A September medical adventure on dialysis

For the last couple of years, I’ve been unusually healthy: no major dramas or hospital admissions; not many infections, colds or the like. And I was pretty healthy for our Lisbon trip.

This kind of peace and quiet can lull you into a false sense of security, where you start to think that health might just be the norm. But sadly, all of us BigD-ers need some pretty fancy footwork and a good dose of luck to stay healthy.  Or at the very least, we need to keep thinking and not make dumb decisions.

I stopped thinking and fell into my unexpected medical adventure on the 13th, around an hour into my dialysis run. I went into AF (irregular heartbeat) and my pulse got faster and faster. I was short of breath and had waves of chest pain; I thought my chest was going to explode. I persisted with dialysis for a while, hoping to get to the end of the run, but that was not to be. The staff called an ambulance, took me off the machine and I called Julie.

Julie arrived first (and I was really pleased to see her), followed by the ambulance. The paramedics were cool and calm and started work immediately. They took a range of measurements (pulse, ECG, temp, bloods, etc), asked me how I felt and I said I had chest pain like an ache in waves. The senior paramedic thought it was heart rate pain – because my heart rate was too rapid, it couldn’t effectively pump blood to the rest of my body, depriving my organs and tissues of oxygen and causing the pain, shortness of breath, etc.

They gave me a GTN (Glyceryl trinitrate) patch (to widen my blood vessels and let more blood and oxygen reach my heart) and some chewable aspirin (to slow blood clotting). Then a small injection of Morphine, to reduce the pain. I felt a lot calmer after this, but my heart was still playing helicopters in my chest.

1-af-amb-3-001Then they packed me up and we went for my first ever ambulance ride. Julie followed in the car.

We went to the closest hospital, The Austin, which is also my ‘Home” hospital, where I have had two transplants, three kidney removals, and many, many stays for infections unknown and known (like pneumonia) and the odd heart disease problem. It is quite disorienting, scooting along in the back of an ambulance. I know the way there quite well, but each time I looked out the window, I really had no idea where I was.

In the past, I have always been admitted via the Emergency Department, often after a lengthy wait. This time, I arrived at the Ambulance entrance with flashing lights; the doors opened and I was wheeled in on a trolley. There was still a wait; it was super-busy so I just laid there and watched the drama, of which there was plenty.

For some reason, this was a night for Ice overdoses and aggressive, crazy people. The ED staff are not only skilled, they are brave. In the glimpses I saw, one patient was clearly out of her mind; fighting, swinging, grabbing, punching, screaming, swearing and staring with blank, hate-filled eyes. She was gradually strapped in place in a bed but continued to thrash and struggle and stare. It was as scarily close to a real-world zombie movie as I ever wish to experience. Asking myself why anyone would do this to themselves was as horrifying as it was pointless.

Every few minutes, I texted my progress to Julie and Mark, our eldest, who were in the ED waiting room, about my progress.

Eventually, I was taken to a cubicle for more tests and heart drugs. By this time, it was about midnight. Julie and Mark were shown in. Mark left around 1:30am. In the past, I have spent the night on a trolley in ED waiting for a bed in the kidney ward. But no one mentioned being admitted this time. Julie was all for waiting around, but I thought I would be hours yet, and eventually convinced her to go home around 2am.

Around 2:30am the heart drugs started to kick in and my heart beat gradually returned to normal. Around 3am, the cardiac specialist came by and said I could go home! I called Julie, who had just fallen asleep. She drove back and picked me up. We arrived home around 3:30am and flopped straight into bed. I slept like nothing had happened

I slept like a log and woke feeling like nothing had happened. Luckily, there were no after-effects, and heart-wise all is well. Julie and I are still recovering from the drama.

Lesson. Later, discussing the whole thing with my doctor, I remembered that sometimes when I try to take off more fluid that I need to, my heart reacts to the reduced fluid volume by going into AF, usually for a few hours. This time, I had tried to take off much more than I needed to.  Stupidly, I persisted and my heart reacted accordingly. What I should have done was to stop dialysis immediately, have a drink, and recalculate my dry weight. What I did was panic and keep dialysing.

Like I said, sometimes  good health simply involved thinking straight and not making dumb decisions.

International Travel Tips on BigD – an update

1-img_3565International travel is fabulous:  new worlds, new food, new language, new experiences, adventures and delights.

