New with Questions! 2018-02-15T20:42:05+00:00

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  • Kelly
    Participant
    Post count: 3
    #8087 |

    Hi- I am not currently diagnosed, but I went to the cardiologist last month for a racing heart and shortness of breath – both symptoms come and go. Just going up the stairs now sometimes has me out of breath and I’m 39 and in pretty good shape.
    They did an echo and just sent me on my way with some metoprolol after EKG’s were ok. I got a copy of my echo report that listed PAP of 24 with trace tricuspid regurgitation.
    I’ve since asked my primary and a second cardiologist about this and the cardiologist just told me that 24 was normal. My primary said a cardiologist was the right place to be (aka we don’t know.)
    I feel like I’m being blown off. The metoprolol might help, but I don’t want to start it and just mask symptoms – I’d like answers as to why my heart will sometimes jump to 130-140 just sitting at my table?
    Would like advice on what to do! I contacted the pulmonary hypertension department at our local university and was told I need a referral and they want all the tests (cath, etc) done before I see the doctors.
    Can any cardiologist accurately do the diagnosis via cath? I’d prefer a specialist to do the cath and diagnosis, but maybe that’s not their area of expertise.
    Thanks for any advise or direction you can give.

  • Lisa
    Participant
    Post count: 18

    Kelly I’m in no way a medical professional and am not qualified in anyway to give advice as most of us on the forum. However you stated that your PAP was 24–that sounds fairly normal to me and not necessarily PH. I don’t know why you think you might have PH there are other things that can cause shortness of breath and heart racing. Several years back when I started having some of the same symptoms you described, I went to my PCP who referred me for an ECHO which I was then referred to a cardiologist. Turns out I had AFIB. (where your atria (top chamber in your heart quivers instead of beats. It can cause erratic beats and fast heart rates also shortness of breath and lightheadedness as well. If it is AFIB Metoperol is one of the first line choices to treat the condition because it helps slow your heart rate down. My suggestion would be to ask your cardiologist if it is AFIB that’s the culprit. The trick about afib is sometimes it’s proximal meaning that it comes and goes and sometimes takes a while to catch in the act. so to say. when they do an ekg it only shows what your heart rate is at the time they do it which is usually a 5-maybe 20 second strip at best. of course if you’re in normal rhythm then it isn’t going to show up (happened to me several times before they actually caught it) sometimes you might have to wear a monitor for a few days to a month or so. You might want to consider getting in touch with a good EP if it is a rhythm disturbance (EP’s are specially trained cardiologists that deal with the electrical signals of your heart–regular cardiologists deal with plumbing issues–ie clogged arteries valves etc) Good luck to you in your journey.

  • Patricia
    Participant
    Post count: 32

    Hi Kelly. Here is my two cents — any cardiologist that knows how to correctly perform a right heart cath and knows how measure the pressures and cardiac output can do it and pressures above 30 are abnormal.

    One of my first symptoms was palpitations, they did an electrophysiology test and found I had Wolf-Parkinson-White, which causes irregular heart beats, because of extra electrical pathways on the heart. They tried ablating but they were not able to do it until years and years later. Before they finally ablated, I had tachycardia twice with my heart beating at 235 beats per minute. Now three years after the ablation,I rarely get palpitations. So talk to your doctor about checking you for extra electrical stimulation in your heart. Good luck, God bless.

  • Ava
    Participant
    Post count: 29

    Hi Kelly,
    I agree with the others – any cardiologist can do a Right Heart Cath and if things are abnormal, you can then find a PH Specialist. But since your shortness of breath comes and goes, it makes me think it’s not PH.
    In my experience, the shortness of breath associated with PH was a very subtle thing to start – enough that I found myself avoiding physical activity without consciously realising why I found it so hard. And over the space of a few months it became more pervasive, like a gradual worsening, so even normal activities left me short of breath (by which time I thought it was just because I was unfit). But it was always there – it didn’t come and go. My palpitations didn’t start until a couple of weeks before diagnosis, at which time my Right Heart was massively enlarged. I was aged 42 at diagnosis and also relatively fit prior to the onset of symptoms.
    If you think there is a link between your symptoms and exercise, you can also ask about having the Cath done while exercising. Sounds scary, but they can put you on an exercise bike and do the Cath through your arm, allowing them to check how your heart performs whilst working at different levels. It probably won’t be their first option until they’ve ruled out more common problems, but it’s something to be aware of.
    Best of luck, and do let us know how it goes!
    Ava

