"please keep me updated about oximeters "
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Sleep apnea and Pulmonary Hypertension
Is there anyone out there with Pulmonary Hypertension in our group? I have just been diagnosed last week with it after an echocardiogram. As I understand it normal arterial pressure in the lungs is 25 and below. I am at 45-55, in the moderate range. I really like my Dr, she is very intelligent and I have a lot of confidence in her. But I only trust doctors up to a point. I have asked her how concerned should I be about this disease, (my chicken way of asking will I probably die in 3 years like I read on the internet?) She just says to keep losing weight and use my CPAP every night. Coincidentally, I had developed a rather bad respiratory infection about the time of my diagnosis. I got it from walking our local golf course and getting caught in the rain, then coming into the a/c. At least I think that's how I got it. Currently on antibiotics. Sorry for going off on a tangent. Would like to hear from anyone dealing with the same problem and to those of you who do not use your machine regularly, you need to reconsider.
Views: 923
Replies to This Discussion
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Permalink Reply by Mike on
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Richard -- sorry you haven't gotten a response about this yet. it's a good question. let me try to find some people who might offer an answer.
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Permalink Reply by RL on
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Hi Richard,
From what I found on the web, the three year mortality prognosis is if you don't have treatment. If your condition is secondary pulmonary hypertension (secondary to your OSA), then successful treatment of your OSA could have a significant effect on improving your condition.
If you need help with issues with using your CPAP regularly, let us know. You can work on overall health improvements as well, including weight loss as recommended by your doctor and using your nutrition to support your overall health and heart health in particular. There are many resources for support, so seek out what you can do short term and long term and find what works for you. Definitely don't give up on yourself and do something you enjoy every day!
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Permalink Reply by Mary Z on
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What symptoms led up to you having an echocardiogram and finding out about the pulmonary HTN? I'm thinking perhaps more of us are affected than we know, but just don't show any symptoms that would lead to testing.
I just had a doctor blow off an abnormal ekg because "a computer reads it and we look at your overall health and any symptoms". As I was showing no symptoms of heart problems or pulmonary disease I went along with him for now, but plan to ask for a repeat with him reading it at my next checkup.
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Permalink Reply by Richard Morgan on
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Thanks Mike.
Mike said:Richard -- sorry you haven't gotten a response about this yet. it's a good question. let me try to find some people who might offer an answer.
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Thanks RL, I really don't know what else I can do about the OSA. I use my CPAP machine faithfully, even when napping. I began excercising (walking a couple of miles a day) a few months ago. As I understood it from the internet the treatment they were talking about was medication for the PH itself. But my Dr hasn't indicated I should be on any, as yet.
RL said:Hi Richard,
From what I found on the web, the three year mortality prognosis is if you don't have treatment. If your condition is secondary pulmonary hypertension (secondary to your OSA), then successful treatment of your OSA could have a significant effect on improving your condition.
If you need help with issues with using your CPAP regularly, let us know. You can work on overall health improvements as well, including weight loss as recommended by your doctor and using your nutrition to support your overall health and heart health in particular. There are many resources for support, so seek out what you can do short term and long term and find what works for you. Definitely don't give up on yourself and do something you enjoy every day!
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Hi Mary, what led up to my Dr ordering the echocardiogram was the fact I haven't been seeing a cardiologist. And since I had a heart attack about 5 years ago, she thought it would be a good idea. She was right. My heart looks good since it was never damaged from the heart attack. In, fact they couldn't tell I had a heart attack until my blood work came back and my enzymes were off. But at some of my visits to the Dr, she has noted a have a small leak in a valve and I have trouble breathing, not drastically, but I breathe in puffs sometimes and when I go walking sometimes I get so short winded my chest burns. After I stop for about 10 - 15 seconds it goes away and I can walk again. I have started resticting my excercising to inside the mall where it has a/c. The heat and humidity here in se Texas is pretty bad. But to tell you the truth Mary, about the only symptom is difficulty breathing. Not a whole lot and not all the time. I'm afraid that's about it. Thanks for asking, though.
Mary Z said:What symptoms led up to you having an echocardiogram and finding out about the pulmonary HTN? I'm thinking perhaps more of us are affected than we know, but just don't show any symptoms that would lead to testing.
I just had a doctor blow off an abnormal ekg because "a computer reads it and we look at your overall health and any symptoms". As I was showing no symptoms of heart problems or pulmonary disease I went along with him for now, but plan to ask for a repeat with him reading it at my next checkup.
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It's great that you are walking regularly for exercise. I like your idea of walking in the mall when the weather is too hot and humid, also good on days of high pollution or pollen if that bothers you. I think it is a good sign that your doctor doesn't think you need meds yet. You might want to have an at home - overnight oximetry test to check if you are taking in enough oxygen while on your CPAP. If you need extra oxygen, it can be fed through your CPAP hose. Sometimes people with lung issues like COPD use oxygen with their CPAP, so it might help you, if not now, maybe later. Your doctors will probably know about that, but it might not hurt to ask them. I am not a medical professional, so if this suggestion is way off, just ignore it.
