Test Drivers Needed! (closed Tue 28 Nov)

Firstly, many, many thanks for your kind thoughts and good wishes. I very much appreciate them. And they must have worked, ‘cause I’m back!

I’ve been going on for some time now about how important it is for people on dialysis to travel if they can. Across the state or to a foreign country. Not only can it be a wonderful adventure, it can change your whole outlook: My life is not just what I do between dialysis runs, I’m a traveller, who dialyses every now and then between adventures.

Maybe 20 years ago, it was radical to travel across the world. But now, not only to patients expect to travel, so too do dialysis clinicians promote travel as an important part of each dialysis patient’s life.

Think of a country, region or city, and 9 times out of 10 there will be a dialysis unit there that will be able to cater for your needs during your stay. Sometimes the units are public (government run), sometimes private; often they are busy, so you’ll need to negotiate to get a seat, but most will welcome you with open arms.

The big question now is: how good is the dialysis where I want to go? Is it safe? Are the staff knowledgeable and capable? Will I have to wait long for my sessions, is the seat was comfortable, is there wireless? Cash or credit? Any chance of a nice meal? And many more questions.

Of course, the best way to find out is to ask someone who has dialysed there. Someone who knows the ins and out of what dialysis patients worry about and expect.

But good, current review sites are thin on the ground. Which is a shame, because I think that most patients I know of would rate units they have travelled to as at least 4 star; so a patient-driven rating site would, rather than passing judgment from on high, emphasise how safe it is, and thus help encourage every dialysis patient to travel.

So, about a year ago, I wrote to several famous review sites, suggesting they should have a special category for dialysis patients to review units based on specific criteria. Zero interest.

Then I decided to have a go at building a site. I wrote up what I wanted and put up a job on one of the many IT programming job sites. It started well, but fairly quickly the person I got to do the job lost interest. FAIL; start again.

I talked about the site with some friends and one suggested that I should try to get it built as part of a University community project. Great idea! I contacted the local university, Swinburne University, just down the road. Yes, they would be happy to look at a programming a holiday dialysis unit rating website as a project for some of their IT students, so long as there was a community benefit.

We had a meeting. I wrote a paper. Yes, they would schedule the project to start in July 2017. Since then, three very clever students, their supervisor and I have been very excited and creative, and our excitement and pleasure of creating this thing of beauty has not flagged. Over the last five months, the site has gone from an idea on paper to a detailed design, to now, a working system.

The next step, before releasing in January 2018 for real reviews is to test it, to make sure there are no surprises or glitches and to get your feedback so we get it right for everybody.

Of course, anyone and everyone can be a tester, not just BigD-ers.  The more the merrier.

Testing involves going to the development site, logging in, signing up as a user, then play with the site as you see fit. So, if you have a moment, please jump in and give it a go!

Latest: The system test period is now over. Watch out for the system launch in January 2018!

 

 

Then there this: more shameful than inspirational

Again, I’m a little late to the party, (this aired in May)  but have you seen this story?

It is a truly shocking report. it confirms our worst fears: US dialysis is in crisis. The most expensive dialysis service in the world has the highest dialysis mortality rates.

Two for-profit giant companies (DaVita and Fresenius) deliver 70% of the care, overwork and underpay staff while making enormous profits. From this report, it is clear that the industry is overwhelmed by bad incentives, poor oversight, and profiteering.

Any wonder why over 70% of the fistula rupture stories on this blog are from US readers.

The one small light at the end of the tunnel is the California Dialysis staffing bill.

But first, have a look at the report (Language warning!).

Medscape has a great article about\ the California bill, (it’s free, but you may need to log in), that has attracted a huge number of comments, all in favor.

