Fighting to Get the Health Care I Need and Deserve - by Crystal Messer
My name is Crystal Messer, and here is my story. I'm a 41-year-old female with Turner syndrome (TS). I was diagnosed when I was 9 years old. It was actually an ENT doctor that helped me get diagnosed. I had many health issues, especially with allergies and my ears.
My Dad was tired of getting the same run around with our local doctors not helping me, and blaming my parents for my problems. He made me an appointment with a different ENT in New Albany, IN. He looked at my ears and my medical history. He told my parents there was something going on. He referred us to the pediatrician his grandchildren went to.
We made an appointment with her, Dr. Cynthia Nassim. She did a full body check up on me. She thought I had TS and sent me to the hospital for all kids of tests. One was a karyotype test. There were labs, and X-rays. The tests came back and confirmed I had TS. My pediatrician met with my parents, grandparents, and my sister and brother.
I was referred to an endocrinologist, Dr. Michael Foster, in Louisville, KY. He started me on growth hormone shots. I took those until I was 16 years old. When I was 12, he started me on hormones to start puberty. I was referred to a pediatric cardiologist and a gastroenterologist. I was diagnosed with a coarctation of the descending aorta, and also had 5 bleeding ulcers and a cyst. My heart was not repaired. I was put on medication for my ulcers. I finally had to get a Nissen fundoplication when I was 12. After that, my ulcers healed, and my cyst went away.
My heart was monitored, but not repaired. When I was diagnosed with TS, I was told I wouldn't be able to have children. At that time, being only 9 years old, I really didn't think much of it. I had problems with my blood pressure as a teenager, but my heart was not repaired. I was placed on blood pressure medication. At age 16, I was switched over to birth control pills.
I didn't start to suffer mentally from not being able to have children until around 19-20 years old. I thought I would never marry. Never say never! I met my husband at church when I was 24, and we married August 13, 2005. I went through a stubborn phase about taking my medicine. I actually quit taking any medication except for one blood pressure med.
I became too complicated of a medical case when I was 19, and was let go from my pediatric endocrinologist. I started to see the endocrinologist my Mom went to for her diabetes. She told me I just had insulin resistance. All I needed was to start taking Metformin and I would be able to have a child. This is why I didn't want to take medications - so I could have a child. (editor’s note: this is false)
I ended up seeing a gynecologist who specialized in infertility. He started me on Clomid, but my levels never raised. So, my husband and I went to a reproductive specialist in Louisville, KY. He just laid everything out on the line. He said my uterus could hold a child. My ovaries were what they call streaked. He didn't know how well my eggs would do being fertilized with my husband's sperm. He was afraid there would be a lot of genetic issues with my eggs. Also, he would not clear me for IV fertilization because of my heart. It had not been repaired.
So in 2010 my husband and I became foster parents. We adopted our three sons who are biological brothers. In 2014, I had a major cardiac event. I went into a-fib. My heart was running a marathon and would not slow down. My ejection fraction was down, and my heart was weak. I was put on all kinds of medication to keep my pulse and blood pressure down. I also started taking blood thinners.
I got to feeling better. I had become an LPN in September 2007. So, I had an idea of what was going on with me. I continued to work, and my heart got stronger with my meds, but not repaired. I've continued working as a pediatric home health Nurse.
My family moved to Texas in 2018 for us to attend Brown Trail School of Preaching in Bedford, TX. We finish with that and moved back to Indiana. Then Covid hit. I got Covid-19 the first time in October 2020. I was in the ICU for 7 days, and sent home with oxygen. I got better and went back to work. In January 2021 we accepted a position as house parents in Corinth, MS. Everything was going well, until I had a heart attack at the end of March. I had two stints placed. My widow maker was 95% blocked, the big one by it was 90% blocked. I was fortunate to survive. My heart had to be shocked or inverted back into sinus rhythm.
I got home from the hospital and a week later I got Covid for the second time. I was able to stay out of the hospital and recovered at home. We had to step down from our house parenting job. We stayed in Mississippi. My husband started working at Caterpillar, and I started my cardiac rehab. I finally finished my cardiac rehab at the end of July 2021. I was able to finally get my first Covid vaccine. A week later after my vaccine, I get Covid for the third time. I ended up hospitalized for three days. It weakened my heart, and it had to be shocked into sinus rhythm again. I was sent home with oxygen.
We ended up having to move back home to Indiana so we would have family to help us with our boys, and me. During all this, I was placed on all kinds of meds. My cardiologist in Mississippi would not fix my heart. I got an appointment with my cardiologist in Bloomington, IN. He said I needed to get my mitral valve fixed, and a heart ablation done. He sent me to a valve specialist. I got a stress echo done. He says it confirmed severe mitral valve stenosis. He ordered a TEE, and heart cath.
He referred me to his associate, a thoracic surgeon. My first appointment with him was in March of 2022. I'm was thinking I would get scheduled for open heart surgery. This doctor comes in and says I really don't know why I was referred to him. He says my pressures in all four chambers of my heart are way elevated. He said surgery would do me more harm than good right now. He thought my pressures were elevated due to my TS and hormone imbalance. He said he would help me get referred to a endocrinologist that specializes in TS, and a cardiologist that specializes in congenital heart defects. He said he would see me in 6 months to make sure followed up with someone.
I was so frustrated, and still am. Then the next day the thoracic surgeons nurse called me. She said they couldn't find an endocrinologist and cardiologist that specialized in Turner syndrome. They referred me back to the endocrinologist I see now to help me, but the thoracic surgeon wants to order an MRI of my heart. So, for now, I'm waiting for the call to get an MRI of my heart scheduled. I'm also looking to the Turner Syndrome Society to find doctors that will help me.
So, I'm 41 years old, and still don't have my valve replaced and fixed. I'm just hanging on the love and support of my husband, family, and friends. I will keep fighting to get the health care I need and deserve. Sending much love and blessings to you all!