Working on dialysis......or not????

[Lucinda]

I know I have been really sick the past six months and have tried to keep up with work but how does everyone who works do it on dialysis?  I go to work at about 5.30 in the morning and get home about 7.00 in the evening.  This morning on the way to work I was thinking about how I was going to be able to manage although I will be doing nocturnal.  I have allowed for the six-eight weeks training but reading so many of these threads I think I am underestimating how tired I am going to be.  To make matters worse I had to put our marketing manager off today as she is not working out and we have noone to replace her so that will be an extra responsibility for me for a few months until we go through the process and get another one.

My bloods are so low at the moment and I could not get an iron infusion because they couldn't find a vein to cannulate and I had more bloods done today and it is that time of the month and I just passed out this afternoon because I am so anaemic.  Under my nails are as white as snow as are my lips.  I pack on fake tan and dark makeup to make myself feel better and I was hoping I would feel better on dialysis not more tired.  I am sleeping downstairs at the moment because I can't get up the stairs as my breathing is so laboured.  I can still function and perform well at work though.....as long as I am sitting at my desk and not running around.

So....which is it......will I feel better or worse? xxxxx







EDITED:Moved to work section-kitkatz,moderator

  

[st789]

I really admired people that can work full-time while doing dialysis.  While I was on dialysis, whenever I woke up so early in the morning, I felt so nausea, fatigue and so tired.  I guess I am not alone in feeling like this.
I guess circumstance and situation make us stronger.
Lucinda take care of yourself mind and body.

[Sluff]

While I was on dialysis, whenever I woke up so early in the morning, I felt so nausea, fatigue and so tired. I guess I am not alone in feeling like this.

Hell I'm not even on dialysis and I feel that way.

[MyssAnne]

Lucinda, it will get better, I promise. I'm working, still, having just started dialysis just over a year ago. By the time I started, I was ready for it.

[keefer51]

Lucinda, I worked the first time i was on dialysis but i was missing allot due to getting sick from the catheter. I woke up at 4:00am to get to work by 6:30am. I was so tired all the time and sick. I did the best i could. I was in my thirties at the time. Now i am in my fifties and don't work. I tried but the standing most of the time made my legs swell. I think i can but when i try i am just too tired. I wouldn't push it pal. Maybe in time you will feel better. Don't get too tired though i miss you in chat!

[Krowbar]

Heya,

I'm able to work full-time but then again I have PKD and still have some small amount of kidney function left and being 36 helps. Being a Software Engineer, I don't engage much in physical activity which helps as well.

During crunch times I used to work till midnight but now I have to be on dialysis by 10:30 PM so nowadays I leave by 8PM. So mainly my main obstacle to working has been the time consumed by dialysis, blood works, clinics etc and extra visits to the neph for any complications I might have. I have cut back on the long workdays mainly because of the time commitment towards dialysis but also because I want to do other activities besides just work, work, work.

I think other PKD people might be able to work fulltime as well due to the nature of the illness. At least everyone in my family with PKD is/was able to remain active full-time till their 60s though for most of them the illness started in their late 40s/early 50s. Other kidney diseases might be more debilitating due to damage to other organs and so on. PKD people feel free to correct me.

[Sara]

Joe worked almost a year and a half after starting dialysis, but he's been having problems and finally needed to go on disability.  Dialysis takes so much out of you, if you can afford to go on disability, I say go for it. 

[kitkatz]

I have been working the last eight and a half years while I have been on dialysis.  The toughest months will probably the first couple of months while you adjust to dialysis. Then you will feel better and be able to take some things on better.  Taking cre fo yourself will be really important if you plan to stay working.  Stickt o a healthy diet and get plenty of rest.

[st789]

A healthy diet and plenty of rest are so important.

[stauffenberg]

Statistics show that of the dialysis population in the working age range, only 30% actually work.  The typical dialysis patient is profoundly anemic and is losing about 20 hours a week to hemodialysis, if you count time travelling to and from the dialysis center plus waiting to be put on dialysis and taken off at the end of treatment.  Then there are all the ancillary medical appointments for the many complications of dialysis, which also cause many days of work to be lost.  I was working as a university lecturer when I developed renal failure, and even though I had only a light schedule, I found it impossible to continue working.  Since I had to vomit twice a day, every day, for the entire eight years I was on dialysis, I was afraid that I would vomit during a lecture, which would be hard to explain, and this was another reason for giving up. After my renal transplant, however, I was able to return to work full-time within two weeks of the surgery.

[st789]

I understand about the vomiting part.

[Bette]

When I was on dialysis in my 20's I was able to work full time.  I did that for eight years.  After my transplant failed last fall I tried to go back to work but the exhaustion is too much for me.  I remember Zach saying that dialysis is easier in your 20's than in your 40's and I think it is sooo true.  I turn 40 this year and I have found dialysis much more difficult than I did when I was younger.

[jbeany]

I think the first couple months of dialysis are going to be the hardest for you.  I was perpetually wiped out.  By the end of the third month, I was finally starting to feel better.  I'm now working one day a week.  A six hour shift on my feet is still pretty hard, but I don't think I'm that much more tired after it than any healthy person.  The biggest problem is the swelling I get in my hands and feet.  The only way I've been able to stop that is to simply not drink more than 2 cups of water from Saturday after dialysis until Sunday night when I get done with work. Not fun, but it's the only thing that works.

 I think if you want to make work a priority, then you can still do it, but you just have to keep in mind that something, somewhere, is going to have to give if you want to spend your limited energy on work.

