How many of you who do home hemo have time to work a full-time job?
I’m thinking that the amount of time it takes to set up to run and to clean up afterwards won’t jive with my work schedule. I generally remember a post on another site detailing the steps and time involved and I think it was a lot. Yes?
Karen
I don’t work, but this depends very much on the individual. Not in terms of willpower or willingness to work but rather in ability to keep up a regular full-time work schedule at the same time as having to dialyze. I’m at home, but I probably put in as much work (unpaid, volunteer type work. plus other daily activities) in a day as most people who work in an office. But if I don’t feel good on any particular day, I can just take it easy. In today’s working world, there are extremely high demands on the average worker, and for many, this might not be compatible with the uncertainties and unpredictability of being on dialysis. Not everyone has the same health on dialysis, and even for those who have good health, things happen.
Now, in terms of time, yes, it’s doable. Let’s say you work normal daytime hours. You come home, have supper, relax a bit. Also let’s assume you use a conventional dialysis machine, which probably takes an hour or so more. So, you start getting your stuff ready at 7, and you’re totally done at 11. Other than the 2 hours on dialysis, you have some time during setup to answer email, etc., while some things are done by the machine unattended (as long as you’re within earshot if an alarm goes off). If you use a NxStage or Aksys, you can probably shave an hour off prep time. I don’t count post-treatment time, because no matter what machine you use, you’re going to need a half hour before you’re totally free of the needles (holding time, and on home hemo, you can only hold one site at a time, not both like at the dialysis centre). After that, it’s really only a matter of the machine doing its thing for an hour or so. You only have to be around to turn the R/O off once the disinfection is done - but you can be doing other things unrelated to dialysis in the meantime.
But keep in mind that you have to do this almost every single night except one or maybe two nights to reap the health and dietary benefits of short daily hemo.
For daily nocturnal hemo, you get more bang for your buck in terms of prep time vs treatment time - a lot more. But, the price you pay is that you might not always sleep as well or as comfortably. Is it compatible with regular work? Maybe, if your employer is really flexible. With nocturnal, generally-speaking, you can be on tx from 6 to 8 hours. However, practically-speaking, you have to balance things in terms of how late you want to get on (before you get too sleepy to do it), and how early you want to get off. Most people would probably not want to take themselves off at 4 am every morning. But with nocturnal, you do have every day free of dialysis. There is going to be the occasional night when something goes wrong and you lose some sleep time.
Now, that’s not counting monthly clinic appointments, appointments for fistulagrams, dialyzing in-centre for fistula measurment, etc., being home or otherwise arranging to receive supply deliveries, being home when technicians have to call for unscheduled problems or for regular maintenance, etc.
I always seem to be playing devil’s advocate on this forum, but having done in-centre hemo, short daily and daily nocturnal, all for significant lengths of time, I almost think that doing in-centre hemo 3 times per week in the evenings is the method which is most compatible with full-time work in terms of time alone - although it can’t compare to daily hemo in other ways. Most people feel better and have more energy on daily hemo than conventional hemo in centre.
Pierre
Thanks Pierre! You can always be counted on for in-depth, well thought-out posts. You’re a gem!
I leave for work at 7:00 a.m. and get home at 6:45 p.m., so I really only have 4 hours every evening before bedtime. Short daily would eat that all up, so for 5 days a week it would be sleep, work, dialyze, sleep…
You make some great points about home hemo that my neph conveniently glossed over when he was giving me “all the facts.” I’m sure he has my best health in mind, but he was obviously not considering the whole ME. I have to work and, as much as possible, dialysis will have to be made to fit into the schedule. The lawyers I work for have been surprisingly flexible, but then I’m reliably unreliable - that is, they can plan on when I have to leave early for dialysis. The kind of schedule you describe wouldn’t work for them.
I should probably consider PD. Thanks again 
Karen
Thanks Karen. I appreciate your comment about my posts.
Oddly enough, I got into home hemo after I enquired about switching to PD. Once I got the presentation at the home dialysis unit and I learned that the waiting list for home hemo wasn’t that long, I decided to stick with the devil I knew (hemo) rather than experiment with something new (PD).
I do think that PD is a good solution for those who can do it though. I would say it offers the best chances of being able to continue working full-time, if you still have some good residual kidney function.
Pierre
Hi Karen
I think working full time has a lot to do with the type of job you do, your fitness levels and your commitment (not to mention the money side of things). I am having time off from my job as a Primary school teacher and although I am really missing the money, at this stage I feel getting my health and fitness back and having time for me is my top priority.
