Your input please!

Discussions for Patients, Family, and Friends HD For Patients
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I’m the Marketing Director for Home Dialysis Plus (HD+), a company that is developing a new compact home hemo system. I’ve been following posts here since I was first introduced to Dori late last year - what a fabulous resource this place is! I’ve contacted a couple of HDC folks directly, but wanted to make an open request to the community… would any of you be interested in talking directly with me about your home treatment routine and the types of things that YOU would like to see in a home system?

Our hope is to move beyond basic usability and create an ultra patient-friendly unit. One of my roles with the company is to learn what “patient-friendly” TRULY means. Instead of moving forward with what we THINK it means, I’m pursuing input from people that have undeniable firsthand knowledge. I believe you and your care helpers are THE voice to listen to when it comes to creating a system that patients will choose to use.

If you have an opinion and a willingness to share some of your personal health history, please email me & I will arrange to call at a time that is most convenient for you.

Thanks! And thanks for letting me jump in to ask these questions. As we begin to make design decisions on the patient interface and usability of the HD+ system, I hope to offer as much of your input as possible.

Brenda Edin
brenda@homedialysis.com

= = =

Brenda Edin, Marketing Director
Home Dialysis Plus, Ltd.
www.homedialysisplus.com

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A couple of people have asked via PM so I’ll post answers here for everyone…

Yes! This is the same Home Dialysis Plus that Jim Curtis has referred to in the past. (He is as active as ever with HD+!) I’m happy to personally share details about HD+, but other than to tell you were hoping to make the home system as user-friendly as possibly (which is why I’m asking for input!), I am intentionally avoiding promotion of the company on the boards. Check out the website, then email or PM if you have company questions!

Yes! We will have to do clinical trials. I do not have detailed information to share on that yet, but if you are interested and would like to be kept up to date, please send me your email and I will let you know when we reach that point.

Yes! Caregiver input is absolutely welcome. Please do share! Actually, I’d ove to hear a group discussion about a “dream machine”. If a home system could have any and all features imaginable, what would they be?

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[quote=homedialysisplus;13325]Yes! Caregiver input is absolutely welcome. Please do share! Actually, I’d ove to hear a group discussion about a “dream machine”. If a home system could have any and all features imaginable, what would they be?[/quote]The “dream system” would be an implantable device that has an external battery pack and filter and the waste line connects to the bladder. It would use a totally different filtering process and would not require dialysate (no, I don’t have a clue how to do this). It would sense when fluid needed to be removed and do so automatically. It would be adjustable so if it is pulling off too much or too little, you could change the settings. Once a day, you would hook up to a saline line to flush the blood back from the external filter and it would be disposed of and replaced.

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well assuming we have to stick with the “out of body” machine experience, I wish I had a unit that self-corrected when the alarm went off. I’d like to use the machine without a helper and I’d like something that DOESN"T require the bag after bag after bag thing OR an extra piece of equipment to make dialysis. (Why can’t someone make a system that just hooks to the freaking faucet!) I’d also like to not have to stick myself every treatment, but compared to everything else, it’s becoming less of a big deal.

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I also really like the idea of a machine that could be used 100% safely without a partner.

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I would also like for the machine to have a mechanism by which it figures out how much extra fluid is there in the blood. Though allow me to set the amount of fluid to be removed.

Also, an in-built BP monitor which beeps if the BP goes lower than a preset limit.

The start up time and close up time should not be more than 5 minutes.

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It should…

  • Have smooth transition from current tech
  • Make use of fistula/buttonholes
  • Weigh very little
  • Use very little resources or none
  • should not intefere while sleeping
  • Should be automated
  • Should have bluetooth/wireless
  • Should look SexxEeee.

…hehehe

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Maybe we could have Apple design them so instead of earbuds, the new accessory could be blood lines - bwahhahaha!

Seriously though, I’d like to be able to do the treatment safely myself. I also like the suggestion of using minimal resources. Pretty hard to be eco-friendly, water conserving type and do home hemo. You should have seen the look on my face when the first water bill arrived!

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[quote=Unregistered;13336]Maybe we could have Apple design them so instead of earbuds, the new accessory could be blood lines - bwahhahaha!

Seriously though, I’d like to be able to do the treatment safely myself. I also like the suggestion of using minimal resources. Pretty hard to be eco-friendly, water conserving type and do home hemo. You should have seen the look on my face when the first water bill arrived![/quote]

Hey not a bad idea, Apple’s products are designed with style…why can’t home dialysis machines, especially those for portable use be designed that way? Isn’t this their design? Kinda looks like a bread maker to me…or maybe a humidifier…other than that looks slim on the edges and looks quite feather weight to carry around…kinda like a lunch box.

[LEFT]Now this seems impressive, look at the size of their dialyzer!

[CENTER]

[/LEFT]
[/CENTER]

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Flowers for Algernon is a science fiction story (it won a Hugo in 1960), I remember reading it, having to read it in school. It tells the story of Charlie who is mentally retarded. Charlie takes part in an experiment to enhance his intelligence. His progress parallels that of Algernon, a laboratory mouse who had been “enhanced” earlier.

