It Took 4 Docotrs And 30+ Tests To Diagnose My Rare Disease



Before getting my diagnosis, it was really scary, because I always thought each breath could be my last and I might die in a few years because I was losing lung function rapidly. 

Fortunately, after my diagnosis, I was connected with a great pulmonary specialist who assured me my condition was treatable. This was the first sense of hope I had in almost a year, since my health journey began. 

I was immediately put on immunosuppressive drugs and sent to pulmonary rehab—it was especially important to keep an eye on my lung function because if I’d lost even a couple more percentages, I would have to be on oxygen full-time.

The pulmonary rehab helped me to not only learn more about the disease but also gain a better awareness of my body. The doctors were trying to do everything they could to keep my lungs at the point they were. While they will never recover, we were trying to keep things from getting worse—which has proven to be successful over the years. 

It’s been nearly a decade since my initial diagnosis. After sticking to the proper exercises and supporting my lungs, I’ve now been able to stay off my medication for three years without decline. For that, I’m utterly thankful. 

I’ve also been able to incorporate more exercise into my routine to help support my whole body health. Since my disease causes weakness in my muscles, I have to go to the gym to build up strength. I also push myself to do a certain walking routine and move my body—I try really hard to do what I can to stay active.



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