This topic contains 14 replies, has 5 voices, and was last updated by  Colleen Steele 1 month, 2 weeks ago.

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  • #19481
     Colleen Steele 
    Keymaster

    Prior to diagnosis you probably experienced shortness of breath and maybe chest pains frequently, but is there one specific episode that stands out in your mind? What was the experience that made you or a loved one convinced that something was very wrong? Did you experience a seizure or fainting spell or was it when you realized that you could no longer fully participate in something that you normally enjoyed?

    For myself and my husband it was when our child sat down on the soccer field while in the process of making a goal. He couldn’t breath, looked like he was going to pass out and he told us his chest hurt really bad. His inhaler seemed to make the situation worse instead of better. That’s when we started pushing his doctors more to look at something other than asthma.

    Share your eye opening experience with us.

  • #19485
     Brittany Foster 
    Keymaster

    Colleen,
    Even though I wasn’t officially diagosed, I’m going to have to say one of my worst experiences was when I passed out from walking outside when I was in the 6th grade. We were walking my grandma down the street at her nursing home and I can remember just seeing spots in front of me and all of a sudden getting very sensitive to things around me. When I got inside my face was pale and I blacked out and don’t remember much. The passing out was something that I had going on a LOT before it was daignosed and I can remember feeling tightness in my neck actually when this was going on and it felt hard to breathe. I can’t believe the amount of years I just “pushed through it”

    • #19490
       Colleen Steele 
      Keymaster

      It sad to look back on the pre-diagnosis days. We should make a topic for the, “Oh, that’s what that was,” pre-diagnosis moments. Mine was the ocean experience when my son had what we now know was a PH seizure.

      Your family must have been so worried about you through those early spells when they didn’t know what was causing them. You were so young yet so strong to just push through it the way that you did.

      • #19492
         Brittany Foster 
        Keymaster

        Colleen,
        What happened in the ocean to your son? I can remember that I almost passed out in the water one time. I had always been FINE in the waves and then when I was around middle school age I was in there with my friends and ducking under the waves and held my breath a few times. I turned almost like a popsicle because I was so cold all of a sudden, my lips were dark blue almost purple looking, and I felt like my throat was closing. I had to be rushed out of there and couldn’t even use my body to swim back, it was almost as if I was paralyzed. I vividly remember how scary that was and when you mentioned the ocean incident I wonder if it was anything like what I’m talking about?

      • #19498
         Colleen Steele 
        Keymaster

        Brittany,
        The paralyzed feeling sounds similar. He was 6 and we were at the Jersey shore for vacation. This was really early on before symptoms started alerting us that something was wrong. His dad and I were holding his hands as he jumped the waves. Suddenly he went stiff as a board and stared off into the sky. We had a hard time keeping his head out of the water and carry him back to the beach. It only lasted a minute or two and he was so confused. Because he liked to joke around a lot that’s what we thought he was doing but he kept insisting he had no idea what we were talking about. He had no memory of what had just happened. Two years later I mentioned it to his specialist and he said sounded very much like a PH seizure.

        It’s weird that you experienced something at the ocean too. I know another little girl who sadly has since passed away, whose first episode happened at the ocean. Her event was much more serious…a stroke I believe. It was PH related and up until that moment her parents had no idea she had PH.

        I wonder if the water temperature, sunlight and the waves hitting the chest contributes to the PH events?

      • #19503
         Brittany Foster 
        Keymaster

        Colleen,
        that’s really intersting ! It also amazes me that my symptoms really did progress and I noticed it in different things I was once able to do with such ease that all of a sudden started to feel worse and worse for me. Swimming and diving into the waves definitely was one of these things that became a lot harder for me especially with any amount of breath holding. Another thing that really woke me up to the fact that there was something more serious going on was going on roller coasters. I always LOVED them as a kid and had no fear about them. My cardiolgists always gave me the “okay” to do it so I DID. But, there was an experience I had when I went with a group of friends in high school and went on just one roller coaster, felt like I was going to pass out the whole rest of the time and my body felt like it was falling (like the roller coaster feeling) weeks later! So scary the things that we do when we don’t know there’s something serious going on with ourselves. Like we have talked about before, being able to play sports at all without any serious events (that unfortunately some children have) is a miracle in itself.

      • #19570
         Colleen Steele 
        Keymaster

        Brittany, roller coasters where a big no for my son, even before diagnosis. It was because of his Long Q-T. Suddenly being startled could literally kill him, so he had to quit thrill rides and sports. I seriously wonder if there shouldn’t be some research done about the risks of going into the ocean with PH. It sounds odd but I really want if there is something to it that can cause PH events.

        For what it’s worth, I’m glad you got some childhood fun in even despite the risks that you weren’t aware of.

