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.

IMG_2487

World map cow

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IMG_2504IMG_2463

 

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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IMG_E6812IMG_E6810

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.

1-IMG_6829

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

Not rehab, reconditioning

The last six months of hospital stays, bleeds, transfusions, infections and heart stuff has left me pretty scrawny and deconditioned – my enormous abs, legs and biceps are but dim shadows of their former selves.

But over the last few weeks, I have turned the corner.

My infection is under control (with horse-size doses of Clindamycin, a yucky-tasting but effective antibiotic. My bleeding and other mysterious blood disappearances have at last come to an end (mostly because I stopped taking the blood thinner Ticagrelor, which was poison to me). My AF is under control, with fairly large doses of Amiodarone. The almost-blockage in my right coronary artery won’t be stented or otherwise operated on (to remove the calcium lump I have patiently built up over years on dialysis). I am taking aspirin daily as a moderately effective blood thinner and maybe that will be enough. So far this has proved to be the case.

So there’s no need to be skinny anymore. At last, I can walk further than around the bed. This morning Julie and I walked about 3km (1.8m) around our block. It was no speed record, but I have been walking regularly now and as long as I don’t try to run up hills, I feel pretty pleased with myself.

legsBut Julie, being Julie, doesn’t think that this is enough, so I went to my local doctor, got a referral to a rehabilitation centre and made an appointment.

Julie and I went along a couple of days ago. The first step is to be assessed by a doctor, who then nominates a plan for reconditioning (yes that’s what its called) over the next 10 weeks. I imagined the assessment would take 5-10 minutes and I’d be outta there. But no, it took 1.5 hours and was the most thorough (and humbling) I’ve had.

It began in a friendly way, with the usual questions confirming who I was, where I lived, why I was there, my medical history of how my body came to be in such a sorry state. Then a little family history: illnesses and causes of death in the family, etc. All to be expected.

What was not expected was a detailed physical and mental assessment. First the physical: sit, stand without help, checking the level of movement of arms and legs, timing me to get out of the chair, go to the wall and touch it, then return and sit in the chair. Of course, I moved faster than I have for weeks to make a good show of it, but all the doctor said was: 8 seconds, that’s ok. I thought it was pretty slick. But there was more to come.

First, he gave me a pencil and a printed sheet: join the dots in the right order, redraw that cube and others. OK. Now I’m going to say 5 words. You repeat them after me. I’ll say them again and you repeat them again.  Then a little later, I’ll ask you to repeat the words. They were face, velvet, church, daisy, red.

1-IQ testHe then asked me to count backwards from 100 by 7s. Now, this is not something I do on a regular basis, but off I went subtracting and concentrating until I got to 65, when (thankfully) he stopped me.  It was a slow and stumbling performance. (I later asked my 40-year old son to do it, and he raced through the numbers without thinking – his kids do these backward counts all the time, instead of the old times tables we learned at school, and he picked it up from testing them. Not me.

Still recovering from putting in such a poor performance, he asked me to list as many words beginning with f that were not proper nouns (beginning with a capital F). I began like a racehorse, listing the fa’s (fat far fantasy, etc – even fart), then fe’s (feeble fear fellow, etc), the fi’s (fin finance fickle, etc,) then fo’s (fox fondle forest, etc). then fu’s (future fun full, etc. I left a couple of the more disreputable f-words out. I realised later that I left a lot of fr words, like frank frenzied friar, and even good old from.

But of course, that’s all very well when you are in the car leaving the car park. (The French have an expression for it: esprit d’escalier – spirit of stairs, or wit of the staircase: witty responses thought of only too late, on the way home.  Just like me.

Sitting in the back of my mind all through these tests was: do I remember the five words?  When will he ask, because I need a moment to think. Of course, the tests went relentlessly on for another 10 minutes. Then he asked: what are the five words?

1-memorygameMy mind immediately provided the first two: face and velvet, then nothing. He looked at me, I looked at him, then I looked at Julie (who smiled and looked away – thanks Julie!). Then he said I’ll give you two hints and if you still can’t remember, I’ll give you a multiple choice. I got two more with hints and the last with multiple choice. What I also got was a strong dose of humility.

But there was more to come.

