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    • #25938
      Colleen Steele
      Keymaster

      What was the first symptom you experienced that you may or may not have known was caused by PH? Is there a symptom (even minor) that you look back on now and recognize that it was your first clue that something was wrong?

      As I mentioned before, when my son was a little boy he would often raise his arms and cup his hands behind his head. When I asked him why he told me it helps him breath. I know now that it was PH.

    • #25950
      Dawn
      Participant

      Hi @colleensteele. My first symptom was shortness of breath. Things that once gave me no problem became more and more difficult. Even after I was diagnosed with afib, and the doctors thought that was the issue, the breathing continued to worsen. Every single dr appt. during the three years it took to be diagnosed with ph I would tell them that the breathing was still an issue and getting worse. Finally getting to a pulmonologist who started fresh, and listened to me, led to the diagnosis.

    • #25955
      Jen Cueva
      Moderator

      Great topic, @colleensteele. My first symptom was shortness of breath along with the swelling that my boss said I was starting to look like the Michelin Man, do y’all remember him on TV?


      @dawnt
      , yes, I was SOB with talking and crawling up to my bed at night.

    • #25958
      Carol alexander
      Participant

      Would start to go up stairs half way up had to stop could not breath waited a few seconds and then started again. It was like something had to catch up.Than it was walking could not walk a distance it just got worse

    • #25969
      Jen Cueva
      Moderator

      Hi @carol-alexander, how are you doing? I have missed you!

      I can certainly understand the stopping and waiting for something to catch up. The distances still get me today and no stairs for me, thank you. Do you still have to climb stairs? If so, how is that going for you?

    • #26003
      Rayetta
      Participant

      My first symptom was shortness of breath that gradually continued to worsen. It got so bad that I was struggling to get up the stairs to go home after I got off of work. I had about 12 stairs and would have to stop 2 or 3 times just to get up them. That’s when I first starting seeking help and still wasn’t diagnosed until several months later.

    • #26006
      Joyce Sandberg
      Participant

      The first symptom I experienced was shortness of breath. Blotches on lower legs and swollen ankles.

    • #26046
      Jen Cueva
      Moderator

      Hi @rayetta-meverden-johnson, like you, my stairs were the devil! My daughter, who was 11-12 at the time, wrote later in college how she remembered me crawling up the stairs to go to bed at night. It sounds like you were diagnosed pretty quickly. A few months is excellent; some take years to find an actual diagnosis. Who do you think was most helpful in getting your diagnosis?

      Do you still have the 12 stairs? If so, how do you manage them now?

    • #26047
      Jen Cueva
      Moderator

      Hi @joyce-sandberg, thanks for sharing. Were the “blotches” on your legs from the decreased blood flow? The swelling is awful. I remember losing so much weight at first. I did not even realize that my body could hold onto all of that water. It also stretched my skin out, which still looks awful.

      Do the swelling and blotches continue to be an issue for you, or are they more manageable with PH meds?

    • #26049
      Joyce Sandberg
      Participant

      The blotches seem to be better since taking CTEPH meds, Uptravi and Adempas. Swelling is an ongoing issue. I avoid taking water pills; rather elevate feet instead.

    • #26058
      V.R. Peterson
      Participant

      My son’s first symptom was repeated bouts of pneumonia. He’d get it at least once a month. Eventually, it got so the antibiotics would never relieve the chest pain or the shortness of breath. When he asked his doctor about it, the doctor noted that he had arthritis in his spine.

      That was the point that his co-workers had an intervention and insisted he see another doctor. One of his co-workers was moonlighting at another doctor’s office, so that’s where he went. It took two years from the first bout of pneumonia until he saw that second doctor. That doctor sent him to a cardiologist, who ran some tests and sent him to a pulmonologist. The pulmonologist ran some more tests and admitted him to the hospital for a right heart cath. That was when he received his PH diagnosis and the beginning of his journey toward better health.

    • #26075
      Colleen Steele
      Keymaster

      Well it sounds like shortness of breath is the most common first symptom. That was my son’s as well. @mamabear007 I have heard of other patients who experienced bouts of pneumonia at first. Did he have a cough even when his pneumonia would clear? Cullen often had a barking cough that his doctor’s thought was croup. His PH doctor later told us that can also be a symptom of PH.

    • #26080
      V.R. Peterson
      Participant

      @colleensteele, he would never admit to a cough until it got so bad that he couldn’t hide it during his weekly visits. I suspect the answer would be yes. It ticks me off that the first doctor never noticed that his heart was larger than it should be. He noticed the arthritis in the spine, but not that the right heart was double the normal size.

    • #26088
      Jen Cueva
      Moderator

      Wow, it is interesting that most experienced shortness of breath as their first symptom. @mamabear007, having pneumonia so often would be horrible. Your poor son. I would be ticked off too that the doctor failed to notice your son’s, enlarged heart. But missing that and seeing arthritis in his spine, that would tick me off more. I am happy that y’all finally did get the diagnosis, and he was a candidate for PTE surgery. What an ordeal this must have been. I am sure that as a mom, you had to jump through a few hoops.

