Dialysis at home? Some advice please.

[romanyscarlett]

Are there many people on here who have HD at home? I could really use some advice on the subject.

At the moment I have HD at my local dialysis centre. I have the twilight shift which means I don't finish until 11pm at the earliest. It's usually 11.15pm and by the time I get my blood returned to me, stop my fistula bleeding etc I don't get out of there until gone 11.30pm.

There is no way I can continue treatment with this timeslot. I've asked for a day slot but there is a waiting list and it takes months for one to become available. I know there are a few people ahead of me on the list so it could be up to a year before I get to move. I was told they put all the young people on the late slots and the elderly patients on the early slots. Even if a day slot becomes available, chances are a new elderly patient will be given it before they offer it to one of the established younger patients.

Getting home at midnight is having a negative impact on my home life. My boyfriend likes to wait up for me to make sure I get home ok and to check I feel alright. However he needs to get up at 6am for work so he's only getting 5.5 hours sleep three nights a week.

It also seems that my body needs 12 hours sleep to recover from dialysis. I had hoped to utilise my free days (Tues and Thur) by getting a job after my second round of surgery but I'm not waking up until 1pm so the whole day is wasted. The same thing happens on a Saturday which makes me so sad because I want to spend the day with my boyfriend but instead I end up sleeping.

There are numerous other reasons why I want to move to days but I don't want to make this post into an essay!

I was offered the choice of home HD but I turned it down thinking that centre dialysis would be better. Now I'm not so sure! What I wanted to know is, what training needs to be done by the patient and family to enable someone to have HD at home? How do the materials arrive/get disposed of? There is no way I could ever insert the needles into my own arm so is it possible for a family member to do this? Any help/advice that anyone can give me will be hugely appreciated.

[gothiclovemonkey]

Have you thought about doing PD?
I personally think its my life saver. I have a 6 year old son and finding child care was really difficult, and the way i felt all the time, i was always so weak and tired. Im still tired, but i have anemia so im working on that now. But PD has given me alot my freedom, and i do feel a ton better!
Ive been on PD a little over a month now, and i like it 300% better than HD. I dont know much about home HD, but i really think u should look into PD. The only complaint i really have, I dont like having the cath hanging out of my belly, its not the most attractive thing, but neithe is my fistula lol Of course the diet changes too, u have to do alot more protien and u can eat potassium (usually... everyone is different) And Ive been able to drink a little more than i could on HD. (thats a HUGE plus for me!) And i spend a ton more time with my lil man, which is the best part. I even let him "help" me, which makes him feel really special.
Good luck!

[Zog]

My wife does home hemodialysis 6 days/week.  She doesn't require much recovery time if any as a result of the frequent treatments.  It took us about 2 weeks of training to set up the machine and another week to get used to sticking needles.  My wife sticks all of her needles.  She wouldn't have it any other way, because she knows what is happening on both sides of the needle.

She did PD as a teenager and had to stop because of scarring in her peritoneal cavity and the pain it caused, but says when it worked it was the best mode of dialysis. 

Check out the NxStage and PD forums on this site for more stories.  I don't know if NxStage is an option where you live (based on how you spelled center), but it is pretty cool because you can travel with it.  You can travel with PD too.  Most of our supplies are delivered to our house.  Heparin, needles, tape drapes and gauze are given to us monthly at incenter clinical appointments.

She is able to work part time and when she isn't working she is taking care of our 2 year old.

I would say you should look into it, but you really have to have a stable housing situation and a dedicated partner for home hemo otherwise in center maybe easier to manage.

[romanyscarlett]

I have considered PD but the thought of having a permanent tube attached to my stomach makes me feel physically sick. I used to cry and have panic attacks whenever I had a blood test or injection of any kind but I still felt that HD would be preferable to PD. I had hypnotherapy for my fear of needles which has been hugely successful but I don't know whether hypnotherapy would work for my aversion to PD.

