Road trip to Adelaide!

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

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

Not to mention the delicious anticipation of it all.

Like planning holiday dialysis a couple of months before the trip. We found two private dialysis units (both Fresenius) in Adelaide: the Payneham Dialysis Centre at Payneham, just under 5km north of the city (where Julie works) and the Hartley Dialysis Centre, at Brighton about 16km south of the city.

It was a toss-up: Payneham near the city and Julie; Hartley a 4-minute walk from Brighton beach. We chose Payneham.

Once we chose the unit, Chris, the Super Manager of my dialysis unit, arranged everything with Mary Frost, the Payneham Unit Manager: we’d be there a week, so five sessions starting Saturday morning (we would travel there on the Friday) and ending the following Thursday (the day we’d head home). This allowed for Sunday off, plus all but about 4 hours of dialysis time on the other four days.

Nobody buttonholes at Payneham, so I packed 5 days worth of buttonhole needles and scrapers (plus spares) and five ampules of Heparin.

The week before we left I arranged a service for the car (a big one, that together with new tyres cost more than the holiday!). We copied a selection of podcasts, some reliably good and others obscure but promising, onto our USB drives. I dialysed on Thursday (the day before we left). We packed the car that evening (including one episode of Crown onto my iPad, just in case we needed a fix, and more books and magazines than we could read in a month).

Then, at 6am Friday morning, complete with toast and honey wrapped in foil and hot tea in travel cups, our 8 hour, 740km (460MI) road trip began.

We were in for a hot one – it was already 28°C.

Toll way to the city, Westgate Bridge across the Yarra, M80 Ring Road to the A8 Western Highway; a smooth, clear run to the goldfields, past Ballarat, then Beaufort. About 20km from Ararat we pass the Challicum Hills Wind Farm, where we see about 10 of the 64 turbines rotating majestically in what is a fairly stiff breeze. On to Ararat.

Now 35°C (95°F). Just over 200km (124MI) done. Time to swap drivers.

Ararat has a nice story. Following the huge gold rushes of the early 1850s, Chinese miners arrived in number in 1854. Their presence on the goldfields resulted in riots, killings and segregation and eventually an entry tax of 1 Pound (about A$130 today) for each Chinese person to land at Melbourne ports. So the penniless Chinese started landing in Adelaide (for free) and WALKED the 630km to the goldfields (taking about a week). In 1857, what is now Ararat was a small shanty town on the Adelaide – Melbourne road, until passing Chinese miners struck gold there. Ararat boomed and the Chinese became a substantial part of the new town’s community. Karma.

On to Stawell on the edge of the beautiful Grampian National Park. Then Horsham, and into the flat plains of north-west Victoria to Nhill, the official half-way point to Adelaide. About 350km (217MI) to go.

There’s not a real lot to see at Nhill, and in my glorious ignorance I always suspected the name was a fancy way of spelling Nil -nothing, nada, zip. But no. Nhill is believed to be an aboriginal word meaning “early morning mist rising over water” or the like.  So there.

Temperature outside now 39°C (102°F) (the engine is cool and running well and I’m glad I had it serviced!).

We keep rolling, aiming to be across the border before coffee time.  Bordertown looked like a good candidate, but nothing appealed, so on to Keith. Just inside the town and lo, that most enticing of signs: BAKERY. A small faded yellow weatherboard building with a faded red tin roof.

We’d been on the road nearly 6 hrs and travelled about 500km (311MI). Temperature now touching 42°C (107.6°F). We stopped and stepped inside.

IT was cool and dark, and interesting. People sitting at tables in a room the size of a small cafe. Walls covered with old newspaper articles, posters and the like.  Patchy laminate on the floor. To the right, unexpectedly, a room full of old (“Vintage”) iron and crockery on tables and the floor, some of it with recognisable functions, and with what seem to me to be hopeful prices.

Straight ahead behind the tables we emerged into the food shop, with the usual glass counter, bain-marie and a fair selection of baked goods. An expresso machine over to one side, with a young female barista pumping out the good stuff. To the right of the counter, another large room with an ice cream freezer, rows of packaged foods and newspapers. And other stuff.

