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Ever since I was 10 years old and first heard the doctors whisper about how bad my lungs looked on x-ray I knew there would be issues. They warned me it would affect me when I got older. When you are 10 you think old is 80… I was in my 30’s when problems started to develop. Couldn’t exert myself without stopping to do some pursed lip breathing to try and oxygenate, problem was exertion wasn’t walking across town or up a flight of stairs.. Some morning’s exertion was rolling over and sitting up in bed.
Cold weather affected me greatly, coughing til I threw up a lot of times. I went to countless doctors and pulmonologists and had pulmonary rehab and a wedge resection to biopsy. This little fungus called histoplasmosis really did a number on me. It led to countless bronchitis and pneumonia and in the end pulmonary fibrosing in my lungs.

For the past year and half I have struggled with severe edema in my feet and legs. They do not know the cause. They increased my meds to the point I am taking 160 mg of Lasix and 100 mg of Aldactone every day, it’s dangerous as it depletes other minerals and leaves me with severe cramps at times.

I was on steroids for almost a year and gained 100 pounds, I have lost 60 of them but the last 40 is stubborn and seems to be the fluid that I just can’t quite get rid of. It’s not unusual for my weight to fluctuate by 15 pounds from day to day due to the fluid I produce. I’m restricted to 1.5 liters of fluid a day and it doesn’t help.
My last doctor appointment the pulmonologist looked me right in the eye and told me I was dying. He ordered a sleep study and I had that done, they woke me three times to check if the pulse oximeter was working then they stuck me on oxygen.
I have a vascular ultrasound tomorrow of my legs and I have been ordered to do a PT/INT to check clot time for a baseline on Coumadin again.

All in all it’s been pretty distressing week. I have high hopes that they make actually figure something and start reversing things because I really want to prove my doctor wrong. After all they told me at 10 I was terminal and I’m now 42. So I have a decent track record of confounding them.