- Tracheobronchomalacia
- Interviews
Lsconyers's interview
How did all start?
I got the flu in 1994 and just kept getting sicker. Was coughing all the time and developed pericarditis. Kept having respitory infectious and inner ear pain. Lots of bronchoscopies to remove mucus plugs. 2001 diagnosed with Tracheobronchialmalacia. Given CPAP to help control symptoms and give airways a break. 2006 diagnosed with Relapsing Polychondritis. By this time I was on oxygen 24/7 and in very bad shape. Was started on biologicals and with in six months I was able to function. I had full time caregivers before that for 3 & 1/2 years because my airway was collapsing and getting stuck 5-6 Times a day. I was so weak I could not take off cap on toothpaste. After one year on biologicals I was able to start driving occasionally. In the last year I have had to switch to new biological since one I was using quite working. Have a lot more damage to airways because my inflammation was so out of control. If I can get inflammation under control I could be a candidate for trachealbronchialplasty. Just had second infusion of new medication praying it will work.
Do you already have a diagnosis? How long did it take you to get it?
I was officially diagnosed in 2001. Was being treated for asthma and chronic bronchitis before then. So 7 years on TBM and 12 years on RP that caused TBM.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Pulmonologist Cardiologists Rheumatolgist Internal Medicine. Pulmonologist was the one that helped me get diagnosed.
What has been the most useful thing for you so far?
CPAP, biologicals and breathing treatments.
What have been your biggest difficulties?
Keeping my airway from getting stuck.
How has your social and family environment reacted? Have your social or family relationships changed?
My family was not very supportive at first because no one knew what was going on. After diagnosis they where a lot more supportive. My social life has changed dramatically. I used to be very outgoing and outdoor type. I have been hospitalized over 50 Times and finally gave up outdoor activities. If I am not feeling 90% I will skip family and social functions. I avoid crowds because I catch everything. A common cold takes months to recover from.
What things have you stopped doing?
Gardening, fishing, working, socializing, volunteer work and traveling.
What do you think about the future?
I know that with sever TBM you are always one episode from being hooked up on a ventilator. I try not to think about that to much. I try to concentrate on my family and enjoy the little things. I thank god for my family everyday.
So far, which years have been the best years in your life? What have you done during them?
Since being sick I would say 2007- 2016. We where able to take a few trips as a couple and with family. I was able to get out of house more. Was some what more active while I was in remission.
What would you like to do if you didn’t have your condition?
Travel with my husband and work in my gardens and help around the farm.
If you had to describe your life in a sentence, what would it be?
Limited by more bad days than good but hoping new meds will put me back into remission.
Finally, what advice would you give to a person in a similar situation?
Find doctors who listen, treat you with respect, and understand your disease process. I stayed with doctors that where unwilling to figure out what was going on with me. The delay in diagnosis caused a lot of airway damage.
