Cystic fibrosis is a disease that can effects people in many different ways and there are many different outcomes. Sometimes when I see young children really struggling health wise with CF it really causes a lot of sadness. Why would a child need a life saving double lung transplant and they are not even a teenager?
I think many of us have heard about Sarah Murnaghan. She is the very young cyster who needed a double lung transplant but the family pushed very hard to get her on the adult donor list. I know that fight has really been beneficial to Sarah and some young children so far. But I had no idea that there were was someone much like Sarah Murnaghan years and years before.
In this interview you will see how at 11 years old Tara overcame one of the greatest challenges for someone her age. Tara is truly an inspiration to all of us even outside the world of CF!
NAME: Tara (Bell) Haddix
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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 6 months old when I was diagnosed. I started wheezing pretty soon after my mom took me home from the hospital. She kept telling the doctor my baby is wheezing. He would not believe her and told her she was just a new mother and nothing was wrong with me. Finally at my 6 month check up I began wheezing in the office. The doctor had me rushed to the local ER because he thought I had water on my lungs. Being born in 1980 many doctors had never heard of CF. Finally after several tests one doctor suggested a sweat test. And I was diagnosed with CF. I was then transferred to RB&C where my parents began learning what cf was and how to do all my treatments.
What has been the biggest challenge for you dealing with cystic fibrosis?
Never being “normal”. I hated that trying to run and keep up with my friends made me cough and short of breath. I truly hate when I am sick and can’t keep up with life.
Please share with us any triumphs you have accomplished because of cystic fibrosis?
I would say it is all the CF friends I have. Without CF in my life I would never have met all the amazing people I know with CF. Although I have lost some of those friends I feel it has been a privilege to have known those people and my life is truly better off because they were in my life even if only for a short time.
Now that we know you have had a lung transplant, how did you view the world before transplant and after transplant?
Before transplant I felt that one day I would just wake up and feel better. While waiting on the list I kept thinking I wouldn’t need new lungs because I would get better (the mind of an 11 year old) but after transplant I realized what I thought was “feeling better” is how I now feel when I am sick. So a normal sick day for me now was a very good day before new lungs. I remember being scared to death to take that first breath without oxygen. The ICU nurses actually had to trick me off my O2. But that first breath was amazing!!
Tara at her organ donor's grave site! Paying her respects!
What advice would you give anyone who is on the lung transplant list?
It isn’t easy. It takes a lot of fight and a lot of determination. And then things can still go wrong. I was in the hospital for 8 weeks after receiving my new lungs. My chest had to heal open in the center due to a staph infection that spilled out of my old lungs. I had many issues with scar tissue and because of that I had more bronchs, along with laser surgery to open my airways up, than I can count in the first 9 months post transplant. I crashed on a CT table and looked down at them trying to bring me back. I fought for life every step of the way and it was worth every step. It is not for the faint of heart and if you aren’t willing to do a lot of work yourself it really isn’t something you should look into.
As you mentioned above you not only had a double lung transplant but also a kidney transplant. Was the kidney transplant process any easier since you went through a lung transplant already?
In my opinion yes. Does that mean a kidney transplant is easy. By no means. But compared to a lung transplant yes. I actually told someone that after a lung transplant a kidney is a walk in the park. So she was expecting her kidney transplant to be easy with no issues at all (she also had already had a lung transplant). She actually posted that the people who told me that getting a kidney is a walk in the park lied to me. I commented back and said no that is not what I said. I never said the surgery or recover was easy. I said compared to a lung transplant it is. I would take a kidney over another set of lungs any day lol.
You seem to have overcome a lot of odds in your life! What is something that helps get you through the really challenging times?
My faith. God has done miracles in my life. And I know He will never give me more than I can handle. Sometimes I ask Him ok God how strong do you think I am?! But He has always provided and always helped me overcome the odds. Plus my family is a big help. They believe in me.
