We’re back to our warm Missouri peace! Really great trip but glad to be home.
So chemo is my treatment answer, gonna knock out the faulty immune system and see if I can “reboot” so to speak. I was really hopeful to be put on a new stem cell trial but I didn’t meet the criteria. Boooooo hissss, but maybe next time. There’s 20 people in the trial right now and it’s looking promising for people with “my kind” of Crohns.
Besides learning that I was misdiagnosed with reactive arthritis I found out that the lung involvement at Christmas was Crohns and my lungs are clear now and functioning almost properly. SO good news!
I also have several broken ribs that I’ve been walking around with, most probably caused by all the violent coughing. I had NO clue…ALSO I have a heart murmur. The docs at Mayo found EVERYTHING!
In 4 12 hour days I met with 6 specialists, had 4 sets of x-rays, 2 MRI’s (the story of the MRI’s coming tomorrow – it’s hysterical), 2 CT’s, 2 pulmonary tests, an echocardiogram, a stress test, about 9 tubes of blood drawn and a poop test! AND a lot of sitting and waiting. I can’t name one of my areas that hasn’t been “checked” by the best!
Next week we meet with the docs at Barnes Jewish Washington University in STL, they will handling my care with oversight from Mayo.
All I can say is Thank God for good insurance! AND thanks to my wonderful husband who works his butt off to keep us covered!