John's story of Pulmonary lung valve placements.

[derrylynne]

I have today published John Ratcliffe's story onto my blog. A rather long one but am sure it will be of great interest to those of you with very severe copd. I know it gives me some hope for the future. You may see this at wp.me/p13U8N-ca

[kimmy59]

What a fantastic story it does give you hope, I wish him all the best for the future.

Kim

[libbygood]

I read John's story with much interest and as you said derrylynne hope for the future, thanks.

Libby

[chang]

Thank you for sharing a very inspiring story that can give hope for some patients. Hope is a prize worth fighting for, through the darker days that visit all.

[vikky]

Very interesting Thank you Derek

[johnwr]

Hello people,

I'm John, the patient who had the op. I'm happy to answer questions, either here on this page, or another page entitled - 'Any information on endobroncal valves fitted to lungs? thanks'.

I've got loads of info to give.

[caroleoctober in reply to johnwr]

Hello John, I have been reading a lot about endobroncal valves, and was thinking of aasking next time I go to GP but I am a young 70 with severe copd and on oxygen 15/24 do you think I stand a chance, Regards Carole

[johnwr in reply to caroleoctober]

Hi Carole.

It's not about age. It is more about the chance of getting a good useful result. Attitude may be a factor if you are competing with others to get on a consultant's list, but the biggest decider is what type of damage you have within your lungs. As the disease progresses, the internal structure of the lung gradually disintegrates forming cavities. If the cavities formed are relatively few and larger, there is a better chance of a good result than if the cavities are many, small and ill-defined. I would say push for an examination. in the mean time, do what you can about getting as fit as possible. In the next couple of weeks, I am expecting that an up to date list of hospitals where the procedure is done to be published. This will make it easier for GP's and local consultants to know where to apply for for their patients to go.

Hope this bit helps. If you have more questions I will try to answer them.

Stay interested because curiosity is a good driver.

regards. Johnwr

[eepee8 in reply to johnwr]

Hi John thanks for sharing. You are very inspiring. I am hoping to have a similar implant - Lung Volume Reduction Coils. I like you have been turned down for Lung Volume Reduction Surgery as I have too low FEV reading and would probably not survive the operation and if I did I would probably end up permanantly ventilated. It was interesting to read of the post operative complications as I have been warned of these and it was good to hear how someone that had been through it coped. Thanks for sharing.

[johnwr in reply to eepee8]

Hello eepee8,

Glad to hear you've got as far as you have. I would say go for whichever system is advised for you. Each system has its own set of benefits and limitations. What suits one patient may not be best for another. One question I would want answered about each system is - 'If it turns out that this type of device is causing problems after the operation to fit them, how easy is it to reverse the operation?' Also ask why they chose one system over another. Look at the promo videos issued by the manufacturing companies to get as much info as possible about each product.

Having had a valve system used for myself, I am a little biased in favour of valves. Part of this is because they can be removed easily. I don't see that coil systems are as easy to remove if there is a problem.

This answer probably throws up more questions for you. Ask and I will try to answer them for you.

regards for now

Johnwr

[arran]

Brilliant news, thank you

[Hidden]

Fantastic thanx johnwr and derrylynne

[amster]

Very interesting some hope for the future

[Twiggywiggy]

Great story amazing

[acme]

Looking forward to hearing more John, Well done