Jump to content


Do you want up to date information about Scleroderma? Check out our Medical pages at www.sclero.org for all your Scleroderma questions!


Photo

Sclero Specialists


  • Please log in to reply
8 replies to this topic

#1 bookworm

bookworm

    Silver Member

  • Members
  • PipPipPipPip
  • 292 posts
  • Location:Texas

Posted 06 January 2008 - 11:16 AM

Does anyone know anything about Dr. Fernando Torres in Dallas? I was recently diagnosed with mild to moderate pulmonary hypertension and I was given his name as one of THE BEST sclero and PH specialists in Texas.

I looked for him on the list of experts on this website and he isn’t listed, although a colleague of his at Southwestern Medical School is listed. (Dr. Torres also is at Southwestern)

The person who said that Dr. Torres is really good, is himself a sclero and PH expert. They are his specialties and he devotes about 80 hours a week to this. He is a friend of my daughter and son-in-law and they know him very well. I’d go to him but he is in California. He also is not on the list on this website, but I absolutely believe he must be excellent from what my family tells me. He urged them to tell me to be sure to find an expert and said so many regular doctors do not really understand or know much about sclero, but will try to treat it anyway -- don’t we know!!!

I have an appointment with my rheumatologist in a couple of weeks and she will be suggesting a pulmonologist, from what I understand from her nurse. If I request Dr. Torres as my pulmonologist, I believe my rheumatologist will be agreeable, but I am worried about what to do.

This disease is so confusing. I have CREST and I thought people with that did not usually get PH. I just had some heart tests run because I was having severe chest pain. It turns out my heart is fine, but they say I have PH. An article on this website says you can’t diagnose PH with an echo cardiogram and a stress test, yet that’s exactly what my heart doctor did and he says you can. I don’t believe him!

As for the severe chest pains, I am still having them off and on, but at least I know now that I am not having a heart attack..

Interestingly, the family friend who recommends Dr. Torres also said you can’t diagnose PH that way -- he didn’t know that’s exactly what they had done to me -- and he sited the very article that’s on this website that says you can't. This is one reason I think he knows what he’s talking about!

Anyway, I am feeling scared and would really like to hear from some of you. Waiting is hard. I’d like to be seeing my rheumatologist about this tomorrow but the appt. is not for a couple of weeks.

Thanks in advance for any information.

Mary in Texas

#2 truman

truman

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 625 posts
  • Location:NJ

Posted 06 January 2008 - 01:04 PM

Hi Mary:

If you family tells you this man is pretty good, and someone from your family will go with you, I'd say go for it. One you go and are diagnosed by him, what's next? Can you keep traveling to California?

Have you tried calling this doctor and asking him or his office to recommend someone in your area?

I was recommended a specialist about 15 miles from my house, but being alone and not being able to drive for a while, I find it's not good timing for me as I've recently been through an operation and a little skiddish at the moment. Need time to recoup by thoughts and confidence again.
Tru

It is what it is...........

#3 janey

janey

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 2,118 posts
  • Location:New Mexico

Posted 06 January 2008 - 01:20 PM

Mary,
Certainly understand your frustration and nervousness. Been there. I was diagnosed with mild PH (via an ECHO) over a year ago. Bosentan (Tracleer) has reduced my PA pressure (as measured by an ECHO) from 45 to below 30. So when caught earlier, it can be treatable.

Here is the bio from Dr. Fernando Torres @ UT SW Medical Center. It shows his specialty as pulmonary disease, specifically PH. Being a PH specialist, he probably does know A LOT about scleroderma, but his bio doesn't list him as a scleroderma specialist.

Pure CREST does not have symptoms other than CREST. However, there is limited with CREST that can develop symptoms of Limited (like PH). In fact some sources are now just listing CREST as a form of Limited.

Diagnosis of PH- There is a new study in this newsroom this week that identifies a A new method allows for the early diagnosis of pulmonary hypertension. Many doctors (including my own rheumatologist) say that a RHC is the ONLY true measurement of PH; however, my pulmonologist who diagnosed me said the ECHO was sufficient especially since my PA had continued to increase over a 3 year period. I couldn't find the article you referred to about not being able to diagnosed PH with a stress test / echo. If it's more than 2 years old, things have changed. There have been several studies that have shown other methods as being effective for an early diagnosis. I believe the most exact measurement is still the RHC, but because it is so invasive, many doctors hesitate to use it. That's why researchers continue to test other methods.

I hope this information has helped. There is so much information out there and at times it seems to contradict, so your confusion is justified. I stay confused most of the time. Please let us know how your appointment goes tomorrow. We'll be thinking of you.

