The "A Conference for Home Dialysis Users", edition.

Good Tuesday morning!  A conference for home dialysis patients. How specific is that?  Hey. We all belong to subsets of subsets!  But it's not like I know or even encounter people on home dialysis on a daily basis. Let me put this in perspective. It's true that when Brian and I go to the dialysis center we see other patients and nurses. I decided to ask about it. The majority of people on home hemodialysis are people who do the peritoneal method..  You know the tube in the stomach modality. And that's fine. Some people would rather not use needles, some people don't have a care partner..or any other number reasons. Anyway. I asked how many home hemodialysis (needle users) nurses are there in the area. There are three. Three nurses. Three nurses for the entirety of southern Nevada (!) Whoa!!!  Well. How many home hemodialysis patients are there in southern Nevada?  25. Whoa!!  Only 25 of us. In southern Nevada. Nevada is a large state. My nurses said that they periodically have to travel 4 hours to visit patients. Whoa!!!  So I've put this in perspective for you. 

People doing home hemodialysis are a clear minority. And we don't have to tell you it's a good modality. Studies have shown that it's the best modality for dialysis. Best survival rates. And there are other benefits. So..even when I bitch and moan wail and gnash my teeth, that's just a function of living with failed kidneys. I decided that what I wanted the best treatment available to me. So. Meeting others who chose home hemodialysis was a great experience. Meeting meeting people with a shared experience. And of course even though we are all on home hemodialysis, our  shared experiences are also different.

So. We arrive back at Circus Circus around 8 AM Saturday. Program starts at 8:30. Topics included nocturnal dialysis, an iPad app to collect data during treatment...we currently use flow sheets to collect data.. Such as pre and post weight, temperature, sitting and standing blood pressures, how much fluid to remove, arterial and venous readings during treatment...and even some more info. Another session included additional items needed for nocturnal dialysis, such as a heparin pump...to decrease blood clotting while asleep and a sensor to detect blood leaks. And a discussion on travel. 

Lunch was provided. And during lunch several awards were given for topics specific to home hemodialysis. The keynote speaker was Dr. Shuvo Roy, from University of California San Fransisco, whom I mentioned yesterday. He introduced himself to me as a scientist. I recalled thinking no one ever introduced themselves to me as a scientist. Lol. But he was. He and his team are developing an implanting artificial kidney. And that's what he talked about.  He noted that technology had allowed miniaturation of medical devices. Think pacemakers.  But that the field of nephrology seemed to be stuck in the dark ages. There is no reason why dialysis machines are still looking pretty much like they did 30 years ago. He explained the biology of how the implantable kidneys would work. And before you get too excited, it's still a ways away. But it was exciting to hear about!  

We broke after lunch. One of the sponsor companies, NxStage, has arranged several activities for conference attendees such as tickets for Blue Man Group, Penn and Teller or a night tour on the Big Bus. And of course, most people would have had to do treatment prior to going to the shows that evening. I, on the other had, had to go assist with some tasks for the showcase event on Sunday. To say I was tired by the time I got home was an understatement. Anyway. 

That's it for today. I know I haven't mentioned the people I met and that was the best part. I'll go into that tomorrow..I think I'll be up to writing tomorrow. But just know that I really enjoyed the conference and learning so much. Take care and enjoy your day!  

https://pharm.ucsf.edu/kidney