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damaged after transplant - Carers UK Forum

damaged after transplant

For issues related to specific conditions and disabilities.
hi i wasnt sure were to post this as my hubby has a whole different range of disabilities,having had a heart transplant due to acute heart failure,this was caused by a genetic condition,he was seriously ill after and recovery was terrible,the result was a damaged donor heart which is right side heart failure and severe triscupid valve,end stage kidney failure,he is on dialysis 3 times a week,possible lung damage and severe depression,i was wondering if anyone else was caring for a loved one in a similar situation or dealing with life after transplant thanks x
Hi Sweetiex,
Not dealing with a transplant patient, but an NHS c*ck up caused hubby to be in a wheelchair. Yes, he has syringomyelia of the spine (see my post in the approp section here), BUT, it was the lack of scans years before, when he had his motorbike accident, which caused it to remain undetected for many years. Accident happened when he was in his late teens and his condition was undetected until he was 35, by then the syrinx had grown all round his spinal column from top to bottom and was completely inoperable. Earlier detection by scans would have meant, simple operation to drain it and cut it away, before it got too large.
Hubby would maybe have been left with a limp, but certainly not in a bl**dy wheelchair at 35.

I understand your thoughts on the 'mess ups' which we are left to cope with as best we can.

Love and hugs.
Fran xxx
oh fran what a shame a young man like my husband too,thats terrible very upsetting,ours wasnt to do with the nhs,at least i hope not,it all began when oh was complaining of feeling sick and a bloated stomach,gp kept turning him away accusing him of boozing more or less,he doesnt drink,after 3 months he wasnt peeing and was very thirsty,blood in the urine breathing dodgey leaning to one side,gp sent him to hospital at last,body was shutting down,very seriously ill and his heart was in a bad way,kidneys came back working but blood clot in his lung,didnt find that out till he was transferred to the royal,a week later shocking,he didnt want a transplant too scared,they kept him on tablets but he was very frail,had to be put on a balloon pump in the end,his heart wasnt functioning safely,to have a transplant and survive it your body has to be strong,physically and mentally,he had neither,hence the state of him now,was anyone to blame i really dont know x
Sweetiex, do you go onto Facebook, there is a support group for families where a loved on has had a transplant, or is waiting for one.
My husband had a corneal transplant in 1994, very successful thankfully,and we have always been grateful to the family who agreed that their loved one's corneas could be used.
My son, aged 21, died suddenly,in 2009,and we offered his organs for transplantation, but due to infection,they were unable to be used.It broke my heart even more that they took his eyes and heart valves, but were unable to use them.
I have that found talking to other people, both donors and recipients, helps me come to terms with things over time.Learning about other families helps.
On Facebook is where I find the most specific support for transplants.
Good luck. It must be a very frightening time for you both.
hi lazy daisy do i go on facebook Image im always on it love it,got friends on it from the cardiomyopathy association,these are people who have dilated cardiomyopathy or carers looking after loved ones with who have it,this is what my hubby had,i catch up with them on facebook now mostly,what is the name of the organisation?as i tend to watch who i join with,you have to watch with facebook,lots of dodgeyness going on and viruses,yeah its very frightening i never know whats going to happen next with him,he has caused me and his family a lot of worry,this genetic thing has more or less destoyed my hubby,he is not the same guy and its an awful shame,i need to stop writing now getting too upset,got to be strong have to be strong x
Hi, My Hubby has dilated cardiomyopathy which has left him with end stage heart failure - we did go through the transplant route but eventually (after a number of years and reviews every 6 months) it was decided that he was not a candidate for transplant as he had high pulmonary pressure. We were pretty much written off, which left my husband very depressed, housebound and on oxygen waiting to die. Eventually we were offered a CRT device, which has helped and he is more mobile (although still limited) and does not use his oxygen as much. He has found this very difficult as he is only 45.
Not quite the same situation as you, but we have never met anyone else in our situation - most things seem to be geared up for older people which adds to the isolation, so I know how you feel.
Be strong and keep going.

Deborah
x