e-Patients: being our own guardian angel

I am now in week 5 of the eHealth MOOC I wrote about in my last post.

It has been a revelation.

The most eye-opening subject was covered in week 3: eHealth for patients and citizens: all about e-patients.

Before we go further, meet e-patient Dave deBronkhart.  His story cuts to the chase: it saves me writing and it saves you reading.  It only runs for 16 minutes, and its great!


What’s the key message? If Dave saved his own life after his healthcare community let him down, so can we.

An e-patient is a type of expert patient.  One who uses online resources to get knowledge, to connect and share with other people in the same situation, who is action-oriented; a believer in  self-care and their own abilities to contribute to their health and well-being.

According to Tom Ferguson, an American doctor who coined the expression, an e-patient is equipped, enabled, empowered and engaged.

In short, when we become an e-patient, we become our own guardian angel.

Most of us BigD-ers are well on the way to e-patient-hood.  Already we take the time and make the effort to understand our health problems and we want IN on our healthcare, ideally as collaborating partners.

And we are not alone; we are part of a worldwide movement that is becoming a force for massive change.

But not everyone it there yet.  This blog still receives a steady stream of anguished and angry comments on one of its most disturbing posts: Dialysis, fistulas and fatal haemorrhages.

Since 2011, more than thirty grieving relatives have written about a loved one whose fistula was infected or blocked, or became fragile and weepy, who was ignored and fobbed off by an inadequate health  care service until they died, often in a pool of their own blood when the fistula ruptured.  Here are just two examples so far this month:

Marlene wrote: “My 40 yr son was found on his bathroom floor bled to death from a ruptured and infected fistula, 4 days after a declot procedure. He was trying to tie his tee shirt around his left arm to stop the bleeding. He had a declot procedure done on the 11/28/14. The vascular doctor who performed the procedure contacted my son’s nephrologist at the dialysis center and informed him of the condition of his fistula and that he needed to have it taken care immediately.

My son was discharged home to die. The vascular Doctors should have called the ambulance and sent him to the hospital for immediate surgery. This is a situation you do not put off. This is life and death.

The police found him dead on his bathroom floor, for crying out loud. Mr D where do we go from here. He has small children who need answers.  Some doctors do not listen attentively to their patients. What’s my next step for the sake of my grandchildren?

Juana wrote: “My daughter’s port fell out they put another one in Saturday the 25th 2015 took her to the hospital. One week after they put the new port in they said that she is very sick and she had an infection, She died on the 27th 2015. I want an answer. I don’t understand.  My baby was 23 years of age. Why didn’t they know about the infection at dialysis? I need an answer; what do I do?”

While these dreadful outcomes and the others in the post are mostly the result of healthcare inaction, it could also be because our guardian angel, our one resource that cares for us above all else, our e-patient, was missing.

All BigD patients need to become e-patients.  No more a passive recipient of care, going to dialysis, closing our eyes, putting out our arm and hoping for the best.

Imagine a world where every BigD patient is backed up by their e-patient guardian angel.  How many infected and ruptured fistulas, let alone horrible deaths would happen then?

The rising eHealth tide is lifting all boats

Most of us have heard of eHealth – short for Electronic Health, and in its simplest form meaning the use of information and communication technologies for health delivery and management.

While that sounds pretty dry and not that interesting, eHealth is a tsunami, riding on databases of health information and innovative, patient-centred, wireless and wearable technologies that are changing health care systems and health services delivery around the world.

  • If you wear a FitBit, Jawbone, or other fitness tracker, or know someone who does, that’s eHealth
  • If you use an App for tracking your food intake, heart rate, sleep patterns or just about anything else you do, that’s eHealth
  • If you have used a health service delivered via broadband or mobile phone (telehealth), had surgery via a robot operated by a local or remote surgeon, or have been diagnosed and treated remotely by phone (telemedicine), that’s eHealth
  • If you live in one of the many European, African, Asian, Oceanic (including Australia) or American countries around the world whose government has developed an eHealth strategy and funded projects to create a national database for Electronic Health Records (EHRs), that’s absolutely eHealth
  • If, like me, you track your heartbeat for AF on your smart phone and send ECG’s to your cardiologist using AliveCor’s Heart Monitor, that’s eHealth
  • If you are using an iPhone with the new iOS 8 operating system, then you already have the HealthKit and Apple Watch Apps, which are the forerunners of Apple’s Ecosystem For Your Body, the latest in a wave of new smart phone based, personal eHealth.