    • Lisa
      Participant
      Post count: 18

      Ava — where you mentioned gradual SOB! hit it right on! That was my problem even when I little and growing up! and then as I got older just ever so gradually you start not doing things or avoiding activity because it was just so hard (I realize that now but didn’t then) in my case they’re still saying heart is causing it but i still have doubts because I don’t have any kind of heart disease. I had abouts of afib and was born with an ASD that was repaired when I was 25. Although when my heart failure dr. did my cath in September he said it was due to Poor left atrial compliance (my heart is stiff and won’t relax) I was in on a PH support call last night and more and more it makes me wonder if it’s all due to the PH but the drs are saying the heart problem is causing the PH. who knows

  • Kelly
    Participant
    Post count: 3

    Thank you everyone for the answers and thoughts. I guess I fall into a gray area – from what I’ve read, pressures of 21-24 are borderline but always show symptoms in one study I read. Normal readings should be 12-20. I guess my concern is if I’m already borderline, I’d like to do what I can to slow progression, be followed more closely, etc.

    • Ava
      Participant
      Post count: 29

      Hi Kelly,
      You’re right, it’s best to follow up and be sure. On an echocardiogram, the PAP shown is usually a systolic PAP – and anywhere up to 30 (or even higher) can be considered normal. The diagnostic criteria for PH (from memory) is a Mean PAP of more than 25 – but such readings can only be taken by doing a Right Heart Cath.
      For perspective, I’ve been diagnosed 3 years and live a fairly normal life with treatment (I no longer run, but I can climb hills and stairs without shortness of breath, I go hiking in the mountains, I sail regularly etc) – and at my last Echo my PAP was 67. At diagnosis it was over 100 (whereas the Mean PAP from my Heart Cath at the time was around 80).
      In my experience, doctors will ALWAYS look at the severity of symptoms rather than the actual numbers. PH is a very complicated disease that affects people differently – so someone can be very symptomatic with low pressures, while others (like me) seem to have fairly mild symptoms with high pressures. Even now, my doctor doesn’t really care too much what my pressures are – he’s more interested in how symptomatic I am.
      Your symptoms are obviously causing you some concern and I think you’re right to follow up. I guess what myself (and possibly the others) were trying to do was reassure you that from what you’ve described, to us PH is a less likely diagnosis than something like AFIB or some kind of ‘electrical fault’ with the heart. Dealing with doctors can be very frustrating (we’ve all been there!) so what you’re hearing from us is probably similar to what you’ll hear from the doctors (they won’t start looking for PH until they’ve eliminated other, more common, problems). So be prepared the path to diagnosis can be long – several months is quite normal, and some PH patients take years to be diagnosed. We really hope you DON’T Have PH, but we’re here for you as you go through the process of looking for a diagnosis – whatever it turns out to be.
      Look forward to hearing how it goes, and again, good luck!
      Ava

    • Kelly
      Participant
      Post count: 3

      Thank you all so much for taking the time to write such thorough responses. I will continue to investigate.

  • Tracy
    Participant
    Post count: 1

    Newly diagnosed PAH in October. I’m on Adcirca and letaris. I have a cold for the first time since all of this and it is the worst ever. My nose is so congested I can’t breath. Congestion starts really bad at nighttime and then improves in the morning. I’m in the recliner tonight and no relief. Just wondering if anyone has experienced that a cold is a lot more miserable with PAH or not? Thanks

    • Ava
      Participant
      Post count: 29

      Hi Tracy,
      The short answer is Yes – any kind of respiratory illness will be worse with PAH. The constriction of the Pulmonary arteries already makes it more difficult for your blood to be adequately oxygenated as it passes through the lungs, so any kind of fluid in the lungs (whether from mucus/phlegm or from fluid retention) further inhibits the transfer of oxygen (from lungs to blood), leaving you more short of breath than usual.

