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Has anyone else seen this article

elian profile image
16 Replies

dailymail.co.uk/health/arti...

It's sounds the answer to a COPD sufferers prayers :)

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elian profile image
elian
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16 Replies
northernlass profile image
northernlass

Wow, that's a great article, light at the end of the tunnel for some perhaps? I'm going to ask my doctor about this and seeing as I've never even had an xray, it will be interesting to see the response.

Now all I have to do is to remember! ha ha

Mulie profile image
Mulie

Read it before - sounds too good to be true! Wonder which particular hoops we have to jump through?

EmmyH profile image
EmmyH

That is very interesting. In spite of the cost to the NHS of the operation, it would save much more in saved trips to the doctor and stays in hospital. The benefits to many patients could be huge! Is this too good to be true? Am I missing something? Funny how some good ideas are actually quite simple.

I would happily give it a try if it was available and deemed suitable for me. I wonder if it's one of those things that only works for particular 'types' of COPD as is the case with LVRS , or would it be more generally usable? Has anyone come across it anywhere else? (I don't have time to research it today as I have to go out shortly). Do the BLF know anything about it or have an opinion on it? Parvati

in reply to

Hi

We don't have any more information than what is written in the article. You would need to discuss the suitability of the treatment for you with your consultnat - as you have said it won't be suitable for all and there will be criteria to meet. Also at the moment it is not being performed across the whole of the UK - probably only in the larger respiratory hospitals - so there is the travel to consider.

But any new treatment, as long as it has been properly tested, is a great step forward. Perhaps early days for this one - it may be further testing is needed - but let's see what happens.If I come across anything else I will of course update you.

Mark

liftman profile image
liftman

I read the article and have sent letters to my GP and specialist I am under for Pulmonary Fibrosis to see if it may be a possible treatment for IPF as well. We all cling to a hope that some type of " cure" could be just around the corner,but in the meantime keep positive. Good Luck.

Nancygirl profile image
Nancygirl

Sounds great, fingers crossed it wont be a "post code"operation and will be available to all who are suffering. While I am on dose any one get a problem with there HandiHaler for the spiriva capsule? Sometimes my inhaler works perfectly well then another morning it doesn't work properly at all, I wash it out regularly but still sometimes it works and sometimes it doesn't, any idea's please?

Nancygirl profile image
Nancygirl

Thank you Stich I was beging to think it was me doing something wrong its not every morning. How do you know if the capsule is empty before putting it in? having only just been diagnosed with COPD, I am new to using puffers I also have another one that works everytime its called Atrovent Inhaler I use it when I need it. Do you use another capsule if the one you put in has not worked?

All the very best and thank you

gillwigan profile image
gillwigan

I dont want to lower peoples hopes but .

newsatjama.jama.com/2011/09...

elian profile image
elian in reply to gillwigan

gillwigan, the report on the disappointing results is dated September, 2011. The Daily Mail report is dated more recently. I wonder if their opinions have changed. Susan Matthews certain describes herself as having a new lease of life since her operation :)

We often hold onto hope as the last thing, had news like the reports from my consultant who told me that it would not help me and any help was seen as short term for a small number. Do not worry that you can not bring good news gillwigan the truth is most important.

gillwigan profile image
gillwigan

Thanks Dott i feel its best viewed from both sides of the coin, some people may get their hopes up only for them to be dashed later, it's best knowing before hand .

gillwigan profile image
gillwigan

Hi elian yes it does seem great for Susan Matthews but we don't know how long after the op she was interviewed , the link in my post states that people were fine for a couple of months then were breathless again , it would be good if Susan Matthews came on here to tell us all how she is right now, i truly hope she is still feeling better but if we look at the number of people who took part in my link the odds are stacked against Susan Matthews I'm afraid .

xx Gill

Nancygirl profile image
Nancygirl

Thank you Stitch I shall put another capsule in if it happens again its just strange that it happend two days on the trott, better luck tomorrow I hope. Take care

derrylynne profile image
derrylynne

Yes it does work. A friend of mine with copd on O2 24/7 with FEV1 of less than 15% was sent to the Heath in Cardiff for the same procedure. As the Heath is only about 18 miles from me I went to visit John and his lovely wife, just a few days after the treatment and even then he found a vast improvement. I speak to John on Skype now, he lives in North Wales, and he has improved so much it has been a life changer. John is enjoying a new lease of life. His FEV1 is up to 31%, he now enjoys day trips out with his wife and family, and can stay off o2 for short periods. And John only had one lung treated with stents. He is due to go back to the Heath tomorrow for a check up, and is hoping they can get the funding to do the other lung.

At the moment this is being funded by the Welsh Assembly for research at the Heath, with the few lucky worse case patients being treated. It has already been tested at the Royal Brompton in London. It is hoped that soon it will be rolled out for the whole country. Remember though, this is only likely to be offered to those with severe copd. Hope this clarifies some of your questions guys.

betsyanne profile image
betsyanne

this is amazing & so worth more of a look into, i would love to have my breath back.. :)

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