The first time

scared-womanWe all remember our first dialysis session. I certainly do. At the Central Dialysis Unit, just down the stairs from Ward 4, the kidney ward. It was a super emotional time. Julie walked with me into the unit, my heart thumping, my mind racing, looking everywhere, taking in everything. I kept my face blank, hiding both fear of the unknown and anger that it was really about to happen. Everything was new and unfamiliar. Nurses moving briskly about. Patients on dialysis machines in all directions. And there, across the room, an empty chair next to a humming and flashing machine, just waiting for me.

Luckily, the Unit Manager was an experienced and sensitive soul. She knew it was my first session and made sure I knew she knew. “I know you’re not too happy about being here, but we’ll do our best to make today a gentle start to your time on dialysis. *Heather will be putting you on today. She is one of our best cannulators, and you’ll just have a short run today – a couple of hours.”

My mind went blank: what’s a cannulator? And relief washed over me at the same time: I wouldn’t have to sit there for four hours – this time.

Heather arrived. Hi (nice smile, didn’t look too fierce or incompetent). “Please wash your arm at the basin, then have a seat.” I washed, sat in the chair and waited.

Heather began examining my fistula “good size, nice and soft, with a good pulse and thrill” (I knew about the thrill – in bed, when my forearm was on the pillow next to my head, the roaring, pulsing sound had woken me up more than once). More pressing and examining, all the while explaining what she was doing.  Would you like local? It stings a little, but it helps with any cannulation pain.”

Ah, cannulation is needles! Yes please.

All ready to goEverything lined up on the table: two very large needles with tubing attached, a very small hypodermic needle with local anaesthetic, tourniquet, strips of tape. Ready. She fits the tourniquet, wipes my arm with disinfectant. OOWH! The unexpected sting of the local.

 

Taped in placeHeather picks up the first needle. In it goes, smooth as you like, into my virgin fistula. No pain to speak of, but a little uncomfortable.  She tapes and flushes. We both smile. A minute later she has the other needle in. Intrigued, with two needles sitting quietly in my new fistula, and relieved that all went well, I relax for the first time: it’s awful, but not so bad as I imagined.

Heather connects me to the machine (with a fairly gentle blood flow of around 200ml/min) and I watch my blood snake out of me, through the filter and a few little holding tubes then back into me. I look around: I’m just one of the crowd now.

I look around: I’m just one of the crowd now.

I don’t know if I was lucky because I went to a unit with great management and experienced staff, or if the unit had systems in place to ensure great service, but that was my experience, 21 years ago.

And it should be every new dialysis patient’s first time experience.

Not the worst time

Unfortunately, based on a new patient in our unit’s first encounter in a Melbourne hospital, it is not. No need to go into detail beyond that whoever put her first needles in made a botch of it., *Kate’s first two runs resulted in blows that rendered her soft, young fistula virtually unusable. She was traumatised and terrified of trying again. Her husband took weeks off work to support her and their young children.

Luckily, Kate is now in our unit and on the mend, though at present her fistula is still only able to handle single needle dialysis.

How this could have happened is beyond me. First-time (and any-time) dialysis patients struggle enough without poor training and slipshod procedures further endangering their lives. Quality procedures and systems should be part of the DNA – fundamental building blocks – of each dialysis organisation, and each clinic.

For example, my unit has several detailed cannulation procedures, including one for mature fistulas and one for new fistulas. All are reviewed and renewed regularly to keep them effective.

Another way to keep them current is to track and respond to incidents like Kate’s, so changes can be made to minimise the chances of it happening again.

For example, a couple of years ago after a transplant, I was given the wrong dose of a very expensive and powerful antirejection drug (all at once rather than in 10 doses over 10 days). I became quite unwell and Julie rightly complained, loudly. As a result, several people apologised (including the hospital in writing), but more importantly, procedures were changed and additional training given to staff.

I will certainly urge Kate to provide feedback on her incidents, for her peace of mind, and so that other first times at that hospital are like my dream run, and not like her nightmare. The unit should have a written incident report for each blowout. Once she is up to it, she should follow up and find out what, why and what they are doing about it.

Suffering in silence helps no-one

The patient and carer trained, what about the doctor?

