Do you know the Nine Inch Nails’ song “Hurt” sung by Johnny Cash?  It is a very moving and disturbing song about the effect on drugs on the singer.  All of us BigD members can especially relate to the first few lines:

I hurt myself today
to see if I still feel
I focus on the pain
the only thing that’s real
the needle tears a hole
the old familiar sting
try to kill it all away
but I remember everything

For the BigD, especially when we’re new to it, the needles loom large.  But they need not.  One of the ways you can cut needling down to size is buttonholing.

What is buttonholing? For dialysis, it has nothing to do with sewing machines, or grabbing someone’s attention.  It is a powerful technique for getting the needles into your fistula with minimum pain and minimum damage.  I have written about it several times in earlier posts, but it is worth revisiting.

Chris, our unit manager is on sick leave, and we have been fortunate to have the country’s foremost experts in buttonholing, Anna Flynn fill in for her.  Anna and her colleague Annette Linton presented a slide show on buttonholing to the Renal Society of Australia in 2008.  It showed the what, why, when, where, who and how of buttonholing, and was so successful that it has become a key buttonhole teaching aid for both renal staff and for we members of the BigD club.

Anna and Annette’s presentation has some great shots of what the buttonhole track looks like in the fistula wall, as well as some quite graphic ultrasound images (fortunately in black and white, so not too gruesome).  Check it out:

Basically, buttonholing is inserting the needles into your fistula in the same spots, at the same angles every session.  The needles gradually wear a track through the skin and through the fistula wall.  After about two weeks, the track is so clear that you can switch from sharp to blunt needles, and it can become almost painless.

Buttonholing is not new.  I started using it about 12 years ago, after reading about its success in Europe and having it recommended by the then unit manager, Anna.  I must say I hesitated. To me it was counterintuitive to constantly use the same holes.  How would it ever close over and repair itself? Maybe it would pop open if I lifted something heavy?  What about in the shower or swimming, maybe I would wash off the scab and open the hole.  They seemed like reasonable fears to me.

But it clearly didn’t work that way for others, so I gave it a try.

I soon found that the body doesn’t work like that.  It seems to get used to the needles and, like with other parts of the body, creates the equivalent of a callous, or thick scar tissue to form a track into the fistula.  Since the track is usually less sensitive, there is less pain.  Also, the track closes quickly once the needle is removed and a little pressure applied, so bleeding stops within a few minutes.

I especially like using blunt needles – there is no chance of a blowout, they are just not sharp enough to push a new hole through the fistula wall.  In fact, unless to pick off each scab before you insert the needles, they won’t even go in.

Buttonholing works best when you do it yourself.  While sticking needles into yourself sounds a little outrageous, it’s not especially difficult.  The first time is the toughest. Ask someone you know needles well to talk you through it, and then take plunge.  You’ll get better and better as time progresses.  DIY also eliminates the stress of wondering if the person needling you will make a mistake.  You won’t make a mistake, because you can feel exactly where the needle is going.

So, you may still hurt yourself today getting those needles in, but with buttonholing, it’ll only hurt only a little.

I have posted a little about keeping your body fit on the BigD before, but nothing about exercising our most important organ, the brain.  I have just read a life-changing book: The Brain That Changes Itself, by Norman Doidge.  I very much enjoy reading about the brain, how it works, what affects its performance, what motivates us, how and why we choose.

But this book took me to a new level.  Doidge explains through real-world examples and studies, how our brains are continuously changing, no matter what our age.  It begins by showing how people who have lost parts of their brain through stroke or trauma can with training, have other parts of their brain take over the lost roles.

He also shows that our brain, like the rest of our body, is dominated by the Use it or Lose itrule.  We all know this from experience: if you stop speaking or writing another language, or playing an instrument, pretty soon you can’t remember words or notes and you have to do a little relearning.  This is because the unused neuron processing power has been reassigned to somewhere else.  Even for parts or your body, like if you cover an eye, or bind a limb for a period, the neurons associated with controlling those parts stop getting stimulated, and are fairly quickly recruited or absorbed by other, busier parts of the brain.

Happily, the reverse also applies: when you practice the language or the music, or remove the cover or binding, the brain fairly quickly reassigns the neurons back to that function.  Doidge talks a lot about techniques some very smart people have developed to preserve the brain’s flexibility and extend mental life spans.  Mostly this is done through exercise – brain exercise.

I know my brain has slowed down a little since I started the BigD.  Some of this I put down to the physical difficulties that come with chronic kidney failure, some to getting a little older.  But how much had I slowed down, and could some of these exercises speed me up again?

