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    • #30399
      Jen Cueva
      Keymaster

      Struggling with breathlessness is never fun. I have found that, more often than not, my conversations are interrupted by this common PH symptom.

      On my good days, I notice this less, but on the other days, it certainly is noticed. I think I notice it more than others. Manny does tell me to rest and then tell him whatever it is I am trying to say.

      Do you find that breathlessness affects your conversations? If so, do others notice? Let’s talk about this.

    • #30410
      Colleen Steele
      Keymaster

      aww @jenc this topic made my stomach drop and tear up. I’m sorry, my input might not be what you want to hear but keep in mind I’m a mom…mom’s notice everything!

      Yes, I always noticed Cullen’s breathlessness interrupting his conversations. Of course I was never annoyed by it, it just broke my heart. I could also tell when he was trying to push through because his face would become more flushed than his norm.

      Many times he would put his arms behind his head and talk. I knew he did this because it helped him breath better when talking. Have you tried doing that? You know what I mean… raise your arms behind your head and clasp your hands together the way you would if resting on a pillow?

    • #30425
      Jen Cueva
      Keymaster

      Aww, @colleensteele, I know this must have been extremely tough to watch as a mom. Cullen was so young and struggling with this. I am sorry to bring this memory up.

      I often notice that I sit up more often. Instead of placing my hands behind my head, I sit with elbows on my knees and leaning forward to open my lungs a bit more. Now, I will have to see if I do the other position you mention Cullen did.

      Big hugs to you.

    • #33165
      Brenda Denzler
      Participant

      I had this happen when I went to the mountains last fall to see the foliage. I became so SOB that I couldn’t speak normally. I had to stop mid-sentence (sometimes more than once) to say anything. And singing along with the songs on my phone, as we were driving to and from the mountains? Impossible to phrase the notes properly.

      • #33173
        Colleen Steele
        Keymaster

        @brendad53 that can be so scary and frustrating when that happens. Whenever my son got breathless while talking he would out his arms behind his head (cupping his finger together). He was just a child when he started doing this. No one taught him to do this he just somehow figured out on his own that doing this helped. Does anyone else do this and does it help you?

    • #33176
      Brenda Denzler
      Participant

      I’ve never had this kind of breathlessness happen before, so I wasn’t prepared for it at all. I’ll remember the “raise your hands” thing, though.

      The fact that this movement makes a difference gives me pause. I’ve had very, very occasional SOB since I was in my late teens (I’m now 68.). It became a serious recurring issue (on a more frequent basis) when I was a little over 50, and I realized that I could *sometimes* get a deep breath if I put my arms up over my head and raised my rib cage. This seems to be the movement you’re describing, Colleen.

      So…does this indicate I’ve had some very mild form of PH for decades? That hardly seems likely, does it?

    • #33177
      Brenda Denzler
      Participant

      BTW…my profile picture? I’m the one in the middle. I look terrible, but I chose this picture because it was taken when my friends and I were in the mountains and I was having trouble breathing. Which is why I’m here. That event made my friends swear me to my most excellent promise that I would contact my doctor again and try to figure out why I couldn’t breathe well.

      • #33183
        Colleen Steele
        Keymaster

        @brendad53 it’s not always possible to determine just when PH started and it takes a lot of research and testing to decide what caused it…and sometimes it’s determined to be idiopathic, which was the case for my son. When is your appointment with the PH Specialist or are you still trying to get that scheduled? I hope they recommend a right heart cath. That is the best way to diagnosis PH, what stage it is in and determine the best treatments to try.

        ————————————————-


        @brendad53
        had trouble posting. She responded:
        My appointment with the specialist is Feb. 24th. A right-heart cath has been suggested to me before by doctors, as one ”what to do next” option among others. Because it’s an invasive procedure and I don’t do ”doctors” and ”medical treatment” with grace and aplomb (to say the least), I have always suggested we try the less invasive things first. So we do, and time goes by, and I forget that PH was ever on the table,….but this time I think I’m going to have to say yes. The trouble is…what if it’s not offered? What if this doctor looks at everything and says, tests so far say you’re fine, so we can’t justify something like a right heart cath. You’re fine. Come back if your symptoms get worse.

