Even a Physician with
PH Can Be Misdiagnosed
By Lynn Brown, MD, Sometimes It's PH Campaign Chair
Dr. Hudak |
Diagnosing PH is often so tricky that even a patient practicing
pulmonology can experience delayed diagnosis.
That’s what happened to Bonnie Hudak, MD, a new member of the Sometimes it’s PH early diagnosis
campaign’s Education Committee.
Dr. Hudak is a pediatric pulmonologist at Nemours Children’s
Clinic in Jacksonville, Fla., where she often treats asthma and cystic
fibrosis but not PH. Yet her path to diagnosis parallels
that of many other PH patients, particularly middle-age women.
Dr. Hudak had long been treated for scleroderma and
Reynaud’s disease. Her rheumatologist knew
of the association between PH and scleroderma. Dr. Hudak maintained a healthy weight, exercising
regularly while practicing medicine and raising children. In her 40s, exercising became more difficult,
but with her busy life, she says she paid this little attention. Then while
hiking in 2004, Dr. Hudak discovered that at altitude she could not walk
uphill.
In Jacksonville she underwent an echo, an EKG and a chest
x-ray. Her doctor called the results “maybe
slightly abnormal.” He was reassured and attributed her symptoms to perimenopause
and deconditioning. He reported that the
cardiologist had considered her echo normal. “They were happy with normal, and
I was, too,” Dr. Hudak says.
Still, Saturday morning tennis games left her tired all
weekend. Once, at a neighborhood party, she
was chatting with a cardiologist friend. He told her firmly, “anyone with scleroderma
and shortness of breath with exercise has PH
unless proven otherwise.” Two weeks
later she was diagnosed by right-heart catheterization and referred to a PH
specialty center.
Dr. Hudak’s experience at Mayo Clinic in Jacksonville under
the care of Charles Burger, MD, highlights the importance of referral to
specialty centers, a key element of the Sometimes
it’s PH campaign. In a single day she received comprehensive testing
including a more detailed echo which successfully measured tricuspid
regurgitation velocity. Those administering these tests pursued results
doggedly.
Dr. Burger also admitted Dr. Hudak to the hospital for a right-heart
catheterization that included a vasodilator challenge. Without that thorough
procedure and all of the necessary testing, Dr. Hudak’s vasoreactive type of PH
would not have been discovered. Dr. Hudak has stayed on nifedipine as her sole
PH treatment and has improved from Class III to Class I. She has also participated in a clinical
trial.
In her practice Dr. Hudak now looks for a few more zebras among the horses. She also looks more carefully at the data used to interpret studies. She would advise other physicians to be more vigilant with a patient who has an underlying condition associated with PH and to work up minimal symptoms that may be due to PH. She also suggests further evaluation if existing results don’t make sense in the clinical setting.
In her practice Dr. Hudak now looks for a few more zebras among the horses. She also looks more carefully at the data used to interpret studies. She would advise other physicians to be more vigilant with a patient who has an underlying condition associated with PH and to work up minimal symptoms that may be due to PH. She also suggests further evaluation if existing results don’t make sense in the clinical setting.
Dr. Hudak’s experience illustrates that both patients and professionals must be more active in questioning the data and the decisions that drive diagnosis. Her unique insights will be an asset as PHA works to enhance primary and specialty care professionals’ ability to diagnose and treat PH promptly and correctly.
To find out more about Sometimes
it’s PH, visit the SometimesItsPH.org website.
I had been diagnosed with asthma. Now I am wondering if it were the start of my PH and had been overlooked for years. I wonder that, if it had been caught early enough, I might have been able to avoid going on oxygen and infusion treatments!
ReplyDeleteI had a similar experience but was diagnosed with PAH just a few years after being misdiagnosed with asthma.
ReplyDeleteThat took place exactly 12 years ago and I am still going strong on a "cocktail" of tracleer, ventavis and revatio. Of course, I take coumadin and diuretics as many others do.
Was diagnosed by the wonderful Dr. Richard Channick when he was at UCSD.
I was diagnosed with ph in May this year by my cardiologist. she didn't seem overly concerned, so I wasn't either.But I started researching online and started thinking this is the end of my life! I did not know anything about my PH. So I wrote down my questions for the next appt. I have secondary ph, Doc said we just treat my asthma and heart conditions.period. I had a mitral valve replacement in 1998. I also was diagnosed with fibromyalgia years earlier.So I don't need to see doctor at National Jewish uHosp. in Denver? No
ReplyDeleteYou definitely need to see a PAH specialist. I was lucky enough to be diagnosed by my family physician but there wasn't a specialist around for 800 miles. She sent me to a cardiologist and pulmonologist 50 miles away. That was no picnic..they know alot but they don't know what a specialist knows. Finally after 2 yrs a specialist moved into the area. Not smooth sailing every since, but much better! :)
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