This topic contains 26 replies, has 6 voices, and was last updated by  Jen Cueva 1 month ago.

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  • #19679
     Colleen Steele 
    Keymaster

    My son became symptomatic at 6 years old. Struggling to catch his breath and occasional chest pains where two of the symptoms but at this early stage it was a dry cough that was the biggest concern. Not only was it the worst of the symptoms but it also contributed to two years of misdiagnosis. He was frequently diagnosed with croup and later, asthma.

    It wasn’t croup and it wasn’t asthma causing the dry cough, it was PH. I’ve read that coughing is actually an uncommon symptom in PH patients, but not unheard of.

    Do you experience a cough that has been diagnosed as a symptom of your PH? Was it first misdiagnosed as something else? Share your experience with us.

  • #19693
     Jen Cueva 
    Participant

    Hi Colleen,
    I do often have a dry cough off and on through the years. I was told by my previous PH doctor that this is common in PH patients more than we think. He traveled the country to educate on PH, so he’s seen thousands of PH patients through his years. He’s also a huge researcher in PH.

    I can see how this dry cough may be misdiagnosed. But when I have this, PH cough”, it’s unlike the cough I get from bronchitis, etc.

    I also deal with a hoarse voice at times, which he also contributed to my PH. Did you son deal with the hoarseness too or just the cough?

    • #19702
       Colleen Steele 
      Keymaster

      Jen, it was mostly the cough. Because he was young it was assumed it was croup. I have horrible memories of holding him in the middle of the night on our porch hoping fresh air would help, or steam from the shower. Nothing every helped. Then they started him on inhalers for asthma and the inhalers actually made him feel worse. It was such a nightmare.

      • #19707
         Jen Cueva 
        Participant

        I certainly can understand why at his age they thought it was croup. I hate that he suffered from those dry cough spells as such a young kid. I’ve cracked ribs coughing.

        As you mention, before my PH diagnosis, I was prescribed inhalers to help. I used them a few times and they made things worse for me. For me, the inhalers caused an increase in lightheadedness, palpitations, and tachycardia (rapid heart rate). The inhalers also caused an increase in cough and dry mouth. Of course, they were thinking I had something more like asthma, but they were wrong.

  • #19744
     Brittany Foster 
    Keymaster

    I get a cough but I’m not sure if it is related to my PH or not. I feel like a chronic cough can be so difficult for the doctors to diagnose. For me, it is a combination of having to catch my breath because of restrictive lungs, having obstruction going on, and just inflammation from not being able to expel a hard cough and get out the mucus well enough. It always sounds like that “barking cough” but usually the lung sounds are okay and wouldn’t put up any red flags for pneumonia. It is hard to treat coughs though, especially when the underlying cause is unknown. It’s easy to treat the symptom and just mask it with cough meds, steroids, inhalers, etc.

    • #19783
       Colleen Steele 
      Keymaster

      So true Brittany. Honestly, we never blamed the doctors for thinking croup. I remember researching it and thinking, yup, sounds like croup to me. However, when it wouldn’t go away and a lot of time passed that’s when we said, “This is NOT croup.” Then of course it switched to asthma. That made some sense to me too because my asthma is a cough. Then things got worse and you know the rest. That barking cough that you have sounds like my son’s cough. I think it’s the body’s way of trying to kick start the lungs. That’s my medical opinion. LOL.

      • #19792
         Brittany Foster 
        Keymaster

        LOL I trust your “medical opinion” Colleen. I think that it probably is something to do with the body’s response to just the stress that the lungs are under which is why people cough involuntarily when they overwork themselves or people cough after running for awhile . I know when I played ice hockey so many of the girls would be coughing during the drills and didn’t necessarily have a lung condition or asthma! So you can imagine the stress that our bodies were under at the time. No wonder why we are always coughing

      • #19923
         Jen Cueva 
        Participant

        Lol, @colleensteele, I love it! ”my medical opinion”. I’m with Brittany, your ” medical opinion” makes sense.

  • #19749
     Janet Barry 
    Participant

    Jen, I too have horseness especially if I haven’t been talking. Does anyone have a problem with your voice fading
    out while speaking. I read at my church services and this can cause a great deal of trouble.

    • This reply was modified 1 month, 1 week ago by  Janet Barry.
    • #19751
       Brittany Foster 
      Keymaster

      Janet,
      My voice definitely does crack and fade and is more raspy the more I talk without my oxygen on. before the surgery I had that relieved some compression off the esophagus it was a lot worse with the raspy voice . Sometimes some of my doctors would say that this can also be due to acid reflux. Have you ever been tested for reflux or told that you have GERD?

    • #19785
       Colleen Steele 
      Keymaster

      Janet, Brittany makes a good point about being tested for reflux. Sometimes the symptoms of reflux are not obvious and you might have it without realizing it. But, supplemental oxygen can dry the passages out and cause the raspy voice as well.

  • #19755
     V.R. Peterson 
    Participant

    Before my son had his surgery, he was coughing constantly, but it was more of a wet chest cough that sounded like pneumonia. Now that the surgery has greatly reduced his PH pressures, he still occasionally gets a cough from a cold. I have to admit that every time I hear him cough, I panic a bit.

