Can you do it alone?

[MooseMom]

I've read up on home dialysis, and there is one thing that I am a bit unclear on.  If you do any kind of home dialysis, do you need someone to assist you each time, or can you do it all on your own?  Do some forms of home dialysis make you more "independent" than others?

Thank you.

[Ginger]

Check out the  www.homedialysis.org  web site for many of the different types of home dialysis therapies. There are some that can be done alone. PD is the most common therapy that can be done alone. PD is also easy to learn.
Good luck.

[Epoman]

I've read up on home dialysis, and there is one thing that I am a bit unclear on.  If you do any kind of home dialysis, do you need someone to assist you each time, or can you do it all on your own?  Do some forms of home dialysis make you more "independent" than others?

Thank you.

I have done Home-Hemo with the NxStage by myself a couple of times. Although NxStage does not want people doing it alone.

- Epoman

[Black]

Hemodialysis alone is totally NOT ALLOWED by any dialysis center or dialysis machine manufacturer -- BUT there are people who do it anyway.  At least one poster here has done dialysis alone (he is very experienced!) and there are probably several here who have done so occasionally.  But don't expect them to all jump in to say so -- and possibly jeopardize their status as a home dialysis patient.

[jbeany]

They expect that most patients on PD will do it alone, I think.  I want to start home hemo, and I want to be able to do it all by myself, too.  I want to learn to stick my own needles and be able to do everything by myself.  I was thinking about that more for emergencies than every day, though.   I wouldn't necessarily be doing the dialysis alone - I just wouldn't have a trained partner with me. My hubby will be training to be my partner, but what if he gets stuck somewhere and can't get home?  Or something as simple as breaking his wrist - how would he stick my needles? If I could do it all myself, I could have any untrained friend or relative sit with during the dialysis in case I had a problem I needed help with, but I wouldn't have to worry about missing dialysis because I didn't have someone to cannulate me and start the machine.

[MooseMom]

Well you see, I'm in my second marriage.  My husband and I are celebrating our third anniversary together today, as a matter of fact.  He knew that I had a kidney disease, but it was only after less than a year of getting married that I discovered how bad it had become and how many meds I was going to need.  I joke that I married him only for his insurance!  LOL!  Anyway, he has been very supportive emotionally, but I find that as time goes on, I am keeping my feelings more and more to myself.  I don't think that is good for any relationship, but I don't want him to be subjected to the full impact of my fear.  I guess I want to protect him from, well, myself.

He works the usual 8-5 during the day, and he teaches at night several times a week.  He is not home a lot, and when he is, he is tired, and I'm sure the last thing he wants to do is faff about with me and my needles and machinery.

I guess I feel like this is not what he was hoping to get when he married me, and as I try to imagine which path I will take when it comes to dialysis, I find myself drifting more and more away from home dialysis simply because I don't want anyone else to be involved. 

I do want to make it clear, though, that he has NEVER said anything that would make me think he would not help me.  Quite the contrary.  I suppose I just feel guilty for the emotional tsunami that followed learning just how serious my condition is and how fragile my "remission" is.

Did any of you have real reservations about starting home dialysis because of this issue?

Moderators: if you think this belongs in another forum, please move it.  Sometimes these topics overlap.

[charee]

I will be learning home hemo soon and have been told i cannot do it alone so hubby is coming with me to learn also .When we get home with it he will probably have to look for another job as at the moment he stays away from home  for his work .We are trying to work  around this but he really wants to be able to spend time with me and help sometimes i feel very guilty for putting him through this change in our life but he has been fantastic and wouldn't have it any other way but its still abit of a worry  if he can get another job at this stage in his life but as he is always telling there are alot of people alot worse off than me ..

[Rerun]

Well you see, I'm in my second marriage.  My husband and I are celebrating our third anniversary together today, as a matter of fact.  He knew that I had a kidney disease, but it was only after less than a year of getting married that I discovered how bad it had become and how many meds I was going to need.  I joke that I married him only for his insurance!  LOL!  Anyway, he has been very supportive emotionally, but I find that as time goes on, I am keeping my feelings more and more to myself.  I don't think that is good for any relationship, but I don't want him to be subjected to the full impact of my fear.  I guess I want to protect him from, well, myself.