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 never held me back. And I have always been very vocal with all my doctors. I went to school after getting my lungs, and was in dance classes and on the high school dance team. Sometimes I think that is why some people do so poorly, they live in a bubble. You need to live in the world. Now I am not saying find a bunch of people with the flu and go hang out with them but don’t live inside all winter because there are too many “germs” out there. I work in the public at a store all year round. I have only had the flu once in my life and it was in 2012 the year they were giving the shot for the wrong one. And I actually caught it from a family member not at work. My parents really did good and I am so thankful for how they did raise me. They also didn’t keep secrets about my health. I knew up front that I might die going through the transplant surgery. They didn’t sugar coat it and I am glad.
Tara with her oxygen tube. Her sister is in the basket. She passed away at 9 months old from CF!
You have seen a lot of things as I call you a CF veteran. . 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 only had CF lungs for 11 years of my life. And in that 11 years I was pretty much always sick. I know most people don’t get so sick so young. Up until a few years ago I felt so disconnected from the CF world. All the new drugs won’t help me. I have never even used a vest because they came out after I got my lungs. And although I know a lot of advances have happened I still see CF people dying young. Kids dying, young adults and so on. Do I think a cure for everyone with CF is right around the corner? No. I don’t think we will ever have a full cure that will help everyone. There are great medications out there that will help the younger generation live longer. And I pray I am wrong. But I am still seeing a lot of people with CF dying way too young. CF is too complicated to have a cure for everyone like so many people want. I guess that is just what I feel in my gut.
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. I truly believe CF has made me the person I am today. And I would rather it be me than someone else. Like most of us. CF has taught me to not take life for granted. I am not promised tomorrow, but I absolutely HATE the saying that anyone could walk outside tomorrow and get hit by a bus. I heard someone else say this once as a response to that statement and I love it! Their response was, Yeah but when you have CF the bus is chasing you and trying to kill you. I really wished I remembered who so I could quote them.
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?
I have never kept my health problems a secret. I mean I don’t tell every person on the street I meet but I also don’t try to hide it from people. I also don’t start by meeting a new person and saying by the way I have CF, I had a double lung transplant and a kidney transplant and I have diabetes and so on. I just talk about it. And sometimes I just start with I have a lot of health problems and as it comes up people learn what they are. I don’t remember how Kevin, my husband, found out. I don’t remember sitting down one day and giving him a speech but we were friends before we dated and he knew about me when we started dating. He just learned through our friendship because I talk about it very causally. It doesn’t bother me at all.
Tara and her husband!!
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 can understand being scared. It is scary. But they also need to realize their kid is still a kid. People with CF are normal people we just can’t breathe lol. We aren’t as fragile as some people make us out to be. I am not saying we can do everything without our health getting in the way. But we can still do a lot. Just be cautious when your child is sick and make sure they take their meds and do their treatments. You can do everything right and the kid can still get sick. Or you can do everything wrong and the kid still be healthy. Because that is what CF is.
What advice would you give anyone who is battling cystic fibrosis today?
Don’t give up. Fight till the end. Which is hard. But all of us CFers are a lot stronger than many of us give ourselves credit for. As long as we fight to the end CF doesn’t win. And in my book that is all that matters. Not letting CF win.
Is there anything else you would like to share with us when it comes to your battles with CF?
Sometimes I feel really guilty for doing so well. I have lost more friends to CF than I can count and I have also lost a sister to CF. I have no clue why I have been so blessed with my CF and I have had to watch friends die. Then I think, maybe I am here for those who are ready to give up. They hear what all I have been through and realize if I can do it so can they. Or for those who have no hope and they think their lungs won’t come in time. Or that they will get lungs and only live a couple years. Then they hear my story and realize there is hope of living twenty plus years post transplant. My hope for every person with CF that I meet will live longer than me and do better than I ever have.
I met Tara on facebook and when she started talking about her transplant with me I almost fell out of my chair. She said she was 22 years post transplant!!! I believed it but was still in shock. I also didn't realize that she had a life saving kidney transplant from her mother. Talk about real love for your daughter.
I think Tara is destined and was put on this planet to share with us her life story. I can tell you I learned more in this interview with Tara than I think I could have in any 5 minute conversation with her.
I can tell CF doesn't define Tara's life. Her life and how she views things is truly shaped from getting that second chance. All I can say is Tara you are more than an INSPIRATION to all of us. I wish you much more success in your future endeavors!!