Re: Due Diligence on Pulmonary Hypertension

[Guest guest]

Bruce,

I'm so glad that your tests are turning out so well. I know it is a relief to get the word of a pressure reading of only 18. That's really fabulous especially this far into your battle with lung disease. It is worth the trouble to be vigilant.

Back 20 years ago people diagnosed with PAH lived an average of only a couple of years after diagnosis. The situation is very different now. Diagnosed early PAH is treatable to a very large extent.

IT is a royal pain to find the doctors and do the testing that needs to be done. We most often have to educate ourselves and advocate for ourselves. It is very much a full time job but since I want to stay around here for a while yet, I'm going to keep doing it!

Again so happy you are getting such good results from your tests!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Tuesday, August 11, 2009 9:55:35 AMSubject: Due Diligence on Pulmonary Hypertension

I've often posted here my concern about any potential of pulmonaryhypertension as it is a very possible and very serious complication.More than anything else, we use our oxygen and maintain our sats to tryto prevent it. Unfortunately we have situations where we figure out hereon the forum someone likely has it but their doctors haven't beendiligent. Then it may be too late. Pulmonologists bring you in for CT'sand PFT's all the time and they tell you very little that you don'talready know from your sats and your use of oxygen. But you do needregular echocardiograms and that means to me if you've got PF you shouldhave them at least annually. Then at any sign of an issue every sixmonths. This also comes from the Pulmonary Hypertension Center at UTSW.Now, my most recent echocardiogram showed pulmonary pressure of 47, so Imade an appointment with the PH expert nearest me. There is a listing

onphassociation. org. First he did his own CT (every hospital wants theirown), his own echocardiogram, a six minute walk, PFT's, and ran dozensof labs. I also had a VQ to check for blood clotting/embolisms. Theechocardiogram there only indicated a pressure of 30 mmHg but it showeda severely dilated right ventricle, mild to moderately reduced rightventricular systolic function, mildly dilated right atrium, mild vitralregurgitation, mild tricuspid regurgitation, and milk pulmonic valvularregurgitation. The diltaed ventricle was a source of concern so I didhave a right heart catheter.For those who hear heart catheter and get scared this isn't the scaryone. Left catheters do require remaining flat for six hours, sometimesovernight stay. Right catheters are in your veins, not arteries. Theyare under local anesthesia only. They go in through your neck (sometimesgroin if your build makes neck a poor

choice). They put a needle inseveral times and places to deaden you and then proceed. I was able towatch on the same screen they were looking at. Now, the result, knownduring the course of the test, was that my pressure was only 18, wellwithin the normal range of 25. So definitively concluded no PH. As weknow, echocardiogram is used to indicate the need for a catheter, butthe only way to measure pressure accurately is with the catheter.As to the other things, cardiologist said some of that was often seen inPF'ers and PH doctor believes that they are actually not issues eitherbased on the catheter but just another example of the limitation of theechocardiogram. Regardless, I'm scheduled for a Cardiac MRI to be sure.As to echocardiograms, I'm now on a six month schedule and as long as itdoesn't top 50 or I don't experience other issues won't be concerned.However, top 50 or other issues and

another catheter.What if I had been found to have PH. Then treatment. See, it istreatable especially if found early enough. There is Tracleer, Revatio,Iloprost, and then for more serious Remodulin and even Flolan, althoughfrankly I would never do Flolan. But thats just personal.So,Lesson 1-Regular EchocardiogramsLesson 2-Issue on Echo get to a PH expert. There aren't that many andyou may need to travel. But, while regular cardiologists can do thecatheter for you, they are not qualified to treat PH if you have it.Lesson 3-Get Right Heart CatheterLesson 4-Echo can give you false alarms. Now I'd also say that if you'reexperiencing major symptoms of PH without your echo indicating, stillget to a PH expert.Lesson 5-Pulmonary Hypertension is treatable. The sooner caught thebetter.End of today's lecture and sharing of my experience. There were twopossible outcomes. One, I had

PH and would get treatment. The other, Ididn't have it. Either is far better than worrying about thepossibility.

[Guest guest]

Beth

Well, as to the doctors, they are all listed on phassociation.org. So

that simplifies that process. Many would be at IPF Centers of Excellence

too. But the listing even shows how much of each treatment they do.

Fortunate too that my other doctors knew the one at UTSW and recommended

him. Sad fact, Plano is no different than most cities. As my doctors

said firmly, there isn't anyone in Plano qualified to treat PH. Many

places have that with PF. Fortunately Plano doesn't as UTSW feeds many

pulmonologists here from their IPF center. Yes the testing has been a

major inconvenience, but nothing like PH might have been if I had it and

it wasn't detected.

