It’s all pretty simple and easy to use: Booking dialysis is a lot like booking a hotel on Bookings.com.
Over the last six months, we have managed to get out of town occasionally, for one or two days around dialysis.
By around dialysis, I mean that leave for our mini holiday accommodation (usually a hotel about an hour away) straight after dialysis on Wednesday night. We spend the night and have breakfast and a leisurely Thursday morning there, then, around lunchtime, we return for my afternoon dialysis. At the end of dialysis, we go back to the hotel (all in all about a 4 hr round trip). We then spend Thursday night and all of Friday at the hotel (no dialysis Friday) and check out Saturday morning in time for midday dialysis.
Basically, this gives us three nights away, with one (shortish trip) to dialysis in the middle.
Works for us!
A couple of weeks ago we did this to go to a flash hotel in Healesville and had a great break.
I even went for a swim in the pool! I haven’t done that for about five years when we went to Bali. Back then it was a private pool attached to our room, so there was skinny dipping. But not this time. Lots of oldies there in bathrobes: a naked body may have caused a heart attack – and not just mine.
The other thing I enjoyed a lot was the breakfast: free and as many courses as you like. For me, that’s gotta be the best part of the stay.
Naturally, we are always on the lookout for a mini holiday.
But they don’t all turn out as expected.
About six months ago I was invited to speak a renal conference in Bendigo (about two hours north) on the consumer’s viewpoint of dialysis. Julie and I thought about it. It would be a great opportunity for a break: we could go the night before, maybe I even dialyse there and stay another couple of extra nights, for a real getaway. So I said yes.
Then. about two months before to conference, Liam (our no.2 son) who was turning 40, sent out an invitation for all and sundry to go to his birthday party, to be held on Cypress, in the sunny Med (he lives out that way). So our daughter Katherine and her husband asked if we could look after the kids if they went too.
Of course, we said yes.
I wasn’t great timing. It meant we were looking after them on the day I was speaking in Bendigo. No mini holiday now. We would have to get up early with the kids, drive to Bendigo, I’d talk and drive home the same day.
As the conference approached, I spent more and more time working on the speech, which was playing hard to get. Sometimes a little unwell, cursing that I had accepted, and I even considered weaselling out. Looking after the kids was a good excuse. But Julie encouraged me to stick with it (she can be very persuasive).
Then, two days before the speech, I came home from dialysis with AF (Atrial Fibrillation) and was quite weak and useless. Good excuse not to go? No says Julie, let’s wait and see. The AF went away the next day.
As expected, three days before the conference the kids came to stay. About 4am the morning of the conference, I woke up to the kids crying – there was a blackout and their comfort lights had gone out. We lit a couple of candles. Then I checked our alarm – it had reset to 5am. If the kids hadn’t cried, we may have slept in and missed the conference anyway!
Julie and I both set our phone alarms.
Up about 6am. Organising and shepherding kids, we left about 7am. We arrived with 15 minutes to spare. I checked my notes, sat and waited until the previous speaker finished.
I walked to the lectern and looked at my notes. The first page was missing. Great…
Luckily, I remembered most of what I was to say. After a little heart flutter, all went well. I delivered my speech, left the stage, and called Julie. She arrived with the kids 10 minutes later and we drove home.
Not the break we’d imagined.
But a week after, I had an email from the organiser. They loved the speech. Lots of praise. Would I like to speak at the next conference, to a larger audience, in June? Only thing, it is in Auckland (New Zealand).
Hmmm. Maybe this could be the Bendigo holiday, done right? I could arrange holiday dialysis for a day or two Auckland. I’d need to be a lot fitter and stronger to travel: working towards this trip could be a good incentive. So I said yes.
I started my first gym session in three months today. I walked on a machine for seven minutes, rode a bike, rolled around on the floor, did some pretty pathetic sit-ups and we went home. Sound like a good start to me.
Now I’m looking forward to NZ!
Getting away on a mini holiday is not always easy, but, with a little thought and perseverance, like life, it can be delightful.
Just a quick update on the state of play with the new holiday dialysis review website.
For the last few weeks, I have been focussing on raising its profile. There is only one way to lift the review numbers: start broadcasting the TravelDialysisReview message.
I began with emails and mailouts: emails to Renal and Nephrology Associations, asking them to forward the details to their members/patients.
