What would you change?

[kitkatz]

Given that we know what dialysis is and it is pretty much the same thing everywhere, what is one thing you would change if you could about dialysis?

Please think about it, no flip answers such as being on dialysis itself. We already know that answer.

[koako]

I would have to say that I wish there were warm blankets available at the clinics. You know how hospitals have warm blankets available for patients, well I wish they had some warm blankets available here too.

[cattlekid]

When I was on in-center dialysis, the main thing I wanted to change was the fact that all discussions with medical professionals (nephrologist, dietitian, social worker, etc) took place chairside during treatment.  I’m sorry, but I was not interested in airing my dirty laundry in front of the entire clinic.  Also, if I was having a bad treatment and wasn’t able to focus, why would you take that time to have a specific discussion with me about something important?  I can’t formulate a thought, much less have an intelligent conversation or retain any information you are trying to impart to me. 

I realize that not everyone is in the position to make additional visits to their dialysis center, but in my case, I was five minutes away so I would have gladly made an extra trip once a month or come in early once a month to have a productive conversation outside of my treatment time.

[noahvale]

*

[Rerun]

They use to have warm blankets 20 years ago and they served LUNCH!  Not any more.

I'd like to have a chair that worked.

I wish they were more flexible.  So, if I wanted to do something Thursday night I could come in Friday instead.  But, they just don't like to do that.

[cattlekid]

Excellent points.   I despised the staff at the clinic.   They made it abundantly clear that they were overworked and that the only time that I was going to get with them is the time during my treatment because they had too many other patients that were way worse off than me and that I should just fend for myself.  The clinic staff and their "my way or the highway" attitude were one of the many reasons that I chose to switch clinics and do home hemo.

I agree that they violated HIPPA on a daily basis.  Especially since their M.O. for dealing with the Spanish speaking patients was to talk louder.  Like anything short of having an interpreter was going to help get their point across.

Did you ever ask?   My nephs round weekly.  However, like yourself, I'm not comfortable with talking about all aspects of my treatment in an "open forum."  I said so and my primary neph is always amenable to either talking with me in a private room at the clinic before gong on the machine (rarely use this option since I need time to set up my machine, etc.) or come to her office. 

As for the social worker and dietitian...never have needed to have sensitive discussion with either.  However, if there was an occasion, I'd say lets talk in your office.

Patients have to speak up.  Plus, a good case could be made that the care team is violating patients HIPPA rights by going over their care in an open forum.

[iolaire]

I'd like a posted schedule of when each nephrologist would be in the clinic.  It seems sort of haphazard and I'm usually groggy and not really prepared to ask questions. 

[Pod99966]

I remember the chair side visits when I was in center. And I felt the same thing. I couldn't really focus on what they were saying and usually resorted to "yes, yes, ok" answers. On home hemo I go in for my once a month visit and I am awake and focus to answer and ask any question that I have. I may even mention that when  go in for my next appt.

[jeannea]

I agree about the chair side visits. It's bad that there's no privacy. The warm blankets would be nice but I did like the softer blanket I brought.

I wish someone would design a more comfortable chair. I don't know how exactly but more tushie comfort and better back and neck support. I also wish the lights didn't have to be so bright all the time.

[JW77]

Better food in units, and more money put into renal overall

[Emerson Burick]

Given that we know what dialysis is and it is pretty much the same thing everywhere, what is one thing you would change if you could about dialysis?

(1) Add a retry-before-shutting-down-and-sounding-an-alarm logic loop to the hemo machines. I must have spent an extra two hours a week and that chair because of the sensitive machines.
(2) Make the machine alarms less annoying. Flash lights but be silent about it. With 24 chairs the place was always clanging and beeping like the slot machine room of a downmarket casino. Drove me out of my mind.

[Michael Murphy]

 There was a time I would have said a chair that did not make my butt go numb at the three hour mark of a four hour and fifteen minute session. However a gel foam cushion solved that problem for me but my center is in a large medical center operated by a local hospital it would be nice to be able to order food from the cafeteria and have it delivered to our chairs.

[amanda100wilson]

I would love it if dialysis was not time related; that is, you could get it over in about thirty minutes but still get the same effect as longer dialysis.  The time that it takes is the hardest thing for me.  Or, the implantable kidney which will give 24/7 dialysis.  I know it is on its way but wouldn't it be nice if it was available right now.

