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British Heart Foundation
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Update /feeling sad and lost

Hi everyone, I got the news last week that I kind of expected but always hoping it might not happen, once again I seen my cardiologist, I have seen him so many times we are on first name terms 😀the results were in after my second cpet test, there were technical issues with the first one so we were hoping the bad result wasn't quite as bad as it looked, it wasn't much better, so with no more tests to be done, I think I have used up the NHS Scotland's budget for the year! He just sat and said, there is nothing else we can do, he looked as upset as me, he then said he was taking my case to his team to recommend me being placed on the transplant list 💔 well this duly happened on Friday, I have spoke to the surgeon and the anesthetist, both such lovely people and this week I will see the coordinator and other people, as you can probs tell, I am in shock, sorry for the long post, I feel really lost like nobody understands, I am wondering if anyone else here is on the list or has had a transplant, I would love to speak to someone going through the same thing, can I also say to everyone please please do not ignore any systems, mabe it's not the fact you are, getting auld, stressed out or even a bad hangover, get it checked, if I had I probably wouldn't be in this position today, char xx

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Hi Char,

I am so sorry to hear your devastating news and send you love and hugs through the airwaves. I do hope you find the help and reassurance you need, I’m sure someone will come up trumps on this forum.

Take care and try and stay strong.

With love,

Dory xxx❤️

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Thank you for your support, still trying to get my head round it, it's not even been two years since I found out I had a heart problem, but as I said I had been ignoring symptoms for a long time, not that I new what cardiomyopathy and heart failure were! , I certainly know now! I hope you are keeping ok just now, tc char xx

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Even when we don't ignore the symptoms it's a battle to be taken seriously ☹️

Wishing you well very soon x

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I’m fine thank you Char, can’t believe it is almost a year since my op.

I’ll be thinking of you, keep us posted. xxx

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Hi Char

Transplants are amazing and I do hope that you find a donor soon.

A friend of mine is having a kidney transplant today so I will be thinking of you both.

Ann

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Thank you, I hope it goes well for your friend, things might be a bit quicker to receive one now that they are changing the laws to opt out, my cardiologist thinks that should make a big difference, it will still take a while, I think! Xx

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One thing I have done is to download the NHS organ donation card app as my screensaver when my phone is locked. Then if anything happens to me there is no time lost over any possible donations.

Ann

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If only everyone would do that, none of my friends or family are on the donor list even knowing what a difference it would make to a lot of people, including me! Xx

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I always had a card but I was directed to the phone screensaver when I renewed my road fund licence. I do hope that your wait is not too long. Xx

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Check out Harefield Hamsters. They are a group of people who have had transplants - some over 35 years ago. The transplant process is now mature and not experimental!

Niki Lauda, the former racing driver, has had both kidney and lung transplants. He is currently recovering from the latter and hopes to be back on the pit lane next season although I would not be surprised if he turned up at this season's last race.

Stay positive and keep as fit as you can.

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Thank you for your upbeat reply, it's just such a shock even though I knew it could be on the cards, people seem to think because I look ok I am, oh I wish! my mum is 89(I haven't told her yet) I have no sisters or daughters I always feel they would no what to say or do, my older son has not even answered my message that I sent to let him know, I live alone, so I can wallow in my own self pity lol, sorry for whingeing just having a very bad day, will pull up socks tomorrow and get on with it xx

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Nobody would begrudge you a bit of wallowing, Char, it's a horrible situation to find yourself in. When I told my (very caring!) parents that a heart transplant might be necessary for me, they immediately changed the subject and never mentioned it again. It's so hard for everyone to process and if your heart condition still feels new to you (who have lived through it and been to all the appointments) then it's going to feel even more new and surreal to your son. I hope some of your nearest and dearest do step up and offer you the support you need soon, but never forget how many supporters you have around here too, all rooting for you and with a sympathetic ear should you ever need it. Lots of love, as always xx

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Thanks again, as they say tomorrow is another day! Mabe my son will phone, he is 40 so not exactly a child, my younger son is 37 and dosn't really no what to do or say, funny enough I am not too scared about the op at the moment mabe it will hit me in the future, it's if they can get a donor in time, xx

