Getting away: not always easy!

Over the last six months, we have managed to get out of town occasionally, for one or two days around dialysis.

Mini Holiday!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!

 

Healesville

Beautiful Healesville

A couple of weeks ago we did this to go to a flash hotel in Healesville and had a great break.

Healesville swimming pool

Just before my big splash

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.

Bendigo from the car

Bendigo from the car

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.

 

How to Manage Fatigue

Am I fatigued, or just exhausted?

Fatigue1All 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.

Exhausted manOn 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.

ActiveSchedule 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.

Pump it higher!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!

The BeanThis 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.

Purple House – life-saving, community-saving, inspirational or all three?

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.

Sarah brown 2

Bringing life-saving dialysis to the bush with Sarah Kanowski. Sarah Brown always wanted to be a remote area nurse. Then she began a medical revolution 51mins 25secs, Wed 3 Oct 2018

 

Just a reminder: Western Desert Dialysis reaches 18 communities

18 Communities Strategic Plan

Part of Purple House’s 18 Communities Strategic Plan

 

Purple House Alice Springs

Sarah Brown in front of the purple walls of Western Desert Dialysis in Alice Springs

On dialysis at the Purple House

On dialysis at the Purple House

 

Your chance to make a difference to Renal Care

Make a difference

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.

Time commitment

  • 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.

Contact Details

Maree Branagan
Project Lead
Renal Clinical Network
03 9096 2676
renal.clinicalnetwork@safercare.vic.gov.au

Go for it!

More Information

My itch has a name – and it’s not Scratchie

BackscratcherThe 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.

Reactive Perforating Collagenosis

Reactive Perforating Collagenosis

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.

Cause

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.

Treatment

The big one is to completely avoid scratching the affected areas.

But when it gets crazy itchy, the question is how?

Creams

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.

Phototherapy

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:

  1. 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.
  2. 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.

A day out triggers some not so tasty memories

IMG_7334It has been a cold, wet and blustery day here today, with wind and hail coming directly from Antarctica. Just the day to go down to the bay, drink coffee, and check out how the waves and ships handle the weather. We decided on St Kilda pier kiosk, a delightful little café at the end of an about a kilometre of pier jutting out St Kilda Pier cafeinto the bay.

The walk there was like a gym workout, struggling against the blasting wind, hardly able to keep our feet. But we finally arrived and despite our many fellow travellers heading in the same direction, we found terrific seats at a window facing the ships anchored in the bay.

IMG_3178We ordered coffee: Julie a skim milk, decaf latte and (despite me only ever ordering small coffees) I ordered a large flat white (mainly to help me recover my breath and body warmth). And a lamington to share.

We had a lovely time.

IMG_3180When I finished my lamington (I’m not supposed to eat too much chocolate, so I always leave a few crumbs as a sop to my conscience) the sight of the leftovers on my plate triggered a long-repressed memory.

About ten years ago, Keely, one of Julie’s nephews, came to live with us. He had grown up with his mother in Queensland and decided he would move to Melbourne to find a job and maybe continue his studies.

Like every 18-year-old (then and now) he lived on the computer – our computer. One time, after quietly waiting for him to finish whatever he was working on, he logged out and left. I jumped into the still-warm seat and called up my current work. I had been eating a lamington at the time, so I put it (on a plate) next to the keyboard. As you do, I slowly ate the lamington as I worked. When it was all gone, I noticed coconut crumbs on the keyboard, so I started picking them up and eating them. Finally, I picked up quite a large piece and started chewing. It was hard and sharp. It took it out and looked at it. It wasn’t coconut, it was a chewed off fingernail. Keely’s fingernail. I spat and spluttered any trace of it into a tissue and told Julie. For some reason all she could do was laugh.

Which reminds me of another Keely-activated adventure. I was sitting at the kitchen table, about to eat a biscuit and drink some afternoon tea. As usual, I forgot to get my phosphate binders from the kitchen shelf. On the way there I noticed one sitting conveniently on the bench next to the table. So I picked it up, popped it in my mouth and had my afternoon tea.

what-causing-persistent-cat-cough-501064295I thought nothing more about it until Keely came home that night. In front of everyone, he said to me, Hey, did you see the white pill on the bench? Yes… I said, with the start of a bad feeling. Oh good! said he: I put it there. Mitzy (our cat) was trying to swallow it and kept sicking it up, so it I thought I’d put it out of reach. What! said I. What’s the problem says he. I ***ing ate it, that’s what!

Again, no sympathy from the rest of the family, just laughter.

I waited a week or so to make sure I hadn’t got feline enteritis or something before I started to see the funny side.

Ah, happy memories on a cold and wintry day.

Dialysis: a Heartfelt Journey

Without dialysis, I would have been carried off long ago. With dialysis, I’ve been able to draw out the carrying off bit for 23 years and still counting. It’s a constantly changing situation;  one that keeps me on my toes.

That’s not to say there aren’t challenges.

