After waiting the usual 4 months it was time for my chest consultants meeting at the hospital. We arrived at the clinic with plenty of time to spare and it looked as though we were in for a long wait as it was very busy but after spending a lot of time around hospitals that was almost expected and don't bother me.
After a long wait the nurse as usual weighed me and checked my sats etc and then sent us through to clinical investigations for a lung function test, she told me that I only needed to go on the small machine and it wouldn't take long. At this point I said oh' I'm booked in for a full spirometry test because my lung problem is not the quantity of air I take in and expel, its in the gas exchange which only shows up on the full spirometry test on the large machine.
She said we may not have time for that but I will see what we can do and she left us in the waiting room. After about a half hour a technician came and took me through to do the test and sat me down in front of the small blow test machine. Knowing that this was a test that would not show how the gas exchange was working in my lungs I said there is no point in doing this test on me as it wouldn't help me or the consultant later, so I said if you can't do the full test as I was booked in for then I would come back another day. I had already been prepared for this as it was obvious to me they were trying to cut corners and rush people through. The nurse then took us back to the waiting room and said they would have to see what they could do.
One thing I knew was that I wasn't going to budge on this as the full spirometry was the only test that would tell me how my lungs were doing compared to my last tests and this was even more important to me at the moment because not only my consultant needed that information but the Transplant consultant at the QE also needed it in a months time to help him and me in our massive decision on whether I should stay on the transplant list or not. This decision was very much in the balance and all concerned needed as much information as possible on the table.
Anyway digging my heals in did the trick and a technician returned and took me through to do a full respiratory test on the larger torture machine. The outcome of this test proved to be very important to me as it showed a slight improvement and I was now up to 30% gas exchange. (amount of oxygen getting to the blood against the amount of carbon dioxide leaving the blood) through the alveoli.
Talking to my consultant just after I said there is a slight improvement and in his very words he replied yes but 30% is still crap isn't it. It was one of those moments where we both laughed even though we both new its a pretty dire situation.
Oh well I came away pretty pleased with the knowledge that my lungs were still holding steady after 3 years and if anything there is a slight improvement.
I now look forward to next months meeting at the QE with my transplant consultant and what he will advise on whether or not transplant is my best option or to continue as I am, breathless but sort of coping at a very steady pace.
At least we will have the information necessary to help us make this huge decision and it seems as though there are times when knowing as much as you can about respiratory tests and how the body works can really pay off when the nurses are trying to get home early and rush you through hoping you'll just go with the flow, it was a time to stand up and fight for what was right. I feel justified in what I did because the little extra time spend doing the job properly meant that the consultants time wasn't wasted, our time wasn't wasted and valuable information was gathered by all.
Healthunlockeders, it pay's to be as knowledgeable as you can about your particular lung disease and stand up and shout when you know things are not being done correctly.
Tony. Look after yourselves everyone and may you all continue to breath easy.