I went back to work late last year after starting home hemo but found I had lost my edge to cope with the daily challenges of being under scrutiny from so many little (and big ) people all the time. My teaching was suffering and I was so tired (from lack of sleep on Nocturnal ). I started feeling sorry for myself which I didn’t enjoy. At present I am loving getting things sorted and looking after myself properly. My job was very stressful and I bet yours is too! I undersestimated all those things Pierre has mentioned and they do impact on your days.
You need a lot of inner strength to keep all the balls bouncing, it can be done but be kind to yourself above all else.
Cheers 8)
Beachy, That was very well said and very truthful.
Living with a chronic disease and handling most full time jobs don’t mix…
People with chronic ilnesses do better on jobs that don’t deal with too much stress/pressure…
Plain simple…
Thanks Marty and Gus
Might need to use your kind words if the Dept of Education wants to look into medically retiring me early! I am not quite ready to "pull the pin " fully, not ready to go back to work ( even part time ) and not quite sure I want to not work either. Waiting for “divine inspiration”.
Cheers 8)
I’m not a patient, so I don’t know how I’d feel if my kidneys failed. However, I worked with patients for many years and I continue to talk with patients most days. How many hours any patient can work or the types of jobs patients can do is very individual just like the employer’s support is individual. No one – patient, professional, or employer – can know what any patient has the capacity or motivation to do but that person.
There were a number of people that didn’t work or worked a few hours here and there so they didn’t have to worry about losing their Social Security Disability Insurance checks. Others chose to keep their jobs and some even went back to work. I was happy when my patients were doing anything that made them feel worthwhile and keep them from being as depressed as people often got when they didn’t work or have any kind of rewarding activity. I had patients who worked in blue collar and white collar jobs. Most of the working patients did home PD or HD, but some full-time workers at my old clinic did dialysis early shift on TTHS and went to work afterward or went to work and came to an evening shift on MWF.
MEI conducted a study in 1994 with over 350 randomly sampled dialysis patients. We learned that 23% of patients were working and another 21% who were unemployed said they were both willing and able to work. There are a number of factors that are related to whether patients work including years of education, work history, physical functioning, other health conditions, and support from staff, MD, family and friends. So whatever I do, I feel it is my obligation to lend my support and encouragement to patients who want to work and never discourage them from reaching for their dreams.
By the way, I’ve worked with people with kidney disease long enough to see blatant and not so obvious employment discrimination. Some employers tell you they have your best interests at heart when they encourage you to take disability. Maybe so and maybe they don’t understand that you can be productive or maybe they don’t want to be liable for dialysis charges. You’re protected from workplace discrimination and have the right to workplace accommodation under the Americans with Disabilities Act if your company has 15 or more employees. If you need to take leave without pay to get your health stabilized or even to take some time off to make it to training or clinic appointments, the Family and Medical Leave Act protects you if you’ve worked the right amount of time and your employer has 50 employees. Read about this in Employment: A Kidney Patient’s Guide to Working and Paying for Treatment under free materials at http://www.lifeoptions.org.
One thing I’ve noticed is that there are plenty of examples of people on dialysis who work, but these are often only snapshots of people’s lives at a given moment in time rather than examples of the longer term. It’s easy to find examples of people working at any specific time, but in my experience, it’s almost never a stable long-term situation for any individual. I’ve known so many people who were proud to tell others they are working, but see them again 6, 12 or 24 months down the road, and they aren’t working any more. Some people with jobs such as teachers seem to have a cycle where they work, then they are on extended sick leave or short term disability for a while, then they work again… until they finally decide to pack it in.
It’s very difficult to take care of oneself properly, have the treatments plus all the “extras”, and keep a full-time job, or even a part-time job for that matter. I wouldn’t discourage anyone from wanting to work, but I would say, do it while making sure that you retain the ability to stop if and when it becomes necessary… and don’t make working your only source of self-worth. Being on dialysis is easily itself the equivalent of having a significant part-time job (20 hours/week when doing conventional hemo, more when doing daily home hemo). In that sense, how would most healthy people handle having household/family responsibilities, a 20 hour/week part-time job with compulsory attendance, in addition to a demanding full-time job, plus unpredictable medical problems which require hospital visits on short notice every once in a while?
It’s important to also realize that many people are on dialysis because another disease put them there, and that disease continues to cause other problems. This is the case with diabetes for some, and for those who had a immune-system mediated kidney disease like scleroderma, HSP, etc. This is one reason why not everybody is the same.
