A family becomes e-patients, of necessity — and succeeds

This is an inspiring story from several years ago of how a family became e-patients. When things got rough they were empowered and engaged, taking matters into their own hands. As the picture shows, there’s a happy ending, though it was rough along the way.

Gangadhar & DalhiaUnlike millions in the US today, Gangadhar Sulkunte and his wife Dalhia had health insurance. Even still, despite an at-risk pregnancy with history of miscarriage, the system was unable to get them a prompt appointment for two troubling symptoms. “Three weeks,” the system said.

The couple got in action, did research on the internet, and found a simple solution that the doctor hadn’t suggested. The symptoms went away at no cost to the healthcare system.

As we argue and argue about health reform, I’m inspired by the ways e-patients are getting engaged and taking responsibility for their own care, without increasing costs. Here’s their story.     

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During the first trimester of the pregnancy Dalhia started feeling dizzy, We got concerned and immediately went in to see the doctor, who said it might be caused by many different things and asked us to see another doctor. We made an appointment and waited. The doctor also detected a heart murmur.

The second doctor informed us again that there could be many causes (some serious and some not so serious) and said some sort of test might be required. He said it could only be done after a couple of weeks and we could meet again a week after that – a total of three weeks.

We were very concerned that we had to wait that long to hear about how serious this issue was. In the meantime, Dalhia kept having dizzy spells several times a day which made us more and more concerned. We had a miscarriage during our first pregnancy, so we feared we were again losing our child while waiting for the right doctors and tests to come along.

Instead of waiting, we decided to look on the internet for possible causes of dizziness and heart murmur. One of the websites mentioned that murmurs can be caused by iron deficiency. We realized that my wife was following a vegetarian diet and it was possible that she might have iron deficiency. Since this was a non-lethal option, we decided to try iron supplements while we were waited.

The dizziness reduced overnight and went away in two days!

By the time the appointment came along, my wife was completely fine and the doctor confirmed it. We felt really happy that we took the time to look up the symptoms online since we could not have survived the wait!

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I asked Gangadhar why they hadn’t insisted on an earlier appointment. His answer is sad to hear but provides a clear lesson about the importance of sticking up for what you want:

We had already decided that we needed to be responsible for ourselves.

The first time we were pregnant I was in India tending to my mother who had a heart attack, and my wife was all alone when the miscarriage occurred. We were very concerned and wanted to try to save the baby if at all possible. Her regular doctor would not see her since they do not do emergency appointments and so she was left to deal with emergency room docs and nurses.

They were very casual about it saying “go home and rest, it will all be over by tomorrow morning.” Sure, it might be regular for the doctors to see such instances, but it is OUR child and we wanted to save him/her if at all possible.

In the end my wife spent the nights crying all alone and this led us to an immense sense that we need to keep our eyes wide open when dealing with the healthcare system, and be responsible for ourselves. We were burned by this episode and we did not know what to expect and what not to expect the second time around. We ended up finding a midwife who helped us have our son at home.

We are still in touch with our midwife which we could not do with our doctor.

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Today their son Neel is a pre-schooler. Dalhia is working on her PhD in Sociology at the University of Minnesota, and Gangadhar has decided to create hLog, a personal health data app for the iPhone to empower patients to own their medical data. Follow him on Twitter at @HLogApp.

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E-patient takeaways:

  • Gangadhar and Dalhia first tried to meet their needs through the conventional healthcare system.
  • When that didn’t work, next time around they took responsibility for their situation. No victim role here; they were empowered, engaged. They knew what they wanted, they knew they weren’t getting it, so they took action – for the sake of their family.
  • They used the internet and found better quality, more useful information than “the system” had given them. And sooner.
  • They chose to bring the results to their physician, who validated the finding.
  • For the birth, reflecting on how their previous experience had not met their needs, they elected to use a midwife (another health professional) for home birth.

Note that I’m not recommending that anyone take any particular path. My point is that they learned from their experience, they were empowered, they got in action, and they made their own preferences a priority. In business terms they were empowered consumers. In healthcare terms, they took charge of their own care decisions, instead of expecting an overloaded system (unable to see them for weeks) to do everything for them.

