How much do you do by yourself?

[MooseMom]

I have yet to start dialysis, but when I do and once my condition is stable, I am planning to go on NxStage.  I've already discussed it with my neph who told me that he is pleased with the clinical results.  He also said that dialysis is stressful no matter how you do it, but home hemo brings some extra challenges.  He said you have to be determined and stubborn and that it can put a real strain on a relationship.  He was NOT trying to talk me out of it; I appreciate his candor.

My husband is very supportive of the idea and has in fact been pro-active in getting information from the NxStage people.  His only qualm is sticking me, but I told him that I intend to learn to do that myself and that I don't want him to do it, anyway, so that concern has been addressed.  What I worry about is him just getting overwhelmed.  He works hard all day at the office and often does not get home until 7:30 or 8:00 PM and is asleep on the couch by 10:30.  So my question is...how much of the setting up, etc can you do by yourself without help from your spouse? 

[monrein]

I went to a self-care centre, where I did everything except remove the lines at the end and sterilize the machine for the next patient.  Once I got up to speed I only ever called a nurse if I dropped a pen or something. 

When I did home hemo a long time ago, my husband used to get the machine set up since I was at work and he'd break down too since I was holding my sites.

There are people here who do or have done Nxstage without a partner.  (Meinuk and Bill Peckham come immediately to mind)

[Trikkechickk]

I do nxstage  - alone.  You are trained to set up, stick, run the the machine and solve problems (alarms).  I wouldn't have it any other way.  By doing the whole process alone, you can be done before your husband even comes home.

[lola]

My husband does it all.........

[M3Riddler]

I have yet to start dialysis, but when I do and once my condition is stable, I am planning to go on NxStage.  I've already discussed it with my neph who told me that he is pleased with the clinical results.  He also said that dialysis is stressful no matter how you do it, but home hemo brings some extra challenges.  He said you have to be determined and stubborn and that it can put a real strain on a relationship.  He was NOT trying to talk me out of it; I appreciate his candor.

My husband is very supportive of the idea and has in fact been pro-active in getting information from the NxStage people.  His only qualm is sticking me, but I told him that I intend to learn to do that myself and that I don't want him to do it, anyway, so that concern has been addressed.  What I worry about is him just getting overwhelmed.  He works hard all day at the office and often does not get home until 7:30 or 8:00 PM and is asleep on the couch by 10:30.  So my question is...how much of the setting up, etc can you do by yourself without help from your spouse?

Hi MooseMom,

Its good to see you searching the answers to your questions before you start. Your neph was right, it is very stressful for both the dialyzor and the caregiver. Especially in training. But the rewards are great.
You are much better off in a home setting than in center. I feel I was more stressed when I had to go in center. You have to worry about getting their and running on their schedule. In most centers I have been to, its like you are just another number.
At home you will get the personal care you need. It takes a great person to be a caregiver.
When training, dont try to take everything in at once. Take it in steps... You will do fine...

///M3Riddler
information is powerful

[Wallyz]

I just got transplanted after 2 years on the nxStage.  The thing I kept in mind is that having the ability to do optimal dialysis was a very valuable thing, so it's worth the cost you pay.  I did almost everything myself, and my wife helped when she wanted to feel involved and when there was an emergency (rare, for me it was severe cramps).

It is easier to stay in center, but it is much better to dialyze daily at home.

[jbeany]

I did pretty much everything except the needle sticking.  I could do it if I needed to, but I wasn't very good at it, and it took me a very long time to get it right.  My partner could get a good stick and have me up and running in minutes.  Everything else I could do by myself, although someone was always around to emergencies.  There were certain things, like labeling blood tubes and starting them spinning that my partner usually did, but only because it was quicker for him to do it while I was hooked up, not because I couldn't have managed on my own.  I did the inventory, ran the pureflow, set up bags if I needed them, started the priming, and did all the bp checks, etc. during the run.  I did like having help with troubleshooting when the alarms went off!

[MooseMom]

Thanks..this makes me more confident.  I am a very organized person, and I know that I will be able to do what I need to do, but I just want to be as independent as possible and not have to rely on my husband too much.  I know he is willing to help, but being willing and being able are two different things.  I guess I worry that he won't know what he's getting in for until it is too late.  I don't want him to agree to do something only to find that he really can't cope with it after all.  That must be awful for a caregiver...to offer assistance and then discover he shouldn't really have offered.

[Malibu]

We have been doing home hemo with NxStage since the beginning of January and I cannot imagine my hubby doing it all himself.  I just really think there is no way.

