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    • #21253
      Colleen Steele
      Keymaster

      “Pulmonary blood pressure is normally a lot lower than systemic blood pressure. Normal pulmonary artery pressure is 8-20 mm Hg at rest. If the pressure in the pulmonary artery is greater than 25 mm Hg at rest or 30 mmHg during physical activity, it is abnormally high and is called pulmonary hypertension.”

      How high has your pulmonary pressure gone and what has it’s best number been? What treatment helped improve your numbers? Do you find that your pressure is higher with sedation and during a cath then it is with an echo?

    • #21320
      Brittany Foster
      Keymaster

      I never really had a problem with my pressures being too high, I think it was just the fact that they really fluctuated so quickly on exercise testing where they measured the pressures directly. This was the most accurate testing that I had. Kevin, I am glad that the treatments seem to be helping for you. It seems like you are on a high dose based off those numbers, is that correct?

      • #21336
        Colleen Steele
        Keymaster

        My son’s pressure was so high when he was diagnosed that I don’t think his doctor thought he would survive much longer. Luckily we were referred to a specialist and he responded quickly to triple therapy treatment. His pressures skyrocketed again at the time that we were listing him for transplant.

        • #21341
          Brittany Foster
          Keymaster

          Colleen,
          That must have been so scary for you! I can only imagine. I am glad that they were able to get the transplant done in time and I’m sure you are thankful for that every single day.

    • #26640
      Marsha Ashurst
      Participant

      Pulmonary pressure was 69 when I was admitted to hospital. This PH diagnosis was made 7 weeks ago and I’m just now seeing a cardiologist and pulmonologist. I don’t know what my lowest pressures have been. The right side of my heart was dilated due to high pressure.

    • #26658
      Jen Cueva
      Moderator

      Hi @jane42, I am hopeful that your team will be aggressive and treat you to help some. Often, even if the pressures do not drop significantly, the symptom relief is what we notice first. Have you noticed any changes since your diagnosis was less than 2 months away?

    • #27121
      Libby
      Participant

      My pressures at time of diagnosis in 2017 were in mid to high 30s. They have not done another heart cath to check them since, instead they’ve been checking in with how I feel and doing MRI, echo and exercise tests.

    • #27143
      Jen Cueva
      Moderator

      Thanks for sharing @libby. I have noticed that depending on the PH doctor; some will monitor by echo and symptoms. I have had the least cardiac MRIs compared to the others. It is once when the doctor goes more about how you are feeling and other parameters.

      Do you do the other test a few times per year?

    • #27149
      ronald cole
      Participant

      Hi Ron Cole. My initial pressure was 108 and 2 months later they checked one more and it was 89. That was 10 months ago.
      I have been going downhill My Doctor is going to give me another total work up in 2 weeks I do not expect any imp-improvement this time.

    • #27157
      Carol Volckmann
      Participant

      After I was diagnosed I had a right heart cath and like you Ron, my pressures were over 100. My Pulmonologist wanted to get very aggresive with my PAH and put me on Remodulin sub-Q, Letairis and Adcirca. My pressures came down to a little over 50. Ron I am so sorry you feel like you are going down hill. When are you checking back in with your team? I hope they can come up with a combination that will help you and get your pressures down. Sending you positive energy.

    • #27159
      Jen Cueva
      Moderator

      Oh no, @texas2018, I am sorry to hear about your progression. But I am happy that your doctor is monitoring you closely. What treatments are you on again, Ron? Is your PH team thinking of adding anything?

      I am sending positive thoughts and prayers your way from Texas. Thanks for stopping in. It is great to “see” you. Take care of yourself and keep us posted.

    • #27162
      Colleen Steele
      Keymaster

      @texas2018 we haven’t heard from you in a while and I’ve been wondering how you are doing. I’m so very sorry to hear about your decline. Has your doctor mentioned any treatment options he might try after your visit in a few weeks? You are in my thoughts. Update us when you can. It’s always nice to hear from you.

    • #27173
      Dawn
      Participant

      My pressure when I was diagnosed with ph was 28/29. Since the medication has kicked in I’m usually around 26/27. Compared to the numbers I’m seeing in these replies I feel like I may not have much ‘right’ to offer the support I try to here. Such a difference between what I’ve dealt with compared to others. I’ve certainly felt/feel the effects of my ph, and it has certainly affected my physical capabilities, and in combination with my other medical issues could be having effects that don’t match the pressure level. I hope that any support I can offer won’t be dismissed because I’ve not had to battle the same level of this disease (yet) as others.

    • #27174
      Carol Volckmann
      Participant

      Hi Dawn, your support is well felt. We are all struggling with our battles and we all need each other’s support – that is what makes this forum so special. Thank you always for reaching out to share and your warm support!

    • #27180
      Jen Cueva
      Moderator

      Hi @dawnt, please do not feel like your posts and support to all of us is not important. You are such an important member here sharing such valuable information.

