What makes people have to quit working full time?

[MomoMcSleepy]

Hey all,

I am still pre-d, and feeling sort of tired and crappy, but have good numbers and aside from frequent infections, feel pretty good. 

I am keep hearing about people quitting work because of dialysis, a d want to know...what happens?  I know some people have jerk employers or had physically demanding jobs that they had to leave, but I'm years g vague preferences to getting sick, etc.  What happens to people? 

I expect to start Dialysis by the end of the year, maybe by Fall (this is my guess). I want to know what to expect those first weeks, and did you maintain your work schedule that first week or what?  What keep people from being able to work? Do people lose concentration that much?  I work in an office, mostly phones and paperwork, spending a lot big-time on my bum (I stand a lot on purpose).  I feel like God delivered me out of teaching and into a job that  I can do even though I am sick.

One thing I noticed in February after my doc said I'd be on dialysis this year was, I  was depressed for a bit, and definitely not my best at work.  Is this part of it?

[iketchum]

Maybe the depression is one of the stages of accepting your illness. I think we all go through them. The not working part I know first hand. I am doing hemo dialysis in center. I was able to work full time because the boss shifted my days and time around to accommodate. I did treatment in the morning and worked all afternoon, three days a week. The dialysis really drained me and my back started hurting bad if I didn't lay down for an hour or two afterwards. I cut my time as far back as I could before being laid off due to slowing business in the fall (I worked in a tool rental at a hardware store). I felt so much stronger after a week at home. I hadn't seen how weak I had gotten.

[Willis]

I went on the EPO merry-go-round with levels going way up and then way down. This effected me more than anything. I knew my concentration and energy level wasn't what it had been, but my boss didn't tell me until recently how bad it really was and how much this had effected my work. Fortunately I have an understanding boss (it's a small company), but I did see a significant decrease in my salary which I doubt I'll ever get back even though I'm at least working at 90% of my previous level.

I believe the worse thing (I'm on a nocturnal cycler) is waking up a lot and not being able to go back to sleep. Sleep deprivation led to lack of concentration and made it hard to focus. I think a few times I fell asleep at my desk. Even though I have a private office and didn't think anyone noticed--they did. I also went through a depression stage too and surely that didn't help my motivation level.

I think one important way I maintained any motivation at all and managed to get up in the mornings and actually show up at work (even if my performance wasn't 100%) was to get in a lot of exercise. I've said this so many times before that some are certainly bored with it, but I was active in a strenuous sport before D and forced myself to continue after D. Sometimes this was just physically impossible, but having a place to go and people you know helped motivate me to continue playing and exercising, even at a reduced level. I firmly believe that I would be much worse off if I had given up exercising even though I often don't feel like it.

 

[cattlekid]

So I'll bore you with my little story.  I started D on pretty much an emergency basis.  For the first two treatments, I was in the hospital.  Did I mention that this was my first overnight hospitalization EVER?    I had called the Dr. on a Monday morning telling him that I felt like crap and he replied by telling me to meet him in the hospital on Tuesday morning - catheter placed and on the D rollercoaster I went. 

I immediately felt much better.  Even my husband remarked how much better I looked/was acting, when he saw me in the middle of my first treatment.  The toxin buildup must have been massive.  I fought the social worker to make sure that I got a late afternoon placement in the center before I left the hospital.  Because I could work from the center, it really wasn't an issue for my employer. 

Now that I do my treatments at home, it's even less of an issue with my employer.  However, there are days where I really don't want to drag myself out of bed in the morning.  I would really like to cut my hours down to about 75% full time but can't deal with just 75% pay.   

[Cordelia]

I quit my job about a year before my kidneys completely failed. I was getting so tired and lethargic. My job was physicaly demanding so I quit.

Gosh, I lost concentration when I hit stage 5. I was a scatterbrain bigtime. I was so forgetful. I even forgot lunch dates I had with my husband.....things that I really enjoyed and always looked forward to was a huge task to remember and when I forgot, people, including my husband did not understand what was going on and would comment on it and I felt awful and most of all, embarrassed.       