Here we are, just a couple of weeks after posting the Fistula Health training program, and Daquon writes this:

Hi Greg. My mom is 42 she been on dialysis for 5 years. Recently her fistula had been getting big and the Dr. at dialysis told her she should be careful because it was thin and she could bleed to death. From me reading your responses on everyone else, they are supposed to fix her fistula when they noticed it was swelling up.

But lo and behold they didn’t, and a week later she woke up and blood was squirting out her arm. I call ambulance, they took her to the hospital. She got surgery done on her arm but she came home yesterday and she told me she had to change the bandage twice a day and when I help her take the bandage off it was a big hole in her arm leaking blood to the white meat. We had to stuff the hole with bandages and wrap it back up.

When I send this, tears come to my eyes. I just want some information on what’s going on and is she going to be alright. the only thing she told me is that it was infected.

Wow. Daquon’s mother was a classic candidate for a fistula rupture: swollen, thin walled and infected, and what happens? The doctor both recognises and acknowledges the life-threatening problem, then he tells her to be careful and walks away.

This the very person, the saviour, the white knight expected to act, to fix the problem!

Of course the fistula ruptures. Luckily Daquon is there to help. He acted quickly to stop the bleeding and called an ambulance. The patient/carer training worked just fine.

When we go to dialysis,  we assume that each party in the circle of dialysis care will actually do their job. I think that mostly this is a fair assumption. Mostly.

But the best way to be sure of that is to make a very public fuss – even a legal fuss – when they don’t. Sometimes the only motivation to improve care is financial. So I have sent Daquon the details of a lawyer who is working on a US fistula rupture negligence case right now.

At the very least he should see the dialysis unit manager and make a formal complaint about the doctor’s lack of action. He should also ask to see his mother’s care record to see what has been documented and what care has been recommended. In many cases, this material is hard to get because the dialysis unit owners don’t want to admit liability. -“It was nobody’s fault- it happens” just doesn’t cut it. The blame for this kind of inaction can and should be laid at the door of the dialysis unit and poor training of staff.

In many cases, this material is hard to get because the dialysis unit owners don’t want to admit liability. -“It was nobody’s fault- it happens” just doesn’t cut it. The blame for this kind of inaction can and should be laid at the door of the dialysis unit and poor training of staff.

It is hard to say what was done at Emergency, but his mother clearly needs to see a vascular surgeon to have her fistula fixed properly. So Daquon should also ask for an immediate referral. Hopefully the surgeon will do more than just tell her to be careful.

Fistula Rupture Health Education Package Now Available

This week the Fistula Health Education for Patients package, developed by Julie Tondello at Diaverum and me is now available for anyone on dialysis.

The Package has been prepared for use on a one-on-one basis by dialysis unit nursing staff, educating patients.

Dialysis Unit staff

  1. Print out the two-page education sheet and keep it handy for reference during each education session
  2. Print two color copies of the poster:
    1. One on an A3 or similar sized page
    2. One on an A4 or letter sized page.
  3. Laminate both posters
  4. Attach the large poster to the unit noticeboard so that all patients can see it

Schedule brief (5-10 minute) education session with all patients. Use the Education sheet and the A4/Letter sized poster during each session.

Individual patients

This material can also be used in a self-learning mode directly by patients. Just print out the two-page education sheet and the poster. Then put aside some time to read the sheet and work through the poster.

This education has been provided for use globally via the Diaverum network and the BigDandMe blog for unrestricted download and use under a creative commons (no fee) licence.

Fistula Health Education for Patients package

Fistula Health Education Poster for Patients

 

Training really can stop people from dying from fistula bleeds

You may recall that in April last year, Julie Tondello (from Diaverum in Greensborough) and I developed a Fistula Safety training course and poster for dialysis patients. The main aim of this 10-minute course was to keep people safe from fistula ruptures and bleeds, both by knowing what to look out for to prevent it from happening and by Pressing and Lifting to stop the bleeding if it happened.

Julie ran the training as a one-on-one session for all patients at Greensborough and North Melbourne dialysis units. Surveys before and after indicated that it was universally well-received and effective.

But as always, the proof of the pudding is in the eating.

Peter

Peter, 70, has been on dialysis at Diaverum Diamond Valley for about 8 years, and over the last year, learned that he had contracted cancer. This led to a series of treatments, including chemotherapy.  Last month, he noticed a rash on both arms, which he (rightly) attributed to the chemo. His doctor recommended a cream rub, which he diligently applied to each arm, including before dialysis.

