Dialysis, Transplant or Conservative Care. Which one for you?

Last week I met with Fiona Spargo who is with the North West Dialysis Service (part of Royal Melbourne Hospital).  She is working to establish a Conservative Care service for End Stage Renal Failure and dialysis patients.  This is part of a world-wide trend, so watch out for it in your area.

Up until a couple of years ago, there seemed to be only two choices for those of us blessed with ESRF: dialysis or transplantation.  But actually there is a third, the let-it-take-its-course option.   That is, accepting our health will gradually worsen until we pass away.

Selection this third choice is by no means rare.  Many patients of advanced age suffer from multiple problems and diseases, and treating their kidney disease will not improve their overall quality of life.  Also, the health of patients who are on dialysis gradually worsens, eventually to a point when dialysis is no longer maintaining their quality of life. Finally, for some people, dialysis or a transplant is simply not for them.

As a result, a lot of work has been done around the world over the past few years on providing better support to people in the final stages of ESRF.  What began as palliative care, which focussed on care during the dying process, has expanded into Conservative or Supportive Care, which focuses on enabling the best possible quality of life by relieving suffering, controlling symptoms, and restoring/maintaining functional capacity throughout the remaining years of a person’s life.

This means that Conservative Care regime begins as soon as the problem is identified, regardless of whether they choose dialysis or not. One dialysis unit, St Georges Hospital in Sydney, provides patients with a questionnaire that enables the unit to assess the quality of life of each patient every two years, and to arrange the appropriate additional care. See this presentation for more details.)

The questionnaire is interesting.  It measures many of the things I just don’t talk about with my nephrologist, and don’t get the time with the nurses in the unit:

• Physical Functioning: limitations in all physical activities including bathing and dressing
• Life Role: problems with work or other daily activities
• Bodily Pain: limitations due to pain
• Vitality: levels of energy
• General Health: either poor or excellent
• Social Functioning: interference with normal social activities due to physical or emotional problems
• Emotional Functioning: limitations as a result of emotional problems
• Mental Health: ranges from feelings of nervousness and depression to feelings of happiness and calmness.

Obviously, the answers change over time, and maybe it would be useful to use this framework whenever we go into one of our health “dips” (eg when we feel weak and useless for more than a few days, or get a maddening itch that won’t go away).  The result would be an additional Conservative Care intervention to help us back to health.

A typical Conservative Care clinic includes:

• Palliative/Conservative care physician
• Renal registrar (learning opportunity)
• Renal Clinical Nurse Consultant
• Social worker
• Dietician.

This movement to Conservative Care began in the UK and has had significant success.  See this paper for more details.

Why do we need Conservative Care?  The St George study results say it all:

1. Patients on dialysis are suffering a high symptom burden
2. Symptom burden is reflected in the poor quality of life, physically and psychologically
3. Physical and emotional parameters appear the most changeable over time.

Conservative Care targets all of these findings.

So, rather than Dialysis, Transplant or Conservative Care, the way forward is actually Dialysis, Transplant AND Conservative Care.  Bring it on!

Holiday Dialysis in Brisbane – a restful break from the routine

Last week Julie and I went to Brisbane for a short holiday around a long weekend.  As any member of the BigD club knows, this meant some pre-organising.  We decided to go about six weeks ago, which is when I raised it with the Chris, the ever-obliging Manager of my BigD Unit.

There are two dialysis units I know of in Brisbane, one at the Greenslopes Private Hospital and the other at the Wesley Hospital in Auchenflower.

I chose Greenslopes because it used to be a Repatriation Hospital for military personnel, and I had good experience with the Concord Repat when I was in the navy.  Good experience?  I met my future wife there!  It was better than good.

The Repats have an interesting history, which I am happy to share.  The federal government established military hospitals in all states during WWII, to look after injured servicemen and women returning from the various frontlines around the world.  They were:

• Prince of Wales Military Hospital in Randwick (1915, for WWI veterans), until the newly built Concord Repat in Sydney (1953)
• Repat Hospital Hobart (1921 on, for WWI and WWII veterans)
• Adelaide Military Hospital at Springbank in Daw Park, Adelaide (1941)
• Heidelberg Military Hospital in Melbourne (1941)
• Greenslopes Military Hospital in Brisbane (1942, just after Pearl Harbor was bombed)
• Hollywood Military Hospital in Perth (1942).

All were renamed Repatriation Hospitals after WW11, with a primary role of supporting returned service people.  In the 1990s, all were either merged with state hospitals or sold off to become private hospitals (like Greenslopes).  Hence, though it bears no resemblance to its previous Repat incarnation, I chose Greenslopes.

The BigD club from the practitioner’s viewpoint is a small one.  Most people, doctors, nurses and technicians who have been working in dialysis for a while get to know everyone else, either because they work with them, coordinate various activities between institutions, sit on committees or boards, meet or present papers at conferences, change jobs or just coordinate patient holiday visits.  Whatever the network she used, Chris arranged my Brisbane visit within a couple of days.

It is difficult to stick to your routine when you go on a BigD holiday to another unit.  Most units I have visited won’t allow daily dialysis; they have too many patients and thus not enough empty spots.  My five day per week routine became a one day on, one day off routine, which I found difficult, since I had to always watch my diet and fluid intake.  No relaxing on this dialysis holiday!

