December 21, 2013 is the day that forever changed the course of my life.
On this day, I was told that I had Pulmonary Hypertension. I had never heard of this disease before, and chances are you haven’t heard of it either because it is fairly rare.
The news I received was bad, very bad. In addition to being rare, PH is also progressive, incurable and fatal. The doctor came into the room and announced that I have 5, maybe 10, years to live. I was only 25.
I looked out the window of the doctor’s office and saw many of my plans for the future floating away. I was immediately advised against pregnancy because of the high mortality rate associated with it for women with PH. I hadn’t even had time to process all my other losses.
In simple medical terms, Pulmonary Hypertension is considered a contraindication to pregnancy. Pregnancy for women with PH increases the risk of death for both the mother and child.
Almost every organ is affected by pregnancy. The most notable change is the increase in blood volume within the cardiovascular system, which is something that could be potentially fatal for someone with Pulmonary Hypertension.
Another issue is that many PH medications cause terrible birth defects — so if a woman with PH were to risk it and try to carry their own child, they might have discontinue some of the medications that are required to help slow down the progression of the disease.
Throughout this experience, my friends and family have assured me that although I am sick, I am still the same person. The truth is, you cannot go through something like this and stay the same person. It changes you.
Not being able to get pregnant because of a disease is very different than being infertile. Many of us with PH are fertile. If I were to get pregnant, it would not be a happy miracle (like most circumstances where someone cannot get pregnant due to fertility issues.) It would turn into a life or death situation.
Several months after diagnosis I was sent to see a gynecologist (at the recommendation of my PH specialist.) It seemed like every doctor was worried about me getting pregnant — as if I get pregnant as easily as one catches a cold.
At this point I was so sick I was using motorized scooters in the mall, relied on the help of my mother to change out of my sweat pants into my pajamas, and couldn't shower. Sexy, right?
I am very fortunate to have found an amazing soulmate who has stayed with me through all of this (and assure me that I am still beautiful) but there was no chill in our Netflix dates. Getting pregnant was just about as likely as me passing grade 10 math. (Spoiler alert — I didn't pass grade 10 math. Thanks a lot, Mr. Young.)
But throughout this experience, I have also realized how heavily society emphasizes being a mother to women. I have had friends ask me “Can you still have kids? Do you want kids? Do you plan to have any?” first thing after finding out I have a fatal disease.
Part of me fears that I will never be a good enough partner because I cannot provide a biological family, along with all the other worries associated with PH.
As my appointment approached, I called the gyno office in advance to warn them that it was simply too soon to talk about my situation.
The office was painted in soft colors that had faded over time in the dated office. To the right was a Fischer-Price child sized plastic house covered in sticky fingerprints. Behind the activity center was a collage of all the babies delivered by the doctors from the office I was in. The collage expanded across the wall, engulfing the entire office.
I watched pregnant women come in and out of the office. I realized that this was an office most women went to for something happy and joyous. It was not set up or designed for someone in my position. Instead it was a painful reminder of all the things I cannot have.
I slumped into a chair trying to hold back tears.
It is difficult to articulate the loss one feels over something they never had. I never had a child, nor did I lose one, but it felt like I had something very heavy to mourn.
Eventually I was called back to see a nurse for preliminary testing before I saw the doctor. It turned out the doctor I was supposed to see had a brain aneurysm and was off to recover. In her place was a doctor not much older than myself.
My previous phone call advising that it was too soon to discuss my current situation was out the window. She showed me different diagrams and pamphlets to ensure I never got pregnant.
I broke down and really started crying. I was ugly crying. She handed me a box of tissues and called me "sweetie." It was the first time it felt like a doctor could slightly understand what I was going through.
However, she still had a job to do. Her top recommendation was an IUD. I turned down all methods that contained hormones (I had almost had a stroke in the past because of birth control pills). I didn't feel comfortable taking any more medication, especially something that contained hormones.
I asked about having tubal ligation done, but she recommended that I stay awake for the surgery because anesthesia is usually avoided for people with PH. Um…no thanks, haven’t I been through enough?
I left the doctor's office that day with a bigger emotional wound.
At 27, I imagined I would be married and working toward having children in the next year or two. In reality, I live at home with my parents (if I call them my roommates, it doesn't sound as bad, right?) left my job, and alternate between sweat pants and actual pajamas.
I am not really sure what to do with my life anymore. Things get kind of scary when you feel like you don’t have a future to invest in, but I am trying to change the way I think.
I try to stay active, meditate, do yoga and I started a blog called the PHight or Flight Project where I showcase exceptional people with PH to help provide hope to newly diagnosed people and their families.
I have had the chance to speak to people who have had PH for over 20-40 years and are still kicking ass. Some of them have even adopted children!
Truthfully, finding out that I cannot get pregnant didn’t bother me that much. Getting pregnant isn't the only way to have children. There is adoption and surrogacy.
The biggest blow for me is feeling as if I should not adopt because I may not be here long.
It pains me to think I may not get to be the mother I want to be, or that I may not get to be here for all of the milestones. I wouldn't want my kids to resent me if I couldn't be there to see their first day of school or their wedding. Thinking about it now puts a pit in my stomach.
For me, the greatest loss isn't that I can't have biological children. The greatest loss is that I feel like I can't or shouldn't have a family. I can't invest in my future, because I don't know if I have one.