Pulmonary Hypertension News Forums Forums BioNews Content 30 Days of PH 2022 Day 15 of #30DaysofPH: My Experience With Genetic Pulmonary Hypertension

  • Day 15 of #30DaysofPH: My Experience With Genetic Pulmonary Hypertension

    Posted by jessie-madrigal-fletcher on November 16, 2022 at 6:36 pm

    This is Sarah Beth Shingler’s story: 12 and a half years ago, her family first heard the words “pulmonary hypertension” when Sarah’s sister was diagnosed. Seven years and three months later, they would hear those words again when their cousin was diagnosed. Eight months after that, on March 18, 2019, Sarah was told, “You have PH.”

    Sarah has had to let go of some of her dreams to travel, get married, and run the Boston Marathon. But she still dreams of owning a Doberman pinscher, a Sphynx cat, and of being able to soak in a bathtub again. She has also decided that she is going to get her Master of Social Work.

    “I want to live in a world where patients can say, ‘I used to have PH’ without needing a lung transplant.”

    Sarah, your dreams are an influx of positivity!

    Now back to our PH Community: What do you dream of doing?

    To read the rest of Sarah’s story, click here.

    Our #30DaysOfPH initiative is running for the entire month of November. Each day, we are featuring a different story, and a different view of life with PH. To read all of the stories, visit our website.

    jen-cueva replied 1 year, 4 months ago 3 Members · 7 Replies
  • 7 Replies
  • Colleen

    Member
    November 17, 2022 at 11:59 am

    @sarahbeth31819 I can’t imagine how devastating 3 PH diagnosis have been for your family. Have other people in your family been tested as a precaution?

    Thank you for sharing your story! I too dream of a day when PH can be cured without the need of a transplant.

  • Sarah Beth Shingler

    Member
    November 17, 2022 at 1:23 pm

    Thank you so much for letting me share my story!! The only person that I know of who has been tested has been my niece, AND THANKFULLY SHE DOES NOT have the gene.

     

    • Colleen

      Member
      November 18, 2022 at 8:37 pm

      @sarahbeth31819 what a HUGE relief that must have been to hear that your niece does not carry the gene.

      Cullen’s PH was idiopathic. We were all tested and the gene didn’t show up. However, Cullen’s thought is that the gene starts with someone, and he is now the someone, so he worries about that. Even though his brother doesn’t have the gene Cullen is concerned for future children his brother might have. He’s just so afraid it’s in the family tree now, especially since there was no known cause for Cullen’s PH.

      Does anyone else worry about this whose PH is idiopathic?

  • Sarah Beth Shingler

    Member
    November 19, 2022 at 6:03 pm

    My sister was first diagnosed with Idiopathic Pulmonary Hypertension because no one else had it. We think that our grandmother on our paternal side had it, and it was PH that she died from. She died so young, and of course we don’t have her medical records, so we will never know for certain. My father, passed away 6 years ago and he was devastated when my sister was diagnosed, I don’t think he could have handled it if I was diagnosed. But after watching my sister go through the horrific side effects of Remodulin SUBQ, I choose not to have children for fear of it being genetic.

  • jen-cueva

    Member
    November 21, 2022 at 12:47 pm

    Hi @sarahbeth31819, this must have been shocking when you were diagnosed with PH. First your sister, then your cousin. Do you find that it helps y’all manage better with your close bond and watching one another go through this journey?

    Your t-shirt that says, ” Oh Honey, I Am That Aunt.”- I LOVE!

    I respect your choice not to have kids because you would be scared to pass along the gene. However, this must have been a difficult choice for you.

    Is that your car in the pic? Too cute!

    Your career must be tough but rewarding as you advocate for those in domestic violence situations. That’s awesome!

    Thank you so much for sharing your PH story.

  • Sarah Beth Shingler

    Member
    November 21, 2022 at 2:48 pm

    Technically it is my car, the car is “Suzanne” and it is my boyfriend’s, but it is my favorite car so therefore she is mine. My boyfriend Greg took the picture and when I was in the hospital, sick from the side effects of Remodulin, sick of being in the hospital, and sick of PH, he sent the picture to me and said “What’s better than having a hot car,a hot girlfriend to ride with.”

    It was such a shock our Mom was in denial when I was first diagnosed.

    Having children was never really a priority in my life prior to my sister being diagnosed, then after she was diagnosed it was NOPE. And I have to say that has never been the hard part of having PH.

    The hardest part for me is knowing that I can never go see Mount Everest, which I have always wanted to do. I started planning a trip to Nepal and was supposed to go in 202o to Everest Base Camp. I was planning on doing a hiking tour of Scotland, another place I have always wanted to visit but probably won’t be able to because of PH. I wanted to hike the Appalachain Trail in sections with my best friend in, and now I can’t.  Going to the beach with my family this year was pointless because I can’t get in the water becaue of IV Remodulin.

    I hate the cost of PH medication, I hate the cost of medical bills, I hate there isn’t a cure without a transplant.

    • jen-cueva

      Member
      November 22, 2022 at 11:54 am

      Hi @sarahbeth31819, that’s too funny about the car. I love the name Suzanne. He is fortunate to have both a hot car and a hot girlfriend. That’s so cute. The way you mention he sent that pic to you while in the hospital tells me he is supportive. That’s always a plus!

      I can’t imagine the denial and heartache your mom went through once you were diagnosed. Did this improve in time?

      Not having children is certainly a personal choice, and that is one less thing you need to worry being you don’t want children. But I can feel the grief you are struggling with and not knowing if you’ll ever reach those dreams. Since my PH diagnosis almost 18 years ago, some goals have been achievable with a few adjustments.

      We all can relate to hating the cost of our PH treatments and the medical bills that come along with PH. Thanks so much for sharing some of your PH story.

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