- Sarcoidosis
- Interviews
FwdTees's interview
How did all start?
High calcium levels, low kidney levels, weight loss and no appetite. Fatigue
Do you already have a diagnosis? How long did it take you to get it?
Took 3 years to get a diagnosis
For what medical specialties have you been treated? What has been the most useful specialty for your?
Renal doctors
Good endocrinologist
Family doctor willing to see it thru
Sarcoidosis doctor in Toronto
What has been the most useful thing for you so far?
Keeping calcium under control and treating it with low dose prednisone when it is high. Initially used pamidronate to lower calcium and found I responded well to the prednisone.
What have been your biggest difficulties?
Waiting for specialists appointments. Lead times can be 3-6 months. Closest treatment of specialists is in London, Ontario.
How has your social and family environment reacted? Have your social or family relationships changed?
My husband has bee very patient, tho he does not believe the diagnosis of sarcoidosis.
What things have you stopped doing?
Golf...had to reduce number of times playing per week. Outdoor yard chores.
Laundry
What do you think about the future?
Fairly optimistic but there are many doctors that don’t know what sarcoidosis is.
So far, which years have been the best years in your life? What have you done during them?
Prior to 2013 before breast cancer diagnosis. Sarcoidosis symptoms started 3 years ago.
What would you like to do if you didn’t have your condition?
Spend more time looking after my grandkids and have the energy to take them places.
If you had to describe your life in a sentence, what would it be?
Impacted by sarcoidosis. I was a very active person.
Finally, what advice would you give to a person in a similar situation?
You have to be patient in getting specialists to see you, be your own advocate and carry a file with all results, medications and list of doctors.