The trouble was that the cream made his skin a little slippery, and an hour into the run, the tape holding the arterial needle in place lifted off completely and his arterial blood hosed a couple of metres into the room. He immediately remembered his fistula safety training, pressed down on the needle hole with his finger and raised his arm. He stopped the bleeding, called for help. No panic, no drama.

Lilliana

Lilliana, 62, has been on dialysis for 14 years, eight of those at Diaverum North Melbourne. Over the last month or so, one particular needle hole in her fistula developed a scab that did not seem to be healing. While there was no sign of infection, nursing staff avoided it and chose other sites to puncture when needling. One morning two weeks ago, while Lilliana was at home, the scab came off and the fistula began to bleed profusely.

Again, like Peter, Lilliana remembered her training: she pressed with her finger and raised her arm above her heart to stop the bleeding, and called for help. She knew what to do, and she did it. No panic, no frantic search for a tourniquet or something to staunch the blood flow. Just quick, effective action. The ambulance arrived, she was taken to hospital where the wound was treated.

Over the next few days it showed signs of recovering.

 

1-north-melb-bleed-2

Lilliana’s fistula after the bleeding stopped

However, though the scab appeared to be healing, last week it came off again, while Lilliana was on dialysis. Blood burst out and sprayed everywhere. Once she realised what was happening, she again pressed her finger on it, raised her arm and called for help. The unit’s doctor quickly took over (see pic). Again, she went to hospital, but this time for a complete fistula rework.

 

It will take a few weeks for the fistula to recover, but it will, and in the interim, she will dialyse using a single needle.

The training works!

I must say, when we heard about how well both Peter and Lilliana responded to their fistula bleeds, everyone associated with the training were thrilled and delighted. Their prompt action diffused what could have been major, possibly life-threatening situations.

At the beginning of this project, our first surveys showed that almost no patient knew that a fistula could rupture or bleed out, and 90 per cent did not know what to do if it did happen.Post-training surveys indicated that over 90 per cent of patients now knew what to do. But seeing them put their training into action so confidently and effectively is concrete evidence that the training works.

Post-training surveys indicated that over 90 per cent of patients now know what to do. But seeing them put their training into action so confidently and effectively is concrete evidence that the training works.

We are making headway! In our own small circle, yes, but headway nonetheless. And having proven the effectiveness of the training, the next step is to release it for patients everywhere.

So watch this space. The training program will be available online over the next month or so, for any unit or anyone to download, print and use.

And, with luck, we will see what we have all been looking for for so long: as the training spreads, fewer and fewer people dying from fistula ruptures and bleed outs.

 

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.

Life 2.0 – a chance to fix the faulty bits?

dna-crane

Rebuilding DNA with CRISPR. Source: New Yorker, Illustration by Todd St.John

BIG things are happening in genetics, for BigD-ers and for the rest of the world. Scientists have discovered a naturally-occurring, highly accurate gene editor, that can be used to cut and paste or delete genes or parts of genes in DNA. They can use the editor to remove a disease-causing mutation, replace faulty or undesirable parts of a gene or to turn a gene off completely.

What could this mean? Say you’ve inherited a genetic mutation that guarantees you’ll get polycystic kidney disease by the time you reach adulthood. And that it is most likely you will spend the rest of your life on dialysis.

What if the mutant genes that cause polycystic disease, passed down from generation to generation, can be clipped out of your genome entirely and you never pass it on to any of your offspring?

That’s the promise of this new gene editor, called CRISPR, which is basically a genetic-level immunity mechanism that evolved in bacteria to fight off disease.  It was discovered about 30 years ago, but scientist have only now, over the last couple of years, discovered its full potential and are beginning to learn how to use it.

For my part, I’d be happy to line up for a couple of new kidneys, maybe improved eyesight (perhaps from some eagle genes), revitalised muscles and bones, and a couple of other refurbs not really worth mentioning. Not too much to ask.

As you can imagine, many people are beginning to see CRISPR as the most world changing (and challenging) discovery since antibiotics or atomic energy.  It has the potential to enable us to radically change humanity’s genetic code, healthcare, food systems, agriculture and manufacturing – even biological life on Earth itself.