Sitting discreetly to one side, a table was propped against the wall.  Taped above, a hand-written sign: Free Tea and Coffee. Below the sign, on the table sat a full, steaming hot water urn, teabags, instant coffee, sugar and a stack of takeaway paper cups. The shop was fairly crowded, but no takers: we all wanted expresso. Or maybe some of us didn’t see the sign until it was too late.

Stayin’ cool on the couch

I ordered and stood back. Yet another room appeared behind me, off to the left: sort of a glamourous sitting room, with soft, lumpy carpet, couches, multi-coloured LEDs and pictures of old movie stars.  The couch looked comfy, so we sat. And wondered. Coffee forgotten. Until the barista called…

Leaving the lounge, a woman with a cashbox appeared, sitting at a table. Collecting money? An entrance fee? A raffle? We studiously unsaw each other and moved on.

We collected our drinks and headed for the car. Julie sipped hers and said: “You forgot one word when you ordered: hot.” I sipped mine: lukewarm.

“Did you expect a normal latte? From here?

Let’s try for hot coffees here again next Thursday, unless it’s gone back to Gallifrey* by then.”

We got into the car and headed west for Adelaide.

To Tailem Bend, nestled beside the mighty Murray, over the Murray bridge at Murray Bridge, into the lush green Adelaide hills and finally, into the suburbs. Mr Google Maps led us to Anzac Highway and on to Adelaide’s favourite beachside palindrome, Glenelg, and to the Ensenanda Motel, our home for the next 6 days.

780km (485MI), 8.5 hours, still 42°. Tired, but ready for the next phase of our Adelaide holiday we opened the door to Room 18.

* Dr Who’s home planet

 

Living well on dialysis? Absolutely!

BigDandMe is all about living well on dialysis.

Hard to imagine when we first hear the bad news: I’m going on dialysis. Then, our life seems to be consumed by shock, anger and not a little fear. But for most of us, that doesn’t last, because after a few weeks, we start to feel well again, and our resilient side comes to the fore. Our life is not over, just different. And dialysis is the price of the ride.

It is always great to hear of other BigD-ers with this living life to the full attitude.

 

wayne-cooper-dela

Wayne Cooper LSBM at DELA

Like Wayne Cooper, a board member of that wonderful South Australian institution, the Dialysis Escape Line Australia*. DELA’s main goal in life is to set up temporary dialysis units at resorts and on cruise ships to allow patients a holiday, without the stress and difficulties commonly experienced when organising treatment away from home.

 

Wayne’s bio appeared in last month’s newsletter and is well worth a look.

Meet Wayne Cooper, LSBM (that’s Longest Serving Board Member).

Wayne’s dialysis story begins at 28. Only married for three years, he was typical of young people, ignorant of renal failure and in particular dialysis. He had his first treatment at Flinders Medical Centre, but was then taught self-care at a satellite unit at North Adelaide, where he met Nancy Douglas-Irving for the first time.

After three years of three times a week dialysis, he finally received the call! A compatible kidney had become available and gave him six years of near-normal life.

With rejection of the transplant in 1998 and a return to dialysis, he had to give up his employment as a foreman at a tyre company. He then turned his life around, retraining, and finding employment on the switchboard at The Queen Elizabeth Hospital, and thus was able to accommodate his need for dialysis. Three years later he had another successful transplant.

However, after four months he and his wife Helga were called to an emergency meeting of renal and vascular specialists at Flinders, including department heads. It was believed the kidney may have melanoma deposits in it. He had to go through the enormous physical and emotional stress not only of losing the transplant, but it was also considered necessary for his body to reject it completely before it could be removed.

At least it was not all unnecessary. Melanoma was present, and Wayne was advised he could not have a further transplant for at least two years, and one did not become available until a year and a half after that, giving him another eight years before he went back on dialysis, three years ago.

Wayne admits he started out an angry young man, reluctant to accept the invasive tests, the constant commitment to dialysis, the unfairness of it all.  His life has revolved around renal disease and dialysis for 26 years.

He has worked for all but a year of that time and feels this is definitely part of the healing process, as he is busy with various projects and not focussed on his next dialysis session.

He is also President of the Glenelg Bowling Club and plays pennants every Saturday. He has just organised a fantastic and successful fundraising night for DELA with the bowling club members. This Club association enables him to mix regularly with his friends and experience as closely as possible a normal lifestyle.