So, what is the objective of eHealth?  At the big picture level, the answer is simple: better healthcare outcomes.

As for the detail, it depends on who you ask.

  • For government: a single eHealth record used by all hospitals, health professional and service providers, will save their health system $ billions a year by cutting the diagnosis, treatment and prescription errors that lead to thousands of unnecessary hospital admissions
  • For medical organisations, eHealth is delivering new and innovative tools and techniques resulting in more effective and targeted services, accompanied by a reliable and sustained income stream
  • But it is for BigD-ers, and every other person on this planet concerned about their health, that the eHealth wonder is delivering the most: new insights, protocols, pathways and tools that are changing the way we think about and look after ourselves: right now, today.

That’s right: we are where the eHealth rubber hits the road.  It’s up to us: the more we know, the more we get engaged, the better we collaborate and control our health care, the healthier we’ll be, the better our quality of life.

So I asked myself:  how can I get more involved?

Luckily, on the Internet, ask and you shall receive: I found a new eHealth MOOC!  Talk about great timing.  (I’ve written about Massive Online Open Courses before, where you can learn about just about anything, expand your mind and pay nothing.)

Called eHealth – Opportunities and Challenges, it is run by the Karolinska Institutet (a very prestigious university in Sweden).  Among other things, it is designed to “… help you to understand the opportunities and challenges of the field”.  Quick check: yes, it’s in English, so I signed up.

It started a week ago (23 April 15), and it’s great!  It is short, only 6 weeks, and involves about 6 hrs per week.  Each session has brief, pithy videos talking to eHealth practitioners and experts from around the world; simple assignments and lots of opportunities to interact with people doing an amazing array of eHealth stuff: things that can benefit you and me.  At last count, 5000 students are registered from just about everywhere (the M in MOOC definitely means massive).

So if you want to tap into the benefits of eHealth (and you obviously do or you wouldn’t be reading this) and want to make your own health care future, check out and register on the MOOC.  It’s not too late, registrations are still open.

Maybe we can meet and solve sort out some of BigD’s big problems together on the forum.  Whatever floats your eHealth boat.

Stopping dialysis: Really?

Doris recently wrote:

My husband has been on dialysis for 3 yrs this May. Before kidney failure he had diabetes and heart disease. To look at him, you wouldn’t think he was sick at all. But this year in December, he is planning to stop dialysis.

The thing is, I don’t blame him. With all these diseases he has been through hell.

He doesn’t really think he’s going to die, and that would be so awesome.

So he’s trying to see if there is a way to control his potassium. Any suggestions?

 

Hi Doris.

My initial reaction is that your husband probably looks healthy because like many others on dialysis, he IS mostly healthy.  That’s because he is getting good quality dialysis and his fluid and body chemistry are mostly well balanced.

As anyone who is healthy on dialysis will tell you, it is a delightful but precarious place to be.  One slip in diet, dialysis or the physical world and that healthy look and feel becomes a rosy memory.  So he should enjoy it and not take it for granted.

With regard to staying alive after stopping dialysis, there is only a fine line between hope and self-delusion.  And in this regard, he is not Robinson Crusoe.  We have all hoped, prayed and believed against all evidence that our kidney disease will go away.  It is a normal part of the grieving process.  However, one way or another most of us have been proved wrong.

Unless his kidney disease is of a temporary nature, it is highly unlikely that he will live if he stops dialysing.  If he has some residual kidney function (ie he is still producing urine) and the kidney can recover, there may be hope.  However, based on his having diabetes (which is the major cause of kidney failure in the western world) it is likely that his kidneys are damaged beyond recovery.

Also, the first and most obvious outcome of kidney failure is fluid overload, which makes breathing difficult and overworks the heart.  Sadly, the most common cause of death among kidney patients is heart attack.  Most of us have heart disease, usually caused by years of fluid overload and high blood pressure.  If your husband has a history of heart disease, then stopping dialysis will make it worse.

But my question is:  Why stop?  He seems to be reasonably healthy; if he not in pain, not bedridden or unable to function normally, why seriously contemplate stopping?  Is he serious, or simply angry and frustrated at having to dialyse?  It takes a long time to accept life on dialysis.  It took me about eight years and two transplants.  I still don’t like it but I accept it.  It keeps me healthy and I can do most of the things I want, when I want.  To misquote a popular song, if you can’t be with the life you love, love the life you are with.