He works the usual 8-5 during the day, and he teaches at night several times a week.  He is not home a lot, and when he is, he is tired, and I'm sure the last thing he wants to do is faff about with me and my needles and machinery.

I guess I feel like this is not what he was hoping to get when he married me, and as I try to imagine which path I will take when it comes to dialysis, I find myself drifting more and more away from home dialysis simply because I don't want anyone else to be involved. 

I do want to make it clear, though, that he has NEVER said anything that would make me think he would not help me.  Quite the contrary.  I suppose I just feel guilty for the emotional tsunami that followed learning just how serious my condition is and how fragile my "remission" is.

Did any of you have real reservations about starting home dialysis because of this issue?

Moderators: if you think this belongs in another forum, please move it.  Sometimes these topics overlap.

I understand your feelings.  You don't want him to see how sick you are.  You may feel like he is getting the short end of the stick in this relationship.  You may feel like all your dreams as a couple are over because of you.  Look, the more you try and hide it from him the more you will grow to resent him for not understanding why you are tired or why you don't feel like having sex or why you don't feel like cooking.  If he is going to be a jerk, let it happen.  If he isn't, then no worries.

If I were you and going to do Hemo, I would start in center.  It is a lot of pressure on a marriage to expect him to come home from work and then put you on dialysis....and sit there with you.  Once you have been in center a while and YOU are more comfortable with the process maybe both of you will decide to come home with it.

I hate to bring up my x-marriage, but we had no choice but to be home.  We lived 2 1/2 hours from any major medical that had dialysis.  It was awful.  I was 25 years old and he was 12 (okay 27)......too young anyway.  Our home turned into a hospital.  The machine was in our kitchen, the chair in the livingroom and we would haul it into the kitchen....  Then I discovered PD.  I wish I had known about that from the beginning.  But, I think I probably had to go through hemo to appreciate PD. 

Look, I strongly suggest counseling.  He needs to understand what role he needs to play with a spouse with a chronic illness.  It is NOT terminal it is only chronic.  That means it doesn't end.

[kitkatz]

I understand.

[MooseMom]

If I were you and going to do Hemo, I would start in center. It is a lot of pressure on a marriage to expect him to come home from work and then put you on dialysis....and sit there with you. Once you have been in center a while and YOU are more comfortable with the process maybe both of you will decide to come home with it.

This is the direction toward which I am leaning.  All of the pressure I feel is coming from myself, not from him.  The dialysis center is literally a ten minute drive from my house.  My mom uses it when she comes up from Texas to visit, and she really likes it. 

On top of that, I think I may have a desire to keep my home "dialysis free".  Our home is our refuge, and I am not sure that I want the "dialysis world" to intrude upon that.  I guess this is one of those times when you don't really know what you want, and you won't know until the time comes.  Maybe I should just stop thinking about it for now.

Anyway, thanks everyone for your replies!

[Epoman]

If I were you and going to do Hemo, I would start in center. It is a lot of pressure on a marriage to expect him to come home from work and then put you on dialysis....and sit there with you. Once you have been in center a while and YOU are more comfortable with the process maybe both of you will decide to come home with it.

This is the direction toward which I am leaning.  All of the pressure I feel is coming from myself, not from him.  The dialysis center is literally a ten minute drive from my house.  My mom uses it when she comes up from Texas to visit, and she really likes it. 

On top of that, I think I may have a desire to keep my home "dialysis free".  Our home is our refuge, and I am not sure that I want the "dialysis world" to intrude upon that.  I guess this is one of those times when you don't really know what you want, and you won't know until the time comes.  Maybe I should just stop thinking about it for now.

Anyway, thanks everyone for your replies!

In-center sucks bottom line, I did it for over a decade and I do NOT want to ever go back. I too was worried about having the added burden for my wife but my wife insisted that I not even think about that. She is VERY supportive, but honestly with NxStage and the Pureflow I practically do it all myself, I wait until my wife comes home from work but she is usually in the other room doing her own thing and she just checks up on me every so often. I stick myself and have been doing that for several years. There is NOTHING like the FREEDOM of dialyzing when ever YOU want not, when a center tells you to come. Plus no more LONG weekends and feeling sick, late Sunday night.