Big Hugs,


Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#4 Clementine

Clementine

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 684 posts

Posted 06 January 2008 - 02:03 PM

Mary,
I know how you are feeling. Two and a half years ago I was in your place.
It's so much better now...

I just wanted to give you some encouragement by telling you my story. I had PH when I was first diagnosed and my pressure was 45!!! Without a PH medication, it's now at 25. I had a right heart catheter and echo.

Good luck with everything. I bet your Dr. is fine.

xo,

Tangie

#5 reese

reese

    Bronze Member

  • Members
  • PipPip
  • 13 posts

Posted 06 January 2008 - 04:33 PM

Hi Mary-

I live in Dallas and have mixed connective tissue disease with some sclerodermoid skin changes that were treated at UT Southwestern last year.

Dr. Torres is a great choice for your PH; however, UT Southwestern no longer has a sclero expert. They referred me to the apparent 'best in Texas' - Dr. Mayes in Houston and she is wonderful. She is actually the principal investigator on the sibling sclero research program I believe has been mentioned on this site. You can also find her contact info on this site-just not sure of the link but I bet someone could help you here.

There was a young sclero doctor doing her fellowship at UT Southwestern last year I saw a few times that was really good and when her fellowship was over she chose to leave Dallas and work with Dr. Maureen Mayes in Houston because of her expertise.

May be worth the trip at least to have her evaluate you. Best of luck to you.

#6 peanut

peanut

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 738 posts

Posted 06 January 2008 - 05:29 PM

Hey Mary,
Janey is right - a right heart cath (RHC) is the only precise way of diagnosing PH. An echo and blood tests can show PH but its not perfectly accurate. My PH did NOT show up in the echo but did.

I hope you find a good doctor you can trust!

peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#7 peanut

peanut

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 738 posts

Posted 06 January 2008 - 06:54 PM

Oops. I meant to write my echo revealed nothing abnormal. I still felt short of breath and my doctor thought my heart sounded a little fast so he ordered a RHC which revealed mild PH. I'm glad we pursued it further.

peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#8 bookworm

bookworm

    Silver Member

  • Topic Starter
  • Members
  • PipPipPipPip
  • 292 posts
  • Location:Texas

Posted 07 January 2008 - 10:13 AM

Thank you all so much for the encouragement and information. I want to say more, but, right now, I am not feeling very well, so I will come back later -- but I did want to say how much I appreciate all of you. This is a great forum.

Mary in Texas

#9 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,261 posts
  • Location:Minnesota

Posted 08 January 2008 - 09:43 AM

Here is an excerpt from that article about not being able to be diagnosed with Pulmonary Hypertension with just a stress test/echo

How is PAH/PH diagnosed?

Pulmonary function tests can be helpful. Patients in whom the diffusing capacity is reduced, either as an isolated finding or out of proportion to changes in their forced vital capacity, are more likely to have PH. Blood pressure in the lung can be estimated and the size and function of the right ventricle assessed by Doppler
echocardiography. This noninvasive test uses sound waves to image the
chambers of the heart. However, Doppler echocardiograms are notoriously inaccurate when the PH is mild or when there is simultaneous presence of lung scarring. A small protein released by stretched heart muscle, known as brain natriuretic peptide (BNP), can be measured by a simple blood test. Elevated levels are a strong clue for suspecting PH.

PH cannot be diagnosed without right-heart catheterization. This is an invasive test performed by specialists in cardiology, wherein a slender tube is introduced into the circulation, and advanced carefully to the right side of the heart and into the lungs. Careful measurements of blood flows and pressures define the
diagnosis of PH.

Injury to the endothelial cells that line healthy blood vessels leads to overproduction of endothelin, "a key cause of blood vessel scarring and spasm
and to reduced production of nitric oxide and prostacyclins, two key body chemicals that keep blood vessels relaxed and open."

That said, a great many doctors or clinics may try to skirt the issue of the RHC in order to keep costs down or for quick answers; but this greatly increases the number of wrong diagnoses of PH -- and *missed* cases of PH.

A wrong diagnosis can be extremely expensive in medication costs for the patients, the going rate being about $3,000 a month for one of the leading medications. And a missed diagnosis may cause a premature fatality.

Even though I have to agree that the RHC is very invasive, it is still less "invasive" than being diagnosed, evaluated, or treated inaccurately. So for proper screening for PH with scleroderma, please feel free to copy this article and take it to your doctors, especially if they are encouraging a short-cut to diagnosis.


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.