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Post by Maddy Simmers

My Life with CF

My name is Madison, but I prefer to go by “Maddy”. I am 22 years old and from Cedar Rapids, Iowa. I was born with a rare genetic lung disease called Cystic Fibrosis and was diagnosed at 5 months old.  Growing up, my life with CF was very challenging for my parents, with nonstop doctor appointments resulting in not knowing what was wrong with me. Doctors kept telling my parents they were just paranoid parents and didn’t know what to do with a baby, but that didn’t stop them from giving up. I went to multiple doctors’ offices in Iowa to the point that a nurse practitioner came up with the idea of trying to do tests on me and she decided to try a sweat test. After a few weeks, the results came back and the doctors finally told my parents I have cystic fibrosis. There was a sense of relief lifted off my parents’ shoulders, but they were still frightened about how to take care of a child with this disease. I was sent to the University of Iowa hospital and stayed there for 6 weeks on IVs due to being fatally sick. While I was in the hospital, my parents were learning about the new me with this condition and how to take care of me. Months progressed of my parents taking care of me, I had multiple doctor appointments, but I never once stayed in the hospital again. The doctors were very surprised and confused after learning my diagnosis and noticing the decline of being sick. My parents always told them I had God watching me and that is why I always stayed healthy. With my cystic fibrosis, I have always had weight issues but I never needed a feeding tube or a G tube as they call it here.
            Around the age of 12, I was granted my wish to go on a trip to Disneyworld from the Make a Wish Foundation, and that was a dream come true! I felt famous that week with everyone coming up to me, greeting me, asking me about Cystic Fibrosis. At my age, I only knew a little about CF so I told them what I knew, my parents very rarely talked about CF with me, but I’m not sure why. When we came back from Disneyworld I was part of a “Make A Wish” baseball game. The baseball game was in honor of Grady Paul, and I had the privilege of throwing out the first ball to start the game! They had a cake with my face on it in honor of me on that day, and an auction to raise awareness and money for the Cystic Fibrosis Foundation. The whole month was probably the greatest month of my life. 
            Most of My teen years I had FEV1’s of 115, until I was at the end of age 15 almost 16. My FEV1 dropped all the way down to the 80s, and I cultured pseudomonas and bronchiectasis 3 times in a row. That day changed my life. I went from being this super sick baby to very healthy and then caught a bug that will be with me forever. This was in 2013 and I was so frightened because I had never been stuck in a hospital before, only at 6 months old. They put a pic line in my arm, filled me with several antibiotics, but all I could think about was that my birthday was in 3 weeks and I hoped that I would be discharged by then! I was overthinking in the hospital to the point that I was blaming myself for what I did wrong to get me here. I know it wasn’t my fault, but that’s just how CF goes; pretty much, you can catch any germ from anywhere if you’re not precautious. After being there for about a week, my worries finally went away thanks to the nice nurses and people that stopped by with a gift and those who were there constantly supporting me. Two weeks went on, and I was still sitting in that hospital bed bored and couldn’t stop thinking about my 16th birthday coming up. The nurses could tell I was feeling depressed, so they had Child Life come for a visit (people who bring gifts and entertain you)! They had a whole banner made with my name on it saying “Happy 16th Birthday Madison”. They even had gifts, balloons and a huge cookie cake! My mood was completely transformed.

            After a couple of more days, I was finally able to go home and celebrate my birthday. School was starting up again and I was entering sophomore year (10th grade). It was extremely nerve wracking because this was my first time being there. A couple months in, I met my high school sweetheart around October. He was a junior, so we were never in the same classes, but we still made time to hang out and eat lunch together.

