Please forgive me as I just need to sound off a little to people who might have an idea of what I'm going through, and may have some suggestions.
I'll start with a bit of background....2009 I was taken ill at work with chest pains, I'd already noticed the severe shortness of breath on exertion or getting ready, brushing teeth etc, which I assumed was due to me being in my mid 30s, I'd also had a persistent dry cough for well over a year, I went to my G.P. about the shortness of breath, I had to see a stand in Dr who was covering holidays, and I was told to come back when the cough had gone, I did try and explain the cough had been there over a year, but was still brushed aside by the locum, I went back again and saw a different Dr who immediately arranged breathing tests. I was taken ill a couple of days later with the chest pains, CT scans showed scarring on the lungs, a biopsy revealed significant damage, but didn't provide any idea as to the cause, the biopsy also, apparently, didn't give a definitive answer to what condition it was because it had multiple characteristics so at an Interstitial Lung Disease MDT they chose to "treat it as Desquamative Interstitial pneumonitis", they started me on 30mg of Prednisolone per day, after many months of lung function tests they decided the steroids wasn't working and started me on 50mg of Azathioprine per day, this proved successful in slowing the progression right down, I was on Azt for a couple of years when on a consultation with a different consultant I was told I could no longer take it as it was no longer prescribed for lung conditions due to side effects, at the time I took them at their word, I thought "they're the specialists, they know what's best", they said they wanted to see how my body handled the inflammation, jumping forward a few years, I am still not on any treatment, lung function tests have shown steady continuous decline, although I have always been told I was "maintaining results", then I was seen by another different consultant who is now telling me I am seriously ill and the only treatment available to me now is a double transplant, she also stated that they now know treating my condition "as" DIP was the wrong way, it has now been decided that it is Usual Interstitial Pneumonitis which apparently does not respond to the treatment they tried with me, at my last consultation I was told my VC is 46% and FVC is 13%, I was told that as they now recognise my condition as UIP there is antifibrotic treatment available that would be helpful when the VC is between 80-50%, mine is 46% so therefore I "do not currently meet the criteria for the treatment" and at the last MDT it was decided that a transplant is the only viable option so I have had heart scans, more lung function tests, I am now on ambulatory oxygen as my sats drop to low 80s during activity, resting sats are fine. I'm a little annoyed to say the least, at myself mainly for trusting the decisions of consultants, I now feel like I've been a "wait and watch" case so they could find out a bit more about the condition and how it affects patients who are younger than the general cases they may see (I was 36 when diagnosed, I'm now 44), at no point in time have I ever been told of any specialist centres such as the Royal Brompton, quite the opposite, I was told I was being treated by some of the leading consultants in this area, I was told AZT was no longer available on the NHS for lung conditions, I cannot find any evidence of this anywhere. and now I can't enjoy any of my hobbies without suffering, I have had to stop going to work because I cannot physically cope with exercising and working, and because I look fine on the outside I get looked at as if I'm just looking for a reason to stop working, despite already taking on £10k of student loans to retrain to completely changing career paths to accommodate the condition I managed almost 3 years back in work before I couldn't handle it any more.
Anyway, that's pretty much my experience, what now seems like a catalogue of poor decisions, what do people suggest, what treatment have people had for this condition in the UK?