Re: GOOD EVENING TO ALL............

[Guest guest]

Bruce,

When I had my heart cath I was asked to be involved in a trail for people with PF to detect PH in a non-invasive way. It involved a breathing test, I had to breath in and out deeply and quickly for about 20 breaths. What I was breathing into looked like a deflated soccer ball. They then were checking the results of the trial against the results of the heart-cath and it was looking very favourable to being able to accurately detect PH without any invasive procedures being needed. Although this was only in the trial period in July.> >> > 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> >> >> >> >> > ________________________________> > From: "DRice2@" DRice2@> > To: Breathe-Support > > Sent: Wednesday, November 12, 2008 6:40:11 PM> > Subject: 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> >>