    • #26095
      Jimi Mcintosh
      Participant

      Sudden bouts of light-heaviness, visual distortions and sensations of fainting were the 1st signs. This was 2 days after driving straight thru from
      Dallas to Atlanta, thought it was just fatigue. Symptoms got progressively worse and shortness of breath caused me to seek medical care. Almost 2 years to get a firm diagnosis.

    • #26097
      Colleen Steele
      Keymaster

      @mamabear007 I can understand how that memory must haunt you. Did the doctor ever provide an explanation as to how he missed the enlarged heart? I have suspected that my son’s heart was enlarged for a while before it was realized. It’s unlikely that it became enlarged overnight which is what it felt like happened. It hurts knowing how long our boys struggled before diagnosis, but thank God they are both doing well now.

    • #26099
      Colleen Steele
      Keymaster

      @jimi that’s a long drive straight thru while not knowing you were battling a serious illness. Do you think the stress of it exasperated your symptoms making you more aware that something was going on with you? The two year wait for diagnosis – it’s so frustrating how common that is. My son waiting two years for answers as well. Thank God they finally properly diagnosed you.

    • #26105
      V.R. Peterson
      Participant

      @colleensteele, that first doctor never even acknowledged missing the enlarged heart. I hate that our boys were sick for so long before doctors took notice, but now I’m just grateful for their health. It truly was worth the wait.

    • #26120
      Rayetta
      Participant

      @jenc I saw that you had asked me how I am doing with stairs and who was most important in getting my diagnosis.
      First I moved from where I lived before. I live right across the street from my medical clinic and about a block away from the closest hospital. I no longer have steps to contend with and still struggle somewhat when I do find myself tackling the stairs. It isn’t as bad though. I live on the second floor of an apartment building and my apartment is really close to the elevator. I must say this was a good move for me. I am also no longer working. I am currently on disability. The person most important in getting my diagnosis would be two people. I had someone coming to my home to check on me because I deal with depression. She worked with a mental health facility here. I told her that noone was pushing for an appointment with a pulmonologist and she chose to make the call and get things moving. From there it went pretty fast. I saw the pulmonologist who is the second person that was most important in my diagnosis. I saw her and she spent over an hour with me. I left her office and then a couple of days later she called me to tell me that she talked to a cardiologist and that they would be getting a hold of me to schedule and appointment. She told me that the appointment with her was needing follow-up with a cardiologist. Later she told me that our conversation and exam bothered her and she knew something was seriously not right. (This call happened on Sunday night.) I never expected a physician to call me on the weekend. She got things rolling. The cardiologist also called me that evening. I saw him 2 days later and never got to go home that day. I was admitted to the hospital for one week. I was lucky from the sounds of it. I am glad that the pulmonologist and the case worker got things rolling for me.

    • #26140
      Bill Jones
      Participant

      My breathing issues about 5 1/2 years ago and was diagnosed with ILD. I was also having some minor bouts with my joints which was attributed to arthritis. Thinking back now I do remember having slight shortness of breath when I would be doing my daily routine, like walking and things. It was about 2 years later when I was at an appointment with my Rheumatologist and just walking in to the treatment room I my oxygen level was at 78. He sent me for a stress test, which led to having an echocardiogram and then a heart cath. This is when the PH was diagnosed. I just assumed this was all normal for someone with ILD. Over time my fibrosis has worsened and now possibly going for a double lung transplant.

    • #26141
      Brittany Foster
      Keymaster

      @bill-jones really interesting that you bring up the joint pain. I started having a lot of swelling and joint pain too. At first the doctors were working me up for a blood clot but then when they did the exercise heart cath and saw how low my oxygen levels were getting, they realized that I just wasn’t getting enough blood flow and oxygen to my extremeties and that was causing a lot of the pain I was feeling. Luckily when I got put on oxygen this started to help some ! Keep us updated with how things are going with evaluation for transplant !

    • #26152
      Bill Jones
      Participant

      Brittany, I always thought the joint pain was the outcome of wild younger years but was a combination of osteoarthritis and rheumatoid arthritis (Some of which could be attributed to the above). Once this became pronounced my diagnoses went to the PH Group 3 which is part of the autoimmune disorder or connective tissue disorder. I was involved with a study drug that was just written up in the PH News last week (Tyvaso) with its results. This just may have helped me if I could have gotten on it about 4 or 5 years ago. My problem now is my scaring in the lungs is too far gone so my oxygen requirements are greater and greater. I will keep you informed with my upcoming evaluation for the transplant.

    • #26160
      Gayle Ward
      Participant

      I experience shortness of breath when making my bed. My Cardiologist found the PAH diagnosis

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