29 years, 24 operations, 1 goal. Live!

This post was written by Extra Lifer Michael Coughlin. You can learn more about Extra Life at extra-life.org. 

My name is Michael Coughlin. I was born, November 6th, 1990 in Downers Grove IL. Shortly following my birth, I came down with what is known as “Blue Baby”. My lips, fingertips, toes, and ears turned blue, due to lack of oxygen caused by heart defects. I was then rushed to Children’s Memorial Hospital, (What is now known as “Ann and Robert Lurie Children’s Hospital”) in down Chicago where I underwent many operations in the first few months of my life. I was diagnosed with “Tetralogy of Fallot”. {Here is a video that explains what “Tetralogy of Fallot” is} https://youtu.be/8BJOUfycsxo Not only did I have the hole in my heart between the lower chambers patched, and a stent placed in my heart. I also had to have a fake pulmonary valve put in place as mine did not form at all. I also have a conduit, or tubbing, in along the pulmonary branch. The reasoning behind that I do not know. I have had the stent, the valve, and conduit replaced three times in my life so fare. I have had 8 operations on my heart this far.

After my last heart operation back in August of 2005, just before my sophomore year of high school started, I developed “endocarditis”. A deadly infection of the heart that can only be contracted by getting bit by a wild boar, or threw open-heart surgery. I went from 155 lb to 104 lb in less than three weeks. If it wasn’t for my grandmother forcing my mom to take me to the ER, I would have been dead a week later. It took the CDC four days to find out I had endocarditis, and immediately after I had a PIC line put into my right arm, (A central line for medication, blood draws, etc.) and put on vancomycin and Gentamicin. The top to worlds strongest antibiotics. I also had a feeding tube put down my nose. One of the systems of endocarditis is a lack of appetite. I was fed a shake threw the tube containing 2,500 calories each. Along with other needed vitamins and nutrients. I did this for about two months. I had a tutor for half of my sophomore year. She was my Freshman science teacher, and she teared up when she came to see me the first time at my house. (If you are reading this Mrs. Slivka, I am sorry you had to see me like that.) Of course, I recovered, with little side effects of the drugs. The main one I have is ringing in the ears. It’s only in on one side and doesn’t happen too often. The other one is slightly deformed kidneys, but they still work at 100%.

Along with the “Tetralogy of Fallot”, my pulmonary branch, or the array of arteries that carry poorly oxygenated blood to the lungs, had to be rebuilt. Normally the branch will look like two trees joined at the base. One facing right lung, the other left lung. For me, that was not so. From what I have been told it was a jumbled mess. Simply put, take two lengths of string, and mix them together in a pile. That’s what it was like. They have also placed a few stents inside my lungs to help with blood flow. On top of that still, I was found to have portal vein thrombosis. In my case this means that the vein running from my spleen to my liver was 100% blocked, causing blood to back up, enlarging my spleen, not get filtered by my liver, and a lot of other issues. It wasn’t until I was in the 4th grade that they found the blockage by complete accident. The tech performing an ultrasound of my spleen decided to look a little bit lower in my abdomen and spotted it. After that, I had an experimental procedure done to correct the issue called a Rex shunt, designed and performed by Dr. Superina in Chicago. He had said that my body had formed a web of smaller vessels around the blockage to try and allow blood to get to the liver to get filtered. I was the 12th child in the US to have this done. Due to the extent of my conditions, I have always had to see pediatric cardiologists even after I turned 18. No other Dr. around would even look at me let alone see me at a patient.

In total, I have had 24 operations with the 25th to be done on December 17th, 2019. I was to have just the valve replaced via a new Cath Lab procedure on December 20th, 2018 at Dell Children’s Medical Center of Central Texas. However, due to the amount of pressure inside my pulmonary branch they were unable to. I now have been diagnosed with pulmonary hypertension. (High blood presser in the pulmonary artery and branch. When they tried releasing the new valve, the pressure began pushing it back inside my heart. They found that the reasoning for pulmonary hypertension is the conduit is now too small and will also need to be replaced. The stent is also not sitting where it should be anymore. So come the 17th of next month, in three weeks and a day from now, all three artificial components in my heart will change. It is this why I can not thank enough anyone who donates or volunteers their time, to any children’s Hospital.

Thank you!

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