primary pulmonary hypertension diagnosis

[Judie38]

I have been diagnosed with primary pulmonary hypertension as told to me by a lung surgeon.  In his letter to my local doctor, he states:  "She has a pulmonary vascular limit to exercise.  This is due to a combination of intrinsic pulmonary vascular disease and heart failure with preserved ejction fraction leading to cor pulmonale.  Treatment options are limited and reviewed. Possibilities include increasing antihypertensive agents, +/- beta blocker; pulmonary vasodilator therapy which might worsen gas exchange, create an addtional cardiac load, and are unproven in this setting."  At our meeting I asked if he "couldn't just ream out the pulmonary arteries."  He said if he did that it is possible that he" could flood my heart and kill me"  leading me to believe that is the reason he doesn't want to use vasodialators as is being done with the people diagnosed with this.  Should he have referred me to a pulmonary hypertension clinic or does it appear that he is implying I am too far advanced for any type of vasodilator treatment..
I have had all the diagnostic tests and CAT scans as well as pulmonary tests, right heart catherization and Level III CPET stress test.

[Judie38]

This week I contacted a pulmonologist at the same hospital where my test were done, but he is a PH clinic head.  He will check my records next week and someone will be in touch.  Thanks for your comments.

[Judie38]

My mean pulmonary artery pressure is 34.  It's my understanding it is PAH. But, the doctor feels it would be too risky to use pulmonary vasodilator therapy. I need to talk with one of the pulmonologists and make it clearer for me.
I'm not scheduled to see either the local pulmonologist or the pulmonologist lung surgeon until October.  Thanks.

[loree147]

Were you diagnosed with pulmonary venous hypertension or pulmonary arterial hypertension? There is a difference in treatment. Primary pulmonary hypertension is a term that is no longer used. It seems to me you should be going to a PH clinic.

[hava]

This pranayam will improve your lung and heart function and you will feel good in days. Do it and let me know how you feel after 21 days, and continue for rest of life to stay healthy.Your medical team may ask, what you are doing, when they see the future test result.

Build up your timing gradually.If you feel tired or dizzy, stop and resume after one minute.

Anulom Vilom pranayam –
Close your right nostril with thumb and deep breath-in through left nostril  
then – close left nostril with two fingers and breath-out through right nostril  
then -keeping the left nostril closed  deep breath-in through right nostril
then - close your right nostril with thumb and breath-out through left nostril.
This is one cycle of anulom vilom.
Repeat this cycle for 20 to 30  minutes twice a day.
You can do this before breakfast/lunch/dinner or before bedtime or in bed.Remember to take deep long breaths into the lungs and keep eyes closed.You can do this while sitting on floor or chair or lying in bed.

Bhramri Pranayam -Close eyes. Close ears with thumb, index finger on forehead, and rest three fingers on base of nose touching eyes. Breathe in through nose. And now breathe out through nose while humming like a bee.
Repeat this  5 to 21 times.
August 4 ,2011