Hospital holiday

Hi everyone. Just a quick post to let you know I’m still alive and kicking. My silence is due to spending what seems to be my annual few weeks’ stay in hospital due to unknown causes.

I went in with a sore hip, which, together with a fever implied BUG.  After many blood and bug-in-a-bottle tests, together with heroic doses of vancomycin, I seem to have recovered.  The bug defeated, though at some cost: daily blood and bottle tests helped drop my HB from 110 to 74.

I’m home now, but with so little energy, my Nephrologist ordered four units of blood. I had the final 2 units last night on dialysis. So this morning I’m waiting for a burst of energy that will enable me to walk further than twice around the bed.

But things seem to be on the up, except the hip, which is taking its time. Hopefully, I’ll be back to the blog with inspiration and enthusiasm in the next couple of weeks.

Cheers.  Greg

Sensipar’s® rocky side effects

Ozzie waddled towards me with a look of mild concern on his face, looked up and said “Poo”. The cat smiles smugly and leaves the room. Julie is wrangling the other four grandkids in the kitchen, helping them cook dinner. Nothing for it. Find a new nappy, wet a face washer (it wishes it was a face washer), a bag to dispose of the evidence and get down to it.

The little joys of being a grandparent.

Like most people associated with little kids, I’m fairly unmoved by poo. Ozzie’s comes from a healthy body, so it’s sometimes messy, but mostly harmless, and water washable. Anyway, anyone who’s been through a transplant or any other major drama that involves ingesting strong drugs knows how thin the veneer is between continence and incontinence (of any variety).

Take this week. After six months of gradually deteriorating Calcium, Phosphate and Parathyroid levels, I re-started Sensipar®. I’ve been to this movie several times before, but such are the delights of the human body, that reactions can vary each time.

What’s different from previous times is that over the years my Parathyroid gland (which was mostly removed seven years ago) has grown back and completely screwed my Calcium/Phosphate balance, to the point where I’ve lost a lot of calcium from my bones.

Sensipar shuts down my parathyroid and my body starts to move calcium from my body back to my bones. To make sure I don’t suffer from calcium withdrawal, I have to take LOTS of calcium tablets. The resulting side effect is industrial strength constipation.

Most people on dialysis are familiar with the constipation spectrum. The sweet spot (so to speak) is at the centre, where a movement is like toothpastesadly, a place rarely visited by BigD-ers. Because we are dialysed fairly dry, most of us live in the zone between pebbles and rocks.

IMG_6132Many mornings after dialysis, when I’m as dry as a chip, things can be a little tough. Passing something the size of my BB-8 robot’s head is challenging but doable. But with the calcium – Sensipar combo, it takes just one sleep to hit the concrete end, where things get harder and bigger, more like BB-8’s body.

After several hours of desperation, pain and trauma, BB-8’s ghostlike, calcium-tinged brother appeared on the scene: relief and exhaustion in equal amounts. More importantly, I realised that I had to avoid a replay of this drama tomorrow at all costs. I. needed chemical assistance in the form of a laxative, and I needed it right now.

IMG_5913After asking around and a couple of false starts, I settled on Benefiber (US) (Aus) – around $9 at Chemist Warehouse). It’s made from wheat dextrin, is gentle on the stomach and it works. I take two teaspoons with breakfast (I mix it with my milk before I pour it on my cereal), and two with dinner (in a small drink of water). It also comes in small sachets (like sugar) so I can use it when I’m eating out without looking like some kind of coke addict.

I won’t need it forever: only until I stop taking heroic amounts of calcium.

But it will stay in the cupboard. There is any number of things we take that cause constipation, from just about everything made codeine and paracetamol, opiate-based drugs, including Oxycodone (also called OxyContin), many anaesthetics and weight-gain supplements like Fortisip and Resource. There are ways around using (or not using) all of these, but Benefiber is a great all-around liberator when we get caught at the wrong end of the spectrum.