Unfortunately, if I'd ever not had the drive to get checked out, we've

had members who have taught me the lesson of PH in a poor way. Joyce

(for those who are new, Joyce was a moderator on the board and member

from the start) and Lou (recently deceased as well for newbies).

I'm sure there have been others. But you see Joyce's struggle and then

Lou's not detected and if that doesn't make us all sit up and pay

attention, nothing will.

It's my crusade for myself to not let anything take me or make me worse

other than the IPF. I'm going to force it to run its full course.

>

> Bruce,

> I'm so glad that your tests are turning out so well. I know it is a

relief to get the word of a pressure reading of only 18. That's really

fabulous especially this far into your battle with lung disease. It is

worth the trouble to be vigilant.

> Back 20 years ago people diagnosed with PAH lived an average of only a

couple of years after diagnosis. The situation is very different now.

Diagnosed early PAH is treatable to a very large extent.

> IT is a royal pain to find the doctors and do the testing that needs

to be done. We most often have to educate ourselves and advocate for

ourselves. It is very much a full time job but since I want to stay

around here for a while yet, I'm going to keep doing it!

>

> Again so happy you are getting such good results from your tests!

>

>

> Beth

> Moderator

> Fibrotic NSIP 06/06 Dermatomyositis 11/08

>

>

>

>

> ________________________________

> From: Bruce Moreland brucemoreland@...

> To: Breathe-Support

> Sent: Tuesday, August 11, 2009 9:55:35 AM

> Subject: Due Diligence on Pulmonary Hypertension

>

>

> I've often posted here my concern about any potential of pulmonary

> hypertension as it is a very possible and very serious complication.

> More than anything else, we use our oxygen and maintain our sats to

try

> to prevent it. Unfortunately we have situations where we figure out

here

> on the forum someone likely has it but their doctors haven't been

> diligent. Then it may be too late. Pulmonologists bring you in for

CT's

> and PFT's all the time and they tell you very little that you don't

> already know from your sats and your use of oxygen. But you do need

> regular echocardiograms and that means to me if you've got PF you

should

> have them at least annually. Then at any sign of an issue every six

> months. This also comes from the Pulmonary Hypertension Center at

UTSW.

>

> Now, my most recent echocardiogram showed pulmonary pressure of 47, so

I

> made an appointment with the PH expert nearest me. There is a listing

on

> phassociation. org. First he did his own CT (every hospital wants

their

> own), his own echocardiogram, a six minute walk, PFT's, and ran dozens

> of labs. I also had a VQ to check for blood clotting/embolisms. The

> echocardiogram there only indicated a pressure of 30 mmHg but it

showed

> a severely dilated right ventricle, mild to moderately reduced right

> ventricular systolic function, mildly dilated right atrium, mild

vitral

> regurgitation, mild tricuspid regurgitation, and milk pulmonic

valvular

> regurgitation. The diltaed ventricle was a source of concern so I did

> have a right heart catheter.

>

> For those who hear heart catheter and get scared this isn't the scary

> one. Left catheters do require remaining flat for six hours, sometimes

> overnight stay. Right catheters are in your veins, not arteries. They

> are under local anesthesia only. They go in through your neck

(sometimes

> groin if your build makes neck a poor choice). They put a needle in

> several times and places to deaden you and then proceed. I was able to

> watch on the same screen they were looking at. Now, the result, known

> during the course of the test, was that my pressure was only 18, well

> within the normal range of 25. So definitively concluded no PH. As we

> know, echocardiogram is used to indicate the need for a catheter, but

> the only way to measure pressure accurately is with the catheter.

>

> As to the other things, cardiologist said some of that was often seen

in

> PF'ers and PH doctor believes that they are actually not issues either

> based on the catheter but just another example of the limitation of

the

> echocardiogram. Regardless, I'm scheduled for a Cardiac MRI to be

sure.

>

> As to echocardiograms, I'm now on a six month schedule and as long as

it

> doesn't top 50 or I don't experience other issues won't be concerned.

> However, top 50 or other issues and another catheter.

>

> What if I had been found to have PH. Then treatment. See, it is

> treatable especially if found early enough. There is Tracleer,

Revatio,

> Iloprost, and then for more serious Remodulin and even Flolan,

although

> frankly I would never do Flolan. But thats just personal.

>

> So,

>

> Lesson 1-Regular Echocardiograms

> Lesson 2-Issue on Echo get to a PH expert. There aren't that many and

> you may need to travel. But, while regular cardiologists can do the

> catheter for you, they are not qualified to treat PH if you have it.

