Lung Volume Reduction Valves

[DecD]

Good afternoon, everyone!

I have not been around for about a year, I think, after been smacked on the wrist for two posts. I still disagree with the moderator but I've recently had five valves implanted in my right lung, lower part, to see if it improves my breathing - or improves the use that my lungs make of the air I breath in - so thought some may be interested. The theory is that those parts of the lungs where the lungs' alviolae (think buds on a bush about to flower - they extract/absorb the oxygen in the air you breath) are not working for some reason. Unused air can get trapped in those lung parts, so you can get that hyperventilated feeling, without getting sufficient oxygen into your bloodstream. Panic. The valves seal off those non-working parts, but if any air does leak in, it can escape via the one-way valves.

I caught the end of a TV program a couple of years ago which showed a guy had had coils implanted in his upper lung(s) doing the same thing, and had been able to increase his walking distance from 5 to a 100 metres. This was exactly what I wanted to do, so my search started from there. After many hiccups, I was finally accepted on a medical trial to test the efficacy of valve implants (coils are only inserted in the upper lung lobes). Completely fairly, after final acceptance as a subject on the trial, the envelope chosen by computer for me showed I was to be on the control group - to be monitored against those who had implants - for a period of 6 months, so the experts could gather relevant statistics to measure against those who'd had the op. This consisted of the same respiratory checks that we regularly get under the NHS plus a few more relevant ones. No hospital stay. After six months, the control group subjects also receive implants.

Finally, feeling fitter than I'd felt for a number of years (I'd taken up home exercising) I had the final checks and then the bronchoscopy, during which the implants were inserted. So, no war-story scars, and out of hospital one week later! The hospital week was for all to check that there were no adverse effects, and to be in the right place if there were. I drove to Devon for a weekend BBQ with my old rugby team and back to the Isle of Wight on the Monday.

About 2 weeks later, I had the worse case of man flu imaginable. As I don't readily catch colds, coughs, flu or anything else the Boss catches, it was quite remarkable. I didn't have any previous experience of this kind of thing against which I could compare, so I put up with it for three days, then emailed one of the doctors on the implant team. He advised me to see my GP for antibiotics to clear up any infection I might have caught. Two days later, an emergency appointment had me sitting in front of my GP, who agreed that I wasn't looking too good - oxygen was down to 65% just walking from the waiting room thru to her office - so she gave me a scrip for antibiotics but, more importantly, another to get x-rayed. I went to the main hospital on the island the next morning, feeling no better after the first few antibiotics, and saw two of the respiratory nurses. They checked my oxygen again and were not well-pleased. A quick x-ray showed that I had severe pneumonia, and the head nurse phoned around and got me checked into a stand-by bed, before shifting to the hospital pulmonary ward the next morning! A week later, I was cured, out and home, with a continuation of anti-Bs for 4 days.

I was still a bit weak, so could only do very light exercises. After a couple of weeks, I felt just OK, not good, but mobile for short distances. I let it go, because my GP is busy enough, plus I was due at the lung trial hospital on the following week, and thought I could get the doctors' expert opinions, and maybe they could check if it was a possible outcome of the operation. They, too, checked my oxygen levels and x-ray, then checked me in with pneumonia, again!

A week later, after penicillin three times a day, coupled with anti-stomach bug meds and nebuliser, etc., I was cured and home with a week's course of anti-Bs. They are now finished and exercising is in full swing. I'm not at the level that I was in July, pre-op, but feel a bit better with the passing days. In about three weeks, I go back to the London hospital for some different voluntary tests (measuring one's small airways to see if they enlarge or change, adapting to the lung volume being smaller) but will also be checked with x-ray and bronchoscopy to see that there is no adverse effect from the five implants. Hopefully, by then, I will be as fit as I was back in July, (fitter, even!) and able to show some good effects from the op. It's been quite a roller-coaster

I was going to apologise for being so long-winded, but didn't really didn't choose my words carefully enough. So, sorry for banging on at such great length !!

Take care,

Dec

[Hungryhorse63]

Hi Dec

Glad to hear the good news.

I've been away for just under a year.

Glad your ok take care

Hungryhorse

[sue45]

Thank you for an interesting read. I'm in early stages of trial process & will hopefully get either valves or reduction surgery at Glenfield hospital. Good luck with your continued recovery 😊

Regards

Sue XxX

[casper99]

You have had it all going on Dec, pneumonia is no picnic, for healthy people, never mind someone who has just had valves fitted.

Hopefully you will soon see the benefits of the valves and end up feeling even better than you did before the procedure xx

[Corin1950]

Don't apologise by being so long winded, I was really interested in what you had to say because my husband is being considered for valves. He was offered lung volume reduction surgery but didn't like the idea and preferred the valves. Please keep us informed of your progress.

Good luck with it all

[helena62]

hi Dec enjoyed reading I know how you feel I have had lung volume reduction surgery on my left and right lung some days I feel good other days crap still cant walk very far but will not give in Helena

[twopars12]

Good post, informative. Good luck.

[wenzelea]

I had the coils implanted and have felt no difference, needless to say I was disappointed..hope you get more benefit from the valves..it was determined that the men in our study had better results than we women did..go figure..

[flo1]

Thanks for the info, it sounds like a bit of a trauma for you but hopefully you will recover well and go from strength to strength again. I just got told I would make a good candidate for them I did 2 Scans so far and breathing test its a trail in London, bit nervous I have alpha one antitrypsin and was diagnosed in 2007 almost 10 yrs ago, I was very sick at that time and given 2 yrs to live in 2010 with fev of 22% . I quit the smokes started walking and moved to Devon near the Coast from Manchester ( polluted city) filthy! The best thing I ever did for me I was 47 yrs old when they gave me 2 yrs to live I was 45 when I got alpha one. I am really on edge because my lungs are so huge hyperinflation is my biggest bear these days but my fev is steady on 37.5 he seemed to think we should leave it alone but then after the Prefusion Scan urged me to the trail, so going to ask lots of questions , on this?? I walk daily everyday for near on a hour, I don't get breathless unless I do stairs and avoid them even at home..lol! My worry is losing what I did to get me here and going back and slipping off the cliff after nearly 7 yrs dedicated to keeping me this well and walking, watching all the toxins and generally being this driven to keep away from going back down the hill...because its a freakin awful hill...and I lived there nearly 3 yrs of my young life. I am well overall but very tired of the battle like all lung patients, the other problem is how to know if this works for alpha? The alpha experts all seem to disagree some say yeah, some nay. Hard choices for me but I am scared of going from good to bad and that needs to be guaranteed before i do much more with or about it, I was thinking I might leave it alone until I slip down further...if you can think of any words of wisdom to offer me that would be great, or anyone else I know its ultimately my decision and I know to that this works overall better on folks without alpha one....thanks!