Do you work?

[RichardMEL]

Henry you're an inspiration. You're doing it on your terms and are in a heavy duty industry to boot (I sit on my backside in front of a computer all day - not too hard!). It's awesome you've found a situation that works for you - both with the dialysis modality, and agreement from your employers(and you're not demanding much really).

[Henry P Snicklesnorter]

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[RichardMEL]

I think you're finding a reasonable middle ground that for you works well - or is so far. Can't argue with results. In the end, as with all of us, it's your choices - and as you say gives YOU some measure of control over your life - where things like kidney failure (and the rest) take some of that from you. I can absolutely get that. It's the same sort of reason why I always want to know my labs, and what the settings are, and discuss any proposed changes with the team etc. I want to be involved, and to make decisions that impact on MY life and MY body.

My best wishes that all continued well for you!

[fran]

I am lucky enough to work for a flexible company - when I began dialysis, I went early in the morning, then 'attempted' to work from home those days. I find it difficult to concentrate after dialysis and didn't come around til 3 or 4.   Finally, after 8 months and a requested transfer to another facility, I'm able to work all day, THEN do dialysis.  I come home, we have dinner, and I put my feet up til bedtime.

fran

[wrenchturningredneck10]

Henry,  You are an inspiration to me too!!!  I hope that I can do half as well once I start working this fall...

[Brightsky69]

I work as a training tech. mainly a computer job. But dialysis is wearing me down. I have trouble sleeping and wake up stiff and sore. I am trying to get premission to work some days at home.
Whew!

[casper2636]

I used to be a trauma Nurse and couldn't keep the hours and be on dialysis at the same time. Plus the fact that D gives me good days and bad days. Some days I'm so sick I just end up throwing up all day and feeling totally drained. Others, I feel fine, like I could work 'til the sun set. How could I keep a job when my health and well being is so iffy?

[brandi1leigh]

I don't work and feel extremely guilty about it. I was a high school teacher. I paid for a Disability plan before I ever knew what PKD was, so when I had to start dialysis, I received about 60% of my salary. There are some questions about how long I can collect on that policy. Eventually I can retire via disability through the Texas Teacher Retirement System. That check won't be enough to cover my living expenses, but I will be able to get supplemental private insurance through them to go along with my medicare. And, if I feel like it, I can apply to substitute teach for up to half of the school year. I live in an area with a lot of high schools and middle schools, so there will be plenty of places to sub.
Right now, I don't see how I could work (even subbing). I admire everyone who can, but I feel terrible all the time. Nondialysis days are slightly better, but for the most part I'm always tired (Hemoglobins = 9/10), I have nausea, I'm weak after hemo, and my whole body aches.
I'm constantly doing searches for statistics on how many dialysis patients work, because I want validation that it's okay to accept the disability checks. I know that the research says that mentally I will feel better if I'm working. But I feel like I contribute to society without working, so I'm not sure officially working will make much of a difference to my mental health. It might make me stress less about whether or not my neph and the clinic staff think I'm a complete lazy bones because I don't work. Every time they ask me when I plan to go back to teaching, I cringe inside.
Sorry for the long post. I'm dealing pretty well with dialysis and all of the things that hemo brings with it. But the working issue stresses me out faster than anything else. I just wish someone would tell me its okay to stay home and be sick.

[rsudock]

I just wish someone would tell me its okay to stay home and be sick.

Brandi-It's okay to stay home and be sick. I wish I had more supportive people in my life tellling me that, so I will support you friend.

xo,
R

[brandi1leigh]

I just wish someone would tell me its okay to stay home and be sick.

Brandi-It's okay to stay home and be sick. I wish I had more supportive people in my life tellling me that, so I will support you friend.

xo,
R

THANK YOU! And right back at you. It's nice to know there's somewhere we can go for support, even if it is the internet.

[MrsWright]

I work fulltime a a social worker. After leaving school some years age (!) I did an apprenticeship as a hairdresser. o
I was told a very wise thing when I was a kid and beginning dialysis - Fit dialysis around your life. Not your life around dialysis. And I have lived by that. But it is much easier to do that when you have a machine at home. Everyone I work with knows that I have kidney failure and it is just another thing. No one really bats an eyelid! I get no attention for it anymore!!!!!   

Now in my experience (I don't want people jumping down my throat!) a lot of dialysis patients think their life is over and that they couldn't possibly do anything but sit around and mope. People don't realise that work is so much more that getting money for a job well done. You meet people, achieve goals, develop a sense of achievement, create - the list goes on.

Take care everyone

Nicole

 

[okarol]

The people struggling with employment don't appear to be due a lack of interest or motivation, but the ones who are dealing with severe fatigue and multiple hospitalizations due to complications.

In my daughter's case, she started having anemia at 15 and started dialysis at 18. She tried attending college while on in-center hemo, but was always so exhausted and she could not focus. She's now had a transplant for 3 years and worked for about a year and a half before she was laid off. She never really has had much of a life, but that's just our experience. I know you were young when you started too, but not everyone gets through it the same.

I hope she can find another job soon! Her kidney is rejecting so we'll have to see how long it lasts.

[tbarrett2533]

I don't want to work, i am beyond wore out from this.....My doctor did not listen to me when I told him how worn I always feel, so I switched doctors and go see the new one on March 18, 2011 with Hopes that he will listen to me!!

Until then I will continue to work my 7 days a week 40 plus hours and feel like crap!!!