Of course, international travel can also be a little daunting. Once you step outside your door, your supports: your language, your local knowledge, your contacts, your comfort zone, disappear.  You are in the hands of others for the simplest of activities, from getting around, to eating, drinking, sleeping, going to the bathroom, and especially dialysis, because we all need our regular BigD fix, no matter what.

So preparation, planning and once you arrive, vigilance are the orders of the day(s).

Our last trip, as readers of this blog, will know was to Lisbon, Madrid and London for the 2016 Diaverum Global Dialysis Conference.

Apart from the great time we had, I learned a few (more) lessons about dialysing in foreign lands, and I’d like to share them with you.

Arranging Dialysis

As any BigD-er who travels knows, arranging dialysis is not a trivial exercise. Getting units who don’t know you from Adam (or Eve) to make room in their already busy unit needs a little dedication and some negotiating skills. Your Unit Manager is the ideal starting place (see eight steps to scheduling your dialysis for details).

If you are travelling to non-English-speaking countries (like Portugal and Spain), ask for an English-speaking contact in your first email.  You will also need someone at your end who speaks the lingo, at the very least to check that the arrangements being made are the arrangements you want.

This was my second dialysis holiday to non-English-speaking countries – the first was China – and I thought I knew the ropes.  But no.

China was a short stay (a week) and all dialysis was at the same unit. This time, I was away longer (15 days) and I dialysed nine times at four different units: two units in Lisbon, one in Madrid and one in London.

I had forgotten how stressed I can get when I don’t know the people or the unit I am visiting, whether it’s down the road or on the other side of the world. So I usually check everything with the nurse putting me on and confirm all the settings and pressures are as I like it.

But some units in Lisbon and Madrid, nurses only spoke their home tongue and I was stopped before I began. I found this very stressful.

Hot Tips

  • Minimise stress and worry by minimising the number of different units you visit. Getting to know the staff and the quirks of each new unit is highly stressful.
  • 1-img_7700

    May  I have a glass of ice please?

    If possible, minimise the number of units you visit that don’t speak your language. While most have someone that can speak basic English, there is no guarantee that they will be available.  Trying to ask simple questions, like “What is the wireless password?” or “May I have a glass of ice?” can be very difficult and frustrating.

Here the Google Translate App can be very useful, especially if you type out a few standard questions ahead of time.  Just call up the translation and turn your phone into landscape mode: the message will appear in huge letters that can be read from across the room.

  • Some units are less accommodating than others. Ask about any requirements you have (they may be standard in your unit, but against some policy in the one you are visiting).  For example, in the Fresenius unit in Madrid, when dialysing at dinner time I was not allowed to eat anything (no matter that I have eaten dinner on dialysis for 20 years).  To me, “It’s protocol” is another way of saying the unit is organised for the benefit of staff, not the patients – who are paying (€300 in cash – about US$343) for the privilege.
  • Keep up your protein intake. Be prepared for different food and if you don’t like what’s on offer, make sure you eat something else that roughly equates with what you would normally eat.  The alternative is skipping a meal or two, which combined with the additional exercise you get just by walking around will results in you losing weight without realising it.

All of a sudden your blood pressure rises, and doesn’t go down after dialysis, because your base weight has fallen.  In my case, I lost 2 kilos during the first week and I couldn’t work out why my BP was so high.  Once I realised, I reduced my dialysis base weight and my BP returned to normal.

  • Go to units with good lighting that you can control; this makes sleeping and using a computer less of a struggle
  • Find a way to keep your EPO/Aranesp refrigerated. Unrefrigerated, it will last only 7 days. If you run out or have to throw it away, you may find it very difficult to replace.

The Reward

Lisbon and Madrid turned out to be just wonderful. I had very little prior knowledge of them, especially of Lisbon. I knew from Casablanca that it was neutral during WW2 (that’s where Ilsa and Victor Laszlo went to escape from the Nazis!), but not much more. So before leaving, I read a great history of Portugal, called “Conquerors: How Portugal Forged the First Global Empire” by Roger Crowley. It was quite an education, and I was keen to see all the historical places that spawned the age of Discovery.


But Lisbon is so much more than that.  It is a mediaeval city 1-img_3303surrounded by 18th to 21stcentury modernity.  Tiny trams on cobbled streets wind around the seven hills that embrace that beautiful city. Early morning walks through deserted streets and stairways with brooding clouds over earthquake ravaged cathedrals; evening promenades through the bustling and musical Latin nightlife. The views over the city from the high points reminded me of Malta on the Med with the red- tiled roofs, pastel coloured walls and wrought iron balconies. And a surprise and adventure around every corner.


