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My reality as someone living with primary ciliary dyskinesia

Mikaela discusses the trials and tribulations a person with primary ciliary dyskinesia might face when trying to conceive.

From my earliest memories of life, I have always been sick and knew I had a disease—it was my normal. But it wasn’t until I was 14 years old that I was told I had been misdiagnosed at birth. My entire idea and understanding of my health completely changed and I felt like I had zero knowledge of my own body.


It would take a year and a half until I was properly and finally diagnosed with primary ciliary dyskinesia (PCD).


By that time, I was a month shy away from my 16th birthday. Unlike my peers and all of my friends, I wasn’t preparing for the big anticipated sweet 16—thinking of how I was going to celebrate or feeling excited to finally learn how to drive and get my license was the last thing on my mind. I was instead trying to process all that I had been through in the last year and a half. I was processing the news I had just received over the phone regarding the results of a blood test I had roughly 8 months prior. It turns out I had a rare genetic lung disease.

It wasn’t necessarily “new” to me to know that I had a disease that affected my lungs, I had always known that. Although not the correct lung disease, I was always aware that my breathing and condition of my lungs were abnormal. For example, I experienced a consistent wet cough, coughing up sputum, being congested in my chest and sinuses, infections after infections, always being and feeling sick, taking inhalers, being out of breath, even at times having pneumonia. That has always been my “normal” everyday life.


What was new to me was learning this disease I was just diagnosed with would also affect my reproductive system.


Being told at the age of 15 that you might never be able to have children, or that it would be incredibly hard to conceive, and if you are able to conceive you are at risk of having an ectopic pregnancy is a feeling I cannot describe.

I had never even heard of the term “ectopic pregnancy” before then. Of course at 15, I was not already thinking about having children, but the thought of never being able to consider having children of my own as I got older was very hard to process.

I remember pretending like that news didn’t bother me because I feared that my parents would take it poorly. I didn’t want them to be upset or hurt thinking I could never have kids or that they would never be grandparents. I think in a way, attempting to brush it off as “not a big deal” was my way of trying to protect myself at the time. I had just spent a year and a half constantly receiving bad or scary news about my health and wellbeing—I was mentally exhausted and I could not bear to hear anything other than something positive.


Throughout the following years, my endless appointments with specialists proceeded with most of the focus being on my lungs and sinuses. This would mean routine breathing tests to check my lung function, working with doctors doing physio on my lungs, breathing exercises, taking all different types of inhalers I had never even seen before, a plethora of different medications and intimidating looking pills, treating infections and attempting to keep my lungs as healthy as they can be and essentially trying to play “catch up” for the 15 years that my disease went untreated, which had inevitably caused irreversible damage to my lungs. During this time, the effects on my reproductive system was not often discussed which only made it easier for me to avoid having to think about it.


But now as I got older, I found myself constantly being asked “so when are you going to have kids?” more often than not, I am sure most women my age (21) or similar can relate to this, where the topic of starting a family is brought up pretty frequently. It’s only until recently, as I entered my 20’s, that I have finally allowed myself to really stop and think about that news I got six years ago and the reality of my chances of being able to conceive. The challenges await.


As a young girl, I always had dolls and stuffed animals that I loved to “take care” of. I even had the dolls that came with fake baby bottles, diapers, little outfits, the baby stroller, the whole thing. I remember always making sure my stuffed animals and build a bears were tucked in every night and kept warm. I would say goodbye to them before I left the house or would make sure they came along on family trips and car rides.


Like most young kids, these toys meant so much to me and I saw them as real, with feelings and needing safety and protection. They were like my own babies. Thinking back to these childhood memories, I can’t help but feel sadness for myself when I am reminded of my reality. I feel immense sadness and fear for my future self that I might one day want nothing more than to start a family.


In my teenage years and especially after I was given my diagnosis I always spoke about never wanting children as an attempt to make it less scary for me to face my reality because of my chronic illness.


If I say I never want children then I cannot “lose” or be disappointed. I won’t be able to hurt and I would have a sense of control or power over my disease.

But truthfully I have always known how I really feel deep down, which is when the time comes to successfully and safely be able to conceive.


That leaves me with the heavy question of ‘what if I can’t?’ What if I will never be able to conceive, or what if it is extremely difficult and just another exhausting, scary, daunting and overwhelming medical journey with more time spent in hospitals and seeing doctors and specialists? What if I experience an ectopic pregnancy? What will that mean? How serious might it be? How potentially life threatening? These thoughts circle my mind, and the mind of others who face this scary and unpredictable reality.


If I am able to conceive, whether that be naturally or with help, even then there are still risks and issues. I would then have to meet with doctors to discuss the health effects becoming pregnant could cause me to experience.


Becoming pregnant would mean potentially causing more harm to my health. Because I have a rare disease, there is little research, so of course maybe one day, medical professionals will learn that the chances of people with primary ciliary dyskinesia conceiving a baby is higher than they thought, or that there will be more options, treatments and information available. No one person is the same and that goes for people with chronic illness too. Everyone's bodies are different, therefore some women with PCD might have found little to no challenges regarding pregnancy which is incredible. However, I know there are women with my disease that have much different stories and experiences.


I feel fearful wondering which experience I will have as PCD and its genetic factors can have little to no information. Living with a PCD can feel scary and unpredictable that come with many challenges, like difficulty conceiving, which can feel extremely frustrating, exhausting and lonely.

My only hope is that when the time comes for me to start a family that it comes with ease, but realistically I know that might not be my reality. Although I can't be certain until then, I understand my reality and have finally come to a place where I can say that I have accepted and embraced my disease and all of the challenges it may bring. As for chances and ability to conceive, I look to the future with fear and uncertainty, but also hope and excitement for new research and treatments to come with the help of raising awareness for PCD. I dream of celebrating better conception odds, more knowledge and more doctors and people becoming aware of primary ciliary dyskinesia. I hope that one day, the dream of my younger self who was taking care of her stuffed animals and wanted to start a family can be actualised and I can have children of my own....

 

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