Posted by Chris M. on 7/21/2008, 11:35 pm, in reply to "Cor Pulmonale and secondary PH"
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John, I was diagnosed in the hospital by pneumonia. My Pulmonologist was a schoolmate of Dr. Cooper and tends to tell truths.
"You have mild to moderate sec. PH" and then went on to tell me to never eat salt, avoid BP meds and never go on any without being under hospital care.
It was the explanation for why I had edema in my right foot and ankle, which still happens daily. He then told me not to exhaust myself with exercise, but to build up to decent conditioning keeping the heart rate below 120bpm.
I was also told that as it was a moveable condition, this mild to moderate, the exercise would be critical to circulation and I needed a diuretic, furosemide and KlorCon daily.
I was then told (critical care/Pulmonologist specialist, and by two Cardiologists since)there was litle point to further diagnosis other than echocardiogram as the heat is a muscle and this condition changes, sometimes several times a day.
Mind you ,John, we are all different, but I started with this in 1999, and it was predicted then in the literature and local library books, that I had a 5% chance to live one year. Then I had an illegal LVRS, which my Pulmo suggested was life saving to get the garbage out of the way so the heart could function better. (Illegal due to Medicare's moritorium on LVRS, so my Cardiothoracic surgeon did a "wedge resection" open chest, wink, wink)
I sidestepped on improved FEV1 but breathing and exercise was easier after surgery.
I still had sec. PH, COPD still very severe, still exercise, and get around fine, 9yrs later.
I was told that other testing was more risk than necessary, and so long as I didnt have more problems, "carry on...". Oh yes, and expect mild pain on exercise or exertion.
Still have mild to moderate sec. PH, it's a moveable thing. I do get mild pain on exertion, and still have varying amounts of edema in the right foot, and yes, some arrythmia but only if I push too far.(groceries come to mind)
Mild and moderate is their definition for the mm opening of the artery. It's variable, by your body, for your needs, daily changing, maybe hourly or by heart rate. I have been reminded periodically about hearts are muscles...they too need exercise.
Yeah, I know Cor Pulmonale is a final outcome for sec. PH., but I'm not going to hunt for it, define it, or push it: I pace, I exercise, I live....5% chance to live 1 yr? Nah....I may outlive all these Docs. I am avoiding blood thinners, heart meds, as I suspect my Pulmo was right, to avoid such until forced to....and then in a hospital.
I suspect that having the diagnosis on your charts is their way to protect their butts legally, and is usually followed by a question mark...It makes it a no no for trials and some surgeries, as sort of an alert. Then they can say, "I told you so".
I can say that many meds are counterproductive to our breathing, and unless you are having specific problems, I sure drag my feet at starting any that are not absolutely necessary. I run high normal BP, and some arrythmias but am not using bp or thinners other than a 325mg aspirin each morning. Pacing is vital to avoid arrythmias.
Hope it helps.
I worry more about dying in an auto accident with my husbands driving!
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