      Is your doctor getting you to monitor your fluid levels and has he prescribed diuretics? (See my post on fluid retention and shortness of breath for more detail). Often when we have a cold we want to drink more and/or eat things like soup – and if you have any fluid retention, this will make things worse.

      If my fluid retention is really bad (and having a cold will always make it worse), I also have to sleep sitting propped upright. The super-simple version is that during the day, gravity keeps a lot of blood and fluid in our legs and lower body, but when we lie down at night, all that blood and fluid is free to circulate through our lungs (hence more fluid, less efficient lungs, more shortness of breath and/or coughing).One of my Big Red Flags for fluid is if I start coughing within a couple of minutes of lying down, but then it clears up and I stop coughing when I get up and move around. (You can look up something called Orthopnea or Paroxysmal Nocturnal Dyspnoea – even though they don’t specifically mention PAH as a cause, they do talk about Heart Failure, which is basically what happens when your PA pressures affect your heart).

      Key thing is to get rid of any excess fluid, whether through a higher dose of diuretics or a nasal spray/medication (approved by your doctor) to reduce mucus/phlegm -or both. (If your doctor hasn’t explained how to monitor fluid levels, it’s pretty simple -just weigh yourself first thing each morning after you’ve been to the toilet, as it’s important to do it at roughly the same time and in the same sort of clothes each day. If you gain any more than 2lbs in 2 days, it’s fluid and you’ll need diuretics, sometimes lots of diuretics). As weird as it sounds, activity also seems to help – even walking slowly around the house helps me (if I walk too fast or do too much I can’t get enough oxygen and I’ll get more SOB, but if I go to bed and do nothing it also makes me worse – you have to experiment to find that middle ground).

      Prevention is also important. Even though I’m 45, I get the flu shot each year and am vaccinated against pneumonia. I also carry hand sanitiser and use it after I’ve been in public places. And if there is a high incidence of flu/colds going around I try and avoid crowded places and cut back on my social activities – I’ve had a few instances where I’ve caught a cold since my diagnosis 3 years ago and I know just how sick it makes me. You may also want to buy a Pulse Oximeter that slips over your finger and reads your blood oxygen levels -anything lower than 95% should be reported to your doctor.

      Good luck, and let us know how you are going. Don’t be afraid to contact your doctor too -while we may not ‘normally’ see a doctor for ‘just a cold’, when you have PAH a simple cold can become a serious problem very quickly. Your local GP should be your first point of contact and should be working with you and your PAH Specialist to address any of these problems as they crop up ie. have an ‘action plan’ in place with you so you know when to contact them or when to go straight to the ED or when you can try and manage it yourself. Self-management does get easier with time as you learn what triggers a worsening in your PAH and what helps it, but for the first year I spent a LOT of time at my doctors! Even now, my PH Specialist says that if I can get myself feeling better within a week, my GP and I have to contact him – even though he’s a three hour drive away. So a good relationship with your doctors (both general and specialist) is really important.

      Hang in there,
      Ava

    • Beth Slaunwhite
      Participant
      Post count: 2

      Hello Ava,
      Can you possibly tell me where I can find your post on fluid retention? I still find I cannot navigate this new site, and tend to stop looking at it. “See my post on fluid retention and shortness of breath for more detail). Often when we have a cold we want to drink more and/or eat things like soup – and if you have any fluid retention, this will make things worse.”

      Thanks in advance,
      Aries

    • Ava
      Participant
      Post count: 29

      Hey there stranger!
      So good to see a familiar face (voice!?) Yes, I’ve had some problems with the new site and have emailed the PHA team with my concerns – I’m hoping they can fix things soon! It almost seems like different people can see/access different things, so I’m hoping my directions to my previous post work for you.

      When I first login I have a list of different forums to choose from (or else click the ‘Forum’ button from the list on the right that says ‘Profile, Messages, Forums, Groups etc’). Open the General Discussion Forum (on my page it’s at the bottom, with the PHA Conference Forum at the top of the list). Once you’re in the General Discussion Forum this thread (New With Questions, I think it’s called) will be at the top. My thread on Fluid Retention and SOB should be about number 6 or 7 if you go down the list of topics/threads.