In his very next sentence, he said he not only specialised in rehab/reconditioning, but also in Alzheimer’s disease. My immediate reaction was: SO? It was unspoken and followed (also silently) by When does this session end?? Let me out! I came for rehab, not embarrassment.

Fortunately, it ended shortly after. We were taken to the physiotherapy area and I was booked in the start next week.

I must admit I was a little peeved when we left (i’m a sensitive kind of guy), but Julie thought it was hilarious. After a while (and after testing a few friends) I have mellowed. Either we are all lining up for dementia or those results, under those conditions, for people who need “reconditioning”, are pretty normal.

Anyway, that’s what I reckon.

Ask me again in 10 weeks.

Travel Dialysis Review site is up and running! (at last)

Front Screen

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.

Sample reviewsAnd 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.

1-Website Swinburne design Team

The magnificent Swinburne Development Team: (L to R) Supervisors Janet, Graham and Olga, students extraordinaire Matt, Mitch, Angelo and me soaking up the joy.

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.

Launch

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

1-Browse UnitsIf 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.

 

1-Add a unitIf 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.

 

1-Add Review-001Once 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.

That’s it.

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.

More soon.

Home at last?

I’ve been missing in action for most of January. Following the blood thinner hassles around Boxing Day, I caught some bug that attacked my left hip on 7 Jan. So before I could blink, I was back in hospital.

The usual ED blood tests indicated my old friend staph epidermidis, also present last October in my right hip. The usual treatment is 6 weeks of Vancomycin, which began immediately.

Over the next two weeks, I was discharged twice, followed by two re-admissions due to more infection and for low HB.

(One excellent thing that happened during one of those snap home visits was that Julie disappeared and returned with one of those electric easy chairs. With the help of relatives and friends, she unboxed it, plugged it in and I’ve been nestled it almost every waking moment since. Now I’ve just go to work out how to stop the grandkids fiddling with the control – especially while I’m in it.)

Back in hospital, ultrasounds, scans, and eventually an MRI found several pockets of some kind of fluid in my hip (maybe pus?). However, no-one could decide whether to drain or cut open my hip to get rid of it. Eventually, I had a needle inserted to draw out the fluid (aspiration). Not much fluid. Next, I had a drain tube inserted to try a slow drip release. Again no joy, and it fell out after the second day.

Around now, at last, a senior Infectious Diseases Consultant decided to look hard at my history. She found that this was the same bug going back to 2012. It seems that while Vancomycin kills it in test tubes, it doesn’t in my body. So she changed to a new antibiotic (Linezolid) which should polish it off after 6 weeks. Once that’s done, I’m to take another antibiotic for the rest of my life as a prophylactic, designed to stop any further infection before it begins.

Once all this was decided, four weeks after I arrived, I was released home on Feb 3.

I can’t say I’m better yet. Still limping and collapsing after the smallest effort. But there is progress. Yesterday Julie and I went out for coffee (bliss). Who knows what madness could follow over the next few weeks?

Which is important, because the infection is just a sideshow. The main game is my heart and the 90% blockage in my right coronary artery. And for the last few weeks, my AF.

So far, I’ve had three plans for going forward: all involved two specialists grinding down the blockage and putting in a stent.  Each time this has been cancelled due to my infection: I must first be infection-free. This could take another 3-4 weeks. All the time taking blood thinners to get me ready for the stent.

However, just today, my Cardiologist called to say the plan has changed. I must still become infection free, but now I need to have my AF reverted first, and then perhaps my blockage can be dealt with “medically”.

First, fixing the AF, probably by zapping. Just before the zap, I’ll have a TransOesophaegal Echo (TOE) – an ultrasound taken of the heart from the oesophagus, via the back of the throat. They are worried about the possibility of a stroke if the zapping releases clots into my bloodstream. So, if there are no clots around, my AF will be zapped. If there are clots, they will block them off from the bloodstream first. In preparation, I’m to stop the blood thinner a week before, then 3 days before onto Warfarin.

So what about the stent? Medically, long-term Warfarin may be enough to keep my blood thin enough to get past the blockage in the medium term. So maybe it can be put off for longer, unless I get angina, or fail a stress test, etc.

Next stop the TOE and hopefully the AF reversion.

