Greg Collette

Greg Collette

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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 yourBigDandMe 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

... https://bigdandme.wordpress.com/2015/01/04/your-15-minutes-of-fame-what-you-think-about-dialysis/

Wednesday, 21 January 2015 05:59

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.

... https://bigdandme.wordpress.com/2015/01/21/whats-it-like-to-be-on-dialysis/

Thursday, 19 February 2015 22:16

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!).

... https://bigdandme.wordpress.com/2015/02/20/a-little-older-in-the-shoulder/

Thursday, 19 February 2015 22:16

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!).

... https://bigdandme.wordpress.com/2015/02/20/a-little-older-in-the-shoulder/

For me, every Monday starts a new week with the needle brothers (needles are definitely male).  So I thought it would be interesting to get close up and personal with the mechanics of needle access each time I connect to the machine.

I am a little different from most, in that I connect up 5 days per week, starting early (7am) on Monday, with afternoons on Tuesday, Wednesday and Thursday, and then another early start on Saturday.  And since I use the buttonhole technique, both my Needle Brothers are blunt and go into the same access holes (almost) every time.  Non-intuitively, there seems to be no ill effect on the strength of the fistula wall (but I am always watching…).

For each hole I clean the area thoroughly, coat it with antiseptic (Betadine) and start to remove the scab using a sharp 19 gauge poking needle.  There is a trick here.  Because the scab is being constantly removed before the hole has a chance to heal, it tends to grow back a little more aggressively each time.  It begins thick and proud and easily lifted off, but after about day 4, it grows back low and thin and tightly attached, especially if I have pushed the needle fully into the hole with the collar hard against the skin.  For some reason best known to the scab, it then grows back concave, into the cavity formed by the collar and is very time-consuming to remove.  I have found the best way to avoid this when connecting is to leave a little (1/2 mm) of the dialysis needle out of the hole.  The scab then continues to regrow on top.  Also, by day 4 or 5, the scab is so thin, it is easier to scratch through it than to remove it.

Once removed, I feel around the exposed flesh for the entry hole.  When I find it, I poke the small needle lightly into the hole to provide an easy entry for his big brother.  I then insert the large blunt needle into the track, and if all is lined up, it glides effortlessly down the shaft, pushes open the puckered hole in my fistula and settles in place for a few hours’ blood flow.  I tape the needle into place, usually packed up by a rolled up gauze pad, leaving a very small area of the needle shaft showing, and positioning the tip in position away from the internal wall of the fistula for easy flow.

I then do the same for the other needle.

Sometimes there are problems.  My fistula has a habit of moving about under my skin, so that one day the hole lines up with the track and the next day it is over to one side, and I have to chase it.  I do this by feeling this way and that with the tip of the needle (I NEVER push it hard) until either I find it, or I give up and replace arm-friendly Mr Blunt Needle with potentially arm-hostile Mr Sharp Needle.  Hole movement happens naturally over a week or two, and more often when I go to the gym regularly.  I find that exercises aimed at building up my biceps or triceps tend to either build muscle or flesh between the track and the hole or nudge the fistula this way or that, moving the hole away from the tunnel (I call it the Schwarzenegger curse).

I wish someone would invent a fistula hole finder (like the reverse of a stud finder for plaster walls). Life would be sweet and Mr Blunt would prevail.

Removing the needles at the end of the run is simple.  First remove the tape holding it in place, loosen the needle so it is easily moved, then position a small sterile gauze pad over the needle exit.  Simultaneously remove the needle and press the pad firmly onto the fistula hole to stop blood escaping.  Do not Press down on the pad while the needle is still in place.  It hurts, and it damages the tunnel and the hole in the fistula.  The pad should be folded so that it enables focussed pressure on the fistula hole rather than general pressure around the access point.

Once the bleeding stops tape or seal the hole as appropriate.  I use gauze and tape, other use dots.  Buttonhole holes tend to stop bleeding within 5 minutes.  I take off the tapes after a couple of hours.  Other need longer; it depends on you.

Well, that’s it.

Oh, also, as preparation, when I am on my way to each session I spend a few minutes visualising the whole access process.  Then, when I arrive, I am in the right frame of mind to get started.

... http://bigdandme.wordpress.com/2012/07/08/on-dialysis-life-with-the-needle-brothers/

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