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.

Finally, the HB mystery unmasked!

As regular readers will know, over the last few months, I became quite unwell well, with fevers, lethargy, persistently low haemoglobin level (HB) and generally feeling crappy.  Also, gradually (so gradually I didn’t realise it was happening), my muscles and joints began to stiffen and lock up.  I was walking around like a wizened old man: bent over, no flexibility, only just able to touch my toes.

I eventually spent a couple of weeks in two different hospitals.  But it seemed that no-one could find the problem, until one young and enthusiastic doctor thought he recognised it, because it was his specialty.  He sent me for a full body MRI and which confirmed his hunch.  I had something I could barely pronounce: Polymyalgia Rheumatica (PMR).

Polymyalgia means “pain in many muscles”, which is pretty accurate.  The textbook says it causes pain and stiffness in people aged 50 and over (I’m 62 – Check!), including:

  • Muscle pain and stiffness, particularly in the neck, shoulders, hips and upper arms (Check!)
  • Stiffness that worsens after resting – for example, when getting up in the morning (or getting out of a car after a 30 minute drive – Check!)
  • Fatigue (Check!)
  • Difficulty sleeping (not me!)
  • Difficulty raising arms above shoulder height (Check!)
  • Unexplained weight loss (I lost 5 kilos (11lb) – Check!).
  • The onset is usually sudden (Check!).

The pain and stiffness came from inflammation when my white blood cells attacked my larger joints causing swelling in the shoulders and hips, and in the tissues around them.  The reason for PMR is unknown, though it may be triggered by respiratory viruses.

Apart from people over 50, women are more likely to develop it than men and interestingly, Caucasians are most susceptible especially people of Northern European (Scandinavian) origin (where my ancestors hail from!).

The good news is that it is pretty easy to treat, with my old friend from transplant days, Prednisone (/Prednisolone).  I have disliked and dreaded taking this drug since my first transplant.  It has many side effects on the bones, body and brain, but the one I dislike the most is the tissue-thin skin that bruises and tears at the lightest brush against a hard or sharp surface.

Still, after just two days of 20mg, my symptoms faded away.  It has simply eliminated the inflammation and all the nasty symptoms that came with it.  I feel ten years younger.  Toe touching is no longer a problem.

I have to take the Prednisone for at least a year, in gradually reducing doses until I find a level that just keeps the PMR at bay.  I am reducing the amount I take by 1mg a month .  (It’s a bad idea to stop or slow Prednisone suddenly: that can lead to an Addison crisis, and that’s not for me.)

One interesting reaction to being free of PMR is the rise in my HB level.  It has soared to 15+ gm/dL a dangerously high levels for people on dialysis, increasing my risk of thrombosis (blood clots).  Obviously the PMR suppressed my (or EPO’s) ability to create red blood cells.  Once removed, red blood cell production went into overdrive.

My nephrologist wanted it back down ASAP, so he has reduced my EPO and more traumatically, told staff to dump my blood at the end of three runs, rather than returning it to me.  That’s about 250mls of blood each time.   300ml of blood equates roughly to an HB level of 1 gm/dL, so the maths is right.  It just feels very wrong throwing blood-filled lines into the bin, especially after struggling to get every red cell back when my HB was so low.

Anyway, after all that time and drama, I’m back to being my sprightly self: walking, going to the gym and generally feeling exuberantly dangerous to myself and others.

App review: My Food Coach for all BigD-ers

Menu

My Food Coach: Main Menu

A few weeks ago Ken Marshall, the Chief Executive of FoodCare Inc. in California, emailed me about a new App for renal patients called My Food Coach.  The app and its supporting website provide customised nutrition guidance for recipes, grocery items, restaurant dishes and meal plans for people with special dietary restrictions like kidney failure and diabetes.

It is hosted by the US National Kidney Foundation (NKF), and is an excellent tool to help us BigD-ers stick to our “low this, not too much of that” diets and still enjoy a range of different foods at home and out on the town.

And it’s Free on the Apple App Store and Google Play.

 

 

Conditions

Medical conditions list

When I signed up, I provided basic info (age, gender, height, weight, activity level) and nominated osteopenia, dialysis with normal potassium and no diabetes.

