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    • #12274
      Terry D. Blissett
      Participant

      I was told by my cardiology nurse that I have a “mildly elevated pressure in the pulmonary artery”. Can somebody please elaborate on what exactly does that mean?

    • #12275
      VK
      Participant

      Hi Terry,

      Taken literally that would mean mild pulmonary hypertension (pulmonary arterial pressure is the chief measure of severity). However, your medical team has more explaining to do and if I were you, I would call back and ask them what the finding means to you as a patient and if there is anything you can do, because mild PHTN via artery pressure can mean different things in different people.

    • #12276
      Terry D. Blissett
      Participant

      Ok. What does PHTN stand for?

      • #12279
        Brittany Foster
        Keymaster

        PHTN would be an abbreviation for Pulmonary Hypertension. Some say PH too. And I would refer to VK’s comment and agree with what was said. I would definitely ask your doctor. For some people even high pressures don’t have as great of an effect on them. It depends on the body, other things that may be going on that are adding to symptoms and how sensitive you are to these elevations. Also, for me a factor is where my pressures are at rest vs when I am exercising. It takes a leap of about 10x my resting pressure.

    • #12287
      Terry D. Blissett
      Participant

      How are pressures measured during exercise?

    • #12288
      VK
      Participant

      Terry – You have piqued my interest on the subject, so I did some research.

      The best way to measure your pulmonary artery pressure (PAP) is via right-heart catheterization (“cath”), which isn’t too pleasant because it involves invasively sticking the equivalent of a long hose into an artery in your groin, where it then goes towards your heart. I haven’t had one since I was 6 months old so I can’t speak for how fun it is or isn’t, but I imagine that doing an exercise/stress test with one in you is even less fun.

      There are other ways to estimate PAP during exercise, though. According to this study: https://onlinelibrary.wiley.com/doi/full/10.1002/clc.22009 — Doctors have used multiple sensors together in conjunction to monitor various gas measures (like SpO2 via a finger clip, combined with a mobile EKG, combined with a few other sensors). They believe that it’s a good substitute for real pressure measurement.

      • #12309
        Brittany Foster
        Keymaster

        Thank you for the explanation VK. That’s exactky what it is. The pressure measurement is taken during a right heart cath. Like @beverly-repouille response below, mine was through the neck as well. It hurt a lot and with the exercise portion of the test they needed me functioning ao i was unable to reveive medication, just numbing at the site. It was very painful as it was going into the artery because mine get very narrowed at certain points. They had to do the exercise part of the test on a bike at the end of the table and i had to stay laying down. Wasnt as accurate as it would have been with standing, but they were still able to info.

      • #12371
        Judie
        Participant

        Hi Terry
        I just had the right heart catheterization last week and it was in no way as bad as I visualized. I was sedated when the doctor used lidocaine on my groin area and then inserted the cath which I felt some pressure but really it was not that bad. I was extremely worried because I also have systemic mast cell disease which makes any procedure a risk for me.
        I have learned to pre and post medicate myself until day 5 after a procedure and I did well. The cath also allowed my cardiologist to test my response to nitric oxide which was positive and now will help in figuring out how to medically treat this. Now I await until July 2 to see the pulmonologist.
        Judie

    • #12295
      Beverly Repouille
      Participant

      I had a right heart cath and they used my neck instead of my groin. I got just enough medication ahead of time that I didn’t care too much what was going on and didn’t really feel a thing!

    • #12370
      Judie
      Participant

      I am new here and I am diagnosed with mild arterial Hypertension. I have already had a right heart cath to finalize the diagnosis. I am also a nurse.
      You need more information. If your echocardiagram is what they are referring to you need in my opinion to see a cardiologist. It is very important for the best outcome to get an early diagnosis. I feel very lucky that mine was caught early mainly because I exercise most days and had a dramatic decrease in my exercise tolerance. I used to walk 4.5 miles per hour and I am now down to 3.0 sometimes even less. Please be proactive for yourself. Get a copy of all tests you have done. I can pin it down to the day that things changed in early April. I have been having shortness of breath at times but I just blew it off on getting older (I turn 60 next month). I purchased a pulse oximeter monitor and I have been checking my oxygen levels when I feel short of breath. Mostly it stays at 98% but it has dropped down to 93%.
      Once again you must advocate for your self leaving things in someone else’s hands is not in your best interest.
      Judie

    • #12377
      Terry D. Blissett
      Participant

      Thanks for all of the responses guys! I love this forum! I just found out yesterday that my PAP from my heart cath was 25, meaning NO PULMONARY HYPERTENSION! I am so excited about that news! However, my pulmonologist did still diagnose me with “episodic” pulmonary hypertension and referred me to a pulmonary hypertension specialist! 😳🤔 Does anyone have episodic pulmonary hypertension? And if so, what is it? And how is it treated? Help!!