As I’ve said many times here, it’s rarely the dialysis or kidney failure that kills you. It’s usually your heart, gradually weakened and damaged by the constant (and sometimes very large) changes in fluid volume it has to deal with between dialysis sessions.

Now, true to form, after my last prolonged stay in hospital in December, my heart is giving me a bit of stick. However, it’s not so much weakness as blockages in my arteries. And not by any old cholesterol plaque; oh no, my blockages are calcium, slowly deposited in my veins and arteries. This happens after years of the ongoing battle between calcium and phosphate, caused by my missing kidneys. The last doctor I saw put it succinctly; he said I have crunchy veins and arteries. Nice mental picture.

Anyway, the blockages are slowly growing, and for a range of reasons, I’m not a good candidate for either a bypass or a stent. So my heart is being managed medically, with a range of drugs designed to slow or minimise further blockages.

One of the side effects of this new, weakened heart is that I get puffed quickly, and when stressed, my heart feels a little strange. So I have my trusty Glyceryl Trinitrate (GTN) spray. A quick spray under my tongue relaxes and widens the crunchy veins and arteries in my heart and the rest of my body, making it easier for it to pump, and I’m ready for more action. I don’t use it all the time, just if I’m exerting myself, walking up hills or in the gym or trying to keep up with the grandkids when we walk to school.  

But just recently I’ve noticed a couple of new twists, that need new thinking and acting on my part.

Breathing vs Sleeping

For the last 6 months, if I’m more than about a litre overweight (say at the end of a morning dialysis day, or a full non-dialysis day), when I go to bed, I wake up around 2am gasping for air. It seems that when once my heart would brush off the effects of a litre or more, now it can’t handle it so well. During the day, instead of being distributed around my body, the extra fluid goes to my legs and at night after I’ve been horizontal for a while, to my lungs.

I mentioned it to my Cardiologist and he put me on GTN patches, to wear at night. Mostly they work a treat and I sleep like a baby.

Mostly. There are still a couple of nights, after my two days off, that I put on more than a litre, and the GTN doesn’t cope. I wake up at 2 am or 3 am out of breath. On these nights I go to the living room or the office and sit up for an hour or so until my legs fill up again. Then I go back to bed. It works pretty well, but it’s a drag.

There are a couple of things I’m trying to get back to a full night’s sleep. Firstly moving most of my dialysis times the evening, so I’ll be dry most nights and sleep well. Also, if I limit my fluid intake on my days off, to less than a litre, I should make it through those nights too. This seems to be working.

A stronger patch may be another option. I’ll talk to my cardiologist at my next appointment. It could be a simpler answer, hopefully with no extra side effects. With my current patch, when I first wake up, I feel a little weak and lightheaded and it takes me a couple of hours to get my energy back.  If I go to a stronger patch, these side effects may get worse.

Base Weight and AF

Again over the last 6 months, in what is obviously a related problem, my heart began slipping into AF (atrial fibrillation) when I was on dialysis. Like after last Wednesday’s run, I felt a little strange when I came off, but thought little of it.

When I got home and sat down, my heart jumped into AF so violently that it felt like a heart attack, and Jule and I went to the Emergency Department. After blood tests, they reassured me that it was only AF. They contacted my Cardiologist, who changed my medication to make it harder for my heart to go into AF. I spent the night in the Short Stay Unit and went home around lunchtime the next day.

Still, this was pretty scary. Rather than keeping me healthy, dialysis was giving me AF, (which can take hours or sometimes days to revert). I quickly realised that if I didn’t want to have to choose between dialysis and AF, I needed to take some action.

After experimenting, I think I have worked out why and how to stop it. It’s all about making sure I don’t strain my heart, by going too far or too fast below my base weight during the run.

It seems to happen only when I have a small amount of fluid (less than a litre) to take off. (I have been deliberately low on fluid so I could sleep at night.) When the nurse adds my drinks and washback allowance, the UF rate means that sometime during the second hour I have taken off more fluid than my base weight. This continues until the end of the session when I get my washback.

My heart doesn’t like any of this and reacts by going into AF.

So now if I’m taking off less than 1 litre, I either run in (where both lines are connected at once and I get about 300mls of extra saline before the actual dialysis/UF begins) or I add 300-plus mls of saline after the first hour and add the same amount to the UF remove, so they cancel out.

Either way, adding more fluid helps keep my weight above or near my base weight, which ensures a gentler UF and my heart is happy and unaffected.  

So now, mostly, I come off healthy, relaxed and ready to rock.

(Of course, since these problems are related. I could simply arrive with a litre or more fluid on to take off, and eliminate the AF problem, but that may make it harder to sleep at night. It’s trial and error. If I can sort out the sleeping/gasping problem – with patches or whatever – I can also solve the AF.)

It just goes to show that healthy dialysis and a trouble-free heart are the result of constant vigilance.

Transplants – the FDA Asks Patients

I was reading an article the other day about the 25th BIO International Convention – for biotechnology R&D organisations worldwide – held in Boston, early this month. I read this stuff to find out the latest in research about new products that may be useful for us BigD-ers, or (more likely) those who are facing dialysis sometime in the future.