For example, one nurse wrote:

…The problem arises when you take care out of patient care.  By this, I  mean that the monetary value of running a clinic outweighs the quality of care provided by the staff.  You can not expect Staff to give the quality of care when they are overloaded with 4+ patients to care for and only have 15 minutes between each patient to rinse back, take VS, close up their access (be it a catheter or a access (graft or AV Fistula)) and put another patient on by doing their VS, quick assessment, cleanse their dialysis catheter/ graft/av fistula, start their treatment, document on the patient and give report to a charge nurse.

And another:

…I was tired of on-call and went to work in-center and my ratios in New Jersey were 3 patients per tech, nine patients/RN.  I had to assess 9 patients and put on 3 every shift and when you have techs they may put the patient on the wrong bath, not do vital signs timely, with no time between shifts if you had a patient hypotensive, it was insane.  A patient died on that unit, but not assigned to me that day because the techs did not do their vital signs and the nurse was busy doing something else. The B/P kept on dropping and no one assigned in that area ever told the nurse assigned there.  You still have to do care plans, monthly notes, give blood, give meds, and get yelled at because you are not doing turn over fast enough.

How the No boosters keep a straight face is beyond me.

One interesting thing from the video: when these companies are sued, they settle.

Food for thought for anyone who has had a loved one die from a fistula rupture in one of their units,

Road trip to Adelaide!

Julie has been commuting to her work in Adelaide a few days a week for more than a year now. So, for a change of pace, we decided to start our New Year by driving there together for a working holiday – she would work while I’d be on holiday!

There’s nothing as romantic as a road trip, where we could check out the delights of remote Victorian and South Australian country along the way. When you fly, you leave home, sit in a tube for an hour or so and you are there. On a road trip, the holiday starts as you pull out of your driveway. (more…)

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). (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…)

A call from home

1-home_is_where_the_heartI’m back home.  Well and truly.  And what a wonderful trip it was.  We spent nine days in Portugal (Lisbon and Cascais), two in Madrid and four in London, a total of 15 days.

My original plan for this post was to write a little about the trip and a lot about the dialysis experience: how it went, how I managed, what I liked, what I didn’t, what I would do differently, what may be useful when you plan your trip.  But life, in the form of a call from home, interrupted this plan.  It’s my internal top story, and it’s pushed dialysis aside. (more…)

Lisbon adventure #1

1-pickp-001Lisbon: we were having a ball.  Different, amazing buildings; windy, cobbled lanes; tiny yellow trams squeezing through cramped mediaeval streets, shops with never-seen-before stuff that’s hard to resist.  History at every turn.  And here comes one of those delightful No 28 trams.  Will we catch it?  Absolutely.  Where’s it going?  Who cares! (more…)

Off to the Diaverum Global Dialysis Conference

I’ve been missing in action for the last few weeks, for a couple of reasons.

Josie & Liam Firstly, our No.2 Son just married his lovely fiancé here in sunny Melbourne (on the beach at Elwood).  It was a great wedding, but they live in London, so Julie and I have been pretty busy preparing. Not much time for blogging.

(more…)

Living life to the full on dialysis – Travel!

Over 70's Aust Cricket Team in whitesLiving a full life on dialysis is not just for a lucky few that somehow stay healthy and energetic between BigD runs.  It’s a state of mind.  Just because I dialyse doesn’t mean I can’t do things.  Simple things like getting out of the house for a while: going for a walk or a coffee with a friend, going to a movie or the football. or walking the dog.

Then for a little more adventure, maybe go somewhere out of town on a non-BigD day: to an art gallery or festival in the country, or a shopping trip somewhere new, or a boat or train trip to see the sights along the way, with a lunch or afternoon coffee as a reward when you arrive.  (more…)

Kidney transplants in China – the real story

Two days ago (7 Apr 2015), SBS Dateline broadcast Human Harvest: China’s Organ Trafficking.

Just 24 minutes long, it is a truly shocking story about the source of kidney and other organ transplants, with evidence from the doctors who performed some of the operations.  Organs, including corneas and kidneys brutally removed without anaesthetic from tortured political prisoners, who are then killed and disposed of.

Not just a few transplants either.  (more…)