Name : Brad Johns Fibro
Please share your cystic fibrosis diagnosis (Include age, how you felt at the time of diagnosis, how was life before and after diagnosis)?
I was diagnosed at 3 months so I have never known what it was like to be normal.
Once you realized you had cystic fibrosis did you change anything (did your goals change, views on life change, did you avoid certain things)?
I don’t think I really understood until I was in high school. I just thought that it was part of my life. I wasn’t really sick while I was growing up until I got into high school. I missed over 180 days of school over the 4 years of high school. My senior year I was told I had contracted cepacia pseudomonas. I was the 2nd person in the state of Mississippi to contract cepacia. I still have it. Currently, I can’t get rid of it. But it doesn’t cause me many problems fortunately. At that time though I remember I was very scared. I had a bunch of doctors come in and talked to me and my family. That had never happened before. They told me that I could not visit any of the other patients and that I would have to wear gown, mask, and gloves if I were to leave my room at all times. It was at that point that my view of life changed forever. Once other CFers found out that I had this stuff they avoided me like the plague. So my life for the most part has been lived in isolation from others with CF. It wasn’t until I started trying to find a way to pay for a doctorate degree that I started seeking out others with CF.
What has been the biggest challenge for you dealing with cystic fibrosis?
I think it is the mind games that this illness can play on you. Knowing that you are eventually going to die from this stuff is a hard pill to swallow. That is why I try to stay on top of things all the time. I have a wife and 3 children. I want to live as long as I can so that I can experience as much as possible with them.
Please share with us any triumphs you have accomplished in the face of cystic fibrosis?
My 3 children (Josh, Justin, and Lyzzie).
Hero of Hope (Genentech Pharmaceuticals)
Teacher of the Year
McLaurin High School Teacher of the Month
Channel 16 (local TV station) Teacher of the Week
Doctorate Degree in Educational Leadership
Appeared on TV and in the newspaper multiple times for CF and non CF related events
Mississippi College Distinguished Alumnus of the Year (2013)
Writing Team of the 2007 Mississippi Mathematics Framework
Mississippi Professional Educators (MPE) board of directors
Mississippi Council of Teachers of Mathematics (MCTM) board of directors
Appeared through video at the Mississippi CF education day and spoke about having children through IVF
Outstanding teacher award!!!
Since you have shared with me that you were able to have children what struggles did you face on this path?
First the cost is overwhelming. We immediately started trying to have children once we were married through IVF. It was hard to pay for all that this entailed and also pay for my CF needs as well. Second, each time it did not work, the emotions that went along with finding out were really hard. Finally, I don’t think we knew what we were getting ourselves into when we found out we were having twins the second time that it worked. It was and still is hard at times. The first 2 years were the worst. Between taking care of kids and taking care of myself it was exhausting.
How has becoming a father shaped your life?
I think many people do not understand that being a father and having CF is very tough. Please share any thoughts you have on this topic. (How is treatment time before and after becoming a father? How did you let your children know about CF? If you had to give advice to any CFer on becoming a parent what would that be?) It’s still hard at times. Making sure that everybody is taken care of and providing the finances to make sure that they have their needs provided for is hard. CF costs for my family have skyrocketed in the last couple of years. Normal people don’t understand how much our disease cost. The cost of our disease never goes away. We never catch a break from the cost. People with other diseases such as Cancer are never sick until they are diagnosed. My CF costs have always been there and will always be there until I die.
My treatments are very different now as compared to when we did not have children. I have to get up much earlier to start treatments. Treatments start each day for me around 4:15 a.m. each day. I use to be able to do them as late as 5:30 each day before we had kids. That extra hour of lost sleep takes its toll on the CF body. Now that my children are in school we have homework each day which makes the evenings more complicated as well. By the time we do homework, get everyone fed and bathed, its time for bed so there is not much time for anything else.
My oldest has known about my disease for several years. My twins who are 7 know it only in name. When they get to an age where we feel that they are able to understand we will tell them about it just as we did Josh.
If I had to give any advice to those seeking to be parents it would be to find out as much information as you can before starting IVF. When we started trying through IVF 15 years ago now, there was not much information out there. We were pioneers back then. I was the first male in the state of Mississippi with CF to have a child through IVF.
Brad's three children!
Were there things you wished your parents did differently as you grew up with cystic fibrosis (Example: more freedom to be in charge of your treatment, speaking at doctor visits, life pre diagnosis/post diagnosis, not allowing you to do certain things because of CF)?
No my parents let me lead a normal life. I played football, baseball, and was in the band in High School.
You have seen a lot of things as I call you a CF veteran. I assume you have seen a lot of changes in the early days of CF and where we are at now. Can you describe what it was like in the early days of CF and where we are now and where you think CF is going?
I remember my parents putting me on a table laying upside down and pounding on me for what seemed like hours everyday when I was little. I remember my parents putting my pills in a spoonful of applesauce so that I could swallow them.
These days there are so many advances in medications. It takes less time to take these drugs and they are more effective than ever before. I am hoping that during my lifetime we will see a cure for our disease.
This question floats around a lot. If you could be born without cystic fibrosis would you? What has CF taught you?
At this time I would have to say no. Having CF has taught me to rely on my Lord and Savior Jesus Christ for everything. He provides everything we need. There is not a day that goes by where I don’t constantly have to say o.k. God how are you going to work this out this time? You have to take care of this. I am putting my trust in you. I am totally dependent on God for everything. He provides for us!
I talk with a lot of newly diagnosed parents to CFers. Many of these parents feel the world is crashing down on them when they hear the two letters CF. What would you tell a parent who has a newly diagnosed CFer?
I would tell them that it is not the death sentence that it use to be. We are able to lead fairly normal lives and are able to accomplish much during our lifetime.
I have found that there are a good amount of CFers who are worried to tell their boyfriend/girlfriend they have cystic fibrosis. As a CFer who is married what advice would you give to a CFer who is afraid to disclose they have cystic fibrosis in a future relationship? I think that it is important to be upfront with people. I remember telling my girlfriend (later became my wife) very early in our relationship that I had CF. I thought that if we were going to get married then she needed to know. I didn’t want her to find out and then leave because she could not deal with the situation.
What advice would you give anyone who is battling cystic fibrosis today?
Never give up and never stop taking care of yourself properly. Always work hard to stay as well as you possibly can.
I am so glad Brad took the time to give us his perspective when it comes to having CF and also being a parent. I can tell you from my own experience it is VERY TOUGH! The biggest part like Brad said is fitting in the time for you and your CF. Treatment times are all different for me especially on the weekends and evenings. There is NO schedule when you are a parent for your CF. You no longer are selfish on you it's on the family now. That is tough and I know from first hand experience its beyond challenging. As you read, Brad wakes up extra early not to go fishing or hunting but to make sure he is getting in those needed airway treatments. That to me is saying a lot about his commitment to his health and family!!! For all those out there that do not have to wake up an extra hour earlier to start their day just imagine this. This is something that Brad does every day and many of us CFers out there as well. We do this for more tomorrows with our loved ones.
When I read Brad's accomplishments I just cannot even think of the right words to say but CONGRATULATIONS!!! Even people without CF will be jealous of you Brad. I can think of one word that describes you and that is determined. I bet the students you teach are really benefiting from a wonderful teacher and a spirited person. Not only are your students benefiting from your determination but I could imagine that your wife and children are witnessing a wonderful human being day in and day out.
Thanks for sharing your life with us all Brad!! You are a true inspiration to many of us out there battling cystic fibrosis. I know that if you had to run through a wall for CF you would do that. I wish you much more success throughout your life Fibro!!