My Boxing Day Test

The good news is that, as expected, I was discharged from the cardiac ward on Christmas Eve afternoon, just in time to watch Carols by Candlelight and wrap presents (Christmas tradition). And I was mightily relieved.

The following day dawned bright and sunny, and fairly quiet (at least in our household), so Julie and I had a leisurely Christmas breakfast, exchanged gifts and enjoyed a wonderfully relaxed Christmas morning.

IMG_6410

Diabolical jigsaw

We spent the afternoon with the rest of the family, ate too much, played complex board games with kids young and old, dozed on chairs and generally had a great day. We arrived home pooped, spent some time on our latest jigsaw (the Mona Lisa, a Christmas gift -– diabolical – too many black bits) and hit the hay. It was a great Christmas Day.

Home ambulance 2

Off to the Austin on Boxing Day

Which was good, because on Boxing Day I got up and went to the toilet and lo and behold, blood. Lots of it.  Groan. After a very short discussion, Julie called an ambulance. Within 30 minutes I was on the way back to the dear old Austin ED.

When I left the Austin on Christmas Eve, I was put on two new meds to thin my blood (Aspirin and a new drug called Ticagrelor [Tie-Kag-gr-law]), in preparation for the stent procedure. They also changed my anti-AF (Atrial Fibrillation) meds from Flecainide to Amiodarone, which is also more amenable to stent procedures.

The blood thinners were a good move from a cardiac viewpoint, not so good for someone with a history of diverticulitis (where small sacs in the bowel become infected and burst, sometimes causing bleeding), like me about a year ago.

About two months ago I had a small diverticulitis episode, without bleeding, and forgot about it. But my body clearly remembered. What seems to have happened is the blood thinners did their job well, also dissolving a clot that was holding back a bleed, and away it went.

They stopped the Ticagrelor immediately. Over the next two days, I had two more bleeds, the effect of which were tracked by ever falling haemoglobin levels. To compensate, I had a couple of units of blood during dialysis.

Austin CDU 4

The Christmas entrance to dialysis

Austin CDU 1

Christmas Dialysis elves

(It doesn’t matter how sick you are, there is always dialysis. Sometimes it is a comfort (especially if it is giving me blood) sometimes it is the last thing you feel like. Either way, when it’s BigD time, it’s BigD time, so grin and bear it.  As usual, no matter how I feel, the staff at the CDU are uniformly wonderful.)

On the third day, it seemed to have stopped. Things were less bloody. Then diarrhoea all night. It’s like my bum was cleaning house, like a lawnmower engine that hasn’t been used for a while sputters and spurts when you first try to start it.  Once it starts, all is well. So was I.

Then some interesting news. The cardiac doctors wanted me to re-start Ticagrelor within a week of discharge, so my blood is thin and ready for the procedure. What’s more, I should stay on it for 12 months after the stent procedure.

The blood drained from my face (I don’t know where it went but it stayed inside me). Julie and I are very nervous about this.

I made a rush appointment with my cardiac specialist to talk it through. I went to see him yesterday.

Unfortunately, the night before the appointment, my heart went into AF. The switch from Flecainide had left me a little short of protection and AF arrived like a runaway blender. Combining AF with a 90% blocked coronary artery can be challenging. I felt so weak I could hardly walk to the lounge from the kitchen without my heart beating hugely and me feeling highly collapsible. I wasn’t sure whether it was the AF going faster or the blockage causing a mini heart attack. I’m still not, but I’m still here, so it was probably the AF.

Fortunately, I had this ideal cardiac appointment booked, and AF was the first topic we discussed. He doubled the Amiodarone dose so my stores will be at full protection all the time between meds. (I took two tablets last night and it’s not over, but I’m a lot better today.)

Then he gave me a stay of execution on the blood thinner for 12 days. A scare delayed 12 days is 12 days enjoyed. Maybe any bleeding that was holding off will heal properly between now and the procedure day (19 January – two weeks today) so the bleeding won’t restart.

Maybe not.

Anyway, that’s the state of play. I’m mostly looking forward to the procedure, so I can get fit again, put on some muscle, go walking and generally reclaim my freedom. But I’m mostly dreading the blood thinners. What if I bleed again? Will they still do the procedure? If so, will I need the thinners for 12 months?

I’ll have all the answers soon enough. So tune in two weeks from now for the next exciting instalment.