LVRS concerns

Posted , 6 users are following.

My husband has had three procedures to insert valves in his left lung over the past 15 months - each of which has failed. No-one can tell us why. His consultant has now suggested surgery to his right lung initially - scheduled to take place in two weeks' time. He explained all the risks and chances of improvement and said he would feel pretty rotten for between 6-9 months afterwards!!! I have done quite a lot of internet research (dangerous, but I can't help myself!!) and the BLF states there is a 1% mortality risk, papers submitted by surgeons suggest up to 16% and his consultant said 8% - quite a range. He is also having the op in the cut-off week before they stop lung operations for the winter. I wondered if anyone on this site had had the procedure and how they felt about it (for or against) and whether the risk of recovering from such an op over winter was worth taking. Just for info, at present he can do very little for himself except watch TV and read - the BLF site states if you can't walk 140m in 6 minutes, you would not be considered - strange that his consultant is happy to carry out the op - even though I very much doubt my husband could do that?

Many thanks

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  • Posted

    @ros6952  Dear Ros, if he will benefit from this procedure, if he were my husband, I would be tempted to encourage him.  After all, his quality of life is very poor ( I would imagine) as mine is for health reasons. i would take the risk if it was for myself, sadly I haven't got the option,  Blessings to both of you.  MaryLip

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    • Posted

      Thank you, Mary - I just worry he will be even worse afterwards. He has said he will have the op - it is just me worrying for both of us (although I am sure he is churned up inside!)
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  • Posted

    Hello Ros, I had 3 valves put into my left lung last February & noticed the difference almost immediately, but by the end of the year, my lung volume was almost back to what it was pre valves which was very disappointing. When I discussed this with my consultant he referred me back to the consultant who did the procedure, at the Royal Brompton Hospital & he got me back in again & I've just had a further 5 valves put into my right lung this time. Valves don't work for everyone, but I'm keeping my fingers crossed this time, as I don't really want to go down the route of having surgery or a transplant! I'm also Alpha 1 which doesn't help! I'm with Mary on this - if it helps to give him a better quality of life, I'd go for it! BUT your husband needs to be more active. I know it's difficult when your so out of breath, but perhaps he needs oxygen, help from Respiratory Care, join a gym, do a Pilates class? I do all of this & it does help & incidentally, I'm 60+ so not a teenager! Good luck!

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    • Posted

      Hi thank you for your reply. Steve had a good reaction after each of his valve procedures but reverted to type within a few weeks. He can't have them in his right lung as it isn't suitable so we are at the end of the road with that one. He does try to exercise walking round the house but can't do any more than that - pulmonary rehab suggested he stopped until he had finished at the hospital - no-one else has bothered even though he is under the BLF nurse umbrella in the area. It seems they only react if he has been admitted to hospital with an exacerbation , which he hasn't had for a year now. His oxygen levels are almost normal so that isn't an issue. We will just have to see how it goes.

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  • Posted

    Hi ros6952

    I've not had LVRS so can't help you with that,  I would suggest you go to healthunlocked/blf and put in the search box LVRS, you will find a lot of posts come up.

    Also you can post this topic on that site, there are quite a few who have had LVRS active on healthunlocked/blf.

    In addition give the nurses on the BLF helpline a call to seek their advice.

    Winter is a dodgy time for us all on top of that usually patients have to go for an assessment to make sure they are fit enough to have the lung op, so you are right to query things I think.

    Best wishes V

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  • Posted

    I am on the BLF site and will say I find it extremely informative.  Like Vee said put the search term in the box and all previous replies will come up.  BLF is a very active site with lots of members who post and reply.  Not all members are from the UK but that doesn't matter at all as everyone is welcome.  x

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