        • #33184
          Colleen Steele
          Keymaster

          @brendad53 if other doctors have suggested a heart cath in the past that should have been included in your appointment summary. If you still have those, bring them to your appointment as an example of why you want to have one done. Be honest and explain why you declined the first time and why you now you feel it is important that you proceed with a cath. If they decline is it possible to return to a doctor who recommended it the first time?

          However, if it is PH specialist that you will be seeing than usually they are trustworthy when it comes to care decisions. If PH has been on the table than I can’t see them denying you a right heart cath..

          I understand how hard it can be to brave the procedures and treatment for the first time but if you do have PH it will be so important that you proceed with what doctors and specialists recommend. It’s possible to experience a better quality of life when you have PH but I’m afraid it won’t happen on it’s own.

        • #33185
          Colleen Steele
          Keymaster

          @brendad53 response:

          Thanks, Colleen. The suggestion has been made a couple of times, but I forget the exact doctors–other than a pulmonologist I saw back 2016. Long story. The guy I’m seeing is Dr. Ford at UNC Hospitals in Chapel Hill, NC. He’s supposed to be a PH specialist, so we’ll see what he says. I’ve made a relatively short ”symptoms and symptom history” document to give the whole story to him in an unmistakeable way. We’ll see if it does the trick. But as for the right heart cath…it’s more than just that one procedure that terrifies me.

          It’s all invasive medical procedures. I don’t just get a bit anxious. I panic. I wrote an essay about this that appeared last spring in the British Medical Journal. You can read it at https://www.bmj.com/content/bmj/372/bmj.n543.full.pdf. So the idea of having a right heart cath is both comforting, because it might give us some answers, and terrifying because it might show ”normal” and leave me hanging with progressively worse symptoms and still no answers…not to mention that it’s terrifying in and of itself no matter WHAT it shows. I’m having a small degree of panic right now, and I’m a month out from seeing the doctor!

        • #33196
          Jen Cueva
          Keymaster

          Hi @brendad53, it sounds like the elevation increase in the mountains brought out or increased your breathing difficulties. What area do you usually reside in? Is it at a much lower elevation?

          As @colleensteele suggests, although you do not care to do invasive procedures, the right heart cath would offer so much information that I think maybe help with your diagnosis.

          You have a month to prepare, so maybe you can start thinking ahead and expecting that as part of the plan once you see the PH socialist. You’re not alone when it comes to anxiety and panic while testing. I had an MRI last year, and for some reason, that is one of the ones that bring these emotions out for me. I shared this in a column, too. Here’s that link.

          That exercise will expand the rib cage, thus offering more room for your lungs to grow, so it makes sense why this helps.

        • #33198
          Brenda Denzler
          Participant

          The increase in elevation was only 3000 feet above my home elevation. My PCP thinks that likely wasn’t enough to cause my symptoms to be that extreme under normal circumstances. So we’re looking at what might have been abnormal to account for what happened.

          I know I probably need to have a right heart cath, and if one isn’t offered, I probably need to push for it. But I will have some qualifiers for doing it, I think. One of them is: no students. No one less than a fellow in the physician hierarchy. Another is to have an anesthesia plan in place–starting with none, and going up from there as needed.

          Truth? If I don’t get satisfactory help from the doctor at the end of February, @mamabear has encouraged me to seek an opinion from San Diego. So I’ll be doing that.

        • #33217
          Jen Cueva
          Keymaster

          Hey @brendad53, I hope you get some answers and more information next month. But, I agree with @mamabear007, UCSD would be the next place, and I know they know what they are doing, as does MamaBear.

          Thank you, @mamabear007, for referring Brenda here and also helping her. See, I always say how much you are helping others!

        • #33219
          V.R. Peterson
          Participant

          @brendad53, the important altitude is total, not the difference from your home altitude. My son’s home altitude is about 4,400 feet above sea level, and before his PTE surgery, that altitude made it very hard to breathe. When he traveled to San Diego (which, depending on where in San Diego, is from 32 – 580 feet above sea level) it got easier for him to breathe, even before he had his surgery.

