It’s all pretty simple and easy to use: Booking dialysis is a lot like booking a hotel on Bookings.com.
Today, along with thousands of other non-Muslim Australians, Julie and I visited the mosque nearest to us (in Preston) to show our solidarity and express our sympathy.
When we arrived, we were delighted to see long lines of visitors’ shoes, a swathe of flowers and hundreds of mostly white Australians walking barefoot through the mosque.
Some were silent and thoughtful, others were talking to individual worshippers. All in their own way expressing their horror of the Christchurch massacre and their solidarity with the worshippers as fellow Australians.
Most of us had never been inside a mosque before and would have been rather self-conscious talking to Moslems we didn’t know. Now that barrier has dissolved and people of both sides felt the warm glow of finding new friends.
Julie approached one youngish woman in a veil, standing at the entrance to the women’s prayer room. They chatted about Christchurch for a few minutes, then Julie asked her if she experienced intimidation or racism in her day to day life. The woman went quiet and looked uncomfortable. Then she said quietly “On public transport”. Julie apologised and said that maybe this will change because of this catastrophe (not entirely believing it).
That’s because it’s up to us to stop it if we can. If we are brave enough. I have heard of a low-stress way to help stop abuse on trams, buses, etc. If someone is being abused, ask them if they would like to come and sit with you. Often most of the other passengers will make room for them and form a barrier to further abuse. There’s strength in numbers. It’s worth a try.
Perhaps the only good thing that will come of this massacre will be an improved relationship and acceptance between our peoples, the exact reverse of the perverse thinking that triggered this terrible crime.
I know Julie and I do.
About six months ago, B.Braun took over all Diaverum dialysis units in Australia and New Zealand.
Since then, much has changed in our Unit: admin, HR and IT systems. But the biggest change for patients has been the arrival of all new singing and dancing (maybe not dancing) dialysis machines and weighing scales. Why replace everything? So that the new equipment could form a new network, linking machines and scales to the IT System and the patient records.
Now each patient has a card they put into a slot at the scales before and after dialysis. The before weight is combined with the patient’s online dialysis prescription, to load and set up their machine. The after weight records their post-dialysis weight in their record.
But what happened to the old equipment you ask?
The machines were a mixture of new and old Gambro machines – Artis, AK200s and AK 200 Ultras. While the Artis machines were sold, the AK200s etc were stored in the basement, along with the almost new weighing scales. For months, gathering dust.
Until, at the Unit’s end of year Christmas Party, some patients asked the question: what are we doing with the old machines?
Chris, our Unit Manager, was keen to use the space, and there seemed to be no plan for their disposal. The option of landfill loomed large.
I happened to know of a Rotary program for recycling/reusing discarded medical equipment, usually for developing countries. I contacted Bob Glindemann, the Manager of Rotary’s Donations In Kind (DIK) Program. He was immediately excited about the value of the machines to many of his client hospitals.
Yesterday, it all came to pass. The Rotary Pick-up van arrived. Two strong and enthusiastic men loaded the machines and the scales and took them to the DIK warehouse in Footscray.
Like Marie Kondo, we thanked them for their service and waved goodbye with heavy hearts.
Now it’s Bob’s role to identify recipients in the Pacific, Africa and the Middle East in greatest need, who are equipped to properly use and maintain them. (Medical equipment donations are expensive for hospitals to receive; the initial equipment value is often only 20 per cent of the total lifetime cost of the equipment. The remaining costs are based on the need for consumables, spare parts and maintenance for three to five years.)
So it takes time to find the right hospitals. But certainly, within the next few months, our dialysis machines will be wending their way across the world to the right hospitals. Hospitals with medical staff who can use them to help reduce the needless suffering and deaths of the thousands of people with End Stage Renal Failure who currently have no access to care.
Now That’s a Win!
I have a friend, George (not his real name), who, apart from being on dialysis, has an unusual bursa problem. Talking about it with him, it occurred to us that other people may have the same thing and have some advice about how they manage it.
The problem is with his infraserratus scapula bursa. A bursa is a thin cushion of lubricating fluid located at a point of friction between a bone and the surrounding tissue/bone. George’s problem is the bursa just below his right scapula (that is just below the wingy part of his shoulder). Its job is to lubricate where the shoulder rubs against his rib cage.
In his case, his bursa decided to fill itself with fluid, to the point where it has become a 150ml-plus bag of fluid extending down the right side of his back. At first (when it was small and manageable), his local doctor worried that it was cancer, so he was referred to a specialist surgeon, who ordered an MRI of the area. It identified the bursa as the problem, so his cancer worries disappeared.
