Do I have to do home dialysis

[Bungarian]

Hello Everyone

I found out two weeks ago that I needed to start dialysis. I went and got a tube placed in my neck last week and started three days a week. Today the social worker came by and said she was going to have someone call me because she wanted me to start home dialysis. She said my doctor might be mad because she did not talk to him about it first.

The problem is I don't want to do home dialysis. Can I just refuse to do it and say I want to keep going to the center? I live in a very small house and have no room for equipment or to store anything. Plus I just don't like the idea.

Thanks

[boswife]

hi, welcome and that is strange of the social worker.  of course you dont have to do home...  It's a nice option, but thats it.. An option... 

[Bill Peckham]

Where are you? My first thought was you must be in New Zealand. Your doctor prescribes dialysis not your Social Worker.

[skg]

Definitely not in South Dakota. Here they say "Home hemodialysis? What's that?" or think I must mean PD.

Actually, it isn't quite that bad -- my transplant coordinator knows of *one* person in SD doing home hemo and has offered to put me in touch with him. Looking forward to meeting him. He has the same insurance provider I do -- so he's proof it is possible here.

[Desert Dancer]

Absolutely no reason you have to take dialysis home if you don't want to. A lot of people do it for the health benefits and less strict diet, but if you aren't comfortable with the idea just tell them so. Home hemo is not for everyone but it is nice they offered. A lot of people don't even know it's an option.

I find it a little weird that the social worker took it upon herself to do that. That's a discussion you need to have with your doctor.

[jeannea]

You don't ever have to do home dialysis. In the beginning I was content to be in-center. I was in shock about being on dialysis. I was weak from being in the hospital. I wanted to let them take care of me for a while until I felt strong enough to make decisions. Some people never want to do at home dialysis. It's completely up to you.

[jbeany]

If you are brand new at all of it, it can be a lot to deal with.  If the doc or social worker brings it up again, just say no, it's not something you are interested in at the moment, and tell them you will keep it in mind as a future option.  You get to decide what treatment you want, really!

On the plus side, you already know the social worker is a bit of an idiot.  Better to find that out up front rather than waiting until after you've relied on her to do something for you.   

[CebuShan]

I wanted to do home dialysis from the beginning but I kept putting it off until I finally came to grips with the whole D situation. BUT you don't have to do it at home. Talk to your neph and don't get bullied into anything you're not comfortable with!

[skg]

If you are brand new at all of it, it can be a lot to deal with.  If the doc or social worker brings it up again, just say no, it's not something you are interested in at the moment, and tell them you will keep it in mind as a future option.  You get to decide what treatment you want, really!

On the plus side, you already know the social worker is a bit of an idiot.  Better to find that out up front rather than waiting until after you've relied on her to do something for you.   

I always try to give providers the benefit of the doubt -- maybe, rather than being an idiot, the social worker was just trying to offset the bias that tends to arise (at least in much of the US) toward in-center and away from home dialysis of any sort? (Don't remember where OP was from) An excess of enthusiasm? I'm probably being overly generous, but you never know.

cheers,
skg

[jbeany]

If you are brand new at all of it, it can be a lot to deal with.  If the doc or social worker brings it up again, just say no, it's not something you are interested in at the moment, and tell them you will keep it in mind as a future option.  You get to decide what treatment you want, really!

On the plus side, you already know the social worker is a bit of an idiot.  Better to find that out up front rather than waiting until after you've relied on her to do something for you.   

I always try to give providers the benefit of the doubt -- maybe, rather than being an idiot, the social worker was just trying to offset the bias that tends to arise (at least in much of the US) toward in-center and away from home dialysis of any sort? (Don't remember where OP was from) An excess of enthusiasm? I'm probably being overly generous, but you never know.

cheers,
skg

I'm never that generous with anyone who decides on a treatment option for a patient without taking the time to discuss the pros and cons and figure out what the patient actually thinks first! 

[Riki]

There's no reason you can't continue to do what you're doing.  Here, they try to get everyone on PD, but it's not an option for everyone.  Just make sure that they know you do not want to do home dialysis.  Stick to your guns

[jeannea]

It's amazing how some providers work. When I started dialysis, I woke up from a coma to find out I was on dialysis. I was in shock, very confused, tired, sick. I had these residents in my room demanding that I choose hemo or peritoneal. I had no idea what peritoneal dialysis was. I had only one hemo session while awake so far. I had no idea of the pros and cons of each. All I could do was stare at them. The providers are so used to it that they throw options at us without realizing that we need time to absorb everything.

You may not want to do home dialysis now but change your mind later. You may never want to do home dialysis. Just never let them push you around. It needs to be your decision. Be educated. Learn your own body and how you feel. Make the right decision for you.