"In sickness or in health, for better or for worse" remember that? 

- Epoman

[MooseMom]

Yeah, I can see your point, epoman.  I'll definitely keep that in mind.  Good points.

[tamara]

Definitely able to do it on your own, yeah I live with my partner Allan, but have always, inserted my needles myself,set up myself, and come off by myself.

Doing nocturnal I do it in our spare room so Allan can sleep, so every treatment I am alone, and there has been many nights where he has been away that I have done it completely alone. You learn to calm down, and don't panic and think things through, the worst that can happen is that you have to come off the machine.

Have a phone handy, and make it a mobile (cellphone) if you can in the event of an electrical blackout your home portable may not work at the time of the blackout. Also a  torch that is either rechargeable or you check the batteries often is needed just in case power goes out as well.
Also a list of emergency numbers.

But be Calm and In Control of the Situation you are in at all Times.

[nextnoel]

They expect that most patients on PD will do it alone, I think. 

I just need clarification - for PD training, you do NOT have to have another person train with you, right?

[mallory]

Nextnoel,  I went to PD training by myself, and I went to PD cycler training by myself.  I showed my sister how to do it in case I'm ever sick and need her help, but I do it by myself all the time.  It's very easy, it's really not a two-person job.

[nextnoel]

Thanks, Mallory, I feel better now!  I know I could do PD by myself, but I was afraid I'd be in trouble if I had to find someone to train with me!  My daughter is great at helping me in about every way possible, but she goes faint at the sight of anything medical, even blood tests!  She is very sensible, and hates being that way, but can't control it!  (And I don't have any backup candidates.)

[BigSky]

I wouldn't mind doing hemo at home however there is no way I could do it myself.    My problem would occur in the removal of needles.

Of course yesterday the home teaching nurse was asking me why I didn't do it at home and I told her the problem and if it could be overcome I would do it.  She then suggested PD.  I am not sure she liked my answer on that one.   Some might  like it, but that thing of having a hole gutted into you full time just doesnt float over too well with me.

[Bill Peckham]

I've selfdialyzed at home on hemo since August 2002. I know many units have seemingly fixed policies against selfdialysis but I think those policies should be challenged. There is a clear mortality advantage gained through more frequent hemodialysis, more frequent hemodialysis is, in most cases, only practicable at home, therefor there would have to be compelling evidence to deny a person this modality, routinely, because they do not have a helper. There is no compelling evidence of selfdialysis's inherent and unacceptable risk. There are fears, but mostly these fears are over blown and the perceived risks of selfdialysis pale compared to the risk of getting only intermittent dialysis.

If Bigsky could demonstrate confidence to his own satisfaction that he could complete his treatment alone then it should be up to him if he would like to selfdialyze. I'll have to look to see if there is a thread on removing one's own needles but typically there is a way, it was/is the scariest part for me to do. I compare selfdialysis to driving a car, if you can do one you can probably do the other. Also it is necessary to remember that not every fender bender results in death. In selfdialysis this means that problems do arise but they can be dealt with - I say that I've had a few spin outs but the airbags have never deployed.

At my center the official policy is that you need someone in the house (not necessarily officially trained) and that you should have some kind of "I've fallen but I can't get up" button system if there is no one else there i.e. dialyze alone, which I think is an ill conceived response to the desire to cover all the bases. I think a better response would be to list what we are guarding against and then look at each concern on its merits and consider ways to diminish the risk. How have we diminished the risk when we rely on a helper who is subject to the same range of "what ifs" as any human being? At least at my center I am expected to retain my adult independence and I am expected to retain sovereignty over how much and what sort of risks I am willing to accept. I wish more centers held this expectation even if they did require that you push a button in a ... what exactly? How would that be easier/better than calling 911?

[Zach]

Our center allows patients who are alone to perform nocturnal dialysis.  It has developed a remote monitoring system of the patients during their dialysis while they sleep.

[Bill Peckham]

My Mom would like the ability to remotely monitor me - I imagine her sitting at her computer throughout my run tapping the refresh button. Seriously I would not object to remote monitoring but I have difficulty justifying the costs when I think about the situations it could resolve but if it'd ease any fears people have then maybe that is worth the price. Just to get beyond this "issue".

