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    • #27240
      Jen Cueva
      Keymaster

      Because pulmonary, cardiology, and cardio-pulmonary doctors all can be considered PH specialists. At times we may be diagnosed with one but now are under the care of another.

      Often times, some of us are diagnosed while in the hospital for other issues. I was diagnosed with PH by a heart failure doctor back in 2005. He did not become my PH specialist because I moved. I then had a pulmonary, PH specialist for about 10 years. Now, my PH specialist is a heart failure doctor, again.

      Who diagnosed you with PH? Who do you currently see for PH? Let’s talk about this.

    • #27243
      Denise K Thompson
      Participant

      Good question. I was diagnosed one year after a pulmonologist said I had asthma. Went for an echo & had elevated pulmonary pressure so same pulmonologist dianosed me with ph. Now after repeated echo & even higher presure, my lung doc wants a second opinion & I’m being sent to a clinic in Portland that specializes in ph. Confusion seems to be that diagnosyic pressure norms have raised, so what was considered high before, now is not. Based on that, doc is confused about why my o2 sats continue to fall, so now, so am I.

    • #27244
      Colleen Steele
      Keymaster

      @dinky1952 so many, including my son, get diagnosed with asthma before PH. Sometimes patients do have both but many times it’s not asthma at all. My son didn’t have asthma and the inhalers made his symptoms worse, especially the heart palpitations and chest pain.

      I am praying for you that the confusion with your pressure and o2 ends once you see the specialist in Portland. Do you have a scheduled appointment for that yet? A specialist is really the best way to go. Please keep us updated on how things are going for you.

    • #27245
      Colleen Steele
      Keymaster

      @jenc when my son started experiencing palpitations and shortness of breath his pediatrician sent him to a cardiologist. He was diagnosed with Long QT syndrome and placed on a channel blocker. Symptoms worsened, especially his breathing, which led to a misdiagnosis of asthma. Two years later symptoms kept worsening. It was his wonderful pediatrician who called the cardiologist and suggested, “I know this might be hard to believe since he’s only 8, but I’m starting to wonder if we are dealing with PH.” He went in for another echo and I’ll never forget the doctor looking at the results. He told us he needed to go do some calculations, and rushed out of the room. Next thing we knew he was scheduled for a heart cath and the rest is history.

    • #27249
      Denise K Thompson
      Participant

      Thanks Colleen Steele. I just got referred to Portland Clinic on Thurs, & am to wait til they call me. Yeah, ends up I don’t have asthma, but may have had an allergy reaction with a little wheezing at the time I was diagnosed. I stopped albuteral a long time ago, because I never wheezed, just extreme shortness of breath. I’m still on the steroid inhaler & doc wants me to stay on it. I just wanna breath normally enough to get from point a to b, especially when it’s only 20 ft.

    • #27254
      Rebecca Talkie
      Participant

      I too was diagnosed with asthma years ago. I never wheezed, only SOB and chest tightness. Asthma meds seemed to work but I hated the steroid inhalers. When I had my weight loss surgery, and lost 90+ lbs, I felt better and stopped the steroids but kept up with my one other inhaler. My pulmonologist,and friend, died of a brain tumor and my PCP told me to find a new one. So I took the advise of a nurse friend of mine and went to one at the hospital connected with University of Cincinnati. He asked if I had ever had a CT scan of my chest. When I said I didn’t remember ever having one, he ordered it. Found an enlarged pulmonary artery and the reading said PH. He wasn’t really buying it at first, but when I told him I had passed out and fallen, he relented and sent me to the PH clinic at University of Cincinnati. They ordered a battery of tests including pulmonary function test, some sort of test with gas, and an ECHO. The decision was then made to have a right heart cath. While doing it, they gave me a certain med that proved that I have vasoreactive pulmonary hypertension. Since then I have passed out twice. Once it was only briefly and I caught myself before I fell. That earned me a month long heart monitor to look for arrythmias. But this last time a few weeks ago, I was on a stone path in our garden and I went down hard on the rock path. I have no clue how long I was out but I managed to get bitten by ants or chiggers all over my back and sides and breasts. It was awful!!! When I woke, I called for my husband who was right there but did not realize I had fallen. ( MEN!) Now I am going to have another Echo next week and another right heart cath. I asked them if they would do both sides but he said no because I haven’t had any chest pain. I have been a cardiac nurse long enough to know that women don’t have the same symptoms as men!!!! We’ll see if they have to change my meds.

    • #27259
      Jen Cueva
      Keymaster

      Hi @dinky1952, I was told that it was most likely asthma at first by a local pulmonary doctor. H only gave me inhalers, which made my racing heart even faster and did not help my SOB at all. It was not until a simple walk in his office that he sat me down and was confused that my [email protected] levels dropped significant. Not long after, I ended up in the ER from almost fainting. Thankfully, my hubby caught me.

      I hope that you will get some answers and clear up some confusion once you see the PH team at Portland. I know this can be frustrating when you want to feel some better and get answers. Prayers that this appointment will be soon. Please keep us posted.

    • #27261
      Jen Cueva
      Keymaster

      Hi @colleensteele, I am so happy that Cullen was seen by an amazing Pediatrician that knew the signs of PH. Back that and at that young age, that was not as known. I know that you and your family are grateful for this pediatrician. It was not an easy diagnosis, but glad that it was quick and he did not have to continue to get worse before anyone noticed.

      It must have been scary as a mom when he ran out of the room? Were you more surprised or heartbroken and frightened? I think that I would have had a bit of a roller coaster of emotions hearing that.

    • #27262
      Jen Cueva
      Keymaster

      Thanks for sharing @becca. Like you, I would want both sides done while they are doing the RHC already. So true, women and men do have different symptoms.

      Do you feel like the weight loss surgery and losing 90 pounds helped? I know many who are overweight that their team tells them first to try to lose weight. I know it is not going to take PH away but wonder if some of the symptoms would improve. A PHriend of mone had weight loss surgery a few years ago and said she noticed no difference after losing weight. I think she gained most of it back by now, so IDK.

      I hate that you are passing out and falling again. We need to bubble wrap you! Can you stay out of the garden until after your Echo and RHC? Please keep us posted and, until then, stay inside and safe.

    • #27263
      Rebecca Talkie
      Participant

      I had my weight loss surgery before I had or knew I had pulmonary hypertension. Obviously, I felt better being 90+ pounds less. I originally lost more but I gain and lose 35+ pounds of that which I was told was normal. This COVID quarantine has not done me any good at all. Actually, I sometimes feel that Doctors have been missing this diagnosis for years. But Vasoreactive PH is not as bad as some other types of PH, so easy to do I guess. There are times I feel like I need bubble wrap too. I will let you all know the results of all these tests next week.

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