I was diagnosed with Hypertrophic Cardiomyopathy at the age of 20. HCM is a thickening of the heart muscle, it is the number one cause of sudden death. I had a pacemaker put in at that time. I was told after I got married I should have no problem having children. I was blessed with my beautiful boy Brendan in 2006. I didn't have too many complications with his pregnancy or birth so we got pregnant again in 2009. Immediately this was different. I couldn't walk a block so we went to my specialist at Mayo. He said I should have never had one child and probably wouldn't make it through this pregnancy and definitely not the birth. The pregnancy was long and hard but I was determined to bring Dylan into this world. Within seconds of the C-section I coded. They delivered Dylan and brought me straight to ICU.
I coded that night as well. By the grace of God I was able to survive, but my heart had gotten much worse. I was told I would need open heart surgery. I had my 1st open heart surgery when he was 10 months old. It seemed to help for a while, but within a year I couldn't walk or take care of the boys. I had the same surgery 3 years later. Only 20 people have had it done twice and I was told if it didn't work I would need a transplant. It worked for about a year, but after that my symptoms returned. I was told I have a stiff heart and there is nothing to do except wait for a new heart. I have been to several places trying to get listed but there is a catch. I am sick, very sick, but not sick enough to be listed yet. So basically I wait until I can't get out of bed anymore and then it may be too late. I am currently not willing to just sit and wait so I am enrolled in a drug study that may be the first medicine to help a stiff heart. We don't know if I am on the drug and it is the first trial, but I feel like at least I am trying. My sons were tested for my gene and my oldest one has the gene and my youngest doesn't. I feel like maybe just maybe I can help find a drug in case, God forbid, my baby develops this horrible disease.
If I had to give someone with a life threatening disease or other horrible problem advice, I would tell them to “Give it up to God”. I don’t think I could get through every day if I didn’t have my faith. I realize I am not in control. God truly has me in the palm of his hand. If they are not a faithful person I would tell them to relax and take it day by day. One foot after the other. I also try to find humor in it all. Instead of worrying and stressing I laugh. If things are going well and then we have a bump I always say “life was getting too boring!"
The biggest, most important lesson I have learned is to be thankful for every single moment. I try not to get angry at people. I tell the people I love that I love them every day. I hug and kiss my babies more. I’m not afraid to get old. I want wrinkles, I want to be 40, 50, 60… I have so many blessings. I always have friends and family who are always willing to help. I am lucky. I am grateful. I am alive. I have two little boys who I was told I would never have. I was told I wouldn’t make it through Dylan’s birth. He is now almost 7-years-old. I am grateful for every day I wake up and I see their faces. I pray I will be able to watch them grow. No matter what comes my way I fight and I continue this battle because I have three boys at home who love me and need me to keep fighting.