[jbeany]

People do continue to work, but it's hard. 
The fatigue and anemia do a lot of people in.  The side effects that go with D make it hard for a lot of people to do much of anything after treatment besides sleep.  If you've had a bad run and passed out, work is going to be the last thing on your mind.  Staggering home to bed and managing to eat some food is going to take all you've got.
On regular in-center, the scheduling is also an issue.  If you live in a rural area like I did, you may not have a lot of options for time and location.  There's no hope of working a 9 to 5 job full time around standard in-center hours, especially if you are on M-W-F.  Add in doctors' appoinments on non-D days, various surgeries to keep your access working, and (hopefully) trips to a transplant center for listing and staying up-to-date on the required tests, and there's no time left for work.
When I first started, my center was an hour away.  I was given the only available time slot in the small center.  I had to report to the center after an hour drive, hope to get on within half an hour of my arrival, run for 4 hours, hold my sites for about 25 minutes (I'm a heavy bleeder.), and then drive home.  And that's on a good day.  My D center was south of my house, and my job was another half hour north.  If I wanted to work after D, I would have already put in an 8 hour day before I even got to work.  When I got used to D, I could sometimes stop for grocery shopping on my way home if I had a good run, but I certainly didn't have the stamina for an 8 hour shift. 

I'm not saying it's not worth a try.  Some people do better than others on D. (Some people have D centers much closer, too, which eliminates a lot of wasted time.) If you have FMLA time, use it the first month of D, which is always hardest.  It takes a lot to get adjusted and find a proper dry weight, and it's pretty miserable while you are working it out.  But if you can work after, there's no reason not to.

[cattlekid]

Yes, I should in the spirit for full disclosure state that my D center was five minutes away from my house.  Plus I had multiple options for other centers if the one closest didn't have the time slot I wanted.

[drgirlfriend]

My boyfriend, who is a little younger than you, MomoMcSleepy, started pd last fall and has been able to work this whole time. I think whether or not you continue working depends on what kind of d, what your work situation is, and your overall health. The boyfriend had to modify his work schedule to do manual exchanges. Luckily his boss let him and we lived close to where he worked.  Now he does cycler at night which is a bit easier on his schedule as long as he doesn't have to close one night and open the next morning. His overall health is good, so there are no other things he has to be concerned with and pd doesn't sap your energy like hemo can.

[malaka]

MoMo.  You'll feel worse before you start dialysis if you follow the same path I did.  I described it as having a hangover without the fun the night before.  Not exactly the best analogy as I didn't have any headaches or upset stomach, but I was really dragging ass, forgetful, tired all the time, and cranky.   Dialysis took about a month to get used to, but I feel much better. I have more energy, sleep better, and think better.  At least I think I think better!  And the bloating has pretty much disappeared.  I can walk a whole lot further than I could last December.

Now for the downside.  Your schedule isn't yours at all.  You'll have to be at some center, or on home dialysis or PD, as required.  That is your first priority, not work schedule.  So, start contacting centers as if you wait, you'll be placed at the center chosen for you based on it having a chair available.  Consider PD which is probably the least intrusive method except you have to drain and refill several times per day.  Home dialysis can be done at your schedule if you qualify, so that's far less intrusive, too.  The hemodialysis center becomes your place of employment 3 days per week for about 4+ hours per session, plus travel time.  Not compatible with most jobs.

Fortunately, dialysis isn't chemotherapy in that you will recover quickly from each treatment.  Having a fistula, however, does somewhat limit the use of that arm.  Your career as a body builder is pretty much over, if that's what you do for a living.  A few years ago, some NBA player had to retire due to kidney failure, but got a transplant and returned to the league.  Since I'm a Detroiter, too, I'd like to know if you play for the Pistons since they s*** this year.  I don't know if kidney failure is to blame or not.

Anyway, full time work largely depends on your type of dialysis and the work you do.  PD gives you a hole in your belly and a concern about hernias in the belly, so heavy lifting jobs don't work well with that.  Hemodialysis in center or at home means less lifting capability, too.  Read what I had to say about "Hobson's Choice" in another posting.  You're facing one, too.

[Annig83]

I agree with some people here.  I really think it depends on your situation, how well you actually feel, and if your body can handle a work load.  Personally, I am NOT working because I lost the majority of my kidney function due to pregnancy.  Now that my son is 16 months, I decided to go back to school... but I also receive disability whille my boyfriend works full-time.  I am still experiencing bouts of exhaustion, but with a 16 month old who doesn't right?   I've also been diagnosed with rheumatoid arthritis so that takes a toll on my body as well...

