Home Daily Hemo With NxStage

Hi all - I’m new to the board here. I’m not on dialysis yet, but it will be coming down the pike soon. My question to all who are doing daily short hemo at home with the NxStage machine - how long did it take you to get back to feeling normal? My job permits me 2 months of short term disability. I am just wondering if two months is enough time or if I will need more than 2 months to get back on my feet after dealing with dialysis. Any info. would be appreciated. Thanks.

Hi and welcome, Catwoman! It’s great that you’re thinking ahead and planning to do home dialysis. You’ll feel so much better! You’ll need fewer drugs! You’ll be able to eat a more normal diet!

Lots of folks can chime in to tell you how long it took them to feel “normal,” again, but I wanted to put in a plug for keeping your job, even if you need to use some unpaid leave under the Family and Medical Leave Act (if your employer is large enough to qualify).

My sense is that if all goes well (and you sound pretty motivated), it may well be possible for you to train and get home in the time you have. But, in case you run into any speedbumps–and there IS a learning curve–please know ahead of time that you are better off in the long run if you avoid permanent disability and hang onto your job, especially if it comes with a health plan. In fact, some centers will only let you do daily home hemo with commercial insurance, since Medicare only pays for 3 treatments per week.

Hi Catwoman and welcome.

I’m not on Nxstage so my Freni was a lot more complicated learning to get the head around, from what I gather. But by doing home hemo ASAP I have always felt good and never stopped anything much after starting dialysis. The thing that took a while to feel normal about is the needling. Unless you have a well developed fistula, needling can be quite a frustrating process to master. After 30 odd months on dialysis , my fistula is still barely noticeable and I was saved from stabbing myself willy nilly by learning to ‘buttonhole’ which has been an absolute blessing.

Make sure you give yourself enough time to sort things out right, though. I had every intention to go straight back to teaching full time after getting home but although I was well enough physically, my priorities changed. I now teach part time. I guess you start to look at life differently once dialysis enters your life. I decided I needed to ‘smell a few more roses’.

Good luck with it all.
Cheers

Hi Catwoman,

In case the term “Buttonhole” is not clear right now, here’s an article we wrote about it: http://www.homedialysis.org/resources/tom/200605/. Incidentally, we do “Topic of the Month” articles, and you can find them under Patient Resources and “Cutting Edge Info.” (http://www.homedialysis.org/resources/reading/. It’s also worth bookmarking the home page of this site, which changes every week–and not just the message boards.

Welcome Catwoman. However, if you want to get good advice I suggest you give up your evil ways and try to make peace with Batman. After all, he’s the guardian of our Gothic City!

“Normal”, what is that? A state of mind that’s constantly changing. You may learn that dialysis is a journey. It always has its ups and downs. But it defintely has more ups when one is doing dialysis at home. When I first started dialysis, it was in-center, and I initially got a burst of energy and was able to keep a pretty robust schedule working. However, in-center dialysis wears on you and your body, and gradually I had to slow down. It wasn’t until three years after I started treatment that I finally was able to start HHD with NxStage. My energy came back almost instantly, but unfortunately I had prqctically closed doen my business and was already so old I wasn’t going to invest in trying to rebuild it.

If possible you should consider nocturnal dialysis with yout NxStage. By dialyzing longer overnight, you will even feel better and might be able to continue with your career. If done correctly, dialysis doesn’t end one’s life, it just becomes part of it. Most of us manage quite nicely, thank you very much! I actually think we’re a pretty good group of people. I’m quite proud to call myself a dialyzor. I know I’m in good company. Grab a seat and welcome to our company!

Welcome Catwoman. I agree with what beachy, Dori and Rich wrote. If Cathy stops by she can tell you how her center allowed her to do her first needle stick and start home hemodialysis training at the initiation of dialysis. Personally I think her experience should be more common but often units want a person to do incenter diaylsis for a while before starting home hemodialysis training. I wish this wasn’t the case but it is usual.

If you can connect now with a unit perhaps you can prepare them to give you a smooth transition to home hemodialysis. In general it takes about 1 month +/- 2 weeks to do the necessary training; often there is a wait for a spot in the training program.

I think there is every reason to think that two months will be enough time if they will train you in that period. I hope you will be at a unit that will work with you to make this work. If you started on incenter and if they had evening hours you could continue to work too. I worked while I was incenter but when you transition to home training you’ll need that time off to train five days a week during business hours.

Echoing Rich I think frequent nocturnal hemodialysis at home is an excellent modality and is very work compatible. However, it seems to be sparsely available - it is only offered by a subset of the few units that offer home dialysis. You didn’t mention your situation with regard to a partner - some units require a partner, some don’t. If you’re in the Seattle area you’re in luck. Outside Jet City it is a question.

Continue to ask us questions. Again echoing Rich this is a journey but many have gone before you and there is no reason to think you can’t join us in living a full life while accommodating CKD5.

Hi Guys - thanks for all your information. I have a company representative of NxStage as a personal contact. He keeps me updated on classes that are starting in the area. I really don’t want to start with in-center and have heard from a couple of people on the Davita board that some people can start right into the NxStage training without doing in-clinic dialysis first. All I can say, is that I will try when that time comes. Right now my creat. is a 3.4. And the thought of losing my job is what worries me the most. I will continue to keep a positive attitude and pray that all goes well. Thanks again for your assistance.