But how to deal with the bursa? It was not painful, just annoying and embarrassing. After some detailed research (using Dr Google and his army of medical partners, here and here), he discovered that it probably began as an overuse problem, following 20 years and hundreds of hours extending his right (fistula) arm for dialysis. This is not a common problem, but it is (yet another) known outcome of long-term dialysis.
As an interim measure, the surgeon drained much of the fluid and sent him home. Over the next three years, he had several Cortisone injections aimed at stopping the fluid flow and the bursa drained about once a month. Nothing worked: it just kept coming back, each time a little larger. It is now interfering with his sleep (and dressing – T-Shirts especially!). He finally decided to see if there was a better way to deal with it. He saw several specialist surgeons, most of whom recommended removing it surgically.
The trouble is that as a long-term dialysis patient, George has all the co-morbidities associated with that: AF and other heart problems, compromised immunity, bleeding and general fragility that makes an operation quite dangerous. After long discussions with his Cardiologist, he has decided to wait about six months. He has been told that the bursa may reach a certain size, then stop growing (when the fluid pressure on the bursa bag holds back the production of more fluid). This is not certain, but he’s giving it a try.
If it does not stop expanding, then his Plan B is to risk surgery.
But even though it is rare, surely someone has or had something similar. And perhaps they have found a better way to manage it. That’s why he decided to put his story on BigDandMe, to reach as many dialysis patients as possible, and maybe find another way to deal with it.
So if you can help, or know someone who may be able to help, please add what you know to the comments, or email me directly (see About).
Who knows what can be achieved with the power of crowdsourcing!
George’s bursa was aspirated (drained) a week ago and the doctor collected 220mls of fluid and blood.
It seems that there is no limit to how big the bursa can get. George has now decided to talk to a surgeon about having it removed. But he is still keen to hear from others who have experience with this kind of problem and would appreciate any further feedback or advice.
This the story of how we (the Green Nephrology Action Team and Swinburne University) developed a new logo (and soon a new website) for GreenDialysis.org.
The fun thing was that soon after the designs were finished, Julie and I were invited to the Design Exhibition and Awards Ceremony for the Swinburne Advanced Diploma of Graphic Design course, which delightfully and unexpectedly, included many of the new logo designs (see the pics sprinkled throughout!).
I have always been uncomfortable about just how resource-hungry dialysis is: the mountains of plastic waste, lakes of water and Megawatts of energy needed for its delivery.
So, when I went to a renal conference in 2017, I was delighted to find that I was not alone and that many people were doing exciting work to help make dialysis more sustainable.
Way back in 2003 the leading light of the Green Dialysis movement, Dr John Agar (Google him), was doing amazing things at the Barwon Health Renal Services in Geelong (about an hour down the road from me), to save and reuse water, reduce power use and even find ways to turn all our bloody plastic lines into a concrete additive.
By 2014 he was publishing worldwide, both via Papers and his new GreenDialysis.org website.
By 2016, John’s lone preoccupation had gathered steam and had become a dedicated team. First as an informal group of various renal stakeholders, and then in 2017, as a formal working group of the Australian and New Zealand Society of Nephrology (ANZSN). as the Green Nephrology Action Team (GNAT).
After the conference, I contacted the GNAT Chairperson (Dr Katherine Barraclough) and asked to join as a consumer representative: a brief discussion and I was in!
New Logo, New Website
Over 2016 and 2017 the GreenDialysis website had been revamped and updated several times to include information about GNAT and more on various projects and initiatives. However, without a central website plan, people found the website a little approachable and wordy.
After several reviews, it was decided to completely redesign the website and to create a GNAT logo. Since I had just completed the new TravleDialysisReview.com website as a collaborative project with IT students at Swinburne University, I had a rush of blood to the head and volunteered to help create a new GreenDialysis.org.
I contacted the wonderful Sarah Cleveland, Manager of Collaboration and Partnerships at the Swinburne University, and after discussions, the Swinburne Design and ICT Departments agreed to help complete the new Green Dialysis Website project.
Designing the Website
They proposed breaking the project into two parts, with Advanced Diploma of Graphic Design students working on the aesthetics, visuals and graphics during Semester 2 of 2018, then handing over the selected logo and Website design to the ICT students for implementation on the website during Semester 2 of 2019.
Thanks to the excellent Hue Pham, Swinburne Graphic Design teacher and supervisor, all the design work has been completed for the new logo and the new website. They have done a fabulous job – as shown in the exhibition shots, and in more detail on the Voting Page.
The GNAT Team has voted for what they consider the best logo. They will vote for the best website in January (the best logo and the best website design are selected independently).
Your Vote for the best logo!
Here’s a sneak peek at the new logo designs. I thought you may like to vote for the best too (a Peoples Choice Award!). If so, go to the Voting Page and make your selection. No prizes, just a nice warm feeling.
