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Ph ranges!


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#1 summer

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Posted 05 December 2008 - 10:34 PM

Does anyone know approximately what the normal or abnormal ranges are for you to be diagnosed with Pulmonary Hypertension?

I had a rather extensive Echo done a few days ago it took the technician nearly 90 minutes to do it. It has been a debate now with my doctors whether I have had PH for nearly 1 1/2 years. My cardiologist refuses to do a right heart catheterization (RHC) unless it is extremely necessary. The technician at the hospital did tell me that she managed to get the PA pressure this time but wouldn't tell me what it was. I am due to see my cardiologist on the 23rd of December, so I am hoping that I won't get bad news.

Many thanks
Celia

#2 Maddy07

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Posted 08 December 2008 - 10:03 AM

Anything over 25 (at rest) on an echo is enough to warrant a right heart catheterization (RHC). Anyone who tells you differently is not up to date on pulmonary hypertension (PH) and Sclero!

My echo estimated 35. My RHC showed a pressure of 87. You MUST and I cannot emphasize this enough, you must get to a PH specialist. If your cardiologist or pulmonologist is weary of doing a RHC or being proactive with this, please ask them to refer you to an PH specialist. Some even (like mine) who specialize in PH and Autoimmune disorders together!

Treating PH early and aggressively can make all the difference in how it progresses and your quality of life. I urge you to seek a referral to someone who knows what they're doing. Cardios and Pulms of course have good intentions and might have seen a few cases and feel they have a handle on it. However there are endless stories of people with PH who didn't receive adequate care for months/years.

I have had CREST since '96 and was diagnosis with PH in October of last year. I was fortunate and had doctors who while they were not specialists, knew enough to do the RHC and then start treatment. I urge you to do the same..PH is fatal (quickly) if it goes untreated and if it's mild or just starting, you can truly help yourself by treating it NOW not later. :)
Maddy
38 yr old mommy to 2 boys
Raynaud's, CREST diagnosed '96
Pulmonary Hypertension diagnosed Oct '07
GERD, Inefficient Esophageal Motility diagnosed Jan '09

#3 summer

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Posted 08 December 2008 - 05:55 PM

Unfortunately here in Australia most of our specialists/doctors are very slack, even some of the so called scleroderma experts. I expect to get my Echo results next week, which I know that they have found a PA reading. I will ask what the normal range is, and if mine is higher, and if my cardiologist starts to give me any excuses to why he won't do a right heart catheterization (RHC), I will dump him. For me this has been hanging over my head far too long.

Mari, I have had many second/third opinions and have seen many so called Scleroderma experts here in Victoria Australia. Not all of them are up to scratch and they should have their titles "Scleroderma experts", taken off them. If my PA pressure was as high as yours, I would be pushing for a RHC immediately. For your doctors that don't think that a PA reading of 40 doesn't warrant a RHC, I would be going elsewhere.

Too many people put their trust in what doctors say, yes, some give good advice, but others are far too lazy in my opinion. If your PFT, DLCO is on the decrease that is a good indication that you need treatment.

Take care
Celia

#4 CraigR

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Posted 09 December 2008 - 10:40 AM

I've had secondary PH for at least 15 years, and have been taking medication for 3 years. It has yet to effect my heart. Some forms are very dangerous when the levels are very elevated.

I've had 2 right heart catheterizations. No big deal. I can't imagine why your doctor doesn't want you to have this done. The minute my doctors thought the echo could indicate PH, they set up he RHC. It's the only way to be sure.

I was lucky to be near one of the top centers for PH in the world. I'm sorry you're having trouble finding an expert - but keep trying - perhaps a university with this as part of their program? - or somehow, get another opinion, preferably from a pulmonologist with a good background in PH. Fight, fight, fight - it's the only way with this disease and the medical establishment.

Craig