The App then assigned me a range of dietary guidelines (maximum or minimum amounts of different food nutrients from various health associations) and each time I select a Guidelinessupermarket food item, recipe or a meal it measures it against the guidelines, and tells me if it is OK (with a green tick), is reasonably healthy, bad and or forbidden.

And I can add my own recipes via the website, and get the same personalized nutrition analysis and guidelines on them.  That could be a useful check, especially when something like my phosphate or calcium starts misbehaving, to help identify the culprit.

Recipes

Recipes List

Recipe

Sample recipe

I can also nominate local restaurants that serve dishes that meet my dietary guidelines, so other users can enjoy them too.

The App is about to be updated with a meal planner, which helps users plan a single meal (combinations of grocery items, recipes, restaurant dishes, etc.) or the menu for a week or more.  It tells you  if the meal passes your per-meal guidelines, or if your overall day’s intake is passing your daily guidelines.  This could be useful for someone just diagnosed with kidney failure (or diabetes, osteoporosis, etc) working with a dietitian to help understand their dietary needs.

The Pro version of the App is for registered dietitians who can use it to connect with their clients’ FoodCare profile. The dietitian can view the dietary guidelines that have been automatically assigned, and then go in and customize them for any individual client.  Advanced coaching support like expanded patient notes, uploading lab results, tracking client health stats, etc. are planned for future releases.

The App is quite new, so the recipe and meal lists are fairly thin right now (November 2014), but growing.  Ken tells me that they’re also adding more social networking features so the NKF can better engage their community members (sharing and featuring recipes, recipe commenting, more social sharing, etc.).

The App and website are currently US-oriented (I struggled to put my height and weight in feet, inches and pounds without a calculator!), and some of the functions are not so relevant (Events focus on the US, News is not local and Packaged Goods are not the ones we know).  Ken assures me that they’re “hoping to launch” an Australia version in the next few months.  That would be great, especially for packaged food available in Australian supermarkets.

But these are peripheral to the main game: customised nutrition guidance.  All in all, the App is a great resource, really simple, with one main screen and lots of background management functions.  The resources are very comprehensive and I especially like the Connect with a Dietitian and that they can view their clients’ FoodCare profile and customise client dietary guidelines for any individual.  An ideal resource for anyone on a restricted diet (like us BigD-ers), especially those just starting out.

Rating:  Four Stars!

Dialysis, my boyfriend and me

Marli (not her real name) wrote recently:

Hello, my name is Marli. I am learning a lot from your blog so thank you so much for all that you are doing.

I am 19 years old and my boyfriend is 24.  We have been together about 8 months.  He was born with failed kidneys and it is a very touchy subject for him so I’m afraid to ask him about it. 

From what I have gathered so far is that he had two more kidneys put in but they failed too.  He has had an operation twice in the time we have been together on his fistula, I think because it was collapsing. 

He often has low blood pressure, but it’s getting better.  I know he has eating and drinking restrictions, I just don’t know what they are because he never follows them.

I like going to dialysis with him and I don’t mind staying in most of the time.  I guess what I want to know, if you can help me with it, is what his food restrictions might be and what I can do to be a better more supportive girlfriend for him.

Marli

Hi Marli.  Wow, being born with kidney failure your boyfriend has obviously had quite a challenging life, and he is only 24.  I can understand his attitude.  From what you say, he has never had a ‘normal’ life; his has alternated between the relative restriction of dialysis and the relative freedom of a transplant.  I don’t know how long the transplanted kidneys lasted, but it is always a shock going back on dialysis.

Now he is back on dialysis, and it sounds like he is angry and finding it difficult to accept being there.  At a logical level, most people come to terms with needing dialysis reasonably quickly.  They can handle the needles and the hours in the chair; they feel healthier and have more energy; they understand that they need dialysis to live.  But at an emotional level things are often very different: we all mourn and resent the loss of our health and freedom.

When I went back on dialysis after my second transplant failed after three years, my anger lasted off and on for several years, not only because my transplant had failed me but because the freedom it had given me was over.  I was not above sending messages of anger or denial: coming in kilos overweight, ignoring fluid restrictions and diet, forgetting binders and OD-ing on salt.

Sound familiar?