He gets everything ready and is sitting in the chair ready to stick when I get home from work.  Although he sticks himself (a daunting, challenging tast that some cannot master and don't feel bad if you are one of them) I assist.  Here are the things that I do that I think he could not do: 

Tape the needles in place.
Get up to raise the blood flow level (every treatment starts low and slowly raises the flow).  He cannot move his arm very much or his pressures go wacky.
Administer med's through the venous patient access.
Draw lab tubes.
Place lab tubes in the spinner.
Get lab tubes into kitchen / refrigerator.
Pull the lines out while holding the graft to clott.  (This is causing a big problem because he is squirting blood at the end and it is freaking him out.  He needs to get over this.  He will)

I think that's it.  Perhaps after we have a couple more months under our belts things will be different.

I can tell you that my hubby would not last in-center; I am very thankful that we have the option to do it at home.  Thanks NxStage.

[MooseMom]

I just don't want my husband to have to do EVERYTHING for me.  I will want to take as much of the burden off of his shoulders as possible.  Malibu, you are only a few months in, and I'm sure your husband will eventually find a better balance.  I think if I saw my blood squirting all over the place, I'd freak out too, mostly because I know that I'd be the one having to clean it all up.  More housework!

[tyefly]

I do everything my self too......  its really easy.....there is nothing hard about any of it...... the hard thing is sitting there.....   I am working on nocturnal.......  you can do this      any one can do this if I can

[Brightsky69]

I am on PD and my boyfriend is really great about helping me. I use three 2.5 bags a night plus 2 drain bags. My BF always takes care of disposing of my bags and drain bags in the morning. He gets ride of all the boxes and stuff for me. I just step up the machine and hook up on my own.
My BF really is amazing....when i was first telling him about PD he almost passed out just hearing about it.
If I were on Home Hemo I don't know what we would do. He is really shaky around needles and I wouldn't be able to stick myself...ugh. 
I am not good at all with giving my self shots.

[vcarmody]

My husband does most of it, he sets everything up.  I just stick him then monitor his treatment and vitals, and at the end I pull the needles.  Not sure about him, but I love this whole NxStage thing.  I love the fact that we can do early morning, late at night, middle of the day... what ever fits in our schedule.  I have to agree with ///M3Riddler, when training try not to take in to much at once, that was almost my down fall. I was so stressed worrying about everything that I could not relax and learn.  I came home afraid of everything but I finally realized, I can do this and so far everything is going great.  We are going on our first cruise in April and our 2nd in Sept, we also hoping to go to Vegas in between, thanks to the freedom of NxStage.  It is a lot more treatment time, but I even noticed that my husband has so much more energy, he used to come home from center and sleep for hours. He never sleeps during or after his NxStage treatments and he is not sick as much. 

[Malibu]

That is great vcarmody!  I am happy for you guys.

[Triker]

I pretty much do it all, but I do use my partner to remove the needles.

[MooseMom]

I pretty much do it all, but I do use my partner to remove the needles.

Oh, that's good to know.  I would like to do as much as possible by myself.  But I can see needing someone to remove the needles.

[valve]

Hi Moosemom!

I  am on the NxStage and have been for about a year now.  I do everything myself.  I do have a partner that I have, but he is mainly here in case of an emergency.  It was advised to me during training that I shouldn't be alone during the treatments.  I learned how to stick myself.  I figured I would like that better only because I get a scared feeling when someone else is putting a needle in my vein. 

I hope that you find all the answers that you are looking for and hope that you get on the Nxstage.  I have to say it is FAR better than going to the center.  I'm here if you have any other questions.

God Bless!!!!

[MooseMom]

Thanks so much for your reply, valve.  I'm so glad that NxStage is working so well for you; stories like yours are why I want to be trained to use it as soon as it is appropriate.  I will certainly be sure to ask you should I have more questions...I know I will have LOTS of questions in the near future.

[Caroline85]

Hey there! I do everything by myself from setting up the machine to pulling my needles. I have a roommate but we have different schedules and the one time I asked her to help me with pulling my needles she didn't hold down the gauze with enough pressure and I bled all over. She freaked out so I knew that wasn't going to be an option anymore lol.  I was very intimidated at first especially because I had such a horrible time at training due to my fistula being a problem but it got better. You definitely wanna learn how to stick yourself if you can handle it (I never thought I would but my training nurse made me and I'm so grateful!) I didn't think I could but now I won't ever let anyone else do it! I don't know anything about in-center because I never had to do it but with Nxstage you have so much more freedom and that was the biggest thing for me since I have a crazy work schedule! I hope it all works out for you!

- Caroline

[dyann]

I do it all by myself  my daughter traned if I need help but otherwise its all me  not bad at all

[MooseMom]

Oh, that's so good to know.  I know my husband will be happy to train and then help, but I want to be as self-sufficient as possible because it just makes me feel more secure.