link to article on PH

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E

ericaj

Hi harrybaby and all others dealing with pulmonary hypertension.. I was reading some articles on the website of my congenital cardiologists clinic and came across this one on PH .. I don't know that it will be of any help but I hope atleast it provides some information or usefullness for you.

the link is www.chw.org/display/ppf/docid/5389/router.asp

if that deosnt work the clinic hospital website is CHW.org under professional and articles.. Do a little bit of searching on the website if you are still unsure
I don't have PH but it did seem very useful.

Take care,

Erica
 
Good article, however the date on it is 2002. Research is going fast for this disease, so 2002 is now outdated.

The use of Tracleer, which is a pill taken twice a day is now used with increasing frequency.

It takes several months to work, and after a year's time the patients feel much better. However it can cause liver damage, so liver function must be checked each month.

This is the medication that Joe takes. It has helped him tremendously. He started to feel a little better within a couple of months, now, after more than a year and a half, he feels much better. He was close to death before being put on Tracleer.

Tracleer has big advantages over Flolan which requires a central line and chilled pump and all that is required of that, plus the half life of Flolan is measured in minutes, so if anything happens to the pump or the line clogs, or falls out, the person is in dire straits, and it becomes an emergency situation.

Remodulin, the other infused type drug does not require a central line, but is injected into the skin with a pump in the belly area. The site pain is very difficult with this drug.

Both Flolan and Remodulin work well, especially with people who have very severe PH, in spite of the drawbacks. But Tracleer, if one can take it, has many pros associated with it.

There are many other drugs in clinical trial as we speak which have many proposed advantages.

So research into the area of PH continues. And it is my bet that as more doctors become aware of this disease, more people will get a proper diagnosis and will be helped with these new treatments, improving their symptoms and even prolonging life.

For all with a PH diagnosis. You will have to be an advocate for yourself. There is still a "head in the sand" atitude re: this disease, within the medical community. Once you have this diagnosis, please go to a PH "specialist", not just a cardiologist or pulmonologist who may only see one or two cases in their lifetime. This is a "rare" disease. A PH specialist is the one who can get you the necessary workups and the necessary treatments. Most people have to travel to their specialists, since they are few and far between, and the wait can be months.
 
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