[Atooraya]

I've been on pd for about a year. I work an engineering job for 10 hours a day. I start my day at 5 am at the gym. Do a manual exchange at noon. Sometimes I even have to work on Saturdays.

[mcclane]

when i was on pd (manual exchange), I still worked FT.  I worked at a university, so I used the health centre to do my exchanges.  When I switched to the cycler, it was even easier, as I did not have to worry about manual exchanges during the day.

Now that I'm on home hemo, I control my treatments, so I usually do them at night so that gives me the day to go to work.

[Lillupie]

 I really wanted to add to this. I suspose that technically I could work, according to my labs. But I just dont. I just feel as though I have too much on my plate to work.
 Physcially, I should be able to, but there are days like a few days ago, I just cannot see myself working. Im getting married (i know not that that matters), while trying on wedding dresses, I felt so weak and dizzy, that I felt like I was going to faint. PD does cause you to have lower then normal BP.
 I have tried writing a book on dialysis. I did get up to about 150-175pgs. I would like to finish it, but being lazy at getting renal friendly recipes, finding a way to get people to sign a release of information via the internet.

The thing is I am my mother's taxi driver. At the moment, I not only have to do daily PD dialysis, on the cycler and a midday exchange, but I have to drive my mom to either to the bus stop in the morning or all the way to work, which is about 1.5 hours round trip and I have to leave the house again at 3:45pm to go back all the way to work to pick her up. Any type of shopping she needs to do, I am the only one to take her. Plus I share joint custody with my daughter's father/grandmother. And I dont have a babysitter. I am hoping to volunteer or get some sorrt of part-time job when my daughter starts the first grade this year. It looks like I may need a new car, and I really want to help with the expense of the wedding. My poor fiance is paying for it all.
 At the same time, Im afraid that noone will want to hire me when I need so many days off. Last week I had a appointment nearly every day last week. Baxter comes with supplies, I had clinic one day, Monday was my yearly transplant evulation, and another day was therapy. (yes I struggle with this dialysis)
 Thats me Lisa

[willielt1]

I work Full time 10-11 Hour days ...5 - 6 Days a Week
 
 I Drive a oil/Fuel Tractor Trailer In NY .. Dialysis Monday Night ... And Thursday Night ...
 
Been On Dialysis for almost 2 years .
 
 

[packshortie]

I work full time as a Scientist in a genetics lab.  I work 40 hours a week and at end of a month I normally work more.  I love what I do and don't feel bad on PD so that does make it easier.  However I also know disability would not pay all my bills so I suck it up and work even though I know there are days I feel like crap.

[Annig83]

I have a job interview on Thursday at a floral shop, for arranging flowers and assisting customers.  It starts at part-time and will go full-time in the holiday months.  I guess I will be able to answer the above question when or if I get this job. I haven't worked since May of 2010 when I first became pregnant, and had declining kidney function.  Now that I am on PD at night, it frees up my days and I feel better.  My doctor gave me the okay for work!!    I've always been creative but I've never actually worked doing something like this.  I make my own wreaths using silk flowers and make center pieces in which I have sold to many friends and famiily.... I am a bit nervous, as my interview is having the owner watch me put an arrangement together.  Please wish me luck!!

[pitagory]

I am on Pd with the cycler at night so I have all day to work. I work 5 to 6 days a week. I love my job  because it is very flexible if I need to go to the doctor I go and don't have to let my boss know I set my own hours and as long as I get my route done by the end of the week I am O.K. I am very active at my Job I go from store to store putting in the DVDs in side the red kiosks that rent movies so I am moving all day and lift about 30 pound.
 I do about 10 to 16 stores a day. Yes I do get tired but for me it seems that if I stay home I feel even worse. Plus I also help my husband with the accounting for his landscaping business and I have 2 teenage boys at home. Woof no wonder I can sleep well at night even when the machine is noisy.

[ToddB0130]

I am pre-D,  but absolutely plan to keep working once I have to start.  I'm already trying to get myself scheduled for the best possible plan to continue working.

[justme15]

I'm like Todd... pre-dialysis, hoping to be able to do PD, but am making plans to work my job around HD as well. 

[Joe]

I work Monday-Friday as a program manager for my company. That is mostly an office kind of job and am at a desk the majority of the day. On the weekends I work 8-12 hours at Home Depot. That is my fun job! It's a kick to be able to help people figure out how to complete a project they are working, and try to get them finished in less than 3 trips to the store While I do enjoy it a lot, I'm starting to notice it's getting tiresome and may have to let the weekend work go.

[sutphendriver]

professional firefighter for 15years, started D in 97, had a transplant in 98...started D in 2008, waiting for next transplant.  I'm fine with sick people not being able to work, lazy people who use sick as an excuse really chap my butt though.

[Rain]

I work 40 hours a week as a Business Analyst for an IT company.

And my part time job is 15 hours in center hemo which I don't get paid for me but allows me to live my life.

 My boyfriend and I discuss the possibilty the other night if and when the transplant happens and if it doesn't work, that I go down to part time.  My job is stressful and I'm having a hard time managing my life and work and dialysis.  I haven't had a proper vacation ever, since I got sick right after graduating from university. 
Most of my vacations since dialysis have been going on weekend trips or back home to my parents for a week or so.

I think after living 4 years like this, the stress is finally getting to me.  I only took 2 days off work when I got sick since i was stuck in the hospital.  But I was back at work the next day after they put my line in.
When I got my fistula in I was forced to take a week off, since I tried going into work by my arm kept getting swollen if it wasn't elevated above my heart.