Home Hemo Dialysis Alone

[justagirl2325]

I came home from work about 6pm last night...early enough to get husband to eat and then on the machine by 7pm so he can be off by 11pm only to find him 2.5 hours into his treatment.  He hooked himself up and started without telling me (or anyone for that matter).  When we agreed to go the home route we had to sign a piece of paper that he wouldn't do it alone...just frustrated that he wouldn't talk to me before doing that.  We live in an area that is served by volunteers for 911 so for me to get home and get him to the hospital would be an hour.




EDITED: Moved to dialysis home dialysis discussion- Noahvale, Moderator

[Simon Dog]

It is quite possible to do treatments without any assistance (in fact, that's my normal mode of operation - though I do my "no assistance" treatment when my care partner is in the house).   Policy and risk avoidance spawned the policy if "someone else must be home".

There is a clinic in NY that supports true "home alone" via remote monitoring, plus that are others I have heard of that will allow it as long as the patient has a "fallen and can't get up" button.

[cattlekid]

I am NOT saying that anyone else should take my lead but after about four months of very stable treatments, DH started going to bed before my treatments were over.  Then we progressed to him not always being present for hookups either.  After about six months, I did my treatments basically alone.  My clinic nurse "knew" about it but as far as anyone else in charge knew, DH was always present. 

[noahvale]

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[justagirl2325]

Thanks for the replies, and links...those made for very interesting reading.
 
I can understand wanting to do it alone, even when I'm there he does everything by himself (I am just the "bringer of things he can't get up and get like coffee and cookies") but we have had three instances where his BP dropped so low he lost touch with reality.  At those times he can't give himself saline as he can't think or move (really scary to watch, I've never seen anyone die but that is what it looks like).  He comes back around in a minute or so after I've given him saline.  So when he says I'll just give myself saline if I feel sick I don't trust that he can/will react quick enough.

So if he would have asked/discussed it with me first I would have been very reluctant, but this shouldn't suprise me he's always been the "ask for forgiveness" guy rather than the "ask for permission" guy. 

[iolaire]

we have had three instances where his BP dropped so low he lost touch with reality.  At those times he can't give himself saline as he can't think or move (really scary to watch, I've never seen anyone die but that is what it looks like).  He comes back around in a minute or so after I've given him saline.  So when he says I'll just give myself saline if I feel sick I don't trust that he can/will react quick enough.

I understand your concern here.  We do get disoriented with low BP.  You might ask him to wait to pull of much liquid until you get home?  That would allow him to get started with the cleaning process on his own, but try to control the opportunity to impact his BP until he has his helper?  (FYI: My first impression reading your first post was that its fair on his side to want to start without you.)

[cattlekid]

That is an excellent point.  One of the reasons I felt less anxiety when doing home treatments alone is that it was rare that I pulled off more than 1.5 kilo during a treatment.  Since I am a big girl (my dry weight was 95 kilos), 1.5 kilo over almost four hours didn't have much effect on my BP.

I understand your concern here.  We do get disoriented with low BP.  You might ask him to wait to pull of much liquid until you get home?  That would allow him to get started with the cleaning process on his own, but try to control the opportunity to impact his BP until he has his helper?  (FYI: My first impression reading your first post was that its fair on his side to want to start without you.)

[codyedwardwilliams]

It's really hard to do treatments alone. We still need someone to assist though

[cassandra]

It's really hard to do treatments alone. We still need someone to assist though

It depends very much on the person. I really appreciate living in the UK where HHD 'alone' is okay by the NHS. I've been doing it alone for over 2 years now, and find it has given me some kind of 'self worthiness/respect ' back.
I hope to be able to continue this for a long time.

