Brandon's First Blog

For everyone that has been waiting for me (Brandon) to write here I am. Sorry it has taken me away. I have been through a lot the last two months as I'm sure most of you know. Let's see where should I begin...

I was born with Cystic Fibrosis and my doctors found it when I was 6 weeks old. So as a baby I was very sick. At the time my birth mom and dad aren't able to take care of me nor did they have a car to drive me two hours away each time I needed a doctor. They tried there hardest but at the end they knew it was best for me to go into a better home so I could get better care. So at the age of two I was adopted. My adopted family has taken great care of me since than. I love them and I couldn't have ask for a better loving and caring family. My family didn't even know what Cystic Fibrosis(CF) was but yet they opened me with open arms. My mom was the best. She took great care of me. Don't take this wrong my dad was great as well. He was the one working and providing for the family everyday. I would wake up sick at 2AM and walk into my parents bedroom and tell them.  My mom would pack and be ready within 30 mins. We would then drive two hours to the hospital and in most causes I would be admitted for a week or two with mom never leaving me until I turned 18 years old. Even than she didn't want to leave me but I told her there was never needs for her to stay. She would still come stay with me on the weekend cuz hospital are dead on weekends.  I had great nurses and doctors. Some of witch are still great friends of mine. Oh before I forget. I was born and raised in SE Kansas in a small town of 9k and went two hours away to Kansas City, Ks to KU Medical Center. The hospital I went to for over 20 years.

When I hit about the age of 14 I was getting sicker and sicker. I was doing breathing treatments, 45 pills a day, in and out of the hospital. Around the age of 16 I wasn't eating as much as the doctors wanted so I ended up getting a feeding tube. They wanted me having around 6,000 calories a day. So with the feeding tube I was getting 2,000 during the night. From there around the age of 18/19 I was on 24 hours a day oxygen, doing feeding tube, 2 hours of breathing treatments, in the hospital more than I was out and my energy level was very weak. I would wake up some morning to take a shower and once I got out I would be back in bed for most of the day.

So I knew I was getting bad. So my mom and I drove to St. Louis to see about a double lung transplant. I'm not going to go into details on all of it but long story short St. Louis called and said they would list me. So I started raising money to help with the living cost and everything for me to stay in St. Louis. Three months after raising money mom and I moved there and I was listed. We met some of the greatest people while waiting for the call for new lungs. Thoughts people become family. After waiting about 3 1/2 months I started to get very sick. I was put into the hospital and they had to put me on life support. I was out for a week since they had the tube in my mouth. After a week they had to take it out and put in a trek through the neck. In that month and a half I learned to talk and eat around it. I was also walking the hallways. The nurses there told me I was the first one to do that in over 6 years there.

I won't go into a lot of detail in this post but I am a fighter. I don't and won't just give up in life. Life is to short for that. I live everyday like there is no tomorrow. I'm sure you're wondering how do I do it? My mom always told me you're going to be ok. We're going to get through this together. (as she would be holding my hand). But my thought was "ya" I might have it bad but there's someone else out there that has it worst than me and I was still happy I was alive. Like I said you have to be happy for everyday you have on this earth. "You never know what tomorrow could bring" And I also think that everything happens for a reason.
So after being on life support for 3 weeks (I think) we go a call they FOUND LUNGS. I was in tears, Mom was calling everyone she could as she was also in tears. tears of joy. Tears of her knowing her baby boy was going to be ok. The wait was over. They got me down to the OR. I signed a few things and than a doctor walked in. It wasn't going to be good. I could see it in his face. He said the lungs aren't any good. So mom and I was crushed. They moved me back up to my room. It wasn't long after that it was my birthday. March 9th. I was turning the BIG 21. In the hospital isn't the best place for birthdays, Christmas and other Holiday's. But let me tell you I had A LOT of them in hospitals. The nurses always tired there hardest to make it the best but still who ever wants to be in a hospital and let alone on holidays? But anyways on my 21st birthday I had friends decorate my room in a poker Theme. It made me smile. Knowing I had friend like that. So that night a few nurses come in and sing happy birthday to me and then gave me a beer. I'm sure none of you can say you been on life support, in the hospital and had nurses bring you beer on your birthday. haha. It was cool and it made my day. You have to look at everything positive.

March 18th 2010 came. The day after St. Patrick's day. We got the call at 4 AM they had found a match. This time it was different. Mom and I just called a hand full of people and we stayed calm. The doctors finely come in and said its a go. The lungs looked great and they're going to fit and work just fine. I want to say it was a six hour surgery. I came out of it great. The next day they had me up and walking. I was breathing on my own. It was the greatest but also the oddest feeling ever. I never knew what it was like or how it felt to breathe like a normal person. I had to learn how to just let my body do the work itself. I also had to learn how to re-cough, sneeze and do deep breathing. I felt like I was just in a dream. It was a dream that came true. Growing up I never knew I would be this health at the age of 24. Doctors didn't know a lot about CF when I was young. They didn't think I would make it past 5,16, 18 and so on. I thought I would have had to live at home all my life. The new lungs are my life. Without them I would not still be here today. It funny how many people think they have it so hard and then they hear my story and think different. But that makes me happy. I love helping other people. I have people with CF that come to me all the time and ask how I live an everyday life. First of all I don't want people feeling sorry for me. I feel like CF has made me the strong person I am today. I don't let very many things pull me down. I try to think and stay positive as I can. What do you get out of someone feeling sorry for you? Attention? I don't understand why people live an everyday life trying to find attention for themselves. After awhile you're going to stay feeling bad or/and get depressed because you're no longer getting it. I mean don't get me wrong everyone needs a little attention but to try to causes it your only going to start making yourself look bad.

Just hours after Transplant

Since the transplant 3 years ago I have been doing great. No more oxygen, feeding tube, breathing treatments or hospital stays. I do have diabetes and still have to take pills for after care transplant and the CF. I take about 45 pills a day and do shots for my diabetes. That to me is a walk in the park.

I also found out who my donor was and where his laid to rest. His name is Jacob and he is my Hero. He passed away at the age of 16. It's sad he lost his life but yet I'm a believer that everything happens for a reason. Jacob was needed somewhere else. I feel like I'm here to spreed words. I have people come to me for help. I also try to be strong as I can. I'm thankful for everyday. I take care of myself the best I can.

I'll go into more detail about everything later on. I just wanted you to know a little bit about me and I didn't want to over whelm everyone at first. Another thing. I'm not good at spelling or writing. My last year of school was in 9th grade. I went 49 days (some of those being half days) out of 160 days. I was always sick or in the hospital. I think it was the stress of going to school as well. I started travailing after dropping out of school do to my health. I'll get into that at a later time as well.

 As I tell most people after writing them. "Breathe Easy". I never knew what it was like to "Breathe Easy" before my transplant. Try taking two cotton balls and putting them up your nose and that's what it felt like before the transplant. Thanks for taking your time and reading this. It means a lot to Tim and I. I know this blog was a lot but now you know a little more about me hopefully. Breathe Easy Everyone :-)

This blog is for Tim and I to vest, tell our stories,  help others and to do whatever Tim and I feel like doing. If you don't like what you see or you're going to judge us than don't read it. Nobody tells anyone they have to read it. Love us Hate us this is who we are and this is our story.