Just curious, do you know if the same dietary guidelines apply for PH as for regular hypertension? - things like low sodium and plenty of water intake?
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Thanks, Richard.
Mary Z.
Richard Morgan said:Hi Mary, what led up to my Dr ordering the echocardiogram was the fact I haven't been seeing a cardiologist. And checkup.
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Hi RL, I agree that it is a good sign she's not talking about taking meds. It's just that since this isn't her specialty, and I am in the mid-range of this disease, I can't help but wonder, is there something I can do to slow or stop the progression along with the CPAP and weight loss. And no one has really sat down and talked about this to me in any detail. So, my imagination is working overtime, I guess. Thanks for the oximetry tip, I will see about that. To answer your question about the dietary guidelines, I don't really think it applies here since the arteries, blood vessels, etc in the lungs aren't clogged with plaque, they simply deteriorate.
RL said:It's great that you are walking regularly for exercise. I like your idea of walking in the mall when the weather is too hot and humid, also good on days of high pollution or pollen if that bothers you. I think it is a good sign that your doctor doesn't think you need meds yet. You might want to have an at home - overnight oximetry test to check if you are taking in enough oxygen while on your CPAP. If you need extra oxygen, it can be fed through your CPAP hose. Sometimes people with lung issues like COPD use oxygen with their CPAP, so it might help you, if not now, maybe later. Your doctors will probably know about that, but it might not hurt to ask them. I am not a medical professional, so if this suggestion is way off, just ignore it.
Just curious, do you know if the same dietary guidelines apply for PH as for regular hypertension? - things like low sodium and plenty of water intake?
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Permalink Reply by RockRpsgt on
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Richard, have you tried talking out your concerns with your current doc? Maybe they could help eleviate some of your concerns. They might even refer you to a specialist. I wish I could offer more advice. I have only dealt with this type of case a few times.
Richard Morgan said:Hi RL, I agree that it is a good sign she's not talking about taking meds. It's just that since this isn't her specialty, and I am in the mid-range of this disease, I can't help but wonder, is there something I can do to slow or stop the progression along with the CPAP and weight loss. And no one has really sat down and talked about this to me in any detail. So, my imagination is working overtime, I guess. Thanks for the oximetry tip, I will see about that. To answer your question about the dietary guidelines, I don't really think it applies here since the arteries, blood vessels, etc in the lungs aren't clogged with plaque, they simply deteriorate.
RL said:It's great that you are walking regularly for exercise. I like your idea of walking in the mall when the weather is too hot and humid, also good on days of high pollution or pollen if that bothers you. I think it is a good sign that your doctor doesn't think you need meds yet. You might want to have an at home - overnight oximetry test to check if you are taking in enough oxygen while on your CPAP. If you need extra oxygen, it can be fed through your CPAP hose. Sometimes people with lung issues like COPD use oxygen with their CPAP, so it might help you, if not now, maybe later. Your doctors will probably know about that, but it might not hurt to ask them. I am not a medical professional, so if this suggestion is way off, just ignore it.
Just curious, do you know if the same dietary guidelines apply for PH as for regular hypertension? - things like low sodium and plenty of water intake?
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Permalink Reply by sleepycarol on
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Be sure and follow any advice your doctor gives you.
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Hi Rocky, when I went to my Dr a little over a week ago, I of course asked how serious should I be taking this, and that's when she gave me the "use your cpap and continue to lose weight" spiel. Since that visit I have joined a site similiar to this one, but for people with PH. A couple of specialists in this field are here in Houston that are on their list. Since I have PPO insurance, I am going to try and refer myself.
Rock Hinkle said:Richard, have you tried talking out your concerns with your current doc? Maybe they could help eleviate some of your concerns. They might even refer you to a specialist. I wish I could offer more advice. I have only dealt with this type of case a few times.
Richard Morgan said:Hi RL, I agree that it is a good sign she's not talking about taking meds. It's just that since this isn't her specialty, and I am in the mid-range of this disease, I can't help but wonder, is there something I can do to slow or stop the progression along with the CPAP and weight loss. And no one has really sat down and talked about this to me in any detail. So, my imagination is working overtime, I guess. Thanks for the oximetry tip, I will see about that. To answer your question about the dietary guidelines, I don't really think it applies here since the arteries, blood vessels, etc in the lungs aren't clogged with plaque, they simply deteriorate.
RL said:It's great that you are walking regularly for exercise. I like your idea of walking in the mall when the weather is too hot and humid, also good on days of high pollution or pollen if that bothers you. I think it is a good sign that your doctor doesn't think you need meds yet. You might want to have an at home - overnight oximetry test to check if you are taking in enough oxygen while on your CPAP. If you need extra oxygen, it can be fed through your CPAP hose. Sometimes people with lung issues like COPD use oxygen with their CPAP, so it might help you, if not now, maybe later. Your doctors will probably know about that, but it might not hurt to ask them. I am not a medical professional, so if this suggestion is way off, just ignore it.
Just curious, do you know if the same dietary guidelines apply for PH as for regular hypertension? - things like low sodium and plenty of water intake?
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