So today I learned my lung transplant journey has come to an end. My body has failed me whilst my mind is still breakdancing. An osteoporotic fracture in my spine is one risk too many for me to receive the gift of new lungs - it was going to be an already high risk operation due to my many complications with prior lung surgery but my bones are no longer strong enough to weather the storm of surgery or post transplant anti rejection medication.
Whilst disappointing news, the silver lining is a spiculated growth on my lung remains unchanged in size.
Now to live life to the full without the restrictions beholden to being on the transplant list. Have a lovely weekend everyone. x
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Joseph260268
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Hi I am so sorry that this is off the table for you as it must be a huge blow. Having said that the weight of the decision is off you now leaving you more free to live life whilst you still have it. No one knows how long any of us have got so never lose hope is my advice.
We had a lovely member here who was diagnosed with very severe copd and given a maximum of 3 years. She made 11. Ok at the end she was in a bad state and housebound but she still found things to enjoy and add to the quality of her life. Her mind remained as sharp as ever and she was a very dear friend to many of us.
We currently have several members who are on palliative care but I hope you aren't at that stage and have as many good years left as possible. The future is always unpredictable and anyone can be run over by a bus tomorrow! Hopefully not though. While there's life there's hope. Sending you healing vibes and hugs. xx
Disappointing for you but you do not seem surprised? I think we know our bodies well and know when they may have had enough. Thanks for posting, and for the very positive attitude to making the most of life.All the best
I was sorry to hear this news Joseph but you sound to be in good spirits and I know that others in similar situations have said that it is a relief not having to wait for 'the phone call' all the time. I hope that you enjoy whatever you choose to do. xx
So sorry for what must be a big disappointment. I hope you'll be with us for many years to come, enjoying life without the burden of recovering from very major surgery. Go for all the nice things you mean to do. Good luck.xxx
Hi Joseph I haven’t been assessed yet but always though it’s a difficult decision for anyone to make and don’t know what I’d do if I get to that stage. So the transplants not a plan for you and glad to see you’re looking on the bright side. I’d imagine lots of positives such as no waiting on tender hooks for the call, not swapping one disease for many others. .. I truly believe there’s a plan for us all and you have to live that plan the best way you can. Have a blast x
Josepth,thank for letting us know.you are one step ahead of me with the mental break dancing,though do please be careful with the acrobatics and enjoy the rest of your life to the best of your ability.Best wishes for a very long future and a reduced phone bill.
Love your attitude Joseph. Now you have accepted there will be no transplant you can relax and enjoy your life which could last for several more years. Great news the growth on your lung is unchanged in size! Keep brake dancing. 😀🦋🍀
What a great attitude you have! Yes, get out there and live. As Hypercat51 says, anyone can be run over by a bus tomorrow so we should all make the most of every day. I look forward to reading a post on here about you skydiving any day soon! Seriously, the news must have been a blow but also liberating in a strange way. I'm sorry to hear about the problem with your spine as that must be a barrier to climbing Everest but I'm sure there will be smaller, more personal mountains you can aim for. My very best wishes to you. xx Moy
HinJoseph. Sorry that a transplant is not to be. It must have really knocked you sideways. As others have said, sometimes we just have to really make the most of what we have and try to enjoy life as best we can. Good luck to you and I hope you have many more years of posting on here. John
Sorry to hear your news Joseph, but maybe good that you are not having this major op with all the complications you have. Enjoy each day with the same enthusiasm that has got you this far x
What a brilliant attitude you have!You seem to deal with whatever life throws at you & get on with it.Truly amazing.Live for the moment as you say & squeeze every ounce of enjoyment out of it. Wish you all the best! Linda🤗
Disappointing that you have been taken off the transplant list, but great that you're looking at the advantages too - love your positivity. Enjoy your life without the restrictions of being on the list x
I can only echo what others have said. It’s a huge disappointment but maybe a slight relief? You can now stop worrying about all the complications that go with such major surgery but it means you’ll have to come to terms with what you’re left with and resolve to get the most out of your life. Easier said than done but I suspect you’re the boy to do it!
Thank you for posting this and I am sorry that the transplant option was not for you. Enjoy the new found time and energy that you can spend as you want.
I'm sure your attitude to life will overcome the disappointment of being denied a transplant. Wishing you all the very best for your future Joseph, go for it xxx
I am sorry your lung transplant is not going to happen. I hope you will be able to live your life to the full. I wish you well on the rest of your journey, sending love. xxx
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