        • #33236
          Brenda Denzler
          Participant

          V.R., the elevation at Blowing Rock is between 3500 and 3600 feet. I figured that I was used to the elevation where I live, but couldn’t handle the extra elevation when we went to the mountains…..?

        • #33244
          Jen Cueva
          Keymaster

          Hi @brendad53, yes, that extra 3000 feet of elevation certainly could impact your symptoms. As @mamabear007 said, it’s more about the total elevation. Everyone is different, but after living in Texas, 3000-3500 feet of elevation is when I usually feel the altitude symptoms.

        • #33245
          Brenda Denzler
          Participant

          Well, that extra altitude made things bad for me. Really, really bad. Really bad.

    • #33186
      Denise K Thompson
      Participant

      Piecemealing conversations seems to be my norm, especially while moving. I’ve been wondering lately if others wheeze after they get short of breath. It’s not suppose to be a symptom & I actually stopped using my rescue inhaler for a long time, but the wheezing is back every time I’m sob now.  Dragging my feet going back to pulmonologists. (I have two). I’m taking a doctor break. (Altho have a phone appt this afternoon with my rheumatologist).

      • #33197
        Jen Cueva
        Keymaster

        Hi @dinky1952, great to see you pop in again.

        I don’t have wheezing but have had it when I have bronchitis. Because it can be common to have chronic bronchitis with PH, that may be something to ask your pulmonary doctor; when you do, go ahead and make that appointment, Denise.

        I can relate to your “dragging your feet” comment. It can sometimes be exhausting when we have multiple doctor appointments and are already fatigued. But, if this wheezing is a concern and you’re due to see them, hopefully, you can fit it in soon.


        @brendad53
        , most report wheezing sounds more like a whistle so that you could be thinking. But it can vary from one person to another. It can also happen when breathing in or out, not only when moving about.

        Working in nursing before PH, the “Rice Krispy” sounding breathing was more commonly discussed with crackles, which can be part of wheezing or separate lung sound. I used to have an audiotape in nursing school that made sounds that we would hear assessing lungs, it was helpful, but then, in reality, everyone is different.

      • #33215
        Brenda Denzler
        Participant

        BTW, Denise….you said you’re 69. Someone my own age who’s dealing with this! May I ask how long you’ve had the diagnosis and how long you were sick before you were properly diagnosed?

        • #33237
          Denise K Thompson
          Participant

          Brenda, I’ve been diagnosed for about 3 yrs., although was misdiagnosed with asthma prior to my first echo. (My Lupus & sjogren’s diagnosis prompted them to look deeper when my symptoms just kept getting worse. You?

        • #33242
          Colleen Steele
          Keymaster

          @dinky1952 Brenda, @brendad53 is having some issues posting so she asked me to share this response with you.

          I’m in search of a diagnosis. I’ve kept getting worse for years. Telling doctors. Doctors say, ”Your bloodwork is fine,” or ”There’s not much on your scans,” and so I just go along and get worse and worse some more.

          My echo doesn’t show a lot of anomalies. Some parts of the heart were poorly visualized last time. But this is not uncommon, and nobody has yet taken all of these little bits of poorly visualized organs and put them all together to wonder.

          The only thing that makes them wonder — eventually — is my symptoms, which keep getting worse and worse. When I tell them that I’m losing my functional ability, they kinda shrug and don’t know what to tell me. But when I report that people AROUND me are becoming alarmed, then doctors seem to take a bit more notice. Hence, my upcoming appointment with a PH specialist.

          I honestly have felt for the last few years that I’m slowly dying, and nobody is paying a whole lot of attention to that fact because it’s happening in slow motion. I hope that I get some answers that make sense of the symptoms, when I see this specialist.