[brandi1leigh]

I wish it was easier to travel. I have to save for years to buy plane tickets, hotel, etc. and all of those things have to be booked months in advance. I also over plan vacations, so months early I make dining reservations and get show tickets etc. But I can't book dialysis until 4 weeks out, and even then there's no guarantee of a chair or of a convenient time. So I spend a ton of money booking a vacation, and then just have to sit, wait and worry that the dialysis part will work out. My social worker is very sweet, but she thinks I'm crazy because I plan a vacation more than a month in advance. I'm sorry I travel with other people who have to a arrange to get off work. I'm not asking to cut my time, I just want some reassurance that I'll have a spot...

[kitkatz]

The travel arrangements make me nuts too.  You plan and plan and dialysis can screw it all up!

I would change my chair.  More comfy chair. One to sink into for hours on end.

[cattlekid]

I had a whole vacation shot to crap because I asked eight weeks ahead of time for a dialysis shift on a specific day and time.   I didn't get a confirmation until three days before I left and the day and time was not the one that I desired.   It made the whole vacation a waste of time and money.  I vowed at that point that I would never do a long weekend vacation again while I was on dialysis in-center because of the lack of control over the time and date that I could dialyze as a travel patient.

[komomai]

Nothing I love my hemodialysis, as mentioned before I'm using the Japanese hospital and they have gone out of their way to accommodate my schedule.  Going from 3 times a week to 6 times a week and now doing it 5 times a week they have no problems.  Here in Japan they had no chairs just used beds, I asked why not have a dialysis chair, my doctor ordered one for me I use it everyday.  I asked for home hemodialysis and I'm now going to be the first one on Okinawa to do it.  My doctors are at the hospital everyday and always look at my records and ask how I'm doing, since I'm the only American there speaking english I don't mind having a conversation at the chair.  Also I get warm futons (blanket).

On the other hand on a vacation back in Hawaii I used a clinic and it was interesting.  There were no doctors on site, only on call.  There were only 2 nurses that could do the hookups, in Japan all the nurses are able to do the hookups.  I watched them pull out a patient on a stretcher with no doctors on site.  Spooky.

[JW77]

The size of dialysis machines.  Seriosly, we've got 1 truely portable machine the size of a students beer fridge, 1 belt worn machine that I think is the in stage 2 prototype testing and the only competition will still probably require an RO.

Its much smaller than the NXstage (I've seen it demonstrated)  http://www.quantafs.com/ and is supposed to be on the market in the next 18 months.

We've got 3D printing, nano design, and some SERIOUSLY high level computing on a miniature scale.

Maybe we should lock Tim Cook and James Dyson into a room until they come up with a solutions:D

My second thing I'd love to change.. Seriously, its time for the same level of awareness as Heart, HIV, Cancer, Diabetes..  Not just in the UK, US and Europe.. Globally! 

[needlephobic]

I would like to have a power dialysis chair so I could move around center or go outside  when it gets to cold for me or if you are in a center where they don't pay attention to you just drive the chair up to them and hit them hard 

[kristina]

I would like to come across a medical invention, which could make the use of dialysis unnecessary,
so that people like me don’t have to live in constant fear of dialysis any longer...

If there is anything I would like to change, is to have many more possibilities for kidney-patients to avoid dialysis for as long as possible.
Not every ESRF-patient is as lucky as I was so far to come across a few doctors who gave me the right medical (vegetarian diet) advice
for me how to avoid dialysis for as long as possible.

I was first told about dialysis as my future-treatment in 1971, when my kidneys first failed
and the thought of dialysis has frightened me ever since...
Whilst I was still in hospital in 1971, a Professor told me that a vegetarian diet
would help my kidneys to function naturally a little bit longer
and I have been a vegetarian ever since and my kidneys still do function...
I was later told by another medical doctor, that I should avoid alcohol and late nights as well (adding to my vegetarian diet)
to “keep my kidneys functioning a little longer” and I have avoided alcohol ever since... and my kidneys have thanked me and keep on functioning...
...Another medical doctor told me that drinking a regular cup of camomile tea (to calm my body) and another cup of peppermint tea
could assist my kidney function and I have been drinking these two teas regularly ever since...

I do acknowledge, that there are many nephrological disorders and diseases where no diet and no life style can alter anything
to stop the deterioration of the kidney function,
but there are still quite a few kidney diseases like “my” chronic proliferative glomerulonephritis,
where a vegetarian diet and a certain life-style are assisting the patient a long time to avoid dialysis for as long as possible,
which in my case has been for over 43 years so far...

[Sugarlump]

Firstly, the time it takes. A machine that could do it in an hour or so and not make you crash would be great!
Secondly, serving food on dialysis. My session is 7.30am to12 ish so a cooked breakfast, toast and real coffee would be wonderful. I might even look forward to going