Heaven only knows how long it will take America (and the world) to get to the point where people in need can reliably get what they want. (In May, ACOR founder Gilles Frydman asked “Will the great recession create millions more e-patients?“)

And even when we can all get the care we need, being an engaged, participatory patient will be a good thing for all involved.

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Posted in: e-patient stories | general | Why PM

 

 

Comments

12 Responses to “A family becomes e-patients, of necessity — and succeeds”

  1. ePatientDave says:

    Rough story, happy ending on e-patients.net: Young family becomes e-patients of necessity, and succeeds http://is.gd/4cxtj

  2. ePatientDave says:

    Rough story, happy ending on e-patients.net: Young family becomes e-patients of necessity, and succeeds http://is.gd/4cxtj

  3. Amy Romano says:

    There are so many aspects of this story that are familiar to me. First, the care (or lack thereof) that this family received around the time of their pregnancy loss is quite typical in our system. Although there is very low chance, if any, of saving a baby once a miscarriage has begun, it does not mean women shouldn’t get expert care around this time. For one, there are risks to the mother. For another, patients have very significant emotional and informational needs at this time, not the least of which is reassurance that they didn’t do anything wrong to cause the miscarriage. About 25% of pregnancies end in miscarriage, which amounts to a lot of missed opportunities to give this emotional and informational support.

    The other familiar aspect is that this family ultimately chose a home birth with a midwife for the birth of their child. I personally believe that this is a healthy choice for healthy women with uncomplicated pregnancies and access to hospital care if the need arises. I spent most of my midwifery career working in out-of-hospital settings, and I can attest that the best source of business for homebirth and birth center midwives is our dysfunctional hospital-based maternity care system. So many women who never considered having a baby anywhere but the hospital came to us for their subsequent births because they had been traumatized or just simply disappointed in their previous maternity care experiences. Certainly by far the best place to get *participatory* maternity care these days is in a home birth or birth center settings. Unfortunately, not all women can or should give birth in these settings, and they’re too often stuck with the opposite of participatory care. The story of a woman who is fighting to have a vaginal birth after a prior c-section at Page Hospital in Arizona provides a poignant example of this. The hospital is threatening her with court-ordered surgery if she arrives at the hospital in labor (despite the fact that she *had* a VBAC at the same hospital 2 years ago before the hospital had changed their policy). I am told that this particular woman is planning to give birth at a hospital 5 hours away from her home (a hardship, given that she has 3 kids to look after). But an increasing number of women in her situation are choosing to have home births, sometimes without any professional attending them at all.

  4. ePatientDave says:

    Rough story w/happy ending: Young family becomes e-patients by necessity; succeeds http://is.gd/4cxtj (e-patients.net)

  5. Cindy Throop says:

    #whyPM –> Check out @hlogapp's experience with participatory medicine http://tinyurl.com/yjqa394

  6. ePatientDave says:

    Thank YOU for SHARING it! http://is.gd/4gh1n RT @hlogapp: @ePatientDave Thank you for posting our story on your blog!

  7. A family becomes e-patients, of necessity – and succeeds. ( http://ping.fm/bLMw1 ) http://bit.ly/22I8G0

  8. A family becomes e-patients, of necessity – and succeeds. ( http://ping.fm/bLMw1 )

  9. [...] year ago Ganghadar Sulkunte shared his story here about how he and his wife became e-patients of necessity, and succeeded, resolving a significant [...]

  10. [...] from SPM member Gangadhar Sulkunte (Twitter @gangadhargs). See also his family’s intense personal e-patient story from [...]

  11. Sheila says:

    Unfortunately there are many cases like this, and not all of them have an happy ending. This was a happy event that those parents discover the problem on time,today the internet gives us many solutions to our problems, with no costs.

  12. [...] post by SPM member Gangadhar Sulkunte. We posted his family’s e-patient story two years [...]

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