My Story

I was born with several heart problems- the two major ones are triscuspid atresia and transposition of the great vessels. At first, doctors didn't know anything was wrong with me. I went home like any normal baby after being born. I came down with pneumonia and was put on medication for that. Mom was supposed to bring me back to the doctor for a follow up, but wasn't going to bring me because she thought I was doing so well and getting over the pneumonia. She decided just to take me- it was at that appointment that the doctors realized something was very wrong with my heartbeat.

At 3 months old, I had a corrective surgery for my heart conditions. It was all they could do on such a small heart 28 yrs ago. It was to hold me over until I could really have corrective surgery as a toddler.

When I was 3 yrs old, I had the first stage of corrective surgery (at Children's Memorial Hospital). I had the second stage the next year. This corrective surgery is the Fontan procedure.

I was raised like any normal child from then on. I didn't really think much of my heart problems, and my parents treated me like any other child. I just knew I had a heart problem and had to get check ups, echo cardiograms, EKGs, stress tests, etc... But I was okay with that. It was all part of life.

When I was 16yrs old, in high school, I started getting really sick. I was experiencing tachycardia and dizziness as well as very much fatigue and even rapid weight gain. I had no clue what was going on. It was actually sort of gradual, so it didn't scare me too much. But I went to the doctor because of the tachycardia and when they called back with the results from the tests, they wanted to see me immediately.

I went in, was put under anesthesia, and they "shocked" my heart beats back into normal rhythms. (I always compare it to those paddles that you've seen on ER or other shows like that...) I didn't feel anything because I was asleep, but I woke up with burn marks (from the paddles) on my chest and back. That was the least of my worries. The next step was to schedule the Fontan redo (a common procedure for Fontan patients) as soon as possible.

I had the surgery in the beginning of October. I was told recovery would be 7-12 days in the hospital. For me, it was 3 months. I got so sick after surgery. They had redone my Fontan corrections, but also added a pacemaker. Nothing made sense... I just wasn't getting better. I was retaining all kinds of fluid. I had my lung collapse a couple times. I got pneumonia. I was miserable and sick for weeks and weeks. They tried to send me home twice, but I was right back in the hospital days later because I was still throwing up, sleeping non-stop, retaining fluid, and in a ton of pain.

Finally, they put me back into the OR and did another surgery- another open heart (5th one in my life). They wanted to see what was wrong, maybe something needed to be corrected still. I came out of surgery, still wasn't better, still had a hard time recovering. The doctors finally came into my room and basically told me they didn't know what else to try. It was just a waiting game. To me, it meant "This is all we can do... we hope you don't die."

I cried and cried alone in my hospital room, begging God to save me. I sort of made a deal with God, for what it was worth from a naive, dying teenager... "God, if you let me live, I will live my life for You." It was another several weeks, but I was getting better and I got to go home. It was still a battle even at home... getting rid of all the fluid, gaining weight back (I had lost 20+ lbs in the hospital), trying to maintain good oxygen levels, etc...

My heart now? I am doing pretty well. I have had a bunch of pacemaker change out surgeries (replacing the battery so it keeps kicking...). But I also had to have another emergency open heart surgery because my pacemaker stopped working. There was a poor connection between the pacemaker and the heart, so they had to reopen my heart and repair that connection. In doing so, they added another lead to reinforce the connection. Surprisingly, I had a normal recovery from that surgery.

Because of my heart problems, though corrected- my heart is not normal. I only have about 50% of my heart working today. One of the chambers in my heart is totally inactive and so the blood is rerouted. It makes activities for me a lot more difficult and it makes a lot of other things harder for me.

One problem I have because of my 50% heart function is fluid retention. Many patients will retain fluid if/when their hearts go into failure. My heart isn't failing, it's doing really well, actually. But because it's not like the average heart, my body considers it heart failure. I have been retaining fluid now for several years- primarily in my abdomen, but sometimes in my legs/ankles.

My newest battle is dealing with the side effects from the fluid retention... dealing with the discomfort of the fluid in my abdomen (it feels like I'm pregnant), dealing with hernias (5 hernias in 14 months), and many other smaller issues here and there. I have had 3 hernia surgeries in the last 14 months- the two hernias took to repair the first time. The 3rd hernia was stubborn. After 6 months I had to go back in and have it repaired again. Again, it came back after another 6 months and it was repaired again this past August. Now, we just see if this is going to take.

The fluid won't go away. They remove it when I have surgery. The last surgery they removed 4 liters of fluid from my abdomen. And after surgery I retained fluid in strange places and in strange ways... but it's going down now and I'm coming around.

I just wanted to share my story. Not a lot of people know it, and maybe not many people care to hear it. But I'm not on the radio to tell my story. And I'm not in a hospital bed dying. I'm a living, breathing, thriving woman- I may have difficulties and big hurdles to get over... but God has amazingly blessed me and taken care of me. He has blessed me with the wonderful care of doctors and nurses at Children's Memorial Hospital for the past 25 yrs. I am 28 yrs old, and I never want to leave that hospital- you wouldn't either if you'd been treated there.

I also have an amazing support system- my parents, who raised me and cared for me all through my childhood, teenage years, and now adulthood. They never let me go to an appointment alone. (In fact, Mom got really upset with me for going into my doctor's office, alone, for a blood test... lol.) I have three amazing sisters that have always treated me like the rest of the gang- beat me up, fought me with, etc... But in all seriousness... I have the best sisters ANYBODY could ever have. They took turns staying with me in the hospital the 3 months I was in there. They'd rub my legs, lotion my feet, comb and wash my hair, bring me cards and other things to brighten my room... And yet, even though they'd treat me "normal," they also knew when I needed a break and they'd take me seriously. They were always there to sit off on the sidelines with me, take a break and/or check on me. What an amazing gift. In the more recent past, I have been blessed with a husband that is so understanding of all my health issues. He married me, he married the health issues. He puts up with so much. He learned really quickly how to take care of me, how to help me, and how to deal with my hospital stays/visits. He does a really good job.

But above all those people on earth that have seen me through- I have a God that has created MIRACLES in me. If I had been born with one heart problem and not the other, I would've died. It was because I had both problems that I was alive. God blessed me with life and I plan to proclaim it and share it with others.