I keep hearing people say how much better PD is because of the increased freedom but I don't know if I've got it in me to conquer my irrational fear of PD. I was also told that PD may not be a viable option for me because of extensive scarring to my abdomen from the removal of one of my PKD kidneys. I'm waiting for a date to have the second one removed so PD wouldn't be possible until after the operation so we could assess whether there is too much scarring.

I actually had a call today from my dialysis centre to tell me I should arrive later than usual because my machine won't be ready and as soon as I hung up the phone I burst into tears. It might sound stupid compared to all the awful things that we all deal with but this time issue is crushing me. Like I said before, I've conquered my fear of needles, the nurses always comment on my positive outlook and I'm quite happy with the way treatment is progressing but finishing so late is soul destroying.

If I do start having treatment at home it would be my mother who would have to learn how to stick me and operate the machine. I don't have a button hole yet so I'm not sure how difficult it would be for her to successfully stick me.

[gothiclovemonkey]

 
I know that its scary, and it drove me nuts when i had to wait longer to get on, the anxiety was so much to bare.
I have alot of scarring, and im doing PD. I was originally told i probably couldnt, but it workd! I have a scar that spans from side to side (hip to hip basically) from having a tumor removed as a child, also a c section that goes from my belly button down to my... privates. and ive had a few laproscopic surgeries as well......

[MooseMom]

There are plenty of IHDers who do NxStage at home.  Please go to the forum, or Google NxStage, and see what you think.  If you are in Britain, I think in the last days of Gordon Brown's leadership, he was making strides into making NxStage available there...like gothic said, I'm not sure where you are living.

The time issue is a HUGE reason why many more people are looking into doing D at home.  You have treatments 6 days a week for shorter periods of time, so you get more efficient dialysis.  That's the other main reason people do HD at home.  I'm not on D yet, but I've already spoken to my neph and my transplant coordinator about it (she spent many years as a dialysis nurse), and they both are very pleased with the clinical results presented by patients.  But they have warned me that having a stable home environment is essential, and that it does take care and dedication, so you have to be sure that this is something you want to do.  Many people prefer having control over their treatments, but many others prefer having it all done for them at the clinic.  Do some research and see what you think.

Oh...I see you worked in London but now live on the south coast?  Whereabouts on the coast?  I lived in the UK for 18 years and spent a lot of time on the south coast, so I'd love to know where you are.

[KICKSTART]

Hi , im a brit too ! I do in centre hemo but have been lucky to get an afternoon slot. If you dont really want to do home hemo (someone has to be with you and there is a lot of altering of a room for it ) all i can suggest is try and see if another nearby centre would have a slot for you , its worth asking !  OR actually tell the unit you are going to work p/t so NEED a different slot ..i would !  PD is great the only thing people fail to tell you is that it doesnt last forever , so at some point it would be back to hemo.

[jbeany]

Home hemo (I did nxstage) was a tremendous improvement.  Not only was the freedom to set a personal schedule fabulous, but I felt much better on the more frequent schedule that Nxstage uses. 

If your mom can get through the initial fear of sticking the needles, it's not really that complicated.  I learned how to do my own as well.  It's a lot more awkward one handed, but it's certainly possible.  If you can learn to do it by yourself, then you have even more freedom for scheduling.  When my regular partner couldn't be with me, I could stick my own needles and have another friend stay just in case of emergencies.  Your boyfriend might be able to help, even if he's not the primary assistant. 

Just consider the number of addicts who manage to find tiny veins while completely stoned.  I figured if they could teach themselves that, I could learn to stick a honking big fistula/graft with lessons from a trained nurse!

If you can do basic skills like driving a car, or connecting your dvd to your tv, learning to run a D machine will go fine.  It's scary at first because there's blood involved, but the longer you do it, the less that becomes an issue.  When you get used to doing it on your own, going back to in center is the scary part, but you are used to being the one in complete control.

Good luck!

