This week we’re featuring a story written by Sarah Miller, in her own words, about her experience with CHD, among other health issues. But the most important part of her story is what she’s doing now to ensure other people experiencing the same thing don’t feel alone. Enjoy!
Hey y’all, I’m Sarah. I’m happily married to my crazy, wonderfully supportive husband and I’m a SAHM (stay at home Mom), loving life and cherishing every single beautiful miracle life gives me. I have two beautiful bonus daughters, three furry four legged babies and one hedgehog. I’m 36, so I’m basically an old southern woman! Think Steel Magnolias meets Designing Women with a little bit of Sophia Patrillo thrown in for good measure. It’s where I get my humor, and let’s be honest, you can’t go through this kind of health stuff without humor.
I was born with many birth defects, one being Tetralogy of Fallot (TOF). I was born with short arms that are similar to those of the Thalidomide babies, though my Mom never took Thalidomide. My Mom did, however, take something called Bendectin, which was for her morning sickness, though she did not have Hyperemesis Gravidarum.
I was also born with a deformed ear, so that meant I was hard of hearing; at around four/five years old, my Mom had my hearing tested and results indicted the need for a hearing aid. I’ve had numerous inner and outer ear reconstructive surgeries on my right ear that have all failed; I maybe have 20% hearing in that ear. When I turned about 22, I quit wearing the hearing aid, much to the consternation of my family and friends. I am positive my husband would love it if I would wear one now! (But that’s marriage, right? Shouting to each other from other rooms.) As I’ve grown older, it seems I also have some type of sensory disorder. When things get too loud, bright, busy, or there are too many textures, I can’t seem to deal with it anymore. I have to take a self-induced “time out” to re-center and calm back down. I cannot help but wonder if this is somehow connected with my many birth defects.
At around four or five years old I had a Blalock Bilateral Shunt at just a few days old to “hold me over” until my corrective OHS, in the mid 80s at MUSC. My family really didn’t know what everything was and what it meant, or what to expect. It seems many families were in the dark like this back then. I had really no other health issues until 2016 when I began getting tired and out of breath all of the time. My pediatric cardiologist I saw in Florence kept telling me I was fine, even after many echos in his office. I went to my regular doctor to tell him what was going on and he sent me to MUSC for a super detailed MRI that Florence didn’t have. The results said I basically had a skeleton of a Pulmonary Valve. Therefore, in March of 2017 I had a much needed PVR via the cath lab.
I then began suffering from chest pains, for this article I’ll call them an “attack,” from now on. When the chest pains began I went to my pediatric cardiologist in Florence, who once again, ran an echo that “was fine” and said it was just my anxiety. A month or so later, I went to the ER in Florence because it felt like I was having a heart attack, and I was admitted. My pediatric cardiologist came into my room, looked me my Mom and in our eyes and said it “was all in my head.” We were floored. This was a doctor I’d been seeing for twenty years because he’s the only cardiologist in town who’s (supposedly) trained in TOF. He signed my release papers from the hospital. Meanwhile, these “attacks” kept happening. I called and made myself an appointment with the ACHD accredited Adult CHD Clinic at MUSC; they quickly put me on a halter monitor. It turns out I had had an extremely bad attack and was admitted to my local hospital. I was finally diagnosed with Costochondritis, which is the inflamed and aggravated nerves of the rib cage. I’d never had this issue life until after my PVR. My regular physician put me on medications, put me in physical therapy (PT), and gave me a TENS unit. A TENS unit is a transcutaneous electrical nerve stimulation device which sends small electrical currents to targeted body parts for therapeutic purposes (There are certain kinds that are safe for home use.) It is managing my pain quite well.
At one point there was an overlap in my paperwork for my PT and my pain returned tenfold. My doctor put me on steroids and pain meds and straightened out the paperwork issue. I decided on my own after much research to begin taking 100% organic liquid drops of CBD Oil. It has helped me so much that I have been able to come off some of my meds. I don’t know if this is okay within our community, or with my doctors, but it has been a Godsend.
I was raised to be independent and if there’s a problem, you find the solution. I saw a problem with us CHD’ers in the Carolinas, feeling like we’re alone in our journeys, so I created and now run a Carolinas based CHD Support group for heart warriors of all ages and their family members and caretakers are welcome, as well. (CHD Hearts of the Carolinas on Facebook.) My group is now up to 460 members. I try to post uplifting things to remind us heart warriors that we’re strong survivors and that our families and caretakers are amazing people. Sometimes I blog and sometimes I vlog. (You can find me at Healing Hearts Under the Carolina Moon on Facebook.) I just don’t want any of us Carolinians to feel alone, which is the entire reason I began the group. I don’t want any more families feeing left in the dark about their child’s diagnosis, prognosis, or anything. We have too far in the future for anyone to be in the dark. My group is the light that I try to let others see.