Self care on dialysis: a journey to control
By days, weeks, months, and years, kidney dialysis patients learn to live with their thrice-weekly life-saving dialysis treatment. The alternative of not having treatment at all is much worse. Most of us still want to live; so, in order that we might continue to do so, we travel from our home to our dialysis unit three times each week and sit in our chair or bed for anything from 3½ to 4½ hours at a time, so that the dialysis machine can do its work and clean our blood as a replacement for our failed kidneys.
As kidney patients, we have little control in our treatment. We are usually told where we will go for dialysis, what time to be there, and what time we will finish. We are reminded about what we can—and usually what we cannot—eat, and how much we are allowed to drink each day. For me, that is one litre of fluid in the day as I am basically anuric. One litre of fluid is quite quick to mount up if you don’t take a note of what you have drunk, as you drink it.
Historically, I have never been one for knowing my weight on a weekly, let alone daily, basis. That has changed with the renal failure. On arrival to the dialysis unit, the first thing we all do is to go and get ourselve weighed. This allows the nurses to calculate how much fluid we need to remove to return us to our “dry weight”. When this is done, the amount in millilitres is entered into the machine, and off we go.
For most dialyis patients, they come in and everything is done by the nursing staff in the dialysis unit they attend. For most people, this seems to be what they want to happen. There is little patient control on what happens. But there is an alternative. It is possible to take some responsibility for your own dialysis; to take part in some of the procedures that are needed to ensure that dialysis functions well.
When I was a patient in the Midland Regional Hospital at Tullamore, I was fortune to be offered this option. I was educated in how to prepare the dialysis machine, how to set up the trolley in advance of dialysis, how to cannulate myself (put the needles in), and how to take them out at the end. These are big steps that I am sure must seem very scary to patient swho are not used to doing them, and who are used to letting the nurses do all of this.
Doing these parts of the process gave me some control over my dialysis. For me, it is important to take ownership of the treatment. It is not something done to me; it is something in which I take an active part.
For a while, once I was on the twilight shift at Tullamore, I did revert to letting the nurses do most of the process, as it meant that I was in and out in as short a time as possible. But then, in the spring of this year, I changed dialysis uni to the B Braun Wellstone Midlands Renal Care Centre in Port Laoise. I visited one week to see what it was like, and then the next week, my care was switched there. One of the main reasons that I moved was that there is a self-care room built into the unit. I am not using it yet, because it is currently in use as the isolation room for COVID-19, but the plan is that when COVID-19 is over, I will be able to do so.
Typical dialysis day
So, I now have more control over my own dialysis. A typical dialysis day for me sees the following happen on arrival to the unit:
- On arrival, my temperature is taken, and I take a note of it;
- I weigh myself, and record that in my notebook;
- I calculate how much fluid we’re going to take off by subtracting my dry weight from the weight recorded, and adding the Washback. Then I record that in my notebook too:
- I then check that I have all that I need to cannulate and to come off dialysis:
- An on/off pack;
- 3 syringes of saline;
- 2 buttonhole needles;
- 1 single-use tourniquet;
- 1 pair of tweezers;
- 2 plasters;
- tape for holding the needles in place;
- disinfection fluid; and
- any medication needed.
- Once I have confirmed that I hae all I need, I wash my hands, and start to prepare the trolley.
- I open the on/off pack, and lay the “on” pack on the trolley setting the “off” pack to one side for later;
- I open the “on” pack, and place the sheets of gauze in the top left-hand corner of the sheet, and place the sheet for under my arm on the pillow on my chair;
- I open the buttonhole needle packs, and allow the needle to drop onto the sheet, then do the same with the saline syringes; and then I put the saline into the needles, and lay the tips of the needles on the gauze;
- Then I put the tweezers on the gauze, and pour some disinfectant liquid over them, and onto the gauze;
- I go back and wash my hands again, and wash the fistula, drying both with paper towels, and then get into my chair.
Cannulation follows with taking off the scabs from the fistula access points, then putting the needles into my arm, and securing them in place with the tape. When that is done, it is time to connect the dialysis machine to my arm via the needles.
I ensure that both needles are clamped, before then clamping the arterial line, taking it off the machine and connecting it to my needle, followed by the same for the venous line. Then it is time to ensure that the machine is set with the right amount of fluid to come off, in the right time. Then, when I am sure that all is set , I start the machine.
Medication and records
As a self-care patient, I have the responsibilty to put in the medication that is needed while I am receiving the treatment. Therefore, I have the anti-coagulation medication ready to put in when alerted to do so by the machine, just after starting the treatment. Later on in the session, there may be Aranesp, Venofer, or Zemplar as required. After putting any medication in, I always record that I have done so, and when, in my notebook. I also enter an hourly record of vital stats including: time; blood pressure; heart rate; blood flow rate; arterial pressure; venous pressure; UF rate; UF volume; and whether the machine is in HDF or HD mode. At the end of dialysis, the nurses photocopy the relevant page and put that in my notes. Historically, all of these vital stats would have been recorded by the machine, but since the cyber attack on the HSE, the dialysis machines have not been connected to the internet, so nothing is recorded that way. My notebook is my way of recording it all.
Responsibility and control
It is a simple thing, but taking some repsonsibility for my own dialysis has given me some control back on how the kidney failure is looked after. Before I started do this, I was quite an angry patient. I was very frustrated with some of the nursing staff. But now, I am much calmer, and I look forward to coming into my dialysis sessions as I have things to do.
It is not just in the dialysis unit that I have some control: I also get myself into the unit by using public transport. The sheer exhilaration of walking up from the station to the unit has really helped my mood. Of course, I know that not every dialysis patient is fortunate to be able to travel in this way, but maybe they could have a think about it.
Taking responsibility for my own care has turned the dialysis session from something that used to be a chore into something I enjoy.
Self-care or shared care?
I understand that total self-care is not for everyone. But shared care can be. I urge all dialysis patients that are fit and able to do some of the preparation to do that. Maybe it is simply weighing themselves when they arrive; maybe it is preparing the trolley before cannulation; maybe it is setting the amount of fluid to take off on the machine; maybe it is starting the blood pressure pump. Whatever part of the process that individual dialysis patients can take responsibility for, will give them some control over the whole process. I know from my experience that that can only do good. If you are a dialysis patient, why not talk to you dialysis nurse about having a go at some of this yourself?