The decision did not save my parathyroids. Even though all four were left intact, they will not do their job, which is to regulate calcium - I have become part of the 1% that develops the rare disease hypoparathyroidism after a thyroidectomy.
I've struggled keeping my levels from reaching critical from the very beginning. I had severe tetany two days after my surgery, along with the laryngeal spasms (I couldn't breathe), and to be honest, I was terrified. Now, I'm relying on calcium infusions through a PICC line three times a week because I have malabsorption problems. I have developed gastroparesis (possibly low calcium related), which causes me to throw up my medicine a majority of the time. I am also in the beginning stages of thyroid eye disease. I never know what each day will bring.
Doctors aren't sure what to do with me. I feel like a science experiment most of the time. I couldn't ever have been able to prepare myself for this journey. I'm currently unable to work, pay for my medicine or doctor's appointments. Most of the time, I can't even drive myself to my appointments/infusions. My infusions cost money each visit. I finished college and right now, I can't even make my loan payments. It's only my mom and I, and her job isn't enough to support my added medical expenses, especially since she takes a lot of time off from work, taking me wherever I need to go.
All I have ever done since my Graves diagnosis was try to get my health back. Each step forward seems like ten steps back. I need to be with others who are like me, and experts who can help me. There is an opportunity this June to attend a three day conference in Sacramento with the most experienced doctors, researchers, Hypoparathyroidism Association members, other patients and much more. The answers I seek about how best to manage this disease may be found if I can attend this conference. There will be many different topics addressed such as hypoparathyroidism and bone health, how to protect your body from further damage, how this disease can affect other organs (such as kidneys), what NPS (a pharmaceutical company) is doing to help find new medicines to help us have a better quality of life, nutrition, possible up & coming parathyroid transplants, and of course, meeting other patients. My mom and I want more than anything to get out to Sacramento, but we will need a lot of help to get there. After attending the National Organization of Rare Disease conference this past March, I more than ever want to be at the conference in June. It was amazing to finally meet others like me. I learned more, heard others' stories, and of course, cried a little.
At 22, I had my life at my fingertips. I was ready to take on the world. Now almost 24, I fight four diseases with no cure. Hypoparathyroidism has unfortunately been the hardest to fight. This is one of my only chances to be with the top doctors and experts in this very small and rare field. Please help me get to Sacramento! I would be forever grateful.
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