And now for Wayne’s words…

One of the life changing moments for me was joining Nancy and Enzo at DELA.

“I have seen firsthand that what we do as a charity is one of the best examples of people helping people.

“With DELA, I have been able to see people of all ages through their eyes and their disease. They have taught me to enjoy what I have, to laugh when you are able and just get on with life.

“DELA looks after the partners as well, they deserve a break too, they are the heroes who pick up the pieces when you fall apart.

 “The backbone of my life is my wife Helga, she has never let me short change myself, she keeps me going when I am struggling.

“She really deserves a medal for perseverance.”

I spoke to Wayne just today and he told me he will soon be lining up for another transplant, from a living donor – his sister.

Life with kidney failure may not be easy, but it can be one hell of a ride.

 

*From the DELA website:

DELA’s aim is to provide opportunities for people on dialysis around Australia.  We are an Adelaide-based charity, staffed entirely by volunteers.

We set up temporary dialysis units, and have a volunteer medical team.

These dialysis units are set up in Port Douglas in a hotel, and once or twice a year on a cruise ship to New Zealand or the South Pacific. We are hoping soon to extend our destinations to include the Gold Coast. These temporary unit setups cost the charity approximately $25,000 each time.

Yet another !*?*?*! adventure?

This time the adventure began when I went to the toilet. When I looked at the result I saw a black mass surrounded by red wine that I don’t remember drinking. My heart fell: not good.  I thought, will I tell Julie and have to go back to that damned ED? Or will I just stay quiet and hope it is a one-off?

I flushed and began to walk away when I needed to go again.

Same result, with more red wine. Actually, all red wine.  Er Julie, have a look at this. She looked at me with just a touch of anxiety, looked into the bowl and said: Pack your hospital stuff, we’re going to Emergency, no arguments.

Blood transfusion Number 1

Blood transfusion Number 1

I hate it when I’m, right.

The interesting thing was that unlike the two previous adventures, we had a dream run. It was 8am – Rush Hour, but against the traffic. And when we arrived, ED was empty! An amazing and unexpected sight. Presumably, most people have no time for emergencies when they are rushing to work.

Whatever.  I told my story and was ushered into a cubicle within minutes. I needed to go to the loo again.  This time samples were taken, along with bloods and body measurements. Within half an hour, I was admitted to a ward: my first non-kidney-drama admission!

It was quickly explained that losing lots of blood was life threatening and that as my haemoglobin (Hb) falls, so will I. It was currently 6, so they needed to replace the blood I had already lost. And they needed to find out where the blood was coming from to stop the flow.

In fairly quick order I had a CT scan (that found nothing), a digital examination (not the 010101 kind) and a brand-new cannula in my arm had (as usual, after multiple tries). Quick smart I was connected to the first transfusion (one of many).  I soon had a little more energy and Julie and I started to feel a little calmer.

By this time, it was midnight. Julie went home and I settled down for a night’s sleep. However, a few hours later, another big bleed and I lost most of the transfusion and then some. In the toilet, I felt dizzy and began to lose my footing. I called the night nurse and said I needed help and maybe some more blood?  She took me back to bed and said first she needed to measure my blood pressure and Hb. She measured the BP and disappeared.

After a few minutes, I could feel more blood coming. I was getting dizzy and faint just lying there. No sign of the night nurse.

Once or twice before (during the bad times of failing transplants) I’ve looked into this chasm and thought: Ok Superman, this is serious, time to do something or you’re a goner.  So I’d call Julie, and slowly but surely, I’d crawl away from the edge. So, here I was at the chasm again. What to do? Just like those last times, I called Julie. I told her I was fading fast and could see no help around. Of course, she came (at 4am) and my world changed for the better.

Doctors appeared, Hb was measured and we were much relieved when three bags of blood were ordered ASAP, with one to start immediately.

Not for the first time, I thanked my lucky stars for Julie and marveled how much it pays to have the right person in your corner.

I thought, why hold back? Give me all three bags! Starting now! But half way through the first bag, Kristine, the very smart Renal Resident, rushed in and asked me what number bag I was transfusing. She relaxed when I said number 1. Why? Because there are extra precautions needed when transfusing people with kidney failure (of course).

