Well Denver was fantastic! We went to the King Tut exhibit, stayed at my favorite hotel, and in general had a great time! This trip was just a checkup for both doctors. The rheumatologist did lab work, and says that I am having a flare. Nothing too big, joint pain and a new rash (discoid). There was talk about CREST syndrome, so now I have to do research on that. He asked if I was happy with where my symptoms were, and I said no. Depending on what the lab work says and how I feel we may try to change some medications. I go back to him in December. The cardiologist (who I see for my PH) said that my heart function and size are back to normal, and that my pressures are only slightly elevated showing mild PH! Yay!!
I start training tonight for a new program that will be beginning mid September, a mentor program. I will be contacted by patients with questions or concerns by email. The hope is that this program (there are several mentors) will be able to comfort and inform patients with new diagnosis, and of course those with not so new diagnosis.