After all, there’s no coming back from the alternative; we have all faced the question: To be or not to be?

I often image that there is no such thing as dialysis, and I died in 1995.  Over the 20 years since then my kids have grown up – two have married wonderful people and have produced four delightful grandchildren, and the third will be married to another beauty next year; Julie and I started a business together, where I work from home and I love it; we have travelled around Australia, to Europe, and Asia (where I sampled the delights of foreign dialysis centres) and I would have missed the lot.

Luckily, somewhere along the way, I realised that I like my new life.  As they say here, I wouldn’t be dead for quids (dollars).

Sit down and have a talk with your husband.  One of those life talks:  Why now?  Why December? What if he’s wrong?  Talk about your future together and especially yours if he dies.  Talk about what he will miss.  Decisions like this are joint decisions.  If you want him around for a while to come, don’t be so agreeable and understanding.  Not blaming him for wishing he was dead?  Maybe.  But accepting that as a sensible decision? I don’t think so.

With regard to wanting to control potassium in his diet (which is a good sign!), have a look at the Dealing with Potassium leaflet I received when I asked my unit the same question about my potassium level.

Good luck and keep in touch.  Greg

Kidney transplants in China – the real story

Two days ago (7 Apr 2015), SBS Dateline broadcast Human Harvest: China’s Organ Trafficking.

Just 24 minutes long, it is a truly shocking story about the source of kidney and other organ transplants, with evidence from the doctors who performed some of the operations.  Organs, including corneas and kidneys brutally removed without anaesthetic from tortured political prisoners, who are then killed and disposed of.

Not just a few transplants either.  10,000 organs are transplanted in China every year.  Allowing for tissue matching, that may represent five to ten time that number of people.

China has become a destination for people wanting to avoid waiting lists and get a quick transplant.  And who amongst us has not had that thought flash through their mind at one time or another?

It is hard to believe and even harder to watch.  But watch it we must, to understand what the real price of jumping the waiting list can be: not just a risk to our body, but a Faustian deal with the devil.

 

Afterword

This blog receives one or two offers a year from people wishing to sell their kidney or transplant tourism services with readily available organs for cash (some also offering finance at 2 percent!).  They are mostly from India, Egypt and Nigeria, or they don’t say.  I put them in my ‘limbo’ file, far away from the light of day.

Kidney Prices

 

Typical prices for a black (red) market kidney transplant in these transplant tourism countries.

 

 

Here’s a great 3 minute summary of the state of the rest of the world’s global organ trade:  Organ trafficking: Who’s buying and selling human organs?

If you are not now totally numb and spiritually exhausted  here are a couple of older reports that should do the trick:

The Body Snatchers (2012, 18 mins)

The Cruellest Cut – Pakistan’s Kidney Mafia (2007, 24 mins)

 

On dialysis and still living the dream!

A couple of months ago, Rob, one of the guys in our local BigD club at Greensborough took part in the annual Stockman’s Rally held in the upper Big River State Forrest near Marysville, Vic.

Here’s his story:

I was one of 500 entrants that took part in the rally.

It was an early start to the day leaving home at 05:30am (a shock to the system) with a mandatory stop at Healesville Bakery for a (small) coffee and then onto the rally for the briefing.

At the briefing everybody was informed that the event “Is not a race and everybody should enjoy themselves!”

At the start gate everyone had obviously forgotten the “This is not a race” instruction as there were around 500 bikes all in one area revving their engines eager to get going.

Into the 85km course and there was dust, dirt, trees and bikes as far as you could see (absolute heaven if you are into that kind of thing).

Rob rearing to go (though it's not a contest!)

Rob rearing to go (though it’s not a contest!)

Then I had my first accident: an overzealous rider tried to pass me on a track just wide enough for one, the other rider hit my handle bars and speared me off the track into a tree (luckily no injury). About an hour later on a rough and rocky incline I was doing pretty well and nearly made it to the top, I came around the corner and pretty much ran straight into another rider and his bike and I ended up falling off backwards and rolling back down the hill (still thankfully no injury).

After trying to get my bike back up and get the rest of the way up the hill energy levels were pretty low so I had a well-deserved rest, enjoyed the scenery at the top of the hill then off I went again to find somewhere else to fall off.

The rest of the ride although trying was CRASH LESS.

I made it back to camp and was more than happy to get off my bike and stand around for a while , have some lunch and drink, pack up and head home.

The next day I knew I was alive after counting all my bruises!

The organisers of the rally donated $5,000 to the Ronald MacDonald House and a good time was had by all.

Including us readers!

Reading that story in isolation, who could tell that Rob dialyses three times a week? No one!

Well done Rob, for proving once again that dialysis is the key to healthy living, not the end of it.

A little older in the shoulder

For the last few weeks I’ve had a sore right shoulder.  I think it started at the gym.

I have been going to a gym of some kind for years.  I did a little boxing in my youth (light welterweight) and played rugby for a while (no 8) in the navy and have always liked to keep fit.

But then my kidneys morphed into Mr Potatoheads, and the gym became a bridge too far.

Eventually I began dialysis, and as my health improved, I returned to the gym and slowly got back some semblance of fitness.

However, kidney disease does take its pound of flesh.  Literally.  Over the years I have thinned down, and I find it takes a lot of effort to rebuild muscles and gain or re-gain weight.  This tendency to slim down over the years is called Sarcopenia (Greek, meaning “flesh poverty”), the progressive loss of skeletal muscle mass, quality, and strength as we age (up to 1% per year from age 25).  Of course, it’s not usually noticeable until we reach our seventies, but long term BigD tends to make it happen a little earlier.

So when I go to the gym, after my warm up, I tend to focus on muscle building via resistance exercises with weights, levers and the chest press.  Alas, about six weeks ago, I was straining to chest press what was clearly a petite level weight when something snapped in my right shoulder.  Uh oh.  Not good.  I stopped and decided to focus on a less strenuous exercise, like going home.

Since then my shoulder has been weak and sore, especially when I extend or raise my arm.  But most disturbing is that it aches when I dialyse.  Once the needles are in, I assume the position: arm extended a little, resting on a pillow on the arm of my chair so the needles can be seen and the blood can flow freely (we all know the position).  But now, after a few minutes, my shoulder aches and carries on, forcing me to move it constantly, and search for a more comfortable position.

Julie suggested I go to a physiotherapist she had found very helpful when she had a sore neck.  So I made an appointment.  I went to her yesterday and it was a revelation.  I was sceptical that she could help.  I had already decided that it was just a torn tendon or something, that would heal eventually, if I gave it enough rest (self-diagnosis is one of my secret gifts, though not yet evidence based, and exceeded only by my gift for self-treatment – also unproven).

But no.  After a range of questions about what exactly I was doing when it happened, the angles and movements that cause the most pain, and measuring the how far each hand could reach up my back (my right shoulder’s performance was embarrassing) she had the answer, and the solution.

Over the years as I sat at my desk, using my mouse to type, read, respond and relax, my shoulder has gradually moved forward, shifting away from its socket, compressing some muscles and stretching others, in particular the one under my shoulder blade.  That muscle may have been torn by my gym work, but the fundamental problem was caused by my posture, especially when using my mouse, and leaning forward to study my computer screen.

After some fairly brutal deep tissue massage and instruction about the how and when of future exercises, I emerged from the physio’s studio (parlour?), blinking at the light of day and the profundity of new knowledge about myself.

My shoulder will need a little more attention from the physio, together with regular bouts of rolling around the floor on my newly acquired roller (like a reverse rolling pin, with me as the pastry).  But I have every confidence that it will get better, and I hope to soon return to that chest press with bolder shoulder!

Stop Press:  On last week’s health and fitness segment on ABC Radio Overnights program I heard Gordon Lynch (Associate Professor and Reader in Physiology at the University of Melbourne) talking about some new research that could help anyone whose muscles are slimming down before their time, by Doubling Your Protein Intake (within the limits set by your kidney doctor**).  Studies at the University of Arkansas suggest that older adults may need to double up on the recommended daily allowance of protein to maintain and build muscle. The added protein seems to trigger our sometimes lethargic muscle-building cells into action.

So with a little more protein and some time back at the gym, I may not all get to look like Arnie, but maybe not his runt cousin either.

