Three Times Per Week Is Not Enough

My latest visit with the Nephrologist in Oct 2012 to review my pathology results revealed that I have probably lost any minor remaining kidney function that had existed (although fortunately my bladder is still working). The level of toxins in the blood had jumped up at my previous visit and remained high. These results were despite changing the type of “kidney” or filter that I use on the dialysis machine to try to correct the problem. The major concern apparently is the high level of “parathyroid hormone (PTH)” which causes the bones to release calcium into the blood to counter the defect of calcium. This of course can lead to “brittle bones”. So in order to rectify this and reduce my PTH and other toxins, I need to increase my dialysis. During the normal five hours dialysis session I get a diminishing effect with the best value being the first few hours. So increasing the number of hours per session is not going to help. There is no escaping the need to increase the frequency and do dialysis every second day instead of three times per week.

Fortunately, being a home dialysis patient I can do this easily without having to fit into some timetable at a hospital or satellite centre. Its just a bit of a bore and doesn’t allow me that much treasured two night break each week and restricts my flexibility if I have a night time function. So I guess I just move onwards and do more dialysis and hope that the much anticipated transplant will arrive soon. The average wait time is still about 4 to 4.5 years and I have now been on dialysis for 3 years.

Things That Go Bump In The Night

I am often asked why I do dialysis at night. When I started dialysis in Oct 2009 I was still working fulltime and wanted to continue. Doing dialysis at night meant that I had my days free. Of course not finishing until about 1.00am and getting up to commute to work at 5.15am left me rather tired by the end of the day. Anyway, after 18 months of that I am now only working two days per week and neither of those days follows a dialysis night. I still prefer to do my dialysis at night because it leaves me all day to do as I wish during my semi retirement.

Doing dialysis at night has an added difficulty because the phone support by the nursing staff and the technicians is after hours and no one likes being woken at say midnight to answer a question. Home dialysis does have some complications and apart from the telephone there is just me to resolve any issues. Here is a list of the things that go bump in the night and the list is still growing:

1.       Most problems occur when getting started. Often the machine will get confused when doing its rinse then won’t complete the testing. This requires the “Windows” solution, reboot it and start again.

2.       If the testing works then the next point of failure is the Prime. This is where the machine flushes the air out of the blood lines using saline. Sometimes it won’t start the Prime and sometimes it won’t stop. I can usually overcome this by starting or stopping the pump manually.

3.       By far the biggest problem is the operator. Yep that’s right when I forget to do something or get distracted. Like failing to connect the water hoses, or forgetting to disconnect the saline after it has finished Priming.

4.       Assuming that the machine works correctly and I don’t forget something the next issue is to get the cannulas correctly inserted in my arm. This is probably the biggest single issue and the one that puts many people off home dialysis. There are endless mistakes that can be made here but the one that hurts is when I put the cannula right thru the blood vessel (either the artery or vein) and then it bleeds into the tissue and leave a big black bruise. Fortunately I have only done that once.

5.       Once the cannulas are in, the next step is to flush the tube attached to the cannula and it is very easy to forget to clamp the tube which results in blood everywhere. It only takes 2-3 heart beats to pump enough blood to require a major clean up. Apart from the mess it doesn’t do any harm but you have to learn not to panic.

6.       The final step of connecting to the machine pumps the blood thru the blood lines and replaces the saline which is pushed into a bag for disposal. The machine often stops with an alarm and the only option is to just keep restarting the pump until all the saline is gone. This is annoying and usually means the machine needs a service.

7.       Only when all the setup is completed and the machine is running can you determine if the pressures in the blood lines are correct. A wrongly inserted cannula will not allow the blood to pump and the machine stops with alarms. Having to fiddle with a cannula or reinsert it at this stage is complicated and not much fun. Twice now I have had to stop the dialysis altogether and retry the next day.

8.       Once the machine is running the next 5 hours should be uneventful but possible problems include; power failure, water failure, twisted blood line, blood leaking from a connection, a cannula moving or heaven forbid a cannula being pulled out.

9.       I have experienced a power failure during an electrical storm and while the machine continued on battery until it was restored (only seconds) the water pump also stopped.

Well I guess that’s about it for now. For all the above problems I would still highly recommend home dialysis rather than going to a hospital. It is much more flexible and more comfortable.

How does dialysis work?

The simplest description, if you remember your high school chemistry is, Osmosis. Wikipedia describes Osmosis as, “the movement of solvent molecules through a selectively permeable membrane into a region of higher solute concentration, aiming to equalize the solute concentrations on the two sides.”

