|
Julie, welcome here. I'm guessing since we had to wait too at different stages till we got established with a medical practice that can handle my husband's MDS that there is a backlog of patients and not enough doctors. We attend to his medical needs locally but did ask for a second opinion and were refered to Seattle and did that 6 months ago.
I bought a black date book sort of thing where I put in my questions, blood pressure readings, ferritin levels, details of blood transfusions. This little book goes everywhere with us for appts and just to have in case we are out of town. I write right in there the answers to my questions plus appts ahead.
There are meetings of groups for MDS and there are sessions put on by AAMDS which is the parent organization of this forum. There is also MDS Beacon. Plus I read on the NIH site and other cancer sites. I look forward to attending the MDS meeting Saturday at the Fred Hutchinson Cancer Research Center. There will be speakers all day and this is for patients and their caregivers. There are such meetings around the country.
Keep informed and go have fun too. You need that to be balanced.
__________________
Caregiver for husband
|