Working While on Dialysis

[mrcjjjekel]

Can someone on dialysis have a productive work life?  I have been medically retired from the Army because of my failing kidney functions, I have PKD.  I will have to eventually have to start dialysis.  I retired in December 2006, and have been going to school to get my MA degree and have been looking for work.  I have not been successful.  What do I tell my future employer's and what can or can't a person on PD/HD do?  Are they limited on what they can lift?  My doctor is pushing for PD.  Thanks.
Charles

[kitkatz]

I work full time as a teacher of special education children. So the answer is yes, you can lead a work filled productive life. 

I would say get used to the tired feeling and learn to take care of yourself really well.

[RichardMEL]

I would say yes you can but it really depends on a person's specific situation and what they can handle with where they are at. I dialyse Tuesday/Thursday/Saturday and work Monday-Friday (mornings on Tues/Thurs before I dialyse). I have a very understanding boss though that if some mornings I just don't have the energy and show up late.. they don't hassle me about it.. but also I think because they know I do the work when it needs doing. I also managed to get a good job that was not full time before I started dialysis which was really helpful as it allowed me the flexibility to do both.

Some days I have more energy than others - you will have to expect something like that but I'm sure you'd be ok.

[Meinuk]

I have PKD, have had less <15% GFR for two years and started dialysis in January `07.  I still work 40 - 50 hours a week, and dialize M/W/F from 6-10 pm.  It can be done.  I have to say that my employer is wonderful, and has adjusted my hours according to how I feel.  Some mornings I work from home and sometimes I do work on weekends - but all in all, we've taken a terrible situation and made it work.

All in all each situation is unique - Sometimes, it may work to start out part time and then build up to a full time job depending on how you feel.  Of course my situation will change in the fall when I start Nxstage - I fully intend to be able to work "normal" hours - until I get my transplant that is...

[st789]

I think the key is taking care of yourself in term of energy.

Mgm. is the key here.

[keefer51]

Yes you can. When i was on dialysis in 92 i worked full time. I lived about an hour away from work and it was hard to do. Now i am older and am too tired to work. I just don't have the energy.

[tamara]

No matter how you feel I still believe alot of it has to do with the understanding of your employer. I was working when I first started dialysis, but my Boss didn't give me much of a chance but leave, doing everything he could except anything illegal to make me leave. But yet the people I work for now are great, very understanding , they treat me as a person, and tell me know matter what health is most important. If I would have been working for my current employer when I started dialysis, I believe I wouldn't have had to leave.

It takes time and understanding for dialysis and work to mingle. Also think that your body needs to adjust to the different levels of toxins and the effects of dialysis on the body.Also as Kitkatz said in her post take care of yourself !
 

[RichardMEL]

tamara.. my bosses are just like that... they always say to me "Look if you don't feel too good. Don't come in/go home" etc... with them it's less about the work and more about how I am doing which is really wonderful to know I have that support and understanding that if I am not doing so well the last thing I need to worry about is work (but I do anyway).

The other thing I wanted to say was that working if you are able is a wonderful thing to do. Not only do you get income to pay the bills etc BUT it's also a healthy distraction from thinking too much about dialysis, kidney disease and anything else worrying you in life. I know if I just sat at home all week when not dialysing I'd go out of my brain on boredom and thinking about my condition. When I'm working I'm interacting with the guys I work with and exercising my brain in a productive way(well sometimes!) and the day goes a lot quicker. Obviously having a supportive employer and co-workers (who are always asking how I'm doing etc) is great. I imagine it wouldn't be so good if I had a boss that wanted to get rid of me because they saw me as a liability or something (like Tamara's first boss seems to have been).

Oh yeah, I'm typing this at work!!! LOL 

[brenda]

I have always worked full time while on hemo. Guess it's kinda what keeps me going. My employer did not even know I was on dialysis until I had surgery last year. None of my previous employers knew at all. As long as I am reliable and there everyday (which I am) I see no need to tell anybody anything. I just wear elbow length tops all the time.

[Zach]

Each person is different, but I've been working for the last 23 years while on hemodialysis.  At first they were different kinds of jobs ... part time to allow my body to get use to dialysis.

Since 1987 I've had my own company and work full time and then some.  But the boss does take an occasional quick nap in the afternoon.    

[brenda]

Must be nice Z. I do come home at lunch and more often than not I grab a half hour snooze. Makes me feel so much better.

[st789]

Is nice to have employers understand your needs and not discriminate.

Nap in the afternoon.

[RichardMEL]

Brenda you bring up a very good point - do you tell the employer or not?

I wrestled with this situation myself when looking for my current job (3-4 years ago) and previously when I'd been diagnosed.

