Working on Dialysis

[Bette]

Hi!  I 've been back on hemo for two weeks following a failed kidney transplant .  I'm trying to plan my leave from my full time job and I'm not sure what to do.  I had planned to take 6 weeks off and go back full time, but I am not sure if that is realistic.  I have a desk job.  I  guess the hardest thing is to correctly guage how I will feel 4 weeks from not.  How do you do that? 

How do you guys feel about working vs going on disability, and how long after you started dialyis were you able to go back to work full time?

 




EDITED:  Fixed spelling error in title - Goofynina-admin
EDITED: Moved to work topics-kitkatz,moderator

[Sara]

I can tell you that my husband never really stopped working after starting dialysis.  In fact, I think it was only his 2nd week on dialysis and he left for a few weeks to a training session for work.  Now after being on dialysis since January, he is getting more tired and run down so we are going to start looking at disability options after the holidays.

I'm sure you'll get lots of helpful answers.  Welcome to the board by the way.   

[goofynina]

I think it depends on the individual and how well they feel before, during and after their treatments.  I ran a daycare, when i got sick, i had to move so i lost all my kids and i havent worked since    God, i miss working,  i miss interacting with other adults (parents)    I miss my kids,  I miss feeling needed by someone (other than hubby)   If i could find a part time job, i would love to go back to work doing a desk job, sometihing that doesnt require me to be on my feet too much, 

[Black]

Hi!  I I've been back on hemo for two weeks following a failed kidney transplant .  I'm trying to plan my leave from my full time job and I'm not sure what to do.  I had planned to take 6 weeks off and go back full time, but I am not sure if that is realistic.  I have a desk job.  I  guess the hardest thing is to correctly guage how I will feel 4 weeks from not.  How do you do that? 

How do you guys feel about working vs going on disability, and how long after you started dialyis were you able to go back to work full time?

 

Hi Bette,

 

I can't speak from first hand info as my husband is not on dialysis yet, but from what I've learned:

1) Ask your neph, and everyone at the center -- social worker, dialysis nurse, dietitian and techs, what they would suggest that you do to get the maximum benefit from dialysis and have as much energy and stamina as possible.

2) Be sure to talk to the social worker and make sure the director of the unit knows that if they can't make you feel good enough to work that you'll  go to disability.  In most cases having the patient work allows them to bill the insurance for big bucks; being on disability and Medicare is not as profitable for them -- good incentive for them to do whatever they can to help you.

3) Find out where the home hemo units are and what you will have to do to become a home patient.  Home patients generally feel better, and dialysis doesn't interfere as much with their work.

4) Try going back to work in six weeks.  If you can't handle full time try part time or a lighter work load for a few weeks.  

5)  If you find that you really do not feel well enough to work, then go on disability and find other outlets for the desire to contribute to society -- an easier part time job with fewer hours, start your own home business where you can set your own pace, take up the hobby you never had time for, or volunteer work.

Living on dialysis is not easy under the best of circumstance.  There are people here who are on 3x weekly dialysis and still working.  They should be able to help you along the way.  The hardest thing to do is to do the best you can and let that be enough to make you happy.

Please keep us posted on how you're doing.

[tubes]

As for myself.  I've gone back and forth from working fulltime to being on disability.  Then I became really sick and went on disability for 6 yrs.  This past yr I have been on hemo and have felt so much better. So this past July I started working again, just part time.  So I get a couple extra hundred dollars a month plus my disability.  With how things are going now, I dont think I will ever work full time again.  I'm just very grateful that I can do what I'm doing.

Whatever decision you make Bette, I'm sure it will be the right one.

GOOD LUCK 

**Robert**

[Zach]

After about six weeks, I went back to work.  Everyone is different, so do what you are able to do.


This thread discusses dialysis patients and work.  It may provide more insight.
http://ihatedialysis.com/forum/index.php?topic=1308.0

[kitkatz]

I went back to work two months after I was put onto dialysis in November of 1998.  I still work full time as a middle school teacher.  Do what you can.  It is far better to keep going at your life, than to give up!

[SpeedFleX]

7 years ago when I was 12 little before Christmas I flew from Arizona (Born and grew up there) to germany to visit my mom, that when I had to get on dialysis, so a day before my Bay the 22 of December I went to the hospital and had to get my arm ready for dialysis, 1 week later since I was  not going back to USA I went to a German school, I didn't have dialysis yet but just a funny tube hanging out my neck, after about one week, a Monday I started dialysis and the next day went back to school. It might not be as hard as working full time but if you believe you can do it and you're up to it well then do it.

At first it was hard and all and not being able to understand anybody was very scary at first but thx to my mom dad and friends I made at school I learned the language and was able to go to school with no problems.

[Riki]

I went to school full time when on dialysis too, at 12-13... i'm 28 now, and work part time... I do PD, so I work my dialysis around my work schedule.. I did try working full time, but I just didn't have the energy..

