IVIg and ANCA negative

[LisaMac]

Good luck with all of that.

[drz]

[QUOTE=Jaha;95253e It would be so nice to just have one doc for this crappy disease. Just given an update, take care all.[/QUOTE]

This bugs me too. I see a dozen plus different doctors at 11 different locations but don't have anyone doctor to help coordinate my care. The specializing today in the health care system is very frustrating to me as a consumer of health care. I recognize that it would be an almost full time job for any one doctor to try coordinate all my medical care. So I have to get copies to carry along since requests to send info from one doctor to another often seem to get lost or the doctor I am seeing can't locate the info or find it or access it for some reason. Most don't want to be bothered either with trying to sort out info from all the other doctors and just want to focus on their special area and any important changes since you saw them last.

I have got pretty adept at tracking my labs, and juggling and scheduling my many appointments, but some times I guess wrong or don't correctly anticipate what symptoms warrant a visit to which doctor. It is stressful being a full time patient in the health care system and a tough job but I guess some one has to do it and that I was one of those selected to do it. I have met some nice people though in the health car system who recognize me on sight.

[mrtmeo]

I had a phone call from my Rheumy at CC on Friday evening, she was finally getting back to me about referrals to other Drs. I had requested in Dec. I had called the office to ask about changing rheumy's because she is apparently to busy with taking on patients of a doc that retired. She was really sorry that I wanted to switch docs but, she said that she had put the orders in and that somebody dropped the ball in the other depts. She told me that if I needed her she would take me back as a patient. She gave me her opinion on choosing one of the two that I had wanted to move on to. Today, I looked on My Chart and there were appts. made for me for next week. It will be very weird to see someone else, but I think it will be a fresh look at things. I am also going to see a neurologist and a gastroenterologist. I'm still need to get looked at by a kidney doc and then go back to my pulmy and ENT. It would be so nice to just have one doc for this crapy disease. Just given an update, take care all.

It is really crazy with seeing all these specialists.
It is like drz says that we have be our own coordinators.
I think there needs to be a school for vasculitis that teaches us how to manage our disease.