"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.
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Replies to This Discussion
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Permalink Reply by Judy on
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Hi Richard,
I have PH due to COPD. If you get SOB when exercising or walking then you really should have access to some portable 02.
I'd do 2 things: I would request a full PFT test and I would buy an oximeter. And as long as you are considering purchasing an oximeter you might as well consider purchasing a recording oximeter so you can print out the results.
ConTec makes several recording and non-recording oximeters that are FDA approved and very reasonably priced. Thru the years w/COPD I've self-purchased (insurances won't pay for oximeters) a Nonin Onyx which is NOT a recording oximeter. Then an SP0 7500 recording oximeter w/its own software. And recently a ConTec CMS-50D+ (the 50D is NOT a recording oximeter, the + is the key to the recording model) and software. I've been very happy w/all three.
Frankly, I've not been particularly concerned about my PH. Nor have I bothered to investigate it closely. I can tell you it has been more than 3 years since I was Dx'd w/it and I am still alive and kicking.
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Permalink Reply by Mike on
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Richard wanted to thank everyone who responded to the discussion:
Hello Mike,
I just wanted to let you and everyone who responded to my discussion, know how very much I appreciated their comments. It feels good to be able to talk about it with someone. I don't think my Dr is telling me enough and I don't want to bum out my family, talking about it. So, you guys have given me somewhere to go.
God bless all of you.
Richard Morgan
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Permalink Reply by Mary Z on
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Thanks Richard, I really wish we knew more about the diagnosis and course of the disease. It's got to be a very scary diagnosis.
Mary Z.
Mike said:Richard wanted to thank everyone who responded to the discussion
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Permalink Reply by Richard Morgan on
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Thank you Judy, you are very encouraging. It is so good to hear from someone who actually has been dealing with it. I will eventually get my mind wrapped around this and quit obsessing about it. It's just that it is all so new to me right now and I 'm a little freaked out at the moment. Thanks again.
Judy said:Hi Richard,
I have PH due to COPD. If you get SOB when exercising or walking then you really should have access to some portable 02.
I'd do 2 things: I would request a full PFT test and I would buy an oximeter. And as long as you are considering purchasing an oximeter you might as well consider purchasing a recording oximeter so you can print out the results.
ConTec makes several recording and non-recording oximeters that are FDA approved and very reasonably priced. Thru the years w/COPD I've self-purchased (insurances won't pay for oximeters) a Nonin Onyx which is NOT a recording oximeter. Then an SP0 7500 recording oximeter w/its own software. And recently a ConTec CMS-50D+ (the 50D is NOT a recording oximeter, the + is the key to the recording model) and software. I've been very happy w/all three.
Frankly, I've not been particularly concerned about my PH. Nor have I bothered to investigate it closely. I can tell you it has been more than 3 years since I was Dx'd w/it and I am still alive and kicking.
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Well, I don't want to make you tooooo complacent about your PH. My understanding is that there are two forms, primary and secondary, and I think mine is secondary due to COPD, which I fail to see would be any more promising since there "ain't" no cure for COPD, just treatment until it or something else does you in.
If you can continue to educate yourself about PH and wouldn't mind sharing I would most likely benefit from the education as well.
By the way, I think you jinxed me!!! Chest xray just Dx'd some pee-new-moan-ya in the upper left lung and my doc scripted Avelox. W/in a half hour I was nauseous and upchucking. *sigh* He's calling in a script for something else. So we are the "respiratory infection twins" for the time being. *wicked grin*
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Personally, I don't see any difference, other than the fact, with one they know what caused it. With the other they don't. Big deal, you still got it, right? Sorry you feel so rotten. Respiratory infx really suck. Maybe if you and I could come up with a different way to intake oxygen, we could breathe normal again and be rich at the same time. LOL. Instead of being the respiratory infx twins, let's be Super Heroes! "Infection Girl and Flem Boy!" We really need some cool costumes, though.
Judy said:Well, I don't want to make you tooooo complacent about your PH. My understanding is that there are two forms, primary and secondary, and I think mine is secondary due to COPD, which I fail to see would be any more promising since there "ain't" no cure for COPD, just treatment until it or something else does you in.
If you can continue to educate yourself about PH and wouldn't mind sharing I would most likely benefit from the education as well.
By the way, I think you jinxed me!!! Chest xray just Dx'd some pee-new-moan-ya in the upper left lung and my doc scripted Avelox. W/in a half hour I was nauseous and upchucking. *sigh* He's calling in a script for something else. So we are the "respiratory infection twins" for the time being. *wicked grin*
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Ha! Just took the first dose of the Clarithromycin the doc called in about an hour ago and NO NAUSEA from it. I'm a HAPPY CAMPER!
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So glad you got some relief. In all my foolishness, I forgot to ask you if you take meds for your PH.
Judy said:Ha! Just took the first dose of the Clarithromycin the doc called in about an hour ago and NO NAUSEA from it. I'm a HAPPY CAMPER!
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Say what? No, no meds for PH for me. I didn't even know there was such a thing!
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Permalink Reply by sleepycarol on
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Sorry you are sick Judy.
Richard hope you keep us informed about this scary thing. My husband smokes -- chain smokes. I grew up with my dad and mom both smoking and mom smoked at least 2 packs a day (at the end of her life she chain smoked as well). I have respiratory problems, probably related to 2nd hand smoke. So this topic is of interest to me as well, although I have not been diagnosed with any thing but high blood pressure, asthma, and allergies mainly.
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There are several meds for PH. No cure, of course. Check out the website Pulmonary Hypertension Association. The meds are supposed to ease the symptoms. At what point in the disease you take them, I don't know. I just joined it so I am still learning things.
Judy said:Say what? No, no meds for PH for me. I didn't even know there was such a thing!
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Thanks, Richard. Does your doctor have you on any meds for the PH? I'll check out that PHA later today.
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