I recently received an email from Ron asking about tips in planning a safe dialysis holiday. I hope the answer encourages Ron and other members of the BigD club to take the plunge.
Hi Greg. Your blog was recommended to me by Colette at Kidney Health Australia. After reading some of your blogs I am inspired to try and do what I always wanted to do when I retired (travel) but have been reluctant to pursue because I have had to go on dialysis after my transplant was compromised due to the treatment for a couple of opportunistic infections.
I have been on dialysis since December 2011 and dialyse 3 times per week at the Penrith Community Dialysis Centre in NSW, Australia.
I am keen to travel to places like Singapore and Hawaii and later to the UK/Europe. My questions to you re:
- Do I just make contact directly with the various dialysis units in each country?
- How do I know if those centres are ok – well run with appropriate practices and equipment?
- Have you travelled to all these places and if so what was your experience?
I would appreciate any advice you could give me. Regards, Ron
Hi Ron. There is always a level of unknown when you travel to another BigD unit. While the fundamental process of haemodialysis is always the same, different units in different countries vary in the level of service and care they offer. I have listed the things I normally expect from a dialysis unit, together with a few quality indicators at the bottom of this post.
When I am planning a trip, the first thing I do talk to my Unit Manager, to forewarn them and to discuss my options with someone who has arranged holiday BigD (probably many times) before. Then I go to the web. Global Dialysis is a good place to start. They have a very large list of units located around the world, and there are often reviews from other BigD-ers who have been there.
I also do a Google search for dialysis in the city I want to go to. This often adds a few more units to my list of possibles. I go to each unit’s website (they will be either a private centre or a unit operating inside a hospital). Their descriptions and photos usually give a good indication of what you can expect.
Almost invariably there will be an email address of the person in charge. I send them an email, setting out what dialysis I would like and when, and I give them some of my dialysis info (how many runs I would like, usual number of times per week, length of run, type of dialyser, type of access, etc.).
I ask about the cost of treatment. If they are in a country that has a reciprocal agreement with Australian Medicare (New Zealand, the United Kingdom, the Republic of Ireland, Sweden, the Netherlands, Finland, Italy, Belgium, Malta, Slovenia and Norway), I confirm that the fee will be waived, and I check if there are any additional fees (eg Sweden charges about $30 per session admin fee). If not, I expect to pay between US$300 and US$800 per session.
If I am unsure about the quality of the unit, I ask a few questions based on what I expect at home (see a list of typical expectations below).
If they come back to me with a provisional OK, then it’s time to get my unit talking to their unit. I give the contact details to my Unit Manager and talk through what needs to be done. They will send each other the technical stuff about my dialysis and confirm a few things, like if I have HIV (almost everywhere wants a current blood test report) or syphilis (only China, for some reason…).
I stock up on my meds. For long or distant trips, I get my meds sorted into day-by-day bubble packs at the pharmacist. This makes them easy to track: each day is measured out for the entire trip (plus a week or two for emergencies), so I don’t run out unexpectedly. (Don’t forget your EPO/Aranesp for the period you are away. I forgot and it was VERY difficult to get replacement stock. I finally did, but only after missing two doses.) EPO and Aranesp have to stay refrigerated (or at least cool), so pack them in an insulated container for the trip.
I have not dialysed in Singapore or Hawaii, but I am confident that I could find a safe and reliable dialysis service in both places. Western Europe (with the exception of the Medicare countries above) are expensive, but safe and worth it.
Indicators of a Quality Dialysis Unit
It is Safe
At a minimum, you should expect a SAFE dialysis session:
- The environment is modern, clean and subject to stringent infection control procedures
- Dialysis machines are from mainstream manufacturers like Gambro, Fresenius, NXStage, Nipro
- All lines, the dialyser and other consumables are replaced after a single use
- Unit is managed by experienced, dialysis-trained staff
- There is a sufficient number of staff to setup and support each patient through each run
- A nephrologist/doctor is available at call if required
- Patients’ beds / chairs, tables and trolleys are cleaned and sterilised thoroughly before re-use.
Some creature comforts would be nice:
- A sheet over the chair (that vinyl gets sticky and sweaty)
- Some kind of entertainment facility for each patient
- An internet connection, for email or catchup TV (if fast enough)
- Food and drink available (free or for a fee) if required
- Shoe shine service (kidding).
They Track Patient Quality Metrics
The unit should produce a range of Patient metrics that demonstrate the quality of care they provide. Metrics are usually monitored each run and tracked and reported regularly to patients and medical staff. Typical metrics include:
- Dialysis adequacy – Kt/V, which shows that patients are having enough wastes removed from their blood during dialysis. The top part of the fraction (Kt) represents the volume of fluid completely cleared of urea during a single treatment; the bottom part of the fraction (V) is the total volume of water in the patient’s body. Patients with Kt/V lower than 1.2 have a higher risk of health problems.
- Blood chemistry levels (eg potassium, urea, calcium, phosphate, albumin, etc).
- Haemoglobin levels to manage anaemia effectively.
Questions about Unit Quality
In the US, medicare.gov provides a dialysis unit rating website, called Dialysis Facility Compare. The website provides detailed comparison information about the services and the quality of care that (US) Medicare-certified dialysis facilities offer. In addition to the above Patient Quality Metrics other metrics include:
- Patient hospital admission rates. Even when they’re getting dialysis treatments regularly, patients with kidney failure often get sick and have to go to the hospital because of infections or other problems that may be related to the dialysis treatment. Units whose patients have lower ratios of hospital admissions may be better at helping their patients avoid these serious problems.
- Patient death rates are low. Generally, patients with kidney failure don’t live as long as patients with normal kidneys. Many factors affect how long a dialysis patient lives. Some of these factors are under the control of the patient (like not skipping treatments), and some of these factors are under the control of the facility (like making sure patients get all the treatments the doctor prescribes). Patient deaths lets you know if the patients treated at a certain dialysis facility generally live longer, as long, or not as long as expected.
Start with countries like Australia, Canada, the UK, the US and those in Western Europe. Once you have done a few of these, you will be ready for the rest of the world (where the above quality points become much more important).