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.

International Travel Tips on BigD – an update

1-img_3565International travel is fabulous:  new worlds, new food, new language, new experiences, adventures and delights.

Of course, international travel can also be a little daunting. Once you step outside your door, your supports: your language, your local knowledge, your contacts, your comfort zone, disappear.  You are in the hands of others for the simplest of activities, from getting around, to eating, drinking, sleeping, going to the bathroom, and especially dialysis, because we all need our regular BigD fix, no matter what.

So preparation, planning and once you arrive, vigilance are the orders of the day(s).

Our last trip, as readers of this blog, will know was to Lisbon, Madrid and London for the 2016 Diaverum Global Dialysis Conference.

Apart from the great time we had, I learned a few (more) lessons about dialysing in foreign lands, and I’d like to share them with you.

Arranging Dialysis

As any BigD-er who travels knows, arranging dialysis is not a trivial exercise. Getting units who don’t know you from Adam (or Eve) to make room in their already busy unit needs a little dedication and some negotiating skills. Your Unit Manager is the ideal starting place (see eight steps to scheduling your dialysis for details).

If you are travelling to non-English-speaking countries (like Portugal and Spain), ask for an English-speaking contact in your first email.  You will also need someone at your end who speaks the lingo, at the very least to check that the arrangements being made are the arrangements you want.

This was my second dialysis holiday to non-English-speaking countries – the first was China – and I thought I knew the ropes.  But no.

China was a short stay (a week) and all dialysis was at the same unit. This time, I was away longer (15 days) and I dialysed nine times at four different units: two units in Lisbon, one in Madrid and one in London.

I had forgotten how stressed I can get when I don’t know the people or the unit I am visiting, whether it’s down the road or on the other side of the world. So I usually check everything with the nurse putting me on and confirm all the settings and pressures are as I like it.

But some units in Lisbon and Madrid, nurses only spoke their home tongue and I was stopped before I began. I found this very stressful.

Hot Tips

  • Minimise stress and worry by minimising the number of different units you visit. Getting to know the staff and the quirks of each new unit is highly stressful.
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    May  I have a glass of ice please?

    If possible, minimise the number of units you visit that don’t speak your language. While most have someone that can speak basic English, there is no guarantee that they will be available.  Trying to ask simple questions, like “What is the wireless password?” or “May I have a glass of ice?” can be very difficult and frustrating.

Here the Google Translate App can be very useful, especially if you type out a few standard questions ahead of time.  Just call up the translation and turn your phone into landscape mode: the message will appear in huge letters that can be read from across the room.

  • Some units are less accommodating than others. Ask about any requirements you have (they may be standard in your unit, but against some policy in the one you are visiting).  For example, in the Fresenius unit in Madrid, when dialysing at dinner time I was not allowed to eat anything (no matter that I have eaten dinner on dialysis for 20 years).  To me, “It’s protocol” is another way of saying the unit is organised for the benefit of staff, not the patients – who are paying (€300 in cash – about US$343) for the privilege.
  • Keep up your protein intake. Be prepared for different food and if you don’t like what’s on offer, make sure you eat something else that roughly equates with what you would normally eat.  The alternative is skipping a meal or two, which combined with the additional exercise you get just by walking around will results in you losing weight without realising it.

All of a sudden your blood pressure rises, and doesn’t go down after dialysis, because your base weight has fallen.  In my case, I lost 2 kilos during the first week and I couldn’t work out why my BP was so high.  Once I realised, I reduced my dialysis base weight and my BP returned to normal.

  • Go to units with good lighting that you can control; this makes sleeping and using a computer less of a struggle
  • Find a way to keep your EPO/Aranesp refrigerated. Unrefrigerated, it will last only 7 days. If you run out or have to throw it away, you may find it very difficult to replace.

The Reward

Lisbon and Madrid turned out to be just wonderful. I had very little prior knowledge of them, especially of Lisbon. I knew from Casablanca that it was neutral during WW2 (that’s where Ilsa and Victor Laszlo went to escape from the Nazis!), but not much more. So before leaving, I read a great history of Portugal, called “Conquerors: How Portugal Forged the First Global Empire” by Roger Crowley. It was quite an education, and I was keen to see all the historical places that spawned the age of Discovery.

