Monday, December 15, 2014

I'm going to a CF center for the first time in over a year!

I had been so distracted lately by this pregnancy that I forgot about the fact that I still have a life threatening disease. I didn't start feeling real worry until I found myself getting out of breath doing simple tasks like picking things up off the floor or walking to other rooms in our apartment. My body isn't just my body right now, I'm sharing it with Willow. I expressed my concern to other CF moms and learned that I may have to be on oxygen during the pregnancy but I'm hoping that isn't the case.

I lost my health insurance a little over a year ago and just got it back because I am pregnant. I applied for it twice over the year and a half that I went without it and got declined twice for reasons that weren't made clear. I wouldn't have lost it in the first place, but my mother was angry with me so when something from my health insurance came in the mail that simply needed to be signed and sent off, she led me to believe that she would sign it but failed to do so. I now have health insurance and can see all kiiiiiinds of doctors if I'd like. My medicaid chose one for me by location closest to where I live so the other day, I went. I was shocked to find out that he had absolutely no idea what Cystic Fibrosis even is. CF is the most common genetic disease in Caucasians and he had no idea what it is. Several times during my appointment with him he made it a point to let me know that I ''look'' fine. Thanks, Doc. Great thing to tell someone who is fighting an invisible disease. I left his office frustrated that I had just wasted an hour for him to basically tell me he doesn't know what to tell me because he is not a pulmonary doctor. I understand that his job is to treat things as simple as the common cold, but I at least expected for him to be able to refer me to an adult Cystic Fibrosis center. I was just shocked. He said ''See you next time'' as I was walking out and I turned to my sister when we got outside and said ''Uh, there won't be a next time.'' This is my health we are talking about. I don't have time to be seen by a doctor who got all of his CF facts off of Google.

Because I did not have health insurance for over a year, that means that I have not been seen by any type of doctor. (Minus two trips I had to take to the E.R for coughing up blood) Cystic Fibrosis doctors, included. Which is very, very bad. There could be all kinds of things growing inside of my lungs that I don't even know about, but that's all about to change!

Today I called my old Cystic Fibrosis clinic and they were very pleased to hear from me. I explained my situation and they expressed deep concern and in a matter of just ten minutes, I had an appointment set up at my local adult CF center.

I'm a little sad that I will be attending a new clinic for adults as opposed to being treated at the children's clinic I was treated at ever since I was diagnosed at age 2, but being treated at a new clinic is way better than not being treated at one at all. I can't express the relief and excitement I feel that I will have a team of doctors by my side again making sure that every step is taken to ensure that I am healthy. I should have never lost that. But what is important is that I got it back. February 3rd is my first appointment and I am seriously counting down the days! The best part is that my same CF doctor will also be my primary care doctor so I won't have to worry about explaining my disease to multiple people and then hoping that the correct measures are taken, I will be in the best of hands.

I am so appreciative of my doctors at my old clinic who helped me so quickly and I'm looking forward to meeting my new ones and growing a relationship with each of them!

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