Tag Archives: Chronic Kidney Disease

How can donor rates be increased? : guest post

I read the following in Kidney Health New Zealand’s annual report and with KHNZ and Paula Martin’s permission I have reproduced her great report.  I am thrilled to see such important research being undertaken and as you’ll read, Paula has great motivation.  Paula is a PhD Candidate in the Health Services Research Centre, School of Government, Victoria University, Wellington, New Zealand.

Kidney Health New Zealand Research Grant

Paula Martin

In 2006 I donated a kidney to my husband. At the time, I was just focusing on getting through the year long donor work up and supporting my husband while we coped with the impacts on our lives of him being on peritoneal dialysis. Only after the transplant did I realise just how few living donor transplants are done each year in New Zealand. In 2006, only 46 other live donors gave a kidney to someone; last year the number had climbed to 57 live donors, but the number of people needing a transplant had also increased dramatically, with around 600 on the official waiting list.

What could be done to increase the current rate of kidney donations? The low number of transplants is a concern because we know that for most people with end stage renal failure, a transplant is the best treatment. In addition, it is cheaper than keeping people on dialysis. In order to develop solutions, we needed research to tell us what the barriers to living donor kidney transplantation are in New Zealand; how similar to, or different from, barriers in other countries these are; and what people involved in the renal community here think could be done about those barriers, so that more people wanting a transplant can get one.

In 2010, I decided to do some research on this topic to fill this gap. Supported by a research grant from Kidney Health New Zealand, I’m currently undertaking a PhD in Public Policy based at the Health Services Research Centre in the School of Government, at Victoria University of Wellington. My focus is solely on living donation, not deceased. Around half of all kidney transplants now come from living donors and with the increasing demand for kidney transplants and the shortage of deceased donors, living transplantation has to be a critical part of solving the problem. The barriers to living donation and deceased donation are different so it’s important to think about them separately.

We know from overseas research that there can be many different barriers: for example, patients needing a transplant often find it difficult to approach their family and friends about whether they might consider living donation; people who want to be donors can face practical barriers such as loss of income while they take time off to recover from the surgery; and many people who would like to be donors discover that they aren’t compatible with the person they want to donate to, or that they have a medical problem of their own which makes them unsuitable. A particular problem in NZ is that Maori and Pacific people often find it harder to get a transplant than European/Pakeha. There are likely to be many different reasons for this. Cultural attitudes to organ donation may be one factor, but a bigger issue may be that it can be harder for these patients to find a donor who meets the strict medical suitability criteria because of things like the high rates of Type II diabetes in these populations.

There is no single solution to this problem – this is an extremely complex issue and we’ll need a variety of different initiatives to make a difference to it. So, I’ve been looking at our legislation and current policies as well as how renal services operate on the ground, and talking to a range of different people – patients, renal specialists, transplant coordinators, patient support groups, managers in District Health Boards and senior government officials and politicians – to find out what they think the issues are.

Finding out what the issues are from a patient perspective has been a big part of the research. With the assistance of the three renal transplant units, I carried out a postal survey last year of all the people on the kidney transplant waiting list and received nearly 200 replies. I’ve followed that up with a small number of in-depth patient interviews. The early results of this part of the research suggest that, as in other countries, patients find it very difficult to “ask” someone to be a kidney donor which often stops them talking to their family and friends about living donation. Furthermore, patients that do get offers from people to be kidney donors often find they are incompatible or the potential donor is medically unsuitable for some reason. Health professionals I’ve interviewed have provided valuable insights into what the issues are from their perspective inside the health system.

I’m aiming to finish this research in 2013. I hope it will be of use to practitioners, policy makers, patient groups and anyone else interested in making a difference to this problem.

Thanks to Kidney Health New Zealand for supporting this work with a grant towards the costs of doing research.

Have you got diabetes?

I am sitting in a meeting of the Australian and New Zealand society of nephrologists.  I want to do them out of a job.  Will you help?

Diabetes is the number one risk factor for Chronic Kidney Disease (CKD).  High blood pressure is number two.

About 10% of the population has CKD.  They are much more likely to die than the rest of us.  Some of them will go on to need dialysis or a transplant.

Scared?  You should be.

What can you do?  Eat well, shut your computer and go for a 30 minute walk.  Do the same tomorrow.  Take a friend with you, especially if they are overweight and at risk of diabetes themselves.  If you are wise, you are already out the door and not reading this, if not…please act soon.

The critical 1st 6 months post dialysis

Know someone about to start dialysis?  I am sitting in a conference hall and have just heard a fascinating talk by Prof Chris MacIntyre about the danger to other organs for those undertaking dialysis.  The stress dialysis puts on the vasculature is the culprit.  Myocardial stunning can occur in nearly 2 out of 3 paients each dialysis session .  The effect in creases many fold with every extra litre of fluid removed.  The death rates are much higher amongst those who exhibit the stunning than those who don’t.