      If you still can’t find it I’ll copy it and email it to you. I’ll email you anyway -would love to catch up – but it will probably be another few days. I have visitors at the moment so things are a bit busy (I just checked in to the site while I’m having my morning coffee). Talk to you soon,
      Big hug,
      Ava

  • Ava
    Participant
    Post count: 29

    Oops, that should read “if I can NOT” get myself better within a week, I should contact my PAH Specialist.

  • Richard Borden
    Participant
    Post count: 7

    I am not a medical professional, but, I am VERY well read up on my disease and I disagree with many of the answers. I CAN’T say you have PAH but in the US the standard is 25 mm/Hg mean PAP IS the cut for PH. Echos are not accurate they can be off + or – 20 mm / Hg in error rate. This is why most Dr.s insist on a RH cath before pronouncing diagnosis. If it were Me I’d be looking for a Pulmonologist specializing in PH for a 2nd opinion.

  • Anaa
    Participant
    Post count: 2

    Hello all,

    I am having idiopathic pulmonary hypertension my PASP in 35 mm/hg trough RHC.Does anyone got pregnant because for me doctors are saying it’s risky

    Regards ,
    Anaa

    • Ava
      Participant
      Post count: 29

      Hi Anaa,
      I STRONGLY recommend you listen to your doctors on this. My doctor told me very plainly that if I got pregnant after my diagnosis I would die.

      Firstly, PH medications cause birth defects, so you would not be able to take medication for approx 1 year (assuming you fell pregnant in the first 3 months). Because PH is progressive, it can do a LOT of damage in that year.

      Secondly, because your heart and lungs will have to support your baby as well as yourself, they will be put under a LOT more pressure than normal. The increased blood volume in your body alone will be enough to dramatically increase your Pulmonary Artery pressures. So nine months without medication during pregnancy will cause a lot more damage, more symptoms, and a quicker deterioration than nine months without medication normally would.

      I don’t mean to upset you, but I have never heard of a successful pregnancy after a diagnosis of PH. I have heard stories of a couple of women who tried, but sadly died before the end of their pregnancy. I know other women on here have talked of harvesting their eggs – I don’t know if that is something you could speak to your doctors about.

      Best wishes, and please keep us updated,
      Ava

    • Anaa
      Participant
      Post count: 2

      Hi Ava,

      Thanks for update.I will keep updated.

      Regards,
      Anaa

  • Sharon McDougal
    Participant
    Post count: 1

    Hi. I’m new to this site and have had PAH and RA for over 10 years. I feel very blessed that I’ve lasted this long with the medication and diagnosing of PAH early. I find that I am having more trouble lately, not being able to walk as far or do as much. I get very weak and feel faint and out of breath more often but the biggest problem is that I get chest pains after even light exertion or sometimes I wake up with them. The chest pains are all across my chest like someone is sittings on me and sometimes go down my arm, but tests show I have not had a heart attack. I have had these ever since I first had PAH but now they are every day and inhibiting my daily activities in a big way. When I attended a Pulmonary Rehab class we established that I needed to just lay down if the pain level got to a 3. I am very mindful of my activities and try to moderate what I do so I don’t bring on chest pain and in the past, I very seldom got myself above a 3. But in the past year, I am getting severe chest pains (level 8) doing very little. Does anyone else have this as part of their PH symptoms? I have a great cardiologist specializing in PH but even he doesn’t know why this happens. Any feedback would be appreciated.

    • Ava
      Participant
      Post count: 29

      Hi Sharon,
      Welcome to the site and thanks for sharing your experiences with us (it’s always wonderful to hear from long term survivors so we know there is hope!)

      I just wanted to let you know that one of our members (username: Aries) has also had ongoing problems with chest pain since she was diagnosed a couple of years ago. From memory, she had troubles getting her doctors to acknowledge it was related to PH even though she knew it was related. I’m sure she will be very interested to talk to you about your experiences, but she is not on the site every week. So it may take her some time to get back to you.

      I haven’t had problems with chest pain so unfortunately can’t be of much help, but do check back in case others can help in some way.

      Regards,
      Ava

    • Ava
      Participant
      Post count: 29

      Hi again Sharon,
      I just wanted to ask (for those of us who have not had PH for as long), what medications you take for your PAH? Have you been on the same medication since your diagnosis or have you changed at all (eg. Gone from oral meds to IV)?