Of course, Ozzie is a different matter. Constipated he is not. Maybe I should make sure the Benefiber is out of his reach.

Then there this: more shameful than inspirational

Again, I’m a little late to the party, (this aired in May)  but have you seen this story?

It is a truly shocking report. it confirms our worst fears: US dialysis is in crisis. The most expensive dialysis service in the world has the highest dialysis mortality rates.

Two for-profit giant companies (DaVita and Fresenius) deliver 70% of the care, overwork and underpay staff while making enormous profits. From this report, it is clear that the industry is overwhelmed by bad incentives, poor oversight, and profiteering.

Any wonder why over 70% of the fistula rupture stories on this blog are from US readers.

The one small light at the end of the tunnel is the California Dialysis staffing bill.

But first, have a look at the report (Language warning!).

Medscape has a great article about\ the California bill, (it’s free, but you may need to log in), that has attracted a huge number of comments, all in favor.

For example, one nurse wrote:

…The problem arises when you take care out of patient care.  By this, I  mean that the monetary value of running a clinic outweighs the quality of care provided by the staff.  You can not expect Staff to give the quality of care when they are overloaded with 4+ patients to care for and only have 15 minutes between each patient to rinse back, take VS, close up their access (be it a catheter or a access (graft or AV Fistula)) and put another patient on by doing their VS, quick assessment, cleanse their dialysis catheter/ graft/av fistula, start their treatment, document on the patient and give report to a charge nurse.

And another:

…I was tired of on-call and went to work in-center and my ratios in New Jersey were 3 patients per tech, nine patients/RN.  I had to assess 9 patients and put on 3 every shift and when you have techs they may put the patient on the wrong bath, not do vital signs timely, with no time between shifts if you had a patient hypotensive, it was insane.  A patient died on that unit, but not assigned to me that day because the techs did not do their vital signs and the nurse was busy doing something else. The B/P kept on dropping and no one assigned in that area ever told the nurse assigned there.  You still have to do care plans, monthly notes, give blood, give meds, and get yelled at because you are not doing turn over fast enough.

How the No boosters keep a straight face is beyond me.

One interesting thing from the video: when these companies are sued, they settle.

Food for thought for anyone who has had a loved one die from a fistula rupture in one of their units,

Community Run Dialysis – Inspirational!

Over the last week, I’ve been working on a new project that involved making a list of all the dialysis units in Australia (more on that soon). In the process, I discovered that all units are either public (free via Medicare) or private (fee charging), except one, which is owned and run by dialysis patients and their families.

Run by patients and families? What the…?

Of course, I had to know more, so I contacted them and discovered firstly that they’ve been around a while and I’m a bit late to this party. But that made finding them even more heartwarming and inspiring.

This community run dialysis service follows a very different model. It is focussed not just on dialysis, but also on the community, on keeping people together. Imagine a place where family and community, culture and country are integral to a happy and fulfilling life. Where people live in small communities, huge distances from large population centres.

Imagine also, that many of these people can, for various reasons, be more than twice as susceptible to kidney failure as the rest of us. And, because their communities are too small to justify individual, government-funded clinics, the only option they have is to leave their community and move to a city where they can dialyse. That is, move permanently from their lifetime home.

KintoreMost are elders or elderly. Their separation hits them hard: they become lonely and isolated and begin to lose the joy of life. Their families and communities miss them; miss their wisdom, guidance, and love. People began to worry about the future of their communities without elders there to provide leadership and pass on cultural knowledge; there was a very real risk of disintegration.

So they drew deep from their community, art, and culture, and changed the game. I’ll let them take up the story:

Determined that renal failure should not be a one-way ticket … away from family, country and everything important, senior men and women created four collaborative paintings.

Orange -bg1000

Kintore Women’s Painting

Browns KintoreMens

Kintore Men’s painting

With the help and support of Papunya Tula Artists (their artist’s community), Sotheby’s Australia and local NT politicians, these were auctioned at the Art Gallery of NSW on the 11th of November 2000, raising over $1 million dollars to set up a dialysis service at Kintore (the first of the tiny remote communities in the Western Desert of the Northern Territory).

