Amanda: HRHS, 38

Updated: Oct 24, 2019

My name is Amanda Harper. I was born December 1st 1981. The type of CHD I have is HRHS, Tricuspid Atresia, ASD, VSD , Single Ventricle

My two main Surgeries were the Blalock Taussig Shunt & Fontan both done at Toledo MCO Hospital in Ohio I was the second baby to have the Fontan at that Hospital.

When I was little we did not have internet or cell phones so we really could not reach out to others with CHD. Except I wish we would have went to more Christmas party's that the hospitals had for heart families.

Current issues I am having are trying to keep my oxygen up. As of December I am now on Oxygen 24/7. I also having major brain fog and anxiety. And palpitations. I also have Sick Sinus Syndrome and PVC. I just received a pacemaker. I am currently getting testing done to figure out the rest.

I am currently taking lasix for swelling and baby aspirin and looking into other medications to help with other things.

For my diet I am currently doing a Gluten free plant based. (sometimes I am bad and need a cheeseburger lol) trying to do some exercise while being in oxygen. I used to be pretty active at exercising until about a year ago.

I currently work a full-time job. I enjoy my job and it keeps me busy and my mind off of things.

I have noticed my energy has declined about two years ago when I had a non heart related surgery and then ended up with a pacemaker last year.

My hobbies are riding and showing my horses and hanging with friends and my husband always helping me out.

I always get asked, do you have kids? No. I do not have any children. Not unless I can count my husband, three dogs, and a horse. My husband and I tried the kid thing and spent lots of money with shots and medication and artificial insemination . Well it did not work and made me very very sick. So the kid thing is still a sore subject for me. Honestly it was probably for the best not to have any.

My advice to parents with CHD children is please don't keep your child sheltered. Let them do the things they want (with in reason). You never know when they might have more bad days then good days.

Advice for other CHD Adults. We all know our limits, of you feel like something is wrong and a doctor tells you there is nothing they can do, GO GET A SECOND OR THIRD OPINION.

All of my doctors are great! But I wish they would communicate better with each other.

I am currently 32 years Post Fontan with no revision yet. I take one day at a time and always try to find a positive when having a bad day.

My favorite quote is: "Life doesn't get easier, you just get stronger!"

This is my favorite because When our chronic Illness hits us with bad days we always try and find a positive to make us stronger and fight through it.

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