Exercise induced pulmonary hypertension ????

[Guest guest]

For the last month the cardio has been playing with my beta blockers - trying to

get me off of them at the request of my pulmo. In the process the only thing

that was proven was exactly why I was on it and that they can make me more

crazy. In the middle of it all my bipolar daughter has a crisis and is now in

the behavioral whatever ward. I always knew it as the psych unit but that gives

my age away and shows that I am no longer politically correct.

However, while they were messing with my meds, my primary saw for the first time

why I was taking beta blockers. I came to this group on them and no one ever

questioned why. Except for the pulmo who said that maybe they were causing

problems with the asthma. I have fought going off of them for a year because I

knew what it was like without them and did not want that added to it all.

They did the echo looking for PH and found no signs of it. However when they

figured out for themselves what I have been saying about my bp and heartrate

being perfectly ok when I am still and then jumping as soon as even roll over,

they are now saying that this is mostlikely going on with my pulmonary pressure

as well.

They are giving me a month to restabilize my heart on the old doses of beta

blocker and then working from the principal that I have PH that is induced thru

any exercise just like the pulse and bp. Everything has told them that I do

have PH except for the tests which are all done when you are lying still.

This entire thing has been a totally different twist on shop till you drop.

Unfortunately I do not get 1/3 of what I went for in the grocery store before I

drop and now they finally feel that they know what is really going on and they

could not find.

Anyone else have exercise induced PH and if so how are they treating it and you

dealing with it.

Thanks Jean

[Guest guest]

Jean

sorry to hear about your daughter

that is interesting what you said about exercise induced ph

my tests have been done lying down

even the test for acid reflux was done lying done

wonder if there is a difference with those tests like there is when using the oximeter to check the SAT: at rest vs activity

sometimes we just know something is not right, but finding out what it is, can be very difficult

Pink Joyce IPF 3/06 Pennsylvania

Donate Life Listed 1/09

www.transplantfund.org---

Subject: Exercise induced pulmonary hypertension ????To: Breathe-Support Date: Friday, March 13, 2009, 6:06 AM

For the last month the cardio has been playing with my beta blockers - trying to get me off of them at the request of my pulmo. In the process the only thing that was proven was exactly why I was on it and that they can make me more crazy. In the middle of it all my bipolar daughter has a crisis and is now in the behavioral whatever ward. I always knew it as the psych unit but that gives my age away and shows that I am no longer politically correct.However, while they were messing with my meds, my primary saw for the first time why I was taking beta blockers. I came to this group on them and no one ever questioned why. Except for the pulmo who said that maybe they were causing problems with the asthma. I have fought going off of them for a year because I knew what it was like without them and did not want that added to it all. They did the echo looking for PH and found no signs of it. However when they figured out for themselves what

I have been saying about my bp and heartrate being perfectly ok when I am still and then jumping as soon as even roll over, they are now saying that this is mostlikely going on with my pulmonary pressure as well. They are giving me a month to restabilize my heart on the old doses of beta blocker and then working from the principal that I have PH that is induced thru any exercise just like the pulse and bp. Everything has told them that I do have PH except for the tests which are all done when you are lying still. This entire thing has been a totally different twist on shop till you drop. Unfortunately I do not get 1/3 of what I went for in the grocery store before I drop and now they finally feel that they know what is really going on and they could not find.Anyone else have exercise induced PH and if so how are they treating it and you dealing with it.Thanks Jean

[Guest guest]

Jean

sorry to hear about your daughter

that is interesting what you said about exercise induced ph

my tests have been done lying down

even the test for acid reflux was done lying done

wonder if there is a difference with those tests like there is when using the oximeter to check the SAT: at rest vs activity

sometimes we just know something is not right, but finding out what it is, can be very difficult

Pink Joyce IPF 3/06 Pennsylvania

Donate Life Listed 1/09

www.transplantfund.org---

Subject: Exercise induced pulmonary hypertension ????To: Breathe-Support Date: Friday, March 13, 2009, 6:06 AM

For the last month the cardio has been playing with my beta blockers - trying to get me off of them at the request of my pulmo. In the process the only thing that was proven was exactly why I was on it and that they can make me more crazy. In the middle of it all my bipolar daughter has a crisis and is now in the behavioral whatever ward. I always knew it as the psych unit but that gives my age away and shows that I am no longer politically correct.However, while they were messing with my meds, my primary saw for the first time why I was taking beta blockers. I came to this group on them and no one ever questioned why. Except for the pulmo who said that maybe they were causing problems with the asthma. I have fought going off of them for a year because I knew what it was like without them and did not want that added to it all. They did the echo looking for PH and found no signs of it. However when they figured out for themselves what

I have been saying about my bp and heartrate being perfectly ok when I am still and then jumping as soon as even roll over, they are now saying that this is mostlikely going on with my pulmonary pressure as well. They are giving me a month to restabilize my heart on the old doses of beta blocker and then working from the principal that I have PH that is induced thru any exercise just like the pulse and bp. Everything has told them that I do have PH except for the tests which are all done when you are lying still. This entire thing has been a totally different twist on shop till you drop. Unfortunately I do not get 1/3 of what I went for in the grocery store before I drop and now they finally feel that they know what is really going on and they could not find.Anyone else have exercise induced PH and if so how are they treating it and you dealing with it.Thanks Jean

[Guest guest]

When they cut the beta blocker in half and added the diltiazen not only did my bp and pulse go crazy but my breathing got real bad. Not any of these while I was resting, only when I moved. I put the pulse ox on and checked it while being perfectly still then rolled over on my side and my pulse went up by over 20 from that simple movement.

Some of these things are hard to find since they do the tests and still it shows nothing. exercise induced PH it not as rare as you think but it is not diagnosed as often as it is there.

From: jeane7160 <jeane7160 (AT) yahoo (DOT) com>Subject: Exercise induced pulmonary hypertension ????To: Breathe-Support@ yahoogroups. comDate: Friday, March 13, 2009, 6:06 AM

For the last month the cardio has been playing with my beta blockers - trying to get me off of them at the request of my pulmo. In the process the only thing that was proven was exactly why I was on it and that they can make me more crazy. In the middle of it all my bipolar daughter has a crisis and is now in the behavioral whatever ward. I always knew it as the psych unit but that gives my age away and shows that I am no longer politically correct.However, while they were messing with my meds, my primary saw for the first time why I was taking beta blockers. I came to this group on them and no one ever questioned why. Except for the pulmo who said that maybe they were causing problems with the asthma. I have fought going off of them for a year because I knew what it was like without them and did not want that added to it all. They did the echo looking for PH and found no signs of it. However when they figured out for themselves what

I have been saying about my bp and heartrate being perfectly ok when I am still and then jumping as soon as even roll over, they are now saying that this is mostlikely going on with my pulmonary pressure as well. They are giving me a month to restabilize my heart on the old doses of beta blocker and then working from the principal that I have PH that is induced thru any exercise just like the pulse and bp. Everything has told them that I do have PH except for the tests which are all done when you are lying still. This entire thing has been a totally different twist on shop till you drop. Unfortunately I do not get 1/3 of what I went for in the grocery store before I drop and now they finally feel that they know what is really going on and they could not find.Anyone else have exercise induced PH and if so how are they treating it and you dealing with it.Thanks

Jean