    • #33187
      Brenda Denzler
      Participant

      Denise, I don’t wheeze per se when I get short of breath. At least, I’ve never noticed it associated with that. But I do get what I call “Rice Krispies” breathing. As I inhale, it sounds like I’ve got a bowl of Rice Krispies in the throat/lungs that are going snap-crackle-pop. I’ve associated this with an allergic reaction, because I don’t always have to be moving around to get that Rice Krispies thing.

      I’d be interested in know what “wheezing” feels or sounds like, to those who have that issue.

      • #33218
        V.R. Peterson
        Participant

        @brendad53, I get wheezing when I’m experiencing asthma. I can hear it better with my fingers over my ears (which probably amplifies the sounds inside my lungs). I can only hear/feel it on the in breath, and to me it sounds like a whistling.

        This is opposed to the breathing sound I have when I have either bronchitis or pneumonia, which sounds like a rattling in my ears on the out breath. I can hear this better than asthmatic wheezing, sometimes even without my fingers in my ears.

        • #33235
          Brenda Denzler
          Participant

          I’m going to have to try listening to my Rice Krispies breathing that way, V.R. New idea!

        • #33246
          Jen Cueva
          Keymaster

          Hey @mamabear007, you did an exceptional job at describing the differences for you between the two lung/breathing sounds.

          Wheezing is most often linked to asthma or other lung diseases under COPD.

          Yes, doctors often describe pneumonia breathing as rales or crackles.

        • #33247
          Brenda Denzler
          Participant

          I noticed myself “whistling” lightly on the exhale yesterday a few times. So *that* is what people mean when they talk about wheezing.

    • #33230
      Valerie
      Participant

      Hello everyone!
      I have shortness of breath fits into: talking, laughing and singing. A few years ago, it was easier for me to laugh. If I laugh a lot now, then in five seconds I’m suffocating. Often, along with this, there is a feeling that there is zero oxygen in the brain. And when I tell something, it’s best for me to stand or sit. If I’m talking and walking slowly at this time, I’m already suffocating a little.

      @dinky1952
      , maybe I understand what you mean. I had a few moments (mostly in childhood) when I had to walk fast and without stopping. When I finally could stop, I was wheezing a little, and also felt numbness and burning in the airways.

      @colleensteele
      , raising your hands is an interesting idea. I’m interested in trying it out. But I have a little doubt. In some video about exercises with PH, the instructor said that the patient should not do such exercises so that his hands rise above the level of the heart. Maybe I misunderstood something? Or maybe it’s not so important if person uses this method for just a couple of minutes during a conversation?

    • #33451
      Debbie Moore
      Participant

      @brendad53 I was diagnosed in May 2021.  I noticed sob when I traveled to higher elevations.  Then it just got worse.  It was harder for me to carry my laundry to the laundry room or walk to the mailbox.  It seems like the sob was more frequent.  By the time I went to my PCP, I couldn’t walk from the parking lot to the office without my O2 dropping into the 60s.  I’m saying all this to encourage you to tell that doctor what this could possibly be.  It took many tests and 6 months for a diagnosis.  So please waste no time.

      • #33461
        Brenda Denzler
        Participant

        My symptoms have been growing for a decade. Recently they’ve gotten noticeably worse. But…I don’t have a drop in O2 when I move around. I have a drop when I’m sitting or resting. But when I move around, my O2 goes up 2-3 points. Is this normal? Or would this indicate that whatever it is I have, it CANNOT be PH?

        • #33462
          Brenda Denzler
          Participant

          Mind you, when I’m up and moving around, I feel SOB and my heart races. But my O2 levels are in fact 2-3 points higher than when I’m sitting or resting.

          When I’m sitting or resting, I don’t tend to feel SOB (usually) or have a racing heart. But my O2 levels are 91-93.

          Weird, huh?

