Our Journey: How Digital Health Communities Got Us Through Tough Times

So I want to take you back to 2007, and tell you about the epic journey that my wife and I had through the health system…

Now the stereotype of pregnancy is that it is a wonderful, happy time, and of healthy, glowing expectant mothers.  Well, not so much.

When my wife was pregnant with our two beautiful children, she suffered from a terrible condition called hyperemesis gravidarum.  Severe nausea and vomiting during pregnancy.  But this wasn’t just morning sickness.  She was violently nauseous and bed-bound for almost the full 9 months.  She would vomit between 10 and 30 times a day.  It turned our lives upside down.

During the first pregnancy she gave up work at 5 weeks pregnant as she couldn’t physically work any more.  She was hospitalised for the first time at 8 weeks.  We had to move house at 10 weeks as her hyper-olfaction meant that she couldn’t tolerate the smells of our (fortunately rented) federation house, and went to live with her parents for a couple of months while we worked out what to do.

Over the course of the pregnancy she was hospitalised about 15 times, for anything between a day and a week.  She would deteriorate to the point where she would be vomiting every 10 minutes, and I’d take her to hospital.  It was a horrible, miserable experience for her, and a stressful one for me as her carer.  You know you’re a frequent flyer when an obstetrician says to you “I don’t know you but I have heard of you”.

My wife’s GP was compassionate, but the condition escalated so quickly that most of our interactions were directly with the hospital.  And they did a great job – I don’t have a bad word to say about the care that was delivered to us.  But it was a hard time.  It was confusing.  It was emotional.  We didn’t know what was happening to us.

Unfortunately, not every doctor believes that hyperemesis gravidarum is real.  It didn’t happen to us, but we’ve met women who were told that this was happening because they didn’t want their baby enough.  We’ve met women who were told that this is a psychological condition, not a physical condition.  We’ve heard of women who were admitted to mental institutions because their clinicians believed that this was a mental health issue.  We’ve heard of women who have had abortions for babies that they wanted, because they couldn’t take the suffering any longer.  That’s a powerful picture of the horrific suffering caused by 9 months of debilitating nausea.

On top of the emotion was the expense.  Whilst the hospital stays were free (and we’re so grateful for Australia’s wonderful public health system), medication was not.  The anti-nausea medication ondansetron had no generic at the time, and cost $10 per tablet.  My wife was taking up to 4 tablets a day.  And whilst this medication is on the Pharmaceutical Benefits Scheme (PBS) for patients undergoing chemotherapy, it’s not available on the PBS for women with hyperemesis.

And on top of the expense was the stress.  Ondansetron is rated as a Class B drug for pregnant women.  It’s probably fine, but it hasn’t been studied enough to know that for certain.  In addition to everything else, it was another stressful thought that we had to deal with.

Up to 20 weeks of pregnancy the pathway was (although I’m not sure if it still is) that we had to go to the emergency department.  Beyond 20 weeks we were allowed to go straight to the maternity ward.  Let me tell you, we were hanging out for 20 weeks.  Not that the emergency department didn’t do a good job.  But by definition, they treat symptoms.  They treat nausea and dehydration, not a pregnant woman and her baby.  They patch you up and get you out of there.  It’s their job.

So with that said, I want to share with you one of my dilemmas I had as my wife’s carer.  As you may know, nausea causes dehydration and dehydration worsens nausea.  When my wife was so sick that she couldn’t drink then she would gradually start to slip below what I learned to call ’the line’.  Once she was ‘below the line’ she would generally be vomitting every 10 minutes until we got medical help.  Once she was ‘below the line’ the only way to get back above it again was through IV drip and IV anti-nauseal drugs.

But here was my dilemma – up to 20 weeks, we had to justify her being sick enough to go to emergency.  You can’t just turn up in emergency and say ‘from my experience, my wife is starting to deteriorate and I’d just like you to proactively put her on a drip’.  They would send you home.

So the current emergency model of care actually works against early intervention for conditions like hyperemesis, particularly when there is no alternative way to receive care.  Early intervention would have been cheaper for the hospital, and more comfortable for us.  But, despite enquiring whether there was any model of care that allowed my wife to be cared for at home, we were told that there wasn’t.  Now that might have changed, but I suspect it hasn’t.

 

Throughout this time I was my wife’s carer, but also her advocate.  Now, she is a very capable woman, but you need to understand that she was often so sick she couldn’t speak for fear of throwing up.  So thank God for the internet and Digital Health Communities.  In particular, the Hyperemesis Education and Research Foundation and their website – helpher.org.

her1

 

I need to point out that this is not about self-diagnosis.  My wife already had a clinical diagnosis of hyperemesis gravidarum (regardless of the fact that some clinicians don’t believe the condition exists).  What we did want and need though, was deeper explanations.  We wanted information.  We wanted to hear other peoples stories.  We wanted to share our experiences.  We wanted somebody to listen and understand what we were going though.  We wanted community.  We wanted compassion.  We wanted care.

A few Digital Health Communities, but particularly HelpHER gave us all of those things, as well as a number of lasting friendships.  Through this online community we received emotional and psychological support.  On many nights I sat there on my laptop talking to people who understood what we were going through, when my wife was too sick to have me in the room, let alone talk to me.  We felt validated in our experience.  We were encouraged by others who had been through times this hard and this awful and come out the other side.  We got to talk to other people about our worries about taking a Class B medication in pregnancy.  What did that mean?  What studies had been done?  We got helpful pointers to what worked for other people and what didn’t – following days when I swore I would have punched anybody who asked me again, “have you tried taking ginger?”.

So I want to ask you a question.  Where did healthcare occur here?

My view?  Everything I’ve described was healthcare.  The GP appointments, the hospital stays and the online community.  It’s all healthcare.  It was all vital.

An hour after giving birth, my wife was fine.  The nausea went away.  And it armed us to do it all again.  Yes, that’s right.  Two years after we welcomed our son, we also welcomed a daughter.  After being equipped with the knowledge we needed to do it again.  And the amazing support of my sister, who came out from the UK to live with us and look after my son (as my wife was too sick to do so) for 9 months so I could work.  We’re eternally grateful.

Now I want to recognise that not all Digital Health Communities are created equal.  Some of them are rubbish.  Some share health information that is not correct.  And yes, sadly, some people are idiots.  But remember, we didn’t use this community for diagnosis or other medical advice.  We used it to understand what was happening to us.

I also want to point to the amazing value of another Digital Health Community for patients and carers – PatientsLikeMe.  This community gathers patient reported information about conditions, symptoms, treatments and medications.  The availability of aggregated patient reported outcome data is an amazing support for patients and carers.

The following screenshot is an example of a drug treatment report for Ondansetron, the Class B anti-nauseal drug that my wife took almost every day of her pregnancies.

plm

 

This information shows me what other people are taking this drug for.  What side effects they perceived.  What dosage they took.  How effective they thought it was.  It’s another layer of comfort that I can use to validate and normalise my own experience with a drug.

Note this is a world away from Googling my symptoms and self-diagnosing.  This is data that our GP doesn’t have access to.  This shows the power of Digital Health Communities to support the democratisation of medical knowledge, driving greater patient and carer engagement.  Without this support, I don’t know if we’d have got through our experience.

Perhaps we should think a little longer about the formal role of Digital Health Communities in our health system…

 

One Response to“Our Journey: How Digital Health Communities Got Us Through Tough Times”

  1. September 1, 2016 at 5:01 am #

    Thank you for writing this ! You rock !

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