advice for me about home hemo?

[gothiclovemonkey]

ive been thinking about doing Home Hemo. (PD has been tried twice, and not an option)
Does anyone have any advice for me, opinions, anything?
I want to know as much about it as i can, especially from the patients view.
Thank you

[obsidianom]

There is such a differance doing NxStage 5 times per week at home compared to 3 times per week in center. You get more dialysis and FEEL a LOT better. My wife is a different person on it compared to original in center. It is less harsh , gentler dialysis without the numerous days off that allow fluid to build up. It allows you to be a little less stressed by water intake as you get more days to take it off slower. It is far more comfortable also. My wife actually feels better during and after each treatment.
Nxstage doesnt take  up much room and the supplies dont either.  It really is a better way to go. You have control over what you do and the way you do it.
If you have any specific questions , just ask. We have been doing it a year and a half. WE would never go back to in center.

[cassandra]

If you do Pureflow the stock is about half of PD, System One is about the same. There is no comparison to how you feel with in-centre, cos you feel way better. Diet, drink is as great as on PD.
I learned a lot about setup, the needed space, buttonholing etc. from YouTube

Love, Cas

[Simon Dog]

Don't constrain your considerations to NxStage 5/6 days or 3x/week conventional if doing home hemo.   An option that is not always offered is conventional every other day.   This can make for a more liveable lifestyle that gives you more than one free day a week, with less beating on the fistula.   There is debate as to the qualify of outcome of NxStage daily vs every other day conventional, but it's pretty much universally accepted that 3x/week sucks.  The NxStage daily treatments are not the equivalent of conventional treatments, though total dialysis over the course of a week is.

Nocturnal is an even better option for quality of result.

NxStage is a wonderful machine and great technology, however, don't let their very effective marketing prevent you from investigating the other options as well.    One thing about the Baby K - it is more involved setup that NxStage since you have to do the line setup manually (the NxStage uses a cartridge).

My doc has about a 50/50 split of patients on the NxStage and BabyK, however, I was the first one who requested every other day Baby K.   There was some concern as to his ability to get it approved (Fresenius), but that turned out not to be a problem.   I am now on a 4x/week schedule - three days for 4 hours and one for 3, so that I can always have certain days of the week off due to my work schedule.

Always leave a little bit of needle showing when canulating to avoid "hubbing the fistula" (leaving it crater like with more difficult scabs).  I got this bit if info from one of the Stuart Mott presentations on canulation.

Waiting for the Fresenius NxStage killer.   If it is all rumor has it to be, I would be wary of holding NxStage stock when it comes out.

[obsidianom]

Don't constrain your considerations to NxStage 5/6 days or 3x/week conventional if doing home hemo.   An option that is not always offered is conventional every other day.   This can make for a more liveable lifestyle that gives you more than one free day a week, with less beating on the fistula.   There is debate as to the qualify of outcome of NxStage daily vs every other day conventional, but it's pretty much universally accepted that 3x/week sucks.  The NxStage daily treatments are not the equivalent of conventional treatments, though total dialysis over the course of a week is.

Nocturnal is an even better option for quality of result.

NxStage is a wonderful machine and great technology, however, don't let their very effective marketing prevent you from investigating the other options as well.    One thing about the Baby K - it is more involved setup that NxStage since you have to do the line setup manually (the NxStage uses a cartridge).

My doc has about a 50/50 split of patients on the NxStage and BabyK, however, I was the first one who requested every other day Baby K.   There was some concern as to his ability to get it approved (Fresenius), but that turned out not to be a problem.   I am now on a 4x/week schedule - three days for 4 hours and one for 3, so that I can always have certain days of the week off due to my work schedule.

Always leave a little bit of needle showing when canulating to avoid "hubbing the fistula" (leaving it crater like with more difficult scabs).  I got this bit if info from one of the Stuart Mott presentations on canulation.

Waiting for the Fresenius NxStage killer.   If it is all rumor has it to be, I would be wary of holding NxStage stock when it comes out.

There are other big advantages to Nxstage. It is portable . It uses FAR less water then the other types, so if you have a well like we do it puts no strain on it. It is easier and quicker to set up and break down after. Also you have a dedicated 24 hour phone line to the techs who can talk you through any issue immediatly. There is no waiting if you need immediate help.
I am not a shareholder in Nxstage, just a doctor who likes the system and uses it.
You can do every other day oin Nxstage. There are many ways to use it. It can be used as little as 4 times per week up to 6 or 7 times per week. The new faster dialysate speeds allow more flexibility.
My wifes numbers are now at the point that she has the BUN of a real kidney after treatment. She was at 15 the other day post treatment , which is like a healthy kidney.   So we have seen how effective it can be with the correct settings .
I agree any home system is better than 3 days per week standard in center. I just like the ease of use and less harsh dialysis on Nxstage.

