT, two of which cause my ICD to deliver a shock and tell I was paced out of, this has all happened in the space of 3 months.

I've now been invited along to Royal Papworth hospital to have a review for a couple of days to see if I'm suitable for a full cardiac transplant. I was a like surprised by this and whilst my wife is excited at the prospect (god knows why!)... I'm very unsure about the whole thing (huge thing to happen to someone)

Anyway, had anyone ever had this review at Papworth, and can share what you expect from a realistic point of view. I've had lots of literature to read up and I'm told it's lots of tests for suitability they will do.... I'm fine with this, but would be nice to get an idea from anyone that has been through this and what your end result was to either be put on a waiting list or told you aren't quite as unwell to warrant this

Thank you all on here as always

[Alim783]

hi, what is VT? Sorry you’re facing this, I have DCM, HF and LBBB! Only 41x diagnosed last week

[Marley7500 in reply to Alim783]

Hello, sorry VT is ventricular tachycardia, where my heart beat (lower chamber) goes abnormally fast... I passed out once from it and my ICD shocked me twice to bring me back around ..

[Cherrelleford]

Hi. I've not been to papworth but I was under the transplant team at the queen Elizabeth in Birmingham. I went every 6 months til I was signed off as I wasn't poorly enough for transplantation due to medical therapy helping. It might be different at different hospitals but I first sat down with a nurse that had a chat about what was going to happen and spoke about symptoms and meds. I had chest x-rays, blood tests, ecgs, echocardiograms and the exercise bike (that was the hard one). After that I then sat down with the transplant consultant to understand the test results and the next move. Hope this helps a little xx

[MikeThePike]

Hi there, can I please ask why they are considering transplant? That seems a bit drastic to me. Have they considered ablation or has that been done already?

[Marley7500 in reply to MikeThePike]

Hi there, they have talked about ablation but they aren't confident of its success due to the location of the scar tissue which is why this has become more of a investigation/referral to get the process underway. They may say I am too healthy/well for transplant, I won't know till the assessment. I have deteriorated a bit in the sense that I get very out of breath just walking less than half a mile (a year ago I could easily walk 2/3 miles)... the concern is the cardiomyopathy is getting worse and the fact I had 4 triggers of VT they are a bit worried, people go years without issues - i managed just over a year and now had 4 episodes in less 3 months

[MikeThePike in reply to Marley7500]

OK, that's interesting, thanks. Just so you know, VT ablation techniques are now quite advanced so it's possible you may still be a candidate. EPs around the world have developed mapping and ablation procedures for tackling focal and multifocal ventricular arrhythmias. I'm sure you have done but if you haven't I would encourage you to read up on current PVC/VT ablation techniques. It can get a bit technical but it may help you considerably in your decision making. At least you would then be able to ask the right questions and seek treatment elsewhere if not satisfied with the answers. Best wishes.

[Calmac13]

Hi Marley

Sorry to hear about your travails , horrible when ICD goes off.

I had a similar experience to you and had a two day assessment at Papworth. My family and I were very shocked when this was proposed. It is a very worthwhile experience however, as you get a very thorough examination of your cardiac function with a team of specialists and doctors.

In the end I was not thought suitable for transplantation, and I’m now too old !

However , after medication sorted out at Papworth and a VT and a AV ablation I am so much better. My EF has gone from 10-55% with no more shocks.

So please don’t worry too much , the two days are very tiring though.

I wish you the best of luck and good health for the future.

[Marley7500 in reply to Calmac13]

Thank you so much - they actually rang me to run through what happens on the 2 days and does sound like a pretty thorough check up (which isn't a bad thing)