Endobronchial valve procedure

[Polly-PV]

I have severe COPD plus asthma and have just learnt about the above as a possible option to help with extending life. Can anyone enlighten me further please? Tia x

[jacic64]

Hi, I was referred by my hospital consultant to the Royal Brompton for the procedure. It's a clinical trial & definitely worth you trying for a referral. They provided a taxi from near Oxford to London & back home again. It's a tough day of tests but so worth it. If you Google Royal Brompton clinical trials COPD you should find a link there to read up on it. Pretty sure there's a telephone number you can call to discuss it with the team as well.

[Polly-PV in reply to jacic64]

Thank you so much. I’m going to explore this further x

[jackdup in reply to jacic64]

Did you qualify and if so have you had the procedure yet?

[PaulineHM]

Hello Polly-PV,

It is worth making enquiries about theses EB valves. I too have severe COPD and Asthma. As my lung health declines I enquired ( 2 years ago ) from a Resp consultant at my local outpatients and was told that the damage in my lungs is too diffuse and there aren’t enough collateral airways available to be investigated for the procedure. It was worth asking, even if the answer was disappointing.

The consultant though did go on and discuss with me the prescribing of Roflumilast. It is a drug on the Amber list so initially only a consultant can prescribe it. I started taking it, worked through some side effects and it has made a big difference to my health. It has given me back about 7 years!

I am of course delighted. So it is always worth investigating what newer treatments there are which might be available.

Do let us know how you get on won’t you ?

Go Well.

Pauline

[Polly-PV in reply to PaulineHM]

Thank you Pauline

[jackdup in reply to PaulineHM]

That’s really great to hear that the new treatment has made a significant difference in your life.

[CDPO16]

It depends on the result of a chartis assessment. I had this done via bronchoscopy in 2017 but the findings were too much lung damage for the valves to be an option. This was done at Wythenshawe, Manchester so a trip to London isn't essential.

[Polly-PV in reply to CDPO16]

Thank you so much for this x

[jacic64 in reply to CDPO16]

I failed the Chartris assessment so wasn't able to have the valves unfortunately. As the Brompton is also doing a trial for the airiseal which fixes the 'leak' between the lobes I was referred for that trial. Due to chronic bronchitis I couldn't have that treatment either. I've now been referred for cryotherapy to sort the bronchitis. All very seamless & other than the exhausting day of tests, no cost to me & no worries about finding/paying for parking. The team are amazing.

[Polly-PV in reply to jacic64]

Think I’m going to explore this further. Thank you x

[jacic64 in reply to Polly-PV]

Good luck, hope you are eligible. I forgot to mention that I have a back-up appointment with a private consultant at the Royal Brompton for September just in case I can't have the cryotherapy. They do their best to ensure you stay in the system for any other trials you may be eligible for. I don't have to pay for the private consultation as it's booked through the clinical trial. I also had a private echocardiogram payed for by the trial. It's definitely worth looking into.

[CDPO16 in reply to jacic64]

That is interesting jacic, I haven't heard of the airiseal procedure. I am no longer under the care of a specialist now and kind of doubt that Wythenshawe are as advanced as the Brompton. Good luck and I'd be interested to know how you get on.

[jacic64 in reply to CDPO16]

Thank you, I will post an update once I get my results. The airiseal is a foam that seals the 'leaks' between the lobes of the lungs. It sounds really good once you can get over the initial discomfort, apparently equivalent to a really bad exacerbation. I did enquire about the lobectomy I was initially referred for but I wasn't eligible for that due to a high risk of perioperative mortality. Seem to be going in circles to be honest, but always clinging onto the hope to make breathing a little easier! Must admit I'm not looking forward to the cryotherapy but I would love to get rid of the chronic bronchitis.

[Alberta56]

Good luck- hope you are eligible. 🤞🤞🤞

[Polly-PV in reply to Alberta56]

Thank you x