1-lisbon-tram

But Lisbon is so much more than that.  It is a mediaeval city 1-img_3303surrounded by 18th to 21stcentury modernity.  Tiny trams on cobbled streets wind around the seven hills that embrace that beautiful city. Early morning walks through deserted streets and stairways with brooding clouds over earthquake ravaged cathedrals; evening promenades through the bustling and musical Latin nightlife. The views over the city from the high points reminded me of Malta on the Med with the red- tiled roofs, pastel coloured walls and wrought iron balconies. And a surprise and adventure around every corner.

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Though we were there only a couple of days, Madrid was as bewitching.  Sipping red wine while watching passionate Flamenco dancers on a tiny stage in a tiny café. Night walks where everything was just starting, every tiny shop and café open, people walking in groups, singing, dancing and eating. Beautiful architecture and broad vistas never far from amazing plazas packed with life.

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London was its usual dynamic, delightful, spectacular self.

What’s not to like about international holiday dialysis?

Dialysis​? Choose your topic!

The one downside of a blog is that each time you write a new post, the previous one is shuffled down the page. So as time goes by, all the older posts get lost downstream in one long river of posts. If you want to read about a certain topic, you have to either scan the posts one at a time or use the search function. Either way, it’s not easy to get an overview of everything that’s available.

So, after six years and 213 posts on a large range of dialysis topics, it’s time to raise the bar and make it easier to find subjects and posts that cover various themes. For the last few weeks, I’ve been re-reading and classifying them into a map or framework of topics (or in blog-speak: Categories).

Here is the resulting Map of Topics:

dialysis-topics2

It is quite a list, but hopefully, it is also a useful way to find a topic you are looking for.

Getting there

Is simplicity itself!  The Categories list is on the right-hand side of this screen, second item from the top.  Just click on the down arrow where is says Select Category and the list will be displayed.  The number after the name is the number of posts about the topic.

Also, I am gradually changing the way the posts display, by inserting a break after the first few lines, with a (…more…) link.  This is designed to make it easier to see all posts and get the gist of the topic.

Regarding the Travel topics, there are at least 12 countries listed so far,  but most travel posts actually deal with specific cities rather than countries, so you will need to scan the posts to find the one you need. (There are several better options for managing posts and reviews about travelling on dialysis. I will cover them and my proposed solution soon.)

I hope this is useful!

Flash: Dialysis staff go home and leave patient locked in

This would funny if it wasn’t so serious. Was this just a bad day or is there something fundamentally wrong with the culture of the organisation that runs the unit?

I hope that, like me, most dialysis patients just can’t imagine being locked in their unit after everyone else has followed Elvis from the building.  Hello?  Hello?  Is anybody there?  Anybody?? (more…)

Just starting PD and looking for support

Anna emailed me last week:

Hi Greg,

I stumbled across your blog while looking up info on PD catheter surgery info.

I am a 47-year-old  mom of a beautiful 2-year-old child in California. I inherited high blood pressure and kidney disease. All my siblings in our family have kidney failure.  It kicked in around late 30’s and early 40’s. I was diagnosed the latest at 45 and think it advanced due to my pregnancy.  We were hoping my numbers would go back to normal after the baby but no such luck. (more…)

Skin too thin for a fistula?

John emailed me today:
Hello Greg,

800px-Schema_fistule_arterio-veineuse_-_AV_fistulaI found your Big D and Me blog when Googling “fistula thin skin”. Thank you for the thoughtful blogging about dialysis and your compassionate spirit reflected in your posts. If you don’t mind, I’m writing to ask your advice or for some of your knowledge. If you wish, I can re-post this on your blog site and you can reply there if you want this thread available to all.

