• kathleen-sheffer

    Member
    May 1, 2018 at 3:05 pm

    I always planned to adopt children because the risks involved with pregnancy and pulmonary hypertension far outweigh the challenges of adoption or surrogacy. As I’ve grown older, having children is less and less appealing, knowing the impact raising children would have on my time and energy. I’m happy being an awesome aunt!

    For many years, though, I struggled to accept this, worried my inability to bear children would affect my romantic relationships. As I’ve gained more experience with such relationships, I’ve gained confidence in communicating my desires and making sure my partner and I are on the same page. Has anyone else felt insecure about this issue?

    • brittany-foster

      Member
      May 1, 2018 at 5:49 pm

      Hi Kathleen,
      I too have felt this way and felt very insecure about not being able to carry my own child. I knew from age 18 that I would not be able to have children the “natural” way, because I had my tubes and an ovary removed. So, I always thought I would be doing IVF as a way to have a child. Turns out, all those hormones would not be good for me and the whole process would require a high level of hormone. The risk itself was just not worth it.

      There was a point in my life where I was willing to take risk (before even knowing about the PH I was high risk because of other genetic condition and and a heart condition) . When my boyfriend expressed his concern and the fact that if there were any risk AT ALL then I he wouldn’t want me to go through with it, I had to take steps back to evaluate everything for myself.

      There was such a high level of insecurity and fear when first talking to him about it. I questioned, will he still want to be with me? Will he be okay with adoption? I even have fears about adoption. I ask myself, will I be able to keep up with my children? How much stress will that put on my body every day? Will I even be able to care for them in ways they would need? These questions I think about almost every day, especially working with kids as a nanny. It really makes me think about my physical ability to keep up with them.

      Long post, I know. Definitely a lot to say on this topic. So important to talk about it.

      • kathleen-sheffer

        Member
        May 4, 2018 at 5:44 pm

        Yeah, it’s such an emotional and complicated issue. I had a very short-term boyfriend break up with me after learning I couldn’t have kids. Another expressed serious preference for biological children. I tried not to take it personally – it was their issue, not mine, and obviously the relationship was destined for failure.

        What hurt more was when I would share with female friends that I couldn’t get pregnant and they would continue talking about how they really want to have that experience. Ugh. It was frustrating and isolating so it is nice to talk to other patients who have similar limitations.

  • sarah-buck

    Member
    May 4, 2018 at 3:50 pm

    I got pregnant about a year after my diagnosis. My PAH is mild and well controlled. I had a wonderful team of doctors- OB, Maternal-Fetal Specialist, Pulmonologist and Cardiologist. By 25 weeks, I was extremely out of breath, my heart rate was out of control and was put on hospitalized bed rest for the remainder of the pregnancy. I had a C Section at 34 weeks under general anesthesia with a heart cath and in ICU for 2 days after delivery. It was not easy, but everything miraculously turned out ok. I had my tubes tied and will not be having anymore children.

    • brittany-foster

      Member
      May 4, 2018 at 4:34 pm

      Sarah,
      I’m so glad you were followed as closely as you were and received good care.i can only imagine that it must have been scary for you still! So happy that things turned out okay ! 🙂

    • kathleen-sheffer

      Member
      May 4, 2018 at 5:46 pm

      I really appreciate you sharing this experience. Good to know some of what is involved in having a safe pregnancy with mild PH. It’s important doctors know it is possible if they are willing to work with patients instead of just eliminating the option.

  • kathleen-sheffer

    Member
    May 4, 2018 at 11:54 pm

    This article just came up on my feed, and I thought I’d share it here, since we’ve got this conversation going.

    For a long time, doctors recommended women with PAH shouldn’t get pregnant because of extreme risks and a 35 to 57-percent mortality rate.

    But Dr. Zwicke at Aurora Sinai Medical Center has developed a protocol for treating pregnant women with pulmonary hypertension and has maintained a 100% survival rate: 170 women and 186 babies.

    • brittany-foster

      Member
      May 5, 2018 at 7:19 am

      Wow that’s awesome to know that there are people out there who are working so closely with those with PH . This gives a lot of hope for those who feel like it isn’t possible! Thank you for sharing this. 🙂

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