Pulmonary Hypertension FAQs

[Nancy]

These are from the Pulmonary Hypertension Association website. They answer a lot of questions that people have.

http://www.phassociation.org/Learn/What-is-PH/index.asp
http://www.phassociation.org/Learn/FAQs/General_FAQ.asp

I found that the treatments they spoke about are slightly out of date. There are now several more that were not mentioned, Tracleer (pill), Remodulin (Cassette/subQ like an insulin cassette) and IV Remodulin (more permanent delivery and less painful), Flolan uses a port type delivery, and now Viagra has been shown to help some. In addition, there are several other drugs in trial.

Many are on oxygen and use a CPAP.

 

[Der Biermeister]

These are from the Pulmonary Hypertension Association website. They answer a lot of questions that people have.

http://www.phassociation.org/Learn/What-is-PH/index.asp
http://www.phassociation.org/Learn/FAQs/General_FAQ.asp

I found that the treatments they spoke about are slightly out of date. There are now several more that were not mentioned, Tracleer (pill), Remodulin (Cassette/subQ like an insulin cassette) and IV Remodulin (more permanent delivery and less painful), Flolan uses a port type delivery, and now Viagra has been shown to help some. In addition, there are several other drugs in trial.

Many are on oxygen and use a CPAP.

Thanks for the links Nancy -- I am studying them now
DB

 

[Der Biermeister]

These are from the Pulmonary Hypertension Association website. They answer a lot of questions that people have.

http://www.phassociation.org/Learn/What-is-PH/index.asp
http://www.phassociation.org/Learn/FAQs/General_FAQ.asp

I found that the treatments they spoke about are slightly out of date. There are now several more that were not mentioned, Tracleer (pill), Remodulin (Cassette/subQ like an insulin cassette) and IV Remodulin (more permanent delivery and less painful), Flolan uses a port type delivery, and now Viagra has been shown to help some. In addition, there are several other drugs in trial.

Many are on oxygen and use a CPAP.

Just before retiring last night, I stumbled across this paragraph in one of the links:

"A low-salt diet and judicious use of diuretics can be helpful in reducing volume overload in patients with PH and right ventricular failure. Because the right heart is dependent on preload, care should be taken to avoid excessive diuresis and further reduction of cardiac output".

On release from the hospital - my dosage for butamex was .5 mg. After my visit with my cardiologist, the dose was upped to 1 mg and (if needed), 2 mg per day. I've been doing 2 mg for about 3 weeks now and it is not doing anything to reduce my leg/ankle edema. But ... I think this is what is making me gradually get worse with my SOB. I am cutting back to .5 mg as of today and I see my doc in one week. My lungs are clear and I will keep a watch on that and on weight gain.
DB

 

[Nancy]

Keep very careful track of your fluid gain by weighing yourself each and every day in the AM, before eating or drinking anything and w/o clothing. And write this down in a small journal. This will give you a reference to consult when fluid starts to develop. I have a small notebook just for this purpose for Joe. We've been tracking his weight each day for several years. I write in it each day, his weight and temp. and also any med changes that happened that day, or other significant medical problems.

It's a simple thing, but you'd be surprised at how much information this simple act can generate. I can look back at the past and see what was done and the results of what were done.

His weight gain limit is 2 pounds overnight. Then he has to start additional diuretics. Once it gets to three pounds, it becomes difficult to get rid of. He has his labs checked out every two weeks. This includes a full metabolic panel and bloodwork.

Joe has many other problems you probably don't have. He is on massive amounts of diuretics, and has to be there, or he will get into serious trouble with CHF. The contributing factors for him are his own heart abnormalities, PH, CHF, congested liver (cardiac cirrhosis), hemolytic anemia and restrictive/constrictive heart disease.

People with PH have a more difficult time with fluid than ordinary CHF people.

Keeping to a diet extremely low in sodium has helped Joe to stay in this world. And without that, he would have even more serious fluid problems, and would end up n the hospital. His fluid restriction is about 8 cups per day.

Don't want to scare anyone, but if I can keep even one person from having severe issues, it would make me happy.

So far, we have been able to manage Joe's problems with strict adherence to his regimen. Don't know what the future holds. But for now it is working.

So do take care when changing your diuretics. And discuss that with your doctor. It's tricky stuff at best even w/o PH.

One more thing, fluid can accumulate in the stomach area as well, especially with right sided heart failure. This is ascites. If you carry additional weight there, it might be difficult to determine, but you could keep track of that by doing a girth measurement every day and writing that in your notebook. Ascites is tough stuff. It can congest the liver, spleen and cause lack of appetite. Joe has ascites when his CHF is out of control and it causes much trouble and is always reflected in his labs.

 

[Nancy]

Here is where the confusion arises

Here is where the confusion arises

Pulmonary Atery Pressures and PH:

Systolic Pressures:

Mild PH: 40-55 mm hg
Moderate: 55-75 mm hg
Severe: above 75 mm hg

*********************************

Mean Pulmonary Pressures:

Mild PH: 26-35 mm hg
Moderate: 36-45 mm hg
Severe: above 45 mm hg

There are two sets of numbers that are used in determining PH, the systolic, which is a single calculation, and the mean which uses a formula.

So it's important to know which set of numbers you are looking at when talking about how serious the PH is.

 

[Nancy]

Two more links that are very helpful re: PH

Two more links that are very helpful re: PH

http://www.phassociation.org/Learn/What-is-PH/whoclass.asp

Shows the various forms of PH, more than you ever imagine!


http://www.phassociation.org/Learn/What-is-PH/glossary.asp

Helpful glossary


http://www.aafp.org/afp/20010501/1789.html

Excellent overview

 

[Der Biermeister]

Pulmonary Atery Pressures and PH:

Systolic Pressures:

Mild PH: 40-55 mm hg
Moderate: 55-75 mm hg
Severe: above 75 mm hg

*********************************

Mean Pulmonary Pressures:

Mild PH: 26-35 mm hg
Moderate: 36-45 mm hg
Severe: above 45 mm hg

There are two sets of numbers that are used in determining PH, the systolic, which is a single calculation, and the mean which uses a formula.

So it's important to know which set of numbers you are looking at when talking about how serious the PH is.

Nancy -- on my echo report, they did not differentiate between systolic PA and mean PA. The report only said "moderate PH, PA = 40 mmHg. So, which would be the "standard" PA presented on an echo report?
Thanks
DB

 

[Nancy]

It doesn't say anything about the "mean" pressure, so I would say the first application applies, and in that case it looks like it's mild.

It is so confusing.

I urge you to hop on over to the PHA website.

There have been several posts there that might be of interest to you.

There is one about echo pressures, and another about mild PH.

The people there are very nice and very helpful. At this point they are on page one and page two.

http://www.phassociation.org/Message_Boards/main.asp?board=1

 

[Der Biermeister]

It doesn't say anything about the "mean" pressure, so I would say the first application applies, and in that case it looks like it's mild.

It is so confusing.

I urge you to hop on over to the PHA website.

There have been several posts there that might be of interest to you.

There is one about echo pressures, and another about mild PH.

The people there are very nice and very helpful. At this point they are on page one and page two.

http://www.phassociation.org/Message_Boards/main.asp?board=1

Thanks Nancy -- I will get over there this evening. At work now.
DB