Pierre
Hi
How do you define work? I did work full time up 98, after that was force by medical problem to go medicare. It was the worst time in my life. I was geared to work and my idea of work was , “you go somewhere and do something” and got paid. It took a while for me to understand that being a homemaker is a real job and helping my wife who works a full time job. My wife thanks me often and at times can’t see how I can so many things done. But it up to each person owns needs and how they define work.
bobeleanor 
I think there’s all kinds of jobs out there, could be volunteer work, could be a student, could be a homemaker, could be a professional career…jobs are everywhere!
Well it’s been 11 years for me. I started working after being unemployed for the first three + years on dialysis then I joined the Carpenters Union in January 1995. I think union work is a great fit for people on dialysis - it is shift work, you’re just a cog in the machine. If I can’t take a shift one of my union brothers should be able to step in and do the job - as cogs we’re suppose to be interchangeable. This is how I am able to take months off at a time to travel around the World or days off to go to DC.
Do not ever assume you can’t do something without trying for yourself. When I started in the Union as a lowly level one I had the most physical duty - no one on dialysis goes to the gym for an eight hour workout five times a week but as a level one that’s what it felt like setting up a tradeshow: an eight hour workout. I credit my hard physical work with turning my ESRD downward spiral into an upward spiral.
The harder I worked, the better I ate, the better I slept, the better I felt about myself - which then meant I could work harder and the cycle would continue and reinforce itself. I remember my first shift - 2 am at the old Kingdome in Seattle carpeting the 100 level concourse for the Seattle Boat Show. By 8 am I thought I was going to die but I finished the shift and I came back the next day and the day after that.
Now I have worked my way up to the highest level in the union – Journeyman – and I sweat a lot less (I spend my days at a computer designing convention floor layouts or show graphics and/or on my feet producing those graphics) so I have to go to the park and walk the dog, or the gym to lift weights or do yoga to get my exercise. But it was those four years working hard shifts that took me to another level of health.
Now as Pierre says there is still those normal life duties: paying bills, feeding myself, doing laundry – I live alone so there is no one but me washing my socks or taking care of the dog. Sure it’s a challenge - my house is not dusted; the floors remain unswept most of the time. Sometimes it feels like I’m on a work/dialysis/sleep treadmill and when I am in the midst of the busy season I just remember why I’m doing it and I schedule some sort of carrot – travel or an electronic toy (I just got a 60gb video iPod and it is so cool).
So where do I come up short? Friendships. It is hard to keep in touch with my normal circle of friends. I went and watched the Super Bowl with buddies but we use to see each other all the time: for a round of golf or a game of horse. I have a friend who comes over during dialysis – she’ll watch a movie with me or make me dinner – but I can’t say I’m active in the dating scene. I rarely go to the movies, I haven’t been skiing in over two years, camping since I don’t know when and I’m not one for chatty phone calls. But hey if you want spend a couple weeks traveling around Peru then let’s talk.
Wow! There’s so much good information in your posts, so much to think about and comment on, I don’t know where to begin to address it all.
Beachy, you talked about taking time to get your health and fitness back and sorting things out. Gee, would I love do to that! Maybe if/when I switch to self-care I’ll take a short leave of absence during the adjustment period. That’s a great idea!
Bill, as if life isn’t carrot enough, my carrot is time with my husband. Thanks for helping me get that in focus. Our work schedules don’t coincide, even our “weekends” are on different days. Add in dialysis and I don’t see enough of my man. Now I just have to redefine my carrot to include a future with my husband. To insure the most time (as in years) with my man, I need to take good care of myself - and that’s what I’ve got to balance with the necessity of working. I’m glad you’ve found a balance that works for you, though I hope someday to hear you’ve found a life-long travel partner.
Gus emphasized the importance of a low stress job. My job has evolved into something so low stress that when my paycheck comes it almost feels criminal to accept it. That’s one of the reasons I don’t want to give it up, jobs as cushy as this one are hard to find. Honestly though, it’s not as fulfilling as it used to be because I do take pride in my work and like to earn my keep.
Pierre’s experience has showed him that down the line it’s harder for us to keep working for one reason or another, making me think I should work as much as I can, while I can.
Bobeleanor, it would be hard for me to adjust to being a homemaker too. From the man’s perspective, you were used to being the bread winner. From the woman’s perspective, I’m afraid to be dependant upon someone else. Worse than that, I think, would be to be dependant upon Medicare/Social Security. Obviously you’ve found a way to make it work and also found satisfaction in what you’re doing.