      I’m currently on Opsumit (Macetentin) and Revatio (Sildenafil). Plus diuretics and blood thinners (I have Idiopathic PAH). But my doctor has mentioned changing my medication if my pressures get much worse (we only have 8 PH meds currently approved for use in Australia, and the latest oral med, Uptravi, isn’t one of them).

      Has your doctor suggested changing your meds are your symptoms get worse?
      Thanks,
      Ava

    • Beth Slaunwhite
      Participant
      Post count: 2

      Hi Sharon! Thanks Ava for the heads up. As you know, I used to be a regular on this site, but have had such difficulty navigating it, that I had all but given up. It was such an important lifeline for me when I was first diagnosed, so I just hate to totally abandon it. For the PHA ppl reading this, Ava privately emailed me to check here, lol. So Sharon, I too, have chest pain. I am an analytical soul, so in my case, I have disected this problem far too many times. There have only been a handful of times that my chest pain was a level 8, but before diagnosis, even a 3-5 was concerning since I did not know what caused it. I NOW know it is from PAH, so don’t question it. I truly think it got worse over time, and my right ventricle was enlarged at the time that I actually felt like someone was sitting on my chest. I presented in ER three prior times with chest pain, left arm pain, once even jaw pain, but only on two occasions around that time did I feel the pressure. Once I had to pull over as I was driving. It went away in an hour. The second time, it really was upsetting as it would not stop. I went to ER, and as usual they quizzed me about pressure, and it really was the first time I was able to say yes, pressure, but not an elephant. More like a St. Bernard. But my heart rate had also been 135 at rest at that time. My gp gave me a nitroglycerin spray, and OMG, it works! When first diagnosed , my PAH team said no to the spray,so I stopped. 3 weeks later I begged them to allow it. The cardiologist said go ahead, it shouldn’t help, but really won’t hurt. He also told me that chest pain does not go with PH, so I can’t say I have faith in my team. I know almost everyone else in the PH community says it is dangerous to use nitro,but my gp and cardio are quite ok with it, if infrequent. I used it probably once every couple of weeks in the beginning, and it worked all but once. But as my ventricle returned to normal, and my pressures lowered to around 38 on echo, ( near normal) I find my chest pain is usually a 3, and usually happens when I have overdone it….stood or walked or shopped or anything over 4 Hours. It never happens WHILE I am doing an activity, always later. I often go to sleep with it, and wake up with it. Because others have said nitro is dangerous, I tend not to use it unless it is really bad, and it still works, every time. My team says the pain is not because of my heart, since it appears healthy. So I assume it is my pulmonary artery. Also, it is always in the same place. As for you, I do hope you have told your team that the pain is increasing in both frequency and intensity. I hope they do an echo and see if your ventricle is enlarging. I too would be concerned, as your symptoms are increasing. Your Activities of Daily Living (ADLs) are affected. I would wonder if your pressures are not being managed. Please let me know what they say. Much luck to you on this journey. Sorry for the length)

  • Karl
    Participant
    Post count: 1

    I am newly diagnosed with CTEPH and this is all very new to me. I’m trying to get a handle on what to expect, and, frankly, timelines. My doctor says I’m advanced stage. My cardiac output is 1.8 and the cathaterization shows a pressure of 42. Oxygen saturation in the heart chambers averages to just under 60%.

    Are any of you willing to share your numbers as a means of comparison for me?

    The diagnosis is a relief in some ways. Finally, I understand the bloated stomach, the puffy morning eyes, the shortness of breath, the coughing, the fatigue, etc.

    I’ve been evaluated for the endarterectomy but am not a candidate.

    I’m soon to start 2 drugs and next month will be evaluated for a continuous IV drug, with a port and a battery powered pump. Does anyone have experience with this type of delivery system, which reminds me of insulin pumps for diabetics?

    Any observations, information, or advice will be greatly appreciated!

  • Valerie
    Participant
    Post count: 1

    How do you ladies strap on the CADD-Legacy 1 onto your leg under the skirt? Duck tape worked but it hurt when I peeled it off.

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