It is not all bad news.  Cold dialysis and more frequent dialysis seem to help.  Randomised Control Trials are underway to test these interventions.  A portable continuous $100 Dialysis machine may not just be cheaper, but may have less side effects!

In the meantime, support from friends and family are all the more important in those few months.

Deserved

Colleague Dr Suetonia Palmer just won a prestigious L’Oreal for Women in Science award.  She’s one of my “go to people” for nephrological type questions (ie all the stuff I don’t know).  This award is very well deserved!  The press release on scoop gives all the salient details.  Just let me add my bit.

What impresses me about Suetonia and her work is her attention to detail and her dedication to dig for the truth.  Her work is focussed on systemic reviews with the Cochrane Collaboration.  Quite simply, this is about as good as it gets for evidence based medicne.  Her mission is to gather evidence from multiple trials for a particular treatment or clinical practice and to analyse that evidence in detail to answer the age old question “Does it really work?”  Her focus, of course, is kidney disease.  An example is a meta-analysis of Vitamin D supplementation in Chronic Kidney Disease (1).  Suetonia and colleagues trawled through data from 76 trials, assessed them for quality, and combined the data.  Apparently Vitamin D had been widely used to prevent and treat secondary hyperparathyroidism – a consequence of the failure of the kidney to handle Vitamin D properly. The result was that despite its wide use, the beneficial effects of Vitamin D compounds on patient-level outcomes were unproven.  We all want our doctors to use the best available treatment with the least side-effects, and we don’t want unnecessary (or expensive) treatments.  Suetonia’s work enables that to happen.

Well done Suetonia.

Our Suetonia

1. Palmer SC, McGregor DO, Macaskill P, Craig JC, Elder GJ, Strippoli GFM. Meta-analysis: vitamin D compounds in chronic kidney disease. Ann Intern Med 2007;147(12):840–53.

See more of  Suetonia’s publications at http://www.otago.ac.nz/christchurch/research/ckrg/ourpeople/index.html.

The costs and inequalities of diabetes

Sam Sam the kidney man

Kidney recipients are brave and inspiring.  The following is an extract (used with permission) from the Autumn newsletter of Kidney Health New Zealand (www.kidney.co.nz). I am fortunate enough to know the specialists that helped this young man.  Admirable work – well done people.

Sam’s story (benefactor of the John Velvin Trust)

Hello, my name is Sam High. At the age of fifteen, I was diagnosed with chronic kidney disease. This particular kidney disease is unique to my family tree. It did seem however that the disease wasn’t prominent in my immediate family, but alas it had merely lain dormant seven generations and reawakened in me.

A visit to the doctor to treat a case of strep throat, which had begun to infect other parts of my body, identified the issue with my kidneys. I was fortunate enough to have caught the disease early on; this meant that measures could be taken to slow down progression of the disease. At this point in time I still had one hundred percent of my kidney function, but unfortunately, my disease was causing a steady decline in their performance. This was a hard thing to come to grips with, for both my family and myself. I was emotionally devastated, left with the feeling of being robbed of my golden years. Fortunately enough though, my kidneys were not deteriorating all that fast, giving the impression that there would be roughly twenty or maybe thirty years of life left in them. Although the deterioration of my kidneys was slow, it did have effects on my health.

I was definitely not the fit, young, healthy, sporting kid that I used to be, even gathering the energy to wake up in the morning was a task. This lack of energy took its toll on my schoolwork. Before the sickness, I had been one of the top students in my classes, but now I was struggling to keep up. I credit this mainly to missing about fifty precent of my classes due to sick days. In my last year dropping out was a definite consideration, but thanks to the support of my family and my school’s counsellor I was able to renegotiate a schedule that would work for me. Instead of six classes I would take three, much to the disapproval of higher ups and the three teachers of my dropped classes. This worked out well, the workload was a lot more manageable, and the empty slots gave me time to rest and study. I ended up achieving my goal of getting University Entrance, and surprisingly, only just missed out on achieving NCEA level three.

Despite the majority of my friends heading off to begin a new stage in their lives in the form of University, I had decided to stay in my hometown of Timaru yet another year. This decision was mainly due to my lack of health and my uncertainty in what career I wanted to pursue. Thankfully, I was able to achieve something out of this year, enrolling at the Aoraki Polytechnic for a Diploma in Information Systems Management course. This was a perfect fit for me on so many levels. Computer work wasn’t physically draining on my body, I had a good background in mathematics and art (two useful tools for programming), and I had always wanted deeper understanding of the inner workings of computers. I was enjoying studying again, even despite my deteriorating health. This could really be seen in my results, back performing at the top of my class again for the first time since I became sick.