Still, I presented myself at the Greenslopes dialysis unit at about 1:45 pm on Saturday for my first run, scheduled for 2pm.  It is a fairly big unit, with about 20 seats arranged in bays.  They were expecting me and all was ready to go. I was on within 15 minutes, had a good run and departed just over three hours later.  There is always something you can learn when you are visiting other units.  Two things stuck in my mind here:

1. Each unit serves a drink sometime through the run.  About ten minutes after the tea and sandwiches at Greenslopes, they come around again with pikelets!  Butter or strawberry jam? I chose the jam.
2. Chris, my nurse for both runs, had a great way of folding the gauze used to stop bleeding when the needles come out.  It was almost too fast to see. Lots of triangles and wings, and wallah! a 1 cm square pad ideal for focussing pressure on a small area. (If I go there again, I will take a video!)
3. One thing I can’t understand.  It must be known to everyone how uncomfortable, sticky and sweaty it is to sit for 3-4 hours on a vinyl-covered seat without any cover, not even a sheet.  I know I am biased, I deeply missed my lovely lambswool seat cover AND sheet.  Just a sheet for visitors next time would make a big difference.  I’d be happy to pay for the laundry.

The Brisbane trip itself was a nice break.  We had a lovely lunch with our daughter in law’s parents, our son and his wife and Harry, our grandson.

And three days in Brisbane is actually enough.  It is a pretty city on a big river.  As far as attractions, it reminds me of a big country town, where most people do things with friends or groups, rather than be entertained by big city attractions.  So most points of interest are confined to the city proper or along the river.  We bought full-day tickets for the City Cat, a catamaran ferry service the plies the river from end to end and got on and off as we pleased.  The walk through the city’s Queen St Mall was good for a coffee and a snoop. Southbank, on the opposite side of the river was full of parks and displays, theatres and art galleries, so we got our cultural fix.  Not a good place for a snack though: all fast food, and salt on anything that sat still for more than a minute.

The second day we felt like being at a beach.  The Big One is 77km south of Brisbane: the Gold Coast.  Sun and surf, and unconstrained development and fast food.   Not too much serenity there!  So we decided on checking out the local coastline, once miles of mangrove, now a suburbia of drained and concreted waterfront views.  We headed to Manly, a waterfront “village” about 20km north of the city.  We drove the Esplanade, checked out the views and the pool, had a coffee.  Then south past lots of developments and new roads and eventually to the pointy end of Wellington Point:  a pretty place that juts out into Moreton Bay.  There is a picnic area with some very old and nicely manicured Moreton Bay Figs, several electric barbeques and a pleasant view into the blue of Moreton Bay.  Also a very large carpark, two boat ramps and a pier cut into the mangroves for the local boating enthusiasts.  Boating is very popular all along the Bayside (mangroves not so popular).

All in all a restful rather than stimulating stay in sunny Brisbane, made possible by my new friends at Greenslopes.  It will take a week or so get back to my normal routine, after which I will begin planning my next BigD holiday (in even sunnier Cairns).

No post this week – long weekend

No post this week – Queen’s Birthday long weekend. While I’m a staunch republican, I’m happy to accept Queen Liz’s birthday holidays.  They won’t last forever.

Dialysis, transplants and wimpy bones

When I was young, I used to joke about falling down.  You know the usual refrain: “Oops, fall down go boom!”  Now, after 15 years on the BigD, and two transplants, things have changed a little. These days it’s: “Oops, fall down go snap.”

How has this come about for a strapping individual like me?  Throughout our lives our bones are constantly being reabsorbed by the body and being rebuilt using two critical building blocks: calcium and vitamin D.  Until we are about 30, the process is positive or in equilibrium.  After that, our bones start to be reabsorbed faster that they are rebuilt.  At about 50 it is common to have a lower than average bone density (but still be healthy).

However, dialysis and especially transplants hasten the thinning process.  With transplants, our old friends prednisolone and cyclosporine-based anti-rejection drugs have a big effect, limiting the bone rebuilding process.  While there are no symptoms to bone density loss – though falls that result in a broken wrist (like mine!) or hip are considered good indicators – there is a test, called a bone mineral density (BMD) test, which uses low-energy x-rays.

In fact, transplant recipients losing bone density is so common that it is now a standard part of the transplant regime to visit to an Endocrinology clinic for a BMD test at least annually.

There are degrees of wimpiness in bones.

• If your bones are just beginning to get thinner than normal, losing their density and strength, it’s called Osteopenia.
• If you do nothing, it usually advances to become Osteoporosis.  Osteoporosis is where your bones are thin and fragile because you have lost bone mass caused by a deficiency in calcium, vitamin D, magnesium and other vitamins and minerals.  If it progresses, osteoporosis can lead to loss of height, stooped posture, humpback, and severe pain.  My mother certainly had it in the last few years of her life.

I had a BMD test a while ago, and at the last Endo clinic visit, I was told I had osteopenia.  The treatment is simple enough.  I take a calcium supplement, combined with vitamin D, every day.   Also, I must take regular exercise that involves weight bearing, like weight lifting, low-impact aerobics, jogging, and walking.  Luckily this is just what I do at the gym and when I go running around the block.  (While improved bone strength is a good motivator, I still find it hard to get out of bed early.)

I suspect that I’m in good company.  All around the world my fellow BigD and transplant osteopenias are dropping calcium and vitamin D and taking the occasional exercise to fight off the other Osteo.  Looking around the web, I found some great exercises at the Mayo Clinic for preventing osteoporosis.  We are not alone.