International Faces of PH

Jas Kalra

When we asked Jas to share his perspective as a PH caregiver he said “I will. Gladly. Anything for PH.” It’s the same feeling that so many spouses of PH patients feel the world over. If your better half is a PH patient, we think you’ll find a lot in common with him!

From India, with Love

I love the monsoons in Bombay, where I and my wife grew up, went to college together, dated, married and had two lovely kids. But on that dark August day last year, the torrent seemed to beat my chest as I stepped outside the doctor’s chamber. In a span of a week, the diagnosis for my wife’s breathlessness had shifted from atrial septal defect to primary pulmonary hypertension. The first reaction was that of disbelief. I went in for second and third opinions fervently hoping that the doctors would dig out the ‘hole’ that the first echo had erringly put the cause to. The ‘no known cause’ line stayed and PPH was the new guest at our place.

A few words must be said of the medical system in the country. In about 45 days, we consulted with 13 cardiac/pulmonary specialists at various stages of diagnosis and in different parts of this big country. In my opinion, as a former pharma marketer and doc watcher, eleven seemed capable of a PPH diagnosis in the first visit with appropriate tests made available to them. Of the seven who had seen PPH cases earlier (including a US based heart/lung transplant surgeon), only five were thoroughly aware of the mainstream allopathic medications available in the country. Four of those five had the hope, patience, keenness or control to try out drug combinations over a period of time and test patient responsiveness. Two offered patient dos and don’ts.

The detection and survival rates for PPH have altered dramatically in the course of the last decade. However, a lot of the information available is gloomy and dated. Especially in India, where prostacyclins and ambrisentan are unavailable due to the small market size, despite the country’s being a hub of low-cost pharmaceutical re-engineering. The silver lining however is that the traditional herb system (ayurveda), yoga and homeopathy are legitimate in India and have some meaningful cardio-supportive supplements, therapies and food advice to offer.

My biggest challenge as a caregiver has been to put it across to my wife that there is a lot of treatment we can do based on what patients are already doing around the world, mainstream or alternative—the online PH group abounds with tales of courage, ingenuity and survival. Given the quantum of research, the promise of a cure is real. I tell her that I believe we will together grow old, fat and grumpy and that, one day, we will have grandchildren to see.

When times get tough, and perhaps relatives, help and luck have deserted one, seemingly altogether, we have learned to soldier on in a way akin to what the noted poet Tagore prescribed: “If you must, walk alone.”

A final note. Love bonds. It heals. It cures. I see the same glint in her eyes today that I saw every single day when we dated. The delight in getting lost on a long drive is back too. Except, now, we always have two noisy and mostly hungry kids in the rear.

- Jas Kalra

Doctor Notes from leading heart hospitals in India

Dr. Ravi Kishore, Senior Cardiologist, Narayana Hrudalaya, Bangalore:

The key issue in India is that the diagnostic modalities are restricted to urban centers, hence a vast number of patients remain undiagnosed. There is a also a perception among a majority of treating physicians and cardiologists that the diagnosis spells a death knell for the patients as there are very limited treatment options available. Newer drugs like bosentan are expensive. Prostacyclin, if at all available, comes at a huge price. And heart-lung transplant may not see the light of the day in the near future.

An important issue is a remarkable lack of awareness of the diagnostic and therapeutic options, underlining a need for an educational initiative.

One sliver lining is that the increasing use of CTPA in a few hospitals has allowed us to pick up thromboembolic PH in some of these patients diagnosed as IPH and effectively manage them.

Dr. Rahul Mehrotra, Consultant Cardiologist, Medanta Heart Institute, Gurgaon (NCR):

The disease is as much prevalent in India as in other parts of the world - only two oral drugs are however available here - bosentan and sildenafil - which significantly hampers the line of effective treatment in the country.

The management of the disease is demanding for the patient and the caregivers - counsel regarding drugs, changes in lifestyle, marriage and family life have to be included.

Research, development of integrated therapies and state of the art procedures like embolectomies and transplantations are the need of the hour for PH patients.

Dr. Geetha Krishnan, Senior Ayurveda Consultant, Medanta Heart Institute, Gurgaon (NCR):

By classification the disease happens to fall under the "Asadhya" or "Yapya" category, which means "unable to cure completely" or "treatment to be oriented to prevention of complications and severity of disease" respectively.

In management of PAH, the general approach one takes is to create "vata anulomanata" which in simple terms means "channelising the energy."

Panchakarma (purifying) proceedures such as vasti, mridu virechanam and pratimarsha nasya are found to offer good support when used judiciously in the course of the disease.

 

 
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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.