Near the end of the year (for reasons unknown), my worst fear was beginning to come true. My latest tests were showing that my kidney function had started to decline rapidly, with a newly estimated life span of only a couple of months. This was one of the scariest moments to ever happen to me, I was in no way ready to handle something as life changing as this so early in my life. I was thrown into a state of depression, I hadn’t yet come to grips with my kidneys failing twenty years away, let alone a month or so away. My family and I had no plan of attack at this stage; we hadn’t had a reason to have a plan until now. My family went into overdrive letting all and any family know I needed a live kidney donor. I was surprised to find how many people put their hands up for me-not just family but also unexpected generosity of friends. This was an enlightening moment in my life and without these people’s love and support I would not have had the will to get through this dark era in my life. Despite the overwhelming generosity of my family and friends none of them appeared to have compatible blood types with me-a necessity for successful transplants. This meant that I would have dialysis. Dialysis works as an artificial kidney, cleansing your systems of the toxins that kidneys usually work to filter. It is possible for people to live on dialysis for long amounts of time, but it can be really degrading on your system. The plan for me was to go on dialysis temporarily while we tried to sort out a donor.

While all of this was happening I was still studying, with my exams only a few weeks away. Even though I felt and looked liked death I managed to complete the entire year of study, even putting off my dialysis surgery by a day so that I could complete my final exam. I felt like I was running out of donor options and was beginning to worry if I would ever find one, around this time one of the greatest moments in my life occurred. During a conversation between my Grandma and my Uncle Ross (who was living in England at the time) the topic came up about my situation. Without hesitation Ross decided to donate me one of his kidneys, a true testament to his character! Words can’t bring justice to the generosity of his decision, not only because he was giving me a kidney, but also the fact that he was willing to come all the way back from England to New Zealand to do it. He also needed to perform initial tests, which from what I heard were in no way as easy as getting the tests done here in New Zealand.

Unlike most people think, it is not possible to have a kidney transplant straight away after you have the donors consent. There is a large range of time consuming tests needed to be done to test the compatibility of the donor’s kidney with the recipient’s body. Ross and I were thankfully compatible! At this point, I would like to thank Sarah Armstrong, transplant coordinator at Christchurch Hospital; she coordinated all these tests at lightning speed. It ended up taking a couple of months instead of several months. Unfortunately, before all these tests had begun I had actually undergone the surgery to have a catheter inserted into my stomach area. This would allow me to drain a special fluid in and out of my body four times a day, acting as my artificial kidney. I felt as though I was walking dead, I wasn’t eating, when I did it wouldn’t stay down for long. I must have lost about 15kg while being sick-which for an already small guy made me look like a pasty, white twig. In all seriousness, I don’t remember a whole lot of my short time on dialysis; my brain was just mush I guess. I was lucky in that I was only on dialysis for about three months; some people are on it for what must seem like an eternity. For any of those people reading this in that situation my heart goes out to you and I wish you the best of luck.

Once all of the tests had been successful, a date was finally set for my kidney transplant. I can still remember every moment from the day of my transplant. It was an emotional rollercoaster; just writing about it brings back vivid emotions and feelings. I had been up all the night before, far too anxious, scared and upset to sleep, I was relieved my catheter would be taken out, and I was probably the most terrified that I have ever been in my life about the surgery. My surgery had been planned for 10am but was pushed back to 11am, and then was pushed back to 1pm, and then 3pm. The anxiety was so overwhelming I felt as though I was going to explode.

Ross first underwent his surgery to have one kidney removed, after which I would be called upon and brought to the surgery room. You know those moments when every second seems to take an hour; this was definitely one of those times, just wanting 3pm to hurry up so I could get it over with. The time finally came, I was told Ross’s surgery had gone perfectly and that I would be needed now. I remember getting on to the mobile bed and then being whisked away from my mum, waving right until I was dragged through the large hospital doors. Before the surgery I was literally shaking with fear, I couldn’t even talk. Luckily there were lovely nurses there to cover me in blankets and talk to me, helping to take my mind off what was about to happen. After a little while longer I was taken into the surgery room and after being injected with some anaesthetic I was out cold. It’s always a weird feeling for me waking up after a surgery, I’m always disorientated, confused, and still really groggy. Once I was able to maintain consciousness for longer than 10 seconds I was taken back to my room. Despite not being able to move, having tubes hanging out of everywhere, and the unbearable heat (it was honestly about 35°c in my room- it was torture!), I could already tell that I felt better, better than I had felt in years. It was obvious to others too, all of my family and friends who visited noticed that I had a new glow about me, I was no longer the white, pasty self that I had been for the last few years.