    • #33463
      Sally Hoffman
      Participant

      Hi Brenda,  I don’t know if this will help you or not, but I just completed my third Cath.  My first was in early 2019 and diagnosed my PAH and determined that I responded well to Nitric Oxide.  My second one was in mid 2020 when my doctors were at a loss to determine why I was suffering from extreme SOB while during treatment.  The Cath determined that I was suffering from fluid overload.  I just had my third one after a new pulmonologist was considering whether I was suffering from PH instead of PAH, caused by Aortic Stenosis.  She thought I might benefit from Valve Replacement.  I really wasn’t suffering from much I have been on Adcirca and Uptravi for quite some time and the progression of my disease had ceased.  We had recently added more diuretics to my routine and I was doing much better.  We did the third Cath, partly because my Echo and my symptoms were a bit off.  For each Cath shortly after arriving and beginning to undress I was given Valium.  This was enough to have me relaxed enough to be able to think about other things and talk to the nurses.  Upon arriving in the OR you are given either light sedation and able to stay awake, or heavier sedation to put you to sleep.  You can decide that with you doctor.  I am a very curious gal and like to stay awake.  I really don’t know what order  certain things occur, but you can always ask.  You will get a local so you are not aware of the sheath entering your leg or collar area or arm.  All three of mine were in my groin.  First time I asked a lot of questions, and watched along on the monitor. They were happy to answer me while the procedure was occurring.  Second time it was a new doctor and he felt he didn’t know me well so he had me go to sleep.  Third time I asked to be awake but couldn’t see the monitor.  But I could freely converse with them.  As a result of the initial tranquilizers, I never had a moment of concern, nervousness or anxiety.  If they saw that occurring they would deal with it without you even being aware.  The was never a drop of pain.  Everyone, and there are a few necessary people in the room, but everyone is very supportive.  You can ask their names and speak with them and even joke a little.  You just lie there and relax,  If anyone says anything has interests or concerns you, you just ask.  The second time, when I was asleep, I remember saying something and then the doctor was next to me holding my hand. I asked when we were going to start and he said we are already finished.  The absolute hardest part of a Cath is that you need to keep your leg still for several hours.  At first you couldn’t care less.  As time goes by your might have visitors or phone calls etc that help you keep you mind off wanting to move you leg. You can read, watch TV, eat, anything except move your leg.  Even going to the bathroom is taken care of without a catheter  Then, you get to go home.  All three times there were no after effects.  I hope this helps alleviate your anxiety.

      • #33464
        Brenda Denzler
        Participant

        Sally, thanks. Knowing that it has been that easy for you does help lower my anxiety levels a bit. However, I won’t be having sedation. I had a hysterectomy without sedation. I have all my colonoscopies without sedation. I will not have sedation for a right heart cath.

        Which is kinda why I’ve wanted to know what it feels like. The online sources give you the technical, step-by-step details of HOW it’s done. But the websites seldom tell you WHAT it feels like. Hearing your experiences certainly helps me with that.

    • #33467
      Terry
      Participant

      Hi Brenda,

      When I had my RH C  I had no form of relaxant and felt nothing except one of the nurses pushing my head down when I kept on trying to have a look at the moniter. I was not allowed to move my leg for four hours so after four hours I walked out and caught a cab home. I walked gently if you  know what I mean for a day or so . Its no big deal . Oh, make sure you go to the loo just before .

      • #33468
        Brenda Denzler
        Participant

        Thanks, Terry. That’s useful to know. That makes 3 people who have said that it’s not a huge deal. A small deal. But not a huge deal. Not overly painful. Able to be done without sedation.

        I assume that I will have to have someone to take me home, afterward? I won’t be able to drive, yet?

        Also…do I need to have someone with me for 24 hours afterward? I read somewhere (if I’m remembering correctly) that you need to not be alone for 24 hours afterward, just to be safe. Is this true or am I remembering incorrectly?

    • #33470
      Terry
      Participant

      Brenda , Mate, From my experience the only reason sedation is administered to some is to relax them so they will not panic . The only possible pain to the procedure is when they put the canula in the groin and even then they will wipe the area beforehand with ,whats the word? Cant remember, that deadens
      the area ,  The covid needle was worse. NO PAIN trust me you do not feel anything the whole time. Driving will be a no no for 24 hours even if no sedation as you don’t want a bleed from excessive movement of the leg . I caught a cab by myself to and from the hospital but I did assure the nurse there was someone home.  I said previously its no big deal. It is a big deal to establish
      if you have PAH but ,for me, painless.

