OUR JOURNEYS

Patient story

Kevin Mueller

Incident That Changed My Life

When I was born, I had surgery immediately after I was delivered. The doctors told my parents that something wasn’t right and that I need to have surgery right there and then. On the ECHO screen, it showed that my heart wasn’t pumping correctly. My body was a light blue color so that meant that there wasn’t any oxygen going into my lungs so then I needed to have surgery to make the valves open so I could breathe correctly. The first months of my life, I had to stay at a hospital with my mom and/or dad. I had my first Christmas and New Years in the hospital. My brother and sister visited me a couple times in the hospital when I was younger because I haven’t seen them in the first three or four months of my life. When I finally was able to go home, I was welcomed by a big sign on the garage door saying “Welcome Home Kevin” that my dad made for me. I still have that sign in my bedroom in my closet. I don’t remember it, but I know that if I didn’t have my doctors that were there for me that I wouldn’t be here. I still see the doctors that I had when I was a baby so they know everything about me so if anything changes then they are the ones that are there for me. My parents are also here for me so if I have any problems, I can tell them also.

My first surgery was on “the transposition of the greater arteries” which meant that the surgeons had to switch my arteries so then the blood would flow in the right direction and do the correct circulation of blood throughout my body. I haven’t seen or talked to my surgeon since the surgery, but I know that he changed my life and if he didn’t do the surgery that I wouldn’t be here. After the years, I developed a heart disease called primary pulmonary hypertension. Primary pulmonary hypertension is a major part of my life, and I need to accept it. I use to play sports but due to the disease it makes it harder for me to run long distances and to compete competitively. I still do play sports but I just play them for fun with my friends. I wanted to play sports all my life, but it stopped at the age of around six or seven. I had to quit playing soccer and just sit on the sidelines watching my friends play.

My family was by my side all day and night so I knew that if I needed anything that they would be there. Some of my friends came and visited me when I went to the hospital for when I had to stay at a hospital for a yearly check-up. Over the years, I think that my heart disease is getting better, but I still will always have it with me. It is a non-curable disease, but I think there will be a cure some day. It might not be today or tomorrow but in the future there will be a cure. In the hospital I had to have an IV in my arm and other wires hooked up on me that monitored my heart rate and my blood pressure. I didn’t understand all the tests and words when I was younger, but now that I am older I know some of the terms that the doctors use. The tests that I take are basically the same all my life. I know what all the tests are and what procedures that I have to do to prepare for the tests.

My doctor, Dr. David Thoele, who I see for my hospital visits has been the same doctor all my life. He is a pediatrician for kids but since he has been in my life for all of my life, he decided to just continue being my doctor and I can see him anytime that I feel a change in my condition. Sometimes when I go visit him I also see student doctors so I am helping out people who want to become doctors succeed in life. The student doctors listen to my heart and ask me questions about my heart condition. I tell them all I know about my disease and that I still do things that teenagers my age do but it isn’t as competitively. My doctor is kind of like a second dad because he has been my doctor since birth. He even changed hospitals and the hospital that he moved to is closer to my house. Before he worked in a hospital in Chicago but now he works in Park Ridge, IL. The hospital is called “Lutheran General Hospital”.

In conclusion, my heart disease has made a major role in my life and I’m not proud of it, but then again I would rather be here on Earth with the disease than not at all. If the doctors weren’t as educated and hadn’t taken care of me, then I wouldn’t be here. I don’t think of my disease actually as a disease. I view it as that my heart isn’t as well processed to handle long distance running or competitive events. I do try to improve my heart by going on walks and short runs around my block. I don’t want to be treated differently because of my heart disease. I am like everyone else it is just not as well coordinated with my heart. I do have fun and go out like teenagers do. I am happy with my life and I wouldn’t do anything different than what I’m doing today. It’s my life and I show people that I can do things that most people with my disease aren’t able to do. I push myself to the limit and never give up. It may be a heart disease that I have, but I don’t see that I have it. I just see that I am a person with a weak heart that can do a lot of competitive activities.

 

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.