disheartened

[pinkshark]

My 25 year old partner is currently in the ICU 2.5hrs away from home for the last 35 days. He has cardiomyopathy, severe heart failure and is awaiting a transplant.

He has been on ECMO for 13 days but LVAD being considered if he has not received an offer by the end of the week meaning he’ll be off the list temporarily getting that procedure done!!

Had hoped we’d have at least received an offer by now - but not a single one has come through. Has anyone else been in this situation?? He is 6’2, approximately 106kg and O- blood group.

I just want him home to live the life a normal 25 year old should be living, finding it hard to accept this is our reality

[BeKind28-]

Hello

I am so sorry to read your post and I cannot help with answering your question I wished I could but wanted to reach out and let you know we are here some maybe able to help answer you but if not this is somewhere you can come and talk which can help

He is so young and yes you want to get on with life together please do not give up hope we have had some posts not the same maybe but where members have felt they may lose their loved ones and miracles have happened one I am thinking of just recently and I shall be hoping and wishing this for you and your Boyfriend

Please keep us updated x

[Blearyeyed]

I'm so sorry that you are all in this situation.My daughter had a mild heart attack last year and was eventually diagnosed with the same heart condition that I have at the age of 21 , but although that is not as serious as your partner's current Emergency I can appreciate the feelings you are having after experiencing just a few days in ICU with a young person that you love.

Waiting for a transplant can be a long thing but it does appear from your post that your partner is getting all the intensive care and procedures to make sure that they are well enough and prepared for when a transplant becomes available.

If I heart transplant becomes available they will still consider doing this first.

I know all this must feel so scary and up in the air for both of you and you deserve a medal for being there and helping your partner cope because the stress must be terrible for you. It feels worse because you are both young but there are many people whom have serious heart surgeries and transplants whom are very young for various reasons and then go on to have a life like other people of their own age.

You are in a long wait but it's a wait that's worth it.

When the operation and transplant have been done there will be some time for recovery but after the transplant your partner will have the chance of having the life of others of your own age and you should both have a great quality of life together. When the transplant finally happens it can be a new lease on life.

Try to keep that in mind to help give you both the positive mindset and energy to cope with the situation you are in at the moment.

Keep posting on this forum with any questions you or your partner might have about the procedures he is getting there will be other members whom will be able to help with answers about specific things whom can reassure you. When your partner's operations are done and they are in recovery keep posting as well to get tips and words of support to build up your confidence and help them have a smoother recovery.

As one of his loved ones you also need support to get through the emotions of this as well as cope physically with the day to day of visiting and caring for your partner. You are in a position were you feel very scared but probably don't feel you can talk to your partner or his family because you don't want to worry them.

But you need support and rest too.

Do speak to you family or friends to get things off your chest and make sure you give yourself some time each day to rest and relax between work and visits ,

Ask at the hospital about whether they have a carers support advisor to talk to , as his partner you have as much need to get the chance to talk to these people as his family and it can help to do that to get feelings off your chest that you don't feel you can share with anyone else , they can put your mind at rest too.

Also consider looking to see if there is a local BHF group in your area that both you and your partner could join to get support from. Or see if there is a local Carers Support group for cardiac carers or just any carers with young people because they can really help you keep positive when you go to a group as they understand what it feels like to be in your position.

We had another partner whom wrote regular posts while their husband was in hospital after having a serious condition in ICU over many months recently. They wrote most days with updates and we were always glad to hear the news and give supportive words to get her through it. The good news is that after a pretty dark time her husband is now back at home and was even out mowing the lawn a few weeks ago.

So , there is light at the end of the tunnel and hopefully we can help guidecyou to it.

Take care and please keep updating us with your progress or asking for help, hugs, Bee

[Anginalady]

Hello Pinkshark, I can't really add any more than the other replies, but just wanted to say that everyone who reads your post will be feeling for you. We post and listen to each others worries and concerns about our own health, but the pain of a loved one is just as heartbreaking.