FDAWhat caught my eye was a summary of a “Town Hall” session with the FDA (the US Food and Drug Administration), who manage the development and release of drugs, vaccines, biological products and medical devices for US humans. The session was a forum for senior FDA officials to meet with industry representatives.

Dr Janet Woodcock,One of the speakers was Dr Janet Woodcock, the head of the FDA’s Center for Drug Research & Evaluation. At one point in the session, Dr Woodcock was asked what she was currently most excited about.

Three things excited her. The first two were about a new type of drug development, and advances in manufacturing.

Patient-Focused Drug Development

But the third was a big surprise: She is very excited about patient-focused drug development, which “will really be a force over the next decade,” she said. “We can’t even estimate how strong this will be. The patients are on fire. They are getting into the tent all the way.”

I’d never heard of patient-focused drug development, so I Googled it. The first thing that came up was the FDA site Patient-Focused Drug Development: Disease Area Meetings Held over the last four years. It summarised 24 patient-focused meetings to get the patient viewpoint on specific diseases and their treatments.

Patient-Focused Drug DevelopmentThe meetings enable the FDA to gather and record patient experiences and insights about each disease and to use these insights as key design criteria for new drug development. This wonderful initiative is a direct outcome of the ePatient movement that has grown to prominence over the last decade.

While the primary beneficiary of being an e-Patient has always been the patient, organisations around the world have come to understand the benefit of talking to and listening to patients has created a powerful new health resource that can dramatically improve patient care.

VoiceI cast my eyes down the list to find something kidney related, and halfway down, there it was: Patients who have received an organ transplant.

I clicked on Meeting Report and downloaded 12-plus pages of excellent patient discussion (many of them kidney recipients) of their experiences and perspectives on managing their health post-transplant.

Patient meetings

The meetings covered two topics:

Topic 1 – Post-Transplant Health Effects.

Findings: For some participants, the health effects they experienced were described as being manageable and tolerable. Others said they placed a significant burden on their overall health and well-being.

rejectionPatients were asked to describe the most worrying impacts of their organ transplantation on daily life. In response, they… highlighted organ rejection, cancer, and infection. And many who had not directly experienced these effects described them as being their biggest worries for the future. As one patient said, “while others may breeze out the door in the morning, I am already preoccupied with preventing rejection, infection and cancer.”

Overall Impacts on Daily Life

Participants shared numerous perspectives on how their lives had changed post-transplant. The most commonly mentioned impacts on daily life included:

  • Concern for the future
  • Emotional impacts
  • The burden of managing day-to-day life
  • Social impacts.

(See the report for more detail)

Topic 2 – Transplant and Treatment Impacts

Here, patients spoke about the effectiveness of their treatment programs, their experience with immunosuppressants, the side effects they had experienced, and the impact of their treatment on daily life.

Detailed and frank patient experiences with prescription drugs, treatment downsides, clinic visits and monitoring, adherence to medications, non-drug therapies, and other types of treatments are set out in the report, and well worth a read.

Outcomes

As set out in the Conclusion, the workshop produced two valuable outcomes:

1.      Patient opinions on ideal treatments for organ transplantation

Based on this opportunity to come together and discuss these topics, patients have also developed a range of what they see as ideal objectives for transplant treatments, to help inform the processes of the FDA, the organisation that has the most say in their development:

Patient-Focused Drug Development2

New approaches are needed to improve the long-term success of transplanted organs, to prevent and treat antibody-mediated rejection, to individualize treatment, and to reduce the adverse reactions associated with immunosuppressant regimens.

2.      The value of Patient Involvement

Even more encouraging is the recognition of the value that patients have to offer:

Patient perspectives play an important role when considering how to best facilitate drug development post-organ transplantation. These perspectives also inform how patients view the benefits and risks of various drug products in the complex area of post-transplant treatment.

ePatientPatients…  provided a vivid examination of the challenges and burdens facing patients who have received an organ transplant… The meeting… provided FDA with the opportunity to hear from patients and caregivers first-hand the impact of organ transplantation and post-transplant treatment regimens on patients’ lives.

The FDA recognizes that patients have a unique ability to contribute to our understanding of their condition and treatment management, which is important to our role, and that of others, in the drug development process.

From what better perspective is there to offer ideas and input to the development of long-term success of transplants, the prevention and treatment rejection, personalised treatment, and the reduction of adverse reactions to immunosuppressant drugs?

And this from just one of the 24 patient-focused meetings.

No wonder Dr Woodcock is excited. So am I.

TravelDialysisReview – telling the world!

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.

1-IMG_6916I 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:RSA

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?

Social Media

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.

17k groupAs 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.

Dialysis travellerThey 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.

TDR business FB pageAgain, 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.

 

A weekend away looking at big art

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.

Phlegm, CBH Avon grain silos.

Avon Silos

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.

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World map cow

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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.

 

1-IMG_E68021-IMG_E6801Now 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.)

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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.

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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:

Australia Post silos

In memory of Merle, Rest in Peace