Thankyou so much for your reply and concern. I was actually told at the time of my diagnosis that I already have scarring and fluid in my lungs. That was back in June of last year. The rheumatologist I was seeing wasn’t very knowledgeable and me ver even ordered a ct scan or echocardiogram. I was there for 9 months. In March of this year I moved to a very small town and asked my new pcp for a referral to a new rheumatologist. I waited and asked repeatedly for several months. This is a very small drs office with one lady working up front and one nurse. When I asked the nurse once again she pulled my chart and said the referral had been done 2 months prior. The lady up front claimed she did it but obviously didn’t. They finally did the referral to a rheumatologist that didnt have experience with systemic sclerosis but still I was relieved to be getting any kind of help. An appt was scheduled in 2 and a half months. One week before my appt they called to tell me my appt was canceled because the dr was no longer with them. So then my pcp said he would refer me to Mayo. It’s been 2 weeks and no word. Once again I’m waiting on the referral. I just don’t know what to do. I desperately need help. My lungs have worsened along with severe gi problems and muscle and tissue loss I have infection in my toes and have lost the fat pads and tissue in the bottom of my feet. I’ve been on these meds for so long with no monitoring. Can you please tell me who I can reach out to at Mayo that could help me. Im so grateful that you responded. Praying I can finally get to someone who can help