Pam's Story

MY NAME IS PAM, I WAS DIAGNOSED IN 2001 WITH PRIMARY PULMONARY HYPERTESION WHICH IS LOW BLOOD PRESSURES IN THE LUNGS NOT HIGH. I HAVE TO TAKE VENTAVIS ,BEFORE THAT I WAS ON REMODULIN SUB Q.AND I AM STILL ON TRACLEER. I SEE THE LUNG DR. ABOUT EVERY MONTH TO THREE MONTHS. MY HEART DR. UNLESS I HAVE PROBLEMS I SEE HIM EVERY SIX MONTHS. MY HEART NUMBER IS 90 AND I HAVE WENT FROM 140 IN MY PULMONARY WAVES TO THE 70 OR 100. SO THE PRAYERS AND THE MEDICINES I TAKE HAVE HELPED ME TREMENDOUSLY.THERE IS HOPE FOR ALL WHO HAVE DISEASE ESPECIALLY LUNG DISEASE LIKE OURS. I GO TO THE PAH MEETING AT LEXINGTON HOSPITAL IN WEST COLUMBIA WHEN THEY HAVE THEM. I AM TRYING TO PLAN TO GO TO SPARANTBURG ON NOV 8.I WEAR OXYGEN AT NIGHT BECAUSE MY OXYGEN LEVELS GET DOWN TO 75 AND THAT MAKES THE HEART PUMP EVEN HARDER NOT GETTING THE OXYGEN. I WANT TO WRITE MY CONGRESSMEN AND OTHER REPRESENTATIVES BUT I JUST DON’T KNOW WHAT TO SAY. HOW TO SHORTEN THE DISEASE I HAVE WITH ALL THE TEST AND MEDICINE AND DOCTORS I HAVE SEEN OVE R THE YEARS. NOW FOUND OUT I HAVE FIBROMYALYGIA.WHEN I WAS ON REMODULIN IT CAUSED RHUMETHYROID ARTHRITIS THEN I GOT OFF OF THE REMOD. AND NOW I HAVE FIBRO. I DON’T UNDERSTAND WHAT IS GOING ON WITH MY BODY. I HAVE CHF FROM THE PPH WHICH MEANS THE RIGHT SIDE OF MY HEART IS SWOLLEN AND I GET FLUID BUILD UP SO ON MEDICINE FOR THAT TWO DIFFERENT FLUID PILLS. WELL ,THAT’S ALL I FEEL UP TO WRITING.
THANKS,

PAM