COBE C3 Dialysis Machine

Discussions for Patients, Family, and Friends HD For Patients
#1

I was just talking with a technician about home hemo at the center where my husband goes.
He told me he would be using the same machine at home that he uses at the center which is the Cobe C3

Does anyone have any experience with or information about this machine such as ease of use ETC. We are both very new to this, just about two months into dialysis & wanting to go to home dialysis ASAP.

We are really interested in the NxStage, which they don’t use, but are certainly open to other options & opinions.

Jane

#2
#3

Gus, could you elaborate a little more on “cumbersome to maintain”
I don’t know what you mean, way too new at this I guess.

I am now looking for another center that has NxStage.
The tech I spoke to, at our center, never heard of the NxStage so I don’t suppose one will be available.

I sent him a link to HDC, hope he signs on as he could be very helpful since he is experienced in dialysis.

#4

Hi McJane. Have you looked in the “Find a Center” database (http://www.homedialysis.org/v1/centers/search.php) to see if there are any daily home hemo programs near you? Those will use either the Aksys PHD, the NxStage System One, or both.

You can also look on our coverage maps: http://www.homedialysis.org/v1/types/maps.shtml to see what might be closest, even if it’s the next state over…

#5
#6

Hi Gus,
There are several centers near us & tomorrow I am going to call them all. One HAS to have the NxStage. It was your posts & pictures that sold me. I cannot handle the Cobe, I just know it & here is way.

My husband, the patient, absolutely will not get involved in learning anything about dialysis other than say he wants home dialysis. I have asked him many, many times to read the threads & posts on HDS & all he says is…later & later has never come, never will. I spend hours every day here & probably even pester posters with dumb questions, but this is the only place there is to go, I would be helpless without it. When you call the center you don’t get very much info they are very nice, but what you do get is often not very much help.
For instance I had no idea we could make choices, never told that.

He will even hold up some food & ask me if he can “have this” so will not even read the Dialysis Diet booklet he was given. His blood test read he was low on protein other than that it was good, but he has had only one test.
I asked him to bring home a copy, still waiting. I trust myself more than anyone to keep a watch on things.

I have tried to explain that he has to learn & understand what he needs to know & do to be able to do HD & make some decisions for himself, take some control. He’s new at this, two months, and so am I, but I am not the one who is sick & I simply cannot understand anyone who would not like to learn all he can about his disease. I’ve learned so much since finding HDC & I can’t stay away because there’s a lot I don’t know & it’s not all that easy to understand. I’ll keep reading, learning. & trying & if & when he ever gets on HD I’m sure a lot of what I am reading will start to come together & make sense.

I want him to understand that HD is NOT like in hospital or in center where you just lay back & are completely taken care of. I want him know that I am not going to do this for him, but I’ll always be there to help.
Today at noon I asked him to start doing some reading at HDC & he said he would soon as he got dressed & I did’t see again him until 6:00 & then I got the same old “I’ll do it tomorrow” Well, that ain’t gonna to happen because “tomorrow” he goes to the center.

Well, anyway Gus, after boring you & crying on your shoulder with all my frustrations just to tell you that I could not deal with Cobe maybe you will understand why, it’s just too much machine for me to handle.
I want the best for my husband & the easiest for me because I’m afraid that’s how it’s probably going to end up.

Thanks so much for your help Gus, really greatly appreciated.

Dori,

thanks for those links there are eight centers all within 10 to 15 miles from us & one of them just has to have the NxStage, I hope. If not there is one that has it, downtown Philadelphia 25 miles, not far, but I hate the thought of having to go into the city.

#7

You know, anyone who wants to do home hemo will have to learn all about dialysis, how to respond to various problems, how to handle emergencies, no matter what machine is used. You can save on treatment setup time with machines like Aksys and NxStage, but it’s still not like plugging in a kettle. Situations WILL happen. Some people are simply not suited to it.

If it was me, I wouldn’t push anyone starting dialysis into doing it at home. Sometimes, a person hasn’t been feeling well for quite some time pre-dialysis, and it might be better to just go to the centre and relax while someone else takes care of it, where there are pros and the tools to deal with real emergencies, etc.

