Fistulas and fatal haemorrhages: what to do

In February 2010, I wrote Dialysis: death via a damaged fistula, which was about Maya’s father, who died when his sore and swollen fistula burst in bed and he bled to death.  At the time I asked some of the experts I knew about this and all said it happens, but was very rare.

However, over the following 18 months I had a steady flow of posts about other people who had died or came close to death from a leaking or haemorrhaging fistula, and it started to look a lot less rare.

In August 2011, I wrote: Dialysis, fistulas and fatal haemorrhages setting out some expert opinion on how to spot the danger signs and action to take to prevent a rupture.

Several people wrote back, saying how they had taken action and prevented their loved one’s fistula from rupturing.  But still, the horror stories keep coming, with more than 30 deaths and near misses posted over the last four years.

Most people posting were still unaware that ruptures could happen and had zero training on what to do if a rupture occurred.

This seems like pretty important information, which should be posted in every dialysis unit and office, everywhere.  So in an effort to get the word out, I have done more research on three areas:

  • Just how common are fatal haemorrhages?
  • The best way to avoid a rupture and
  • What to do if one happens.

Until 2013, apart from the odd passing reference, not much had been written about fatal fistula ruptures.  Presumably most people assumed they were a rarity and not worth the effort.  Then Lynda K. Ball, MSN, RN, CNN, the Vascular Access Specialist for Fresenius Medical Care in Washington State published the excellent Fatal Vascular Access Hemorrhage: Reducing the Odds, in the Nephrology Nursing Journal, of the American Nephrology Nurses’ Association.

Though written for nurses rather than for the proud owners of fistulas, it is right on the money: “..how to recognise accesses (fistulas and grafts) at-risk for Fatal Vascular Access Hemorrhage (FVAH) and implement strategies to decrease FVAHs” (you know the problem has gone mainstream when it gets its own acronym).  For good measure, she also throws in the best technique for stopping the bleeding if the worst happens.  It’s a good read (though the pictures are a bit gruesome).

Here are some highlights.

Firstly, two FVAH factors listed in the paper jumped out from the page:

  1. Fistula/access-related complications had occurred within six months prior to bleeding deaths.
  2. In some states, up to 80 per cent of rupture deaths occurred at home.

We’ll come back to these factors shortly.

How common are fatal haemorrhages?

It seems that no one actually knows for sure, but they are more common than most people imagine.

In the US, End Stage Renal Disease Notification of Death CMS-2746 forms indicated that between the years 2000 and 2006 (the most recent national data available), there were 1654 fatal vascular access hemorrhages.  This represented about 0.4% of deaths of patients on hemodialysis.  However, these are only reported deaths and are considered an underestimate.

It could certainly be double that figure, say 0.8 per cent.  That seems a small number until you realise that there with about 500,000 people on dialysis in the US, 0.8% is 4,000 people.

FVAH deaths don’t seem to be tracked separately in most other countries.  This blog finds out about between five and ten a year from shocked relatives looking for answers, but it is by no means a definitive list.  Posts come from as far apart as the US, Estonia, New Zealand, India and 170-odd other countries around the world.

There does not seem to be a trend by country, rather it is much more local: it seems to depend on the quality of the unit.  In a well-run unit, fistula/graft haemorrhages really are rare.

Which brings us back to the two factors mentioned earlier.

The best way to avoid a rupture

Be fistula fussy

  1. Fistula/access-related complications had occurred within six months prior to bleeding deaths.

Fistulas don’t weaken to a point where they haemorrhage overnight.  The fistula slowly becomes weak, fragile and weepy due to infection, stenosis (reducing blood flow and building pressure) or an aneurysm (the fistula wall balloons and becomes thin).  In other words, red and sore fistulas that are infected, blocked or have weak spots that fail to re-seal after needling are warning signs of impending rupture for both dialysis staff and us.

From the stories posted on this blog, in well-run units, fistula/graft haemorrhages are rare.  Staff check everyone’s fistula regularly and if they see a problem, they act: either with antibiotics and treatment, or a referral to a hospital or vascular surgeon, to examine and rebuild the fistula.

That doesn’t make it any less traumatic for the families when it happens, but mostly, unless you have some specific problems with your graft or fistula, it is not something to lose sleep over.  Most fistulas and grafts are solid and robust.  Fistulas grow slowly and are usually quite firm and elastic.

Be fistula fussy: if your fistula has any of these warning signs tell the unit staff and ask for medical attention.  Don’t take no for an answer.  If they are slow to act, tell them that you consider the problem life threatening.  Make sure they do something.  Tell your carers and get them to tell the staff.  Tell your doctor.  Make a fuss, but get it fixed.

What to do if a rupture happens

Finger press; arm lift

  1. Approximately three-quarters of the deaths occurred at home, in assisted living, or nursing homes.

You cannot assume that medical care will always be at hand for emergencies.  If your fistula starts to bleed you need to know how to deal with it, even if just for a few minutes.

The easiest and safest way to control the bleeding is to:

  • Immediately apply direct pressure over the site of bleeding with a single finger (or more if the rupture is bigger) and
  • Raise the ruptured area of the bleeding above the level of your heart, to make it more difficult for the blood flow to reach the ruptured area due to gravity. (To see how effective this is, raise your fistula arm up above your head now – the blood will quickly drain away from your fistula.)

Do not take time to look for gauze or a tourniquet – these can hide the bleeding area and you may press on the wrong spot – put your fingers directly over the ruptured area and apply pressure immediately, then lift your arm.  Hold the pressure on the site for at least 10 minutes without peeking.