Basically the dialysis machine creates a disalate solution comprised of acid (very mild and smells like vinegar) mixed with Sodium Bi-carbonate and warm (body temperature) water (pure H2O having been purified by a water filter. The solution is then fed into the cylindrical filter that you can see on the side of the machine. The filter contains thousands of micro-fibres which form the membrane with the blood on the other side of the fibres. The toxins in the blood then pass through the membrane and into the solution which then gets flushed away into the waste system. The good stuff in the blood like calcium and iron etc do not get filtered out as those molecules are of a different size. The purified blood then continues on through the blood lines and back into my arm. The blood is mixed with a very slow drip dose of Heparin to thin the blood and prevent it from clotting. The Heparin is in a syringe connected at the front of the machine.

The disalate solution continues being fed into the machine as the blood continues to be pumped into the filter at a rate of 300ml per minute. This continues for five hours. If my maths are correct that means the dialysis is processing some 90 litres of blood each 5 hour session three times per week. That’s a lot of blood but it still doesn’t fully replace the function of the kidneys that work 24 x 7.

In addition to the above process I have a few other things that need to be done during dialysis:

1.     Each month I need to take a blood sample for tissue typing. This is fairly easy once I have the cannula connected to my arm I simply draw off a syringe of blood and inject it into a vacuum tube. I then deliver it to the Red Cross where they perform a white blood cell count and this is then ready for comparison with any potential transplant donor.

2.     Most dialysis patients also suffer a lack of iron and because they cannot absorb iron through the stomach or intra muscular the only way to get the iron is to infuse it direct into the blood stream. Each month I add a small vile of liquid iron into a 100ml saline bag which I hang on the machine and control the drip rate as it infuses into the blood line.

3.     The latest issue is my lack of energy caused by inability to create red blood cells. The red blood cells carry oxygen and without that I run out of puff very quickly. So I now need to stimulate the creation of red blood cells by, you guessed it, a weekly injection. Again the injection of Eprex can be done directly into the blood lines so that is quite easy. So far I have noticed any difference but its early days.

As you can see a 5 hour dialysis session is never dull and in the next post I will explain what happens when things go wrong.

When will you get a Transplant?

This is the most often asked question by people who know that I am a dialysis patient. The truth is I don’t know. Those on the waiting list don’t get a number in the queue and just wait your turn. Its not that simple.

Firstly, you have to get on the waiting list. Only those that the medical profession consider a good candidate get on the list. That’s about 10% of all patients doing dialysis. So let’s do the maths; about 15,000 dialysis patients Australia wide at any one time and growing means about 1,500 patients on the waiting list (and growing). With about 350 transplants performed Australia wide each year (growth rate not matching the growth in patients) that means about a 4-5 year on average. However, children under 18 years of age get preference and compatibility is the major criteria. I started Dialysis in Oct 2009 so Oct 2013 will mark four years.

To get on the list requires that you pass a battery of tests including blood tests, x-rays, ultrasound to ensure vascular system is ok and a heart stress test. Of course you have be a non smoker, not a diabetic and not obese. If you are on the list for more than two years they will probably repeat the tests to ensure you are still fit enough. Its worthwhile remembering that the expectation is that a kidney transplant will last 15 years and doctors like to achieve their KPIs just like other professionals. Many people are excluded from the waiting list because of other illnesses and while there is no official age cutoff, transplants after age 68 are rare.

Once on the list it then comes down to compatibility. Firstly the compatibility of blood type A, B, AB or O. It doesn’t have to be an exact match of A to A and B to B etc because it will also depend on a patient’s tolerance for the donor’s antibodies. So for example an A type can be compatible with an AB as long as there is a tolerance for the antigens. Also an O type donor is considered the “Universal donor” meaning they can donate to anyone. But because O type is rare such donors usually only get matched to O type patients. After blood type matching the next compatibility test is for Tissue Type (this is the white blood cells) and this is where my studies fail me as I don’t know how they compare white blood cells. For anyone who’s interested my blood type is A.

An increasing number of transplants in Australia are done from live donors. Either family or friends making an exceptional gift to a CKD patient. In these circumstances the live donor is thoroughly tested for general health and especially kidney health to ensure that a kidney donation will not have an impact on their health. Generally a person can live quite comfortably with just one kidney and most live donors have longer than average life span because their health is so good. Australia is also pioneering a cross donation approach where a family is willing and passes all the medical tests but is not compatible. They may find another willing donor in the same situation and but who is compatible with their patient and a cross donation can be arranged.  However, by far the most common transplant situation is where a donor is a deceased donor. So if you haven’t yet signed up as a organ donor please consider it now. Also don’t rely on just ticking the box on your driver’s licence. Log onto the Medibank web site and register formally as a donor and get an organ donor card to carry in your wallet.

Some quick facts

A lot of people ask me about what causes the high rate of kidney failure. I have added a few facts below that might help. The facts are taken from the Kidney Health Australia web site. 