I also mailed out explanatory sheets for noticeboards and business-sized cards for patients to take home, direct to selected holidays units. Yes, via snail mail.
I’ve had some pleasing and enthusiastic responses from various units, and also from the RSA, with front page coverage:
But it is still early days for the website, mainly because relatively few people know about it, and those that do will mostly write a review next time they travel.
So how to get the word out and start getting reviews – now?
Based on some advice from Matt, one of the original developers (we are working together), we decided to look at other ways of lifting the site’s profile. We started with social media – in particular, by dipping our toes into Facebook.
I did some research and found (34 at last count) great kidney and dialysis Facebook Groups.
As you can see, some are big, like Kidney Support: Dialysis, Transplants, Donors and Recipients, with more than 17,000 members and some are smaller, specialist groups, like Dialysis Traveller, with 400+ members.
They All are active sites, with lots of chat and discussion.
I have joined a few and posted stuff, with some good responses.
This week we launched the TravelDialysisReview Facebook page, which links to the Review website and this blog. We’ve shared the new Facebook page with several of the existing groups.
Again, there have been enthusiastic responses and it is definitely worth the effort. But I don’t need to tell you what a black hole social media can be if you let it, so I’m working out a plan to gradually expand to more groups with regular posts and responses, and hope to kick things off in a week or so.
We also implemented the Google Analysis and Google Search tool to measure how often the site is visited and how people are finding it. Learning new skills all the way.
If all goes as planned, we will also launch a Twitter page in the near future. If I can keep up with all the feeding and watering…
Letting the dialysis world know about this website has become quite a project, with a hellava a learning curve… but it’s not the main objective.
The main game is to get people leaving reviews.
For instance, if everyone who reads this blog – about 10,000 people month – called up the website and left a review about any dialysis holiday they had, Wallah! 10,000 reviews. That’s not including the Facebook readers and the email and mail recipients.
So ten per cent of that’s the target. 1,000 reviews in a month. Could we do this? is that possible? Maybe. Should be.
It won’t be through lack of trying.
Tuesday 24 April’s Age newspaper had a story about some new silo art, created just in time for Australia’s Anzac Day on the 25th. It showed two medics, one from the past (WW1 nurse) the other from pretty-well right now (medic working in Afghanistan). They were enormous and looked fabulous.
Julie and I had a free weekend coming up after my early (6:30) dialysis, so we decided we’d go and see them in the flesh (so to speak).
Silo art is relatively new. In Australia, it started in Western Australia in 2015, with the Avon silos in the WA Wheatbelt, a gigantic area north and east of Perth.
For the uninitiated, the silos I’m talking about are mostly concrete and were built 60-100 years ago to collect grain from the surrounding wheat fields and to load it onto trains that take it to cities or ships for consumption or export. Changes in agriculture, combined with the closure of railway lines, has left hundreds of grain silos in regional Australia abandoned.
These silos have been reused for various community activities, like film projection events, using the concrete silo walls as a screen; cellular or telecommunications towers, or for storage by private companies and farmers.
But by far the most delightful use is for silo art. Since 2015 silos in most states have been painted with a huge variety of artwork, from endangered native animals to real people who live and work in the area.
A quick search on the net shows that Silo Art Tours are becoming very popular, with maps and commentary for most districts. But we wanted to see the latest addition to the collection, not yet on any tour guide, at Devenish, pop. 300, about three hours from Melbourne (and 20 minutes from Benalla).
Art Bonus! When we checked the Benalla website, we discovered that Benalla is a pretty arty city in its own right. Every year since 2015, they hold the Wall to Wall Street Art Festival, where some of the country’s and the world’s best street artists paint the walls of the town and turn it into the street art capital of regional Australia.
Silo art AND street in the same weekend, on one tank of fuel. Sometimes you just get lucky…
So, Saturday morning about 10am, Julie picked me up from dialysis, bright, and perky and full of newly cleaned blood, and off we went. Straight up the Hume Freeway and about 2.5 hrs later we arrived in Benalla and checked in to our motel.
First stop the local bakery for coffee and cake. Excellent. Next, we start the art walk. Fantastic! Here are just a few we found on our rambles.
Dinner at the local pub and a good night’s sleep. Breakfast at a very nice little café; checkout and we head north to Devenish. But wait, there is also silo art on the way, at Goorambat, a few km south of Devenish.
