Heart Transplant

[2beats-or-not-2beats]

Has anyone else with Cardiomyopathy been told that their only option left is a Heart Transplant?

Just received this info from Hospital 4 days ago and it's left me feeling so numb.

Is anyone else going through this.

[meadfoot]

Sorry to hear your news is stark and you feel so shocked as anyone would be. Is there anyone at your hospital giving emotional support i would have thought there would be. Have you considered speaking with BHF direct to see if they can offer you support and guidance. Please ensure you get emotional support and any medical support available dont struggle with this alone. Sending a big hug.

[2beats-or-not-2beats in reply to meadfoot]

Thank you.First time i've seen a consultant in 2 years and this was dropped on me out of the blue.

Spoke with my own GP this morning and he knows nothing about it and looked through the previous consultant letters and said there was nothing to indicate they were going to suggest heart transplant.

Now have to wait until my own GP gets the notes from the consultant at the hospital before he can give me any answers.

You have shown more care and understanding by responding to my question and thank you very much for having done so.

[meadfoot in reply to 2beats-or-not-2beats]

I am at a loss why communication has been so bad between your medics and why you havent had better explanations. Why don't medics understand the stress and trauma people go through and how their actions or lack of contribute to it all. It makes me so cross for you. Good luck and best wishes. Thinking of you. Take care.

[Hidden]

I am waiting on transplant but for another reason. The news was definitely difficult to hear and get used to. And there are still occasionally days I feel overwhelmed with it. But I have tried to remain positive and to keep doing all the things I enjoy, though at a much slower rate. For me it's important to keep my mind active. That means less time to dwell on the enormity of the situation. Among other things I have decided to learn to draw and paint (badly!) but it keeps me occupied on the days I don't have a lot of energy for other things. Maybe there is something that will suit you. Stay positive it's a challenging road but you will get there.

[meadfoot in reply to Hidden]

Sorry you too are having big health issues to contend with. Good luck and enjoy the things which are helping you cope. Best wishes.

[Shar28]

Hello. Sorry to hear your news, it must be so hard to deal with. I can’t give you any direct help but have you seen the Cardiomyopathy UK website? They have a nurse helpline and local support groups too. Perhaps they can help? Here’s the link

cardiomyopathy.org

All the best to you and your loved ones. X

[2beats-or-not-2beats in reply to Shar28]

Thank you, have never even been informed by my GP or consultant about any of these sites.

[ahk59]

Hi thereI so understand when i was first diagnosed 6 yrs ago i was sent for all sorts of tests to see if heart transplant was needed it filled me with so much dread.After all the tests i was told i wasnt bad enough for heart transplant.6 years on i feel back to my old self albeit i om on various heart drugs.I just kept walking small distance each day to make my heart stronger and it seems to have worked.Hopefully you will get some encouraging news also.Take care

[Ads568]

Hi 2beats-or-not-2beats,

Everyone's situation is different, so it's always difficult to compare your situation with anyone else's. I had dilated cardiomyopathy; and mild, then severe, then end stage heart failure; and I was then extremely luck to receive a heart transplant. I went through the various interventions one by one, then finally transplant was the only option left, it sounds like this has come as a complete bombshell to you, and I can understand how frustrating and frightening all this is. Once I got to the specialist hospital to be assessed for transplant, the transplant team were always available and I could ask them absolutely anything, I'd like to think this would be available to you too.

Are you still in hospital? If so, maybe you could ask to speak to your consultant again and get some clarity. If not, could you ring the consultant's secretary and ask her to slot you in for a phone call from him/her? Did your consultant say which transplant centre he/she was considering referring you to? You might be able to contact them and see if they have any general transplant information that would help you, or if they know anything about your referral? Although my GP was always supportive, they weren't really in the loop regarding the transplant. It's really not fair for you to be left with no information.

My personal way of dealing with all the things that have occurred to me is to arm myself with as much information as I possibly can (being careful to only go to reputable websites!), that helps me to face things head on.

Best wishes and good luck.

Adsterp

[Thanksnhs]

Hi and good morning, I had what they thought was dilated cardiomyopathy it turned out to be arythmogenic cardiomyopathy, I say had because I got a transplant last July in the golden jubilee in Glasgow, I waited two years on the routine list, it was awful at times, my hospital has its own psychiatrist which I should have spoken to more as he was great, I eventually got admitted on the urgent list which being in the middle of the pandemic meant no visitor's at all, thank goodness for the amazing wonderful staff, I was very fortunate I only waited three weeks for my heart, I thank my donor and family every day, another three weeks and I was home, I stay myself so it was quite daunting and at the time I wondered why I bothered with it as I felt just as bad, wind the clock on 9 months, what a difference, I still have side effects from the meds but they are reducing them all the time, clinic visits are every six weeks and last Fri after my echo my consultant declared it was the best heart he has ever seen, I am so pleased now, it is a slow process but for me I already I have a much better life than I ever had, it was caused by a faulty gene so I have struggled most of my life but didn't find out till I was 58 I am now 62, if there is anything you want to ask about the care pre and post transplant please message I know exactly how you feel char

[WardijaWardija]

Yes, that must have been a massive shock for you! so sorry.Have you thought about getting a second opinion, or at the very least, an explanation of exactly why this major surgery has been proposed. I have Cardiomyopathy and 3 stents. I'm managed on a cocktail of the usual medications and am now stable heart wize. My consultant told me if my condition deteriorates in future years, there was always the possibility of an ICD, never mentioned anything about a possible transplant.Maybe you have something else going on with your heart apart from the Cardiomyopathy?

But don't just accept what you are being told without any background evidence. Good luck.

[porsche]

Hello beatsI’m nearly 6 yrs post heart transplant, I remember that numb feeling so well......no hope & hope delivered in one sentence!

However, transplant for me has been nothing short of a miracle, before I couldn’t walk far, pick up my baby grandchildren etc after I’d recovered I live a ‘normal’ life.

I’m happy to answer any questions you have.

Annette