Thanks Colleen, I will definitely do that. I traditionally do not like to complain about anything and don't want to cause issues for the doctors involved as I know they are swamped. But I will share my experience in case it just helps overall process, etc... Thanks Again

My husband has a care team at Mayo for an unusual parotid gland cancer. At diagnosis (6 weeks from first symptom to surgery the cancer was stage 4A) and he has had excellent care from the first visit.

I have a long history of autoimmune disorders, beginning at age 9 with rheumatoid arthritis. As an adult I've developed numerous disorders: Sjögren's syndrome, gastroparesis, orthostatic hypotension with no rebound, systemic vasculitis with polyneuropathy with peripheral and autonomic dysfunction, Grave's Disease, Heart Failure, Pulmonary hypertension due a faulty immune response. Can't make this stuff up! I have a rheumatologist, neurologist, cardiologist and nephrologist who don't communicate with each other. Being a retired RN I knew there had to be a better way. After my husband's experience at Mayo I've tried getting in through all of the above specialities after requesting an appointment with Internal Medicine. NONE of the departments have appointment availability.

Basically I need a coordinator of care, communication between specialities, etc. I take mycophenolate, IVIG every 4 weeks, Prednisone, Ranolozine, Midodrine. The neurologist and cardiologist have prescribed different drugs for hypotension and I can't get them to talk or tell me why they think different ways. I've chosen Midodrine for the time being and will see how it goes. I've had the same Neurologist for 26 years and trust him.

I had so hoped for coordination at Mayo as these are serious problems with some serious drugs and possible side effects. My entire life has been lived according to my health, but I'm blessed with a husband who loves me no matter what, 3 children and 4 grandchildren. For all this I'm thankful though my world has contracted so much I don't leave the house much due to symptom management. Anyway, hang in there and continue to fight for care while finding peace in the situation. Hugs...