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Hi Chad so sorry to hear your news. I think you live in Glasgow is that right? I live in Ayr would be happy to meet up in Glasgow for a chat if you are up to it. Hope all goes well. Helen

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Hi chad me too. I’m in Lanarkshire. You let your socks hang at your ankles as long as you need. As hard as it is try and stay positive my friend❤️

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Sorry don’t know why post is repeated. I can be so silly at times

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Hi chad me too. I’m in Lanarkshire. You let your socks hang at your ankles as long as you need. As hard as it is try and stay positive my friend❤️

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Hi chad me too. I’m in Lanarkshire. You let your socks hang at your ankles as long as you need. As hard as it is try and stay positive my friend❤️

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Add me to that list too, Char! x

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It would be good for us Scottish hearties to have a blether 👍😀xx

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Absolutely. I don’t know know how to pm you so you all make arrangements and I’ll tag along. I’m versatile❤️

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Thank you also I would like to meet up, I live in Johnstone, renfrewshire, handy for Glasgow and Ayrshire, if you could pm me when you are free and mabe we could arrange something xx

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Any news on the catch up yet. Hope you’ve pulled your socks up by now. Lol❤️shiona

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Hi and many thanks, I stay in Johnstone, so not far away, handy for the jubilee lol 💔and yes it would be lovely to meet, as I stay near the station on the Ayrshire line I am quite partial to a wee jaunt doon the coast, if you could pm when you are free we could make arrangements thanks again char xx

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Hello Chaz

You under the Golden Jubilee ??

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Hi yes, what a wonderful hospital it is, they have been brilliant throughout, from the tea ladies to the surgeon I can't thank them enough, so thankful for the NHS, xx

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Hi Chaz,

You under the Golden Jubilee ??

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Hi Chaz

Are you under the Golden Jubilee ??

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So sorry for your news. I am a retired nurse here in the US, I have had 2 patients that I am still friends with who have had heart transplants and are doing great. One had his at age 38 and he is now around 42, the other had hers at age 50 and she is probably 55 now. Their lives are normal, both working, doing great. Try and be hopeful. I was their nurse in the “ waiting for the transplant” phase. That was the hardest. They had to have IV medication to keep their hearts going until they got the phone call that a heart was available. Hoping the same for you💜

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I met the transplant coordinator for the Golden Jubilee at a Heart Failure seminar, and she was brilliant with explanations. Dr Hennigan was one of the consultants cardiologists for my interventions. If Lura Dropstich comes along I think she knows a quite a bit about the Jubilee.

Your in good hands take care

Frank W

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Sorry seen now Laura has been along, I don't have a stutter it just said server error and posted 3 times

regards

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Good luck! We are all thinking of you.

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My husband had a heart transplant at 61 for a dilated cardiomyopathy 6 years ago. It was an intensely stressful and frightening time, and I do feel for you. We knew no one who had had a heart transplant and it seemed a terrifying unknown. The hospital was very supportive and we actually have very good memories of the care and kindness he was shown. We were both desperate for him to get on the list and yet very scared of the prospect of transplant, but in fact it both saved and absolutely transformed his life and we are so thankful for it. In the first weeks he had strong immunosuppression and frequent biopsies, but it all calmed down quite quickly. I had more pain and sickness with my AVR than he did!

We feel so fortunate and are so grateful to his donor and family: we are on the organ donor registry to give everything possible. He goes back to Papworth twice a year for a routine visit (we live 70 miles away) and it is always a pleasure to see everybody - we owe them so much.

Re your worry about waiting, it's very important to keep your transplant coordinator up to date with any worsening of your condition - there's a lot they can do for you as an in- patient to keep you stable for transplant.

Do PM me if you have any questions.

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I'm so sorry.

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Sorry to read your bad news .

I hope you find the reassurance u need although not in anyway the same but have just undergone a aortic valve replacement for the second time which resulted in temporary heart block and being attached to a pacemaker I was on a complete emotional rollercoaster and I don’t think that anyone can re assure you unless they are in the same situation.

You will be in my thoughts,

take care.