      • #12382
        Kathleen Sheffer
        Participant

        Terry, I’m so glad your diagnosis is less serious than it could have been. I don’t know what episodic pulmonary hypertension is, nor can I find much research on it. Please let us know what you find out!

      • #12383
        Brittany Foster
        Keymaster

        Hi Terry,
        I’m not sure about the specifics of episodic PH, but I do have something called “activity induced PH” . This means that my PA pressures increase above 35 with just minimal exertion. My arteries and vessels get narrowed due to hypoxia (low oxygen levels) with movement which is why I am also on oxygen. Are your symptoms with activity or at rest? Or both?

    • #12387
      Terry D. Blissett
      Participant

      My symptoms are various. I get symptoms (fatigue that doesn’t improve with normal rest, SOB, dizziness, feeling faint) after exercise. Also, during activity that requires bending/twisting. I’m fine doing spinning classes and push mowing the lawn, likely because I don’t bend or twist. But afterwards, the symptoms come.

      • #12390
        Brittany Foster
        Keymaster

        Terry,
        I am sorry you are experiencing all of that. I can understand how you feel with these symptoms because these are the exact same symptoms that I experience. The fatigue is so hard for me to manage and I get tired way more easily doing such simple things as throwing a ball around with the kids I babysit. It is as if each year has been getting a bit harder unfortunately. I used to faint quite often and they put me on a medication to help keep my vessels open which helped a little with that and it keeps me from having changes in blood pressure with standing. When I bend at the waist I can barely breathe. Doing a stationary bike is okay for me too. It is the second I get up and move around that my vessels and arteries tighten up to the point of getting hypertension in the lungs. All of this was found on an exercise heart cath . The proper name for it is called a Level 4 CPET. may be worth asking your doctors if they do that there!

    • #12394
      Terry D. Blissett
      Participant

      Thanks for that info. I have a consult with specialist in a few weeks. I’m pretty sure that will be one of the tests she recommends. Prayerfully if there are pulmonary artery pressures, they will be low or very mild. I will continue to exercise and fight this condition in every way possible and build more stamina. I refuse to accept this condition as a death sentence.

      • #12407
        Brittany Foster
        Keymaster

        Terry,
        I love your attitude. If we do the right things for our body and try to better ourselves each day, wonderful things happen. Stay positive and never lose that energy and desire to keep fighting ! That is how healing happens

    • #12418
      KRISTINE
      Participant

      based on my right heart cath. I also have a dx. of activity induced pah. Then the belief was my copd was more the leader of the isssues i have, i tried going off letaris for a week and breathing got severe again like it was when i first got diagnosed.

      • #12427
        Brittany Foster
        Keymaster

        Kristine,
        that is interesting that yours is exercise induced as well. Mine is too and we both have the smaller vasculature that limits the intake of blood. I always find it interesting when others have similar situations as mine. It is almost comforting to know there are others out there like me.

    • #12716
      Erin McDermott
      Participant

      This is interesting! I was diagnosed, now un-diagnosed because an echo showed the pulmonary pressure dropped 3%. Although it was on the cusp of them caring to begin with initially, I am curious if I should push back.. the first echo showed my pulmonary pressure was 38 resting. I know that isn’t extreme, but from what I’ve read, it is above what it should be & I’m very symptomatic. I am having a right heart catheterization on the 27th which will give us an exact measurement, but if it’s still in the 30’s my cardiologist doesn’t think it’s the cause of my symptoms. He also doesn’t think the hole on my heart is the cause. Since January I’ve been retaining fluid in my face, neck and abdomen, short of breath easily, resting heart rate of 130’s, extreme fatigue, short term memory loss, speech troubles, and all symptoms have become worse in the last month. If he turns me away after the procedure I don’t know what to do!!

      • #12732
        Brittany Foster
        Keymaster

        Hi Erin,
        I can unerstand how you are feeling firsthand. I am always nervous that if doctors don’t find something than they will turn me away. If you are seeing good specialists right now, I would try not to stress out too much. My PH team sees me and they have referred me to other specialists such as a sleep medicine doctor, neurologist, general pulmonary etc. Sometimes PH is secondary to something that is actually the cause of symptoms. My PH pressures are low (30s) but I am extremely symptomatic and have all the symptoms of PH but it is actually caused by the underlying condition of hypoxia (low blood oxygen levels) because of a condition I was born with called central hypo ventilation syndrome and restrictive lung disease from muscle weakness. As you can see, the diagnosis is a mouthful. But it took me going to a PH specialist because of these elevated pressures to be able to get to the bottom of the root cause of what is going on. I’m confident they will help you the same way ! I know it is nerve wracking to think that they will just ditch you and tell you “good luck” but usually this isn’t the case!