CRISPR stands for Clustered Regularly Interspaced Short Palindromic Repeats, which is just about as lame and forgettable as “BackRub,” a search engine named for its analysis of the web’s “back links”, subsequently renamed Google. I prefer something memorable. New Scientist suggested DNA Legokit or Gene Photoshop, but I prefer something snappy and big picture, like Life 2.0.

Whatever, a CRISPR by any other name will still change the world.

But we are in early days. Currently, most CRISPR work is taking place in labs, cutting and pasting genes in crops (tomatoes, mushrooms, etc), chicken eggs, laboratory mice or organelles (tiny collections of human organ cells, often built using stem cells), to test the outcome of the gene changes.

(One of the most important current organelles to BigD members are those described as mini kidneys, that have hundreds of filtering units and blood vessels and appear to be developing just as kidneys would in an embryo. ” We can look at a little organ from the patient and a little organ from the patient that is only different because we’ve gene-edited to correct a mutation. That’s the best way we can model a disease” said lead Molecular Biologist Professor Melissa Little, of the Murdoch Children’s Research Institute. See the whole story in A kidney in a Dish.)

It will be a few years before CRISPR products move out of the lab and start to deliver on Life 2.0 in the real world.

Which is a good thing, because as a species, we need the time, not just to work out what we can do with it, but to decide what we should do with it.  Changes made to DNA are permanent for every subsequent generation (though there is the option to go back and undo the changes…). None of us is perfect; we all make mistakes.  Are we prepared to risk the consequences, intended and unintended?  Should we? Who decides? Even if every scientist using CRISPR is superbly skilled and motivated only to do good, would that make the technology safe for mankind?

Alas, the world is not run by scientists, but by politicians. aND Every generation has its small percentage of geniuses and psychopaths. Hopefully, the geniuses will move us forward. But what if a new Hitler sets up a lab that moved CRISPR to the dark side? What’s to stop him making and even releasing a pathogen against which ‘inferior races’ or their food crops have no defence?

I am not alone in fearing the dark side.  Jennifer Doudna, Professor of Chemistry and Molecular Biology at Berkeley is working at the forefront of CRISPR development. In a recent edition of the New Yorker, the reporter …asked if she had ever wondered whether the powerful new tool might do more harm than good she looked uncomfortable. “I lie in bed almost every night and ask myself that question,” she said. “When I’m ninety, will I look back and be glad about what we have accomplished with this technology? Or will I wish I’d never discovered how it works?”

Her eyes narrowed, and she lowered her voice almost to a whisper. “I have never said this in public, but it will show you where my psyche is,” she said. “I had a dream recently, and in my dream”—she mentioned the name of a leading scientific researcher—“had come to see me and said, ‘I have somebody very powerful with me who I want you to meet, and I want you to explain to him how this technology functions.’ So I said, Sure, who is it? It was Adolf Hitler. I was really horrified, but I went into a room and there was Hitler. He had a pig face and I could only see him from behind and he was taking notes and he said, ‘I want to understand the uses and implications of this amazing technology.’ I woke up in a cold sweat. And that dream has haunted me from that day. Because suppose somebody like Hitler had access to this—we can only imagine the kind of horrible uses he could put it to.”

The nearest equivalent to this problem that exists now is atomic energy and nuclear weapons. First used in August 1945, it took just under 12 years (July 1953) to establish the International Atomic Energy Agency (IAEA) to promote the peaceful use of nuclear energy, and to inhibit its use for any military purpose. With the odd miss (Fukushima), near misses, and wild cards like North Korea, India, Pakistan, and Iran, it has been successful (so far) in achieving its aims.

Perhaps, with all its shortcomings, we need the same kind of organisation for CRISPR – an International Genetic Manipulation Agency (the IGMA)?  At a minimum, we need to establish and administer safeguards against using CRISPR for the dark side. Perhaps by maintaining a central registry of CRISPR companies, labs and peer-approved projects and a repository of the tools and techniques used to manipulate Earth’s gene pool. Perhaps much more.

And we should start soon before some labs jump the gun: Chinese scientists CRISPR a human for the first time.

Easy to say, harder to do.  But for our future’s sake, I’m happy to wait to live the Life 2.0 dream, rather than rush into the Life 2.0 nightmare.