Sam.x

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Sorry to hear that you are feeling lost, it must be a worrying and difficult time for you hopefully you will get thd transplant soon. Take care and stay strong # hugs x

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atrailoftwohearts.com/

This chap has had a transplant and is doing amazing things now. He seems a lovely man he's on Facebook maybe you could message him as he's been through it, I'm sure he'd help you to feel more reassured.

Good luck x

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Sorry you have had such bad news, I’m sure there will be people who can give you some advice or just share similar problems, hugs, Tracey x

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Hello Char,

Well, this is a tough sitiuation to face for you. I was beginning to think this might have been my only option at one time and because quality of life was getting so poor over several years while the specialist applied tick box mentality, I gradually became resigned and resolved that come what may it was better to go ahead and have a very risky procedure whatever the odds rather than become a complete waste of space to myself and family with a prolonged but same end result. Fortunately mine did not go as far as a transplant but neverthe less a high risk op; deciding to be in control of my own fate made getting through what lay ahead so much easier. This sounds a bit harsh I know but after the stark situation you have been given take time to think it through and dealing with it becomes easier it by bit. You will see that while it looks as if you have a lot to lose actually you have so much more to gain if / when all goes well. Clearly you have developed a good rapport with your cardiologist and building the same with the surgical team - you have to place your trust in them and yes to God if you have faith; once you have done that a lot of the fear will depart and you will be all the stronger to deal with all matters. Do make sure to deal with things beforehand - just in case - then you are able to focus on coming through it all and recovering. I wish you strength and fortitude and much support I am sure from family and friends. So many of us out there are wishing you well!

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Hi Chaz

You have all my best wishes and I know I cannot imagine how you feel at the moment. As others have said, staying positive will be very important. Part of that will be your attitude of mind and building up a group of people you can talk to, even if some close to you have shut down their feelings over your problem. It must be really hurtful to you when that happened and no doubt it will bubble to the surface. However, please don't miss any opportunity to rebuild those damaged relationships.

Good luck, I hope things change for you soon. Keep posting, I'm sure you'll get support here.

Henry

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So good of you to think of others. I so feel for you! All I can say is I am glad I am alive in 2018 and not 1978 when my dad, poorly treated for a heart problem, died. Nowadays medical technology is so much better and more sophisticated.

I wish you well and blessings that all will be well for you.

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Thoughts are with you Chaz, not in your position but I am sure we all send you our best wishes. Try and stay positive. 😜⚓️🍺

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Hi Chaz I’m sorry you have had such awful news and can’t imagine what you are going through right now, I hope you get a transplant soon. I just wanted you to know my friend’s partner had a transplant just after Christmas he’s early 30’s and his was done due to infection he is doing really well, he has a little girl of 3 and is so grateful for a second chance of life. I wish you well x

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Hi Chaz

You are obviously in the best medical hands so all you can do is go with it.

Take care

C.

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So sorry to hear your news. Its quite a shock even if you were half expecting it. I hope someone on here can help you who has been or are going through this and can talk to you. Maybe speak to transplant team they must have ecounselling as part of the decision of going on the list. I am thinking of you, and you are strong enough to get through this. Remember tiny little steps. Xx

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Keep positive. xx

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Sorry have no practical help to offer but just wanted to offer you love and kisses and hope that you find a donor soon and remember we are all there for you. Keep faith xxx

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Try and keep calm. Awful luck you've had but these days surgeons are very good. I watched a programme on tv recently all about heart transplants the surgeons wereabsolutelyexcellent the guy got a new heart and my goodness he was amazing he had a new lease of life. Keep your chin up. This programme was on for an hr.

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Hallo, Im so sorry to read of your awful news. 2 weeks ago I went to the Cardiomyopathy UK annual conference in Liverpool.

There is a Cardiomyopathy UK support group in Glasgow run by Stephen Kirkham. His email is: sg.kirkham@btinternet.com

You can also call the support group organiser Jo Franks on 01494 791 224. She's very helpful. Also the helpline is 0800 018 1024 Mon to Fri 8.30 to 4.30.

And the live chat cardiomyopathyuk.org Mon to Fri 8.30 to 4.30.

Best of luck. Clare

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