I decided to give it a try.  There are several brain exercise products available that have been proven to increase IQ, fill in gaps in performance and generally rejuvenate brains.  Doidge devotes a chapter to Michael Merzenich’s Posit Science ® Brain Fitness Program (Google it for a local agent, or Amazon).  It focuses on sounds, words, language and memory.  It is pricey, but, hey, we’re talking about improving your brain!  Using it for about an hour 3 times a week for 3 months has been shown to amongst other things, improve memory by an equivalent of 10 years!

I was about to buy it when I discovered Lumosity, a brain games developer that has a range of brain training courses that are also available on the iPhone.  It’s not Posit Science, but it’s a good starting point.  The courses bundle several games of different types into groups that you work through each day.  Games work on brain areas like speed, memory, attention, flexibility and problem solving.

I have been playing these games now for about two weeks, and while it is fun, it has also made me realise how much slower I had become.  At the moment, if my brain was my body, I would be one of those slightly tubby guys with man-boobs.  After each game it tells you where you are amongst all other players: my speed brain percentile began at 60% and the latest is 68%.  I’m not telling you how I compared for arithmetic.  The good news is that just like getting your body fit, brain improvement is relatively quick and noticeable.

Lumosity is a cheaper too.  There is a 5-session free trial, then it costs between US$6.70 and $15 per month.  You can use it with your PC or Mac, but I like the iPhone access: I can exercise on the train, waiting for meetings or the doctor, wherever.

One other thing that becomes clear quickly when you start regularly exercising your brain: brain function is dramatically affected by how you feel: if you slept badly or you feel a little down or grumpy, your scores suffer.  If you have had a good sleep and feel that all’s right with the world, you can ace the games.  Sometimes.

Once I have exercised enough to get rid of my mental man-boobs, I will put my name into the user group so I can have a friendly competition with other users.  Maybe you’d like to join me?

(I haven’t forgotten Posit Science.  I will save that for when I graduate from Lumosity!)

Salma from Leeds left this comment through the week:

I have just read Maya’s story and I am devastated, I really do feel for her because at this moment my dad is in the same position but thank god he has not passed away, after staying in intensive care for up to two weeks thankfully he is a little better now but still not the same as before and by the looks of it he will never be the same again because of this blow up of his fistula, I would like some help maybe information about what is happening, me, my mum and all our family are going through such a hard time and it blew up because of the NHS staff in Leeds. If u could get back to me I would be more than grateful. Thank you. Salma (Leeds)

Here is my response:

Hi Salma, thanks for your story.   While there is no magic wand, things are not as bad as they seem.  Like they say, the antidote for fear is knowledge, so hopefully I can help a little by giving you an idea of what to expect.

Firstly, while bursting a fistula is quite rare, as long as it is caught early, your dad should recover completely, given time and no more dramas.

What should you expect?

The most likely course of action will be that a vascular surgeon will sew up and close off the damaged fistula and put in a temporary line or a permcath (permanent catheter), which is usually connected to the jugular vein in the neck so that dialysis can continue uninterrupted.  A permcath can stay in place for up to 6 months.  This will ensure that your dad stays healthy while he recovers.

One advantage of this line is that there is no needling; they just connect the machine to the permcath and begin dialysis (sweet!).  There are disadvantages: it can be prone to infection and requires a higher level of infection control during and after dialysis, regular dressing changes, etc.  For the same reason you can’t get it wet, so it is fiddly when you want to have a shower.

Once your dad is stabilised, the surgeon will review the various options for creating a new, permanent access site for ongoing dialysis.

To understand the options, let’s talk about how a fistula is created. Each arm has three arteries that could be used to create the fistula: the radial and the ulnar in the forearm and the brachial in the upper arm.  So if his fistula was in his forearm, there are three other sites that could be used to create a new one: same arm, upper; other arm, forearm; other arm, upper.  If you have looked around your dad’s dialysis centre, you will probably have seen the whole mix: fistulas on the left and right, lower and upper arms.

One of the newer tools available to the surgeon now is vein mapping, where the radiology department of a hospital scans the arm and produces a map of the veins and arteries.  They do this by injecting dye into a vein and recording the path of the dye as it is dissipated through the arm using an ultrasound.  I had a very similar procedure recently and it is not particularly painful or traumatic.

The surgeon uses the map to find a good artery-vein combination, usually with a vein that is fairly deep in the arm.  The surgeon then operates to join the artery to the vein.  The high-pressure artery gradually expands the low-pressure vein to create the fistula.  They choose a deeper vein so that as the fistula grows it is protected somewhat by the surrounding flesh in the arm.  The new fistula may take up to 6 months to grow into a functional access.

