I feel like I need to back track more so you will understand my story better as I tell it. As you already know I was born with Cystic Fibrosis I have had an older brother and younger brother both pass away due to complications with Cystic Fibrosis, I have had very good health considering what it could be, I did the usually IV 'clean-ups' at least twice a year, but was able to do anything I wanted to like hanging out with friends, sports, etc... I have known since I was little that I wanted to do hair when I grew up and I did just that I have now been doing hair for 8 years (anniversary next month!) I LOVE LOVE LOVE IT!!!!! I worked at a salon until two years ago, I then got a job at that paid steady (hair can be really unsteady) and was only 20hrs. no weekends or holidays, I did that and then hair out of my house. All until a year ago.
My hemoptysis started really when I was a teenager but it got worse over 5 years ago, it still wasn't as bad as it got now but my doctor didn't do anything about it. So.... Nov. '02 After a spell of hemoptysis I went to the hospital and finally the dr. decided to do an embolization and clot off the bronchial arteries they thought were bleeding. I was so happy that they were finally doing surgery and felt like it would solve everything, well, I went for surgery and little did I know that I barely made it, I was bleeding so much that after one short month of being married my husband was told his wife had 24hrs. to determine if I would pull out of it or not!!!!! I just can't imagine what my husband went through. I did make it through but then proceeded to have a rough couple of months where I ended up having 7 embolizations in 6 weeks! But we made it through and I got better, over the next year I went in a couple times but was able to recover, I believe I had maybe two more surgeries that year. The next year was better, still some surgeries (I mean I had to rack up to 15 somehow!)
The next two years were great! My health had improved a lot and we put in our papers for adoption, I had a great job at a salon where I was building a clientele and that was fun, my husband was making through school, life was good. Now granted I would still get sick, but I would always recover within about a week.
Then all of a sudden came last Aug. so now you are caught up I think. So I came home to recover and as you can imagine I just thought, hey, this one really knocked me down, so it will take longer to recover but I will do it. I never doubted! I had always recovered in the past! Then one week turned into two, and I still wasn't recovering as fast as I normally do, and I was on home oxygen too so it was a little weird for me, I didn't feel as energetic, I wasn't as hungry, and according to everybody my color was awful! actually when my brother-in-law came home from being gone all summer, he came home just a day or two from when I got home he told my husband later that he was scared to even hug me!!!!!! Here is a picture of me and my new little pup Texas, and Chugs, taken around that time, Chugs is in the front and Texas closer to me.
Sorry this one is side-ways
2 comments:
I'm glad you wrote about this, it's good to know what you're going through. I have no experience with this at all, so I'm clueless. You must be a very strong lady!
This is so crazy and scary and all around frustrating and life consuming. So sorry for all you are going through. Makes my life and the frustrations seem a little less. Glad you are sharing and recording.
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