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

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.

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 supermarket 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 List

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!

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.

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 (click to view)

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

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.