I look forward to seeing your votes!
The new website design will be selected in early January. Look out for another sneak peek then.
Oops. The voting link doesn’t work properly on some platforms, so you can now also vote directly, below. Cheers!
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.
Am I fatigued, or just exhausted?
All of us BigD-ers feel weary at times. I’m often most tired just before I dialyse. Some days I arrive at the unit, dragging one foot after the other, dead tired. Putting my needles in can be as marathon effort. And once I’m on, I sit back, suck a couple of ice cubes, close my eyes and I’m in dozy land.
But half an hour later, I wake, bright and rested.
Thinking about it, most times I’m physically tired from my physical activity throughout the morning – my early morning walk, house stuff, running around, computer work. By the time I get to dialysis, I’m exhausted and ready for a long sit-down. And the sit-down solves the problem.
On the other hand, fatigue is a lingering tiredness that is constant and limiting. With fatigue, you have unexplained, persistent, and relapsing tiredness, that is not relieved by naps or long periods of rest. So how can we manage fatigue?
Guest post: How to Manage Fatigue
This pithy and practical guest post is from Constance Peng, Provisional Psychologist / PhD student at the University of NSW in Sydney, Australia. It has some great advice and ideas to help us BigD-ers put a little more energy into our day.
At least 60% of dialysis patients say they often feel fatigued
Fatigue makes it difficult to participate in enjoyable and meaningful activities, can lead to depressed moods and overall poorer quality of life. If you are one of the 60 per cent, and your doctor has not identified any medical reasons for your fatigue (e.g. anaemia, hyperparathyroidism), then it is worth thinking about making some lifestyle changes.
Studies have shown that dialysis patients who have poor sleep and are physically inactive tend to experience more fatigue.
Some tips to help you improve the quality of your sleep and increase your physical activity
Go to bed and wake up at the same time every day (even on weekends). This will train your body to know when it should be asleep.
Limit your daytime naps to 30 minutes and have them before 3pm, unless your doctor advises you to nap more often. Try not to nap during your dialysis treatment. However, if you do, remember that napping excessively during the day makes you more awake at night.
Sleep only when you are sleepy. If you cannot fall asleep within 20 minutes, get up out of bed and do something boring until you feel sleepy.
Schedule in daily exercise you can easily fit in between your dialysis treatments and other commitments. It can be as simple as 15 minutes of slow walking, stretching or gardening. Stick to this no matter how tired you feel.
Practice pacing. If you try to do too much on days you feel good, then you will feel too tired the next day to do much. This is a called a “boom and bust cycle” and you will end up doing less over time. Instead, aim to gradually increase your physical activity over time. For example, you can increase the length of your daily walk by five minutes every fortnight. Stick to this plan no matter how tired or energetic you feel.
If you would like further information on how you can tackle fatigue by changing your behaviours and patterns of thinking, it may be worth speaking to a Clinical Psychologist, who can explore the underlying causes of your fatigue and use effective techniques to help you get more out of life!
This article first appeared in The Bean, the newsletter of the Concord Hospital Renal Unit, Concord, NSW. Thanks, Constance for sharing it with us!
If you would like read more of The Bean, or sign up, click here.
I fact it’s so much more! I wrote about this amazing group of people, led by the fantastic Sarah Brown in August 2017, and she and the House have gone from strength to strength.
But don’t just take my word for it. This astonishing interview on the ABC’s Conversations is just a glimpse of how she has changed the world not just for people on dialysis and their communities, but for all of us.
Just a reminder: Western Desert Dialysis reaches 18 communities
Community Service Announcement
Provide a Consumer Perspective to Renal Care in Victoria (Australia)
Do you have recent lived experience of kidney disease as a patient, carer or family member? We’re looking for consumers to join our Renal Clinical Network Insight subcommittee.
As a member, you will provide an important voice in strategic planning, support the use of evidence and data, and enhance the quality of kidney disease care across Victoria.
Safer Care Victoria’s Renal Clinical Network is currently looking for two Consumer Representatives to join their Renal Clinical Network Insight subcommittee and to participate in strategic planning to enhance care for patients with kidney disease across Victoria.
Key selection criteria
We are seeking two consumers who:
- Are enthusiastic and passionate about improving care and experiences for patients with kidney disease and their families across Victoria
- Have recent lived experience as a patient with kidney disease, or family member of a patient, preferably in both hospital and community settings
- Are able to focus on how to improve health care for a large population of patients with kidney disease
- Available to commit to the activities of the subcommittee, including attending face-to-face meetings and electronic communication.