[Simon Dog]

There are other big advantages to Nxstage.

You forgot to mention "no need for a dedicated 20A circuit".

[nursey66]

My Hubby decided to stay with the in center treatments. He checked out the Next Stage, his Neph was all for it. But ,he decided he didn't want all the time needed to set up and tear down,  problems that can occur with alarms, etc, [ he gets frustrated quickly when the computor doesn't work perfectly ] , cleanning, and all the supplies sitting around the house as a constant reminder of dialysis. Every one is different, and he likes visiting with the nurses & other patients. Our center is only a 5 min. drive away so very close to our house. I know Next Stage is better ,you have that control, but for now, it seems he doesn't want to deal with it. He likes having the days off totally away from dialysis, even chooses to go late in the afternoon for D because his mornings are also free. He generally goes to bed soon after its over, gets done around 7PM. Just anouther point of view and experience from a wife.By the way, I am a nurse and did offer to help him with the Next Stage stuff. Maybe that's why he chooses not to use it  

[amanda100wilson]

 There are advantages of both in-unit and home, and some if them have been described by others.  However, I personally feel that the downside of doing home is far outweighed by the benefits.  I love the fact that I am dialyzing at home in comfort and warmth.  I have my iPad, laptop and smart tv, and my chair is super comfortable. I choose when to do it.  if I am not having a comfortable treatment, not feeling well etc., I can easily stop easy as I know that tomorrow I will be dialyzing again.  You are generally required to have a care partner, but I am a strong proponent for doing as much for yourself as you can.  It is my issue and therefore mine to deal with.  I do everything myself and that is the way I like it, although I know others have different views on this.  For us, it causes a lot more stress and anxiety, and I have total control about when I do it and not rely on a time that is convenient for my husband. (I know that you are recently engaged and It could put pressure on the relationship).  It is empowering being able to take charge of your treatments.  Good luck and feel free to PM or post if you have further questions.

 

[Hemodoc]

NxStage, Baby K, FMC PAK, Baxter Vivia?

Currently, the only two options are NxStage and the FMC Baby K.  Let's start there for now.

NxStage when set up properly hardly ever alarms. Yes, it is time consuming but most believe that NxStage is 90% less work. You need no Reverse Osmosis system, no special plumbing, no electrical system upgrades. NxStage utilizes ultrapure dialysate which means it has lower bacterial content that conventional systems such as used by the Baby K. That alone grants reduced inflammation and probably reduced mortality benefits.

The only advantage of the Baby K is higher dosage of dialysate than the NxStage System One. However, NxStage now has available an upgraded version which gives higher dialysis dosages. The current system has a maximum dialysate flow rate of 12 L/hr, the new System One will be able to handle 18 L/hr or 300 ml/min dialysis flow rates which places NxStage at the early plateau of dialysate clearances. Looking at the dialysate solute clearances, that will approximate conventional dialysate clearances which reduces the Baby K solute clearance advantage. In addition, the length of dialysis treatments may be the most important aspect given the superior survival in Japanese patients who utilize low flow but longer duration sessions than what is used in America.

http://www.hemodoc.com/2011/04/understanding-the-nxstage-filtration-fraction.html

If you look on page 20 of the following pdf file from FMC, you can see a picture of what the PAK looks like.

(http://www.fmc-ag.com/files/120109_JPMorgan_SanFrancisco_final.pdf)

It will utilize sorbent technology to re-cleanse the same water cyclical throughout the treatment starting with about 10 L of tap water. It is not yet FDA approved. It- achieve "near ultra-pure" dialysate as seen in the second link by Dr. Agar.  Dr. Agar summarizes the other options currently in development quite well on his website. There are other systems in development not yet disclosed by a variety of companies in the US and internationally that will come to light in the next few years. Technology is our best hope of obtaining universal optimal dialysis options.

http://www.renalsolutionsinc.com/howitworks.html

http://www.nocturnaldialysis.org/technology_whats_coming.htm

The NxStage is not at all lacking in it's ability to compete in the home hemodialysis market and I suspect, but don't know with certainty that they will also have second and third generation machines in development. Clearly, the ultra-pure dialysate, the remarkable reliability of their system and their substantial customer services now in place will have to be duplicated and competed against by any new machine coming into the US marketplace.