      I am in the 30s, but still have crazy symptoms. My older PH doc for 10 years or more, said some people with lower pressures could have more symptoms. As you mention, it depends on so many other factors, like other coexisting illnesses, etc. My pressures have never been sky high like some., But I know many PHriends who have pressures between high 20s-100.

      Your seeing support is felt and appreciated by us all. We are all PHighters, and it is not easy to deal with PH daily. This is just one number, nit the whole picture of you. Either way, you have PH, and you belong here with us, sorry you are stuck with us, hehe.

      Thanks, @cdvol3gmail-com, for reassuring Dawn and being supportive as always. I am sending hugs from Texas to you both.

    • #27185
      Pat Gable
      Participant

      My pressure was 42 the first time, then decreased to 38, but my most recent echo was 50. I was not able to use my C-Pap machine because of an allergic reaction so the doctor thought that was the problem. Now I’m back using it every night and hope my numbers are down. I have two heart valve leaks designated as “severe”, and my pulmonologist says, because I am so healthy otherwise, no doctor would consider surgery, so I have to use the C-Pap every night and hope for the best. The only symptom I have is heart palpitations, and they have become relatively infrequent.

    • #27186
      Greg Wooten
      Participant

      I was diagnosed in June during a heart cath. The doctor didn’t know at the time but I had three blocked arteries. 80% 70% and 100%. He put in two stents. One artery was too small for a stent and they didn’t want to take the risk. My Pulmonary Pressure was 28. I was diagnosed with PAH due to left side diastolic heart failure. I have severe chronic asthma that I have had for 30 years. I also have Hypogammaglobulinemia. I had to have surgery in July of 2019 and while in the hospital had a Pulmonary Embolism. The way my Pulmonary Doctor puts it, I have very complex health issues. In July of 2020, I had an epidural hematoma.

      The PAH and Heart Failure are new for me and very frustrating. I’ve been able to deal with my Asthma and multiple bouts of pneumonia for years but this feels out of my control. I felt really bad this week, almost to the point of going to the ER. My cardiologist, who I really like and has been a tremendous help, didn’t offer much advice. Maybe this or maybe that. Never a clear answer. It’s almost like if your BP and Heart Rate is in range, that’s about the best you can hope for.

      Has anybody else dealt with this?

    • #27187
      Denise K Thompson
      Participant

      My initial was 29 when diagnosed. As of past month, it was 37.5. My understanding that based in my pressure alone, it wouldn’t have prompted my diagnosis. It was my profound sob that lands me in a progressive & certain diagnosis of ph. Low o2 sats as well.
      Thanks for the question, it helps me.

    • #27188
      Gayle Ward
      Participant

      My pressure was 95 when I was diagnosed. I was started on Opsumit and adcirca which has worked very well. My pressure is still high in the 30s. I walk every day and watch my salt intake. I’ve been stable and have a pretty good quality of life.

    • #27190
      Colleen Steele
      Keymaster

      @greg I am so sorry that you have been struggling so much. In addition to a cardiologist, are you also seeing a PH specialist. A PH specialist will also focus on your heart failure and should work hand-in-hand with the cardiologist. My son also had heart failure and I know a number of other members here struggle with it as well. Has your doctor discussed milrinone at all? Here is a link to a topic about it that I introduced a while ago.

      Heart Failure And IV Milrinone

    • #27192
      Dawn
      Participant

      Thanks Carol & Jen for the kind responses. I’ve gotten so much help and insight from this site, and the forum members. Hugs to both of you, and anyone else who feels like they could use a hug!

    • #27201
      Jen Cueva
      Moderator

      Hi @patriciagable, so now you’re using the C-PAP every night. Are you not having any allergic reactions to it now? Or, are you saying that the doctor thought you might be allergic, but you are not?

      Are you on any treatments for PH at all? Is your PH caused by sleep apnea or leaking valves? I hope that the B-Pap is helping with some relief. I am happy to hear that your palpitations are not often.

    • #27211
      Dawn
      Participant

      @patriciagable, when I first started my cpap I had the under the nose very minimal mask. It worked great, not overwhelming at all. I went through a period a few years ago with terrible allergic reactions. I would sneeze & cough to the point of being nauseous. I was literally going through an entire box of kleenex every day at work, and about the same at home. What I finally figured out was that I’d recently gotten a new cpap mask. Same style as the other I’d been using, same mfg, but apparently the mfg had made a change in the materials used in the mask. I went back to using one of my older masks, no problem, tried the new one again and was right back to the sneezing/coughing, constant blowing my nose.

      I ended up going to a full face mask because I have a tendency of sleeping with my mouth open when I’m in deep sleep. Now that I’m used to the cpap, though, I don’t mind it at all. It’s the ‘easiest’ I breathe all day, and I feel like it gives me reassurance that I’ll be ok with my breathing & apnea overnight. Kind of a security blanket!

    • #21313
      Colleen Steele
      Keymaster

      Kevin,
      Thanks for sharing your echo results. It sounds like treatment is helping. Besides the pressures going down have you felt any improvement?

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