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5/9/2016 Latest post:
Brandon was diagnosed with Cystic Fibrosis (CF) when he was 2 years old. Although I dont know much about what they all went through in his younger years I have heard many stories :)
I met Brandon in the end of 2001. I had actually heard of CF before we met and had read a few books on it. Why? I dont really know. I have always loved to read but normally these were not books I would have read. I believe God was preparing me in a way for Brandon. We dated for a little over a year before we moved in together. At that time I still only had a very small look at what his daily routine actually consisted of. At the time we was not very consistant on doing his treatments and nebulizers so that may be why.
The first time I went to a dr. appointment with him he was still doctoring at the U of M in the cities. That was his last appointment there and he transferred to Rochester.
A "normal" day for Brandon would consist of (but not limited too)
nebulizers (3-4 times a day) these take 20-30mins each
pills (close to 60 a day) (no this is not an exaggeration) 8-10 every meal to just digest the meal and 4-6 with every snack
Vest treatments: 3-4 a day (or hand therapy if he preffered) 30-45minutes each
-if he didnt want to do a vest therapy he had the option of exercise.
he wears oxygen at night, and during the day if he is sick
he does feeding tubes at night to keep his weight up. Before the feeding tube he would lose 20-30lbs whenever he got sick he would look like a skeleton. It took us almost 2years to convince him that he needed to get one. After a few months he will tell you its one of the best decisions he made.
He also had to make sure he at 3000 calories a day or more. . the goal was 5000 but his tube feeds normally covered 1500 calories for him while he slept.
CF is a disease where he was always sick, he just never looked sick. That was probably the hardest for me to convey to people. To tell someone he was in the hospital and try to explain that he was sick was difficult if they didnt understand the disease.
After transplant he will still take many of the same pills he took before, and now many more.
He has a long way to go, but he is a fighter and he will get there. :)