The past two weeks have been a challenge. I started a new school year at a new school in a new grade level. We had to learn a new gradebook, a new website hosting program, a new lesson plan system, a new curriculum and a new health insurance policy. Out with the old, familiar way of doing things and in with a new, uncomfortable way. I was balancing all this new stuff with my personal life and health. It's been tough and I wanted nothing new for a long time.
Due to a genetic disorder, Wermer's Syndrome, I have to get regular check ups, lab work, and scans. I had not been to an endocrinologist in over 2 years and that was a not a good idea since the whole basis of treating my condition is regular yearly prevention and maintenance. Since my husband and I are trying to conceive a child, we agreed it would be a good idea for me to go in and have things checked out.
I was so fortunate to have joined a facebook support group for individuals with Multiple Endocrine Neoplasia Type 1. I posted a question on the wall seeking a reference for an endocrinologist specializing in MEN1 in the Houston area. I got several responses including one that directed me to a doctor at MDAnderson Cancer Center. To clarify, I do not have cancer, but tumors develop and they are not treated then they can become cancerous and individuals with my condition tend to have a higher cancer risk. Their endocrine department has a team of physicians, physician assistants, and genetic counselors that specialize in this condition and follow over 100 families. I called and scheduled an appointment as soon as possible before our new health insurance policy started.
My appointments were scheduled for 2 days back to back during the first week of school. I protested and begged for any other week or time but it was not possible and you don't exactly blow off MDAnderson when you get an appointment. So I took a day and half off and prepared for them to run tests and tell me it was time for another parathyroidectomy. I've had them removed twice in the last 10 years so why not a third, right
I showed up for my appointments and met with a scheduler. They handed me an itinerary for all my appointments. I looked over it and noticed my appointment times had changed and they added a third day of appointments. My eyes bugged out, and I began to plead my case as a middle school teacher who is already leaving her 8th graders at the mercy of a sub, or vice versa. It did not work, and I realized I had to take it or leave it. I took it. I completed all the first day appointments and headed back to work when I was done and explained I would have to take 3 full days and not just one and a half and begin preparing for the second and third day of lessons for the sub.
After all was said and done, I had an MRI of the thymus gland, pancreas and brain. Blood work to check hormone levels particularly gastrin, insulin, PTH and calcium. And met with doctor and genetic counselor. Everything went well and nothing abnormal appeared.
The hardest part was the appointment with the genetic counselor to discuss my greatest fears and concerns and options. Even thought this was difficult, I left with information and options in regards to children. She shared with me that some couples have gone through Pre-implantation Genetic Diagnosis of embryos and then in-vitro. Some couples even compiled a report somewhat like a cost analysis that was submitted to insurance to compare the cost if they were to pay for PGD and in-vitro versus having to cover and pay for the treatments of a child with MEN1 until they were 25. She knew of one couple that was successful, so that gave me hope to possible try the same. Not that MEN1 is a death sentence and worst thing ever, but I just would not want my child to worry about this and have the expenses associated with this condition for the rest of their life. It's worth trying.
During this week, I also scheduled my hysteroscopy and HSG procedure in September for us to continue with trying to conceive. If the results turn out that in-vitro is the best option for us, then it will push us toward working with insurance to cover PGD along with in-vitro.
My biggest relief is knowing I do not have another surgery ahead of me. This was something NEW that was actually welcome. I had my last surgery only 5 years after the first procedure. It had been over 5 years since the second, so naturally I had expected it would be the same situation and time to go back in and take out more parathyroid. Now I can relax for a year or so until we perform tests again next year. My focus can be on creating a NEW addition to our family. I guess that's one thing NEW I am looking forward to.
The hardest part was the appointment with the genetic counselor to discuss my greatest fears and concerns and options. Even thought this was difficult, I left with information and options in regards to children. She shared with me that some couples have gone through Pre-implantation Genetic Diagnosis of embryos and then in-vitro. Some couples even compiled a report somewhat like a cost analysis that was submitted to insurance to compare the cost if they were to pay for PGD and in-vitro versus having to cover and pay for the treatments of a child with MEN1 until they were 25. She knew of one couple that was successful, so that gave me hope to possible try the same. Not that MEN1 is a death sentence and worst thing ever, but I just would not want my child to worry about this and have the expenses associated with this condition for the rest of their life. It's worth trying.
During this week, I also scheduled my hysteroscopy and HSG procedure in September for us to continue with trying to conceive. If the results turn out that in-vitro is the best option for us, then it will push us toward working with insurance to cover PGD along with in-vitro.
My biggest relief is knowing I do not have another surgery ahead of me. This was something NEW that was actually welcome. I had my last surgery only 5 years after the first procedure. It had been over 5 years since the second, so naturally I had expected it would be the same situation and time to go back in and take out more parathyroid. Now I can relax for a year or so until we perform tests again next year. My focus can be on creating a NEW addition to our family. I guess that's one thing NEW I am looking forward to.
