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I have stage 4 emphysema I'm 40 & not ready to give in but have been told I need to go on the transp

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georgina1976
georgina1976

I have stage 4 emphysema I'm 40 & not ready to give in but have been told I need to go on the transpKant list I'm terrified

2 likes, 11 replies

11 Replies

  • leanne73643
    leanne73643 georgina1976

    Posted

    Georgina that is hard..you are far too young ...are you a smoker?? You on medication for it?

    I feel so sorry for you ..my dad has copd and 61..smokes and won't give up his choice that I have to respect.

    My father in laws step dad has it and has for about 20 yrs but he gave up smoking about 30yrs ago he's on oxygen 24/7 now

    Take care

    • georgina1976
      georgina1976 leanne73643

      Posted

      I have alfa1 gene I did smoke but gave up 5 years ago when diagnosed I'm on oxygen & have had valves put into my lungs to try & reduce volume but didn't work just don't know what to expect my fev1 is 24%

    • leanne73643
      leanne73643 georgina1976

      Posted

      That's such a shame...you always think these conditions are for older people...is fev1 24% lung function??

      Leanne

    • aitarg35939
      aitarg35939 leanne73643

      Posted

      Yes, FEV1 is one aspect of pulmonary function, and she's at 24%, down from the ideal of 100% so it's bad. If I try to explain FEV, I might screw up. You can Google it if you wish or wait for someone more knowledgeable to provide a coherent explanation.

    • aitarg35939
      aitarg35939 georgina1976

      Posted

      Georgina, I am so sorry. I don't know what else to say except that you're in my prayers

  • shannon63557
    shannon63557 georgina1976

    Posted

    I am so sorry for your diagnosis.  I am presently waiting to be put on the transplant list and curse my fate all the time. But unlike you I was a smoker so I feel more embarassement speaking of receiving a new set of lungs. Be strong, and have loved ones around you. Ask questions until you are out of breath LOL and then ask some more. I am 56 and have been riding this wave for 18 months with testing. Hopefully I will  receive news that i am a candidate. I would be very pleased with that as i have deteriorated so much over the last 18 months. Stay strong and read this information/ encouragement panel for all their views and prayers. I haven't written much or commented but the information is so helpful.

    Be well to all of you and i hope you have a strong base to lean on. I will extend a prayer for you. My Dad (who also had COPD) would always say " Don't let the b*****s get you down'.  He was a fan of old war movies but had the right idea. I hope my language isn't offensive.. I am curious as to where you live? I am in Canada.

    Moderator comment: I have edited this post due to the swearing. These are open forums so as per the T&Cs please do not use offensive language in posts otherwise they may be deleted.

  • david65307
    david65307 georgina1976

    Posted

    Hi, my name is David and I know what your going through. I'm on the transplant list and scared as hell however I was saved even got baptized in my bathtub cause the day we went to the church as soon as we got there I couldn't get out of my truck because I could not breath. I was a evil sob used drugs lied and stole anything not nailed down. But the devil tried to stop me from being baptized so got baptized in the bathtub, since then I've been getting better and I believe it's the power of prayer. Turn to God it will help you, I promise. 

  • louize
    louize georgina1976

    Posted

    My name is Louize and i have just come across this site. I am an Alpha 1 with a fev1 @ 24%. I spent 2 days @ Harefield to discuss a transplant. I will be giving it great consideration and i'm there again in March 18. It's a tough call but the staff are amazing. How are you today?

    • georgina1976
      georgina1976 louize

      Posted

      Hi louize I’ve only just read your message as haven’t been on here for a while as my condition is now having a bigger impact on life I have been refused transplant firstly as I was under weight & although eating everything possible plus 6 bottles of ensure & fortisips ‘ high calorie supplement drinks ‘ I’ve had minimal results & still need to add nearly a stone in weight, then after repeatedly bruising bones & pulling muscles , so I thought, I had a dexa bone scan & have severe osteoporosis further making the chances of getting on the list extremely unlikely so outlook not great but I refuse to give in and am determined to remain positive & hopeful as the alternative isn’t how I want to view my future 

      I really hope your transplant comes soon for you & wish you the very best in your journey x

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