Hospital update

Hi everybody, nothing was done yesterday but I think thay made up for it today! I got the neck cath done, thankfully it's all over quite sore at the mo and bruised feeling I hope I sleep on it ok, and just after that they dropped a bit of a bombshell, a meeting with the transplant co ordinator had been arranged, I think I am still in shock and will be for a while as I am still trying to get over my diagnosis which was in February, she was lovely as all the staff are here, very informative gave me some reading material not quite my usual stuff hmm!! 😱 I have a meeting with the doctors on Friday and they will tell me then if I am going on the transplant list, scary or what! I would love to here from anybody that has had a transplant, and also if there is anybody else on the list, mabe it won't come to it but if it does they have sort of prepared me for it, pulmonary function test tomorrow, and then decision time, I will let you all know the verdict on Friday xx

16 Replies

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  • Thinking of you ... 🙏🙏🙏 ... ♥️♥️♥️

  • Thanks x

  • Oh I feel for you, it's bringing it all back when you describe the tubes.

    Take it easy today & I hope tomorrows news is good.

    Sending hugs Jo ☺☺

  • Hope all goes well. Xx

  • Thanks x

  • Hope all goes well today.

  • Thanks x

  • Big news and a lot to get your head round. I have no experience of this but am her to support you.

    Glad things are over for now and the bruising goes down pretty quick!

  • Thanks, def shell shocked! Just been for lung function test, last one, as far as I know, and then I have a meeting with the doctors at 9 tomorrow, hopefully i will find out exactly what is going to happen, and then home to my wee hoose, it seems ages xx

  • So glad most of your tests are over....can't offer any help on what your going through, but just wanted to send you my support and hope that tomorrow brings good news, and that you get home really soon...chin up and keep us informed...sending hugs xx

  • Thanks, it does help being able just to write down and for people to understand, I will let you know what happens tomorrow, thanks again xx

  • huge news, thoughts with you and your family hopefully all goes well

  • Thanks, I will hopefully know by tomorrow morning what the docs have decided x

  • Thinking 💭 of you today... ♥️♥️♥️

  • Waiting on the doc just now, they are still in there weekly meeting x

  • Best of luck, Chaz. I had the same bombshell a couple of years ago. Transplant had always been talked about as a far-off if-all-else-fails strategy, then one day the transplant co-ordinator was at one of my appointments and I was being given the giant book to take home and read. You sound like you're coping better than I did, to be honest! It's so much to think about, but you're right that the Jubilee transplant co-ordinators (and cardiology staff in general) are fantastic and will definitely take the time to talk it through with you and answer any concerns you might have. There's so much information to digest and consider, which is hard to do when you've had such a shock. If it's any help to you (unlikely!) I came out of my discussions feeling like transplant is only carried out when it's definitely a better option than the alternative, that it's a horrible situation to be in, but amazing that it's offered as a possible treatment. I was borderline eligible for transplant and was able to decide whether or not to pursue it. I chose not to and my heart function did improve a bit over the following six months. I'm sure the medical professionals will be able to work with you to decide on the best approach for you. Thinking of you today x

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