**People with early stage kidney failure but not yet on dialysis are usually on a reduced protein diet, to lessen the protein breakdown burden the kidneys.  Protein intake is regulated based on the stage of kidney failure (I put off BigD for years on a diet of jelly beans – which I now can’t abide).  But once we go onto BigD, this diet restriction no longer applies:  dialysis handles the waste, and protein, protein, protein is the order of the day (every day!).

What’s it like to be on dialysis?

What is it like to be on dialysis?

In my last post I asked for your help in preparing a video for people who have just been told they need dialysis.  It’s a scary time and the first thing most people look for is information they can trust. Who better to provide that information that the BigD community?

I was asked for the video by MaryAnn & Rajiv in Bangalore, India.  They are putting together a range of videos covering dialysis and transplantation.  The video I have prepared has a short introduction then a series of 1 – 2 minute interviews where we asked a broad cross-section of people on dialysis four questions:

  1. How did you feel when you found out that you had to go on dialysis?
  2. How did you feel after you has been on for a few weeks?
  3. How long have you been dialysing
  4. How do you feel now about life on dialysis?

In the Indian video, the interviews are shown together.  But for the BigD blog, I have linked them as separate files, that you can pick and choose as the fancy takes you.

We videoed the interviews using an iPhone 5.  Some people were on dialysis, others not.  Most are in English, though there are also Hindi and Italian versions at the bottom of the page.

Obviously, if you want to make a video (in any language), please do!  Send the file to me via email (or Dropbox or whatever) and I will process it for YouTube add it to the collection.

So, for your viewing and listening pleasure, here is our first BigD Voice-of the-People video post.

Your 15 minutes of fame: What YOU think about dialysis

I had an exciting email from MaryAnn & Rajiv in Bangalore, India earlier this month:

My name is MaryAnn George. I’m a kidney patient who recently underwent a transplant. My husband Rajiv Mathew & I are making an educational documentary video for End stage renal patients.

Title : Combat Kidney Disease

Language: English

Target audience: Patient / family / caregiver of ESRD patients

Purpose : Guide patients on how to deal with the disease & treatment options

Broad overview of contents: Understanding Kidney Disease, Medication & Diet, Living with dialysis, Preparing for transplant : Finding a donor / Documentation , Transplant surgery, Aftercare & life after transplant.

We have been through your BigDandMe blog and feel that your experience will be able to provide some valuable information to other patients going through similar situations. It would be great if you could record a 10 min video (can even be shot on HD Phone camera) of yourself speaking about your experience.  You can speak either about any topics mentioned below or as you have mentioned in your blog – how to stay healthy, actions to take to win your life back or what’s happening in the world of dialysis and transplant.

Suggested topics:

  • How do you know when your kidney gets worse / symptoms?
  • Choosing your dialysis center
  • Dialysis experience
  • Home dialysis & care
  • Tips to prevent infection
  • Post Dialysis fatigue
  • Diet & exercise during dialysis phase
  • Managing work and family & life style changes during dialysis phase
  • Choosing your transplant doctor & hospital
  • Documentation & Paper work – advice & tips
  • Getting prepared – mentally/physically / financially
  • Transplant surgery & ICU stay
  • How long will recovery take? When can I drive/ Get back to work?
  • Guidelines to follow after surgery
  • Diet & lifestyle changes post-transplant

Please note, that this is a not for profit cause and aimed solely at helping other patients like ourselves. Kindly revert back if you are interested to be a part of this venture and I will share more details on the video specifications.

Thank you, MaryAnn & Rajiv, Bangalore, India

Great huh!

I think that a big part of the dialysis experience is the dread of starting.  And the big surprise is how well most people feel once they are established and are dialysing well.  So that’s what will be the subject of my video, and I would like to have as many BigD-ers involved as possible.

The first half of the video will be a few words about the worries, fears and dread of starting:

  • The needles
  • The big chunk of time I will lose every week for the rest of my life
  • My lost freedom, being tied to regular visits to the machine

followed by a what the reality of dialysis is like for most of us.

Then, it will be over to you, my BigD friends (dialysers and carers):

Take a piece of blank, white US Letter or A4 paper.  In landscape mode (with the widest part horizontal), using a thick, black felt-tip pen or marker, write your first name in the top lefthand corner, then in the center of the page: Dialysis to me:

Under that, 2 to 4 words that describe how you feel now about being on dialysis: angry, accepting, reluctant, enthusiastic, faulty or fortunate; tell it as you see it.

