I can't even put into words how happy I am with my new rheumatologist. It's like a breath of fresh air after sitting in a smokey room. She spent forty-five minutes with me yesterday, at a follow up visit. I don't know the last time I got more than fifteen minutes of a doctor's time. She went through all of my lab work and the radiologist's report on my CT scan and explained what each test was for and what the results meant. It blew me away. I had no idea what I was missing.
I know that probably sounds odd to anyone who has never really needed to spend more than fifteen minutes with a doctor. I certainly never had more than fifteen minutes worth of stuff to talk to a doctor about before I got sick. If you have an ear infection, a cold, anything else that isn't chronic, there's not all that much to say, but when you have sixteen different blood tests for various antibodies and complment levels and radiologic tests, there's plenty to talk about. It's also awesome to have someone there who will talk out your options, the pros and cons of everything and to formulate a plan for moving forward.
Okay, so enough of my amazement; the results: it's not lupus, it's not scleroderma, it's both, with elements of rheumatoid arthritis as well. Mixed connective tissue disorder, to put a name on it, with prevailing scleroderma. My lungs, well my lungs aren't in great shape. She said we're looking at an autoimmune, inflammatory response that is making my lungs more rigid and the narrowing of my pulmonary arterial vessels which increases the pressure needed to move the blood through my lungs. The two factors combined have cut the amount of oxygen that should be getting into my bloodstream in half. So, we didn't come to any conclusions yesterday, but there are options and both high dose chemotherapy and bone marrow transplant are on the table. She wants me to see a pulmonologist at Thomas Jefferson who specializes in critical lung care in autoimmune diseases and then - get this- they're going to work together to figure out whether things are severe enough to warrant the seriousness, commitment and risks associated with a bone marrow transplant. It's great to have doctors that will be collaborating; as much as my previous doctors have passed on lab reports and office visit summaries to one another, I often feel like a kid passing messages back and forth between divorced parents, and it's aggravating.
So once again the long term plan is blurry and the short term plan is waiting for next month's pulmonologist appointment and increasing the immunosuppressant, azithroprine, that I'm on right now. It's frustrating, but I feel better about it than I did before. I've skipped so many rheumatology appointments because they never gave me any sort of hope, any feeling of progression, or any sense that they we trying to do more than maintaining the status quo. Having doctors that are trying to make things better and are serious about it makes all of the difference. I walk out of the building with a sense of hope and peace and it makes all the difference.