After six month of rest, rehabilitation, monitoring and some obstacles including: daily blood tests, the Christchurch earthquake, weekly trips to Christchurch to see specialists and having a stent removed through my urethra (makes my face cringe just saying it) I was all better and I moved down to Dunedin to continue studying. My diploma I had worked so hard to achieve counted towards the first year of a three-year degree in Information Technology. It was around this time that I was introduced to the Velvin Trust via an email from the Canterbury Kidney Society. There aren’t many groups like this about so I was extremely excited to try becoming involved in any way that I could. I applied to become a beneficiary of the Velvin Trust. It sounded as though it would be a perfect fit for me and my situation. I exchanged emails with the Trust and had a meeting with Carmel from the Kidney Health New Zealand, who assessed me to produce a report, which would be sent to the Trust. The Velvin Trust decided that I would be a great candidate for them, this was amazing news for me. I was lucky enough to meet the founders of the Trust, Sally Velvin and Doug Crombie who flew all the way from Wellington to come meet me personally at my house in Timaru. They are two of the nicest, most inspiring people I have met. They talked to me about how they had created the trust in honour of John Velvin (Husband to Sally and close friend) so that they could help out others who John would have empathised with, that are suffering from kidney disease. They also mentioned the advantages of being part of the Trust, which included: mentoring, business contacts, contacts of other kidney disease sufferers, and also potential monetary assistance. To date the Velvin Trust has helped me out with the contacts of people in similar situations to me, so that I can discuss things unique to people in our situation, and they have also offered to help support me further my education by helping to pay for courses/papers. I am truly grateful to be a beneficiary of the Velvin Trust, not just for the assistance that I can acquire from them, but also the fact that there is an organization out there that really cares and supports me- and people like me. It’s an uplifting feeling. I hope to one day be able to help and support people the way the Velvin Trust does-they are truly inspiring.

It is 2012 now; I am twenty turning twenty one this year. I was 19 when I went through both my dialysis and kidney surgeries. Ross is now living in New Zealand; he made a speedy recovery, leaving the hospital after three days. The human body is capable of living with only one kidney, more or less the same way as it does with two kidneys. This is certainly true for Ross, he was back out doing extreme sports and was back working again, only a short time after the surgery. I am also living life to the fullest with my one working kidney. I’m healthier and fitter than I have ever been. I have learnt a lot from my experience and have matured well beyond my years. I have finally got my life back and I am loving every second of it.

I would like to take this time to thank some important people:
My specialists: Dr Martin Searle, Dr Nick Cross, Dr John Irvine, Dr John Schollum, Prof Rob Walker

Sarah Armstrong, Kelly, Grandma, Grandad, Nana, Penny Coffey, Lesley Horsburgh, Christchurch Kidney Society, Graeme Cox Trust, John Velvin Trust.

Special thanks to:

Ross: You saved my life!

Mum: You worked overtime and then some to keep me alive.

Dad: I don’t know how but you’ve got a story to turn every negative situation positive.

Olivia (My sister): Your love meant the world to me.

Hannah (My girlfriend): You stayed with me through something tougher than any young couple should ever have to face.

For further information on the John Velvin trust go to http://www.kidneys.co.nz/John-Velvin-Trust/

Getting the users perspective

I can’t possibly expect to be able to comment on what it is like to be on dialysis – I’ve only observed the process.  To try and understand more I have begun to search out some blogs by those on dialysis.  Here are two:

The Facts on The big D. is a blog post by Ellie.  Ellie is a young woman (the same age as my wife) in New York in need of a transplant.  Ellie comes across as a straight shooter.  She’ll tell us when it stinks and she’ll count her blessing aloud.  Sitting in a dialysis centre is the last place she wants to be. Thanks for the honesty Ellie.

D(ialysis) Day   Joe has just begun dialysis for the third time in his life.  This is his first blog post from the chair. He first began dialysis at 15, underwent a transplant from his mother which lasted a couple of years, went back on dialysis for 4 years, underwent a second transplant which lasted 10 years and has now returned to dialysis.  What strikes me is just how long Joe needed to wait for that second transplant.  The same is here in New Zealand.  Folks, it is really very very important that you tell your family if you are prepared to donate your organs – Do not rely on there being something on your driver’s license, this has no legal effect and is often ignored by grieving relatives.  Have that conversation – today.

New visions:

No one will need to wait more than 6 months for a transplant

$100 dialysis will be portable so most will not need to spend 5 hours, 3 days a week, sitting around with tubes in them.

By the way, both these people have End Stage Renal Disease following Chronic Kidney Disease (CKD). Joe’s form of CKD appears to be from a heredity disease.  Ellie does not say.  Neither are overweight or appear to have anything other than a normal life.  CKD affects about 13% of the population (many do not know).  Do not be complacent. If in doubt, get your kidney’s checked.