Once things are stabilised, call for medical help.

If someone is with you, they can call while you press on the site (or vice-versa).

 

Pass on this information: print out this or Lynda’s paper and put it on your unit’s noticeboard.  These strategies will help avoid fistula ruptures and save lives – yours and mine.

eHealth – What’s in it for us?

Two reasons I worked through the eHealth MOOC I wrote about last time were to find out just how big the eHealth movement is and where it was or can be successful in making life easier providing better health outcomes for us BigD-ers.

Firstly, it’s big, very big.  Most countries are setting up or designing an eHealth framework of some kind or other.  They include the usual suspects, like Scandinavia, the UK, most of Europe, Hong Kong, Singapore, Australia and New Zealand, and parts of Canada and the US.  Thankfully much of the rest of the world is also on the job, like Russia, Brazil, India, Pakistan, the Philippines, Mexico, Turkey, Nigeria, Israel, Iran, Saudi Arabia.

There are also at least two eHealth systems developed and run by Non-Government Organisations (NGOs):

  • OpenMRS, developed as a collaborative open source project in the US, which is in use in at least 23 developing countries (mostly in Africa), and
  • United Nations Relief and Work Agency (UNRWA)’s e-Health system developed in-house in 2011 to address the administrative burden of millions of patient is the Middle East region (Lebanon, Gaza and Westbank, Syria and Jordan).

These two systems are great examples because they were designed and built mostly by volunteers to meet their core need:  a single, comprehensive, mobile medical record that is available wherever the patient goes.

Most eHealth frameworks are based around the World Health Organization’s National eHealth Strategy Toolkit, which is a roadmap and toolkit for developing or revitalizing a country’s eHealth.  The Toolkit has three steps:

  1. Develop a national eHealth vision that responds to health and development goals
  2. Develop an implementation roadmap that reflects country priorities and the eHealth context.
  3. Establish a plan to monitor implementation and manage associated risks

I rather like Israeli definition of national eHealth: To achieve a universal access to health care services leaving no one behind.  Short, sweet and inclusive.

That’s the theory.  So what should/could the ideal national eHealth framework deliver to us BigD-ers?  Well, we are high-maintenance individuals, all with similar healthcare needs.  We use at least one health service at least three times a week, often more.  So as an example, here some of the eHealth services I’d like:

  • eDialysis: that provides dialysis performance details after each session, with opportunities for contact with dialysis clinicians for queries and support
  • eResults: online access to all my test results, blood and body fluid tests, biopsies, ECGs, MRIs, and all other medical imaging, with facilities to email the associated clinician for advice/discussion or to set up an appointment (for a fee)
  • eMedications: a list of all my current and past medications, with side effect details, would be useful
  • ePrescriptions: prescriptions generated in the doctor’s electronic prescribing system and then transmitted through a secure network to the national e-prescription database. While only the prescribing physicians and pharmacy personnel have access to the prescription, I can then have my medication dispensed at any convenient time and pharmacy
  • eReferrals: especially for renewals, simply going online and requesting a new referral, which would be emailed to my specialist. I’d be happy to pay a small fee for this rather than us both blowing precious time (and money) on a full visit
  • eEmergency: An on-my-person record of personal details, next of kin, ailments, medications, prescriptions, health insurance, and emergency contacts
  • eHealthInsurance: readily available, electronic proof of health insurance
  • eAppointments for dialysis: being able to set up my treatment times online, to swap times and even book times in other dialysis clinics electronically
  • eAppointments for other health care services: setting them up online with my nephrologist, general practitioner or family doctor, clinics/hospitals, nurse practitioner, pharmacist, physiotherapist, psychiatrist, clinical psychologists, occupational therapists, dietitian – the lot
  • eVaccination: a system that tracks my vaccination history and reminds me when we need another (currently I am more likely to get a vaccination reminder for my dog!)
  • eDonor: if there are any useful bits of me left when I go for the big sleep, the fact that I would donate them should be both with me (on my driver’s licence) and online somewhere
  • eMyHistory: secure online access, ideally in timeline and calendar formats, to my patient records (about my hospital visits, transplants, infections, heart problems, etc), specialist visits, family doctor visits (in fact, from all the people listed in my eAppointment dream above)
  • eDNA: access to my genetic profile, showing my health risks, inherited conditions, drug risks and general traits. I want to know if I have any vulnerabilities or inherited diseases.  This would also be available for the transplant team to help with matching.

Most of these are already available somewhere but in isolation.  I’d like these on my smart phone please, preferably as a single App.

This list (except for the eDNA; it will probably be on next year’s list) is what eHealth is aiming to deliver.  Most countries are starting with the easy stuff (eAppointment and ePrescription are popular) because they can be developed relatively quickly as stand-alone projects.

Other countries (including Australia) decided on the big bang: to develop a national eHealth record system and then convince patients, clinicians, hospitals and health care services generally to use it.  Without exception, this approach has been very expensive and very, very difficult, especially in countries with a mix of public and private healthcare providers; to the point that most have failed on the first try.

The Scandinavian eHealth system is the most advanced because they started earlier (a couple of decades ago) so they have the most scar tissue and the most success.

But whatever the track record, the expected benefits from eHealth keep it firmly on the agenda in every country, including yours.  To find out how it is progressing, just Google: (your country) and eHealth.  You may be surprised; if not now, soon.

ps: I’ve ignored the many concerns about security and potential for misuse of a centralised health record about each one of us.  They certainly exist, but must wait for another day.

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