In the end the treatment rapidly reverses and Charlie returns to his pretreatment state. In school the book offered many themes one could explore which is why it was taught but I find myself thinking of the story often these days.

From 1990 to 2001 I dialyzed incenter where my hemoglobin was maintained between 11 and 13, mostly about 12. I functioned under the fog of anemia - worked, traveled, volunteered - but I often had as the French would say l’esprit de l’escalier, staircase wit. Meaning thoughts would come too late, after the conversation moved on, I had the sense of being slow to understand new information and would have to think about things for a while before I was able to really process the information.

Then I used the Aksys PHD for four+ years, from 8/02 - 1/07. With the PHD my hemoglobin increased, without the use of EPO, to 13, 14, as high as 14.7. Like Charlie my life changed. In the story Charlie becomes a super genus; Charlie had higher highs and lower lows, in my case a normal hemoglobin did not make me a a super genius. But I was quicker witted. I had fewer moments of staircase wit, more often wit in the moment.

Alas, the PHD is no more and like Charlie’s story I now feel I am past the peak and returning to the anemic fog from whence I came. The memory of energy and joie de vivre is all I have as I readjust to my denser state.

Brenda you ask what would make for a “patient friendly” machine. I care not one bit about what it looks like, what color it is, how big or how small it is, whether it is bolted to the ground or as light as a feather. I want a high natural hemoglobin. I want each minute on the machine to give as much dialysis as can be given in that unit of time. I want it to be bio-compatible. I want a machine that results in blood cell longevity.

Blood cell longevity can only be inferred from current modalities which is a shame. However, that is my measure of a machine - give me a high natural hemoglobin and your machine will be a winner.

“please if you get a chanse put some flowrs on the PHD’s grave in the bak yard…”.

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My husband has been a Kidney patient for almost 8 years. We started out on PD and graduated to Hemo. He started in the centers (ugh) and we were allowed to train and do home dialysis. We have seen a lot of change, mostly for the better. One thing we would like is a machine that makes it easy to travel. We love to camp and if a machine would allow us to do this, we would be happy campers.
I agree with others that the sound needs to be dampened, especially for those who try to do nocturnal dialysis. Making the machine less complicated so others could be trained to help the kidney patient and give caretakers a break once in a while.

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[quote=Berkeley_Barb;13353]My husband has been a Kidney patient for almost 8 years. We started out on PD and graduated to Hemo. He started in the centers (ugh) and we were allowed to train and do home dialysis. We have seen a lot of change, mostly for the better. One thing we would like is a machine that makes it easy to travel. We love to camp and if a machine would allow us to do this, we would be happy campers.
I agree with others that the sound needs to be dampened, especially for those who try to do nocturnal dialysis. Making the machine less complicated so others could be trained to help the kidney patient and give caretakers a break once in a while.[/quote]

Oh yes, definately! Let it be easier for us home patients to handle it all by ourselves without needing a partner/caretaker…when I say easier, I mean even patients with bad carpal-tunnel like I have or even patients who cannot lift heavy items/objects…

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Bill writes: "Then I used the Aksys PHD for four+ years, from 8/02 - 1/07. With the PHD my hemoglobin increased, without the use of EPO, to 13, 14, as high as 14.7. Like Charlie my life changed. In the story Charlie becomes a super genus; Charlie had higher highs and lower lows, in my case a normal hemoglobin did not make me a a super genius. But I was quicker witted. I had fewer moments of staircase wit, more often wit in the moment.

Alas, the PHD is no more and like Charlie’s story I now feel I am past the peak and returning to the anemic fog from whence I came. The memory of energy and joie de vivre is all I have as I readjust to my denser state.

Brenda you ask what would make for a “patient friendly” machine. I care not one bit about what it looks like, what color it is, how big or how small it is, whether it is bolted to the ground or as light as a feather. I want a high natural hemoglobin. I want each minute on the machine to give as much dialysis as can be given in that unit of time. I want it to be bio-compatible. I want a machine that results in blood cell longevity.

Blood cell longevity can only be inferred from current modalities which is a shame. However, that is my measure of a machine - give me a high natural hemoglobin and your machine will be a winner."

Are you now on NxStage and feeling less well then when on AKSYS as far as not getting a high natural hgb? It must be terrible to feel like your health has diminished with the loss of AKSYS. What is about AKYSYS that gave you a high hgb?I seem to feel the same whether my hgb is up or down. I’m epo-free at present and don’t feel any different. But I’ve read where others say raised hgb makes them feel so much better. The reason I have a high hgb is because of good returns-I’ve learned how to get all the blood back.

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Thanks so much for sharing, everyone! This kind insight is invaluable to our team.

FYI - it appears I have been having difficulty with my email this past week. If you’ve been unable to get in touch with me or you haven’t heard a reply to your message, please do try again. I am usually very quick to respond to messages.

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[quote=homedialysisplus;13378]Thanks so much for sharing, everyone! This kind insight is invaluable to our team.

FYI - it appears I have been having difficulty with my email this past week. If you’ve been unable to get in touch with me or you haven’t heard a reply to your message, please do try again. I am usually very quick to respond to messages.[/quote]

You can catch me sometime on Yahoo, AIM, or MSN …

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Ahh to pee again. Erich