[Angiepkd]

I went through this same scenario with my husband (I am the patient).  I hated having to wait for him to get home to hook up, so I started doing it early.  He was so mad at me the first time he came home and I was already running.  It was a constant battle for us, but I am extremely stubborn and persistent, so I kept doing it despite his complaining.  I have always been very independent and having to wait for a "babysitter" really ticked me off.  I was pretty stable for most of my treatments, and only had a couple occasions when there were issues.  Try to understand how hard it is to feel like you have lost your independence.  That being said, there were a couple of times when I needed his help.  I have no kidneys, so every ounce of liquid I consumed had to be taken off on the machine.  Sometimes it was 3.5 liters, which was hard on me.  If your husband doesn't generally take much off, I would be comfortable with him starting without you.  Try to reach a compromise with him if possible.  Good luck!  It will all work out.

[Michael Murphy]

I am moving to the Adirondack State Park in upstate New York this spring.  I have investigated the few options for dialysis in the Park and one clinic in Saratoga Springs supports Internet monitoring of your Dialysis sessions at home.  I assume you provide the local rescue squad your key and the clinic call them if you get in trouble.  Now in the park some people are 60 to 90 miles one way from the nearest clinic. In the winter this can be difficult  since it snows a lot in the Dacks.  I am fortunate there is a other clinic in Amsterdam that is only 30 miles one way from my house.  The good news is due to lack of traffic at the time I have to travel its a 35 minute trip.

[Simon Dog]

I think NY State has a regulation that requires all home hemo patients be remotely monitored in real time.  Once that structure is in place, home hemo becomes something clinics are more likely to support.

[Hemodoc]

Being able to hook up and take off yourself is an important survival skill for,home dialysis. If you live in Canada, dialzying alone is expected. If it is your disease, it is your responsibility is their attitude.

I can hook up, dialyze and pull my own needles by myself. Not a big deal. I wouldn't get upset. Seems like he is just giving both of you a little more freedom in your schedule.

Bill Peckham has dialyzed at home alone for years. At first he listed his dog as his care partner. Now he doesn't even bother with that ruse. Rich Berkowitz dialyzed by himself in his basement. His wife and son were around, but he did everything himself during treatment. His son did at times set up his PureFlow for him. But that is only about a 5 minute job.

Being totally independent is the best way to be as a dialysis patient. Encourage him.

[Simon Dog]

Being totally independent is the best way to be as a dialysis patient. Encourage him.

Absolutely.

I use a FMC clinic, and am occasionally reminded that "policy" requires that I not dialize without someone else around.    Naturally, I would never do such a thing, but I still do the entire procedure without any help.

My doc warned me that the #1 reason for home hemo to fail is caregiver burnout, and I'm not going to let that happen.

[PrimeTimer]

I think it's great if a person is able (and wants) to do home-hemo alone. All the power to them! In fact, I admire "lone dialyzors". But (and this is just me), as a care partner I know I would worry A LOT and be REALLY stressed if my husband did it without me at least being around. And I'd be angry if he tried it without discussing it with me first. Might sound unfair or selfish of me because I'm not the one suffering from ESRD but nonetheless, we both experience anxiety and fears and have a lot of stress in our lives in addition...to his ESRD and dialysis and I don't want to be put through any more than I already am and, if he tried dialyzing alone, I would be thinking about him and be a nervous wreck wondering if he's safe. Maybe that would be my problem to get over and not his but still, when you're a team, you're a team and you should not go rogue without discussing it with the other. Altho we've only been doing home-hemo a little more than a year, we have experienced various "unexpected" situations. In fact, one such situation occurred just the other night. My husband and I are both getting over colds and the other night he coughed during treatment. When he coughed, I saw both his arms go up. He said he didn't even realize that but I saw his arms go up. Few minutes later, his arterial buttonhole started oozing blood, so much so that I had to take him off the machine. It was not just a little oozing that dries up, blood pooled around the needle and his tapes were wet. Luckily, the needle did not fly out when he coughed but despite being taped up, even just slightly bending his arm was enough to move the needle. Thankfully his buttonhole wasn't damaged, there hasn't been anymore oozing but I am glad I was there. Also (and this is a biggie), we both know the warning signs he exhibits ahead of a BP crash. (for him, the first signs are nausea and BP starts diving).  I take his vitals every 30 minutes and I am glad I do, it's surprising how quickly things can go south. Doesn't happen very often but when it does, I'm able to act more quickly than he can to avoid a crash, so this is just another example of why I'm glad to be around for his treatments. Again, I truly do think it's great if people are able to dialyze alone and I don't think they should be denied the right to but, for all kinds of reasons I know that my husband should not be a lone dialyzor. 

