Note to my readers - the following post and all others prior to 02/15/2008 are creations from my memory of events and represent what actually happened at that time:
The training is over, the equipment is installed, and the rest is up to us!
When the home dialysis team came around to the clinic offering to help anyone interested in changing to a different way of living, I thought to myself “Why should we do all that work?” “I can just sit here is this chair, let a nurse put the needle in and watch TV for 4 hours.”
They showed a video produced by the British Columbia Ministry of Health. A number of home dialysis patients were interviewed, all with glowing stories about feeling better, looking better, drinking whatever they wanted, taking less medications and “getting their life back” by not being tied to a clinic appointment every other day.
I did some math and figured that if the treatments in the Province’s clinics cost them $100 an hour to provide, then home dialysis would save them over $10,000 the first year (having included the cost of the equipment and installation) and probably somewhere around $40,000 a year after that. A pretty good reason to encourage us, that they did not mention!
Susan and I talked about it for a few days and then a problem arose. A big snowfall hit the west coast. On Southern Vancouver Island , a lot of snow is a rare thing. The roads from my house in a small town 12 miles south of the nearest dialysis clinic in Nanaimo to the main highway into town were blocked for 2 days. I had to go on emergency water rationing and be very careful will my diet. Any longer and we would have had to make special arrangements to get to dialysis. Well, that was the event that convinced me to try the home project.
My Nephrologist, Dr. H. told me that home hemodialysis had been done in England, Japan the U.S., and Canada in the 1960s and 1970s The development of Peritoneal Dialysis in the '70s coincided with a decline in home hemodialysis, probably because the most suitable candidates were encouraged to use this new system. Now however, it is believed that long and frequent dialysis makes a big difference if the quality of life and probably the longevity of patients. My doctor was all for it. I have great regard for her and signed up.
Now I’m going to find out if they were right. Will I feel a lot better? Can I really eat and drink almost anything again and as much as I want?
The 6 weeks of scheduled training was reduced to 3½ because of our fast progress. I give Susan full credit. Due to my low vision, I am not the one giving me daily dialysis as would be usual. Susan will be setting up the machine, putting me on, dealing with any problems and taking me off. My job will be limited to cleaning the machine and talking her through the first few weeks until she has the confidence that comes with experience.
The nurses were surprised at how fast she caught on. Susan’s natural stubborn instinct also helped, as she would just work through a problem rather than asking for assistance and letting Bonnie (the trainer) do something for her.
Susan’s big concern, giving me the needles, didn’t stop her from going through with it when the time came. She says it wasn’t difficult to learn, but she was (and is) afraid to cause me pain. The fact that it doesn’t rate high on my pain scale doesn’t seem to make it easier for her.
I watched as best I could and listened carefully to all the training. The first 3 sessions – Monday, Wednesday and Friday, Bonnie put me on a 4 hour run and then started training. There were 2 other couples and 1 single man in the class.
To make the transition to home dialysis smooth, the second week, run time increased to 5 and then 6 hours. The third week, Bonnie had us go 4 times for 7 hours so that at the end of the training, I was getting the equivalent of 28 weekly hours of dialysis, up from 12 hours a week in the clinic.
For our final exam, Susan had to do everything from start to finish, and then undergo some “common problems” caused by Bonnie clamping lines, pulling out connectors, turning off the power and other interesting ways of finding out if we would be able to handle things on our own. Susan passed with flying colors! Then came a multiple choice exam, designed to find out if we were familiar enough with the documentation we were provided. Between the 2 of us, we were able to answer most of the questions without cracking a book and got the others without problems.
One of the other couples completed the training with us, the others will probably need at least another week.
Before we were accepted into the home hemodialysis program, a technician came to our house to make sure the site was suitable. She tested the water and the drainage, inspected the house electrical system and said that everything would be fine. Last week she came back and installed the equipment.
We have a Gambro hemodialysis machine, a reverse osmosis water purifier and a rack with 3 large water filters in a series. The whole thing fits in the corner of the bedroom next to the bed and rolls on wheels for easy cleaning. It is not the same unit as at the Nanaimo clinic, but I have seen them at the hospital in Victoria .
The month’s supplies are in the garage and don’t take up much space. According to Bonnie, most of the trash generated by the home dialysis can go into the recycling and the rest will be taken with the household garbage – no “Biohazard” sticker needed.
The first few runs will be done during the day when Susan and I are both wide awake and the nurses at the hospital are available to take our calls. By next week I should be sleeping through the night while my blood is being purified.