Pulmonary Hypertenion

[WayneGM]

A friend of ours 15 year old son feinted at school one day so he went for tests. He has been diagnosed with Pulmonary Hypertension. They say there is no cure and he may only have 5 years or so to live. Anyone heard of this, and any insights to share. Needless to say the family is beside themselves.

 

[Harrybaby666]

I have it Wayne.....

I have it Wayne.....

There are two types Primary and Secondary. The doctor will have to tell your friends whether it's Primary which means that it's not caused by something, or Secondary, which I have, which means that it's caused by another problem, in my case, Sleep Apnea.....the best place to send you for information is to http://www.phassociation.org, as they are a huge source of information. Hope this helps you and your friend's family. I am wishing them nothing but the best and prayers are going out ASAP. Take Care, Harrybaby

 

[Nancy]

http://www.phassociation.org/

That is a link to the Pulmonary Hypertension Assoc. website. They should go there and go to the forums there and ask any questions they have.

Joe had PH for many years. There are now some good treatments which can help people live very well with this disease.

What they have been told is VERY OLD news. There are people on that website that have lived for 20 years and more with PH.

It is a nasty disease to be sure, and never used to have any treatments, but all that has changed, and better treatments are coming out each year.

They should get a specialist for their son. The specialists are few and far between, but they are the only ones who understand the ins and outs of this disease. Others THINK they know about it, but most do not know enough to help someone with PH.

 

[Christina L]

Bless that young man's heart AND

Bless that young man's heart AND

his family. So very sad.

However, listen to Nancy. She knows of what she speaks!! Tell these peoiple to find a good specialist of PH who is hopeful and will not tell this boy that he has five years to live. Self-fulfilling prophecy is a REAL phenomenon.

Anyway...I was very sorry to read this. May God give this boy and his family great strength for the years ahead.

Christina L

 

[alicia]

I have a slight case of secondary pulmonary hypertension also. My cardiologist doesnt seem to dwell on it nor does he seem overly concerned. But with all my other cardiac problems, whats one more? Best of luck to you.

Alicia

 

[WayneGM]

Thanks for the information and good wishes. I'll pass them along to the family.

I believe their son has the primary type as they don't know the cause. All they know is that from the tests the doctor described his lungs as "looking like prunes". That website will be very helpful as it at least describes some possible treatments and they can check the message board to get some first hand information. They can use all the hopefull information they can get as right now as it's been pretty depressing for them to say the least. They have checked into PH specialists and apparently there are only 4 in Canada, but at least one is in Toronto which is closest to here.

Your information and good wishes are greatly appreciated.