This awful illness

After reading all this great information on this site about Lung valves and the new coil lung inserts . Well I saw my consultant three months ago , I asked him if I was suitable for these ( having a FEV>18 with serve emphysema ). He arranged for me to have a High Resolution scan. Which I had on Christmas eve. Well I saw the consultant yesterday ( I was in high hopes) but unfortunately he said my lung were too bad , not enough lung tissue to work with. So I am has you can imagine very downhearted. Where do I go from here?

11 Replies

  • I'm sorry to hear you've had such a massive let down Mikefever. I noticed It seems a lot of people aren't suitable for these new procedures, either their lung damage isn't in the right place ect... It gives people false hope.

    I know it will be hard, but please try not to let it drag you into dispair. There are many on here with a low FV like you who will be along to talk you.

    I don't know where you go from here but in your shoes I'd consider trying the vitimin A suppliments that have been posted on here lately by a man who's wife is doing very well on them and she was in a very, very bad way. I don't know if you've read the post yet, but it is well worth a read.

    Many on here have said they are going to give them a go because of it. I gather you have to check with your docter that your liver is ok to take it but, it is definately worth a try.

    Best wishes xx

  • Many thanks Casper99 for your kind reply .Yes I read the post about vitamin A, but I felt it was the only person that had this great result.:(- x

  • Worth a try, no? Be sure to get the capsules recommended and not the tablets.

    All the best to you. P

  • Thanks peege, I will try them. Nothing to loose.:-)

  • Hello Mike, really sorry you had such a huge let down, did he not suggest lung reduction or transplant? It seems so stark? When I was on another site, I knew a lady that had 12% lung capacity, and was severely overweight through long term steroids use.....she came off the steroids and started a fitness regime ending up swimming three times a week while someone carried her oxygen, she lost fifteen or more stone ( can't remember exactly but it was a lot ) and her fev1 increased to over 40%, she no longer has oxygen, I was amazed when I read her story, a very inspiring lady!

    Please don't lose heart, you can move mountains with an ounce of hope, I will be sending out positive vibes for you, hugs huff xxx

  • No he did not mention lung reduction or transplant .Thanks for your good wishes, take care Hufferpuffer . :-)

  • That because we got ignored in the past .no treatment available .let us get too bad.

  • Colours23 I agree with you, we still carry the stigma of smokers.

  • So sorry. I am on 100mg flecanaide twice daily with Adizem and Doxasosin and have been fine for 5 months. Ask to increase flecanaide. You can take 300mg a day l am told. What was making me feel lousey was warfarin. Since going onto Apixaban l have felt much better.

  • Thanks joholl, take care. Mike :-)

  • I was put forward for lung valve therapy about 2 years ago,I underwent various tests to ascertain my suitability for the op & was deemed to be a suitable candidate, I have since failed to secure funding for the op to be carried out despite my mp & the welsh first minister (supposedly) working on my behalf, & my specialist doing his best.

    Best wishes ,Mike 71

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