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

[Guest guest]

Diane/MB

I've seen a couple of recent very disturbing posts regarding PH. One

talked about diagnosing based on Echocardiogram with no Catheter done.

Well, some things are very standard and elementary. Echocardiogram

ultimately will not tell you with certainty. It will give you an

indication. With an indication you do a catheter, which from all who

have had it, isn't as bad as it sounds. Not saying I want one weekly.

But if my echo indicated the need, I'd sure want one. I'm much too

scared of PH to take chances.

Second, I read about not treating PH. Now, may be a question as to the

lead doctor, but it is treated. Two drugs that are approved and do work

on many patients in Tracleer (Bosentan) and Revatio (Sildenafil/Viagra).

Other treatments such as Flolan in severe cases which are very difficult

treatments but have benefit.

Where the desire to prescribe Cytoxan came from unless the person has

different conditions than described I don't know.

When you feel a need to question your doctor's comments, then trust your

gut that you need to see someone else. You know. You want to trust your

doctor. When you don't, there is generally a reason. Either they don't

communicate well, or don't make sense, or don't listen, or what they say

is contradictory to what you've read.

Unfortunately, there are still far more doctors who know virtually

nothing about this disease than there are knowledgeable ones. Many

pulmonologists, cardiologists, and rheumatologists don't know very much

and haven't treated many patients with it. You go into other medical

fields and its even worse.

>

> 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

>