Flash forward to October 2009. At the time, my hubby and I had been married for 6 months after dating for 4 and a half years. We knew that having a baby naturally might be hard because on top of the CMT I have Polycystic Ovarian Syndrome (PCOS). We also knew that our kids had a 50% chance of having CMT. My case didn't seem too bad, but each generation tends to get worse. Most cases of CMT are very serious.
We decided that instead of running that 50% chance, we would do IVF and have the embryos screened for CMT. I know that this may be a tricky topic for some people, so I won't go into it anymore than that.
We set up an appointment with a somewhat local (1.5 hours away) reproductive endocrinologist (RE). He told us that I would have to be genetically tested to determine the type of CMT that I have. Apparently there are many types CMT, some much more severe than others. So off to a Neurologist I go. Did I mention that CMT is a Neurological disorder?
After some testing the doc said she didn't think that I have CMT so she wouldn't prescribe the genetic testing. We were stunned and didn't believe her so off to another doc in another state who has more experience with CMT. HE also said he didn't think I had it, but since we wanted kids, he prescribed the genetic testing. Without insurance, this would have cost $15,000!!! Thank goodness it was covered!
The results took 3 weeks! And it turns out that I DO NOT have CMT!!! Can you say "Holy life changing news Batman?" We no longer had to do the IVF. I no longer had to look at a future that probably includes a wheelchair. All I can say is that my life changed in an instant, with one email from my hubby. He called the doc and got the results. I had trouble believing it. I called my family and they were all happy, but no one seemed to understand what it meant to me. Their lives hadn't changed so they couldn't understand. My hubby understood. His life had changed too. I told him long before we got married that I could end up in a wheelchair. I could end up completely disabled. He knew the fear that I had been living with. I am an artist. I may never have my own art show, I may never have a piece in a museum, but art is still my life. What if I lost the use of my hands because of CMT. That was all gone now. For almost 20 years I worried. 20 years of worries erased in a day.
It was the best news of my life and yet it left me questioning everything.
But since we didn't need to do IVF, we started trying for a baby right away. No more birth control pills for me. I had seen my endocrinologist (regular, not reproductive) and she said my testosterone level and insulin levels looked good. They were both in the normal range. For someone with PCOS, this is a big deal! I had been on Metformin for about 6 months (this time) and it seemed to be helping. So I was optimistic that I would start cycling on my own after I went off the birth control.
Once again flash forward to October 2010. Almost a year with no cycles. Maybe the Metformin wasn't helping after all. So back to the RE we go.
We decided that instead of running that 50% chance, we would do IVF and have the embryos screened for CMT. I know that this may be a tricky topic for some people, so I won't go into it anymore than that.
We set up an appointment with a somewhat local (1.5 hours away) reproductive endocrinologist (RE). He told us that I would have to be genetically tested to determine the type of CMT that I have. Apparently there are many types CMT, some much more severe than others. So off to a Neurologist I go. Did I mention that CMT is a Neurological disorder?
After some testing the doc said she didn't think that I have CMT so she wouldn't prescribe the genetic testing. We were stunned and didn't believe her so off to another doc in another state who has more experience with CMT. HE also said he didn't think I had it, but since we wanted kids, he prescribed the genetic testing. Without insurance, this would have cost $15,000!!! Thank goodness it was covered!
The results took 3 weeks! And it turns out that I DO NOT have CMT!!! Can you say "Holy life changing news Batman?" We no longer had to do the IVF. I no longer had to look at a future that probably includes a wheelchair. All I can say is that my life changed in an instant, with one email from my hubby. He called the doc and got the results. I had trouble believing it. I called my family and they were all happy, but no one seemed to understand what it meant to me. Their lives hadn't changed so they couldn't understand. My hubby understood. His life had changed too. I told him long before we got married that I could end up in a wheelchair. I could end up completely disabled. He knew the fear that I had been living with. I am an artist. I may never have my own art show, I may never have a piece in a museum, but art is still my life. What if I lost the use of my hands because of CMT. That was all gone now. For almost 20 years I worried. 20 years of worries erased in a day.
It was the best news of my life and yet it left me questioning everything.
But since we didn't need to do IVF, we started trying for a baby right away. No more birth control pills for me. I had seen my endocrinologist (regular, not reproductive) and she said my testosterone level and insulin levels looked good. They were both in the normal range. For someone with PCOS, this is a big deal! I had been on Metformin for about 6 months (this time) and it seemed to be helping. So I was optimistic that I would start cycling on my own after I went off the birth control.
Once again flash forward to October 2010. Almost a year with no cycles. Maybe the Metformin wasn't helping after all. So back to the RE we go.
Yay!! I am so glad you have a blog!! I am really looking forward to being able to stay more up-to-date on how everything is going for you. I think of you guys everday and am horrible about texting. I am sure I probably didn't even begin to express how happy I was for you that you didn't have CMT. I can't even imagine what a relief that must have been!! So sorry you had to have all those years of worry! We're here with you in the whole TTC process, rooting for ya! You guys are gonna be awesome parents!
ReplyDeleteWow what news! I can't even imagine how you felt! This is incredible!
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