As a long-term dialysis patient, I have always known that there is an additional level of complexity whenever we BigD-ers go to hospital: it’s the main reason I hate to go there. Nothing is straightforward. You have to assess even the simplest treatments through the lens of our kidney failure: diet or fluid restrictions limit treatment Prep options; failed kidneys mean we can’t process or eliminate dyes and contrasts during various scans; outside a renal ward, the nurses really don’t know much about our care or medications, and there is the omnipresent need for dialysis no matter how sick we feel.

For transfusions, the trouble is that as the blood in the blood bag ages, it generates potassium, which we can’t handle and could cause serious heart problems. One bag is Ok, but any more must be given via dialysis, where the bag blood flows through the dialyzer to remove the excess potassium before it goes into us.

For BigD-ers, the price of a healthy stay in hospital is eternal vigilance.

Over the next week, the bleeding and transfusions continued, sometimes together: at one point I was on dialysis receiving a couple of bags of blood, and at the same time propped on a pan, passing a cupfuls of blood. I am deeply grateful to the caring and professional dialysis nurses in the Austin’s Central Dialysis Unit, who made me feel like this was the most natural thing in the world and not the least yucky or disgusting. Bless you all.

The leak became intermittent, but the hunt for its source went on. First a gastroscopy, looking down my throat into my stomach and part of the small bowel: nothing.  Then a second CT scan (more contrast), which found a leak in my small bowel. So I lined up for an angiogram, a probe into the small bowel via my groin, guided to the leak using X-ray contrast dye, where it can be used to stop the bleeding.  However, the bleeding had already stopped, so nothing was done.  Then I needed dialysis to remove the contrast.

The next day the bleeding started again, so I had another angiogram to catch and plug the leak: but it stopped again, long enough to make that one a waste of time too. More dialysis to get rid of the contrast.

Still more tests: an extended colonoscopy (just like it sounds, goes a little further up): inconclusive – they found some old blood near some diverticulitis but not sure if that was the culprit.

As veterans of this kind of thing will attest, the difficult thing about all these tests is not so much the pain or intrusion, it’s the Prep. For much of my time there, I was either fasting or on clear liquids only, day after day, with maybe one good meal or a few bags of blood now and then. So I quickly lost weight (about 4kg – 9lb) and condition and became weaker and weaker.

Gradually, the bleeding slowed to a trickle, but I still needed replacement blood. All in all, I had 17 bags of blood over ten days. (One of the side effects of all this blood was that my face, hands and feet swelled up, just like I was on large doses of prednisolone. It seems that your body takes a while to absorb the fluid the accompanies the blood (about five days for me), even though it comes via dialysis, and stores it in flesh under the skin.  All a bit spooky and unpleasant.)

Finally, mercifully, the bleeding stopped of its own accord (they say it often does). Since all seemed Ok, I was discharged home, but not before one final search via a Pill Cam, which I completed as an outpatient. That was a couple of days ago and I haven’t heard the result yet.

Thus ends my latest adventure, as exciting and scary as any kidney drama of the recent past. This time it came with a couple of additional educational messages:

  • Stay vigilant: non-kidney hospital admissions can be even more complex and dangerous that the kidney ones for BigDers, and
  • Keep fit: several staff said to me that I made it through this adventure relatively intact mainly because I was reasonably fit and healthy to begin with – a tribute to my almost regular twice a week gym trips and our long(ish) Sunday walks.

The sting in the tail is that the reason for this adventure was never found, and it stopped by itself. Of course, that means it could start again anytime: next week or in 20 years. But next time, at least we’ll know where to look.

So Julie and I now relate closely to Bilbo Baggins after his adventures with Smaug.  There may be other adventures coming, but not yet please. We here in the peace and tranquillity of our own home, and loving it.

ps: My heartfelt thanks to the wonderful blood donors of Victoria for their life-giving gift.  You are no longer strangers, you are a part of me.

pps: Thanks and much love to our family and friends, who in thought and deed, kept us going.

Another September medical adventure on dialysis

With my heartbeat restored to normal rhythm by those wonderful people at the Austin Emergency Department, life was sweet again.

