- CASE FILE
I am now 21 weeks pregnant with Pulmonary Alveolar Proteinosis. I was diagnosed at age 23 and treated but there's no cure or certainty.
ABOUT THIS CASE FILE
At 19, I had a scan after a roll over car wreck and they saw spots on my lungs but never followed up with thinking it's just bruises considering the recent trauma. I went through college slowly getting more weak and sensitive to the weather. Humidity and cold weather would cause me to be in a lot of pain and not able to breath. I blew it off thinking it all came from that wreck. At the end of college, I was 22, I got sick at work and was taken to the ER thinking my gall bladder needed removed but instead for them to find growth but I was tender to the touch on my lung area. I was given a pulmonologist and he narrowed it down to 2 possibilities by just looking at my CT. It was either sarcoidosis or Pulmonary Alveolar Proteinosis. I had every test and it lead to an open lung biopsy that I struggled to heal from. My lung kept collapsing and now I'm completely numb on my right side but still feel sharp pains in my lower ribs. Doctors in Springfield, MO dont usually do surgeries like that. That Christmas I was diagnosed with Pulmonary Alveolar Proteinosis (PAP) but the thought is mine is genetically passed on from my parents being carriers. I remember crying and the doctor was like "But that's good. You'll live past 30 now for sure with proper treatment." PAP is a disease where your lungs produce too much of the cleaning protein and your white blood cells can't keep up or your white blood cells dont clean the protein and it builds up over time. I am one of the youngest cases ever seen. And there's not much research in the US currently. I follow an international page on Facebook and I'm still one of the youngest and most developed later in life. The disease itself is so unpredictable in onset and if your body will suddenly begin working properly. Most people aren't genetic cases either. But as of right now, there is no cure, just a barbaric treatment that I had to go to St Louis for. I got the whole lung lavage in St. Louis a year later. Which seemed like forever since working in a kitchen really aggravated the symptoms. A whole lung lavage is where one lung has straight oxygen going to it in a tube and another has warm saline solution. Then they beat you basically to agitate and "scrub" your lung and drain you. The process is repeated until the solution comes out clear. Both of my lungs were washed 9 times. And I felt fine after. I stopped breathing the first time and woke up via CPAP. The second time they woke me up right as the tube was pulled out. Both were equally rough, but within a few hours I was up and moving around like nothing happened. I was home within 4 days. As time went on I felt it coming back. This past May I went in for a check up and my doctor showed me my CT scans and he was a bit worried, especially now that I'm pregnant and no one knows exactly how my body will handle it or if my child will have it. My OB was mean about it and told me that I'm selfish for trying to bring a child into this world that could possibly be like me. No one ever told me I shouldn't have children along the way. I thought about not having children, but from what I understand that person would have to be a carrier as well. I'll have every test done on this child just so I know what to expect. I dont want them to have to be cut on like I did. And I hope I dont end up on bedrest. Right now, I'm 21 weeks pregnant and my body is in so much pain. I got a cold in the middle of summer and my lungs feel like their cramping up. Plus my oxygen level is lower than what my OB would like. I would mainly like people to know about this disease. It's very rare. I think maybe 42,000 people in the world have it.