Last week I had some devastating news I have a rare liver condition and now because of the AF and bradycardia I have been told that I have no other options but to have a liver transplant because the AF complicates things I'm really upset and scared I really don't know what to do.
I've got to have tons of tests then it a waiting game for one compatible, could be months after all the tests or years. But if the AF and bradycardia gets bad transplant may not be suitable as I need to be stable.
how long is the waiting list? That is the question everywhere
You can't be given a time its not like that I've got to have tons of tests then wait until one is available. There is no waiting list per say
I'm pretty sure all organ transplants have waiting lists because compatability is a high priority. A suitable donor organ needs to be available to be a match for you, so that means there's a waiting list. That's how it is in the US, don't know what country you live in. Hope your EP is aware of this so the best can be done to keep your heart stable.
News like that must take some coming to terms with. You have every right to come here and rant. I have no medical credentials to advise you, but like other members here I am listening to you.
First, sorry about the news. Have you discussed the afib situation with your liver specialist?
Jim
Yes as I stated I was told the only option I have now is liver transplant as AF and bradycardia complicates things the consultant told me this
Oh bless you Corrie, so sorry to hear you have had this news. I hope and pray that a liver will be found for you and you'll have a successful transplant.
Sending you a big hug.
Jean xxx
Well that does put things in perspective doesn’t it? We are all entitled to vent sometimes when AF gets us down but you are surely entitled to a double or triple rant ☹️ So sorry but I wish that everything comes together for you ❤️🩹
Oh Corrie, I am so very sorry to hear your news. You rant away girl and we’re always here for you. I hope the tests aren’t too gruelling and a liver becomes available soon. Sending a big hug. xxx
All the very best wishes in the world for you x
Sorry to hear this news and the trauma you are going through. Rant all you like we will listen to you. A big decision that no one would want to make, so send love and prayers to you that all will be ok. Keep strong and positive.
Vent as much as you like, I think you are entitled. So sorry you have this to deal with - life gets complicated when you have AF. Hopefully the AF will be stabilised so that when a liver becomes available you are ready. Is there an option for a living donor? I know nothing about liver disease and I probably have watched too many hospital dramas and we all know that real life is a lot tougher than the TV dramas!
Sending very best wishes and positive thoughts that you will have your transplant sooner rather than later. 😘
That's a lot to deal with. I had a year of bad health news last year and it really took its toll. I felt like every time I saw a doctor there was more bad news to get my head around. Its very tiring. And that's certainly very big news for you that has many implications, I can imagine.
Having someone to talk to/ a place to let it all out and try and make sense of it...and just have it witnessed and acknowledged...was really important for me when I was in "bad news territory". Not everyone can do that. My experience was that some friends and family just wanna look on the plus side (which doesn't always help) and others get upset and you can end up supporting them. I found I gravitated to people who could just take me as I was. This was usually people who'd been through serious health issues themselves.
I hope you have people around you who can listen/ hold things for you whatever you are going through. Ranting is part of that, for sure. Rant away!!
So sorry to hear your news. That’s a lot to come to terms with. Fingers crossed it will be ok in the end. Rant away and perhaps try to find out if there is a support group for those waiting for liver transplant as they might have some specific helpful info, but us afibbers are always here too. All the best.
Sending hugs to you. What a difficult situation you find yourself in. I hope that your AF will be taken into consideration and help you to receive a transplant sooner rather than later. X
So sorry Corrie. Sending hugs x
Oh that's tough! So sorry you're in a waiting game like this. Use the wisdom of this forum to help keep your AF under control so you can go ahead when a donor is found.
There may be a Facebook page for people with your condition, these can be very helpful too. I've got a rare genetic condition that affects the liver and the heart too and FB is very helpful.Wish you all the best 🙏
I'm on a fb page for it . X
oh dear you must be so frightened and scared. I felt for you as I know how I felt when I was told I had a brain tumour snd surgery success rate not great (🤞ok though in that way just the old heart not happy)
I do hope that all your tests are good and that a suitable donor is found for you quickly
Do let off steam on this forum as everyone is so kind and helpful snd keep reminding the medics thst you’re waiting
All the best xx.
That’s a bitter pill to swallow. You rant and we’ll listen. Xxx
Sending much love Corrie. So sorry to hear your news. I hope they find a compatible match for you very soon and get you back on the right path as quickly as possible xx
I am wondering if you might share more about what your liver condition is as I have recently had some blood tests which have indicated an issue with my liver but I am away from home at the moment so it is not going to be investigated for a while. Hopefully, it will turn out to be nothing serious but at the moment I don’t know. I wish you well and hope they find a match for you and you can get the surgery done quickly and safely. 🙏🌸
BIG hugs and healing energy for you 💗🙏🏼
Can I ask what the liver condition is? I may have Non-alcoholic fatty liver disease
That must have been devastating news and you have every reason to want a rant. Hopefully they will find a compatible liver soon and you can have the transplant.
So sorry.What a worry...Your heart drs. And others need to work together.I got them to do so with a kidney procedure years ago.
Jeepers, you're between a hard and a rock place. Hopefully your AFib will stay stable enough to get a transplant. Fingers crossed that everything goes well for you xx
Hi Corrie. Firstly, I am so sorry about your news. It is a shock, so give yourself as long as you need to let that sink in. If I was in your position, I would write down questions as they come to me, then, go back to my specialist and ask them to go through the whole scenario again.
Record it if it helps you to listen back later (- that helps me).
Ask about counselling and support for your mental health. You will need support as you navigate this news and during the wait period, and before and after the transplant.
Don't be shy about asking for anything you need because this is your time of need.
Wishing you well.
So sorry that you’re going through this. Keeping fingers crossed for you with the wait, and with the AFib/bradycardia too.
Advice needed, please!
Thanks for advice more needed!
I need advise today please.