What I suggest is just give your regular job a try.. if it's tiring, lessen the hours... if it's just too much, then look into disability options.. but find out what you can do, physically, first....

[fireguy]

I cann't speak for anyone else, but I never stopped working even while training to do home hemo.The only time I took off was after my tripple by pass , about 3 months. Other than these 3 months, I have missed a minimun amount of time, usually for appointments at dialysis teaching. I have been on home hemo since Jaqnuary 2003.I work as a Steam plant superintendent and Fire Chief in a paper mill and I still make 70% of my calls as a volinteer firefighter for the town.

[Rerun]

The first time I went on dialysis it was an emergency situation and I was so sick that I missed 3 months of work.  During that time I was training for home dialysis.  All I wanted was to go back to work and be normal.  I told God that I would never watch the clock again in order to get home from work.  Working was better than dialysis.  Then I had my 17 year break with a transplant and worked full-time.  During those 17 years I worked my way up to a Program Specialist.  So, when my transplant failed, I just couldn't do the Specialist's job anymore with all the demands and time required.  So, I took a Federal Disability Retirement at age 45.  For me it was age (24 vs 45) and job responsibility.  Honestly, I don't miss work.  I feel much better being on disability and being able to get my rest when I need it.  If that is 2 in the afternoon, then so be it.  If I was working I'd be asleep at my desk.  They frown on that! 

Try working first....... But, take 2 months off when you start dialysis so you can get a handle on it.

[BarbieQ]

I have never stopped working. I have had difficulties with the community college where i work when they wanted to know how long i could sit, stand etc etc. I am in the teachers union and I went to them about this. I found out it was violating the American's disability act. They have left me alone to do what I love to do, Teach. I feel better working than staying at home feeling sorry for myself. I am also on home hemodialysis and this form of dialysis gives me more energy.  In center hemo was killing me, the benefits of doing it at home outweighs the time it takes daily to complete the treatment (3 hours). I recommend working.

[Stacy Without An E]

I have to agree with a number of people above that it depends on the individual.  Personally, I never stopped working and haven't called in sick in 3 1/2 years on Dialysis, something I'm pretty proud of.  Keep in mind I'm a workaholic and love my job, so I wasn't to let Dialysis take that away from me.

[MattyBoy100]

I went back to work after 2 months off from being diagnosed.  I went from full time to part time and took a step down from a manger's job to a supervisor's position.

I think it would be easier on benefits, but I would be bored at home and would go work for a charity anyway so instead, I'm working for money.  Everyone is different.

One thing I have learned is that to start with, I didn't want to think there was anything wrong with me and didn't mention things in my application forms for government disability.  I know better now and when my disability is up for renewal, I am going to tell them about every single little thing from aches and pains to dizziness and fatigue - this time, I'm telling it how it is!

[icecream]

Hello..I went back to work even though i was on dialysis.I went back fulltime.It is rough sometimes.I don't sleep at night which means i have to take a sleeping pill.I sometimes wake up late in the morning.I worked it out with my boss.I go in M-W-F at 7:20 am and leave at 3:50 my session is at 4:15.T-Th i go in at 8:00 so i get alittle extra sleep.I have exhausted all my vacation-sick time so i was put on unscheduled/no pay pto time.I am on FMLA.So i won't lose my job.This whole thing sucks.I am tired of this mixed schedule.I am tired all the time but i can't afford to go on disability.I am not sick enough.I also have go health insurance so i want to work as long as possible.It is up to each individual.I have met people at dialysis that are not working.I at least feel alittle normal working.

[Angel]

I was scheduled for a Kidney Transplant and for whatever reason at the last moment the Doctors cancelled it -- I knew that I had to go back to work, so I spent 1 week on Hemo Dialysis and then returned full-time to work.  I work as an Account Manager handling Corporate Restructures involving Millions, if not at time billions of dollars.  I go to Hemo Dialysis 3 nights a week (Monday, Wednesday and Friday night) after working all day and I usually get home from Dialysis at 11:00 pm and I am up for work at 6:30 am the next day.

No, I am not a Saint and yes I feel tired -- but for what it's worth; the reason I do it is because my life cannot be Dialysis and nothing more. I can't stay home everyday waiting to go to Dialysis.  I need a normal life (or at least the illusion of a normal life).  I find that when I am at work, I'm thinking about work and not about going to Dialysis.  I simply extend my work days on Monday, Wednesday and Friday to include a trip to Dialysis. 

I'm not sure if this approach will work for everyone -- but it certainly does for me.  At least it is keeping me sane!

Angel

[terry3004]

I too have maintained working while I am on dialysis.

When I was on PD, I was able to maintain a full-time schedule.  However, when I went on Hemo, I had to reduce down to a part-time schedule because of my dialysis schedule.  Fortunately, my employer was very understanding as they don't do part-time schedules where I work...I am actually the only part-time employee there.

