I posted a few months ago regarding support for loved ones who are on the list for transplant. A month ago i lost my brave husband due to complications with fluid.
I just wanted to push the point of fighting for the best treatment you can. My husband did not receive this and i urge any loved one with an ill relative or you are a patient yourself to push and push for the best treatment and if not push to find where else you can get it . If you are not happy with something tell as many people as you can, fight !!!
My husband was 6 weeks onto the transplant list and 40yrs old and was waiting for a chance to have a second go at life. We were ignored and we both paid the ultimate price
Life is so cruel but he did everything he was told to but it just wasn't meant to be.
Take care
Written by
Mitchell1980
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I have been pushing for a year now, was not happy with a few things on my last visit to hospital but then i saw a different consultant who obviously did not read my medical notes. 🙄.
Can get tiring at times and doesnt help that i have other health issues besides end stage f4 fibrosis. Thank you for your post.. you take care.
I am so sorry to hear your news Michell, it is an unfortunate fact in the transplant lottery that some people just do not make it, even when the obvious hard stuff of getting on the list has been achieved. Some of us get on the list, wait 18 months for a suitable organ and then the operation is aborted due to a major haemorrhage. That ordinarily and according to my hepatologist should have been “ game over” . 18 morning months later I am still here and later today will be flying off to Singapore to tick a few more places off my bucket list before the grim reaper finally catches up with me. I am assume no you are in the UK, and cannot sing the praises of the staff I dealt with highly enough with the exception of one. He was arrogant, stand offish, uncaring the full Monty. But I am from a hard(ish) background and my vocabulary is sometimes described as fruitful. This person got the full brunt of an all out verbal attack. Some of the words he would have had to look up, but was left in no doubt as to the venom and the ferocity of the way they were used. He was even told in a non friendly manner the “respect is earned, not given for granted”. Needless to say he played no further part in my care other than whilst lying on the ward after the aborted transplant he came to do his rounds. He attempted to be civil with me, but I just reminded him who I was and he scuttled out of the room.
I totally agree that you have to put yourself first and make whatever reasonable demands you can regarding treatment for something that could take your life.
If you feel this falls on deaf ears, you are always entitled to obtain a second opinion at a different transplant centre. The issue here is often geographical as there are only 7 I think in the country.
When I had gone past 6 months on the list at The Free, I went to see someone at Kings, who quickly informed me that it would be unlikely to happen any quicker for me there, but the choice was mine. I opted to stay, and although the result was not ideal I have no regrets.
If you feel that your Husband was not treated correctly, speak to someone, and see if there is anything that could be done to ensure it doesn’t happen to somebody else.
Once again my deepest condolences, and hopefully this forum can help you in some small way.
Sorry for your loss. Prior to my first transplant I also has massive ascites and was being drained every ten days. Addenbrookes has the top liver tx team in the UK, also the top surgeon who does multi visceral (the only one that dose in England) but I have had serious issues not because of my team, but my angel donare who had blood clots that did not manifest till after surgery. I’m back on the list again Alas, with liver disease, anything can happen. Everyone’s body is different I hope you find comfort and wish your partner safe passage home.
Thoughts with you Mitchell at this really devastating time. It always terrifies me that I could end up in the position you are in now. I make sure to chase and gently push to get appointment, tests and such like when I feel hubbies care is 'going off'. Thankfully he is stable at present but I want that peace of mind that medics are on the ball and he is being monitored properly
So very very sorry to hear that your husband lost his fight for life and you have been left alone to cope at such a young age. We are retired and my husband is unlikely to be even considered for transplant, we just want him to stay as well as possible, but I do agree that you have to follow up on everything these days and try to understand the facts relating to your own case, because the NHS is under such immense pressure....with some fantastic staff working hard against the tide. Take care and remember the good times. JX
Deepest condolences to you at this time.. I’m new to this just reading posts for the first time..husband decompenssted cirrhosis and afraid to think what’s ahead of me..keeping you in my prayers x
My thoughts are with you. Like the lady above, my husband is newly diagnosed with Cirrhosis and have no idea what the future holds. Thanking you for your advice and so sorry for your loss xx
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