[Epoman]

I've selfdialyzed at home on hemo since August 2002. I know many units have seemingly fixed policies against selfdialysis but I think those policies should be challenged. There is a clear mortality advantage gained through more frequent hemodialysis, more frequent hemodialysis is, in most cases, only practicable at home, therefor there would have to be compelling evidence to deny a person this modality, routinely, because they do not have a helper. There is no compelling evidence of selfdialysis's inherent and unacceptable risk. There are fears, but mostly these fears are over blown and the perceived risks of selfdialysis pale compared to the risk of getting only intermittent dialysis.

If Bigsky could demonstrate confidence to his own satisfaction that he could complete his treatment alone then it should be up to him if he would like to selfdialyze. I'll have to look to see if there is a thread on removing one's own needles but typically there is a way, it was/is the scariest part for me to do. I compare selfdialysis to driving a car, if you can do one you can probably do the other. Also it is necessary to remember that not every fender bender results in death. In selfdialysis this means that problems do arise but they can be dealt with - I say that I've had a few spin outs but the airbags have never deployed.

At my center the official policy is that you need someone in the house (not necessarily officially trained) and that you should have some kind of "I've fallen but I can't get up" button system if there is no one else there i.e. dialyze alone, which I think is an ill conceived response to the desire to cover all the bases. I think a better response would be to list what we are guarding against and then look at each concern on its merits and consider ways to diminish the risk. How have we diminished the risk when we rely on a helper who is subject to the same range of "what ifs" as any human being? At least at my center I am expected to retain my adult independence and I am expected to retain sovereignty over how much and what sort of risks I am willing to accept. I wish more centers held this expectation even if they did require that you push a button in a ... what exactly? How would that be easier/better than calling 911?

I was waiting for you to reply. because I knew you have been dialyzing alone for a while now.  The policy at my center is "You need a partner as well" however that is just to cover their ass. They know some patients do it alone.

- Epoman

[jester]

If I were you and going to do Hemo, I would start in center. It is a lot of pressure on a marriage to expect him to come home from work and then put you on dialysis....and sit there with you. Once you have been in center a while and YOU are more comfortable with the process maybe both of you will decide to come home with it.

This is the direction toward which I am leaning.  All of the pressure I feel is coming from myself, not from him.  The dialysis center is literally a ten minute drive from my house.  My mom uses it when she comes up from Texas to visit, and she really likes it. 

On top of that, I think I may have a desire to keep my home "dialysis free".  Our home is our refuge, and I am not sure that I want the "dialysis world" to intrude upon that.  I guess this is one of those times when you don't really know what you want, and you won't know until the time comes.  Maybe I should just stop thinking about it for now.

Anyway, thanks everyone for your replies!

In-center sucks bottom line, I did it for over a decade and I do NOT want to ever go back. I too was worried about having the added burden for my wife but my wife insisted that I not even think about that. She is VERY supportive, but honestly with NxStage and the Pureflow I practically do it all myself, I wait until my wife comes home from work but she is usually in the other room doing her own thing and she just checks up on me every so often. I stick myself and have been doing that for several years. There is NOTHING like the FREEDOM of dialyzing when ever YOU want not, when a center tells you to come. Plus no more LONG weekends and feeling sick, late Sunday night.

"In sickness or in health, for better or for worse" remember that? 

- Epoman

People in Europe have been doing self cannulation and home hemo with parteners or alone for over twenty years now (Tassin France)

[KICKSTART]

If you are just talking about hemo then sorry i dont know , but for anyone doing CAPD then there is no problem. I have been doing it on my own since the start and i live alone. I went for 3 days training on my own then came home and started. Like anything else its easy once you know how!

[angieskidney]

If you are just talking about hemo then sorry i dont know , but for anyone doing CAPD then there is no problem. I have been doing it on my own since the start and i live alone. I went for 3 days training on my own then came home and started. Like anything else its easy once you know how!

With PD there is no question. The thread is mainly about Home HemoDialysis because it is questionable if they should be allowed to do it alone incase there are any problems.

Many dialysis units will not train for home hemo if you are living all alone. Another reason why even if they got it in my city and even if my apartment manager decided to change the policy and allow plumbing alterations or NxStage became available in my country, I probably STILL would NOT be able to do it as I live alone.