I had my follow up meeting with the hospital lung consultant yesterday. I did not see the one before that got my information so wrong I thought I had some one elses diagnosis! But a very pleasant spanish lady. Who looked at my latest x ray (previous one had not) and stated that from what she has seen I do not seem to have damage from Asbestos yet, But it is one of those evil products that can sit there without detection for many years! What shocked me was there seems to have been a communication with my cardiologist as they explained how both my conditions are not helping each other. It seems the decision not to install the pacemaker and then ablate the sinus node making me pacemaker dependent was more because of the effect it could have to my breathing? Cardiologist has stated that would not survive any other operations!
I have lost weight so that is good news. I have been told that they will see if I can go to PR again and I may find ways of coping with it better. Plus I am going to have another sleep Apnea test as the last one failed as I only had it on for 3 hours and slept for one of them. My wife confirmed that she has seen and felt me stop breathing at times, I am still waking gasping for breath but not every day. This time I did feel that I was been dealt with and understood the problems I have in my daily life.
The negative side was that the conditions have shown no improvement and it is very important I do not get any infections or it could shorten my prognosis or worse?
Her closing words were If I could give you a Magic Pill I would, I am sorry all I can do is try and make it more comfortable for you.
I have Restrictive Lung Disease, Pulmonary Fibrosis, Paralyzed Diaphragm, Atrial Pulmonary Hypertension, Atrial Fibrillation, Tachycardia, Arthritis, Reflux and one or two other things that pop up from time to time like Gout and Migraines.
My Lung capacity is 57% upright 44.8% when flat. Process O2 well but do not get enough in once I go from sitting.