[del]

We live in Canada and my husband does nocturnal home hemo.  He hooks up for 7 hours 5 nights a week and sleeps through his treatment. it leaves all his days free to do whatever he wants to do. This type of dialysis is much gentler on your body plus you can set your own schedule.  You choose the time you want to go to bed!!  it took us 5 weeks of training to be able to do this. If you are able to do simple tasks you can train for home hemo - it just becomes a routine after a while.  Home hemo is fantastic!!!  Would your boyfriend be willing to train with you. Makes it a lot easier if you have a partner.

[cookie2008]

I do nxstage hd, its so much better than in center, with putting your needles in your boyfriend can be trained or a family member which ever you perfer.   I trained on my machine and when the time came we brought it home, nxstage delivered my supplies bags of fluid, the cartridges, warmer bags, mlas, drain bags, I don't do the pureflow.  The rest of the supplies I get at my center.  I had to buy blood pressure monitor, garbage pail, scale make sure in does kgs.  I be happy to answer anything else just ask away, everyone here on IHD is very friendly and they are like family.  Cookie

[romanyscarlett]

One of the nurses at my centre may have found a solution.

When I got there yesterday she came and sat with me in the waiting room and asked if I was ok. She said that when she first met me I was quite bubbly and happy but now every time she sees me I seem sad and withdrawn and she asked whether I was having problems with the treatment. I told her I was finding the dialysis itself to be ok but I was really struggling with the time slot. I explained that I wanted to get a job after my surgery, that I was losing my whole social life and that it was making me depressed. She told me that there was nothing they could do at that centre because there are no day slots and the waiting list to get onto days was quite long. However, because it was becoming such an issue for me, she is going to contact the other local centre to see if they can fit me into their day shift there.

It might still take a while to get moved but at least I know that the ball is rolling. I spoke to my mother about her learning to stick me and she's not very keen. My boyfriend isn't too eager to learn either. They're worried that I will shout at them if they hurt me. I have a quick temper and I'm known for being very vocal when someone upsets me. They don't want to be on the receiving end of a tirade of expletives if they hit a nerve or miss the fistula. I can't say I blame them, I would be scared to stick me too 

Oh, and MooseMom - I now live in Bournemouth.

[natnnnat]

Oops.  I think if it was me, my DH would say the same thing and so would my father.  They are kind enough to call my shouting "squeaking".  They would say, "No way, I'm not getting squeaked at!"  Well, we are passionate people!  I'm glad to hear that someone at the centre had the eyes to see you weren't prospering and sat down with you.  Hopefully some good will come along.

[carson]

there's nothing as comfy as your own bed, and your own machine humming away all night long!

[romanyscarlett]

I've now been told that I can't move to a different centre until my fistula takes 2 needles on every treatment. At the moment we always try for 2 but it has only ever worked twice so I usually have a single needle with a double pump attachment.

The other centre is a 30 minute drive from my house whereas the one I go to at the moment is a 4 minute walk. I tried explaining to the nurse who runs the centre my reasons for wanting day shifts (increased time with family, ability to get a job, proper sleep pattern etc) and I told her how close I live to her unit so I'd love to stay there.

She said she would give me a day slot if she had one but there simply aren't any available and there is nothing she can do. She said she didn't want me to move because the majority of her patients are very elderly and she likes having some young blood to keep the atmosphere cheerful but she understands my need for a day slot.

So now I just have to wait for my stupid fistula to start working properly. It's over 6 months old so it really shouldn't be refusing 2 needles all the time. I guess I'll keep doing my exercises in the hope it suddenly grows!

[Zog]

I've never seen the double pump attachment.  You may need a fistulagram and some stents and/or revisions.  They would have already ordered a fistulagram at our center after that amount of time.

[Stoday]

If you are only able to take a single needle, maybe that's the reason you are so tired the next day. I guess the machine would only be half as efficient working in that mode rather than using two needles.

I have a twilight slot on MWF and it's my favourite time. But I'm an old man. Maybe if you ask around your center you might find someone who would really like your slot.