- Fibrosing Mediastinitis
- Interviews
Toddathon1's interview
How did all start?
chest and back pain. cough and streaks of blood in mucus.
Do you already have a diagnosis? How long did it take you to get it?
yes. circa. 1983.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Pulmonary Shunt left side. Relocation of the left pulmonary vein to the left atrial appendage. An attempt to circumnavigate future fibrosis that may affect the left side. I do not know if it was effective. It was strictly an experiment with no way to evaluate the results. I may have worked...or the fibrosis may not have effected that side since then anyway. No way to tell. The operation was quite an ordeal.
What has been the most useful thing for you so far?
keep moving.
What have been your biggest difficulties?
moving. and not getting depressed.
How has your social and family environment reacted? Have your social or family relationships changed?
They tend to forget because I don't look unhealthy. I swing between taking on big challenges because "there is no tomorrow" and I get depressed because "there is no tomorrow". And yet I've lived with it for 35 years....so it's been mentally fatiguing. Constantly in pain....feeling like this is "it".... but carrying on.... hope that makes sense to somebody.... if so, your not the only one feeling that way.
What things have you stopped doing?
I still try everything....... I just do it really slow or in lots of pain.
What do you think about the future?
No clue.
So far, which years have been the best years in your life? What have you done during them?
Mid 30s to mid 40's. I had an actual career.
What would you like to do if you didn’t have your condition?
EVERYTHING!!!!!!!!!!!
If you had to describe your life in a sentence, what would it be?
I'm angry, I have so much I want to accomplish.
Finally, what advice would you give to a person in a similar situation?
Unfortunately I have no advice. This disease like any other disease, sucks.