• 1 in 3 adults are at increased risk of developing Cronic Kidney Disease (CKD):
• 1 in 9 adults have at least one clinical sign of existing CKD
• A person can lose up to 90% of their kidney function before experiencing any symptoms
• Approximately 1.7 million Australians may be affected by early-stage kidney disease and don't know it
• 11.3% of all deaths in Australia are due to, or associated with, kidney failure
• Every day about 6 Australians commence expensive dialysis or transplantation to stay alive
• About 50% of all organs transplanted from deceased donors are kidneys
• Most people with CKD will die from cardiovascular causes before requiring dialysis or transplantation
• Aboriginal and Torres Strait Islanders experience excessive death and disability due to CKD

Dialysis

• A total of 10,341 people were receiving dialysis treatment at the end of 2009
• 23% were receiving dialysis at a hospital, 30% were dialysing at home and 47% in satellite centres
• Home dialysis includes:
  • continuous ambulatory peritoneal dialysis (8% of all dialysis)
  • automated peritoneal dialysis (12% of all dialysis)
  • home haemodialysis (9% of all dialysis) - this is the type of dialysis that I do.
• Rates of home haemodialysis range from 14% in New South Wales to 1% in South Australia

Transplantation

• One organ and tissue donor can save up to 10 lives and imporve the lives of many more.
• Australia is a world leader for successful transplant outcomes, yet has one of the lowest donation rates in the developed world.
• As at 31 December 2009, 1,105 of the 10,341 people receiving dialysis (11%) were on the transplant waiting list, but typically only 6% receive a transplant each year.
• 58% of people on the waiting list are aged between 45 and 64 years, and 80% are waiting for their first transplant
• The average waiting time for a transplant is about 4 years, but waits of up to 7 years are not uncommon.
• On average one Australian dies each week while waiting for a transplant
• The survival rate following a kidney transplant is high - 98% of recipients are alive at 1 year, and 88% are alive at 5 years
• In 2010 there were 548 kidney transplants recipients from deceased donors.
• Live kidney donations represented 40-44% of all kidney transplants

How much does kidney failure cost the Australian Health System?

• The best available evidence we have on cost per person per year on dialysis is:
  • hospital haemodialysis - $79,072
  • satellite haemodialysis - $65,315
  • home haemodialysis - $49,137 - this is what I do. 
  • peritoneal dialysis - $53,112
• The costs of treating end-stage kidney disease from 2009 to 2020 is estimated to be around $12 billion to the Australian Government
• Increasing the use of home dialysis over the next 10 years is estimated to lead to net savings of between $378 and $430 million for the health system

Holidaying on Dialysis

Yes it is possible. You can see the size of the dialysis machine and it weighs about 80kg plus it has a water filtration plant, so its not able to accompany me on holidays. But with a bit of work it is possible to get guest facilities and still have a holiday. In Aug 2010 we managed to get guest facilities at Noosa private hospital and so we drove to Noosa and had a lovely 10 days relaxing and enjoying the winter sun. This year we were very fortunate to link up with a charitable group called Dialysis EscapeLine Aust (DELA) which organises temporary facilities in various locations. This year on board the Dawn Princess cruise ship.We had a wonderful 14 days in early Dec 2011 cruising the South Pacific islands including Fiji, Noumea and Vanuatu. Fantastic food , great service, all the facilities you could want and very relaxing. The weather was far better than Sydney. I highly recommend it. For many patients it was the first time they had been on hoilday since commencing dialysis and for some that was many years ago. We even had one lucky patient that was book on the cruise some six months in advance and then got a successful transplant before we left. He was still able to join us and we were all jealous that he didn't have to do dialysis. Hats off to the organisers at DELA (also dialysis and transplant patients) who organised such a great holiday. We have strange conditions regarding medical benefits. Because we were outside of Australia most of the medical benefits funds would not pay for the cost of the dialysis and at $250 per session it soon adds up. Fortunately my medical fund did cover me. Go figure.

Having a Nephrectomy (Kidney removal)

Because I have Poly Cystic Kidney disease my kidneys have grown in size with the many cysts attached. So much so that the kidneys were displacing other organs and I had a considerable belly. The average kidney is about a few hundred grams and would sit in the palm of your hand. However, my kidneys were about 2 kg each and about the size of a small football. The specialist said that I was not eligible for a transplant because there was no room inside the Peritoneal cavity for a new kidney. That meant I had to have one removed. We opted for the left kidney as it was the one that had previously given me the most problem. So in May 2010 I went to RPA and had a major surgery to remove the kidney with an open operation. The main concern for the surgeon was controlling the blood vessels. The kidney function is to clean the blood and hence it has many blood vessels attached. It was about a five hour operation with 30 staples to close the wound and the recovery was six days in hospital and a lot of pain. Full recovery was three months but I still had a large welt around the wound which took several more months to eliminate with exercise. I'm glad it is done and I am told that a transplant operation is not as gruelling (I'll let you know when I get there). Of course I still have the right Kidney and it is just as big as the left kidney was and it is only providing minimal urine output. It is possible that at some stage with  a new working kidney in place I may have to have the right kidney removed.