Beth, your patients were very lucky to have you. I’m not worried about employment discrimination in my job. It’s hard to get fired from a law firm even for cause - lawyers are very careful creatures when it comes to following the law.
Bottom line - sounds like home hemo is more of a full-time job so I should switch to PD, take a little time off, and then get back to work until it’s obvious I can’t.
Thanks guys,
Karen
I will admit that I am new to diaylsis, but I do hold a full time job, and I work 10 hr. days.
I live in Alvin and work in Corpus Christi, Texas. I leave on Sunday and return on Thursday night. I do my dialysis on the three days that I’m in Alvin, for now. I have had no problems with the way things are going as of yet.
My prescriptions changed as of today. I will now be doing it 4 days a week. So I will be transporting it to Corpus with me. I use the Nxstage System 1 machine and really like it.
Hi Troy,
I would be real interested in hearing how you were able to transition into dialysis … and continue working? Do I understand you correctly that you started in center then today switched to the NxStage?
On this Board we should talk about how people can keep working as they transition from CKD 1 through to CKD 3 and 4 and then to CKD 5 and to some form of renal replacement. What about habilitation? How can I keep working? Why the high washout rate that Pierre pointed out? I think that when I read this Board my belief is reinforced: there are too many lost opportunities because of Chronic Under Dialysis. Fight the CUD.
Heya Troy,
glad you found the NxStage System One to be very useful for your lifestyle…
How did you manage to come about it?
Does your job involve alot of labor? Things like lifting heavy stuff of that sort? Or does it only involve decision making, perhaps just management?
Did you have to start doing things differently right after starting dialysis?
How long have you been on dialysis?
What’sthe nicest thing you like about NxStage System One?
Sorry for alot of awful questions… :oops:
Gentlemen,
I am sorry that it has taken so long to reply to your post. But my weekend has been busy on the water fishing in tournaments, did mention that they are kayak tournaments. I have one on the 5th and one on the 11th this month as well.
I will answer Peckham’s questions first.
As far as a transition into dialysis, well I took five days of vacation for training then went back to work. Went back to the lab the following Friday did a treatment and took my machine home and have not looked back. I started treatment with the NxStage machine on December 12th of 2005. My prescription has changed since I started I am now doing treatments with a spacing of no more than three days apart, about 4 times a week.
Gus,
how’s it going my friend? When I get back up into central Texas I will pick you up some of that buffalo jerky that we talked about.
Now as for your questions.
Well I did not even know that it existed until Doctor Vu said something about it. I was going to do PD on the road.
As for my job, well let’s see, I have to answer yes to all of those questions. I do all the labor, unless I get lucky and the scheduler gives me a helper. Lifting anything from a peace of paper to 150# anode, and not just 1 either and no not more than 1 at a time. As for the rest of the question, I am the entire department, I do it all myself. I maintain four facilities for Flint Hills Resources in Corpus Christi, Texas. As for doing things different define different, I have not slowed down one bit except for when I am actually sitting still then I tend to fall asleep, if I have nothing to keep me occupied. I have been on dialysis less than three months as of today. I will reach that mark on the 12th. As for the nicest thing about it, I’m still working on that one. I hate it for what it is but understand that it is a nessary evil untill sometime in the future when things may change.
Doc VU was asked to right up an article for the Houston Chronicle as he asked my to sent him some quotes that he could use in the article. He said I was going to be a poster boy for them. I think if anyone should be a poster boy for it should be you.
Regarding heavy lifting, there is no published research that I’ve been able to find that provides a specific weight limit over which it is harmful to vascular accesses. I think patients are told after they get a vascular access not to lift over x amount of weight but no one tells them that this is while the access is healing or when they can resume lifting normal or even heavier things.
I think that this weight lifting prohibition has been passed down from professional to professional and to patients without any research to back it up. Obviously anyone who lifts anything should never allow the weight of that object to rest on their dialysis access. This would disrupt the flow and risk clotting the access. However, I’ve known several patients who were exercisers and weight lifters who never had a problem with their dialysis access. Some actually believe that the more exercise you do with your arms, the better your dialysis access will be.
This is an important area for research that has been overlooked, probably because of the belief that people on dialysis are too debilitated to lift heavy things anyway. With more and better dialysis and improvement in anemia management, this may no longer be the case.