[Sugarlump]

We have recently started home haemo in the UK and it was made clear from the start that my partner had to be in the house, within earshot. I don't usually have any bp problems til sometimes in last half hour when I hit my dry weight. But I can feel it coming on.
At the moment my partner tends to stay in the dialysis room, except for making a cup of tea etc. I am hoping as we get more sessions under our belt, that he will relax a bit more. As long as he is around in the house , I feel happy enough. I can't needle myself because of position of fistula so I need him to put me on. I can mange most of the other stuff...
I understand as a new carer/dialysis facilitator it's probably scarier to him than me...
I am loving it, being at home (no long journeys too and from hospital or bad tempered nursing staff!), having dialysis in my pj's and munching a bacon sandwich.Being "partly" in control is still quite empowering!

[PrimeTimer]

Sugarlump:  Congrats on being "home"!  Sounds like you and your partner make a great team, as I think that is a must if a person is going to have a care partner involved. My husband and I setup his machine in our living room so that we can watch TV together or gab, works out pretty good. Your partner probably doesn't mind staying in the room with you during your treatments, he probably wants to be able to monitor you but also wants your company and be able to talk to you. It's great that he does your needles for you, very brave of him! Well, you are BOTH brave to be doing home-hemo!

[chuckdims]

I did that once.  It went fine, except my wife was none too pleased.

I do it with my 8 year old daughter sometimes without my wife.  She knows how to help me and what to do in the case of an emergency.

[Sugarlump]

We had a minor emergency on dialysis this morning (bearing in mind we have only been home alone for 2 weeks!)
V needle wasn't quite right and pressures shot up ... he fiddled around with the needle but it wouldn't settle, so putting all his training into practise and trying not to panic
he put me into re-circulation, took the needle out and waited for it to stop bleeding then re-inserted needle and back on dialysis. Everything going fine now!
i couldn't have done that on my own!!!
Yay for my partner who couldn't even stay with me for a blood test without feeling faint when he first met me!!!! He is a star 

[Simon Dog]

within earshot

I got one of those portable air horns (generally used for boating or sporting events).    My wife knows that the toot of the angry horn is a call for stat assistance.     Never had to use it .... yet.

[cassandra]

he put me into re-circulation, took the needle out and waited for it to stop bleeding then re-inserted needle and back on dialysis. Everything going fine now!
i couldn't have done that on my own!!!

Wow!! Well impressive, Mmm probably time for me to start practising recirculation, than again, I'd probably take me of, and try again tomorrow?

[Sugarlump]

That would have been our second option if the needle wouldn't go in the second time ... my v line can be a little tricky. Has to be absolutely at the right angle and the vein does actually move
a bit from time to time.
I am planning a Valentines Dinner tonight with a glass of wine so didn't want to be fluid heavy today 
We are only supposed to dialysis on a Sunday in an emergency as no phone backup.

[noahvale]

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[Sugarlump]

Yes

[Simon Dog]

At the moment my partner tends to stay in the dialysis room, except for making a cup of tea etc. I am hoping as we get more sessions under our belt, that he will relax a bit more. As long as he is around in the house , I feel happy enough.

You will eventually get to the point where you feel very comfortable running the show with you partner in "distant earshot" rather than in the same room.    Don't assume your partner won't burn out - anything you can do to reduce the burden on him will help you both in the long run.