I decided that honesty was the best policy. I thought about it from their point of view - as in you have an employee who seems fine and then all of a sudden needs days off, surgery, is tired/can't work sometimes etc.... and all this with no warning whatsoever? I think I'd be pretty pissed if someone KNEW that kind of thing could be coming up and not telling me.

So I said right from the outset what my situation was and might likely be at some point which I then didn't know.

I had a great response (luckily) and a lot of support and I do honestly think they apprieciated the "heads up" so that when i got the word I would be starting dialysis I could tell the boss "OK it's time now.." and he was quite OK about it and we worked around any work issues in terms of the times I wouldn't be in the office because I'd be at the unit.

I can certainly understand one wanting to keep a personal thing like that private and not tell.. I was also concerned if I wasn't pushed out the door somewhat because of my illness that I might be considered some kind of charity and be fussed over (just as bad, in a different way I feel) - I just want to be treated normally with the understanding that 2 days a week (for them) I'm not around in the afternoon. So far everyone's been great and I don't really care anymore who knows... plus it stops rumours about me being a druggie coming up when they see the needle marks on my arm they know it's not because I'm shooting up in the back alley at lunchtime...

I guess it comes down to everyone's personal preferences and how they feel about disclosing their situation to others. I have found being upfront really works.. and I am sure that if/when THE CALL comes for the transplant or if something goes downhill and I can't work for some time they will understand totally because they've kind of been along for the ride for a few years already.

Everyone's different though.

[boxman55]

I have been on Hemo since 8-06 I drive 45 min each way to work and back and have dialysis M-W-F from 5:30 till 9PM Being tired is the hardest thing to deal with. I nap at lunch for 40-50 min that helps. Some days work is fine and some I wish I was done. Give it a try you can always stop. Boxman55

[SpeedFleX]

yeah you can work normal if you feel up to it. I sometimes find it hard to get up, go to School (Apprenticeship?). School start at 7:30am, so I get up at 6:30am, it ends at 5:30pm and I get on Dialysis about 6:30pm + 5 h which is 11:30pm then takes about 10 minutes till it stops bleeding, I get back to my house about at 0:10am make something to eat and then got to bed around 1:30am. Toooo bad red bull is high on potassium^^ But it works out in the end, I get good grades make a little money and I am a happy person. A Life Hacker you know how we do!

[goofynina]

yeah you can work normal if you feel up to it. I sometimes find it hard to get up, go to School (Apprenticeship?). School start at 7:30am, so I get up at 6:30am, it ends at 5:30pm and I get on Dialysis about 6:30pm + 5 h which is 11:30pm then takes about 10 minutes till it stops bleeding, I get back to my house about at 0:10am make something to eat and then got to bed around 1:30am. Toooo bad red bull is high on potassium^^ But it works out in the end, I get good grades make a little money and I am a happy person. A Life Hacker you know how we do!

Good for you SpeedFlex, glad you got the routine working for YOU   nice hearing from you again, hope all is well,  keep on keepin' on my friend and most importantly KEEP IN TOUCH 

[kitkatz]

My work day routine is similar only I have earlier hours for diaaysis. I get up at 5:45a.m. and am up, showered, and dressed, out the door at 6:30a.m. Work with the kids starts at 7:30a.m.. I am out by 2p.m. and then run home, change clothes and am at the center from 3 to 7:30p.m.  I often get home around 8 p.m. Then it is on the computer, read the mail, come to IHD.com and check in.Read a book.  In bed by 11p.m. 

[Razman]

I want to thank mrcjjjekel  for starting the question and  EVERYONE  who answered.  I am also not on dialysis YET and the queston of working has been on my mind.   My goal is to never stop ( and I said that to my doctor ).  If you stop it's harder to get going again & I think that daily nocturnal  HEMO is the best ( next to a transplant).  I've talked to a patient that did this , nurses and even doctors and they all agree.  I hope that I can do it.   Has anyone else done nocturnal ?

[KT0930]

Wow, my day starts really early, I guess. However, it also ends pretty early.

I get up at 4:30, set up my cycler for that night, get myself ready, get the kid up, and have us both out the door by 6:45 a.m. I'm at work around 7:45, work until 5:00, come home, make dinner, clean up and am hooked up to the cycler by 7:30 most weeknights.

Raz, I don't do nocturnal hemo, but the cycler allows my days to be dialysis-free and I LOVE it!

[jbeany]

I've actually got more energy now that I'm on dialysis, and I'm now working and doing far more than I did before I started.  I was on disability for the last 8 years, and barely had enough energy to manage to go shopping once every 2 weeks for groceries.  Now I work 2 days a week, and run into town to visit and shop usually once a week.  I've got energy for more, just not enough money to shop more than that!

