Due to possible PNH treatment, I decided to freeze my eggs
Reacting to rare blood disorders in order to have children down the road
When I was growing up, I always played with dolls. Some of them came as a package deal with a husband and kids. I’d name the kids and care for them as if they were my own. I also grew up with Cabbage Patch Kids and would carry them around the grocery store when I’d go with my parents.
I’ve wanted to have kids for as long as I can remember. I aspired to be a mom and take care of my kids with the same maternal instincts I had as a 5-year-old.
When I was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH) and aplastic anemia, both rare illnesses, it forced me to try to figure out my future. As I tried to plan my future life as a sick young woman, I couldn’t envision it without having kids.
For example, when we discussed the possibility of me having a bone marrow transplant, my first thought was how I would protect my future children.
I had several conversations with my doctor about what I wanted for my future. That led to my decision to freeze my eggs for later use in in vitro fertilization (IVF). Even though it was another procedure I’d have to deal with, it was important to me. I needed to know that it was still possible to have kids of my own.
I sat down with a fertility specialist to candidly discuss my life and fears. He was compassionate and understanding and knew how important this particular step of my health journey was to me. As we devised a plan, a big question I had was whether the process would affect any of the treatments for my blood disorders.
At the time, I was taking anti-thymocyte globulin, an immunosuppressive drug. After doing some research and speaking with my OB-GYN and hematology specialist, my fertility doctor concluded that my fertility journey would not disrupt my blood disorder treatments.
That was music to my ears. We could then move forward with freezing my eggs.
A weight off my shoulders
During that process, I gave myself daily shots for two weeks to increase the number of eggs that could be retrieved. Every couple of days, I had a fertility appointment where a nurse conducted an ultrasound to look at how many eggs were in my uterus.
My doctor wanted to make sure we had plenty of eggs to retrieve because some of them wouldn’t survive the retrieval process. I was in my 20s then, a detail my doctor took into consideration, because the younger you are, the higher the chance of retrieving quality eggs.
After two weeks of shots and appointments, it was time for the retrieval process. I was happy to learn that my doctor retrieved 13 eggs, and 11 made it to the freezing stage.
This was a weight lifted off my shoulders. This big step helped to ease my worry about having kids in the future. I could focus all my time on my health without this concern clouding my perspective on things.
As I wait to have kids of my own, my eggs are being stored in a long-term facility. When the time is right, I’ll retrieve them and and start the process of having a child through IVF.
I can’t wait to tell my future kids about the planning that went into this long before they were born. Life comes with roadblocks, and it takes a lot of determination, persistence, hope, and dedication to continue fighting for what you want.
If you are a young person battling health issues and are worried about the future, I hope this column speaks to you.
Note: PNH News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of PNH News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to paroxysmal nocturnal hemoglobinuria.
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