Then take a photo of you and your words, like this:

Dialysis for me?

Dialysis for me?

Don’t worry about making it a big production; as long as your message is readable.

Please send your photo to greg.collette(at)gmail.com by 16 January 2015.

I’m pretty sure that most of us, while we’re not euphoric about it, and would drop it if we could, still think dialysis is a pretty good deal: for a regular investment of our time, we get to live a reasonably healthy reasonably normal life.

No matter what we write, I think that this will be our message of hope to all those around the world lining up for the BigD the first time.

I’m excited and looking forward to seeing you and reading your messages!  Greg

Coming Soon: the new Number 1 thing to do on Dialysis

Before I begin, welcome to the holiday season! I wish you all a Merry, Happy or otherwise Delightful CABAH (Celebration-Accompanied-By-A-Holiday), and a restful break.

Like many BigD-ers, I love reading.  I love being taken away to exotic worlds with almost real technology, or interesting times in history, or tricky or stirring adventures or Very Big Picture books (the ones with almost no pictures) that help me understand how the world or civilisation or the universe works).  And when I have just had enough of the real world, or I’m tired and I want to slow down my brain, I’ll stroll through a TinTin or an old Donald Duck or Mickey Mouse adventure from the 60’s and laugh myself to sleep.

When I just want to be amused, with not too much thinking, I like nothing better that an exciting SF or fantasy movie, or, the equivalent of comfort food, a who-dunnit that solves itself in front of me.

On BigD the one big drawback of exciting books and movies is the rise in my BP that accompanies the thrilling and absorbing bits (who can sit calm through a Game of Thrones highpoint?). If I’m due for a BP check during these periods, I usually ask the nurse to give me a few minutes, and then I take a few deep breaths and say a few OHMs.  It doesn’t help in the slightest, but it’s worth a try and can head off a more detailed Code Blue alert.

So, what am I to do with the newest form of entertainment on the horizon, which is perfect for BigD?

A little background.  I am a regular listener to Download This Show, a weekly podcast of the latest in technology and internet culture from ABC Radio National.  They recently covered a new Virtual Reality (VR) system from a US company called Oculus, which will most definitely change the way we BigD-ers (and the rest of the planet) will spend a meaty chunk of our time.

With VR it will be possible for us to connect up to our machine, and then depart the material world, to explore the oceans, fly over Shanghai or to the moon, visit unknown worlds, explore our bodies from the inside, act in our favourite movie or play, visit people from across the world, and much more.  Three hours will hardly be enough time to scratch the surface.

Virtual Reality?

Virtual Reality is a computer-simulated environment that can reproduce physical presence in real or imagined worlds.  VR systems can recreate sensory experiences, which include:

  • Virtual sight and sound (via headsets and earbuds linked to computers)
  • Virtual taste (like the digital lollipop, an electronic device that transmits four taste sensations (salty, sour, sweet and bitter) to the tongue, developed at the National University of Singapore)
  • Virtual smell (a range of digital scent generating devices are under development most notably in the UK and Japan –that will hopefully do more than just rescue us from those dreadful bathroom wicks and sprays)
  • Virtual touch (something that’s been around for years, like with Flight Simulator joysticks that simulate the pressures you usually feel on the control yoke of a real small plane as you conduct manoeuvres, and more recently, exotic simulators for the sex industry)

Imagine combining all these technologies into a single Virtual Reality environment, and you will have a real-world virtual equivalent of the Star Trek Holodeck.  It’s not quite there yet, but it’s close.

And Oculus?

Oculus came from nowhere in 2012 with a VR headset called the Oculus Rift.  It caused a sensation.

The Rift creates a stereoscopic 3D view with excellent depth, scale, and movement.  Unlike 3D on a television or in a movie, this is achieved by presenting unique and parallel images for each eye (like the old sepia colored StereoScope picture below), in the same way our eyes perceive images in the real world, creating a much more natural and comfortable 3D world experience.

1903 SteroeScope image:  A spanking good time

1903 SteroeScope image: A spanking good time

The Rift’s release created a hugely popular developer community where smart software programmers created new virtual worlds, or updated existing games, all for use with the headset.

What does the Oculus VR world look like?  Hard to be exact without donning your own headset, but probably the best example of its impact on the first time user is the 2013 home video titled “My 90-year-old grandmother tries the Oculus Rift”, which went viral, with over 2 million views.