Patrick Tjungurrayi

Patient Patrick Tjungurrayi receiving dialysis in Kiwirrkurra with his grandchildren.

Since the commencement of dialysis treatment in Kintore in 2004 we have grown to have dialysis units in 8 remote communities, as well as at the Purple House in Alice Springs. 

Truck and chairThen, in 2011, we created the Purple Truck, our mobile dialysis unit, to give patients the opportunity to spend time in their home communities where there is not a permanent dialysis unit, where they can to reconnect and recharge.

Janie Miama at Docker River

Patient Janie Miama receiving dialysis in Docker River

In 2003, they incorporated as Western Desert Nganampa Walytja Palyantjaku Tjutaku Aboriginal Corporation (Western Desert Dialysis). The name means ‘Making all our families well’ and it recognises that people must be able to stay on country, to look after and be looked after by their families.

Sarah brown 2

Western Desert Dialysis CEO Sarah Brown with her award

And success breeds success. As they have grown, they’ve attracted other talented people, like their Chief Executive, nurse Sarah Brown, who was voted Australia’s top nurse for 2017.

And organisations like Medicines Australia, Papunya Tula Artists and Fresenius Medical Care, whose generosity and support helped start and run the Purple Truck.

Governanmce AwardThere’s more. In November 2016, Western Desert Dialysis won the 2016 Reconciliation Australia/BHP Billiton Sustainable Communities Indigenous Governance Awards, Category A Award for incorporated organisations. Professor Mick Dodson, said: “It’s their humanity that stands out in their governance. They’re a family that really cares for every member in the way they deliver services. Aboriginal culture has been wrapped around access to modern medicine and allows it to be administered in a holistic and culturally appropriate way. They’ve … got the administrative nuts and bolts of good governance and are taking innovative approaches to community leadership.”

Take a bow, Western Dialysis Directors.

Still more: Over the last couple of years, they have developed some great education resources for dialysis patients, including this video (in 3 local languages as well as English). It’s excellent. Simple, easy to understand and educational for anyone on dialysis. Check it out!

How great is all this? So many good messages. Beginning with the amazing power of art to influence and change lives.

And smart, inspired people taking responsibility for their own health and well-being to deliver dialysis the way they most need it.

Sounds like yet another example of the ePatient movement, not just sitting back and hoping.

There is a lot more to their story: Check out their beautiful website (showing some of the fabulous artwork) and subscribe to their mailing list. I have a feeling there’s a lot more excitement to come.

Will my boyfriend die young?

Kristy sent me an email recently:

Good evening Greg. 

My boyfriend suffers from dense deposit disease and although he is fine at the moment, I fear the time he may need dialysis or a transplant. I suffer from anxiety so it’s hard to shake these worries. He’s very active, likes a drink, likes to socialise and I just worry about how much of an impact kidney failure will have on his life. Any experience you could share would be a big help to me. At times, I catastrophise the thoughts to simply the fear that he will die young (he’s 26 at the moment).

Kind regards, Kristy

Me:

Hi Kristy, thanks for your email. As I understand it, dense deposit disease is bad news for kidneys, in that it primarily affects kidney function. So you are right, kidney failure is a likely outcome in the future.

How far away that is, only time will tell. Everyone is different, but even sick kidneys can hang on to some function for years. I was diagnosed when I was 20 but, by gradually changing my diet and keeping reasonably fit, I didn’t start dialysis until I was 43. So I had 23 years of fairly normal life before dialysis. I say fairly because during the last couple of years I felt progressively sicker. But during that time, I got married, had three kids and lived a full, satisfying life. Then, of course, I went on dialysis.

At the time, I thought my life was over, but within a few weeks I began to feel healthy again and found that I could still live a full and healthy life: I just had to build dialysis into my weekly routine.