Though we were there only a couple of days, Madrid was as bewitching.  Sipping red wine while watching passionate Flamenco dancers on a tiny stage in a tiny café. Night walks where everything was just starting, every tiny shop and café open, people walking in groups, singing, dancing and eating. Beautiful architecture and broad vistas never far from amazing plazas packed with life.


London was its usual dynamic, delightful, spectacular self.

What’s not to like about international holiday dialysis?

Dialysis​? Choose your topic!

The one downside of a blog is that each time you write a new post, the previous one is shuffled down the page. So as time goes by, all the older posts get lost downstream in one long river of posts. If you want to read about a certain topic, you have to either scan the posts one at a time or use the search function. Either way, it’s not easy to get an overview of everything that’s available.

So, after six years and 213 posts on a large range of dialysis topics, it’s time to raise the bar and make it easier to find subjects and posts that cover various themes. For the last few weeks, I’ve been re-reading and classifying them into a map or framework of topics (or in blog-speak: Categories).

Here is the resulting Map of Topics:


It is quite a list, but hopefully, it is also a useful way to find a topic you are looking for.

Getting there

Is simplicity itself!  The Categories list is on the right-hand side of this screen, second item from the top.  Just click on the down arrow where is says Select Category and the list will be displayed.  The number after the name is the number of posts about the topic.

Also, I am gradually changing the way the posts display, by inserting a break after the first few lines, with a (…more…) link.  This is designed to make it easier to see all posts and get the gist of the topic.

Regarding the Travel topics, there are at least 12 countries listed so far,  but most travel posts actually deal with specific cities rather than countries, so you will need to scan the posts to find the one you need. (There are several better options for managing posts and reviews about travelling on dialysis. I will cover them and my proposed solution soon.)

I hope this is useful!

Flash: Dialysis staff go home and leave patient locked in

This would funny if it wasn’t so serious. Was this just a bad day or is there something fundamentally wrong with the culture of the organisation that runs the unit?

I hope that, like me, most dialysis patients just can’t imagine being locked in their unit after everyone else has followed Elvis from the building.  Hello?  Hello?  Is anybody there?  Anybody?? (more…)

Just starting PD and looking for support

Anna emailed me last week:

Hi Greg,

I stumbled across your blog while looking up info on PD catheter surgery info.

I am a 47-year-old  mom of a beautiful 2-year-old child in California. I inherited high blood pressure and kidney disease. All my siblings in our family have kidney failure.  It kicked in around late 30’s and early 40’s. I was diagnosed the latest at 45 and think it advanced due to my pregnancy.  We were hoping my numbers would go back to normal after the baby but no such luck. (more…)

Skin too thin for a fistula?

John emailed me today:
Hello Greg,

800px-Schema_fistule_arterio-veineuse_-_AV_fistulaI found your Big D and Me blog when Googling “fistula thin skin”. Thank you for the thoughtful blogging about dialysis and your compassionate spirit reflected in your posts. If you don’t mind, I’m writing to ask your advice or for some of your knowledge. If you wish, I can re-post this on your blog site and you can reply there if you want this thread available to all.

My 81-year-old mom has been on dialysis for 5 years in Memphis, Tennessee, USA. She began dialysis soon after heart surgery. To begin dialysis, she went through the usual process of a Permacath while building/growing a fistula in her left arm. The fistula performed well until last Spring when her fistula burst and haemorrhaged twice, each of which nearly killed her. The vascular surgeon opened the fistula site to rebuild but said the fistula was heavily ulcerated and unusable. (I suspect poor care of the fistula over time by medical staff, but that is in the past.)

We had an appointment with the vascular surgeon for her to have a vein mapping done in her other arm for a possible new fistula, but the port, which she had put in after the fistula burst, became infected and she became septic. She was taken to the hospital to have the infection treated with IV antibiotics, so she missed the vein mapping appointment. While in the hospital, the cardiologist and nephrologist said she was not a candidate for a new fistula because her skin is too thin and fragile.

While I believe it is certainly possible that her skin could be too fragile, it’s odd to me that the vascular surgeon, who examined the arm just a couple of weeks earlier, seemed encouraging about the possibility of a new fistula. (It’s hard to know who’s opinion to trust more. I value the cardiologist’s opinion least because he doesn’t deal with the mechanical aspects of a fistula and dialysis scenarios as much.)