Keep strong and never stop believing that your donor will turn up. Your partner has youth on his side, and we look forward to hearing that he's on the mend and that you're planning a great future.

Please keep us posted, we'll be thinking of you both.

[Thanksnhs]

Hi I had the same as your partner but I am a lot older, I was 61 and also blood type o when I was put on the urgent list and taken into high dependency at the Golden Jubilee to wait on a heart. On my ward at the time there was a young man of 27 with the same illness, we both got our transplants in the same month, the wait was absolutely awful and I totally understand how you feel at the moment as my family went through the same. I will be thinking about you and your boyfriend and hoping every day that he gets a suitable heart. I am four years on now and I met the young guy last week that was in my ward, he is doing really well and has a young family now. I have also met people that have had to have the same procedure your boyfriend might have to get and they have went on to have a successful transplant. If you want to ask me anything at all please send me a message and I will try to help if I can and please let me know how your boyfriend is. Take care Char xx

[Gardenview10]

Hi, I'm sorry to hear this, BUT please never give up hope. Miracles do happen, I know this because of how my husband has come through after the horrific journey after his bypass. Take care of yourself as well, you need to r fit and well xx

[Murderfan58]

I am so sorry for you both . You are both far to young to go through this . You say his blood group is O is it positive or negative. As there are less people with O negative than positive .

My dad was O negative and my son is . My dad gave 74 donations as it was given to what he called blue babies and he was asked to give blood up to 4 times a year if the stocks where low. Then he had a heart attack and wouldn't let him give blood again he was hopping mad.

I know it's hard waiting for someone to die and the family donate the deceased organs. That's why it's so important to be on the register to donate and let your family know your wishes. I have had an organ donor card since I was 18 when it was only kidneys you could donate. My late husband and all my family are on the register and carry a donor card.

I know how important it is for organ donations . This is as vital as for your partner but my late husband had a cornea graft in 1985 as he was going blind in his right due to the cornea going into a cone shape. I know it becomes with a K but can't think how to spelt it. But as the cornea doesn't have a blood supply it didn't need tissue typing . We had a false alarm before he got it done 30 stitches where used . But it saved him going blind .

Like I said it's not the same as waiting for a life saving operation.

Hopefully he will be on the list again soon and gets the operation which he badly needs. But in the meantime you must look after yourself as he will be worrying about you especially as you are so far apart.

[Deejay62]

Hi I’m sorry to hear what you and your partner is going through. Don’t give up. I have what he has and I was in the severe category, but the meds brought me back. I’m not out of the woods but I’m a lot older and will no longer consider transplant.

I don’t know what his treatment is or how bad his situation is maybe my situation at the worse wasn’t as bad as his situation is now, but I pray help will come is way as he’s far too young. There as been a lot of good advice BHF etc

If it helps continue posting and let us know how he is doing please. I will be thinking about you both.

[WoodlandLover]

Really feeling for you and your partner. Both of you are very, very brave, in the ways it impacts each of you. Don't give up hope. Things can go on and on and you think they'll never change, then all of a sudden, a breakthrough occurs and everything changes in a moment. Your life begins to rebuild again and the unbelievable miracle is set in motion. So keep on keeping on. It's hard being patient without something tangible to hold onto, but your partner is being cared for expertly meanwhile. Give yourself regular moments of doing something you enjoy, and little treats, even if it's just your favourite coffee, and try and find peace and surrender around that space, whatever it happens to be. It doesn't change what's happening but helps you get through the waiting. Loads of good wishes and luck. Eventually life will take on a whole new meaning when you do come through this. 🌼 🌸

[Quesswho]

Don't know what to say. But thinking of you and your partner. Sending all the love in the world to you both. God Bless. 💝💝

[A246]

My heart goes out to you both. I got same but I am lucky to be stable. You are in my prayers xx

[Bluey73]

So sorry to read about your situation. I can't offer any advice, but I can tell you I have read people's amazing experiences on here and I'm sure everything will work out for you both. Try to keep positive. There's lots of support out there. Wishing you & your boyfriend all the best.