I do CCPD at night so I would be able to do day shifts... with hemo, it's a lot more difficult (depending upon the type of job you have) if you are doing hemo at a center 3-4 days a week. (Just my opinion).
When I first started PD, I didn't feel sick or crappy... then again, I didn't feel sick or crappy when my creatinine was at 17 in the hospital.  I just think it's different for everyone.

[bleija]

hmm whats the weight liufting limit on PD, i never heard of this but i have had one hernia and would like to prevent any further ones, im a server so lifting trays is inevitable, but my coworkers love me andoffer to help me whenever they can

[Annig83]

My doctor told me 20-25lbs.  I too have had an umbilical hernia, and it was just from a fill!!!  I had it repaired, and so far things are back to normal... glad my son is still only 20 pounds...otherwise I think I would have a very angry baby (and probably an angry Neph  )

[pitagory]

OK I am on Pd on the cycler at night.  I make about 5 to 10 stops per day in different stores, I am super tierd but the way I see it if I stay home I will get depressed, luckily my job is very flexible and my boss is very understanding. its not easy I want to quit most of the time but I just have to keep motivating my self all the time.

[Grumpy-1]

When I first started on D, I was assigned a late time slot in the clinic.  So on M,W,F i would arrive at the clinic at 5pm and get off at their closing at 9pm.  I live only a few minutes away from the clinic so it wasn't too bad.  I always felt drained after the session thou.  I'm still working full time (between the 1 hour commute to and the 1 1/2 hour commute home) plus a 9 hour work day, my life was and is spent working and doing D.  I was only on Hemo for a few months before I switched over to PD.   Now I'm on the cycler for the first exchange at 5pm (the time I get home from work) then the next exchange starts at 7:30pm and goes through the night. The alarm goes off about 2:30 am and I head out the door for the drive to work about 4am.  Weekends are a bit more liberal in times.  At work I do 2 manual exchanges in my office.  I have a very understanding boss(es) and co-workers so it isn't too bad.

As far as being tired, forgetting things, and all the other stuff that has been mentioned,  I think we all have gone through it all at some point.  BUT we need to keep going and try to keep a positive outlook.  Remember the alternative is a pine box 6 foot under.


MoMo - Keep reading and posting to this forum. It will be a great help and support to you in your travel through this rough time.

Grumpy
 

[MomoMcSleepy]

   Since I'm a Detroiter, too, I'd like to know if you play for the Pistons since they s*** this year.  I don't know if kidney failure is to blame or not.

Anyway, full time work largely depends on your type of dialysis and the work you do.  PD gives you a hole in your belly and a concern about hernias in the belly, so heavy lifting jobs don't work well with that.  Hemodialysis in center or at home means less lifting capability, too.  Read what I had to say about "Hobson's Choice" in another posting.  You're facing one, too.

LOL, no, I can't be blamed for the Piston's poor play.  They are really pulling out al, the stops to get people to go to games, though,it's pretty sad!  Have some pride, geez.  It's like a circus advertisement when they list the big acts at the Joe (or wherever, k do 't pay attention).  I remember when I met my husband 7-8 years ago, we who,d gather at his dad's place to watch the game, we totally cared then.  What happened?  Let's go to work!

Anyway, I have to do hemo, I have  tons of scar tissue.  I am supposed to get the A/V fistula tomorrow, but have a kidney infection.  I've still been at work all week, so maybe they'll still do it, anyway.. And I'm sorry, I always forget to check out everybody's name before I respond.

I'm going to try to use the hospital's hemo centers, they are well-rated except for an 83% mortality  rate within first year of dialysis,  which is confusing.  They have otherwise  really good ratings, so I  figure they get really tough cases?  Confused.....but there's one about 20 mind from my house, 30 mins from work, and I hope to get afternoon shift and just leave work an hour early.  Thanks for your responses, and by all means, keep them coming.  I want to try to plan out the first few weeks, and give notice that I will be out for a time, if that seems necessary.

[Willis]

My doctor told me 20-25lbs.