      • #33471
        Brenda Denzler
        Participant

        Thanks, Terry. This is good to understand.

        However, today I looked in my patient portal and saw that my doctor’s appointment with the pulmonologist this Thursday (U.S., east coast) is an hour long. I thought, “Great! That’s plenty of time to talk!”

        Then I saw that I report to a patient testing room. In other words, no. I don’t get all that time to talk to the doctor. I have to take some standard breathing function tests first. The trouble with this is

        For the last 10 years or more, I’ve been getting worse and worse, and EVERY TIME I have had any kind of test (including basic lung function tests and a cardio-pulmonary stress test), the results say I’m fine. And doctors don’t pay much attention to your symptoms and try to understand them if you pass their tests. They say it’s all in your head, or you’re too fat, or you’re out of shape, etc., and you’re shown the door.

        I will probably not even get to the point where a doctor will want to do a right heart cath, I now fear.

    • #33472
      Terry
      Participant

      I meant to mention above instead of laying there worried about it take an interest in whats happening and ask questions until they tell you to shut up. When I had a stent put in a heart artery they set up the moniter so I could watch , gave me two valium and bugger me I fell asleep and snored through the whole procedure. Not only did I miss the show they were not happy about my snoring . I don’t snore mind you

      • #33473
        Brenda Denzler
        Participant

        Oh, I have no trouble at all lying there and asking about what’s going on. That is my default mode of operating in such situations!

    • #33474
      Terry
      Participant

      10Years wow, What can I say. I told my  Rheumatologist and he sent me to Respiratory at a large Public hospital. Following numerous CTs , respiratory tests, lung flush,Bronchoscopy, blood and iron trans/ infusion over a period of three years I was told I had mild emphysema and gave me the option to close the file. I did and then  saw my cardiologist and told him and he gave me a cardio stress test which highlighted severe pulmonary hypertension. Its no good flogging a dead horse mate. If your not getting answers see someone else .

      • #33475
        Brenda Denzler
        Participant

        The last 10 years have been a series of “someone else’s.” No, I don’t have sleep apnea. No, I don’t have a heart condition. No, I don’t have an autoimmune condition (a few years before my Hashimoto’s diagnosis, I might add). No, I don’t have a low thyroid (although in retrospect, I most certainly did). No, I don’t have a neurological condition. No, I don’t have severe reflux. No, you don’t have a PE (although 7 months later, they found out I did). No, the cancer hasn’t come back. All of the above accompanied with the messages, repeatedly delivered, that I am “just anxious” or “overweight” or “deconditioned.”

        And yet, across that 10 years, my symptoms have increased in number/kind and increased in frequency and severity.

        I guess I had begun to hope that this physician visit would be an answer, finally. And a treatment strategy could be built around it. I’m now in the process of sealing off that hope, expecting more disappointment, and moving on as best I can.

    • #33480
      Jen Cueva
      Keymaster

      Thanks, @terry, and @mainegal, for your support by sharing your experiences with Brenda. Brenda, as you go to your appointment, the usual test are PFTs or pulmonary function tests, 6MW (6-minute walk test), Echocardiogram, and may include blood work, VQ(ventilation-perfusion scan), and chest x-rays or CT scan. These are all non-invasive tests done by most PH centers in some capacity. So this is the norm to obtain a PH diagnosis while also ruling out other things and/or why one has PH.

      Of course, as we have mentioned, the next step is usually an RHC (right heart cath). But please don’t let that cause anxiety; if that is needed, that means there is a possibility that they see something and want to learn more. It can also mean they need to confirm or rule out a PH diagnosis. RHC is the gold standard.

      Have your notes ready and know that you may need a short version of your symptoms, etc., for the nurse and doctor. If you have a ton of notes over the years, maybe take copies so they can keep, and when the doctor reviews all of your tests and notes from the visit, he can dive deeper. This is just my suggestion since you have a ton from the past 10 years.

      Or you could make a list of the most bothersome symptoms and questions from the last 3-6 months say. This will offer a recent window into your life.

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