My 81-year-old mom has been on dialysis for 5 years in Memphis, Tennessee, USA. She began dialysis soon after heart surgery. To begin dialysis, she went through the usual process of a Permacath while building/growing a fistula in her left arm. The fistula performed well until last Spring when her fistula burst and haemorrhaged twice, each of which nearly killed her. The vascular surgeon opened the fistula site to rebuild but said the fistula was heavily ulcerated and unusable. (I suspect poor care of the fistula over time by medical staff, but that is in the past.)

We had an appointment with the vascular surgeon for her to have a vein mapping done in her other arm for a possible new fistula, but the port, which she had put in after the fistula burst, became infected and she became septic. She was taken to the hospital to have the infection treated with IV antibiotics, so she missed the vein mapping appointment. While in the hospital, the cardiologist and nephrologist said she was not a candidate for a new fistula because her skin is too thin and fragile.

While I believe it is certainly possible that her skin could be too fragile, it’s odd to me that the vascular surgeon, who examined the arm just a couple of weeks earlier, seemed encouraging about the possibility of a new fistula. (It’s hard to know who’s opinion to trust more. I value the cardiologist’s opinion least because he doesn’t deal with the mechanical aspects of a fistula and dialysis scenarios as much.)

Without a fistula, of course, a Permacath is the only other option, which I believe will likely become infected with time.

Question: Have you heard, in your experience, of age and/or skin condition being a factor in evaluating a fistula site, and then completely ruling out the possibility of a fistula?

If a port is going to be her only option, can you offer advice about avoiding infection and catching it early if it happens? (My understanding is that a port is always removed when there is an infection because a foreign body can harbor bacteria. Of course, infection and port removal mean yet more hospital stays and procedures.)

Part of the picture here is my mom’s quality of life. She is very sharp mentally and was walking on her walker a few weeks ago. I believe she could continue with a significant quality of life if she could remain infection free and dialysing regularly without incident. But, with event after event (haemorrhages and infections), she has expressed an unwillingness to tolerate that for long, and I would not blame her.

Thanks for any advice or knowledge you may offer.

My initial response:

Hi John.  Thanks for your email.

I’m sorry to hear about your mother. It is an awful time for both of you.  Give me a couple of days to think and to ask around.  I’ll come back to you soon.

In the meantime, I’ll put up your question as a new post, so that others may help too.

Update:  We’ve had some great responses:

  • Henning, as usual, told it as it is:

….Hello Greg and John,

Unfortunately, the cardiologist and nephrologist are probably right. You do need a certain level of tissue above the fistula for it not to create trouble. On the other hand, I can’t be too deep either. The more shallow the fistula, the greater the risk of haemorrhage. (see the rest in his comment below)

  • Julie Tondello gave us the clinician’s viewpoint:

Hi Greg,

In our experience, the viability of creating a new fistula would generally be established through vein mapping and reviewed by a vascular surgeon and care by a vascular access nurse.

Many dialysis patients are in their 80’s and even 90’s have very fragile skin.

Avoiding infection of a perm cath needs to be the responsibility of nursing/ medical staff and the patient themselves. The incidence of infection will vary from clinic to clinic but a good clinic should have zero infections. Be scrupulous with hygiene is paramount. Many clinics use the principles of Aseptic Non-Touch Technique (ANTT) through the procedure of connection, disconnection and dressing changes.

Small measures but important, patient and nurse wear a mask when connecting/ disconnecting/dressing. Look for early signs of infection, inflammation, temperature, rigors. Change dressing weekly unless dressing compromised. Advise patient not to get permcath wet in shower or pool.

I hope this is of some help.

Regards, Julie

  • In another comment dynamicdialysis (below) suggested seeing a vascular surgeon vascular surgeon, and that fistulas  can be made in the leg.

Many thanks to all so far!

 

Quick read: How to slow/stop your fistula bleeding

1-Snapshot_0-001The key to slowing or stopping your fistula from bleeding (whether it’s after a needle has been removed or (God forbid) a rupture) is to understand why it spurts in the first place.

Our fistulas are created by connecting a high-pressure artery, full of oxygenated blood coming at a great rate from our heart, to a vein, which is usually returning de-oxygenated blood at a leisurely rate (about 80 mL/min) from our body back to our heart (more…)