Amber's Heart Disease Journey

To begin this we will start for when I was born.

October of 1988, I was born with a heart murmur. I had to have a heart monitor to keep an eye on me but the thing is the monitor kept shocking my parents so they ended up returning it. I was a healthy baby but I am not sure if my parents ever got a heart monitor again after having that one. I had no issues in my toddler years, kid years, and the elementary school years. It wasn't until I reached Middle School is when I noticed having trouble.

September of 2000, I just began my sixth grade year in August but September it became a difficult start because I was beginning to miss a lot of school and I couldn't breath a lot of the time, I would also pass out at random for no reason. This was long before I was required to have Gatorade. All I can remember from this was going constantly to see doctors in Gainsville, Florida at Shands Hospital it is now called UF Health Shands Hospital. Most of my Middle School years is a blank because I don't recall much from 6th to 8th grade all I could remember is begging doctors to operate on me but they kept swearing up and down I was fine. I wasn't fine because I was diagnosed at age 13 with Ebstein's Anomaly and had been required to drink Gatorade the rest of my life because I have low sodium issues. I would also stop breathing in my sleep, I remember many times someone would have to wake me up so nothing bad would happen.

What is Ebstein's Anomaly: A defect of the tricuspid valve. The tricuspid valve separates the right atrium (the chamber that receives blood from the body) from the right ventricle (the chamber that pumps blood to the lungs). In Ebstein's anomaly, two leaflets of the tricuspid valve are not in the right place.

August 2004, I began my ninth grade year. My health declined so much worse the older I got and doctors still refused to operate on me. I was now 15 years old heading to my 16th birthday and I had to keep being told I was fine but I do remember a good chunk of my Summers in between the School Years that I had to keep wearing a stupid heart monitor but it never showed anything wrong besides missing rhythms when I did anything excessive otherwise doctors didn't see anything wrong with me. I was told that I shouldn't be alive at the age I reached but I was and still kept taking daily walks also earned myself a six pack, I was so proud of myself for being healthy at 95 pounds. 

Now we will jump the timelines because between High School and moving nothing happened much.

Summer of 2009: Dr. Stephen Lewis in Charleston, West Virginia. I needed to see a heart doctor and we finally had a referral to see one. As we went there that year for the first time. He went to check my heart and asked if I ever been operated on for my heart because he couldn't believe how bad it sounded. The next thing I remembered him asking where my parents were it was just me and my dad at the time, mom had stayed behind with my brothers and sister in law. Once, Dr. Lewis reached dad in the RV which became an awesome experience expressing how he needed to do the same in his own lot. He asked my dad directly why I hadn't been operated on and my dad couldn't give an answer because he didn't know either. Let's just say when I went back to my next appointment with him to schedule my very first surgery for December of 2009, he chewed out my previous hospital and yeah, it was bad. He was surprised I was alive for as long as I have at that time. 

After asking the man I was with not to get me pregnant that year...by October of 2009, I was experiencing pregnancy symptoms and went through a lot of testing to find out by December of 2009 that my first surgery was cancelled due to me being pregnant with my daughter at the time.

Pregnancy of 2009-2010: You won't believe this as much as I lived through it but I was healthy with my pregnancy, my beautiful daughter kept me alive and we only had one near death experience because I caught the flu while pregnant with her. We would have lost our lives if I didn't get to see doctors at the time, I don't even remember how I got from Weston, West Virginia to Morgantown, West Virginia. Because I had to be monitored I was already having a risky pregnancy as healthy as I was but I survived having the flu after nearly losing myself and my daughter to it. I was able to have a natural birth with Melanie and I got to raise her for a full year and a few months.

October of 2011: My very first surgery at Ruby Memorial Hospital, Morgantown, West Virginia. The man that got me pregnant left and I was raising Melanie with my parents, brothers, and sister in law. I don't recall dating anyone or being in a relationship with anyone at this time if I did it was vague or I just rather forget them all together. Going under the knife the first time was scary, I will never forget staying up late and not able to sleep because I wasn't ready to face my biggest fear that I begged to have since I was 14 or 15 years old when I noticed that I had to have surgery. I remember telling everyone on Facebook that I was friends with that I am scared to be operated on and how much I didn't want to leave this world. My heart is 70 years old and I have lived past my teens, made it to early adulthood. This surgery also happened after my 22nd birthday. Disappointment of this surgery after begging for a Mechanical Valve was that I got stitched for the valve because they were hoping it would hold it. Turns out, it failed and I had to wait for another operation.

Seven Months Later...

April of 2012: Back to Ruby Memorial for another operation. This time for the Pig Valve. I wasn't as scared though I still try and plead to have a Mechanical Valve but neither the doctor or surgeon would let me have it even though the heart doctor was the one that cut me off from having kids back in 2010 after having Melanie. This surgery was really bad because I had to stay in an extra week because I had passed out in the playroom after spending time with my daughter and my parents. My dad literally laid me down on the floor they had to try and keep me awake as they tried to get the pace maker to help move the valve. The pace maker didn't last I had to have them remove it because it was literally hurting me and I was in tears, I will never forget begging my doctor to get them to stop messing with it since it was electrocuting my ribs (that isn't a joke). After that I was well enough to go home after two weeks, it was the worst part of needing surgery. I had to deal with blood draws every week and weekend for six months to make sure I was okay. I don't have a heart murmur no more last when I was checked back in 2018. 

April of 2023: It is exactly 11 years since my second surgery. I am still struggling most days especially when my body gets over heated on warm days or if it gets too cold my heart will still give problems. I am more exhausted like I was in my teens/early adult years. I am drinking so much Gatorade that my dad to restock several times over the years or me and Larry will go to the local Walmart and get extra. I am due for my third surgery but I am currently without any heart doctor to see. I am making arrangements while Kami is out of school for Summer Vacation to get seen because I do need a heart doctor it is important to keep my health in line and keep on living for Kami.

Since the operations...

Larry had asked me a serious question this morning which is what encouraged me to write this blog. He asked What did it feel like? I answered him honestly. Once I was put to sleep I didn't feel anything, I don't remember anything either except when I woke up about mid-day both times. Feeling relieved to be awake from both because I wasn't sure if my heart would let me wake up. The next question he asked Did you die? I am pretty sure I did both times because I didn't have dreams or anything while they operated on me. I did dream for both once I was in the NICU, I felt myself come back to my body when I was in there as weird as it sounds, it is the truth. 

Thank you to Dr. Phillips & Dr. Gustafson from Ruby Memorial Hospital for saving my life! I hope you both enjoy Retirement. I will miss you both! Also a major Thank You to Dr. Lewis from Charleston for believing me and understanding my condition.

I hope you all learned something from this. I may not be okay a good chunk of the time, I am very moody lately due to pain but I am not faking my condition, never have, never will. My dad took time off to make sure I got to my appointments, I missed a lot of school because I wasn't well. I am a proud mom to my transgender and gay son Kami Ray Boyce. I am proud of being an Author that has kept me from suffering pain as much as I do. I would like to praise my family, friends, several exes, and many more people that have come in and out of my life for the endless support and love. 

Thank you to whomever reads this.

♥ Amber ♥