    • #19760
       Brittany Foster 
      Keymaster

      @mamabear007 I know that it must be difficult as a parents to watch your child go through so much. Every time I start with a cold my mom makes sure that I am watching my oxygen levels and blood pressure and making notes of how I feel through the day. Usually I will give it a 2 day rule. If it is not better in 2 day or I start to experience more symptoms, I will go to the doctors to get medicine to help treat it and make the cough better. Sometimes I get the wet coughing sounds, especially if I am having a hard time with trapped mucus and not being able to get it all out.

      • #19773
         V.R. Peterson 
        Participant

        @brittany-foster, yes, it is difficult to watch my son go through this. However, it would be much harder if he started trying to “protect” me by keeping me out of the loop. He’s finally figured out that a mother can tell, and it does no good to try and hide how he’s feeling. 🙂

    • #19787
       Colleen Steele 
      Keymaster

      @mamabear007 as mom’s we really related to what each other has and is going through, don’t we? When my son coughs I stop what I’m doing and look at him. His response is usually, “OMG relax, it was just a fur ball.” LOL.

      • #19797
         V.R. Peterson 
        Participant

        Oh @colleensteele, I love your son’s sense of humor!

        I honestly think if my son were to find out he is 100% cured, I would still worry. It’s part of the mother’s DNA.

  • #19759
     Ally 
    Participant

    I have a dry cough my doctor just said it was all apart of it. My voice has changed and my doc said that’s from high pressure on the pulmonary arteries too you can actually permanently lose your voice if the pressure damages the vocal chords.

    • #19763
       Brittany Foster 
      Keymaster

      Wow Ally,
      So interesting that your doctor made that connection to PH. That would definitely make sense for the symptoms you are telling us about, especially if you are having damage to your vocal cords from this. Is there any way to treat this or help make the voice better? Do cough drops help at all or something to soothe the feeling of irritation with coughing?

  • #19766
     Ally 
    Participant

    Yes I usually will drink something with carbonation and suck on a peppermint. I also get choked a lot just regularly eating food they also said it can damage your esophagus also the pressure. It’s like it doesn’t close like it should and I suck food into my lungs. I never had the problem before.

    • #19769
       Brittany Foster 
      Keymaster

      Ally,
      I just recently had a surgery to repair my aorta and part of my pulmonary artery that was compressing my trachea causing my breathing problems and coughing and also causing the aspiration (food going back up and into the lungs). This was a HUGE problem for me. I had reflux chest pain almost constantly until I finally go a surgery for it. Have your doctors checked imaging to make sure that your esophagus and airways aren’t being compressed? Besides basic CT scans and MRI, before my surgery I also had a barium swallow study where they could visualize the area of narrowing in my esophagus that would give me that choking feeling.

    • #19788
       Colleen Steele 
      Keymaster

      Ally, that is really interesting information and it makes sense. Just a little advice, the peppermint in moderation is ok but take care not to have too many in a day. Peppermint is my absolute favorite flavor and I am addicted to Starbuck’s Peppermint mocha’s, but I have issues with reflux. According to my doctor peppermint is one of the worse things for reflux, that and chocolate…(Um, peppermint mocha’s). I’m sure you don’t go as crazy as I do with the peppermint but since you have problems to begin with I thought I would mention it.

  • #19767
     Ally 
    Participant

    Just keeping lung pressure down helps and apparently mine gets very high at times for no reason. At my last heart cath one of my pressure was 90 mmg. It really concerned my doctor and he said my Aorta was distended

  • #19774
     Ally 
    Participant

    Thanks Brittany because it is getting a lot worse I even choke on wAter

    • #19781
       Brittany Foster 
      Keymaster

      Ally,
      That’s scary for sure ! I was also unable to swalow soft foods, even ice cream which I missed MORE THAN ANYTHING ! lol! The surgery definitely helped me out though and cleared up the airways and trachea. Be sure to ask your doc !

  • #19809
     Ally 
    Participant

    Thanks Brittany I will for sure and ice cream is s challenge it like gives me a brain freeze after one bite.

  • #19894
     Janet Barry 
    Participant

    Thanks Brittany & Colleen.
    I am taking care of gerd, but I think my problem is more than just that. I still need to speak with my pulmonologist. The gerd was dx by my ENT.
    We’ll see.
    God bless all on this site.

    • This reply was modified 1 month, 1 week ago by  Janet Barry.
    • #19897
       Brittany Foster 
      Keymaster

      Janet,
      Please make sure they work to get to the bottom of what might be CAUSING your GERD. Often reflux is just a symptom of a bigger problem. For me, it was a vascular ring which is an abnormality in the way my aorta was positioned that I had since birth. Over the years it caused so much scarring to the point where my esophagus started completely closing off and I wasn’t able to hold any food down by mouth without vomiting it up. Do you ever regurgitate what you eat? This anomaly of my aorta was also compressing my trachea leading to cough, breathing difficulty, and hoarseness of the voice . What I’m basically saying is make sure they check into the underlying cause and advocate for testing like a barium swallow study or upper GI study so they can take a closer look at the mechanism behind why you are having reflux and maybe they can pinpoint further what is going on.

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