This pattern is not at all unusual, many people have the same experience. And it is likely that you and your boyfriend will too.

Your boyfriend is your boyfriend because of who and what he is and how you are together. Those things won’t change once he starts dialysis, even if he has to modify his life to fit it in. The challenge can bring you both closer and make your bond stronger (it did for me and Julie). Life will go on and you will be happy and sad, frustrated and delighted in the same way you are now.

So don’t catastrophise (I love that word!). Take the long view and all will be well.

Regards, Greg

From Kristy:

Greg, thank you so, so much for this email. It has really helped me to feel a sense of ease regarding the future. I really appreciate you taking the time to respond.

Exciting new drug slows or even halts kidney failure

Earlier this month the biotech company Dimerix Pty Ltd, based in Melbourne, reported extremely encouraging results from its recent clinical trial for chronic kidney disease, with their anti-inflammation drug DMX-200.

 

Kathy Harrison CEO

Kathy Harrison, CEO of Demerix 

Recently, I was delighted to meet with the CEO of Demerix, Ms Kathy Harrison and to talk about the results and the opportunities for kidney patients.

 

What DMX-200 does

One of the first signs of kidney disease is albumen in our urine.  Albumin is a type of protein that is normally found in the blood. We all need protein; it’s an important nutrient that helps build muscle, repair tissue, and fight infection.  But protein should be in our blood, not our urine.

If our kidneys are damaged (by high blood pressure, diabetes, etc), protein can “leak” out of the kidneys into our urine. Having protein in urine is called “albuminuria” or “proteinuria.” If that is not bad enough, our immune system often then reacts by inappropriately attacking our own kidney cells causing inflammation and even more proteinuria, in a rapid downhill spiral.

Dimerix’s DMX-200 is designed to help slow or even stop proteinuria, by reducing the inflammation.

Results

New drugs usually go through three phases before release

  • Phase I clinical trials test a small group of people (e.g. 20-80) to evaluate safety (e.g. to determine a safe dosage range and identify side effects).
  • Phase II clinical trials may test from twenty to several hundred to check that it works as intended and to further evaluate its safety
  • Phase III studies may test several hundred to several thousand by comparing the therapy to other therapies, monitoring for adverse effects, determining dosing schedules etc.

These results were from the first part of a Phase II trial (Phase IIa), conducted in Melbourne. Of the 24 patients who completed the trial, six achieved more than a 50% drop in proteinurea levels (25%). Fifty percent is a major reduction and a clinically meaningful result, halting what can be a rapid decline to complete kidney failure.

Conversely, four weeks after treatment stopped, three patients experienced more than a 50% increase in proteinurea levels, returning to previous, pre-trial levels. This suggests that the Dimerix treatment not only slowed the proteinurea but helped maintain it at that lower level.

Importantly, the trial also demonstrated that the treatment appears to be very safe: there were no serious adverse events.

Aside from the promising results, Ms Harrison said further analysis also identified which patient sub-groups are more responsive to this treatment, but at this stage that data is being kept confidential for competitive reasons.

Special early access

Of the 24 patients, 11 (45%) have continued on treatment under the Special Access Scheme. This is an arrangement where the TGA (Australia’s FDA) allows Dimerix to offer patients the opportunity to stay on the treatment after finishing the trial (at little or no cost!), even though it has not been formally approved.

The Next Trial – Getting involved

The next trial, the Phase IIb study, is expected to start towards the end of 2017. It will look at a more specific dose and treatment for a longer period at that optimum dose. It’s expected that about 30 patients will be treated for 6 months.

This new study will recruit a more targeted patient population based on responders in the Phase IIa trial, in addition to patients with the rare FSGS (focal segmental glomerulosclerosis) disease, which is one of the causes of chronic kidney disease.

The new study will be conducted around Australia, in Melbourne, Sydney, probably Brisbane and Perth.

