GOOD EVENING TO ALL............

[Guest guest]

HELLO EVERYONE-I HOPE YOU ALL HAD GOOD DAYS. VANESSA- I'M SORRY I DIDN'T KNOW

YOUR SISTER BUT I'M SURE SHE WAS A SPECIAL PERSON AND HOPE YOU WILL HAVE GOOD

MEMORIES OF HER FOREVER IN YOUR HEART!

PATTI AND MARY BETH- I HAVE BEEN TO A CARDIOLOGIST AND IN NY IT SEEMS THEY DON'T

TREAT PULMONARY HYPERT. YOU HAVE TO GO TO A PULMONOLOGIST. I JUST CAN'T SEEM TO

GET MY POINT ACROSS TO HIM ON WHY THEY AREN'T TREATING THE PH IF MY LUNGS ARE

STABLE LEAVE THEM ALONE. WHY FIX WHAT ISN'T BROKE AT THIS POINT WITH ALL THE MED

SIDE EFFECTS...........MY CASE HAS BEEN MISMANAGED FROM THE BEGINNING BUT

NOTHING MUCH WAS DOCUMENTED. DOCTORS AROUND HERE AREN'T AS SMART-SHOULD'VE STUCK

WITH GOING BACK TO PITTSBURGH-BUT REALLY CAN'T MAKE THAT TRIP NOW. WITH THIS

MUSCLE DISEASE THE CYTOXAN DID A NUMBER ON ME AND STARTED WORKING BACKWARDS. I

CAN'T EVEN TRAVEL FOR A HOUR WITHOUT SWELLING UP LIKE A BALLOON! I AM JUST AT MY

WITS END AND DON'T KNOW WHAT ELSE TO DO. I DID NOT HAVE A CARDIAC CATH-THEY ARE

AFRAID TO DO ONE BECAUSE I ALREADY HAVE AN ARRYTHMIA TO BE FIXED BUT WITH THE

MUSCLE DISEASE CANNOT LIE STILL FOR 6-8 HRS. I THINK A CALL TO PITTSBURGH IS IN

ORDER TO CONFER MAYBE. THANKS FOR ALL YOUR SUGGESTIONS AND I WILL KEEP TRYING!

WE ALL HAVE TO MAKE THESE DOCTORS BELIEVE WHAT WE ARE SAYING TOO! SLEEP WELL

ALL! GN-DIANE

[Guest guest]

Diane,

I'm very concerned about you. I think you're idea of calling your doctors in Pittsburgh is a good one. It does not sound to me as though your case is being managed well at all. And trust me when I tell you that in NY they do treat pulmonary hypertension. I am a life long New Yorker who only moved to NC a year ago. I think the doctors in your area of NY may just not be well equipped to deal with a complex case such as yours.

Please keep us posted and I for one encourage you to call your doctors in Pittsburgh. You are in my prayers!!

PS: It's easier for everyone to read your posts if you don't type in ALL CAPS! LOL Thanks!

Beth-Moderator

Fibrotic NSIP 06/06 UCTD 06/08

"Take chances, make mistakes and get messy!"

Miss Frizzle

To: Breathe-Support Sent: Wednesday, November 12, 2008 6:40:11 PMSubject: GOOD EVENING TO ALL............

HELLO EVERYONE-I HOPE YOU ALL HAD GOOD DAYS. VANESSA- I'M SORRY I DIDN'T KNOW YOUR SISTER BUT I'M SURE SHE WAS A SPECIAL PERSON AND HOPE YOU WILL HAVE GOOD MEMORIES OF HER FOREVER IN YOUR HEART!PATTI AND MARY BETH- I HAVE BEEN TO A CARDIOLOGIST AND IN NY IT SEEMS THEY DON'T TREAT PULMONARY HYPERT. YOU HAVE TO GO TO A PULMONOLOGIST. I JUST CAN'T SEEM TO GET MY POINT ACROSS TO HIM ON WHY THEY AREN'T TREATING THE PH IF MY LUNGS ARE STABLE LEAVE THEM ALONE. WHY FIX WHAT ISN'T BROKE AT THIS POINT WITH ALL THE MED SIDE EFFECTS..... ......MY CASE HAS BEEN MISMANAGED FROM THE BEGINNING BUT NOTHING MUCH WAS DOCUMENTED. DOCTORS AROUND HERE AREN'T AS SMART-SHOULD' VE STUCK WITH GOING BACK TO PITTSBURGH-BUT REALLY CAN'T MAKE THAT TRIP NOW. WITH THIS MUSCLE DISEASE THE CYTOXAN DID A NUMBER ON ME AND STARTED WORKING BACKWARDS. I CAN'T EVEN TRAVEL FOR A HOUR WITHOUT SWELLING UP LIKE A BALLOON! I AM JUST AT MY WITS END AND DON'T KNOW WHAT ELSE TO DO. I DID

NOT HAVE A CARDIAC CATH-THEY ARE AFRAID TO DO ONE BECAUSE I ALREADY HAVE AN ARRYTHMIA TO BE FIXED BUT WITH THE MUSCLE DISEASE CANNOT LIE STILL FOR 6-8 HRS. I THINK A CALL TO PITTSBURGH IS IN ORDER TO CONFER MAYBE. THANKS FOR ALL YOUR SUGGESTIONS AND I WILL KEEP TRYING! WE ALL HAVE TO MAKE THESE DOCTORS BELIEVE WHAT WE ARE SAYING TOO! SLEEP WELL ALL! GN-DIANE