Part of the energy comes from doing home hemo on the NxStage.  I feel a lot better with more frequent dialysis than I did with in-center.  Just remember, if you are thinking about working, or planning to work while starting dialysis, that the first couple of months can be rougher than the rest.  You are likely going to be pretty wiped out until they figure out a real dry weight, and until your body gets used to the process.  If you can take some time off at the very beginning and just focus on resting then, it will get easier.

[Zach]

I've actually got more energy now that I'm on dialysis, and I'm now working and doing far more than I did before I started.  I was on disability for the last 8 years, and barely had enough energy to manage to go shopping once every 2 weeks for groceries.  Now I work 2 days a week, and run into town to visit and shop usually once a week.  I've got energy for more, just not enough money to shop more than that!

Part of the energy comes from doing home hemo on the NxStage.  I feel a lot better with more frequent dialysis than I did with in-center.  Just remember, if you are thinking about working, or planning to work while starting dialysis, that the first couple of months can be rougher than the rest.  You are likely going to be pretty wiped out until they figure out a real dry weight, and until your body gets used to the process.  If you can take some time off at the very beginning and just focus on resting then, it will get easier.

And don't forget the exercise program you do --40 minutes a day!  Right?
 

[jbeany]

Hmmm - more like 30 lately, I think, but usually 6 days a week, sometimes 7.  I do a lot of walking the 2 days I work ,too, so I'm hoping that counts a bit as well!

[MattyBoy100]

I'm a supervisor at a petrol station for a supermarket.  On Mon, Weds and Fridays, I start work at 630am, finishing at 345 pm.  I go home to get changed and go to dialysis.  I'm usually on the machine by 5pm and finish at about 930pm and home for 10pm.

I was called into Emergency on my first day at work having transferred from my old store.  I couldn't avoid telling my bosses because of that.  I was in intensive care for a while and missed 6 weeks at work.  During this time, my boss called my family and told them not to worry about my job and just to come back (if I wanted to) when I was ready.  This was in June last year.  Since then, I have never had a day off work and it really annoys me when I see people go off work with a cold or something stupid like that or kids complaining coz they don't feel well and really it's coz they're lazy and don't want to work!

My immediate boss is very understanding and accommodates me in the schedules so that after a dialysis day, I either have the day off or am scheduled for a late shift starting in the afternoon.  This benefits me coz I feel lousy after dialysis and a good night's rest helps me bounce back.

I am on the transplant list here in the UK and my bosses know that I can be called away without notice.  I made sure that they all know this and wrote letters to the Personnel Dept ensuring it won't come as a suprise when I go for my transplant.

I enjoy the interaction with my work mates.  If I wasn't working, I would go crazy sitting at home and my head would spin thinking about my condition and all it entails.  I don't really have time for that. 

I do wish I had more free time though.  I work 2 late shifts and spend 3 evenings at dialysis so I only have 2 evenings free a week.  My social life isn't great but I guess that's a small price to pay for being alive and able to work.

[livecam]

The question isn't whether a person can work on dialysis but really how can a person afford not to?  Everyone who is of working age wants a transplant right?  Many of them if not most of them will eventually get one. 

If a person stops working when they start dialysis where are they going to be financially when the transplant happens?  Imagine having money coming in with full benefits and then having that stop cold.  What do you do now?  Can a person expect to pop back into the workplace in an equivalent position to what they had before after being out of the workforce for some years?  What about everything that should have been coming in during the time on dialysis?  And more importantly how do you pay for transplant meds 36 months after the transplant?

So, the answer here is pretty clear.  If at all possible it makes sense to keep going to the salt mine while on dialysis.  Not everyone can do it but many can.  With some of the home hemo and PD options that are available it is easier now to be healthier on dialysis and to keep a patient's life intact.

[thegrammalady]

i would love to work, but.......and maybe it would be different if i had been working when i was diagnosed, but i was between jobs. the cost of dialysis makes it impossible. i'm on disability, and while you can work some and still keep it i would have to clear over $2,000 a month just to break even. because my income is less than $14k a year the state gives me "extra help" i qualify for Medicaid which pays approximately $1,000 a month in medical bills that medicare doesn't cover. they pay my prescription costs, another $1,600 a month. and they pay the premium costs on my medicare part b and d.  NOPE! can't afford to work. i even had to call and complain about being billed $1.66 on an ekg, because if i had paid it and Medicaid found out they would say " oh! you have money, you don't need us!"  aaaaaaaarrrrrrggggh!!!!!. even though i enjoy the time with my grandkids, all of you and especially my naps, i'd rather work, at least a little bit!!!!!