Update

Safeguard procedures and processes are starting to appear: the US Pentagon’s Defense Advanced Research Projects Agency (DARPA) plans to establish a new genetic safeguard initiative called Safe Genes, to cultivate, among other things, a kind of clean-up crew for engineered genes deemed harmful to or undesirable in an ecosystem.  DARPA researchers are developing responses for accidental or malicious “genetic spills”

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 September medical adventure on dialysis

For the last couple of years, I’ve been unusually healthy: no major dramas or hospital admissions; not many infections, colds or the like. And I was pretty healthy for our Lisbon trip.

This kind of peace and quiet can lull you into a false sense of security, where you start to think that health might just be the norm. But sadly, all of us BigD-ers need some pretty fancy footwork and a good dose of luck to stay healthy.  Or at the very least, we need to keep thinking and not make dumb decisions.

I stopped thinking and fell into my unexpected medical adventure on the 13th, around an hour into my dialysis run. I went into AF (irregular heartbeat) and my pulse got faster and faster. I was short of breath and had waves of chest pain; I thought my chest was going to explode. I persisted with dialysis for a while, hoping to get to the end of the run, but that was not to be. The staff called an ambulance, took me off the machine and I called Julie.

Julie arrived first (and I was really pleased to see her), followed by the ambulance. The paramedics were cool and calm and started work immediately. They took a range of measurements (pulse, ECG, temp, bloods, etc), asked me how I felt and I said I had chest pain like an ache in waves. The senior paramedic thought it was heart rate pain – because my heart rate was too rapid, it couldn’t effectively pump blood to the rest of my body, depriving my organs and tissues of oxygen and causing the pain, shortness of breath, etc.

They gave me a GTN (Glyceryl trinitrate) patch (to widen my blood vessels and let more blood and oxygen reach my heart) and some chewable aspirin (to slow blood clotting). Then a small injection of Morphine, to reduce the pain. I felt a lot calmer after this, but my heart was still playing helicopters in my chest.

1-af-amb-3-001Then they packed me up and we went for my first ever ambulance ride. Julie followed in the car.

We went to the closest hospital, The Austin, which is also my ‘Home” hospital, where I have had two transplants, three kidney removals, and many, many stays for infections unknown and known (like pneumonia) and the odd heart disease problem. It is quite disorienting, scooting along in the back of an ambulance. I know the way there quite well, but each time I looked out the window, I really had no idea where I was.

In the past, I have always been admitted via the Emergency Department, often after a lengthy wait. This time, I arrived at the Ambulance entrance with flashing lights; the doors opened and I was wheeled in on a trolley. There was still a wait; it was super-busy so I just laid there and watched the drama, of which there was plenty.

For some reason, this was a night for Ice overdoses and aggressive, crazy people. The ED staff are not only skilled, they are brave. In the glimpses I saw, one patient was clearly out of her mind; fighting, swinging, grabbing, punching, screaming, swearing and staring with blank, hate-filled eyes. She was gradually strapped in place in a bed but continued to thrash and struggle and stare. It was as scarily close to a real-world zombie movie as I ever wish to experience. Asking myself why anyone would do this to themselves was as horrifying as it was pointless.

Every few minutes, I texted my progress to Julie and Mark, our eldest, who were in the ED waiting room, about my progress.

Eventually, I was taken to a cubicle for more tests and heart drugs. By this time, it was about midnight. Julie and Mark were shown in. Mark left around 1:30am. In the past, I have spent the night on a trolley in ED waiting for a bed in the kidney ward. But no one mentioned being admitted this time. Julie was all for waiting around, but I thought I would be hours yet, and eventually convinced her to go home around 2am.

Around 2:30am the heart drugs started to kick in and my heart beat gradually returned to normal. Around 3am, the cardiac specialist came by and said I could go home! I called Julie, who had just fallen asleep. She drove back and picked me up. We arrived home around 3:30am and flopped straight into bed. I slept like nothing had happened

I slept like a log and woke feeling like nothing had happened. Luckily, there were no after-effects, and heart-wise all is well. Julie and I are still recovering from the drama.

Lesson. Later, discussing the whole thing with my doctor, I remembered that sometimes when I try to take off more fluid that I need to, my heart reacts to the reduced fluid volume by going into AF, usually for a few hours. This time, I had tried to take off much more than I needed to.  Stupidly, I persisted and my heart reacted accordingly. What I should have done was to stop dialysis immediately, have a drink, and recalculate my dry weight. What I did was panic and keep dialysing.

Like I said, sometimes  good health simply involved thinking straight and not making dumb decisions.