- Autoimmune Hemolytic Anemia / Cold Agglutinin Disease
- Interviews
Bob's interview
How did all start?
Started losing my energy to the point that I couldn't finish delivering mail to more than a block without sitting down and catching my breath. My heart was beating so hard that I thought I was going to come through my chest.
Do you already have a diagnosis? How long did it take you to get it?
It took a few weeks before I could get a diagnosis because after the first transfusion of 3 pints I had a pulmonary embolism, and it took forever to get to see the oncologist
For what medical specialties have you been treated? What has been the most useful specialty for your?
First they started with high doses of prednisone (120 mg). when that didn't help then 4 doses of Rituxan and even after that it took almost six months to stablize. But here I am on chemo treatment again after being in a form of remission for almost 2 years
What have been your biggest difficulties?
My biggest difficulties was losing my ability to work and to have my friends gradually disappear . At one point I became so depressed that I even tried to commit suicide. After getting the tools I needed I am able to cope better but this Disease has no cure and brings on several problems. So if you have this live each day like its your last and get some help with the depression
How has your social and family environment reacted? Have your social or family relationships changed?
My relationships have all changed. first you lose your friends and your family has a very hard time understanding this. My sister can t believe that we can t find the trigger and stop it. but I ve accepted that this is the way my life is going to be till the end.
What things have you stopped doing?
I stopped golfing , working , I used to have a construction business, can t have a dog because I can t walk it. I left my fiancé because I could no longer take care of the house or travel and that was a big part of my life. I now live in a very small Appartment that I have made look beautiful but its small enough that I can take care of myself.
What do you think about the future?
Can t think about the future because I don t know if I m going to be too tired sore or don t know if I m going to live that long.
So far, which years have been the best years in your life? What have you done during them?
My best years are before I got sick and I don t dwell on them because its too painful
What would you like to do if you didn’t have your condition?
I would have been running my construction company and would have a full pension from Canada Post. I would be working through the summer and traveling with my now ex to beautiful warm places
If you had to describe your life in a sentence, what would it be?
My life wasn't meant to be like this!!!!!!
Finally, what advice would you give to a person in a similar situation?
Get a copy of the no bullshit guide to depression and read it twice and find the help you need to deal with the rest of your life. Suicide isn t the answer it only hurts the ones that love us. Or do as I m doing try to help those suffering with the same condition. Good luck and god send!!
