I cant take time off????

[paul.karen]

I have been reading alot of stuff here.
Information overload to say the least.

My Biggest question and fear is not being able to work.
I work for a small business.  Actualy i am the one man show in the back ofice other then the owner up front.
For what i do i make decent money. 

Has anyone gone right back to work after starting Dialysis?
I mean like the next day.  After your first session.

After i get my fistula.  I am certain i can come back to work.  I just wont tell anyone :-0
Btu i am reading it takes some people four maybe six weeks to feel good enough to go back to work.
I feel this isnt an option for me.  It is hard enought trying to arraange a week off three times a year.  Can never take two weeks together.

So please tell me some people can start and continue to work with no or very minimal interrruptions.

and my god how many differnt kinds of dialysis treatmentds are there...
One last question.
Has anyone started off with hme dialysis and bypassed in-center treatment.

Thank you for any input.
Wait one more thing.
How much does one make on disability??  I am certain if i am forced to go that route i will lose most everthing i have.  I have no family to rely on and it is just me and Karen.  I am so worried i am sick.

[jbeany]

The first month of hemo is pretty rough.  All I wanted to do was come home and sleep.  I wouldn't say it's impossible to work through it, but it's certainly not going to be easy.  You might have a better chance at it if you can do an evening shift or even nocturnal.

Yes, you can start with home dialysis.  Have you looked into PD at all?  If you want to keep working full time, it might be a good option to start with - the scheduling is easier to work around, and you can do it at work or at home when you need to.

You should have gotten a letter from Social Security that will tell you how much your disability would be.  They send everyone that information every year.  It depends on your work history.  If you can't find the letter, I think you can go to the social security website and find it by signing in.

[breezysummerday]

My Ray went back to work after dialysis.  He is a Chef.  There were a couple of times he needed an extra
day off to go to appointments, such as blood draws and vein mapping to get prepped for the fistula. 
After the fistula surgery @ 5 pm (delayed by the hospital because the surgeon was busy) the anesthesia
wore off with in a couple of hours and he started in with the percocet.  Hurt like a mother for him all
night.  Finally the pain subsided around 3 am.  This surgery was done on his days off.  (Tuesday and Wednesday).  Okay, back to going
to work the next day.  Ray had to have a permacath put in because of an intestinal infection that finally
killed off his kidneys.  That was on June 6th.  He dialyzed the next Thursday, June 12.  He went to work the next day.
He dialyzes at 5pm. Yes, the first few weeks, he was not himself.  This I attribute this to adjusting his dry weight.
I'm not sure what you do for a living, but Ray let his crew know exactly what was up and they were/are still very
supportive of him.  So, Ray stands on his feet all day, uses both hands to lift heavy pots and pans and
runs a crew of 4 sous chefs and 9 waitresses and deals with vendors and  other kitchen support. Would you believe
his main concern was catching a salmon and if it would ruin his fistula?  So this summer, he didn't fish (I did).
Anyway, like yourself, he had to be at work.  Your thoughts are probably racing and you are scared for your future.
If you are going to go the fistula route, your neph will let you know what center and at what time.  They will
have a treatment conference with all the people who will be involved with your care.  Soon after, you will
meet with a social worker who can help guide you with disability/payment options, etc.  This is what we went though.

Hope our story helps.  My thoughts were all over the place, but time and educating yourself (thanks IHD members!) helped
smooth the path. 


 



   

   
 

[paul.karen]

Thank you both for your input.
It is GOOD to see that it is possable to go back to work on the fast track.

As for the letter from SS.  Yeah i do get them.  And yeah i cant afford to be on disability at all..

[Sluff]

Great question. The members here are great. Straight answers from the people who know by experience. Hope your transition goes smoothly.

[Phraxis]

I went back to work shortly after getting out of the hospital. I went in suddenly, going from no symptoms to dialysis with a short four week stint in the hospital.

But to your question, I was able to go back but severely reduced hours. I was going about eighty hours but now restrict myself to 30 to 35. I also have a very accomadating office -- helps when you are the boss.  Seriously, being realistic about what you can do is the first step to maintaining a job. I found that I had allot less control over my ability to perform tasks, and if I tried to ignore those limits I run into troublem. But if I plan for my afternoon nap, eat properly and schedule approapriately i can keep pace.

however, I have had to accept that i cannot perform at the levels that i could prior to dialysis. the biggest change was cognitative impairment. Some times I just can't think and those are the times I rely on staff. great staff.

In short, you can work but you have to be realistic about your changed abilities.

[RichardMEL]

I got my fistula in 2004. I can't remember if I took any time off work.. I think maybe just the two days for the hospital time and then I went back... but I went back to work the next day after my first dialysis session. It knocked me about a bit that first night, but I was OK next morning and went to work as normal. Indeed I thought it was good to keep a "normal" routine up and I really haven't missed work due to dialysis ever since (although I have SO MUCH leave time now accrued that they are starting to look at me funny lol).

So yes, you absolutely can go back to work once you start dialysis.. you may need to modify work hours/paterns depending on dialysis time requirements and how you feel settling into it though. You might want to discuss this aspect with your boss so they have a heads up on that.. but it may not really be an issue for you.

