Hi Everyone!

Discussions for Patients, Family, and Friends HD For Patients
1

Hi!
I just joined this Forum today. It was recommended to me by the NxStage Staff. I began learning how to use the NxStage machine this morning. So far I am very impressed. Currently I run 2 hours per day for 6 days/week. I started with the Aksys machine almost a year ago but it didn’t work out sadly. Luckily my unit allowed me to continue daily in-center treatments until they found a new machine, which they finally did recently.

I am required to have a helper at home and my family is stepping in until I can find someone more permanent. This seems to be my biggest hurdle right now. Currently I go to school full time and work part time and my schedule is pretty rigid and makes it harder for my family for the long term. Any suggestions on how or where to find assistance in the home? I asked my Social Worker but she drew a blank since this is new to our unit. I am looking at the state (IL) for possible help. This is one of the times I am not glad to be single and unattached! :lol:

2

May I ask, how did you like Aksys and why didn’t it work out? How many hours a day were your txs? How good was the service?

Some programs do provide a helper or offer a stipend for a helper. One such program is NW Kidney Center in Seattle. You might want to contact their SW and ask them how they do it.

3

The Northwest Kidney Centers provides a stipend to home helpers only for three day a week home hemo. NKC offers three machines for home hemo - the AKsys and the NxStage allow more frequent dialysis but a stippend is not available. The B Braun is available to patients who choose to treat three times a week (or if Medicare allows an additional payment, four times a week) and it is these individuals who have a home helper stippend - $40 - available.

4

The requirement for a helper is more of a CVA thing than anything else. This is what prevented me from going on daily nocturnal hemo for over 2 years until this requirement was dropped where I live. I do my dialysis completely on my own, 6 nights per week. Even if I had a trained helper, I think I would end up setting up and conducting my own treatment anyway. A helper is mostly handy to fetch things once you’re on, if you forget, or if you decide you need a cup of tea, that sort of thing.

I don’t have any reply to your question, but I’m curious. Could you train with a helper and then just do it on your own once you’re comfortable with it? A person really does not need a helper to do this. It’s not that hard - and I use a conventional dialysis machine just like the ones in-centre. Aksys and NxStage are for sissies… just kidding :slight_smile:

The initial days or even the first couple of weeks training can seem like there is a lot to learn, but this is mostly because most of us know nothing about steril technique, working with syringes, saline bags, etc. It all becomes second nature pretty quickly, and then it’s just a matter of gaining confidence in your abilities.

Pierre

5

Hi,
I would be very very happy to do self care at home with the daily hemo but it is mandatory requirement that I have someone with me during entire treatment. I know I would be fine because I have dealt with all these precautions and health issues since birth. In my humble opinion, I think my dialysis center is hindering many people from doing home dialysis because of the requirement to have a helper and back up helper. Not everyone has this availability. If I cannot find someone I sadly will have to go back to in-center 3x/week. What a big step backwards. I have been asking my social worker and anyone I can at my Center for help with this but no one has any ideas and I get the impression that I either sink or swim with this daily hemo program. I am looking into other options but only know of a couple to try. Like most of you I already do everything for myself with dialysis including sticking myself and recording and set up and tear down and medicines. I agree this could be done alone with a phone nearby. Thank you for all your inputs!
Take care,
Erik :slight_smile:

6

Best of luck Erik. I sure hope you find a way.
Pierre

7

Do you get either Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI) from Social Security? If so and you’re able to work more hours, you may be able to take advantage of a little used work incentive called “impairment related work expenses.” This work incentive is meant to keep people with expenses related to their disability from being penalized for making enough money to pay for them. The way it works is that any month you have work earnings and you have expenses (like what you paid for a home hemo helper, drugs or other medical bills you paid out of pocket, etc.), you show the receipt for those expenses to your SSA representative and he/she can deduct your documented expenses from your earnings before deciding whether you earned too much to get a disability check.

You say you’re going to school. Would one of your classmates or another student where you’re going to school be a potential home hemo partner? He/she could make a little exra money while studying. What about paying a family member to help you? It might seem less of a burden if there was cash involved. Maybe one of the staff affiliated at your clinic or someone at another clinic might want to make a little extra money. If you go to a chuch, perhaps someone who is retired or disabled might want to make a little extra. The big thing is to find someone who is reasonably intelligent, will follow directions, and – most importantly – is dependable.

8

DO you have an extra room? Somebody said they traded rent for help with dialysis, so that’s another free option if you have the space for it…

9

I see your still working hard towards your career and you want to take it as fullest as you want. You have the will, strength, and determination to just do that, but also see that you wanna feel completely free away from family. However, dealing with this added weight(kidney disease) to your lifestyle can and will make things a bit difficult and always you will need the support from the family, friends and renal community. We can’t live without them, no matter how long or how old we get with this disease we wll always need the support.

If your father or mother or both are retired you might want to work something out with them and compesate them for the help they give you. …other members in the family may be willingly to help but in most cases father and mother always want to be there for their kids.

Maybe along the way in your career life you may meet your future companion and down the road you will already be married with a fine job and nice family to care for you.

Best luck in your future!

10

Spyke,

The idea of dialyzing by yourself is a difficult issue for the dialysis facilities. I think that there are many many situations in which it is safe, and you sound like one of them. However, there are some patients who would not be safe dialyzing at home with no one else there.