> Lesson 3-Get Right Heart Catheter

> Lesson 4-Echo can give you false alarms. Now I'd also say that if

you're

> experiencing major symptoms of PH without your echo indicating, still

> get to a PH expert.

> Lesson 5-Pulmonary Hypertension is treatable. The sooner caught the

> better.

>

> End of today's lecture and sharing of my experience. There were two

> possible outcomes. One, I had PH and would get treatment. The other, I

> didn't have it. Either is far better than worrying about the

> possibility.

>

[Guest guest]

Bruce and Beth -

Thank you for the timely information on PH. I have been afraid that there was

some underlying damage to my heart either from the prednisone, the diabetes II

or the multitude of other drugs plus the PF (though my original doctor avoided

saying PF by using the ubiquitous Interstitial Lung Disease - ILD generic term).

I have had several echocardiograms, with and without stress. I am due for

another with the University of Utah Pulmonary Rehab (yet another study group

testing the effects of exercise on PF patitients quality of life), I finally

got that ball rolling by kinda pushing the point with the University and my

pulmo-dude. I appreciate all of the input on this site so I can weigh it

carefully. EVERYONE... please share, keeps us all on our toes and gives us a

chance to correct wrong perceptions and/or advise.

Stefani

ILD 2/2006, NSIP (cellular) 6/2009, Diabetes II 2/2006, Sleep Apnea 4/2009

>

> Bruce,

> I'm so glad that your tests are turning out so well. I know it is a relief to

get the word of a pressure reading of only 18. That's really fabulous especially

this far into your battle with lung disease. It is worth the trouble to

be vigilant.

> Back 20 years ago people diagnosed with PAH lived an average of only a couple

of years after diagnosis. The situation is very different now. Diagnosed early

PAH is treatable to a very large extent. 

> IT is a royal pain to find the doctors and do the testing that needs to be

done. We most often have to educate ourselves and advocate for ourselves. It is

very much a full time job but since I want to stay around here for a while yet,

I'm going to keep doing it!

>

> Again so happy you are getting such good results from your tests!

>

>  

> Beth

> Moderator

> Fibrotic NSIP 06/06 Dermatomyositis 11/08

>

>

>

>

> ________________________________

>

> To: Breathe-Support

> Sent: Tuesday, August 11, 2009 9:55:35 AM

> Subject: Due Diligence on Pulmonary Hypertension

>

>  

> I've often posted here my concern about any potential of pulmonary

> hypertension as it is a very possible and very serious complication.

> More than anything else, we use our oxygen and maintain our sats to try

> to prevent it. Unfortunately we have situations where we figure out here

> on the forum someone likely has it but their doctors haven't been

> diligent. Then it may be too late. Pulmonologists bring you in for CT's

> and PFT's all the time and they tell you very little that you don't

> already know from your sats and your use of oxygen. But you do need

> regular echocardiograms and that means to me if you've got PF you should

> have them at least annually. Then at any sign of an issue every six

> months. This also comes from the Pulmonary Hypertension Center at UTSW.

>

> Now, my most recent echocardiogram showed pulmonary pressure of 47, so I

> made an appointment with the PH expert nearest me. There is a listing on

> phassociation. org. First he did his own CT (every hospital wants their

> own), his own echocardiogram, a six minute walk, PFT's, and ran dozens

> of labs. I also had a VQ to check for blood clotting/embolisms. The

> echocardiogram there only indicated a pressure of 30 mmHg but it showed

> a severely dilated right ventricle, mild to moderately reduced right

> ventricular systolic function, mildly dilated right atrium, mild vitral

> regurgitation, mild tricuspid regurgitation, and milk pulmonic valvular

> regurgitation. The diltaed ventricle was a source of concern so I did

> have a right heart catheter.

>

> For those who hear heart catheter and get scared this isn't the scary

> one. Left catheters do require remaining flat for six hours, sometimes

> overnight stay. Right catheters are in your veins, not arteries. They

> are under local anesthesia only. They go in through your neck (sometimes

> groin if your build makes neck a poor choice). They put a needle in

> several times and places to deaden you and then proceed. I was able to

> watch on the same screen they were looking at. Now, the result, known

> during the course of the test, was that my pressure was only 18, well

> within the normal range of 25. So definitively concluded no PH. As we

> know, echocardiogram is used to indicate the need for a catheter, but

> the only way to measure pressure accurately is with the catheter.

>

> As to the other things, cardiologist said some of that was often seen in

> PF'ers and PH doctor believes that they are actually not issues either

> based on the catheter but just another example of the limitation of the

> echocardiogram. Regardless, I'm scheduled for a Cardiac MRI to be sure.