Here is another overview from a lecture by Dr. Agar recently. It compares and contrasts the pros and cons of the NxStage, PAK and Baxter systems. Once again, for now, the only FDA approved options are NxStage and the Baby K.

http://www.health.qld.gov.au/healthpact/docs/briefs/WP014.pdf

[gothiclovemonkey]

My clinic is a Davita.

Thank you guys!

What about the seeing drs and such, is that like it is for pd? you go in once a month or so and do blood work and see dr, etc?

How hard is it to pull ur own needles?

Do you absolutely have to have a care partner, or is it just a recommendation? if you do, can they just be there, not do anything unless there is an emergency?

How long is the training?? How difficult was it to learn? (if you have done pd , you can compare it, ive done that.)

[obsidianom]

My clinic is a Davita.

Thank you guys!

What about the seeing drs and such, is that like it is for pd? you go in once a month or so and do blood work and see dr, etc?

How hard is it to pull ur own needles?

Do you absolutely have to have a care partner, or is it just a recommendation? if you do, can they just be there, not do anything unless there is an emergency?

How long is the training?? How difficult was it to learn? (if you have done pd , you can compare it, ive done that.)

You go once per month to clinic . You draw your own labs as you have access each time when you cannulate. Its very easy.
You need a care partner but just to be in the building available for an emergency. You can do it all yourself if you choose. Many people do.
Training is a few weeks. It is based on how fast you learn. It is not complicated on Nxstage. You just learn to set up and run the machine. The biggest part is the cannulating . The machine basically runs itself once you get it set up. Clean up after is only 5 minutes usually.
Read Stuart Motts stuff on cannulation . He has videos on line . You can prepare that way. Once you do it a few times you will see its  fairly easy .
The best part is how much better you should feel on more frequent dialysis. Its a big improvement and dialyisis is more comfortable each time.
Ask anything you want. We are here to help.

[noahvale]

^

[kit78]

I really wish I could do this at home, but have been told you have to have someone there at all times.  By dong at home, I could get back to work!  Any suggestions as to how to find a person to be around?

[obsidianom]

I really wish I could do this at home, but have been told you have to have someone there at all times.  By dong at home, I could get back to work!  Any suggestions as to how to find a person to be around?

I have been told there are a few people who dialyze alone. They have an emergency communicator around their necks and keep the door unlocked for emergency personnel. Its not ideal but it can be done if your clinic will allow it. If you can master all the skills to do it with Nxstage you may be able to do it. Talk to your doctor and clinic.

[cattlekid]

I had a care partner, at least according to my clinic I did.  My husband came to three of my training classes, just enough to know what to do if the excrement hit the oscillating device.  He started out sitting with me the entire time, mostly just for moral support.  Then he graduated to being in the house, but not necessarily in the same room.  Then after I got really comfortable, there were times that I would do my treatment entirely by myself.  But by that point, it was 18 months of me doing my entire treatments by myself, buttonholes were no problem, my blood pressure was entirely stable and I was taking off less than 1 liter of fluid per treatment, sometimes nothing other than rinseback. 

By no means am I advocating a nominal care partner for everyone, but there are those of us who have done it.  And in other countries, they don't train care partners at all.  The dialyzor is expected to do everything for his/herself.

[amanda100wilson]

 I agree with what Obsidionom and Cattlekid have said.  My husband is in the house, that is about it.  Any emergencies that arrive need to be dealt with straightaway and I do this myself.  I never call on him.  Good idea to have care partner initially so you can build your independence over time.  Definately ask your clinic, if there is a way around the care partner requirement.  Next treatment, why not ask if you can start cannulating yourself as this would be a great first step.  From reading your posts, I think that you would love the flexibility of home hemo.  If we can be of help further, please do no hesitate to ask.  I am such a strong proponent of home hemo, and I feel like I have done a hood job, if I have helped get one more person out of clinic and into their home.  By the way, the Pureflow unit fir NxStage, which is the most space-saving way of doing it, can just hook up to your sink or on a faucet.  You clinic can arrange to get this put in. 

[willowtreewren]

Just some added thoughts.

I was Carl's care partner. While the supplies do take up some space, it helps to be organized. And to that point, keeping up with ordering them also benefits from a certain amount of organization.

I cannot stress enough how wonderful it was to be able to take the NxStage on the road. We visited with our daughter 800 miles away at least 4 times a year AND went on frequent camping trips (including a week in Florida!).

Carl was able to work 10 hours a day and felt GREAT while doing NxStage. His fluid and diet restrictions were minimal. During the summer, I would stick around for set up, but then head for the pool in our backyard. I took a portable phone with me in case Carl needed something. He did once. We forgot to disconnect the drain line from the saline bag and it started to leak on him. Whoops! An easy fix, but I did drip all over the carpet!

 

Aleta