Hi Folks

Hi Catwomen
The training time Bill says is right about a month +/- 2weeks. Some of getting back to normal is how normal are you now? Are you still feeling good and in fair health.? Do you or will you have someone helping the first month or two when you get home? Your age and and job ( office type or a lot of running around, on the road). The main thing is don’t get upset if you a set time frame and things at first don’t seem to be going as smooth,as you would like? Stay on this board and ask as many questions as you want.
Good Luck and try to keep us updated.

bob obrien

QUOTE=catwoman;15651]Hi all - I’m new to the board here. I’m not on dialysis yet, but it will be coming down the pike soon. My question to all who are doing daily short hemo at home with the NxStage machine - how long did it take you to get back to feeling normal? My job permits me 2 months of short term disability. I am just wondering if two months is enough time or if I will need more than 2 months to get back on my feet after dealing with dialysis. Any info. would be appreciated. Thanks.[/QUOTE]

In answer to your questions: Right now I am still feeling pretty good. I work out at the gym three days a week - run five miles every other day. My energy level is pretty darn good. So is my appetite. So in some respects, I guess I’m still doing pretty good.

With regards to your questions about home dialysis - my elder parents live with me. I have an 88 year old and a 78 year old that are more active than a bunch of teenagers. So, more than likely either one of these two will monitor me when I start home dialysis.

The thing that worries me the worse is losing my job once I start dialysis. I have a two month disability that my employer has offered. However, once those two months are up, I have to file for long term disability through the company and my boss wasn’t too happy to hear that I may be out for longer than two months. As the economy is not all that good right now, I hold out as long as I can as I fear once I go out on disability, my job will be eliminated.

I keep my head high and take one day at a time. Can’t do more than that.

Hi Folks
Hi Catwomen

Things sound good for a great start. I was in pretty good health when I started. I did not have any real side effects from tx. The great thing about home is the you get to set your dialysis time. And chck and see if your DR or center offer nocturnal. Nocturnal just means doing dialysis when you sleep. So if you work odd shift you can do it when ever you sleep. I went from sd to nocturnal and it has help a ton just in time which is a major factor in dialysis.

Best To You
bob obrien

[QUOTE=catwoman;15693]In answer to your questions: Right now I am still feeling pretty good. I work out at the gym three days a week - run five miles every other day. My energy level is pretty darn good. So is my appetite. So in some respects, I guess I’m still doing pretty good.

With regards to your questions about home dialysis - my elder parents live with me. I have an 88 year old and a 78 year old that are more active than a bunch of teenagers. So, more than likely either one of these two will monitor me when I start home dialysis.

The thing that worries me the worse is losing my job once I start dialysis. I have a two month disability that my employer has offered. However, once those two months are up, I have to file for long term disability through the company and my boss wasn’t too happy to hear that I may be out for longer than two months. As the economy is not all that good right now, I hold out as long as I can as I fear once I go out on disability, my job will be eliminated.

I keep my head high and take one day at a time. Can’t do more than that.[/QUOTE]

How many employees (full and part-time) does your company have and how long have you worked there? You may be eligible for 12 weeks off (in increments as small as your employer time records allow) under the Family and Medical Leave Act (FMLA). Your employer could require you to use up vacation and sick time before you get to use FMLA leave, if you’re eligible for it and FMLA leave is unpaid. Taking FMLA leave protects your job, seniority, benefits, and access to raises and promotions.

You can read more about the FMLA here:
http://www.dol.gov/dol/topic/benefits-leave/fmla.htm

Are there any aspects of your job that you could do from home using a computer, fax machine and/or cell phone? Many people (including me) telecommute for work and are highly productive. Or could you work part-time while you’re getting started on dialysis and doing training? Training days are usually around 5 hours and some clinics only train 3 days a week. You might be able to work a few hours before or after training if your training schedule could be flexible and on off days if you don’t train 5 days a week. Let your home training nurse know that you want to work. If you have commercial insurance, your dialysis clinic will probably bend over backward to help you keep working because that will let you keep your insurance. It really helps to think outside the box and consider as many options as possible. Good luck!

Catwoman, this is Riverdude here. I forgot my login info.

I’ve been on NxStage through DaVita for two years now. Normal is very relative. I feel much better than three times a week but I’m no where near what I felt with working kidneys. In fact, I’m still not working full time though I do take care of my four year old daughter and eight year old son and continue to be a respectable husband - all which take a lot of energy.

Many argue that one should suffer through three times a week dialysis before going to short term daily or daily nocturnal. To that I say, “phewey!” I believe we all have a right to get the best dialysis right out of the block. I applaud you for looking in to short term daily right out of the block.

Two months should be adequate time to get in the swing of things, but don’t underestimate the amount of work it takes to do short term daily. You have to do the work to benefit from the modality. I would much rather feel like I do and still dialyze six days a week three hours a day than not have the work and be in center. I am not a fan of incenter dialysis. And I can’t place a value on dialyzing in my living room with my children and playing a game or watching a movie.

What might happen with going straight to short term daily as your first hemodialysis modality is that you may be overwhelmed by the amount of work you have to do to dialyze at home. If you ESRD is to the point where you are very sick with uremia, then the work won’t matter because you’ll be so thrilled to not be sick. But, if you go to short term daily without being very sick then the work will most likely surprise you. Just remember that the freedom to dialyze at home and the tremendous health benefits are worth all the hassle.

Good luck, Erich

[quote=catwoman;15651]Hi all - I’m new to the board here. I’m not on dialysis yet, but it will be coming down the pike soon. My question to all who are doing daily short hemo at home with the NxStage machine - how long did it take you to get back to feeling normal?

3 months, stop all meds except supplements.

My job permits me 2 months of short term disability. I am just wondering if two months is enough time or if I will need more than 2 months to get back on my feet after dealing with dialysis. Any info. would be appreciated. Thanks.

Everyone differs, but in most cases of what I’ve saw is that active people who are already are working get back quite fast!

[/quote]