Hi all - I'm a newbie here and I'm also an American from the great state of Texas. I am in the process of trying to qualify for a clinical trial to test a treatment using metal valves/coils which are inserted into the lungs via endoscopic procedure. I read somewhere that this treatment is commonplace in Europe and am wondering if any of you kind folks have had any experience with this? If so, I would so appreciate it if you could share your thoughts and feelings about the outcome for you. Thanks in advance.
PS: Just want to say what a lovely group of people you are. Although I don't normally post, I get much enjoyment from reading your stories. It makes me feel I'm not alone in struggling for breath. So thank you for that and for being so kind and supportive to each other.
All my best to you,
Martypants
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Martymack69
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I haven't had the procedure but a friend down the road has. Endo-bronchial valves. They insert them where there is significant bullae and then deflate that part of the lung which is no longer any good. The valves prevent air getting back.
It is for those with emphysema and even it is not for everyone. It depends on where the damage is and if it's in identifiable. It works rather like lung volume reduction surgery, so that the healthier ling can expand and work better.
Welcome to the forum, lovely picture. A friend of mine who I attended PR classes with had the lung valves he was in his 70's and was able to take up his hobby of bowling again, as he didn't need oxygen all the time. He did get a couple of infection but they managed to sort him out.
Hi kimmy59! The outcome for your friend sounds like manna from heaven. Traditional therapy is not helping me much, but I'm sure I would be a great deal worse without it. Thanks for the kind welcome.
I was trying to put my picture inside the little circle next to my user name, but somehow it posted as a giant photo. I should have asked one of the grandkids to help me.
Hi All - thank you for your kind responses. We all have to start somewhere and it seems like Europe is ahead by leaps and bounds with using this procedure. And from what I have read, the outcomes are most encouraging.
Anyway, I will keep you posted as I move forward. If I had known I was going to live this long, I would have taken better care of myself.
All my best to each of you. It helps to know that there are others in the world going through similar issues and that we are not alone in the struggle.
Best,
Martypants
3 Grown Children; 3 grandchildren and all 6 precious!
Good afternoon Martypants and welcome, beautiful lady
I personally don't know of this procedure, but I see you have had some replies - what an amazing forum this is, so many here with offers of advice and help, and have the correct knowledge too.
Pollution feels quite high here this afternoon. I've had to abandon working in my garden for a while as breathing is becoming harder work than actually shovelling manure, but hopefully I can get out again in an hour or so. Maybe for the best, as where I'm working there is a great tit's nest and Mr And Mrs GT have been getting very cross with me as I am in their flight path - I can hear their family squeaking for food. Oh it is a lovely little noise....unlike the shrieking of the young starlings who have all fledged today - what a racket. I've had to rush and get my washing off the line for they don't care where they deposit their sloppy droppings. Think they have all gone for siesta now.... and I think that is what I might as well do.
Hi Jennifer S! Thanks much for the warm welcome. It really helps to know I'm not alone in this fight to breathe. I certainly know what you mean by the ill affects of pollution. It was also really bad here in Texas yesterday and I was miserable all day long. We have another ozone alert for today, so my plan is to not step one foot out of the door.
I'm quite embarrassed about the picture that uploaded. I was just trying to add it to the little circle next to the user name, so that people would know I'm not a man. Anyway, it posted at a gigantic size. Next time I will have the grandkids help me.
You do right to stay in today. There is no escape is there, but at least if you have to stay in you can do something you enjoy, like read, and rest.......or write to us on HU
Nothing to be embarrassed about; It's lovely to see, and I have forgotten how to put a photo in the little circle. I made a mess of it a few times. I imagine one of our members will tell you how before you have to ask your grandchildren!
Have a good weekend, and hopefully you maybe can get outside by Sunday if the weather improves.
I hope you have a lovely weekend as well and Happy early Mother's Day to you.