    • #12717
      Terry D. Blissett
      Participant

      Erin I went to a cardiologist last week who received the same data as my nurse and he said that I DO NOY have pulmonary hypertension. Either the nurse was in error or the cardiologist is. Regardless, because of continued symptoms, my pulmonologist referred me to a PH specialist. She ordered a VQ scan which will determine if I have CTEPH. If this checks out normal I’m not sure what I will do either. The symptoms are there. But as long as I exercise (without overdoing it) my stamina seems to improve and the symptoms (though still there) are not as intense. Hope your cath goes well. (Oh my cath pressue reading was 25 and my echo was 36).

      • #12731
        Brittany Foster
        Keymaster

        Hi Terry,
        please keep us updated. Managing these symptoms and not having a clear explanation is so frustrating ! I would suggest making sure they walk you around with a pulse ox especially if you are symptomatic on exertion. That is how they found my drops in oxygen levels. Considering at first, my symptoms were only present with activity. Then they did an exercise heart cath to see pressure changes with exercise. Maybe asking them about a cardio pulmonary exercise test too? Not sure if you already had one of these. It is less invasive than a cath and sometimes they can do an echo study right after exercise to get a general sense of your pressures. All the best! Keep us in the loop and keep advocating for yourself ! Don’t be afraid to suggest testing to them.

    • #12746
      Terry D. Blissett
      Participant

      Thanks Brittany. I have already let my specialist know that I want the exercise heart cath. I love to do spin classes so I definitely want to be sure that I am healthy to do these classes without restraint. Thank you so much for your correspondence. I have a couple of tests on Monday. Will find out more info then. Will keep you posted.

      • #12751
        Brittany Foster
        Keymaster

        Terry,
        This is great that you are already a good advocate for you health and staying on top of the testing. It helps when you have knowledge about the procedures and I’m glad this group has been some help to you as you try to navigate everything ! There is always support for you here 🙂

    • #12754
      KRISTINE
      Participant

      Hi,
      So this post is long, sorry, part of it is when I get here talking to people who get it causes me to become winded.
      This topic is very interesting, it seems like we could all have the same Dr. (lol) O.k. so I am basically being put on the back burner with my dr. I have no insurance and all this testing and appts. has reached almost 20,000.00 Unbeknownst to me there is a program in the state I live in for people who work, but can’t afford insurance. It only goes back 90 days to retro pay which is no help to me at this point. I digressed the point I really want to discuss is I just saw my specialist 1 1/2 wks. ago., many moons ago I read where he started some special lung clinic in a foreign country. However I can’t find that reference now. (hate it when that happens) So anyhow, when he came to the waiting room to get me and take me to the “exam” room and upon shaking my hand and asking how I am, I replied how I reply to anyone who asks how I am. O.K. (yes Dr’s get their patients and take them to the room and their is no more waiting with this specialist.) I proceeded to tell him about an issue where I got a mosquito bite that I scratched, led to infection that didn’t clear up till 2 diff. antibiotics total round of 3-10 day runs, and 2 shots. His reply was “so wear long pants. If mosquitoes were biting my legs I would wear long pants.” As I proceeded to tell him of some other issues he said “well you just said you were o.k.” I then stated that o.k. is a generic response I give to everyone. He also dismissed the fact that I have had these “spells” where I can’t get no air in or out. Moral of the story heed my advice, of all the people you say o.k. to when they ask how you are, cuz noone really wants to know. Never tell your dr. o.k.
      It’s been 1 yr. 10 mos. that this has been going on, but I didn’t get to the pulmonary specialist till about 4-6 mos. into it. I am so confused. The confusion comes into play in my dx. I’m not sure what my diagnosis is. I don’t think they do either. Several yrs. ago I went to the allergy specialist got poked on the back to trigger the things I am allergic to, at the same time I saw a pulmonolagist who diagnosed me with asthma. (dr.has since passed away). Currently the fill in nurse practitioners who saw me for leg infection at my reg. clinic referred me to a vein specialist. I haven’t gone yet and I am going to find out what that is supposed to accomplish. I had a ultrasound to make sure no blood clot in my lower leg where infection would not clear up. I have no blood clots. I have requested copies of my test results from lung dr. because at this point I can’t even tell you what the results are of the different tests I’ve taken. Read somewhere that we need to get copies of every visit. That is good advice, now I just have to do it. I think with all the test results in front of me and with a little research maybe I could end some of my confusion.
      Does anyone else remember reading or hearing about how preliminary studies showed that with PAH and Serratonin Re=uptake Inhibitors if you were on them when you got diagnosed their results did not show any negative effects, however, if you started the SSRI’s after diagnosis they could exacerbate the PAH. Another case of not being able to find it now. They said much more research needed to be done.