Without a fistula, of course, a Permacath is the only other option, which I believe will likely become infected with time.

Question: Have you heard, in your experience, of age and/or skin condition being a factor in evaluating a fistula site, and then completely ruling out the possibility of a fistula?

If a port is going to be her only option, can you offer advice about avoiding infection and catching it early if it happens? (My understanding is that a port is always removed when there is an infection because a foreign body can harbor bacteria. Of course, infection and port removal mean yet more hospital stays and procedures.)

Part of the picture here is my mom’s quality of life. She is very sharp mentally and was walking on her walker a few weeks ago. I believe she could continue with a significant quality of life if she could remain infection free and dialysing regularly without incident. But, with event after event (haemorrhages and infections), she has expressed an unwillingness to tolerate that for long, and I would not blame her.

Thanks for any advice or knowledge you may offer.

My initial response:

Hi John.  Thanks for your email.

I’m sorry to hear about your mother. It is an awful time for both of you.  Give me a couple of days to think and to ask around.  I’ll come back to you soon.

In the meantime, I’ll put up your question as a new post, so that others may help too.

Update:  We’ve had some great responses:

  • Henning, as usual, told it as it is:

….Hello Greg and John,

Unfortunately, the cardiologist and nephrologist are probably right. You do need a certain level of tissue above the fistula for it not to create trouble. On the other hand, I can’t be too deep either. The more shallow the fistula, the greater the risk of haemorrhage. (see the rest in his comment below)

  • Julie Tondello gave us the clinician’s viewpoint:

Hi Greg,

In our experience, the viability of creating a new fistula would generally be established through vein mapping and reviewed by a vascular surgeon and care by a vascular access nurse.

Many dialysis patients are in their 80’s and even 90’s have very fragile skin.

Avoiding infection of a perm cath needs to be the responsibility of nursing/ medical staff and the patient themselves. The incidence of infection will vary from clinic to clinic but a good clinic should have zero infections. Be scrupulous with hygiene is paramount. Many clinics use the principles of Aseptic Non-Touch Technique (ANTT) through the procedure of connection, disconnection and dressing changes.

Small measures but important, patient and nurse wear a mask when connecting/ disconnecting/dressing. Look for early signs of infection, inflammation, temperature, rigors. Change dressing weekly unless dressing compromised. Advise patient not to get permcath wet in shower or pool.

I hope this is of some help.

Regards, Julie

  • In another comment dynamicdialysis (below) suggested seeing a vascular surgeon vascular surgeon, and that fistulas  can be made in the leg.

Many thanks to all so far!


Quick read: How to slow/stop your fistula bleeding

1-Snapshot_0-001The key to slowing or stopping your fistula from bleeding (whether it’s after a needle has been removed or (God forbid) a rupture) is to understand why it spurts in the first place.

Our fistulas are created by connecting a high-pressure artery, full of oxygenated blood coming at a great rate from our heart, to a vein, which is usually returning de-oxygenated blood at a leisurely rate (about 80 mL/min) from our body back to our heart (more…)

Preventing Fistula Ruptures: training course for patients

DV Poster 99DesI have just returned from the Renal Society of Australia’s annual conference, held on June 20 t0 22 this year at the Gold Coast, Queensland.  The conference is for renal professionals, nurses, clinicians, doctors and consultants. I went along because I was a co-author on one of the presentations.

The other author and presenter was Julie Tondello, a renal Associate Nurse Unit Manager at my Diaverum dialysis clinic in Diamond Valley, Victoria. The paper was called “Can your fistula rupture?” and was triggered by the ongoing posts, comments and queries about fistula rupture deaths on this blog. (more…)

Who stops Dad’s dialysis?

Dont stop me nowIsabel wrote to me last week:

I have an 86-year-old father who has only been on dialysis for 2 years, but he’s also battling lung problems-COPD, early stages of Parkinson’s and hypertension. He’s bed ridden and lays on his bed all day long day after day. Sometimes a friend comes over and helps us move him to his chair but my dad gets frustrated that he can no longer walk. (more…)

Speaking of dialysis…

1-IMG_1532As I hoped, here is the video of my speech to the Diaverum Annual Conference at Cascais, Portugal, last month.  It was called: The View from the Chair, a Patient’s Perspective.

It covers a bit of ground, but the highlights (apart from the joke at the start!) are: (more…)