  • #19559
     Robin Taylor 
    Participant

    Hi Colleen and Brittany! My first “event” wasn’t as scary as you have both reported, but more progressive then scary. I had a hip replacement in January of 2017. Prior to that I swam laps as my cardio, while I wasn’t super good at it, I really enjoyed it and it was something I could do under extreme hip pain. Fast forward, after surgery it was a rough recovery road and looking back, I realize a lot of what happened related to PH. Extreme swelling in my lower extremities, shortness of breath, etc. As I tried to do physical therapy for my hip, the shortness of breath was so weird. I went from swimming laps to barely making it through 10 minutes of cardio on the exercise bike. Then my blood pressure kept rising (I had always been on the low side of normal). I went to my NP, and she knew something wasn’t right, but we thought it was related to my asthma, so she started me on a nebulizer. Still couldn’t walk far without being out of breath. It finally all came down on me after a weekend at a friends house on a lake. There was a little mildew but I literally struggled for my breath most the weekend and at night I was scared to fall asleep, because I was wheezing so bad. I went to the the NP the following day, my fingers and toes were blue, my O2 was low 70’s and my wheezing was uncontrollable. We started down the path of a PH diagnosis that day. She ordered tests, sent me to be admitted to a hospital where they did the usual tests (Heart Cath, echo, etc…). Stayed almost a week, went home on 4L of O2 and the start of my PH meds. Thank goodness she didn’t mess around, and actually had a clue about PH…I have thanked her and God regularly since then! Side note: I started having problems on roller coasters the same as you describe after my son was born 25 years ago…maybe my first PH symptom?

    • #19571
       Colleen Steele 
      Keymaster

      Robin, your NP sounds wonderful! Thank God she was pro-active in figuring out what was really going on with you.

      I think what you went through does sound scary. Just the fear of going to sleep because you can’t breath is terrifying. You have been through a lot to get to your diagnosis. How is your hip doing now? Are you still able to swim?

      Thank you for sharing!

    • #19591
       Margie Novak 
      Participant

      Colleen I hear you about roller coasters! I love amusement parks and the one time I went to my heart doctor he asked if I had any questions and I said “yes, can I go to Kennywood (an amusement park in Pittsburgh) and ride the roller coasters”. He said “yes I could go but I would not be getting off the ride!” He thought I was teasing but I told him I was serious and he said.. no with your condition, you cannot do anything like that! So amusement parks are out of my picture of things to do! Sorry to hear about your son. It is harder when you are young and cannot do things!

      • #19593
         Colleen Steele 
        Keymaster

        Margie, just another of so many things that PH and heart patients have to give up. It scares me to think of those who get on roller coasters not yet aware that they have PH or a heart condition.

      • #19610
         Brittany Foster 
        Keymaster

        Margie,
        The sarcasm from your doctor sounds like the kind of interactions I have with my team too. I am so sarcastic a lot that they can never tell if I’m just saying something just to mess with them or if I’m actually serious. At least you didn’t learn the hard way about going on the rides though. Seriously, before I knew about anything going on with my heart and my health I was quite the daredevil but I slowly began to feel worse and worse doing those things.

    • #19609
       Brittany Foster 
      Keymaster

      Hi Robin,
      Wow! reading your story gives me the chills in a good way and bad way. In the good way, I am happy that your doctors were able to send you right to the hospital and that talk of PH and suspecting that early on helped you get a quick diagnosis when you were admitted and thankfully you were out of the hospital with the things you needed to stay safe.

      I also have the chills (bad chills) just thinking about you going through all of this so quickly after a hip surgery. That must have been overwhelming and scary ! What was the hip surgery done for, if you don’t mind me asking? My aunt and cousin had theirs done due to hip dysplasia that is hereditary in my family.

  • #19664
     Debra Eileen Williams 
    Participant

    The first time I realized something was definitely wrong with me I was 12. I went to an old style school with the high staircase to the front door. I was walking up the stairs with 2 friends one day when a couple of boys from our class came racing by and raced up the steps two at a time. My friends started talking about how they were just showing off and would be in so much trouble if the teacher saw them. Then one said that it wasn’t even that great as she could run up the stairs two at a time if she wanted, but she knew better. My other friend agreed and it hit me that Yes, they could run up the stairs and I couldn’t. They were walking next to me in the middle of the stairs and holding a complete conversation. I was struggling up the side of the stairs, using the handrail to help haul myself up, and the most I could say was yeah or uhh. That’s when I knew something was wrong but it took almost 40 years before I was dxd with PH. Went through everything else first- asthma, allergies, hay fever, lose weight, exercise more- you name it. Finally found a doctor who thought it might be PH. Ran through a bunch of tests to rule out everything else, scheduled the RHC, and confirmed PH at age 51.

  • #19666
     Colleen Steele 
    Keymaster

    Debra, I still can’t believe that you went 40 years before you were diagnosed with PH. You must have gone through life having experiences like the one you had when you were 12, and how frustrating that must have been! How are you doing since diagnosed? Are treatments making a difference for you?

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