Of course, I eventually worked out that the only one on the receiving end of my anger was me.  But it takes time.  it is actually a well-known grief cycle (see Dialysis from shock to acceptance).  Some admit it, others are in too deep.  Some of us go fast, others slow.  But we get there eventually, and so will he.

I am sure he appreciates having you there, so don’t be discouraged.  He is going through a normal but painful process.  You being there with him can only help him get through it a little quicker.

Regarding food, have a read of the attached Briefing on Dialysis and Diet.  It is a good place to start to get an understanding how the two are intertwined and what you can do to help your boyfriend.  For specific ideas, recipes, etc, just do a Google search on each of the items in bold on the briefing, with “Kidney diet and” in front of it (eg Kidney diet and potassium). There is a wealth of information available.

Also, check out a new App for renal patients called My Food Coach.  It is hosted by the US National Kidney Foundation, and it is excellent.  It’s free and well worth signing up.

You provide basic info (age, gender, height, weight, activity level) and chronic diseases/stages.  The App will then assign your boyfriend clinical dietary guidelines from major health associations and perform a nutrition analysis on every food item.  You can see instantly which recipes pass his personal dietary guidelines (with a green tick), which are reasonably healthy, which are bad and which are forbidden outright.

You or he can add any of your own recipes to the system, and get personalized Nutrition Insights on them.  And anyone else using the app can get their own personalized insights based on their own dietary guidelines.

I will be reviewing the App in detail in my next post.

Good luck!  Greg

Every donor kidney a perfect match: no more transplant drugs!

We all hate rejection.  It hurts us somewhere deep inside.  And those of us who’ve had an organ transplant hate it most of all.  Because the only way to make all that pain go away is by taking a hearty (sometimes heroic) dose of anti-rejection drugs.

Rejection is driven by our body’s immune system, a collection of cells (T cells) that recognise and destroy foreign cells: germs, poisons, other bits that find their way into us. All cells have proteins called antigens on their surface.  As soon as these antigens enter our body, the immune system recognises that they are not from our body and attacks them.

When we receive an organ transplant, our immune system may detect that the antigens on the cells of the organ are not from our body or not “matched.”  Mismatched organs, or organs that are not matched closely enough, can trigger rejection.  To help prevent reaction, doctors type, or match both the organ donor and the person who is receiving the organ.  The closer the match the antigens are between the donor and recipient, the less likely that the organ will be rejected.

Anti-rejection drugs work by slowing down our body’s immune system.  But you can’t let up:  it’s like pressing our foot down on a spring: the moment you take it away, it bounces back to exactly where it was.  So once you have a transplant, you must take the drugs for as long as the transplant lasts (which can be decades).

The trouble is, anti-rejection drugs have side effects:

  • With our immune system supressed, we catch every bug that’s passing by and because we have almost no resistance, the damage it can cause is massively exaggerated (where a person with a normal immune system may get a mild sniffle, we can easily end up with pneumonia)
  • The drugs do things to us (give us moon heads, thin easy-tear skin, bruises from bumps a 90-pound weakling would brush aside, scramble our brains and our emotions and lots more).

But all this may change over the next few years (key dramatic, super up-beat music).

Re-writing the anti-rejection script

Dr Tracy Heng, Monash Immunology & Stem Cell Labs, Faculty of Medicine, Nursing & Health Sciences

Dr Tracy Heng, Monash University Department of Anatomy and Developmental Biology

Last week I had the pleasure of interviewing Melbourne scientist from the Monash University Department of Anatomy and Developmental Biology.  Dr Heng and her colleagues from the Departments of Anatomy and Developmental Biology, and Immunology and the CSIRO are re-writing the anti-rejection script: this time eliminating the cause of rejection rather than stamping on the spring.

Put simply, they have found a way to make every donor kidney a perfect match for the recipient using the body’s own mechanism for teaching the immune system to recognise what is foreign versus local.  Of course it involves the wonder building blocks of all cells, stem cells.

How it works

During the normal course of events our immune system creates the T cells it needs from our bone marrow stem cells.  Dr Heng and her colleagues have found a way to introduce foreign bone marrow stem cells from the donor into the recipient’s bone marrow.  The stem cells mix with the locals and when they are converted into T cells, they have been “educated” to see all donor cells as a perfect match.  When the transplanted organ arrives there are no alarms; no attack; and no rejection.  This technique is called “tolerance induction”, whereby the recipient becomes tolerant to the donor organ.

