I truly wish there were more people like Megan who reach out to other newly diagnosed parents. Megan states in her interview she has made a true friend in a parent to a CFer. I LOVE this. As many of you know I really enjoy talking with parents to CFers. I guarantee that when you talk with a parent to a CFer they are so rewarded from that conversation. I can bet that my parents probably wish they had a sounding board to go to minus the doctors who actually has been through this disease. The time is NOW to reach out to parents with CFers!!!
Lastly, I think Megan's advice for all of us who are battling CF are words we should all make a part of our daily life. One thing that jumps out at me is where she makes a statement that MENTALITY is key in fighting this disease! I couldn't agree more.
Here is Megan's interview and story!
Name: Megan Lee Mobley (cyster & double lung transplant warrior)
Please share your cystic fibrosis diagnosis (Incude age, how you felt at the time of diagnosis, how was life before and after diagnosis)?
When I was diagnosed I was 5 years old, and what did CF mean to a 5 year old? All I remember was seeing my mother and father cry and the drs running a lot of sweat tests on me. My life before diagnosis I was always at urgent care, after being diagnosed it was breathing treatments, hospital stays and home IVs. I didn’t really feel any different, just that I didn’t understand why I was the one out of all my friends that had to go through it.
What has been the biggest challenge for you dealing with cystic fibrosis?
The biggest challenge was staying on top of my treatments when I became older, because becoming older that meant getting a job, juggling medications, and hospital stays. I lost a job over it. Also breathing became a challenge around the age of 19, which now I am almost 27.
Please share with us any triumphs you have accomplished because of cystic fibrosis?
I always barrel raced even as a young child, I had to stop for a while until after my transplant but im right back at it. Getting a lung transplant is a huge triumph, I was also awarded hero of hope through genetic J
Now that we know you have had a lung transplant, how did you view the world before transplant and after transplant?
My quality of life was not good 4 years before my transplant with a lung function of only 28% I viewed the world the same as I do now, I just have more faith, and more faith in the doctors that treat me, I always said I never wanted a lung transplant, but when you are knocking on deaths door, you re think a lot of things, you do it for the people you love more so than yourself.
What advice would you give anyone who is on the lung transplant list?
Keep your faith, and stay strong, your body can be so weak and they look at you and think you will not make it but its your will, it has to be strong, you have to fight and never give up…no matter how hard you think it is, there are people put there that may have a rougher time. Work out, stay on your oxygen, don’t be afraid, take and do all of your meds!
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)?
My parents were great! I lived a normal childhood when I wasn't sick, and learning from my parents is what made me so strong, they would always reassure me no matter how I was feeling…they treated me normal not like I had a life threatening disease, but they always made sure I did all of my treatments and dressed according to the weather outside J
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?
In my early days of CF they hospitalized more, but always gotten to come home with IVs and my mother always ran .There were no chest vests, no flutter valves, no inhalers just breathing treatments, and manual PT which I think is better anyway. Where we are now I think is great! It gives hope to all the younger generation that may not ever have to have lung transplants because of scarred lungs. They are making medical advancements every day that we do not even know about J
This question floats around a lot. If you could be born without cystic fibrosis would you?. But what has CF taught you?
NO. I wouldn’t be who I am today without CF I would have the knowledge of a disease that a few people only know about surfacely, they don’t know what CF really is. I aim to let that be known! CF has taught me to grow up faster, not take any bull from anyone choose my friends and boyfriends wisely, keep up on my health so I don’t leave the family and friends I love so dearly to soon I love life, even though its been hard at times, I still wouldn’t trade it, I wouldn’t be me.
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 in a committed relationship, what advice would you give to a CFer who is afraid to disclose they have cystic fibrosis?
I ALWAYS told a guy I was talking to about my CF before dating, before I would get hurt, 1) Its not right for them to fall for you and something happens and they had no clue you have CF, and they cant handle it, so they are put in a hard position 2) its not right to fall for them not knowing how they would react the first time you got sick around them.
I have always been upfront even when talking to guys I let it be known, because they should get a fair chance to, but you need to explain your own true definition to them because not all CF is standard text book, so you
must give them the chance to want to be a part of your cf life, its only fair, and if they don’t then, there is someone out there better that will! I know all of this for a fact! J
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. I want to know what you would tell a newly diagnosed parent to a CFer.
I have been talking to now I call a friend since the day her daughter was diagnosed her daughter is 4 now. The earlier the diagnosis and compliance the better!
I have talked to many CF parents and yes they do feel like their world is crashing down CF does not have to be terminal, even though the text definition says it is…no it doesn’t have to be…it’s a hard bumpy road, but you get through those roads, and the CF patient worries about their parents more than the parents, because as a CF patient you know your own body and you have a wonderful support system (hopefully) but you still worry more, or well at least I always did and do, but a lot of children will ask their parents why am I sick and not my sister? That was one of my questions and another one was why did you and daddy make me sick, because I was explained the two dysfunctional genes that both of my parents had to have to have a CF Child.
What advice would you give anyone who is battling cystic fibrosis today?
I would tell them I know it may not seem fair and it isn't, but it makes you the person you are today, just like cancer its not fair either but there is treatment and you could have a way worse disease than CF. Stay strong, mentality is KEY in fighting this disease, work out, eat healthy, drink tons of water, exercise, take your medication religiously…sometimes that might not be enough and transplant is involved, but that’s done when only to save your life, give you a better life, if your life with CF has gotten that bad, you still have to exercise, eat properly, drink tons of water take your medications… BE COMPLAINT with whatever the drs tell you, and if you don’t feel like you are getting good enough medical care find a diff CF center.
Megan is one courageous cyster that is for sure. I love how her mindset focused on living not just for herself but for the people who love her when it came time for transplant. As Megan states that CF has made her grow up faster than most people, I truly believe that statement. Not very many people understand what that is like unless you live out this disease. But this makes us all embrace our life that much more.
I really like Megan's advice when it comes to relationships. Sometimes with an illness we forget about the other side of the relationship meaning that other person. We don't know how they will react once we tell them we have a life threatening disease. As Megan states it's only fair to let them know because we do not want to hurt our self as well as the other person. It is also good to point out how every CF person is different and we need to share with that person OUR CF story..
I think Megan nailed it on the head about how a newly diagnosed parent feels and what advice she would give them. For all the parents out there just remember we worry about our parents and how CF affects you as well. We were given CF because we are able to fight this and be strong.
Lastly, I share this same praise as Megan and many others who are a part of the CF community.........THANK YOU to all the organ donors. You give the gift of a second chance!!!
Well done Megan!