Now that I have started on NxStage, I am hoping to be able to go back to full-time.  I return to work from medical leave for the NxStage training on Tuesday so we will see how it goes.

The most important thing that I can say is do what you can and feel comfortable with doing.  Working or me helps keep me going as I know that I am contributing to something and not just staying at home all day.  I am not knocking the people that do stay home all day, just saying it isn't for me.

[KT0930]

I did PD for 14 months, and aside from the time needed for training, labs and doctor's appointments, I worked full-time. I did go through a rough patch where I was feeling ill a lot (from Sensipar), so I was calling in sick about once or twice a month. Once I got through that, it was pretty well smooth sailing until my transplant. Thankfully, I have an understanding boss who was ok when I called in late because my cycler had messed up and my treatment ran late in the mornings and things like that. I have a desk job, so it wasn't terribly tiring for me, and I'm also very stubborn about work. Like others here, I needed a reason other than dialysis to leave the house everyday.

[donnia]

I really respect those of you who work while on dialysis   I stopped working after 2 months of dialysis...... but it started with me being in the hospital for a week....many complications with my cath.  My school put me on catastrophic leave, which means I dont work, but other workers donate their days, so it is like I don't miss a  day.  I don't miss a paycheck, I don;t miss my insurance.......... and they will be ready to have me back when I'm ready.    I am blessed!!!!

[Bajanne]

I really respect those of you who work while on dialysis   I stopped working after 2 months of dialysis...... but it started with me being in the hospital for a week....many complications with my cath.  My school put me on catastrophic leave, which means I dont work, but other workers donate their days, so it is like I don't miss a  day.  I don't miss a paycheck, I don;t miss my insurance.......... and they will be ready to have me back when I'm ready.    I am blessed!!!!

You are truly blessed!   I worked for two years after starting dialysis.  Especially the second year, I worked a complete timetable with just two classes that fell into my dialysis time and other teachers were also scheduled for those classes so all was taken care of.  But i didn't realize that the Ministry of Education was just waiting until my appointment was up, not to renew it, even if i was doing a good job. They cold not see past the fact that I was getting full pay, but having some time off!!  During the second year, I never even had one sick day from school!!

[BadRobot]

I think it depends on the individual and how well they feel before, during and after their treatments.  I ran a daycare, when i got sick, i had to move so i lost all my kids and i havent worked since    God, i miss working,  i miss interacting with other adults (parents)    I miss my kids,  I miss feeling needed by someone (other than hubby)   If i could find a part time job, i would love to go back to work doing a desk job, sometihing that doesnt require me to be on my feet too much, 

I lost my kidney in 1990 at the age of 19, a transplant in 1992, needed hip replacements due to the immune suppresents in '95, graduated college (finally) in 2000 and then lost my transplant 6 months later. So my resume is a little weak. I did some substitute teaching because I could fit it around my schedule but I didn't have the energy for the job. I really need to do something for my pocket and my sanity yet it also has to be something I could do perhaps at night or on my own time- like a from home job. Anyone have any ideas?

[flip]

You might want to consider an online business like Ebay or Amazon. It still works for me.

[Run8]

I think you have to go back to work only when you are ready. I on one hand really want to go back to work, but on the other hand i have worked for the railroad for the last 14 yrs.  That job is 24 hrs. a day 7 days a week, my oldest son is 15 yrs. old and i dont even know him. I'm taking this time off to get to know my family.

[Scatterbrain]

I was on dialysis three times a week for 4 hours plugged in the machine. Dialysis in the hospital is 4 hours but you get up in the morning at 5:00 and you get back home at 1:30, you dedicate your day to 8 ½ hours, Three times a week = 25 ½ hours per week.

So now that I’m doing dialysis at home I’m doing 8 hours plugged in the machine plus 2 hours of plugging and unplugging = 10 hours per dialysis. I’m doing this one day yes one day no. That comes out to 15 to 16 dialysis a month. When I was in the hospital I did 12 dialysis a month.

Breakdown – Hospital Dialysis = 102 hours per month.

Breakdown home dialysis.

Preparing to plug and unplug = 45 hours
Dialysis plugged in the machine = 120 hours
Heat disinfection = 15 hours a month.
Internal dialox disinfection = 28 hours a month.
Maintenance = Changing filters,
Taking water samples, keeping records + more = 15 hours per month.

Total average 223.Hours per month for home dialysis.

Plus you are dizzy, week, cramps, and total exhausted. 

It’s a freakin nightmare. I will keep trying till after the holidays, if it does not get better I’m going back to dialysis at the hospital.

And I thought I would have more time to work and have a better life, instead I'm in freakin hell now.


Rocky (Scatterbrain)

[Wallyz]

Home dialysis works for me because I do it at night, while i am sleeping.  So the 8 hours ont he machine gets used productively, and I feel better (doing it every nioght) during the day.  I feel you Rocky,  abotu the waking home hemo, but doing extended therapy on the NXSatge is where it is at for me.