The concept and the potential for Oculus to change the way people interact with the world was so obvious that the company was purchased by Facebook in July this year for a lazy $2billion.

Before you rush out to buy one ($200 – $250), they have not yet released the Rift to us consumers.  They are continuing to build their development community until they have an Oculus Store full of VR Apps to sell for use with it.

However it is close.  Oculus has released a new developer version of the Rift, and jointly with Samsung, a mobile consumer version: the Gear VR headset (currently for developers, but available for adventurers (like me?   maybe!) at the Samsung website.  This is a clever unit that uses the readily available Galaxy Note 4 phone/tablet as the VR engine.  Unlike the Rift which is tethered to a computer, it is completely mobile.  Sounds perfect; though reviewers do note that it is not quite as realistic as the Rift.  At least not yet…

So how does the latest version feel?  Pretty terrific if this is any indication (I like demos # 5, being Superman and #10, the Rift roller coaster).

Of course, once the novelty wears off, continued use will rely on being able to DO things.  Hence the release hold-up until there are enough Apps/games to get people engaged long term.  But us non-gamers will need things as well, like learning new stuff (diving into Apps about history, science, fantasy, SF, travel – even about our bodies or dialysis from the inside, learning new skills, etc)  Or perhaps Apps that help us see complex things in new ways, like 3D interactive graphics of big data about health, finance, government-collected metadata or any other that helps us understand how our world works.

When these things arrive, without doubt, the Oculus Rift or one of the inevitable spinoffs will be part of my dialysis scene in the near future.  And once that happens how long it will take for this functionality to be built-in to the dialysis machine?  Perhaps a little longer (Gambro, Fresenius, et al please note!).

The only problem I foresee is my excitability and its effect on my BP.

But I think I have the answer:  Serenity Now!: a VR meditation App that takes me to a serene green forest or beside a calm sea where not much is happening.  Or if I can bear to take off the headset, maybe I will try some real meditation?

Nah.  I’ll think I’ll stick with the Virtual Reality version.

User Review: AliveCor Heart Monitor App

Heart attack is one of the most common reasons we BigD-ers shuffle off this mortal coil.  Not because the kidneys have anything to do with managing our heart chemically, but because without kidneys we fill up with fluid and raise our blood pressure, putting stress on what is usually a pretty reliable ticker (heart failure is often the cause of death for people who decide not to go on, or give up dialysis).  Constant fluid overloads over a long period gradually wear out hearts, they get tired and emotional and without regular maintenance, become unreliable, or worse.

My 19+years off and on dialysis (mostly on) makes me a paid-up member of this group.  The main way my heart plays up is Atrial Fibrillation (AF), where it beats out of rhythm.  AF can be anything from mild (I hardly notice it) to severe (where because it is doing such a lousy job of pumping blood and the oxygen it carries that I find it hard to stay upright).  When in AF, my heart beats faster (to keep up the blood flow), but no matter how hard it tries, my blood pressure is always low.  In fact, if I’m in the early stages, a fast pulse and low BP when I am clearly above my base weight are great indicators that I’ve gone into AF.

Of course there are side effects (besides being slower than a three-legged turtle).  Because the heart is doing a lousy job of moving blood around, it can pool in inconvenient places, and even cause clots.  Not good, but only disastrous if that happens in the brain (the most common cause of a stroke), or the heart (causing a heart attack).  So if I’m in AF for more than a day or two, I take Warfarin, (Coumadin, Jantoven, Marevan, Uniwarfin) an anticoagulant, to minimise clotting.  This in itself has an effect for BigD-ers: we must ensure that clinic staff know we’re on it so they can use a smaller amount of Heparin during each run, and I wait longer for bleeding to stop after the needles come out.  This also applies to any cuts and scratches I inflict upon my body parts.

So the ideal situation is to not go into AF, or to catch it early.

Stopping it before it starts

The best way to stop it before it starts is to visit a cardiologist regularly.  The cardiologist I go to is excellent.  His stated aim is to keep people alive longer than we would be without his help – an excellent objective say I.  And he’s done a sterling job so far.  I’ve had AF for more than 10 years.

In the early days he zapped my heart back into rhythm with those electric paddles we have all seen on our favourite TV show (anyone remember Dr Ben Casey? Sadly I do… but I digress).

