I will be 39 in October. I am a homozygous DF508. I wasn't diagnosed until I was 18, though I suffered from different health problems. For the most part I was pretty healthy, stayed athletically active, being the only girl among four boys. I did have two separate sinus surgeries at 12 and 15, but still my Cf wasn't discovered. I tried the treamtments for a few months back then, but felt sicker than before, so I kind of dropped everything. I still suffer from the psychological aspects of not knowing for all of those years. I worked full time up until I was 32. At that point I started doing albuterol with a nebulizer. On a fluke I got fired from my job, and moved back in with my mom. Upon getting a new job, I got really sick and had to quit after a month. I decided to go ahead and get Social Security, feeling unable to financially take care of myself. It took me three years of fighting with the great help of Beth Sufian, before I got my SSecurity benefits. I've been doing the Tobi 28 day on/off deal, pulmozyne, hypertonic saline lately. I have cultured psuedomonas and staph, but no cepacia or mrsa. Most of my problems now are mental. I recently took myself off of antidepressants gradually, having taken them for six years. I found they were giving me problems going to the bathroom. I started taking the drops of oregano oil a month or two ago, and feel a good difference. I also started taking the guaifenesin two weeks ago, and feel a great improvement from that. I've been walking everyday for about 45 minutes. I'm starting to think a parttime job would be manageable now. I only went into the hospital for a tuneup once back in the beginning of 04, so I am in mild stage right now, I'd say.
I have a 34 year old brother who also has CF. He found out about a year after me about his CF at the age of 15. He was on and off Social Security. At one point in working for Dominos, he got inside an oven and cleaned it with undiluted chemicals. He thinks that really shot his lungs. He was in and out of hospitals, and finally last October, he received his lung transplant. His progress has been excellent, and he is a new person. He is also homozygous Df508.
Now, my older brother had a boy in April of 2005. Beforehand he and his wife were tested, but found that they weren't carriers. Lo and behold after the baby was three months old, having difficulties thriving, always crying, and diagnosed with acid reflux, he was finally diagnosed with Cystic Fibrosis also. At first they could not locate his mutation. They did an extensive genetic blood test and found that mom had D3856, which is a novel mutation. But for some reason, the baby did not carry the Df508 mutation. Finally, they decided that either the baby had a spontaneous mutation, or my older brother had CF also. He was always the most athletic and physically fit one in the family, bicycling up to 50 miles at a time. They did a sweat test recently on him and he had 57 in one arm, and 53 in the other. So they told him he has CF also. It's all so very confusing, he said even the doctors aren't quite sure of what's going on. But he will get tested again in the future and see what is going on.
In the meantime, my mom, an avid smoker for over 30 years but quit 3 years ago, was diagnosed with emphysyma last year. Now, I am thinking that she really has CF also. She's suffered through the years on and off with bronchitis, but still works at the age of 63. She is the toughest woman I know. I believe her lung capacity isn't as good as mine, but she still works full time. She sleeps with oxygen, only because the doctors gave it to her, and gets mad that they would want her to not work anymore. She says she needs to work. She also doesn't really want to know if she really has CF, but I do as well as my brothers, so we will probably have to make her get tested.
For many years, I was allowed to live in what people call the denial of the disease. I had trouble thinking of it that way, because I felt like I was being blamed for something. Instead, I chose to think that my disease just didn't start to develop a daily need for treatments until a later age. I worked through colds and didn't go to the doctors and got over them like everyone else. Finally at 32, when I could no longer clear my lungs out on my own, I went to seek help. Still it wasn't until three years later, that I started taking my treatments regularly. I had a strong contenance like my mom and also because of the trauma of my growing up years, had always had a problem going to a doctor or seeking help for my cough. In high school, they would kick me out of class everyday because of my cough. My mom would take me to the doctor who never found anything, and then verbally berate me for causing problems, so to speak. I walked around for two years with deep bronchitis or pneumonia in high school with no treatment. They had me believing that I was making myself cough for some unknown reason. A year after high school, on a mission to mexico trip with my church, I sat down with a girl from the church who had CF, and asked her what kind of symptoms did she have. As she spoke, I knew that what I had been looking through every encyclopedia, every medical symptom book for my whole life was the same thing she had. We returned to the states and I received a sweat test from her doctor. The doctor seemed really pained to tell me of the diagnosis, but inside I was jumping for joy, finally I was legitimate. My parents spent many years feeling so guilty that they didn't push more for better doctors. My mom, I think will always feel guilty.
My o2 sat is from 95-97, so my lungs are still in pretty good shape. I didn't do anything for years treatment wise, but watched as my younger brother did it all, including being on oxygen 24/7 the last two years or so. I was always the healthy one. But now I think I just didn't feel that I had the right to acknowledge that I had CF. I still struggle everyday in speaking up for myself if I don't feel well. My brothers excellent health now has got me on the bandwagon, striving to improve my health. I don't like feeling that I am the sick one now. I never took that into consideration when we all hoped that he would get a transplant and pull through.
I do feel grateful that I did not find out until a later age. The first 18 years was hell, but it gave me a strength to keep pushing myself, and not let CF be an excuse. But I do feel envious that I wasn't allowed at a young age to feel that it was okay to have CF. That's the only thing that I would change.
Michelle 38w/cf