Then on the evening of my third day back on BigD, about an hour into the run: crippling stomach pains. What the hell is this? Over the last few weeks, I’d had a niggling stomach ache, which I had attributed to a series of hotter than usual curries from my lunch shop. As you do.

red-curry-riceI’ve been losing weight lately, so I’ve taken to having a hot meal at lunchtime to try and beef up a little. I go to the same place most days, called ThreeAteThreee (‘cos it’s at 383 Camberwell Road, of course). It’s owned by a Chinese couple called Rick and Too-Shy-to-Say. Rick is a great cook. He makes a main meal every day: one day chicken, the next day beef. Usually, it is a curry from somewhere in Asia (soo many curries!). Occasionally he lets his head go and makes European dishes. It’s always a surprise, and good value: Around $10 for the meal, plus coffee. Each lunchtime I walk there, have my meal, read my book, drink my flat white and walk back to work.

Sweet. I may even be gaining weight.

But as I say, recently I’ve had stomach niggles. Being an expert at self-diagnosis, I blamed Rick’s curries. I made a mental note to test my theory with something bland, like meatloaf focaccia for lunch. Then when the time came, the aroma of the main meal in the bain-marie would start my mouth watering and I’d put off bland until tomorrow.

So I felt I had only myself to blame when the serious cramps arrived later that day on BigD.

They were so bad that, unbelievably, I decided I needed to go back to the ED for another opinion. I rang Julie and told her my news. Being the wonderful, unflappable person she is, she dropped everything, picked me up and back to the ED we went.

It was another busy night at ED. People were lined up to get to the line-up. No empty chairs, just a roomful of sore and sorry people with varying degrees of pain and pestilence. As usual, Hearts go first. Pains in the stomach can wait. Fair enough. I’ve been in the fast queue before and don’t want to be in it again. So we waited.

So I sat there with Julie and my wild imaginings. As the waves of pain washed through my stomach, I saw a masked doctor with a scalpel slicing through my bloated belly, a squirt of blood, a burst of foetid air, and me smiling in relief. Thanks Doc, strong pain needs a strong remedy…

About four hours later, the door opened and someone called my name. We were led to a cubicle and I laid on a trolley bed. The team went into action. Questions, measurements, a little poking and prodding. The general consensus was: most likely diverticulitis (sadly a very common condition for people over 50, where abnormal pouches form in the bowel wall and become inflamed or infected). To be certain, they ordered a Cat scan (a fast, painless and very accurate x-ray scan).

By now it was 3am and I convinced Julie that a Cat scan would take hours and she should go home. Of course, no sooner had she left than I was wheeled to the scanner. Five minutes later I was wheeled back to my cubicle.

Then the ED doctor arrived and confirmed that it was early stage diverticulitis with no complications. So what’s the cure?  Should I be fasting? Will I need a full body shave? No, no, it’s not severe and should clear up in a few days with antibiotics.

Wow. Such relief. I still had the pain and misery, but knowing my enemy quashed my fear and wild imaginings. All would be well.

I called Julie, waking her five minutes after she got to sleep and she came to collect me. Again. And I mean again. Over the years, there have been collections beyond count. (Warm Glow.)

Half an hour later, pleased and relieved, we heading home. I was still unwell with stomach pains and was very tired for a couple of days until the antibiotics kicked in. But the pains gradually faded and my energy levels rose.

It took two weeks to clear, but now, I write this blog a hale and healthy BigD-er looking forward to my next curry lunch.

A call from home

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

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

Lisbon adventure #1

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

Off to the Diaverum Global Dialysis Conference

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

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

(more…)

Christmas snippet

1-uncleHi all you BigD-ers and supporters.  Have a great Christmas!  I hope the day brings you joy and something nice to eat.  This post is just for Christmas.

This post is just for Christmas.

A Christmas Story

As part of my Christmas, earlier this week I had an interesting experience.  I went for my usual Christmas haircut at my usual barber.  The guy settling into the chair before me was an elderly gentleman who has owned one of the local coffee shops (more…)

Kidney disease: meant-to-be or dumb luck? Part 1 – Chance

gladstone ganderI have often wondered if my kidneys were programmed to fail when I was born, or if they were simply the victim of a rough and tumble world; or maybe a bit of both.

I know, everybody is different, but maybe my case could be useful for others.

I had some kind of blockage that stopped urine from leaving my left kidney, which eventually destroyed it.  It happened when I was 19, full of beans, and in the Navy.  (more…)

Living life to the full on dialysis – Travel!

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

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