If you wish to be involved, you can register your interest now via info@dimerix.com, or shortly, via a Registration button on the website. Dimerix will acknowledge your interest and add your name to their register of interested patients. In the last quarter of 2017, they will advise you of the process for getting involved (via your nephrologist).

DMX-200 is an exciting new development for patients with chronic kidney failure everywhere. Unlike stem cell treatments, promising, but on the distant horizon, this has the potential, to slow and even stop proteinurea in its tracks for some patients, now. It’s so close we can almost touch it – in fact, you can if you are part of the trial.

General release could be a year or more away, but from these results, DMX-200 is shaping up to be our next weapon of choice in humanity’s ongoing war against kidney disease.

Dimerix LogoNote: For the speculators amongst us, Dimerix shares are available on the Australian Stock Exchange as DXB, at $0.012 per share.

 

For the technically minded

Dimerix’s treatment involves the combination of two existing drugs, irbesartan with propagermanium. Using its core technology, called Receptor-HIT, Dimerix hypothesised that two receptors that are commonly found in the kidney, angiotensin II type I and CCR2, have a joint interaction. In preclinical studies, it then showed that by blocking both receptors, more than an additive effect could be achieved in kidney disease. Irbesartan, an anti-hypertensive drug that is prescribed to 70% of people with CKD, blocks the angiotensin receptor and propagermanium, which is an anti-inflammatory compound, blocks the CCR2 receptor.

All patients in the study were dose escalated across five different doses from 30 mg per day to 240 mg per day of propagermanium (no placebos). All patients entering the study were already receiving irbesartan. One aspect the company is building data on is the optimum dose with animal studies and results from competitors showing that too high a dose can reduce treatment benefit.

 

 

My Fistula, My Friend

Artery - vein fistulaI’ve had my fistula since 1995. It started out as a 5cm (2in) red scar, where the surgeon had opened my right forearm just above my wrist and joined my proximal radial artery (that runs down most of my arm to feed fresh blood to my hand) to my cephalic vein (which runs from my hand up the topside of my arm carrying used blood back to my heart).

At first, there was not that much else to see. The high-pressure blood from the artery made the vein stand out slightly above the flesh of my forearm, but no one would notice it and it was sort of normal.

BruitnpicExcept for the thrill, and the bruit: the feel and the sound of the turbulence created as blood from the artery gushes into the vein at the join (the anastomosis). The gush happens each time my heart beats, say, 55 times a minute. The thrill is the heightened tickly pulse I feel when I put my finger onto that join; the bruit is the slow-march drumbeat that pounds relentlessly when I press my fistula to my ear. Both were very primal, raw reminders that my life had changed forever.

Part of me naturally designed for lifting and carrying, cuddling and elbow-bending became the most unnatural of things: a dialysis needle gateway.

My poemAnd it has served me well so far, enduring the business end of over ten thousand 15 gauge needles, firstly stabbing a new hole each time, and later, using the same (button)holes. Buttonholing has helped reduce the tear and wear, but it has still grown and evolved into the sinewy forearm snake it is today.

And despite the occasional, blatant, What the … is THAT? look I get from strangers, it is my friend. If it had a name, it would probably be Ralph. Ralph was my best mate when we were young. He was a poet: smart, conflicted, loyal, explosive and high maintenance. I think of my fistula as a poem written in blood, with many of the same features. It tells my story – who I am and how I got here. So I cherish it, guard it closely, exercise it and service it regularly with vitamin E and TLC.

But a fistula, no matter how poetic, is not natural and will not be taken for granted.

In the early days, accidental or incompetent needling painted my arm with the Fistula Bruisers team colours – black, blue and yellow. An occasional fall where I thought I’d burst my fistula scared the hell out of me and Julie; but thankfully, a healthy fistula is a robust body part. The odd wandering buttonhole tunnel needed a new entry point; sometimes roadblocks needed various clean-outs and rebores to change the flow path.