Since those early days, he has had me taking two heart medications:

  • Metoprolol, a beta blocker (it blocks the electrical impulses that pass to the lower heart), that reduces heart rate and AF, and the force of heart muscle contractions to lower blood pressure. Since starting, I usually score a heart rate of around 55 BPM – much the same as all the athletic types in the family.  Since I choose not to share how I achieve it, most people think I am incredibly fit, which I see this as a positive side effect
  • Flecainide (Tambocor), which also blocks electrical signals in the heart that cause an irregular heartbeat, is used for serious AF (I used to take Amiodarone, but it gradually became less effective, so I was weaned off it and onto it’s big shot replacement).

These two have mostly kept AF at bay.  Once in a blue moon I forget to take a dose, and AF can make a tentative appearance.  But once these little white friends are back into my system, it fades away.

Catching it early

This was a little more difficult until recently.  Apart from feeling “out of rhythm” and confirming it by checking my pulse (easy with a fistula), my main measure was the low BP/fast heart rate/above base weight I mentioned previously.

That was until I got my hands on a miracle machine.  It came about like this.  Julie went to see our No 2 son, Liam in London month or so ago.  One of the social events he arranged was to get together with Malcolm, one of his excellent friends who stayed with us when he was a student doctor on placement at the Royal Melbourne Hospital.  The world turned, as it is wont to do, and he is now Malcolm Finlay, Consulting Cardiologist (yes way!).  He was trialling a new mini ECG/heart monitor for the iPhone, called the AliveCor Heart Monitor.

He demonstrated it and to her and obviously thought it a valuable tool.  It is a small metal and plastic plate about the size of a business card.  You place two fingers at either end, on the metal pads and hold it close to the iPhone while it is running the associated App.  It immediately picks up the signal from the plate and displays a heartbeat signal comparable to readings from Lead I of a standard ECG.

(Other signals are available: a left knee-right hand combination gives me a Lead II signal and placing it on the lower left side of the chest, below my enormous pecs, mimics the signal from the Anterior Precordial Lead,)

One of my AliveCor ECGs on the website

One of my AliveCor ECGs on the website (click to view)

The App records the signal for 30 seconds, does some analysis and saves it for later use by the user’s cardiologist.  The App also tracks medications, symptoms and lifestyle activities (like drinking coffee, or more rigorous activities).

Julie went bug-eyed thinking of me (quite understandable) and of how valuable it would be for tracking my AF (I am also a pretty enthusiastic App and tech user).  Needless to say, she called me and told me about it, and when I picked her up from the airport a week later, she took one out of her bag and handed it over.  Bliss.

I managed to wait until I got back to the car before my first go.  It’s as good as it sounds.  I joined the AliveCor user’s website, where my ECGs are stored as PDFs (see pics) and am setting up an email link with my cardiologist for the times my heart gets the wobbles, for more immediate feedback.  All the key bits, BPM, ECG numbers, symptoms, medications are also graphed for trends (quite satisfying).

One of my early morning ECGs: definitely in AF!

I had an AF episode a couple of weeks ago, and I took ECGs during the hour it lasted, and after.  Since all was well once my heart returned to rhythm, I have printed them out and tucked them away in an envelope, ready for my next visit to my cardiologist (no, not anal at all…).

So, my unbiased view of this excellent App/unit after about a month of use: just wonderful.  It is easy to use, totally portable (I have taken ECGs in the car (parked), on the train, at restaurants, even in the smallest room in the house).  It’s free (though you can buy analysis services on the website) and immediate, with a link to advice and help an email away.  Ah the peace of mind.  Feel the serenity.

Note: the AliveCor Heart Monitor is not cheap.  Last time I checked it cost between $150 and $300 depending on what specials were available.  But this is my heart I’m talking about, not a new set of shoes.  Definitely worth it (and while I’m sure it or competitors will get cheaper over time); why wait?

Five stars

Five Stars! – iTunes and Google App store

Update!

I just received news from AliveCor about new models at reduced prices:

50% thinner and 40% lighter, the 3rd generation AliveCor Heart Monitor provides the clinically-proven quality you have come to expect in an even sleeker, lower-profile design. At only $74.99 USD, we’re making it easier to bring heart health knowledge and peace of mind to even more patients with known or undiagnosed heart conditions.”

Almost down to Christmas present pricing!  Go to store.alivecor.com for more details and to order.