The technique involves using a small dose of Busulfan (a chemotherapy drug usually given before a stem cell transplant for leukaemia) to slightly reduce the number of the recipient’s bone marrow stem cells, making space for the donor stem cells.  The stem cells are then transplanted into the recipient’s bone marrow combined with a small amount of anti-rejection drug for a few days to stop the donor stem cells being rejected.  The recipient is now ready for the transplant.

Good for the life of the transplant

The technique specifically replaces “long term” stem cells, to generate long lived, educated T cells that they expect to last at least as long as the recipient has their transplant.

Low impact and radiation-free

Dr Heng noted that a variant of this approach has been trialled in the US, using larger doses of chemotherapy drugs or radiation, which may not be suitable for the sick or elderly (both groups are heavily represented on transplant lists).  This new approach is a radiation free, way of producing the educated T cells.

Good for aged transplant recipients

Dr Heng started this research in 2009, and the team has conducted successful pre-clinical trials with both young and aged mice, despite age-related cell degeneration in the aged mice.  From a clinical viewpoint, this is especially important, as the majority of transplant recipients are older patients whose immune recovery might be dangerously slow and would benefit from a radiation-free, low impact conditioning technique that enables organ transplant without compromising their immune system.

The details were published in the 10 July 2014 edition of the American Journal of Transplantation. 

When can we line up?

Not for a few years.  There are many tests and trials to complete before it becomes a standard clinical treatment for transplants.  But the fact that the team is using drugs that are in use worldwide means there are no drug safety hurdles.  I’m betting it will certainly be the norm in my lifetime (I’m 62).

Of course, since the whole objective is to make each donor organ a perfect match for the recipient, this treatment is limited to live donor transplants.  Deceased donor transplants happen within hours of death, so there would (currently) be no time to condition the recipient’s stem cells.

Those who follow this blog know that I’ve had two transplants, one from my wife (bless her) and one from a deceased donor (bless him/her too).  Neither did particularly well, because it seems I can reject almost anything, regardless of the level of performance enhancement provided by anti-rejection drugs.

If this technique was available in 1995, I would now be swanning around with my wife’s kidney tucked safely under my right rib, the world as my oyster.  Sadly it was not to be.  But very soon, a whole new population of donor kidney (/ liver/ lungs/heart and most other body bit) recipients will be doing just that.  All thanks to wonderful, smart people like Tracy Heng and her colleagues.

The Best Dialysis Machine?

I had an interesting email from Lawrence recently, about the pros and cons of the various brands of dialysis machine:

Hi Greg

I’ve been dialysing for a year now on Fresenius machines and in the last few months have been doing home hemo on a Fresenius.  I’ve had constant issues with poor arterial pressures and alarms. The techies have been out to try and sort the problems and eventually decided that it must be my line which was the problem.  

This week I am on holiday and have been dialysing on a Braun machine.  What a difference!! I’ve been attaining pump speeds of 350 (I can barely make 300 on the Fresenius) and the arterial and venous pressures are brilliant! My KTV is 1.5.  

I communicated this to my unit who have been stonily silent on the subject.  Has anyone else come across this kind of difference?  I’d be interested to know.  The Braun seems a much superior machine to me, with far more streamlined tubing.  I’ve tried to research on the internet but can’t find any comparative studies on dialysis machines.

Best wishes, Lawrence

Hi Lawrence.  I don’t have a lot to contribute about various machines.  I dialyse on Gambro, which are fine.  I regularly achieve a pump speed of 370 milliLitres per minute (mL/min).  Gambro have the usual alarms and hassles, but do the job well for me.

On holidays I have dialysed on Fresenius, Braun and Nipro.  I have found that I don’t usually achieve more than about 350 on the Fresenius machines I use on holidays (through the nurses usually say that the Fresenius doesn’t need to go as fast to do a better job!).  Just the same, all seem fine to me, though technicians I have spoken to tend to rate Nipro a little behind all the others.

I have heard the NxStage machines tend to under dialyse because of their portable nature and use of limited water supply.

Regards, Greg

I look forward to hearing the thoughts from other BigD-ers!