The Anniversary - Part 3

So yesterday was the day. The 1 year since my last admission to the hospital. Amazing isn't it. A man of 31 with severe CF that can go 1 year without hospitalization.
So the big question, why?
Why do I continue to live while all those around me, even those closest to me, have to die (or is it "Get to die?" That is a question for later). We have the same disease. Why am I different. Is it not enough for me to be different from "Normal" people and have CF. Now I have to be different from CF people too and live beyond my friends and family. Beyond doctors expectations, and beyond my own expectations.

When I was 12, and my cousin had just died, I finally had to go into the hospital, we held out until the end of that year, since my parents were worried about the psychological impact on the rest of the family. I was extremely sick. I spent 20 days in the hospital, and nearly 5 months on IV therapy. I was put on Tobramycin and one other I forget the name of. I spent a lot of time getting peaks and troughs on the tobi levels in my blood. They would shoot all over the place. This was my first experience with near death. I was on 24x7 Oxygen, I used a wheelchair to get most places since I couldn't walk without completely losing breath. It took a lot of hard work, I don't know how my mother did it, working part time(she is a nurse) and taking care of me part time (I did my own care quite often). We came up with a system where she would do my midnight drugs on nights when she didn't work the next day, and I would do them on nights when she did. This was nothing fancy either, these were the hang and let gravity do the work home IV's. Man those seem like the dark ages now.
It took a while and lots of work, but eventually I started getting better. Slowly I got off 24x7 oxygen and just wore it at night. I finally finished my IV meds. We found out I have a bad reaction to tobramycin, for some reason I lose all my white blood cells. So it was the first and last time I would take Tobramycin IV. I also found out that the cool new miracle drug that was released (fortaz) didn't work for me.

Again for some reason I lived... Pulmozyme was released at another time when I was getting worse.
Not only that I was in the study for it, Phase 2 and 3 and after the study, the company decided to allow those that were in the study to continue taking the drug, and receiving it for free until it was released. I was one of the few subjects who showed the greatest improvement on twice a day doses.

My wife and I had been married 2 years and we had just purchased a home. I was getting more and more ill for no apparent reason. My wonderful wife, worked super hard and with the help of many great people she put in our yard that year. A conquest she will never let me forget. That fall I went to a Grand Rounds at the local Children's hospital, it was on CF and Diabetes. It was being presented by Dana Hardin, she wrote the book Managing Cystic Fibrosis Related Diabetes. During the presentation she described nearly all of my symptoms, including unexplained decline in health. After the grand rounds presentation I spoke to her and told her what I was experiencing, but that none of the endo's would treat me because my HbA1c was normal all the time. She explained that she had found that people with CFRD always have normal HbA1c and that it is not a valid test for CFRD. She told me to have my doctor do a glucose tolerance test to see what I did. She also said that she and her husband had decided to move to Utah and she would start practicing in about a month and I could come and see her.
I got my gtt and my 2 hr glucose was 20(normal is 95-110, critical is <30>250). My doctor actually called me at work to make sure I was ok after the lab called him. I was definitely not feeling well and nearly blacked out driving my car. I went into the nearest mc'd's and just sat there in the lobby sucking down jelly packets, hoping to stay alive. The lab I guess never should have let me leave in that condition...
Well, I was treated and began a regimen with Dr hardin. I started insulin and changed some eating habits, and within 3 months I was a new man. I felt better my PFT's were better, everything. 3 months later Dr hardin went back to Univ Texas SouthWestern she had decided that Utah was not what she wanted. But she was around long enough to help me get back on my feet.

Dec 2005, I got real sick. The kind of sick that you don't talk about until a year later or so. There was a week during this time that each night I would pray that my sweet wife would not have to call the paramedics in the middle of the night. And I mean literally pray. I stayed up most of the time because I couldn't sleep. Also I didn't want to ... ya know... not wake up. I had just started a new job and I had no time off. I finally asked my boss if I could go in feb. He agreed. While at the hospital my doctor and I began talking of a study that was just released about Surfers in Australia. Doctors in Australia were looking for any correlation to what made some kids live longer than others, using the CF registry. The only thing they could find was ... surfing. The kids that had the best PFT's and the longest life were the ones that had the hobby of surfing. They at first thought it was the good physical exercise, but then these people were living beyond the runners and the others that also exercised. They finally did a study on salty air... which led to the new 13% saline treatment. I started this treatment when I went in the hospital 1 year ago. I attribute my good health for the last year mostly to the saline. It moves me like nothing else. I love it because it is cheap and easy to make. The drug companies can't patent it, because it is already in use... hehe. The only reason I survived that illness last year is because this saline really worked for me in moving all the crap out of my lungs.

I don't know how to explain it. I don't know why I continue to live while others don't. I am grateful for the time I have had, and I am grateful I have not had to leave my wife. I love her a lot, and she is my greatest motivation for continued health and success. I am glad to be out of the hospital still. But the question of "why" will remain unanswered for now. I will not waste the time that God has given me.

Hopefully neither will you.