Wee's Quest for New Lungs
Donation protected
My name is Weatherly, aka Wee. I’m 40 years old, have Cystic Fibrosis and need a double lung transplant.
I grew up not knowing that I have Cystic Fibrosis (CF). I played sports all throughout high school. After graduation, I joined the Air Force. At the age of 20, I got married and 2 months later was diagnosed with CF. I was honorably discharged from the military with no medical benefits because CF is a “genetic disease”. At that time, I had 76% lung capacity and through the years, I’ve become a statistic, losing 2%-3% per year since.
I always fight going into the hospital. Nobody ever wants to be in the hospital, especially for 2-6 weeks at a time. Sometimes I go straight to ICU so they can watch me closer there. I have to get antibiotics that I’m allergic to because those are the ones that help decrease a certain bacteria that I carry. Unfortunately, this extends my hospital stay.
Because my pancreas does not work properly I take enzymes when I eat to help my body digest the nutrients in food that my body doesn’t break down on its own. I also have CF Related Diabetes (CFRD). I’m on a 3,600 calorie diet/day. So I basically eat everything that I like, high fat, high carb diet. I have never had such a hard time with a diagnosis as I did when I was told I have CFRD. It broke me.
Unfortunately, my body doesn’t make any or makes very little prednisone on it’s own, so I take prednisone daily which makes me, “prednisone dependant”. I’ve had a lot of problems. A short list includes:
Cataract surgery in both eyes at the age of 33
Multiple sinus surgeries
Osteoarthritis
Osteoporosis, bone density is affected
Gout, not caused by prednisone, but by the enzymes.
The drug Orkambi was introduced to the CF world in July of 2015. I was scared to start taking it knowing it was my last chance for a more “normal” life!! I was on it for 3 months and kept getting sicker and sicker. I lost 11% lung capacity from my 43% and 20 pounds. I was down to 103 pounds. I felt like I failed everyone who had hoped with me. It’s been about 2 years now, and I still haven’t recuperated the lost lung capacity or weight, that I lost in those 3 months. It was now time to make the decision that, I knew one day I would have to make, and I finally said yes to having a double lung transplant.
I’m doing all the pre-surgery care at 33% lung capacity. I’m now on oxygen, which takes awhile to get used to because I was so good at hiding CF in my everyday life. Now, there’s this oxygen machine that everyone can see. Letting people know that I have CF hasn’t been easy. The staring really makes me uneasy, like somehow I’m more vulnerable. I like the fact, that some people, ask questions.
I’ve done the hard part. Now I just need one last push to get me where I need to go… Thank you all for your support, I wouldn’t be where I am today without you!
FYI: All monies contributed to Wee's Army, on behalf of Weatherly Baum, will be sent to Cindy Pitts. Cindy is Wee's Army Treasurer and will disburse all funds raised to the appropriate parties for payments pertaining to surgery expenses.
I grew up not knowing that I have Cystic Fibrosis (CF). I played sports all throughout high school. After graduation, I joined the Air Force. At the age of 20, I got married and 2 months later was diagnosed with CF. I was honorably discharged from the military with no medical benefits because CF is a “genetic disease”. At that time, I had 76% lung capacity and through the years, I’ve become a statistic, losing 2%-3% per year since.
I always fight going into the hospital. Nobody ever wants to be in the hospital, especially for 2-6 weeks at a time. Sometimes I go straight to ICU so they can watch me closer there. I have to get antibiotics that I’m allergic to because those are the ones that help decrease a certain bacteria that I carry. Unfortunately, this extends my hospital stay.
Because my pancreas does not work properly I take enzymes when I eat to help my body digest the nutrients in food that my body doesn’t break down on its own. I also have CF Related Diabetes (CFRD). I’m on a 3,600 calorie diet/day. So I basically eat everything that I like, high fat, high carb diet. I have never had such a hard time with a diagnosis as I did when I was told I have CFRD. It broke me.
Unfortunately, my body doesn’t make any or makes very little prednisone on it’s own, so I take prednisone daily which makes me, “prednisone dependant”. I’ve had a lot of problems. A short list includes:
Cataract surgery in both eyes at the age of 33
Multiple sinus surgeries
Osteoarthritis
Osteoporosis, bone density is affected
Gout, not caused by prednisone, but by the enzymes.
The drug Orkambi was introduced to the CF world in July of 2015. I was scared to start taking it knowing it was my last chance for a more “normal” life!! I was on it for 3 months and kept getting sicker and sicker. I lost 11% lung capacity from my 43% and 20 pounds. I was down to 103 pounds. I felt like I failed everyone who had hoped with me. It’s been about 2 years now, and I still haven’t recuperated the lost lung capacity or weight, that I lost in those 3 months. It was now time to make the decision that, I knew one day I would have to make, and I finally said yes to having a double lung transplant.
I’m doing all the pre-surgery care at 33% lung capacity. I’m now on oxygen, which takes awhile to get used to because I was so good at hiding CF in my everyday life. Now, there’s this oxygen machine that everyone can see. Letting people know that I have CF hasn’t been easy. The staring really makes me uneasy, like somehow I’m more vulnerable. I like the fact, that some people, ask questions.
I’ve done the hard part. Now I just need one last push to get me where I need to go… Thank you all for your support, I wouldn’t be where I am today without you!
FYI: All monies contributed to Wee's Army, on behalf of Weatherly Baum, will be sent to Cindy Pitts. Cindy is Wee's Army Treasurer and will disburse all funds raised to the appropriate parties for payments pertaining to surgery expenses.
Organizer
Weatherly Baum
Organizer
Phoenix, AZ
