I was born in 1986 with a rare condition called Heterotaxy Syndrome. My parents buried their 22 month old son exactly one year before I was born due to the same condition. They were not aware that it could be genetic at the time and suddenly found themselves faced with the likelihood of burying another young child. I was given an 80% chance of dying before the age of 1, 90% chance of dying before the age of 2, and virtually no chance of making it past my 5th birthday.
The odds were against me, mostly due to the severe congenital heart defects that accompanied the syndrome. I was essentially born with half of a heart. Along with my heart defects, I was also born without a spleen and my stomach wasn't connected to my small intestines. In fact, most of my organs in my chest and abdomen were either malformed or in the wrong spot. A simplified way of understanding it is that the left side of my bodied internally copied the right. (I'm always right!)
I have had many surgeries throughout my life. This includes three open heart surgeries. At three months old they placed a shunt in my heart. At 19 months old, they did a Classic Fontan. This is now done in two surgeries and after the age of 3, because most or all of the other younger toddlers they did this on died. But somehow, I survived. I experienced arrhythmias beginning in high school and ultimately had a pacemaker placement followed by an open heart surgery (Extracardiac Fontan with the Maze Procedure) at 19 years old. I have also had surgeries to connect my intestines and replace my pacemaker, along with a couple of eye surgeries.
Throughout all of this, I was able to live a great quality of life. I graduated from college and went onto get my master's degree in Marriage and Family Therapy. I became a therapist initially to help families and individuals coping with chronic and terminal illness.
I met my wife, Kayla, in 2014. I wasn't sure how or when to tell her about my health. I don't remember if I told her or if a coworker mentioned it, but she had the best response. When I told her that I had a pacemaker, she didn't cringe or react negatively at all. She said I was like Ironman! We started dating in 2015 and got married in 2017. We now live in North Minneapolis with our incredible furbabies. Currently Kayla works as an assistive technology specialist. This means she helps children with disabilities access assistive technology.
I am still practicing as a therapist, but have had to significantly reduce my time working within the past few months. This is due to my health declining, with the primary symptoms being exhaustion, weight loss, and arrhythmias. Unfortunately, this means that we have had a large reduction in income. However, I don't want to compromise my health or the care of my clients. In order to provide the best care to my own body and my clients, I cannot push myself beyond my body's limits. I care deeply about my clients and it was heartbreaking to have to say goodbye to some of them.
You may be wondering, why the decline in health? Unfortunately, the Fontan (heart) circulation that I have had for 35 years is very hard on other organs in the body. This has caused me to develop cirrhosis over time. Research shows that the liver fails first, followed by the heart. While my heart muscle is good for its age and anatomy, it has catastrophic impacts on the rest of the body. My body has worked hard to compensate for this, but it can't continue to do this for a long period of time. Due to my unique blood flow, the normal ways of showing liver failure aren't reliable. If I do reach end stage liver failure or develop liver cancer (another risk specific to my anatomy), it will be too late. Unfortunately, I also have a complication of arrhythmias, which is also impacting my energy and functioning level.
For these reasons, I am seeking a Combined Heart and Liver Transplant (CHLT). Due to so many Fontan patients dying young and the fact that I have a rare condition (Heterotaxy) on top of having a Fontan, there are very few facilities and doctors who have the knowledge and resources to help me through this process. I am going through a great deal of testing, including a heart cath and liver biopsy in December at Mayo Clinic. But there is a possibility that I will need to go to another state in order to be accepted for a CHLT. If I am accepted, I will need to relocate until I am transplanted. This of course carries a heavy financial burden, but this is literally life or death.
A CHLT is my best chance at long term survival. In order to make this happen, we are asking for help financially. It is difficult to put a number on cost and honestly, any amount helps! Any funds raised will be going towards my health care costs (copays, premiums, travel/accommodations related to doctor appointments and medical procedures, medication, medical supplies, etc.), as well as basic living needs such as food. We are also hoping to purchase a bed that we can put on our main floor, so that I have a place to recover where I don't have to be going up and down stairs. We are actively working to seek out other supports as well, which includes health insurance through the state.
I finally got the rest of my evaluation scheduled! I will be at Mayo from May 21st-May 24th. May 21st will be the 39th anniversary of my brother, Daniel's, death. This might make for an emotional day, but thankfully Kayla is able to be with me that day. I am also hoping to stay at the Gift of Life house that week. My niece graduates from high school Friday the 24th and I'll get to see her on the 25th. I turn 38 on May 26th, so it'll be quite the week!
Two appointments were not able to be scheduled in that time frame and are currently scheduled in June. I'm really hoping that those will be able to be moved up, but we'll just have to wait and see.
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