We arrive at Goorambat and the silos, nestled by the railway, dominate the small town. Two artworks, both endangered species: a river redgum and the barking owl. Very impressive. While we’re looking, a grey nomad from a caravan pulls up. We get to talking. There is more silo art just north of Devenish, at Tungamah. Worth a look while we’re here.
Now to Devenish, just a few km up the road. Again, the enormous bulk of the silos are visible from quite a distance. At last, we arrive, joining quite a few others. One look at the silos and we realise that the photos we’ve seen don’t do them justice. Rising 20 metres (65 ft) skywards they are huge and beautiful. (And judging from the way the pub is being frequented, they have done wonders for the local economy.)
The artist, the appropriately named Cam Scale, comes from Melbourne. It took him 11 days to complete both paintings. Amazing.
After coffee and cake at the pub (they have only recently learned how to make it), we set off for Tungamah, 10 km further north.
This time it takes a little searching, but we find it eventually. It’s birds: a huge kookaburra and brolgas dancing in a wheat field. Great to see, but for us, the nurse and medic take the cake.
By 1pm, we’ve seen all the silo art there is to see around here. Gratified and delighted we turn south and head for home. But this won’t be our last silo art tour!
ps: If you want to see some more beautiful silo art, check out the Australia Post silo art stamp set, due out on 21 May 2018:
In memory of Merle, Rest in Peace
I have long thought we BigD-ers need a website where we could go for entering and reading simple reviews of holiday dialysis sites.
First, back in March last year, I thought, “Maybe I can build one!” So I had a go using WordPress Themeshop, after lots of emails from “helpful salespeople” but that was too complex. Then, in May I went to an online jobs site, where you pay experts to do this stuff for you. That was a waste of money. It took days to find someone who understood what I wanted and didn’t want the earth to do it. Once I chose someone, he was never available. It was not a good experience.
Swinburne University Community Collaboration
Finally, a friend told me about university community collaborations, where I could possibly work with IT students as part of their course, to help create and launch the site. I live close to Swinburne University, so I checked out the website, found the name of the Manager, Collaboration and Partnerships, and filled in the application form.
Sarah, the Manager, came back to me quickly, saying she was talking to relevant IT academics to see if this could fit as a student project. After several meetings, the project got the go-ahead, as part of the IT Semester 2 course! Winner!
Over the next five months, I met the students Matt, Angelo and Mitch, and their Supervisor, Janet. We had regular meetings, first to confirm the design and later to agree on how the system would look. They produced design documents, development and implementation plans and more. But most importantly, the developed the website.
And it is beautiful to behold.
Once the Semester was over, they presented it to a range of Swinburne IT academics and their peers, to great acclaim.
And they Invited me along, so I took photos, drank coffee and ate cake. To me, it was a double celebration: of their excellent coursework, of which they are justifiably proud and for BigD-ers around the world, the all-singing-all-dancing TravelDialysisReview website was born.
We uploaded the system in December, ready for release. However, it had no reviews, and it needed a few so that everyone could see how it all worked.
Then disaster. I caught a bug and developed heart problems (as per my previous blog entries) and was admitted to hospital. TravelDialysisReview website progress ground to a halt. Until now, more than eight weeks later.
While I’m not 100% well, for the sake of expediency, I think it’s time I just put it up and made it available to all. I had hoped to have a few more reviews and maybe a couple of small training videos to show how it works, but they can wait.
Quick User Guide
In case you missed it at the top. the site address is: https://traveldialysisreview.com/index.php
If you want to find a review, you can search for the unit by city, suburb, country, unit name or address. If the unit has been registered, it will appear in a list. Click on the name and go to the review.
If the unit is not listed, you can record a new unit details (though you need to register first). Fill in as much as you can and leave any missing bits for others.
Once it’s recorded, you can enter a new review for the unit (you also need to be registered for this). Enter an overall rating out of 5, with side ratings for Comfort, Quality of Care, Cleanliness and Ease of Booking (also out of 5). You can click on each heading to get a quick summary of what you are rating. Finally, add at least 20 characters about the unit.
Enter as many units and reviews as you like. Each new review appears at the bottom of the main screen after moderation. I promise moderation (checking for things that will get me sued) will be quick.
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. (more…)
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.
…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,
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 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…)
As 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…)