Not posted for a few weeks as have been awaiting some results and specialist appointments. Towards the end of last year my Local lung specialist advised that my Emphysema is so far advanced, there was no treatment or process that could be offered to alleviate my symptoms. I was told I had reached then end, there was nothing that could be done, and in a nutshell, Im done. I did push, and I got referred to the top lung reduction/ Lung Valve specialist up in London, for a second opinion.
So, I went along did a whole new set of lung volumes, Blood Gases, Shuttles, CRT/CT and so on. This was in January, and today was my final meeting where I would learn if indeed there was nothing for me.
In a nutshell, there is nothing they can do. My disease is so far spread through so much of my lungs that lung reduction simply isnt a viable option. Neither do my lungs have the capacity to respond to lung valves, as my lungs are so badly diseased there is no one area they could target with valve technology, the specialists words being' Whilst we could put valves in, basically all that would be doing is to block air going to one bad bit, and just funnel it round to the next 'bad bit'.
My exact words at the end of my meeting -' So Im basically buggered?' To which the Doctor looked down, and mumbled a few platitudes about getting my meds up to scratch, and having yet another shuttle walk to see if I'd be getting any benefit from ambulatory oxygen. I was sent off for a few basic blood tests, and was told that they would discuss my case at a meeting next week, but that there would be nothing new they could offer.
Ok, So Im not yet 50, both my lungs are damaged beyond repair, and the specialists have washed their hands of me. No mention of Lung transplant, nothing, the door has been shut, and my case closed as untreatable.
I am severely depressed as you can imagine, I simply dont know what to do next. I am unable to attend pulmonary rehab, as a long term chronic pain in my right thoracic area has led to me being sent home from 2 different rehabs, being told that I couldn't continue as my pain wasnt under control.
I have purchased a treadmill, and am using it daily, along with a bike which I do a few minutes on. I am doing all I physically can to stop the spread of this disease.
Guys, simple question, what on earth do I do now? Any advice most gratefully received.