Royal Brompton

[kimmy59]

Afternoon everyone.

Some time ago I contacted the doctor in charge of the Lung coil trial at the RB, he said I needed to be referred. My GP agreed and I sat back and waited, in the meantime I had a appointment with my consultant who doesn't think it would be suitable for me.

Anyway my GP forgot so I had to remind him so by now it's October 5 months later, I have now been told the trial has finished but the are hoping to offer the treatment in about 2 years.

Gutted doesn't quite cover it. And then Friday I received 2 letters from RB about a CT scan and a lung function 3rd March and then today another one CT, LF and a consultation with the top man.

Not holding out much hope. As I'm sure my consultant knows the criteria for this treatment I know I wouldn't be suitable for lung reduction or valves as my Emphysema is severe and throughout my lungs.

Anyway others out there might be more successful so it's worth contacting them [e-mail]

Good luck

Kim xxxx

[Puffthemagicdragon]

According to the doc it's ok for extensive lung damage.

" Dr Pallav Shah, consultant respiratory physician, explained: “When inside the lungs, the spring gathers up and compresses the diseased tissue. This tightens the healthy areas, so they can function better – like pinching the end of a partly deflated balloon to make it firmer. As we are not removing any tissue, this procedure is suitable for cases of widespread lung damage, whereas LVRS and valve surgery work when only part of the lung is damaged and there are still other good areas of healthy lung to compensate.”

[kimmy59 in reply to Puffthemagicdragon]

Well that's I wrote to them because someone at PR gave me the newspaper article about the procedure. I do hope I am suitable.

Thanks for that made me feel better.

Kim xxxxx

[Puffthemagicdragon]

Thanks for the link.

[Puffthemagicdragon]

This seems to be the general criteria.

Participation Guidelines

Age: 35 Years and older

Gender: Both

Eligibility Criteria

Inclusion Criteria:

- Subject is greater than or equal to 35 yrs of age

- CT Scan indicates bilateral emphysema

- Subject has post-bronchodilator FEV1 less than or equal to 45% predicted

- Subject has Total Lung Capacity >100% predicted

- Subject has residual volume (RV) greater than or equal to 225%

- Subject has marked dyspnea greater than or equal to 2 on mMRC scale of 0-4

- Subject has stopped smoking for at least 8 weeks prior to entering the study as

confirmed by a Cotinine test or other appropriate diagnostic test.

- Subject has completed a pulmonary rehabilitation program within 6 mos prior to

treatment and/or is regularly performing maintenance respiratory rehabilitation if

initial supervised therapy occurred more than 6 mos prior to baseline testing.

- Subject has received Pneumococcal and Influenza vaccinations consistent with local

recommendations and/or policy.

- Subject (and legal guardian, if applicable) has read, understood, and signed the

Informed Consent form.

[kimmy59]

Thank you for taking the time to find that. The doctor did send me a list of criteria and I thought I ticked every box, I was just going by my consultant lets hope he's wrong.

Kim xxxx

[Puffthemagicdragon in reply to kimmy59]

I may contact mine soon as I think I fit too. I did read that this procedure may be ready for general use in 2 years but don't bank on it. I think the tests have been going on for 6 or 7 years now.

This would save the NHS a lot of money in my opinion, especially from some of us with oxygen therapy.

[kimmy59]

Dr Shah told me 2 years in his e-mail so here's hoping.

Kim xxx

[helingmic]

Kimmy, I think I should wait and see when you go to the Brompton. They are the top people. they will advise you what's really best, and even over your consultant. I was very impressed with all the thourough tests they perform there. I was even shown how to clap my chest by a physiotherapist there. bind your time till you see them. In the meantime, try to enjoy Christmas. it's worth putting a bit of joy in yourself and keep your spirit up. Mic

[kimmy59]

We must have been writing to each other at exactly the same time how weird.

Kim xx

[FarmerD]

Hi Kimmy,seems we are in a similar boat,they think I,m not fit enough for lung reduction so I,m also hoping I may be a candidate for coils.I see Dr.Shah in February so here's hoping,will let you know of any progress.Take care,D.

[kimmy59 in reply to FarmerD]

Good luck for February I'll keep everything crossed for you I really hope we are both suitable.

Kim xxx