Has anyone had an unusual cause of PH?

Hi - I've posted here before and got lots of useful advice. For those who have read my posts, you will know I've had a very confusing time with lots of docs not being sure what's causing my rapid heart beat at rest and SOB on mild exertion.

I saw a very qualified specialist today and had a ton of tests, and the short version of what he said is that I have some symptoms that suggest I might have pulmonary hypertension, but a few others that don't! The way my breathing has deteriorated so dramatically in just over a month is one of the things that is confusing him. He confirmed I definitely do not have COPD but cannot say for sure what I do have.

Basically, I've got to have a catherisation on Tuesday to both sides of my heart. He said it's the only way to accurately measure the pressure on the right side of my heart that showed up on the echocardiogram.

I asked about sarcoidosis but he says that, even though I've had something weird going on with my lymphocytes and t-cells for a few years, I would have visible granulomas that would have shown up on my V/Q or CTPA scan. I assume that also rules out any scarring I might have got from inhaling vomit when I woke up choking a couple of months ago.

He thinks that if I do have PH, it could be idiopathic. I am really not happy with that suggestion. Couldn't it just as easily NOT be PH but because they can't pin down the cause, they might stick this label on it? I thought IPH was rare?

He said that my cough has nothing to do with my possible PH and suggested that I try to persevere with the reflux medicine to see if that helps. Because of the coughing/gagging at night, I thought I had gerd. A reduction in the amount of caffeine I drink has helped. Looking up the symptoms of silent reflux ticks an awful lot of the boxes for my symptoms. They suggest untreated LPR can sometimes affect lungs or breathing.

Has anyone been in a similar situation or has experience of something similar?

12 Replies

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  • Sorry but what is LPR? Robin

  • Laryngo-pharyngeal reflux (LPR). Sorry.

  • Thanks. Afraid I dont know much about PH, IPH or otherwise. I do know any type of reflux can lead to inhaled stomach acid which can cause lung damage so urge you to tackle that. Thank goodness you saw this chap today & that hes such a specialist in the field even though hes still feeling his way towards a firm diagnosis. Good luck for tues. Robin

  • It is always helpful to get an accurate diagnosis but if the doctors cannot find the definitive cause of your condition there is little point working about it. So long as the diagnosis is correct and you are receiving the correct treatment and appropriate follow ups, does the cause really matter so much? After all that is all "idiopathic" means.

    Regards Rib

  • I guess I don't want to be crammed into a diagnosis because it's the one that almost 'fits', if you know what I mean? Last weekend, I was injecting myself in the stomach with Fragmin because the docs were convinced I had massive embolisms...now next week I have to go through a catheterisation because some of my symptoms could be PH.

    And, yes, I think the cause absolutely matters, especially when it would go some way to proving whether this 'hunch' is any more correct than the last one. Telling me I might have a life limiting disease but they really aren't sure and, even if they were sure, they wouldn't know why, isn't much of a diagnosis?

  • I can well understand what you are saying. The Coronary Cath Lab is a familiar place to me. Will this be your first visit.

  • Yeah. First time for me. Mum has been before. I think that's what is playing on my mind. We have heart probs in our family and mum had a similar situation to me but to do with her heart. All her other tests came back clear and they only found out she needed a bypass once they did a coronary catheterisation. I guess finding out what is going on just takes as long as it takes, but it is rather stressful (as I am sure you know). This is now the 7th diagnosis I've had for my symptoms, each one more serious than the last and, so far, they've all been wrong. My nerves are frazzled! :)

  • Yes understand. As you say. I guess you have read my Profile.

    It is a combined pressure building up. Each test, which I guess for you, each test is a new scare. Not knowing what will happen. What can/ could go wrong during it. Then the stress of the results and half an idea of what they mean but never enough time to quiz the doctors, then by the time you have had a Google and scared yourself witless there is no chance of getting hold of the doctor to ask what is what.

    TBH I am glad that I never had the Internet.

    Cath Lab is a case of transfer to their bed and lay flat on your back with a tiny donut of cloth to sit the crown of your head in. Then a Doctor one side of you and a nurse holding your hand. I have had 3x and three different surgeons. All the same set up. The nurse tells you to just squeeze her hand if you want the surgeon to stop.

    As the surgeon looks across your sheet covered body they see a bank of 20" monitors. These are all hooked up to an xray machine.

    The surgeon tells you to move your arm or leg depending on the entry method. So they want you to turn your wrist Eg. So that it is in the right place at the right angle and that is it. You stay still and you feel a pressure like someone pushing on you to take your pulse but over pushing. Don't hurt though.

    You lay there the crew all talk and some talk to you. You lay still but you don't really feel anything. There are no nerves inside our blood vessels to feel any thing with. Within 15 min of going in there it is all done and you get rolled out to Recovery Ward for a kip, a cuppa, a biscuit. They keep you about an hour or so to make sure you feel ok. The surgeon comes for a chat to say how things went and the nurses tell you what you need to do and not for the next 24 hr.

    Rib

  • Thanks for the info. It seems a little less scary now. Much appreciated.

  • You are welcome. Just make future posts that you begin Community Only and that will padlock them. By posting Everyone it allows the post to be read over the entire WWW.

    Even more private just use PM or Private Message then only the two of you can read the text.

    Regards Rib

  • Hi. Both I and my brother have gastric reflux problems and boy does it hurt if we don't take our meds. I'm on Nexium ( generic Esomeprazole) 20 mg, one a day at breakfast time. If I forget I sure know about it within 24hours, then it takes a day to get back to normal. So if you have been given these, or similar pills find some way not to forget to take them. And it is for life. My brother felt better, stopped taking his, and wondered why, sometime later, he was getting awful chest/gastric pains. Doh! He finally remembered his pills and is OK now. But without them you can severely damage your gullet which is not protected against stomach acid and the thought of you being sick in your sleep terrifies me. So get that sorted out with your GP fast. It will also help to take the some of the pressure/worry off your heart. It won't stop the racing heart beat, I have that too, but will have knocked one problem off your list. I will be interested to hear the result of your exploratory test. It might help me in the future. My GP says he is perplexed as to why I have a racing heartbeat as nothing shows up on the ecg tests. But he won't let me have the machine that you wear for 48 hours to record it. I think it is rationed and there may be only one at the surgery. My flutters might only happen once a month for a day or two so how do you catch that? Good luck with your tests. Ask questions and read up as much as you can. If they know you have done your homework and can give them accurate details they are more likely to treat you seriously. Do ask what are the pros and cons of their suggestions. It shows you are trying to help them as well as yourself and you are not a muppet that can be walked over. Good luck!

  • I have PH but it is caused by my scleroderma. I go to the Royal Hallamshire hospital in Sheffield and have had the right heart catherterisation along with other tests and have found that it is borderline. It is amazing when I go to the hospital how many people have Idiopathic PH. PH in itself is uncommon with only around 6,000 to 8,000 people in the UK affected. There is nothing to be frightened of as the tests are explained and are not too bad. Good luck with your tests but there is still life after diagnosis.

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