If the surgeon can’t find a suitable vein, she may choose to install an artificial vein, called a graft.  The graft is usually made from a Gortex tube large enough to act as an access point pretty well immediately after the wound heals.  There are a couple of disadvantages:

• The body often sees it for what it is, a foreign body, and tends to try and block it by blood clotting.  People with grafts often take aspirin every day to minimise the chance of this happening.
• The graft can get infected, especially if staff and the graft owner are not meticulous about infection control.  Also, since it is a piece of inert material, it won’t get sore like a fistula infection, so there are no symptoms until the infection is well advanced.

However a graft is a good option.  Many people on the BigD have grafts in place for years.

The arms aren’t the only places where a surgeon can create a fistula.  Some people (especially diabetics) may have peripheral vascular disease, which makes many veins unusable.  Other options include creating a fistula in a leg, or even in the neck.  These are not common (I have never met anyone with either).

Finally, many people have more than one fistula through some kind of failure (though usually not for such a dramatic failure as your dad’s), so your dad is going down a well-worn path.  I know it is a horrible time for you and your family but I’m sure you will get through it.

Please feel free to ask for help or support at any time.  Let me know how things go.

I hope this helps a little.  Keep in touch.  Greg

Krishna emailed me last week with a work/life/travel query that I thought may be of interest to other BigD members.

My name is Krishna, I’m 24 years old and have been on dialysis after a failed transplant from my mother for the past 2 years.  I live, study and dialyse in Chennai, India. I accidentally chanced upon your blog “BigD and me” and it is such an interesting outlook on dialysis! I am studying to become a lawyer, and found your blog when I was looking for dialysis options in Hong Kong, where I hope to be travelling to in April 2011 for a law school moot court competition. I can easily relate to all that you say on your blog and frankly, it inspires me to be a better and a positive person in general.

I have a few questions about dialysis in Hong Kong, which I thought I could ask you via email:

1. How much did it cost you per session at HK?
2. How much in advance did you contact your centre?
3. What were the centre timings?

Also, on a related note, I notice you travel quite a bit on dialysis. How do you go about arranging for dialysis sessions in foreign countries? How do you know the good centres from the butchers ? I expect to be travelling to Vienna, Austria (as part of the same competition) and to London for an internship with a law firm, but I am quite flummoxed about setting up dialysis sessions in foreign places. Do you have any tips?

Finally, how receptive are employers to adjusting work schedules to patients who are on dialysis? I am hoping to start my career as a lawyer in about 2 years’ time, and I would like to know if there are legal provisions in the UK, US and other countries which aid in securing adjustable work schedules for patients on dialysis. Are you aware of any?

Please keep writing Greg! You’ve gotten yourself another faithful blog follower .

Warm regards, Krishna

Krishna it was great to hear from you and I am very pleased that you enjoy the blog.

To answer your questions re Hong Kong:

1.      How much did it cost you per session at HK?
The renal unit was at the Sanatorium & Hospitalat Happy Valley. It cost about HK$3,000 per session, this includes the cost of a consultant visit.

2.      How much in advance did you contact your centre?
I made arrangements about three weeks before my trip.  They speak English and respond quickly.

3.      What were the centre timings?
The centre is open from 0700 to 2000.  I started each session around 0830.  They seem pretty flexible.

Regarding travel and choosing a reliable service, Western Europe is fine.  Holiday dialysis is a well-worn path.  One drawback is that the services are usually quite expensive, sometimes up to US$1,000 per session.  Ask before you commit.  For contact details, check out http://www.globaldialysis.com/.  They have a great network.

Travel on dialysis is no great burden.  You are already used to the time commitment, and it can be quite fun seeing all the different approaches and techniques as you travel (not to mention the people!).  The cost is a pain, but I think the best thing to do is think of it as part of the travel cost for BigD members:  an unavoidable expense.

Regarding work and the BigD, I don’t know of any legal provisions for employers to smooth the job hunt but I do know many people who work on dialysis.  While employers reactions vary, most are pretty flexible.  The ideal approach is to share the load.  If you dialyse three times a week, maybe set up one session after work hours, one that maybe starts an hour before you would normally leave work, and one early in the day (say 7am or earlier) that allows you to start work by lunchtime.  Or select other quiet times if those hours are busy.

Let your employer know that you dialyse, tell them that you will try  to minimise the impact, and that maybe instead of working 40 hrs per week, you can work 30 or 35 hrs.  Also, you can always read work stuff, take calls and answer emails while you are on the machine.  One of the guys in our unit was an operations manager.  He was always communicating, answering queries, organising people.  He picked up the phone as soon as he was connected and didn’t put it down again until he was coming off.  He was amazing.  You will find you own level.

There are other options, including night dialysis.  This has real benefits, and once you are used to it, it frees you for work (and play) through the day.  I will write more about the latest in nocturnal BigD in my next post.