- Participation in Insight subcommittee meetings, approximately every second month (generally 8.30am-10am Monday mornings, at Safer Care Victoria, 50 Lonsdale Street, Melbourne), as well as preparation and contribution to the subcommittee’s work
- Involvement in training sessions to support development in the role.
What do I need to know?
- Applications close Monday 22 October 2018.
- Applications will be reviewed by a selection committee from Safer Care Victoria.
- The final review process will involve face-to-face interviews, including an opportunity to clarify any queries
- Refer to the frequently asked questions on our website.
How to apply
Submit your application to Maree Branagan, Project Lead, Renal Clinical Network (details below), including a one-page cover letter, addressing your interest and relevant experiences that will help you to contribute to improving care for patients with kidney disease and their families across Victoria.
Renal Clinical Network
03 9096 2676
Go for it!
The dreaded itch is well known to most BigD-ers. Most people I know have a trusty back scratcher. Mine is made of bamboo and looks a little like a monkey’s claw. I’ve had it for at least 15 years – maybe 20. The scratching claws are smooth from much work, but they still do the job.
We all know the pleasure of a good scratch.
Most people will tell me it is a phosphate itch. They say my phosphate levels are too high either because I have strayed from my low phosphate diet, or I’m not using my phosphate binders right (ie, just before I eat). And most would be right – especially in the early years of dialysis.
So, after constant efforts on diet and binders, I managed to get my phosphate levels from a little high to excellent. And mostly the itch receded.
Life went on.
But now, after 23 years of dialysis, it seems that the rules have changed. Over the last few years, my itch has come back, despite my phosphate level being pretty good. And along with the itch, tiny bumps of skin started to appear, mainly on my back. “Little warty dots” my doctor called them (the technical term is lesions). They get very itchy and give off much pleasure when I scratch them. And with the excitement of being scratched, they expand (temporarily) until the memory of the scratch wears off.
Over the last couple of weeks, the tiny dots have also started to appear on my neck and chest. While this expanded the opportunities for pleasure scratching, I really didn’t like how things were progressing, so I asked my doctor for a referral to a skin specialist.
I already go to a skin specialist, but he’s into speed consulting. I go into a room, strip off and put on a gown. A few minutes later he steams in, and it’s out with the LED magnifying glass, looking all over me for skin cancers and brushing other things (including my queries) aside. A quick click at the computer and he’s gone. Wam, bam, thank you Maam.
So I decided it was time for a new consultant.
The new guy (and his wife) have just set up practice. He asked me questions, took the time to listen to my answers, then gave my skin a slow once-over. And then he gave me an answer.
For an unknown reason, sometimes people on long-term dialysis can extrude collagen, in the form of tiny, dry fibres out through their skin, usually on the back and chest. The lesions usually begin about pin-sized and with stimulation (scratching) can get up to 6mm (¼ in) in diameter.
It has a name, and it’s a mouthful: Reactive Perforating Collagenosis. Reactive to dialysis, perforating as in pushing up through the skin, collagenosis as in collagen in fibre form.
The DoveMed link has a good, no nonsense article about it: The majority of the cases resolve on their own without any treatment. In severe case, the treatment may include the use of topical creams and moisturizers, phototherapy, and antihistamines for itching.
Beyond having chronic kidney failure and long-term dialysis, the exact cause is unknown. But the appearance of skin lesions is triggered by trauma, especially scratching(!). And more scratching and cold weather makes the condition worse.
I think, in my heart of hearts, I knew I shouldn’t scratch my itchy back too hard. And sometimes I wondered which came first, the lesions or the scratching.
Now I know.
The big one is to completely avoid scratching the affected areas.
But when it gets crazy itchy, the question is how?
Anti-itch creams like Antroquoril (a moderately strong rub-on corticosteroid) helps stop the itch. It doesn’t treat the cause (what does?), but less scratching helps the spots calm down and maybe fade into the background (maybe).
My skin specialist prescribed it for me, and it’s working.
If the Antroquoril cream doesn’t make the grade in the longer term, he suggested I line up for the Phototherapy. There are two types:
- UVB phototherapy is irradiation with shortwave ultraviolet radiation. To treat the whole body, the patient, undressed, stands in a specially designed cabinet containing fluorescent light tubes.
- Psoralen Ultraviolet Light A is a combination treatment, where Psoralen (a light-sensitive drug) in cream form is rubbed on the skin to make it temporarily sensitive to UVA (long wave ultraviolet radiation). The skin is then exposed to UVA. The lamps stay on for increasing lengths of time, starting with about one minute and extending for up to half an hour.
It’s been a couple of weeks since I started the cream and I use it twice a day. There is much less itch (though I need a quick scratch every now and then).
Maybe, if things continue to improve, I’ll be able to retire my trusty back scratcher- or at least hang it out of site.