Happy New Year to each of you...I kind of stayed quiet for the last bit hoping each of you was getting a wonderful start to your New Year. I didn't want to bring my cloud of gloom to anyone's party...
I saw my pulmonogist again on Dec. 27th and the high-res CT scan confirmed her diagnosis of idiopathic pulmonary fibrosis. Steroids won't help; long-acting inhalers won't either. There are some orphan drugs and experimentals that may slow the progression a bit but I have to get in for the 2nd opinion she's trying to schedule me for in Denver to see if they have anything that will work in my circumstances.
In my last post, those numbers I referred to are that 60% of those diagnosed die within 2 years; 80% within 4. I asked her for confirmation of those numbers and she nodded her head "yes" and said this is a very vicious disease and that was why she was trying to so hard to schedule all these things as quickly as possible.
Another curve ball found me in that she also told me that in the high-res scan they found a "spot" on the outer wall of my left lung. I go in next week to have a P.E.T. scan to see if anything shows up in my lymph nodes; if not then I'll have a needle biopsy to determine what it is. She said if it's cancer, the only option for me is radiation, as cutting into my lung will only make more scar tissue and I'm already at less than 50% pulmonary function.
She also wanted me to see a cardiologist for a further exploration of the heart testing I had in November, to make sure it was up to all the things that are coming up. I saw him this last week and he said that it is and that the place they were worried about is actually a place that is very hard to get a good picture of when you weigh as much as I do (again).
My weight has compounded as my activity levels have dropped and I'm as heavy now as I was 2 years ago when I hired into the warehouse I worked in. The 50 pounds I'd dropped has returned in 6 months, which plays into the other treatment option I may have to look at "down the road". She said if I dropped about 70 pounds I could be eligible for a lung transplant, if a donor could be found. That led me to ask her if I chould cancel the "organ donor" on my driver's license as I'd just read about a girl in the UK who died after having the lungs of a 5 pack-a-day smoker transplanted into her. She said no, that things are screened so closely that would never happen here and if I want to donate my organs that someone would make good use of the other ones.
An oxygen therapist came to see me on Friday, the same guy that brought out my CPAP machine. I've gotten more good information from him than I have anyone else connected with their company and Dottie and I spent some time discussing ways I can get back to my little gym downstairs (the machine I have right now doesn't produce enough for me to really walk; he said that if I take my "E" bottle down there I can't put a longer hose on it and to get the flow rate I need would be problematic. Then he made a note on his paper and said that he would have them trade out my 5 liter-per-minute machine for one that flows 10 lpm; if I asked them to send him out when they call to schedule, he will measure the distance I need to get from where it sits to the treadmill (50' hose plus 7' canula leaves me about 8 feet short) and get a hose made up that will work and measure the resultant pressure drop (why they don't like to do that) so I can set the machine accordingly. He also explained the mechanics of getting a portable to take on the road that will run from a cigarette lighter or 110 in a hotel room so I can sleep using it, along with a battery that will power it for a couple of hours if I need it to.
This coming week I start pulmonary therapy on Tuesday so they can try to show me ways to make better use of the oxygen I do get. When I pay attention to my breathing I do OK, but when I'm thinking of other things then it gets away from me sometimes.
So that's the news from Lake Woebegone...
May life be kind to each of you!