Thank you

Thank you to everyone who responded to my post. I should of explained and introduced myself better yesterday evening. I have end stage emphysema or stage 4 as it is also known. My consultant is in the process of referring me to meet the transplant team here in Newcastle England. I've never really understood or bothered to find out what FEV1 19% so on is. So thank you for all the responses to my post. I will take a look at the YouTube one and hopefully will understand more by the time it's finished lol. I'm also new to computers , so bare with me . Thanks All.

16 Replies

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  • Hi Jacko

    I'm up if you need someone to chat with. Some of us are from USA and other places. It's only 10:00

    P.m. here. So how long have you had copd? I've had it for about 7 yrs. now.

    Rubyxx 😊

  • Hi ruby ,sorry that took a while to respond. I'm really struggling with this computer business. I was diagnosed around 7 years ago too.

  • Hi ruby

    Got to go for now . But would love to catch up another time.

  • Try to get some rest. There are people on the site also waiting for transplants. I'm sure they will reply to you.😊

    You will learn alot here, and

    everything won't seem so scarey. Rest easy...

    Rubyxx 😊 😊

  • Hi Jacko the hospital in Newcastle is fantastic your in very safe hands

  • Nice to meet you Jacko 😊 hope you get to grips with the computer it's such a great learning tool, I have severe emphysema( Alpha1) and I'm on oxygen, huff xxx

  • What does alpha 1 mean?

  • Oops sorry only just seen your question! Alpha1 is a protein that protects your organs( including skin,)because our bodies don't make it or it gets stuck in your liver you can develop emphysema or liver disease or both.

    It's a genetic condition and you have different pheno types, hope that helps 😊 huff xxx

  • Hi & welcome Jacko,good luck with your meeting the transplant team,Im sure they will be giving you plenty of information,do let us know how you get on xxx

  • Thanks Wendell.

    I don't have a date yet, I'm in the process of finishing the pulmonary exercise course they expect to be done before my consultant can refer me. But as soon as I hear ,I will let you no. I'm so scared.

  • Hello Jacko, you are very welcome to join us. You will probably get the chance to chat to the others on the forum in the same position as yourself. There's a few who are waiting for a transplant.

    Take care 🌻

  • Hi jacko and welcome. Hope things go well for you. Take care xxxx

  • Hello!! You've some way to go, yet: stage 5 is "end stage" -- and if you've been referred to Newcastle, then you aren't at "the end"... The two criteria for a referral for a transplant is that you need to be "bad enough to need it, but good enough to survive it".

    Keep up with the exercise, eat well, be positive and good luck with the transplant. A friend of mine had his done in Newcastle seven weeks ago and he's doing brilliantly. Good luck!!

    Catnip

  • I feel great at the moment ,no hospital admissions in over a year. I go to my regular 6 month check up, and my consultant tells me it's to risky to wait any longer. He Carnt understand why my previous consultant hasn't referred to Newcastle already for lung transplant. So I've being having all sorts of tests done, I'm not far off finishing the pulmonary rehabilitation classes that's expected of you. And have got a body mass of 21 now. He will be sending the referral off soon. He told me he was very concerned for me and that we need to get moving, but did say they might say I'm to sick. Or that I'm ok for now but I'll be put on the list but not as first priority. Or they will want to put me on as urgent asap. I'm hoping I will be ok for now, to be honest I'm terrified. That's wonderful news for your friend. I hope they continue to do well. Do you no anyone who has lived for a very long time with transplanted lungs?

  • It's good to know that you are feeling great, and I think that the pulmonary rehab has probably contributed to that. It is crucially important to keep up the exercise regime once PR is finished, for your own sake!! It will also keep you fitter and ready for that transplant!

    I can understand that you feel terrified: it is one hell of a decision to make. My friend and his wife and family said all their goodbyes before he went to theatre... "just in case". I hadn't the guts to make the decision, and just keep going with the lungs I have!

    My friend has checked out survival rates (understandably): we both know one man who had a transplant six years ago but my friend (Bill) has heard of a lady in Sheffield who had one 20 years ago -- which is fabulous. He's trying to get in contact with her. He did say that ten years isn't unusual, either.

    Be happy -- be courageous, and keep up the exercise!

    Catnip

  • Hello - people on here seem very nice and I have had good advice. Take care and stay well.

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