Amy's Story "A New Heart"

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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.  

 

Amy Moran Mayo HCM

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.

Amy Moran HCM Springfield Missouri

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!"  

Amy Moran HCM Springfield Missouri

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.