Some people reach ESRD without feeling that sick, but a great many people are even sicker than they think they are, and many have what we commonly call “foggy brain” due to how toxins in the blood affect brain function. They can’t think straight, and even if they wanted to, they can’t really concentrate on too many things. All they can do is to let the system take care of them. This is NOT a sign of weakness, it’s just a reality. It can take a few months, maybe as long as 6 months, for things to get better after having started dialysis. Just give it some time. It probably took a long time, many years even, to reach this point, and it will take some time to reverse it. There’s no rush. I was on dialysis in-centre for almost 3 years before I decided to ask for home hemo, and I’m really none the worse for it.

Pierre

#8
#9

mcjane wrote:

My husband, the patient, absolutely will not get involved in learning anything about dialysis other than say he wants home dialysis.

I have been going to dialysis for just over a year now. When I first started I was floored and could not believe this was happening to me. I would skip treatments, 3 or 4 in a row without getting treated and it was from reading this board that I realized I had to be more proactive in my care if I wanted to live, because the course I was on was a one way path to death.

I didn’t care about any of the things I was suppose to do and I didn’t read or care to read anything about ESRD. My wife however read everything she could and would encourage me gently along the way and after a while it starts to sink in that you are going to have to try to learn if you want things to get better for you. Hopefully with a little time your husband will gain a interest in his own health and start reading the site. It is truly a blessing that HDC is available to us. :slight_smile:

#10

Dear mcjane
Everything Gus and Pierre said is true. It takes time first to come to terms with accepting the disease and hoping tomorrow never comes. But acceptance does come and I hope your partner comes around soon.Home training can be very difficult for those of us not technically minded but eventually things to start to make sense. Doing dialysis at home has lots of health advantages and saves time but if you are going to have to do it all for him and he is capable, then that is going to be a big stress on you and then your health may suffer. :?
I wish you well, know that people are thinking of you. 8)

#11

beachy, RichnStacy, Gus & Pierre,
Thanks for your replies & encouragment.

My new tactics…I will not mention or print out anything (which he doesn’t read anyway) about home dialysis again unless Rob himself brings up the subject.

I’ve tried to inspire him to learn & it’s not working at all. He REALLY DOES want home dialysis and I think I know what he’s up to. He wants home dialysis the easy way like in center where he has no involvement and I will do it all for him. If we ever start there is going to be a rude awakening for him when he finds out from someone other than me that he has to know as much, maybe more than I before he can start dialysis at home.

He doesn’t feel great, but he doesn’t feel all that bad either, at least that’s what he tells me so he can start when he wants & believe me he wants out of the center. We have a dear friend who’s brother was on dialysis, don’t know how long ago though, maybe before home dialysis, should have asked. Anyway one day he came home from the center and told his wife he was not going back, couldn’t take it anymore. He died ten days later. When Rob started at the center he hated it so much he told me he wished he were dead.

That’s when I got on the Internet & started researching & found HDC.
It was like the sun came out. Before this I had heard about home dialysis from someone at Davita, while Rob was in the hospital. All I was told that we would have to go to classes for a few months & I would have to have extra plumbing installed. I didn’t even ask questions because I had no idea what questions to ask, but I sure do now thanks to all who post here and specially Dori & Beth.

So my new game plan is to wait until HE brings up the subject & I think he will…soon.

Gus, yes I do the cooking and am very careful about his diet in fact I’m on it with him. He fixes his own breakfast & I had to put a stop to his eating cereal & switch him to eggs and white toast & sometimes a 1/2 cup of Cream of Wheat, chicken, cranberry juice. etc. I also make him record all the fluids he drinks in a day all the while saying just imagine how many more things you will be able to eat when we start HD. :slight_smile:

RichnStacy, I had no idea you could skip a day or two now & then.
Probably not the best idea, but good to know it could be done. I’ve often wondered what would happen if the car wouldn’t start.

beachy, I agree, doing dialysis at home has huge advantages.

