For starters, I was thrilled that I was invited to sit in on this presentation. It is further proof (for my money) that healthcare is really changing. That the patient perspective is truly valued. Kudos to Kingston General Hospital for putting their money where their mouth is. I sat down, front and centre, and participated. I asked questions. I learned a lot.
So . . . this NxStage company is pretty amazing. The technology takes home dialysis to another level.
The machines were made specifically for home patient use.
The set-up is less than a half hour – perhaps 20 minutes.
The machine doesn’t require all of the infrastructure – of plumbing and electric – that my current machine requires. Allowing for a lot of flexibility.
The NxStage process was patterned after Peritoneal Dialysis – as far as ease of operation and simplicity.
I have to say, I have been learning about this company and their machines for years through groups I’m on online and from their website and YouTube videos. I am so excited that these machines are in Canada. The technology has the potential to improve the lives of people living with kidney failure pretty dramatically.
So here I am in this meeting – feeling like I’m in a dream. I maintained my composure as not to squeal or giggle . . . although I was so excited that I could have!
So what does this machine mean to me?
This machine simplifies the lives of home hemodialysis patients. (On the on-line discussion boards I hear people refer to their machines as “Fisher Price”. )
Set-up, use, tear-down and clean up are significantly less time and less complicated processes. For me this would translate into more time in my life and less time spent on dialysis. As explained by the NxStage representative, I could have between 2 to 3 hours back for “non-dialysis related life per week.”
A more simple system means peace of mind for me. As it stands I am always anxious about dialysis. Remembering the months of training that I learned. Thinking about trouble-shooting. Keeping in mind the complicated machine and being ever mindful of what can go wrong. It is stressful.
With the system not needing special electrical and plumbing work patients will have more flexibility to bring hemodialysis home. This could mean home dialysis for a person who otherwise could not do home dialysis because of water issues, etc. This means not being restricted to always doing dialysis in one dedicated spot in your house.
This also means easier travel with dialysis. The system can be adapted to be portable. With the travel option dialysis patients can have a simplified travel protocol. As opposed to the numerous hoops we have to jump through now to travel – coordinating with other dialysis units.
Why I am sharing info about this company and why am I so excited???
Life with a chronic illness is hard. Anything that makes this life easier and better is GOOD.
Anything that improves the quality of life for patients is GOOD.
NxStage, like anything isn’t perfect and certainly isn’t for everyone but it represents another dialysis modality option.
Not just an “up-grade” on what already exists but a thoughtful, from-the-ground-up reconceptualization of how dialysis could be.
That gives me a lot of hope. For one, it shows that people really care about the lives of people doing dialysis. Cares enough to think very thoughtfully about what we go through, what works for us, and how our lives can be improved.
That blows my mind.
Some really smart people put their heads together to come up with something that can improve my life – and the lives of other patients. I want to hug these smart people and say “thanks”. I really do.
This innovation also shows that science is working on improving the lives of people living with this disease. Improving our lives is on the agenda and progress is being made. It makes me feel so hopeful.
BTW, I don’t care what the higher agenda is in this situation. If this machine has moved forward because it costs less (or this or that political reason), frankly. All I care about is the lives that will be improved. Qualities of life that will be better than they are now.
This meeting gives me hope that the next time I need to do dialysis, after my next transplant fails (which it eventually will), there will be better options available for me. Options that will make me want to stick around to try dialysis for the third time.
That means a lot to me. So I know I’m not the only one who feels like this.