            Let’s fast forward to senior year! During 12th grade, I found out I was 16 weeks pregnant at the age of 17. I was almost 18 and still in high school and still with my high school sweetheart.  I lived with strict parents who monitored who I could spend time with and what I could do, which sometimes causes one to be rebellious. After finding out, my parents were still very worried that I had ended up pregnant because of my CF. Starting around age 13, I was always told I could not bear children because my womanly system did not work like a normal woman’s does. So when I became pregnant at 17, doctors were shocked and confused. I was still in pediatrics, and they had me start a NG tube (feeding tube through the nose) because I was only about 87 pounds and losing weight due to the baby taking all the nutrients from me. I finally turned 18, moved out of my parents’ house and in with my boyfriend and his family, due to the baby almost arriving and there was more space at their house. Even though morning sickness and being huge was very difficult, I still managed to graduate high school in May of 2016! I felt like I had accomplished a life goal and proved to everyone, that said I would fail, that I would go above and beyond and not let words of discouragement get to me. 
            After graduation, September was arriving in no time which meant that the baby was too. The days got harder, but my lungs were still going strong; my FEV1’s were in the low 90’s high 80’s, so I wasn’t doing horribly while pregnant. My weight had increased from 87 to 120 with doing night tube feeds and nonstop binge eating. That has been my highest weight ever. On September 16th, 2015, my daughter Kaylee Grace was born. Kaylee tested negative for CF at birth and her dad did not have the gene. Since I have CF and her dad doesn’t carry the gene, that means Kaylee is just a carrier and doesn’t have this awful disease!
            June 17th, 2017 my high school sweet heart and I got married after being together for 4 years. That was the second-best day of my life, first being my daughter’s birth. I was CF healthy and finally tying the knot with the love of my life. 
            The months and years went by. Everyone was healthy, even me, which was amazing; well, except the lifelong weight problem that I was still dealing with. Then in 2018, I was hit with ABPA (Allergic bronchopulmonary Aspergillosis). I was put in the hospital in May for two weeks on antibiotics to remove the allergic reaction I was having in my lungs. I was at my low of lows that year, to the point my FEV1 dropped clear down to the 60s! In my whole life, I had never ever been that low, and I knew I was sick with me not being able to breathe. my IGE level was crazy high in the 600s which my doctor knew something was wrong. I learned that I was allergic to the mold spores in the air; I didn’t even know that was a thing. I was always outside exercising or swimming with my daughter. I finally got out of the hospital and put on prednisone which helped me tremendously.

After a week, I was finally done with prednisone and felt great. After 2-3 weeks, I started feeling sick again and couldn’t breathe. The ABPA had returned. Like before, I was so upset and overthinking about what I did wrong. During the month of June, I stayed in the hospital for two weeks and repeated what I just did the month before. While I was there, I informed my doctor about how I lived in a mobile home and we had feral cats that lived under it whose urine we could smell coming up from the vents. My doctor drew some lab tests and informed me that it is possible that the cats are the reason that I am back in the hospital. He asked if I had a place to stay while the cats were removed. I left the hospital on prednisone, again, for a couple more weeks which seemed to help me again. After two weeks I had moved out of the mobile home and into a house that was safe for me, my lungs and of course my family. I tried my hardest to stay inside because I was scared that I was going to catch the sickness again. I was placed on more prednisone while I was at the new place to make sure I wasn’t going to end up back in the hospital and felt amazing, but still wheezy. I didn’t feel like my PFTS were back to the normal yet. I was healthy all winter and slowly made my way back to my normal. 
            The 2019 new year was just around the corner, and life was going great! January 30th, 2019, I found out I was pregnant with my second child. My husband and I didn’t plan on having any more children, but we were very happy to be adding to our little family. It felt like a repeat all over again, but this time being married and in the CF adult clinic. I still did the NG tube at night to give the baby and me more nutrients. All I could think about during the coming months was if the baby was a boy or girl and having names picked out. In April, I found out my baby was boy!! My husband was so ecstatic that he ran around telling and calling everyone at work about the baby. On the other hand, I didn’t care what gender the baby was, only if it was going to live a healthy life. This time around, my CF and lung function were doing amazingly to the point that at the end of pregnancy, my PFTS were in the 100’s which was very exciting to see since I hadn’t seen that for years!

            Baby boy was supposed to be born October 1st, but my OB doctors decided that I needed to have him at 39 weeks. On September 24th, 2019, Layton Blake was born, a week after his sister’s birthday! Layton was born through c-section because he was not cooperating and decided to breech. During the c-section I could feel him kicking, but I could also feel him kicking my lungs to the point where I felt short of breath. I did awesome without any oxygen, but the baby was not doing so well. I had seen him for maybe one minute until he was rushed into the NICU due to his lungs not filling up with air. Every time Layton would take a breath his lung would collapse, and I was so afraid that he had CF or something seriously wrong with him. A whole day passed before the nurses finally told us that he was doing great and his lungs weren’t getting air due to him being a c-section baby. If he had been born naturally, he would have had a “breath of life” as they call it, but a c-section birth is different. My husband took me to go see him. He had a nose tube in and was on a CPAP to help him breathe until he could do it on his own. Layton was a trooper and, on day three, was able to breathe on his own. He still looked very swollen due to the tubes but on day 5, we finally got to take home our precious, little, healthy boy. Layton is almost two months old, and everyone here is happy and healthy as can be! 
            My life has been a crazy ride with cystic fibrosis, but I can’t wait to keep living this journey. I don’t left CF define who I am, but I do cherish it for showing me to keep fighting harder every day, and to show my children to not give up in life, even when you feel defeated, just keep on swimming!  This is my life as a mom, wife and a girl who has Cystic Fibrosis.💜

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Our Community Column is a home for thoughts and opinions of members across the cystic fibrosis community. Sometimes serious, every so often lighthearted, but always engaging. It is our duty and privilege to listen to these stories and to share them with others.