The key is not to hold back.  If you want to travel, give it a go now!  It you are worried about employment, contact prospective firms now and ask.  I am sure you will be surprised how far and fast things will move for you.

Good luck with the competitions and keep in touch. I hope we meet in some distant renal unit sooner rather than later!

Regards, Greg

I’ve always enjoyed Science Fiction.  For two reasons:  One, it’s hugely escapist, taking me from a rainy afternoon on the couch to an alien settlement on the frontier of our federation or to a future where mental man simply thinks of something to make it happen.  Two, it expands my thinking with new ideas of the possible (or desirable). Who wouldn’t like to download their brain into permanent memory, or live for centuries free of the constraints of the body?

Another powerful Sci Fi benefit is that way-out ideas often become reality within a few years. Asimov invented the term “Robotics”, now they are manufacturing cars; Princess Leia asked Obi Wan for help via a projected 3D hologram, and one is due within a few months; scientists have actually started teleporting things (very little things) from one place to another, just like Captain Kirk; genetic manipulation is a reality.

It’s in this spirit that I have decided to create a few visions of future BigD.  There seems to be very little new in the dialysis department, and it’s time we had a few ideas to hang our dreams on.

So, I’m thinking short term – the next 10 years and medium term – the next 15 years.  And long term?  Things are changing so quickly, we may be a different species by then.

Short Term

We are making great strides in biomedical science, but I think we will still be cleaning the toxins directly from our blood in 10 years.  The two big downers of dialysis currently are the time it takes and the needles (in that order).  These are related problems: the time it takes to clean the blood depends on how much we can clean at one time.  With needles, and a fairly slow pump speed, the answer is not much.  Here are a few ideas that get rid of the needles and/or cut down the time it takes:

My Blood Bank. Early in 2013 we will trial complete replacement:  soon after, each of us BigD club members build up and store an additional 5.6 litres of blood (or borrow it from a blood bank) and in each BigD session we simply run out the old blood and run in the new blood.  The old blood is cleaned later, while we are living our life and we repeat the exchange at the next session.  Estimated time: 30-60 minutes.

Mum’s the Cord. In 2014, we get bigger access.  Before we were born, we exchanged our blood continuously with our mother via the umbilical cord.  What happened to that connection?  We re-create it and tap directly into the aorta for a high-speed clean.  Estimated time: 60 minutes.

Socket to Me. Permanent access sockets have been tried before and were rejected due to infection problems.  However in a successful variation, the current approach to getting started with buttonholing is to insert a plug into each needle hole for a couple of weeks, so that button hole and tunnel formation are accelerated.  Once it is formed, the plugs are removed and buttonholing can begin.  Around 2015 we will expand on this technique by growing some special sockets with cartilage “connectors” from our own tissue on a biodegradable scaffold (remember the mouse the human ear on its back)?  Maybe we will also grow the needle connectors…  Estimated BigD time: still too long, but, look, no needles.

Swallow this Pill. Around 2015, biochemists will have joined the party, by creating a chemical cocktail that identifies and binds to blood toxins to create large, easily filtered molecules.  Dialysis uses a dializer impregnated with a chemical to attract the molecules in a single pass.  Estimated time: 60 minutes.

Medium Term

By the early 2020s we will have worked out a few less intrusive ways to clean our blood.  No needles, no time sitting at a BigD machine.  Treatment will be continuous, just like our kidneys used to do it.

One small prick for mankind… In an old Star Trek Original Series Movie, Dr McCoy travelled back to the Twentieth Century and met a woman in a wheel chair.  When he finds that she is headed for dialysis, he says “How barbaric!” and gives her an injections that fixes the problem for good.

What was in that injection?  Intelligent nanofilters. Millions of the molecule-sized nanotech filters are injected (or more likely infused through the skin and make their way) into the bloodstream where they identify and bind to toxins in the blood.  They then travel to the gastrointestinal tract, reacting with the mucous lining to form large inert molecules that are eventually excreted from the body.  The nanofilters then return to the bloodstream and repeat the process.  Nanofilters can be programmed and controlled remotely and can be replaced when required.

Cell Me My new Kidney. About 2022 the first successful stem cell kidney will be grown in a lab and transplanted into a happy recipient.  By 2025 stem cell kidneys, from our own stem cells will be the standard treatment for End Stage Kidney Failure.  Stem cells will initially be embedded by surgery, but eventually they will be transported to the replacement site via nano technology carriers.

So, the New, Better BigD vision begins.  These ideas have been floating around in my head for a while.  Some may be possible, others maybe not.  But let’s start putting ideas down: everyone, everywhere.  And hopefully in the Short Term, a practical advance will come and turn our dream into reality!

It doesn’t matter how off-the-wall is sounds, write it down here, now.  Who knows where it will lead?