New to this

Hello, I'm very new to writing on forums but here goes... Well I'm 45 and was diagnosed with alpha 1 emphersyma about 8 years ago and had to leave work 4 years ago as my job requires meet to be able to run !! Since leaving work it was always advised that I would require heart and double lung transplant. However recently I was also diagnosed with Thyriod cancer and have since under gone treatment and surgery for that. I'm 12 months in remission but have now been told that NICE guidelines are cancer free for 5 years but transplant team say I've not got 5 years in my lungs!! I write as I've just come out of hospital after chest infection and been placed on o2 to protect my other organs. That's me. I've enjoyed reading the support and advice that is given on here.

Thank you for reading 😀

8 Replies

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  • Welcome to you Richie, enjoy the forum. You have a lot going on so are in the right place for lots of support. Xxxx

  • Pleased to meet you Richie, and sorry to hear your problems but everyone here is so supportive xx

  • Good morning Richie, and a very warm welcome to the group. You seem to have a lot to deal with at the moment but I hope that you will benefit from joining us. Take care. XXX

  • Welcome Richie ☺

  • A very warm welcome to you Richie. I am so sorry for your struggles. Please know we are here for you.

    Love cx

  • Welcome richie you have joined a great community. Please keep posting when you need advise or just to chat take care

  • Welcome Richie. Sorry to hear of your. Alpha1 and copd not a good combination. The way I cope is to look on the bright side in the hope of a cure just round the corner as being 66 too old for a transplant.

  • Richiebalpha1

    Hi you seem to be hitting the same problem I've had. You have had a cancer but all treatments for emphysema require you to be cancer free for 5 years. I have tried lung transplants, lung reduction surgery, lung valves/coils and stem cell treatments all the same response. You need to stay fit, exercise as much as you are able (Do not overdo it) eat sensibly. Pace yourself for the majority of tasks don't expect too much from your body. It's a pain but likely the only way, any other research you may do could be a waste of your time and effort. Do not go near any clinic that tells you stem cell treatments are fine in your condition, too little is known of the long term effects.

    I know this is not what you want to hear but unfortunately there is no magic bullet that will change the situation. Live life & enjoy.

    IKeith

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