I love being able to work still. It makes me feel productive to do something with my brain, earn money, be with co-workers and friends and most of all NOT be sitting at home focusing all my attention on kidney failure and dialysis - I would rather think about good things.. or at least mundane stuff like the usual work issues everyone has

[cherpep]

Paul,

I was off work for about a week after starting dialysis.  It was really rough.  I was exhausted ALL the time.  After getting my fistula, I was off for another week.  To be honest, I could have used more time off, but like you it was necessary for me to get back to work asap.  Even though I went back to work rather quickly, I can't say that I was very productive or doing a very good job.  I was just kinda there.

[keefbeer]

I have the greatest respect for any dialysis patients who through necessity need to continue to work.I tried for a while but because we have no physical signs of our renal failure colleagues began to see me as lazy or work-shy so in the end I told my story and was rewarded with ill-heath redundancy, the bastards.
Put yourself first this could be a long-term problem.

[pklipe57]

In February I had my first fistula surgery.  I was off the day of surgery and went in a couple of hours later than usual the next day.  I had a catheter put in on April 22  and started in center dialysis that day.  I went to work the next day.  I have since had my fistula revised again and again went back to work the next day.

I, like you, work in a two person office and my job is very important to me.  It is a desk job and sometimes rather stressful.  I miss very little work and try to book all of my doctors appointments in the early morning, so then I can come straight to work from the appointment.  My dialysis treatments are 5:00 to 8:30 p.m.  I drive home, have a snack and go to bed.  By the morning, I am feeling pretty good. 

There are somedays that I just don't think I can get up and going and sometimes at least part of the weekend had to be used just to recuperate from the week.   

[Lucinda]

I started dialysis and I could quite easily have gone back to work after the first treatment but I had to do nine weeks of training to do home dialysis and there was no cutting that short.  I couldn't work for the whole nine weeks.  I think if you start when you are still reasonably well, then there is no reason you can't be doing what you were doing before you started - bar heavy lifting etc.  You will have good and bad days but I haven't had a day yet, after four months that I have had to go to bed or that I couldn't get up in the morning and do what I would normally do.  It is just getting your life into a routine around the dialysis. 

The dialysis itself is not really bad at all.  Except for a busted ankle at the moment, I still come off my treatment and do everything I did before I started dialysis.  I usually do my dialysis late afternoon and come off about nine o'clock. I go straight to the gym, to tennis or to the driving range and then get home around midnight, hit the hay and then up and back at the desk at about 5.00am.  I do that every second day.

Sometimes at the end of the week I am feeling the pinch so it isn't to unusual for me to go to bed early on a Sunday night.  But I am up ready for work bright and early on a Monday morning.  If I didn't tell anyone I was on dialysis, absolutely no one would know.  Definitely possible to continue working.

   

[paul.karen]

Sorry to those who cant get back to work.  I hear so many people are just to drained and i can understand.

I start training for PD tomorrow which i think is much easier training then Home hemo.  I feel confident i will be able to do this i have to do it.  Sadly i do have to lift heavy stuff now and again.  So im hopeful i can be dry during the day.
I am also HAPPY that they are training me right away on the cycler rather then having me do a few months of manuals.  Cause i couldnt do any where i work.  I will still be trained on how to do manuals just in case.

The worst part and i hate to say this is soon in a year or two it may be more cost effective for me to quit my job and go on disability.  Taxs are going crazy here in jersey and we will have to start paying this stimulus plan back soon.  Not like it is free money we are bailing everyone out with.

[Tinah1968]

Paul,

I never took time off of work after starting Dialysis. I starrted on a Friday and got home hungry and my first day I was sleepy but that is all...  I still worked 45-50 hours a week and still do right now and I have been on Dialysis going on 3 months..  I hear that PD is easier and it may be but I didn't have any problems going to the Dialysis Center and then going to work the next day. I have been very lucky.

I need my job that is about the only thing that keeps my mind off Dialysis. I am so busy throughout the day that i just don't have time to think about it. yet reality strikes 3 times a week and that is okay too... I alwasy seem to have more energy after Dialysis. I didn't get sick or weak and I honestly think it is becasue I had changed my Diet about 3 years ago. i started eating what they were going to let me eat once I started Dialysis. I did that so that the transition would not be so hard on me and my body. Small chages a little at a time worked for me. I hope your dialysis is just as easy.

[joyfulmother]

I felt great after starting PD.  Do you have to get a fistula?  I never did.   I don't know about the heavy lifting though...

[twirl]

I went back to teaching the day after I had dialysis and I taught from two years -
I went to dialysis on MWF until 10am
it got harder and harder
I got to school at 7am and had no conference period
I think you can still work
do you pick up heavy equipment
that could be a problem
cheryl

[paul.karen]

Sorry you felt worse and worse twirl.  I know you liked to teach and im not sure why dialysis made you feel worse instead of better.  Goes to show it effects everyone a little different.  Sadly

And yes Joyful i do lift some heavy stuff but try to limit it.  This is why i want to be dry during the day.  Fingers crossed.
No i didnt get a fistula.  Thought about it.

[willowtreewren]

My husband and I run our own business so we had a little flexibility when he went on dialysis. He got his fistula just before school started and was working the next day. We do NxStage at home and he is able to get up from the chair and go right to work at whatever task he wants. Even when he was in-center, before our training started, he was not slowed down by dialysis. We will be working our normal 50+ hour week this year with dialysis happening in the evenings after we get home.

Each person is very different. I feel very fortunate that my husband is able to continue working. It would be hard to run the school without him (no, probably impossible!)

Aleta