At the conference in Orlando last month there were many interesting speakers. There were patients talking about their experiences with home dialysis, there were doctors talking about many different subjects and some industry people talking about new technologies. All in all it was interesting and exciting all around.
Aaron Battle talked about emergency preparedness, an easily forgotten subject that we all should think about since when it’s too late, it’s really too late!
But that is not what I want to talk about. I want to talk about a different kind of preparedness that was discussed at the meeting.
Dr. Thomas Golper had a presentation on “Red flags in home HD” where he discussed safety issues. I will not go through the entire presentation but pick out a few important points from it.
Basically there are two areas where things mostly go wrong. The first one is the machine and the other one is the vascular access.
I am not going to talk much about machine problems. Leaks can be damaging to our homes but usually don’t have any impact on our health. Other problems connected to the machine are either non-damaging or of a kind where I need to educate myself to talk about them. And that is exactly the point of this post, getting better and more informed as a patient or as a care partner.
When it comes to vascular access there are three overall problems: contamination of the access site which could lead to sepsis, air embolism and venous disconnect. All three things are very dangerous and potentially lethal.
There is one simple way to prevent access contamination and to lessen the risk of sepsis. Keep the cannulation process as clean as possible. Water, soap and alcohol are your friends. Make sure to wash and disinfect your hands every time you touch your equipment, your needles and your access site. Rather too much cleanliness than too little.
Air embolism comes from air in your system. That is your entire dialysis system including all your tubing, your filter and finally your body – the latter being the most important but air can only come from the former in some sense.
The way I prevent venous disconnect is quite simple… tape. Not tape upon tape upon tape, but strategically placed tape to lessen the danger of my needles falling out. And I experiment. When pulling out my venous anyway I see how much it takes to pull it out with the tape still on and I have gotten to a point where it takes all the strength I have – and I am a pretty strong guy! Now when it comes to nocturnal I think it’s a whole other ballgame and I haven’t gotten there yet – so please bear with me on my ignorance in that field.
Then Dr. Golper went on to talk about some of the key attributes we should consider for ourselves when we are dealing with safety issues. He talked about being educated, curious, honest, brave and confident.
Education means training and credentialing. I have to say I received only cursory training and certainly no credentialing. Ongoing testing and competencies, again those are lacking in my particular program. Continuing education courses, forget about it, never did it! And finally research, this is one of the things I could do for myself and I haven’t done yet. But all the other things are shared by the HHD center and the patients, where the center should ultimately be responsible for its implementation. But we as patients also have a responsibility to ask for it.
Under curious he talked about looking out for what is wrong with the person who is dialyzing and how does the illness affect what I am doing? These questions are really important. As a psychologist I have been acutely aware of the cognitive issues we experience. They sneak up on us when we are not getting proper treatment. This is highly dangerous since we feel like we are all right when we aren’t. We also have to consider the way we do things, why do we do them one way and not another. Why do things work and how do they work. All important questions since we want to have an established routine but we also want to think about why the routine is the way it is and what we potentially could do to make it better.
Honesty is about asking questions to make sure we are doing things right. Did we do things right? Did it work? Was there anything that could have been done better? (We might have done what we were taught but maybe that could be improved on) What was my role in the problem? Without that level of honesty we will never learn and become better at what we do.
Brave and confident means we as HHD patients and care partners are competent. When something goes wrong we should be able to find out what went wrong and why it did. We should be competent enough to fix the problem. We should never be afraid of problems that can happen. If we can’t live up to these skills we should work on some of the above skill sets so we obtain the level of bravery and confidence that it takes to running our dialysis at home competently.
The presentation touched on many of the issues I have had with dialysis in general. Like the poor level of information that I have received from those who were supposed to give it to me. I have obtained much of it by myself because I am curious and have a natural longing for being well informed. I am just wondering how many others never learn to have this level of competency because they are not told about it or they are not curious enough to learn all the subtleties that are involved in the procedure.
One of the big discussions at the conference was why so few people are given the choice to do HHD. It is a well known fact that when asked 90% of nephrologists would prefer home treatments while less than 10% of their patients actually receive treatments at home. And I suspect how lack of knowledge and education could be one of the answers to that discrepancy.