The dialysis field tends to paint with a broad brush, and we tend to not make exceptions for individuals. None of the dialysis machine are currently labeled for use without a helper, and the issue for the dialysis facility is liability. If something happened to a patient at home, there is a good chance the dialysis facility would be held financially responsible if a case went to court.

Have you talked with your facility administrator about allowing you to sign a waiver, that would release them of liability if something happened that was out of thier control? It is a long shot, but worth asking for.

As far as I know, NW Kidney Center is the last place that still pays a nominal amount for home helpers. The hospital I used to work for did until they were purchased by a big company.

Congratulations on learining the NxStage. It is a great machine, and you will do well.

Curt

11

Hi all!
Well I am in my last week of training on the NxStage machine and doing well. My chemistries are great too! I will be meeting with people from HHS:Office of Rehab. Services next week and find out if they can help me with locating and paying for an assistant. They have a network they can draw from and I can also refer people to them to be added to be paid as well if I do not wish to use their recommendations. As for now, my Mom is going to be my helper when she gets home from work and my little sister will be her back up. I hope to get a person from the State by the time school starts in October. I cannot afford to pay anyone at this time out of pocket. I have only SSDI as income right now and that goes towards a lot as it is. It will all work out in the end. I just have to continue to be patient. Thank you for all of your suggestions! I look forward to talking with you again.
Take care,
Erik :smiley:

12

Hi Spyke,
Since you get SSDI, you may take advantage of what I believe is a little known or used work incentive program called “impairment related work expenses” to pay your assistant. If you work to earn income and you have an expense (say, the cost of a home assistant or out-of-pocket bills you pay for drugs, doctors, dialysis, hospitals, etc.) in the month you earn that income, SSA can deduct those “impairment related expenses” that allow you to be able to work from your earned income before deciding whether you earned too much to your full disability check.

Example:
You get 9 months to attempt work without risking your SSDI check. You don’t use any of your 9 trial work period (TWP) months in 2005 if your gross income is less than $590 a month.

After you’ve used all 9 trial work months you can have a gross income of $830 a month in 2005 before Social Security can stop your SSDI check. This amount is called “substantial gainful activity (SGA).” It goes up every year.

Social Security can count expenses you pay in a month you worked as “impairment related work expenses (IRWE)” if you wouldn’t be able to work without spending the money on those things. Some things that could be counted include what you actually pay out-of-pocket for drugs, medical expenses, equipment, or a helper for home dialysis that keeps you healthier and frees your days for work.

Spyke pays Mary, another student (or someone with a disability or someone trying to get off welfare), $10 an hour to be his home dialysis helper 5 days a week for 2.5 hours a day. Mary earns $125 a week or $500 a month. If these expenses are approved by SSA as IRWE. Spyke can make $829 + $600 from work and keep getting his full SSDI check. He can make more if he has to pay other expenses out of his pocket for his kidney disease.

If Mary gets SSDI and makes $500, this is less than the $590 that would use a month of trial work. Mary still has all 9 trial work months and gets her full SSDI check plus $500 (or what’s left after taxes) to spend on things that she wants or needs to buy.

Both Mary and Spyke have added disposable income to enjoy life a little more.

This example doesn’t include any tax withholding for Mary which may be Spyke’s responsibility – or not. Spyke, if you’re interested in this, you should talk with your tax advisor or the IRS about this scenario and whether Mary would be considered your “employee.”

13

Erik, that’s great! You got it all ironed out, you da man dude! 8)

Also wanted to point out that if your in college fulltime your likely elegible for insurance from your parents benefits and also your elegible for disability support services from your school. You may not need to pay for your classes, only the materials needed for the classes…

Anyway, keep it! Take care…

14

Hey Pierre!
I’m on dialysis…could you get me a cup of Tea! LOL on Dx.

You’ve got it right, mon… I can actually reach my frig and if I had patience and the desire I could brew me a cup.
But no, for me there is no need for help and there is no one home when I dialyze anyway…I’ve got my phone for an emerency but never used it.
It’s not for everyone but if I had to, I would simply tell a falsehood to whomever and do it my way in the privacy of my own home…
I have dialyzed on my own on every one of these machines… I do not believe they are obstacles to self-care: Baxter 560?, Cobe Century 3, Fresinius 2008, H,K, Aksys. I wish these providers would lighten up…I’d sign any waiver made to get them off my back and let me do what I want.
It may be changing now and certainly it feels that way with some of the people here, but the history of Hemodialysis in this country has been one of near slavery… I mean that …BMA(out of Boston, bought by Fresenious)was typical of many Dialysis providers and one of the early company models where it was their way or the highway. And they did not take kindly to anyone rocking THEIR boat. I actually think they developed in home dialysis to get me out of their Centers… :stuck_out_tongue:

Anyway, Do what ever you need to do, Erik, whatever works for you, I say good on ya ! If I was in your town, I’d come over and watch TV while you dialyze, that is if you had satellite tv, of course.
Guillaume

15

I have to agree with the thinking that the providers should lighten up. Things are changing a little but there is a long way to go. There are still very few places that even offer home hemo were just a small minority of the “lucky” ones who have a choice.