Same here...now how much do those boxes of PD dialysate weigh? 

 

[bleija]

nobody ever mentioned this to me, and ive had at least one hernia

[Joe]

I calculate about 2.2 lbs per liter. I use the 6 liter bags so that would be 13.2 lbs per bag, 2 bags in a box for the cycler. For the manuals, there are 6 2 liter bags in a box, so the weight is the same at about 26 lbs.

[mcclane]

One factor that I think of is the type of dialysis.  If the doctor decides on conventional hemo, it would be a real challenge to hold down a FT job and do the treatments.  I know here there are 6 pm times for conventional, but that means after a full day at work and doing hemo, you wouldn't get home until at least 11 pm, which makes for a long day.

I've never quit my FT job, even when I was on pre dialysis twice, and doing dialysis (pd, then the cycler, then finally nocturnal hemo).  My doctor knew I had to work so he tried to pick the dialysis treatment that would best fit my lifestyle. 

Doing the manual PD was abit of a challenge, but where I worked I either had access to the health clinic on campus or the dialysis clinic was 1.5 blocks away. 

I did feel like crap when I was put on PD the second time around, especially near the tail end when my peritoneal membrane gave up the ghost, but I still went work and did my regular activities.

[Poppylicious]

My Blokey was able to hold down a full-time job with twilight haemoD MWF.  It meant he didn't get home till eleven (we're 28 miles from the hospital) three nights a week so it was a struggle at times, but he adjusted to it quite well.  Weekends were ours to do with as we pleased.  I was happy because to not be able to work would probably have been the final nail in the coffin for Blokey, possiibly quite literally.

It is possible to be on dialysis and work full-time, but it varies hugely from person to person (as the above responses have shown!)

[MomoMcSleepy]

Thanks Grumpy, Poppy and everyone for the advice, I'll definitely try to stay at work.  Missed A/V fistula today, at work instead. I still have a sore kidney and a little nausea, but no antibiotics yet.  I wonder if I have a kidney stone  with a little bladder infection thrown in? Either way, my big plan to get my fistula on Friday the 13th is blown, postponed til May 2.

[kitkatz]

I have been working the entire time I have been on dialysis. I am a special education school teacher.  I have had to make adjustments to my schedule due to dialysis.  I missed a few meetings because I had to leave early. I am doing nocturnal dialysis now and am doing much better mentally and physically. I was out for two month from when I went into hospital and began dialyze on an emergency basis.  I went in Nov 6 and went back work Jan 3rd.

[MomoMcSleepy]

That's pretty amazing, kitkatz, I'm glad you can do nocturnal and hope you manage to get enough rest.  I thought about going back to school for special ed, I probably should have done that in the first place.  I subbed for high school special ed often and really liked those kids, but of course I didn't have to do all of the evaluations and meetings and paperwork.. I also taught summer school, which had a ton of special ed kids, unfortunately (for them).  I loved teaching summer school, too, it was the normal semester/school year language arts classes that dragged me down.

[Stacy Without An E]

I must admit the first year was incredibly tough, but I never considered quitting until this last year.  No one bothered to inform the patients in my clinic that the EPO requirements by the FDA had changed, so last summer I started feeling really sick and exhausted.  It took me going to my primary physician to tell me my hemoglobin and RBC count were too low.  What the hell is my nephrologist getting paid to do?

In the last year I have asked my boss to allow me to do a split shift.  I come in at 9am, do my radio show from 10am-3pm and then, on days I'm feeling run down, I do a split shift.  It does make the day quite long, but I go home for a few hours, lie down, and sometimes fall asleep for 45 minutes.  On non-treatment days, I come back and finish my shift.  On Dialysis days I do have to come back to work after treatment, but at least I'm still working full time & doing what I love.

Its a major decision to quit working, but sometimes its unavoidable.  My biggest concern is losing my company's health insurance because it covers my medications pretty well (of which there are plenty.)  With rent and a car payment, I don't think I could survive financially on disability.

[Grumpy-1]

The health insurance/ benefits are the main reason I continue to work.  I think with the retirement check and maybe disability, I could manage to pay the bills, but the medical bills would overwhelm me.  And I enjoy eating, sleeping in a warm bed, and all that nice stuff.