breigh.maples's interview
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How did all start?
Coughing up blood, short of breath, weakness, extreme fatigue
Do you already have a diagnosis? How long did it take you to get it?
I was misdiagnosed in the hospital with pneumonia first and Lupus but after being transported to IU Methodist within 2 days they diagnosed me with Goodpasture Syndrome and started me on a gram of steroids and chemotherapy right away
For what medical specialties have you been treated? What has been the most useful specialty for your?
Rheumatology and Pulmonology have been amazing to treat me and figure this all out. All of the ICU doctors have worked hard on my case to figure out the best possible treatment for me and have been so patient explaining my options and so i understand before we move further
What has been the most useful thing for you so far?
Steroids and chemotherapy have been life savers and the fantastic team of doctors that get back with me asap if i call with questions or concerns
What have been your biggest difficulties?
Dealing with the medication side effects and regaining my normal every day strength back
How has your social and family environment reacted? Have your social or family relationships changed?
Yes i am not able to be a reliable friend like i used to be. I cancel on plans because of my illness when I’m having severe symptom days and can’t make it out of the house but my body has to rest. My family and friends will make time to come see me though if I’m up for visitors but they are understanding they need to come to my house if i am not up to getting out
What things have you stopped doing?
Playing sports, taking my dogs on walks, yard work, not as many household chores
What do you think about the future?
I’m blessed to have a future to look forward to after all of this because they didn’t think i was going to make it. I am hopeful the doctors eventually will narrow down a cure or medication treatment that will work for my rare disease case so i can live a less stress free life and get back to my normal self
So far, which years have been the best years in your life? What have you done during them?
Probably ages 15-21 when i was able to play sports all the time and go as i pleased with no restrictions or limitations because of my pain of illnesses. I could hang out with friends and stay out late without getting tired or walk and not need to sit down for a break and rest between activities. I felt healthy and was very upbeat and an active person.
What would you like to do if you didn’t have your condition?
I would like to just be a normal 26 year old honestly and be able to take my dogs on walks, play on my co-ed softball team with my fiancé (where we met) and my family and friends. I want to be able to drive in the car on my own and not have to worry that i may get tired if i go too far so I’m usually always having someone accompany me. I want to be able to visit family and friends more often and not cancel plans and travel more, go hiking with no shortness of breath and i miss being able to work because I’m a busy body.
If you had to describe your life in a sentence, what would it be?
If you didn't live every second of your life with a smile, consider yourself wasting the most precious and prestigious gift.
Finally, what advice would you give to a person in a similar situation?
Stay strong, never give up and stay hopeful. Fight for your life because there is so much in this world for us to still experience and you’ll actually come out realizing how much you took for granted and view life in a brighter perspective after what you have gone through to get here.