      • #12758
        Brittany Foster
        Keymaster

        Hi Kristine,
        I enjoy reading about what other people are experiencing. I know for me, with any infection it takes my body a lot longer to heal from it. I have had recurring bouts of bronchitis and also get infections on my skin easily because my wounds don’t seem to heal as quickly. I definitely have some sort of weakened immune response due to my chronic illness. I hope that they are able to get to the bottom of this for you. I know it must be a pain in the butt with all the testing especially with having problems with insurance and getting the proper coverage. I know that all of these tests are extremely costly.

        Are you currently on any type of medications or treatments for pulmonary hypertension? I read that you are short of breath easily. Next time you go to your doctor I would suggest having them make you walk around with a pulse ox on to see if there is any difference with your oxygen levels. Previously my doctors dismissed my lifelong shortness of breath as exercise induced asthma but just 3 years ago they discovered that my oxygen levels were dropping below 85 with minimum exertion which is why I now require oxygen therapy for this chronic low oxygen levels that has been going on for quite some time they suspect.

        This is a simple test and one that won’t break the bank while you are waiting around for insurance to get straightened out. Managing these symptoms and not knowing what is going on is extremely frustrating and scary.

        I know what it is like to say “I’m ok” because it sounds easier. It seems like your doctor doesn’t know you as well as mine know me. When I tell my doctors “im ok” they wait and say “yea, now I’ll wait for the truth”. Maybe instead of saying “im okay” you can say something like ” I wish I was okay” or “I wish I could say I was okay” and then it should prompt them to ask you to clarify what you mean. It is a good ice breaker to talk about what it is that is going on.

    • #12755
      KRISTINE
      Participant

      OMG that post is probably the longest in the history of this forum

    • #12759
      Erin McDermott
      Participant

      Brittany,

      Thank you for your reassurance and info!! They’ve ruled out various lung diseases & I’ve hsd the many breathing tests & lung scans. The Pulmonologist told me he couldn’t help me because I had nothing for him to treat (lung disease) although he did want the Cardiologist to do the right heart catheterization to confirm my pulmonary pressure. Maybe it’s best if I contact the Pulmonary Hypertension Specialist clinic in Portland & get their opinion?!? I also have the hole in my heart that the cardiologist doesn’t think is causing the symptoms or pulmonary hypertension, but an adult congenital heart disease specialist may disagree too..

      • #12768
        Brittany Foster
        Keymaster

        Hi Erin,
        From my experiences, my pulmonologist doesn’t treat my PH and doesn’t try to. I see a seperate specialist for this who specializes in PH and in heart disease. I also see an adult congenital heart specialist. ACHA.org has a list of the doctors who specialize in CHD in adults. It all would depend on the size of the hole in the heart and the degree of shunting of blood flow and whether or not that is contributing to the PH. I hope you can get set up with the right specialists and that they are able to help you more. Keep me updated !

    • #13117

      Hello All-
      Quick question- After a run around docs, I finally self referred myself to a Pulmonary Hypertension Specialist and she ordered a right heart cath which showed borderline pulmonary hypertension. My cardiologist echo that i get every year showed pulmonary hypertension. My oncologist( I was diagnosed with Non small cell lung cancer in 2016- had a resection with chemo and radiation and am doing fine right now) said that on my ct scans the pulmonary artery was quite thick. So do I need to be concerned about having pulmonary hypertension or not?

      Thanks all
      Christina

      • #13119
        Brittany Foster
        Keymaster

        Hi Christina,
        my levels are also considered “mild”. My doctors still will say that I do have PH. Everyone is different regarding what they think is causing their PH or contributing to it and the symptoms vary and don’t necessarily have to do with the severity of Pulmonary pressures. I would ask your doctor this question and also ask them what they feel like is contributing to the PH . I would also ask if the PH is suspected to progress and what they will do to track this for you. I know it is a lot of information to take in, but from my own experiences, even if it is “mild” the condition that has caused mine certainly isn’t mild and I need to be monitored very closely.

    • #13180
      Terry D. Blissett
      Participant

      Well I have been undiagnosed with pulmonary hypertension and CTEPH. I am extremely thankful. I have follow ups with my pulmonologist and cardiologist the next two weeks. I am praying and hoping for a clean bill of health. It has been quite a journey since having a saddle pulmonary embolism in October 2017. On an even more positive note, after my spin class on Thursday I suddenly took the biggest engage than I have since all this started. My lungs felt completely full! I don’t know if you guys believe in miracles but I sure do. Please continue to hope and pray for complete healing and good health. And as always, follow doctored orders and always question them. Have a great day!

      • #13182
        Brittany Foster
        Keymaster

        So glad to hear that Terry! Keep up that positive spirit and gratitude. Awesome news!

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