When I mentioned in my first post that his bloodwork was good except for his low protein intake I only found that out because I called his dietician & asked about blood tests & how often they were taken. She looked his up and told me his protein was low. They never told Robert, never told me!

Pierre, somewhere on this message board you posted something that was inspirational, life changing. It was about what home dialysis can do for you in every aspect of your life. I was so impressed I printed it out & gave it to Rob telling him I wanted him to read it during dialysis. I don’t think he read it because he told me he gave it to the nurse to read, she gave it back to him saying she didn’t know what it meant. :shock:
Believe me he’s not slow witted, he just doesn’t pay attention to what I say. I told him it was for him to read & even if I said it was for the nurse why wouldn’t he read it first. I sure would have.
I have a tough job ahead of me & I will wait him out, but all I think about is how can I help him. I have to wonder if he has any idea how serious all this is.

Pierre, If you don’t remember the post I will find the paper I printed & post it on this thread if you like.
It makes all efforts worthwhile because the rewards are so great.

Just about all posts here make working towards home dialysis worth the effort.

Jane

#12

mcjane wrote:

RichnStacy, I had no idea you could skip a day or two now & then.
Probably not the best idea, but good to know it could be done. I’ve often wondered what would happen if the car wouldn’t start.

I would never, ever recommend you miss dialysis because what I was doing was extremely dangerous and it could have cost me and my family dearly.

You would be absolutely surprised at how quick the posions will build up in your system. I was being very foolish and playing with fire and I am just so thankful that I came around when I did.

To give you an example of one of the problems I had. I would have these involuntary muscle jerks to the point that I could not hold a cup of coffee in my hands. It was the posions that had built up in my system causing it. Once I started dialysis back on a regular basis I had no more problems.

Good luck with all that you are doing for your husband. Behind every man, is a good woman. Your husband is lucky to have you :slight_smile: I will keep you both in my prayers.

#13

Hi Jane - not the original Jane, but the new one :slight_smile:

Very nice of you to say I wrote something inspirational. I wish I knew what it was, because I might need to inspire myself :slight_smile:

Pierre

#14

Hello Pierre,

Yes, I’m the new Jane. :smiley: Just joined a few weeks ago.
My name is Jane McLaughlin, I’m from Eastern Pennsylvania, near Philadelphia & very near Delaware.
I’m also an RN with no knowledge of dialysis what so ever & very little about kidney disease, but am learning fast.

Here’s your post, Pierre. I didn’t copy the date you wrote it and do not even remember which thread it was on, but it’s a wonderful post, well written, full of hope, powerfull stuff. Everyone should read it. Better still, make a copy.

You too. :wink:

“Sometimes I don’t think people who haven’t done daily nocturnal can truly realize just how close to normal life becomes which is what justifies the trouble of doing it. Except for getting yourself on dialysis late in the evening and off early in the morning, it’s virtually like not having kidney failure at all, and it’s easily as good as having a kidney transplant, when you consider all the potential complications that brings. Every single day is free, diet is free and you can’t even outdrink it. Hemoglobin normalizes, blood pressure normalizes, all the blood work results normalize. There is no way even short daily hemo can touch it. It’s a long gentle dialysis, and you have to experience it to believe it. I mean, when you’re only pumping blood out under 300 ml per minute, your heart doesn’t even know it’s happening. Even drinking without limit, it’s rare that I need to remove more than 300-400 ml/hour of fluid during the night. 300 ml is like a standard glass of water.”

Pierre

#15

Hey Pierre
Do you think I can use your quote in my book??? 8)

#16

Unless of course, you are planning on writing your own? :wink:
Beachy

#17

Hi Beachy.

Sure, be my guest.

Jane, thanks for reposting my original post. I didn’t remember that one :slight_smile:

Pierre

#18

beachy,
I’ll give you an autographed copy of my book when it comes out if you give me one of yours :lol: Better yet, any movie producers out there?-I think I could write a very realistic script :roll:

#19

LOL Jane , a movie! We could have lots of realistic CSI like crime scenes with blood spatter accidents in the script! 8)

#20

Ewww, too wicked… the next Twilight Zone… :lol: