Why Pregnancy Represents a Void in My Life

Why Pregnancy Represents a Void in My Life

In Life with PH

Last week I had to have an ultrasound done on my pelvic region. I have always had very difficult periods, so my family doctor finally sent me to have some tests done to rule anything out (such as an ovarian cyst). The tests sucked for a multitude of reasons. Yes, the internal ultrasound hurt but that wasn’t the worst part of the exam.

Rewind to a few months after being diagnosed with pulmonary hypertension. I was sent to an obstetrician office to discuss birth control methods.

The office was not set up to welcome a patient like me: A patient who just found out they had pulmonary hypertension. Someone who just found out that they had a lackluster life expectancy, and felt like a carton of milk that was starting to stink. Someone who was just given so many losses by a disease that they had never heard of. I had to say goodbye my career, after just starting it, just after finishing five years of university. I learned pregnancy would more than likely kill me. In an instant, everything I had to look forward to was gone.

I sobbed in the waiting room, surrounded by pictures of babies the doctors had helped to deliver. I cried in the office talking to the doctor about my birth control options. Did most people who came to her office need permanent birth control options? All the women I watched come in and out of the office were pregnant. I cried on the way home. I went home and curled into a little ball and tried to mourn my losses.

That brings us back to last week. My doctor sent me to a fertility clinic to have my tests done. I sighed as I looked at the advertisements for the clinic on the waiting room TV, watching a pregnant woman waddle out of the waiting room. Here I was, surrounded by people who were pregnant, or were taking steps to get pregnant. One of these things here doesn’t belong, and it’s me.

I went back to the dimly lit exam room. I stared at the ceiling and teared up while I had my exterior ultrasound. I thought about how most people at this office were seeing their babies growing within their belly. I was there to make sure I don’t have ovarian cysts.

When I’ve expressed to a few people that not being able to have children is a very difficult topic for me, I’ve been asked “you’re not over that yet?”

No. I am not.

PH is the reason ‘pregnancy is a void in my life’

As a young adult, I worry that this loss might ache more and more, like a tooth that needs to be pulled, as I watch more and more of my friends grow up, get married and have children. I am not over it. I’m not sure when, or if, I will ever be over it. Pulmonary hypertension took away my ability to make many important choices in my life. What kind of house I will live in. Whether I will have kids. Whether I will feel guilty being in a relationship. When I will retire. Whether I will have children or not.

For me, pregnancy represents a massive hole in my life.

It represents all the losses pulmonary hypertension puts upon my life. It is the agent for not having any permanent roots. I feel like I am like a leaf blowing through life, instead of a mighty oak tree firmly planted in the ground. It signifies all the losses in my life. I’ve lost my career. I’ve lost the future I had worked so hard to obtain. I’ve lost many of the goals I was working toward. I’ve lost the ability to plan my life, or live my life, as a normal 20-something year old.

Adoption, something I longed for, has now become a giant question mark, because I don’t know where I will be by the time I am ready to have kids. I also don’t want to start a family and have my body crap out. Do other people my age have to worry about whether they will be alive or not within the next several years? Pulmonary hypertension is like a hurricane that went through my life and left a colossal void among the wreckage. I’ve tried my best to repair, but of course I wish things could have been how I thought they would be. Part of me still aches and optimistically hopes that my life still can be.

It’s a lot.
It’s heavy.
It’s hard.

I’ve tried very hard to adapt to my new life, but no, I am not over it. Not yet, anyways.

Note: Pulmonary Hypertension 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 Pulmonary Hypertension News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.

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  1. Lynda Gettier says:

    This is such a hard topic for women with PH.I am so sorry that you have to go through this as well. We have a group on Facebook called Dealing with PH as a Woman. You are more than welcome to join us.It is a place where we can support each other as women and discuss things like this without being afraid. I saw a need for such a group and that’s why I began it. Beautiful article.

    Lynda Gettier

    • Hi Lynda,

      It is a difficult topic for sure- I imagine it is difficult for men as well, or women with PH who already have children. Living with a bunch of uncertainties and red tape can really make it difficult to navigate through life. That sounds like a wonderful idea for a support group! Thank you for letting me know about it 🙂

      Kind regards,


  2. Zara says:

    No one should tel you to get over it… People don’t understand, especially when it’s people we are close to.
    This issue is the void in my life too. We can only hope and pray that somehow our dream will come true…or that we will come to be at peace somehow.
    It’s shitty and makes me angry too.

    • I am sorry to hear that this is a void in your life too. I know people mean well when they tell us to “get over it” but no amount of counseling makes those voids go away. It is a really challenging thing to be at peace with for me just because it represents so many loses in my life. I hope your dreams come true <3

  3. Joanne Sperando says:

    Thanks for sharing Serena. I got diagnosed at 34 in 1998. 3rd person in my family to get PH. I knew that it meant ‘no kids’ right away. you’re not alone. I could’ve been another one of those women in the waiting room. I wish I could tell you that you do get over it, in time. but grief is not a straight line. Halloween is particularly hard for me, seeing all the little ones in their costumes. I handled my grief by spoiling my nieces and spending a lot of time with them. My brother, who also had PH, told me to think of them as mine too. I’ll always be grateful to him and my sister in law for allowing me to be with them so much. Hang in there and reach out when you need to!

    • You are so right about how grief is not a straight line. It is a different process for everyone. I am glad to hear that you have found ways to deal with your grief, and I am happy to hear that you have some special little ones in your life. I got a 5 year old Boston Terrier last year to help me with my grief 🙂

  4. Judy Walton says:

    Our daughter died 8 months ago and her greatest sadness was that she could not have any children. She was the most wonderful person and gravitated to any child around. She was an early childhood teacher. Philippa had a wonderful friend who had an unexpected baby and she became a surrogate mother and we had this little angel to sleep over at least once a week. He is our grandchild as well. It filled that huge void. He adored philippa and talks to her star every night. Ph affects the whole family and we feel the pain as well. Take care.

    • I am very sorry to hear about the loss of your daughter. As you said, the heaviness of pulmonary hypertension is felt by the whole family. I am glad to hear that she was given the chance to be a mother, and that you now have a grandchild. Wishing you and your family all the best <3

  5. Mary says:

    Thank you Serena for sharing your story. Life with PH is very difficult, especially not knowing how long you will be here. My family has had to adapt to a different way of life for me. What hurts the most is that they suffer the consequences of my diagnosis. I just hope that one day life will change for the better, for everyone diagnosed with PH. Have faith Serena and thanks again for sharing your story.

    • Thank you for taking the time to read, and comment! It can be very challenging to live with so many uncertainties that PH brings with it. It is certainly hard on the patient, and the entire family and support system. I hope that one day we will all be living better lives with PH as well. Thanks for the kinds words. All the best!

  6. Kaitlyn says:

    Hi, I was diagnosed with PH on my sixth birthday, I’m seventeen now. Thank you for sharing your story. I always thought I was the only one who was worried so much about having kids. My family let me talk about what I wanted in my future (including kids), but they never told me I couldn’t have them without dying. My doctor told me last year when I mentioned how I wanted my future to be like. It was heartbreaking, so I feel your pain and I am so sorry that you have to suffer that pain. Have faith and stay strong. Thank you again for sharing your story.

    • I am sorry you had to find out that way. I’ve spoken to and have interviewed several women who have had biological children post their PH diagnosis. It is usually advised against because of all of the dangers, but doctors are learning more about PH and pregnancy. Who knows what will happen in a few more years in terms of treatment options for us PHers! I feel your pain as well, and I am sorry to hear that you have to face all of these challenges as a teenager. You sound like one amazing young lady! I am wishing you all the best, and hope that all your dreams come true even if you have to find a different way to make them happen 🙂

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