>

> As to echocardiograms, I'm now on a six month schedule and as long as it

> doesn't top 50 or I don't experience other issues won't be concerned.

> However, top 50 or other issues and another catheter.

>

> What if I had been found to have PH. Then treatment. See, it is

> treatable especially if found early enough. There is Tracleer, Revatio,

> Iloprost, and then for more serious Remodulin and even Flolan, although

> frankly I would never do Flolan. But thats just personal.

>

> So,

>

> Lesson 1-Regular Echocardiograms

> Lesson 2-Issue on Echo get to a PH expert. There aren't that many and

> you may need to travel. But, while regular cardiologists can do the

> catheter for you, they are not qualified to treat PH if you have it.

> Lesson 3-Get Right Heart Catheter

> Lesson 4-Echo can give you false alarms. Now I'd also say that if you're

> experiencing major symptoms of PH without your echo indicating, still

> get to a PH expert.

> Lesson 5-Pulmonary Hypertension is treatable. The sooner caught the

> better.

>

> End of today's lecture and sharing of my experience. There were two

> possible outcomes. One, I had PH and would get treatment. The other, I

> didn't have it. Either is far better than worrying about the

> possibility.

>

[Guest guest]

A great lesson, Bruce. Thank you. Jack79/IPF - UIP/dx06/05 Maine

To: Breathe-Support Sent: Tuesday, August 11, 2009 9:55:35 AMSubject: Due Diligence on Pulmonary Hypertension

I've often posted here my concern about any potential of pulmonaryhypertension as it is a very possible and very serious complication.More than anything else, we use our oxygen and maintain our sats to tryto prevent it. Unfortunately we have situations where we figure out hereon the forum someone likely has it but their doctors haven't beendiligent. Then it may be too late. Pulmonologists bring you in for CT'sand PFT's all the time and they tell you very little that you don'talready know from your sats and your use of oxygen. But you do needregular echocardiograms and that means to me if you've got PF you shouldhave them at least annually. Then at any sign of an issue every sixmonths. This also comes from the Pulmonary Hypertension Center at UTSW.Now, my most recent echocardiogram showed pulmonary pressure of 47, so Imade an appointment with the PH expert nearest me. There is a listing

onphassociation. org. First he did his own CT (every hospital wants theirown), his own echocardiogram, a six minute walk, PFT's, and ran dozensof labs. I also had a VQ to check for blood clotting/embolisms. Theechocardiogram there only indicated a pressure of 30 mmHg but it showeda severely dilated right ventricle, mild to moderately reduced rightventricular systolic function, mildly dilated right atrium, mild vitralregurgitation, mild tricuspid regurgitation, and milk pulmonic valvularregurgitation. The diltaed ventricle was a source of concern so I didhave a right heart catheter.For those who hear heart catheter and get scared this isn't the scaryone. Left catheters do require remaining flat for six hours, sometimesovernight stay. Right catheters are in your veins, not arteries. Theyare under local anesthesia only. They go in through your neck (sometimesgroin if your build makes neck a poor

choice). They put a needle inseveral times and places to deaden you and then proceed. I was able towatch on the same screen they were looking at. Now, the result, knownduring the course of the test, was that my pressure was only 18, wellwithin the normal range of 25. So definitively concluded no PH. As weknow, echocardiogram is used to indicate the need for a catheter, butthe only way to measure pressure accurately is with the catheter.As to the other things, cardiologist said some of that was often seen inPF'ers and PH doctor believes that they are actually not issues eitherbased on the catheter but just another example of the limitation of theechocardiogram. Regardless, I'm scheduled for a Cardiac MRI to be sure.As to echocardiograms, I'm now on a six month schedule and as long as itdoesn't top 50 or I don't experience other issues won't be concerned.However, top 50 or other issues and

another catheter.What if I had been found to have PH. Then treatment. See, it istreatable especially if found early enough. There is Tracleer, Revatio,Iloprost, and then for more serious Remodulin and even Flolan, althoughfrankly I would never do Flolan. But thats just personal.So,Lesson 1-Regular EchocardiogramsLesson 2-Issue on Echo get to a PH expert. There aren't that many andyou may need to travel.. But, while regular cardiologists can do thecatheter for you, they are not qualified to treat PH if you have it.Lesson 3-Get Right Heart CatheterLesson 4-Echo can give you false alarms. Now I'd also say that if you'reexperiencing major symptoms of PH without your echo indicating, stillget to a PH expert.Lesson 5-Pulmonary Hypertension is treatable. The sooner caught thebetter.End of today's lecture and sharing of my experience. There were twopossible outcomes. One, I had

PH and would get treatment. The other, Ididn't have it. Either is far better than worrying about thepossibility.