And each episode inscribes a new verse on the poem.

carpal-tunnel1In 2010 my right (fistula) hand started to misbehave: it was weak and clumsy, my fingers and thumb were numb, with pins and needles and pain at night. I asked around and the universal answer was carpal tunnel syndrome. The carpal tunnel is an actual small tunnel, at the base of my wrist, that carries the nerve that gives sensation to my thumb and most fingers, and tendons from my forearm. Any swelling around the tunnel puts pressure on this nerve and stops it working. Carpal tunnel syndrome is very common in people with long-term fistulas, where the fistula grows bigger and generally causes swelling and compression on the nerve.

The solution is to cut into the tendons that form the tunnel and release the pressure. I had it done that year, and it worked a treat: I was once again able to do up my left cuff button in a flash. And I had a new 2cm scar at the base of my hand, mini-matching the fistula scar on my forearm to boot.

That was seven years ago. Just recently, the symptoms have returned. I went back to the carpal tunnel surgeon, who was sceptical. Carpal tunnel syndrome rarely comes back, so he arranged an MRI. Result: a new syndrome. The symptoms were caused by ischemia (not enough blood flow) in the hand; most likely from Dialysis-Associated Steal Syndrome.

Numbness and painSteal syndrome is where the blood normally destined for my hand is ‘stolen’ by my enlarged fistula. This happens in about 1% of fistulas (old and new). It can be fairly mild, like mine, all the way to complete loss of fingertip circulation and gangrene.

There are several treatments available, including reducing the flow by wrapping a band around the fistula vein, removing a portion of the vein, or moving the join between the artery and the vein further up the arm. All involve fairly complex vascular surgery.

That’s the state of play today. My 22-year old fistula is strong, healthy and just a bit of a drama queen.

I’m not sure how things will work out. I’ll start with visits to my nephrologist and the vascular surgeon who did the last service. Then decision time: perhaps once more around the surgery dance floor, perhaps I’ll just live with a clumsy hand.

Either way, I expect some new lines in my poem anytime soon.

Situation normal.

 

 

Guest post: Holy Roman Holiday

Lorraine from Melbourne shares her excellent Roman adventure:

I want to share with you my experience after starting haemodialysis at Diaverum Diamond Valley  in August last year.  As well as taking courage to successfully return to my part-time work in a gradual way after a period of depression following my hospital admission  I managed with no hitches to undertake a short overseas trip to Rome.

Even though I was extremely ill earlier last year with a long hospital stay, including nearly two weeks in ICU and with no immediate prospect of overseas travel, I decided with much faith to renew my expired passport. Little did I think that I would need it to travel to Rome in February this year!

I went with two friends to participate in a congress and private audience with Pope Francis for the 25th anniversary of an international network of business entrepreneurs, workers, students, researchers united by a vision of the world and the economy oriented to the common good and the integral development of the human person and society.

With the wonderful help of Chris, our Unit Manager, my dialysis sessions were seamlessly organised with Diaverum in Rome and providentially I was not even charged! But there was an even more extraordinary moment of providence when I met Pope Francis personally as a representative of the Zone of Oceania for this network. The photo says it all!

But there was an even more extraordinary moment of providence when I met Pope Francis personally as a representative of the Zone of Oceania for this network. The photo says it all!

Lorraine with Pope Francis

Lorraine with Pope Francis

It certainly does. Thanks Lorraine, you are an inspiration BigD-ers everywhere.

Driving Under the Influence of Dialysis

People around Australia were shocked when four-year-old Brax Kyle, who was walking hand-in-hand with his father, was struck and killed by an out-of-control car in a medical centre carpark at Berwick, in Melbourne’s south-eastern suburbs.

Detective Sergeant Mark Amos said the four-wheel-drive careened over a median strip into the carpark of the Epworth Medical Centre. “As he was negotiating a left-hand bend, the driver for some reason failed to take the bend,” he said.

The second shock came when it became clear that the driver was a 56-year-old man who had reportedly been returning home after dialysis treatment.

The Twittersphere lit up following this revelation, (more…)

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, (more…)