I'm enjoying the calm before Sunday's storm. There is no telling what they have in store for me this year! Rowdy bunch they are whenever we have a celebration. Wouldn't have it any other way!
The forecast for our weekend couldn't be lovelier. Sunny skies, lows in the 50s and highs in the mid-70s. Why is it that the more beautiful the weather, the more my COPD acts up?
Sounds as though today is Mothers Day in America:-).....have a wonderful celebration with your family. Our Mothers Day was in March.
Pollution was up yesterday so nothing much was done in my garden, but I reluctantly pulled up wallflowers that were still blooming well, as my greenhouse is full of Brompton Stocks that need planting out so I can concentrate on growing tomatoes and cucumbers.
Today air quality is supposed to be better and temperatures set to be up in the 70's. It's coming daylight now, so Merlin and I will be off for our morning walk very soon once I've had my second cup of tea......he is ready now, sitting by his dog lead hanging up in the hall.
I had this done and it was brilliant for about 18 months and then I deteriorated, I was told the only options were then a lung transplant or lung volume reduction surgery, despite initially being assured the valves could be removed if there were any problems. I opted for the reduction and had two thirds of right lung removed. 12 months on I am still in pain, and wish I had never gone down this route.
I domt want to put you off. Just be aware of the problems that could arise.
Thanks for sharing your experience with me and I'm so sorry the result did not turn out as you had hoped. Why can't foresight be 20/20 instead of hindsight??!!
It is a difficult decision because there are quite a few risks involved with no guarantee of success. I have been so miserable of late that I'm almost sure I will sign up (that is IF I qualify). One of my brothers is a doctor and he thinks I should "go for it" since I'm completely healthy other than the COPD/Emphysema. But still - I haven't been able to decide.
Marty..I'm in Houston, TX and I was part of a clinical trial using the titanium coils..I felt better for a short time after the first lung but no improvement after the second lung..in fact it seemed there was no measurable increase to brag about. I'm glad I did the procedure though, you can never get better if you don't give it a try..the general consensus was that the men in this study got better results from the procedure than did the women..my Dr is very open to suggestions about newer meds or just about anything else out there that's available and might help our disease. I can call and ask about things to try and get a straight answer..he's just great that way, no ego to threaten in that way..I feel blessed having him and his great staff on my side..you can email me if you'd like or call..let me know if you'd like to check into this further..I know he's getting ready to do a study involving the valves..Wendy
I'm hearing the same thing from several people and it will probably have a bearing on whether or not I decide to participate (IF I qualify, that is). It sounds like you have a really good doctor - and not all of them fall into that category. Like you, I am totally blessed to have a wonderful doctor as well.
His mind is wide open to new ideas and innovative thinking when it comes to treating those of us with serious lung disease. But I am always interested in new meds and treatments
I would very much enjoy talking to you about things and asking more about the study you were in. I don't know how to reach you, however. Would that be a part of your profile information? Whereabouts in Houston do you live? I'm way north in The Woodlands. We have an enormous medical complex up here and it is still growing. Unfortunately, I will be a visitor there more and more as I grow older. I guess the alternative is better. LOL ...
Gook luck and I hope you are accepted if you qualify. If you do I hope you will post your experience both with the procedure and the changes you experience as a result of the procedure.
Curious if the Martypants should contain an additional S?
I will certainly share whatever the outcome happens to be. I love this group for that very reason - the sharing of information with each other (along with the kindness and support that is so evident).
And I'm curious how you know that one of my nicknames is Martypants. 😊😍😎
Hi MartyPants. I also went for this procedure but was told I could not have it as my emphysema was too evenly spread. I was offered an alternative which was lung denervation. This is non invasive and was carried out on April 20th. 4 hours later I walked out of the hospital and my daughter said to me "mum you're not heaving!!" I have had mainly good days since then, a few more breathless but nowhere near as bad as I was. At the moment I am laid up with Flu, but my lungs are clear.
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Hooray!!!!
