Transplant?

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Transplant?

Postby JasmineKelly » Mon Aug 04, 2014 5:36 pm

Hi all

Cardiac history in my email sig below - now awaiting my 5th ablation on 14 Aug having passed out on the tube the week before last. A reveal device or pacemaker has also been mentioned.

Was shocked on Friday to receive a letter from the Freeman hospital in Newcastle inviting me to submit blood samples ahead of a transplant assessment. It's the first time the T word has been mentioned, and neither the EP team nor GUCH team at the Heart has discussed with me . However, it seems to be an exploratory option following a case conference at the end of May (which was precipitated by another collapse and A&E admission). I guess I was missed of the cc list on the referral letter (have asked my GP for a copy but no joy).

Anyway, just wondering if anyone else has had a transplant assessment, or indeed a transplant, and what your experiences were. I have read the feature on the SF main site.

thanks
Jasmine
[i]Double inlet left ventricle and severe subpulmonary stenosis
Various atrial arrhythmias since 2001 and ongoing :-(
AP Fontan, 1985
Six ablations and four cardioversions, 2004 - 2015
Syncope
Declined Fontan conversion
Meds: warfarin & dronedarone
JasmineKelly
 
Posts: 27
Joined: Mon Feb 24, 2014 9:31 pm

Re: Transplant?

Postby ajc1974 » Mon Jan 12, 2015 12:10 pm

Hi,
I to had an assessment for a transplant when I was 18yrs old. It came totally out of the blue, and to be honest my mental health has suffered since. I'm now 41yrs old and after numerous pacemakers I feel, looking back I shouldn't of been told as nothing has come of it. It is however now that I feel the change as I'm struggling with exercise and working. I now do part time as a HCA on an acute medical unit, but I had 6months off last year whilst waiting for a Biventricular/ICD device to be fitted.
I have an appointment this fri with my consultant and i'm dreading the news. In my anxious wait for surgery last year I began smoking again, I'm just so tired of being unwell. If I'm honest I just want to give up. Depression has always been a big issue with me and I feel guilty and frustrated to say the least.

AJ
ajc1974
 
Posts: 1
Joined: Fri Mar 28, 2014 10:33 am

Re: Transplant?

Postby JasmineKelly » Wed Jan 21, 2015 10:46 pm

Hi AJ. I'm sorry you're not feeling so good. How did your appointment go?

I am 36 and went down to work 4 days a week last year. I also work at home one day, leaving just three days commuting. It helps a lot but I am still shattered by Thursday night.

My exercise tolerance has really deteriorated over the past year. But I just try and take it a bit easier.

J
[i]Double inlet left ventricle and severe subpulmonary stenosis
Various atrial arrhythmias since 2001 and ongoing :-(
AP Fontan, 1985
Six ablations and four cardioversions, 2004 - 2015
Syncope
Declined Fontan conversion
Meds: warfarin & dronedarone
JasmineKelly
 
Posts: 27
Joined: Mon Feb 24, 2014 9:31 pm


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