[AlasdairUK]

For me once I started dialysis I felt better than just before. I think I waited too long to start.

The trick for me with continuing on working is the quality of my dialysis. Being able to have a quality access to run at higher pump speeds giving better clearance really makes a difference, it will also in turn help to keep your HB up as your red blood cells will last longer.

If you are doing nocturnal you should get a really good clearance level and if you run for 8 hours your UF rate will be low so your body will be able to adjust with the fluid removal. It is normally the high fluid shifts that drain people when they come off the machine, causing a blood pressure drop

[boxman55]

I am 52 and still working F/T It gets harder every day though.

Joe worked almost a year and a half after starting dialysis, but he's been having problems and finally needed to go on disability. Dialysis takes so much out of you, if you can afford to go on disability, I say go for it.

Sara I just might take your advice....Boxman

[Chicken Little]

I miss working, but I just cannot imagine doing it.  My BP is always low.  I have no appetite and I drink as much as I can hold, but it's apparently not enough.  I get very little sleep while I'm on the cycler.  Every drain wakes me up.  Then I had fibrin and 2 alarms (bubbles is in the cassette) last night.  I didn't get out of bed until noon today and I know I'll be back in bed by 7-8 pm tonight.

Last year I worked 70-80 hours in the office and was constantly on my Blackberry when I left.  Now, it's truly all I can muster to get to the 1-2 doctor & other appointments I have each week.     What a difference kidney failure makes.

[Slywalker]

Greetings - I am one that works full time while on dialysis.  Initially I had to be on hemodialysis while the catheter thing got straigthened out and the only time I took off was for the dialysis and driving to and from.  Hemo was very hard on me and when I wasn't driving or working I was sleeping.  Finally when I got to do PD I got straigthened out a bit more so working full time is now only interruped by the constant dr appointments or waiting for the supplies to arrive.  No it isn't the easiest thing to do but without work I afraid of how I would feel by not having enough to do in a day for me.  I'm lucky as I have a ton of sick leave built up. 

Working, obviously, is a personal choice.  But don't decide to quit until you've been on dialysis for a while to see if you get feeling better.

Take care
Sandyb
 

[Lucinda]

Thanks Everyone,

I can't imagine giving up work at all and I can't imagine feeling much sicker than I have been the past six months.  I have had four graft changes, numerous infections and a superbug and I have have pretty much worked through it.

I spend hours getting ready in the morning so I don't look as unwell but now my hair is falling out so I have taken to wearing wigs.  It just gets a bit depressing feeling sick all the time but I am optimistic that the nocturnal dialysis will actually help.  In an earlier thread I talked about my menieres disease.....not that is a disgusting problems.  You can't move your head without throwing up or falling over but I haven't had an attack of that now for nearly two years.  I had it every day for four years and any sickness for me now is not nearly as bad.

I am goign to try and work as long as I possibly can.  xxxxxxxxx

[larry781]

Hi Lucinda-
I'm 41, have been on dialysis for 5 years (my anniversary was July 1) and work full time. It is difficult to say the least. Not only is working with the symptoms difficult, but also with the stigma. I simply drive myself to it. I guess poverty is a strong motivator.
Larry

[skyedogrocks]

Rob works full time.  He's an electrican for a large city, so it's not the most difficult job in the world, but he still has to get up every day for it.  Mentally he has to work to keep his sanity in check.  If he didn't work, he would definitely be depressed and feel like crap.  Thankfully he works with a great group of guys who respect him immensely.  His boss is also understanding of the endless dr. appointments.   He is also 37, so he has age on his side.

[zekewolfy]

Rob works full time.  He's an electrican for a large city, so it's not the most difficult job in the world, but he still has to get up every day for it.  Mentally he has to work to keep his sanity in check.  If he didn't work, he would definitely be depressed and feel like crap.  Thankfully he works with a great group of guys who respect him immensely.  His boss is also understanding of the endless dr. appointments.   He is also 37, so he has age on his side.

Sanity Check! Yes! That is why I work full time. I am 40 years old and a Software Engineer, that is a little more helpful a career with Kidney failure as there little physical activity. The only problem is fluid restrictions. Tough to work at full speed without drinking too much of something. Work, I know it can be a toil, but we neeed to be productive to live and feel good. I know its tough,I just wanted to quit dialysis and end it all, but I wont. You'll need to kill me to stop me.

[st789]

Did someone say kidney failure and poverty?

OMG......yep

[Bette]

I understand about needing to have something to do.  I have a little girl at home so even though I am not working at a job, she keeps me pretty busy.  I think that if I didn't have her I would work at least part time.  It's important for your mental health to have something in your life that takes the focus of of being sick.

[Stacy Without An E]

The only time I've missed any work was two years ago when I tried to have a PD catheter inserted into my belly.  The doctor was a quack so three surgeries later I had it removed.  Since then, I haven't missed a day of work.  I've somehow learned how to sound energetic on the air even on days when I feel like there's no possible way I'm going to get through an air shift.  I only feel I sound great on Tuesday's and Thursday's as those are after Dialysis treatments.

I'd have to say anyone who continues to work while on Dialysis is an amazing example of courage under fire.

[KT0930]

Between doctor's appointments, lab work, and alarms that make my treatment take longer than it should, I miss at least part of a day three out of four weeks every month. However, I won't give up working until I start feeling A LOT worse than I do right now. I love my job, I'm being trained to take over a growing department in the company, and my boss is completely understanding about all my absences (even uses me as an example of a positive attitude when others start to complain about their aches and pains!  ).