hi everybody.
hope your all chillin, well as most of you kmow i had my fistula done last week, so as my dialysis draws closer, icant help wondering about my job.
at the moment i'm on the sick and have been since novenber 04, my employer being very good and said they will try and sort out part time work for me, which is great and i want to carry on working for as long as possible, but the only type of dialysis suiteable for me is hemo?
which as we all know means 3days a week at the hospital hooked up to a machine for approx, 4/5 hour at a time?
so as much as i love my job (and i do love it) i don't want to spend 3 day at the hospital, 2 days at work? and have no time for myself or life and to have some fun etc!
but i don't like the idea of not working and being on benefit, i know i'm on the sick at the moment, but that because i not well at the moment and can't work, theirs a difference, i still think of myself as having a job?
and keep telling myself i will soon be fit for work, now im not shore if i'm kidding myself about work, and benefit the best opption?
so how do people strike a balence between, work/treatment?
thanks for listerning, all the best take care
LES
what about work?
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what about work?
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What about work?
Les--
Why is hemo the only type of dialysis for you?
I was given the choice of peritoneal dialysis or hemo. I chose PD. With PD you do your exchanges at home and, by using a cycler at night, you can eliminate daytime dialysis, or at least cut it down to one daytime exchange. This leaves you lots of free time for work, play, etc. I don't know about the UK, but here in "the colonies" you sometimes have to pressure your doc into allowing you to do peritoneal. Check it out.
Good luck. --Bruce
Why is hemo the only type of dialysis for you?
I was given the choice of peritoneal dialysis or hemo. I chose PD. With PD you do your exchanges at home and, by using a cycler at night, you can eliminate daytime dialysis, or at least cut it down to one daytime exchange. This leaves you lots of free time for work, play, etc. I don't know about the UK, but here in "the colonies" you sometimes have to pressure your doc into allowing you to do peritoneal. Check it out.
Good luck. --Bruce
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Rachel in NY
- Posts: 650
- Joined: Fri Apr 23, 2004 1:11 pm
- Location: NY, USA,
Hi Les!
I was also only able to have hemo. At some point I was on a very late night shift, which was full with working people. Provided that your hosptial isnt' too far from where you work, you can spend the day at work, go to the hospital, hook kup for 4 hours,and then come home to sleep.
There is also a morning shift. You won't get to work at 8:30am, but its still an option.
Find out the differnet time slots available for you, and see if you can find one that doesn't conflict with your work schedule too much.
Even if you tolerate the dialysis 'okay', but get a bit queasy and stuff at the end.. you've got the whole night to recouperate for the next day at work.
If you feel yucko afterwords like I did, a morning shift won't work too well for you. Bc you'll never be able to get to work afterwords.
I personally was a student, and not working. I didn't go to school either that year due to various health issues. I was on dialysis for about a year and some, and then I got my transplant.
So anyway, first step is to get a schedule of avialable timeslots, try to get into an evening slot - at least to start (till you see how well yoru body tolerates it), and go from there
Good luck!
ps. I don't know what kinda job you do, but you can tell your boss you have 4 hours of solid un-interrupted time to do 'research' and stuff
YOu shoudl get paid overtime
I was also only able to have hemo. At some point I was on a very late night shift, which was full with working people. Provided that your hosptial isnt' too far from where you work, you can spend the day at work, go to the hospital, hook kup for 4 hours,and then come home to sleep.
There is also a morning shift. You won't get to work at 8:30am, but its still an option.
Find out the differnet time slots available for you, and see if you can find one that doesn't conflict with your work schedule too much.
Even if you tolerate the dialysis 'okay', but get a bit queasy and stuff at the end.. you've got the whole night to recouperate for the next day at work.
If you feel yucko afterwords like I did, a morning shift won't work too well for you. Bc you'll never be able to get to work afterwords.
I personally was a student, and not working. I didn't go to school either that year due to various health issues. I was on dialysis for about a year and some, and then I got my transplant.
So anyway, first step is to get a schedule of avialable timeslots, try to get into an evening slot - at least to start (till you see how well yoru body tolerates it), and go from there
Good luck!
ps. I don't know what kinda job you do, but you can tell your boss you have 4 hours of solid un-interrupted time to do 'research' and stuff
YOu shoudl get paid overtime 
"When life keeps giving you lemons, get to work and make a tall frosted pitcher of icy cold lemonade."
Hi Les, like you I was told HD was my only real option. I also work full time, I work for Social Services but on the front line caring. What type of work do you do? This wil dictate your ability to work, however don't just jump in to a part time contract. Employers have a legal duty in the UK to make reasonable adjustments for you. I am fortunate that my union UNISON has an agreement with the council (I'm sure this is a nationwide agreement that involves all councils) where I am given time off, with pay for dialysis, I am also sure this is so for all local government employees including the health service etc. Although I must say I have had to fight for it to be deemed as a outpatient appointment and not sick leave. If your employer is not willing to do this, I think there is a government scheme where your wage is topped up (through a tax credit) if you have to miss some work through having regular treatment. How much this exactally is I am not sure, I think its something to do with disabled workers tax credit.
Its not unusal to be off for several months before you need dialysis, I was off from feb 04 to may 04. I still have some problems to sort out with my employment and will be posting details of a letter I have drafted shortly.
Its not unusal to be off for several months before you need dialysis, I was off from feb 04 to may 04. I still have some problems to sort out with my employment and will be posting details of a letter I have drafted shortly.
Hi Les ...
like you I also had HD
it depends a lot on what job you do for starters ... and even more so on what you HD unit does too ...
my unit had 3 periods when you could dialize morning afternoon .. and for folks like you and me ... night ...
if your lucky and you take well to HD and can get into a night unit then you could do well mate ...
I continued to work full time all the way though my dialysis ... and never needed to reduce my hours ... but I still consider myself one of the lucky ones ... hope you are too
all the best with your new fistula and dialysis Les
like you I also had HD
it depends a lot on what job you do for starters ... and even more so on what you HD unit does too ...
my unit had 3 periods when you could dialize morning afternoon .. and for folks like you and me ... night ...
if your lucky and you take well to HD and can get into a night unit then you could do well mate ...
I continued to work full time all the way though my dialysis ... and never needed to reduce my hours ... but I still consider myself one of the lucky ones ... hope you are too
all the best with your new fistula and dialysis Les
Hi Les
I think it has alot to do with the individual and what work they do.
My husband still works 24/7!!!!!!!!!!!, and nothing even HD 3 mornings a week wont slow him down.
He always says that when he is not at work he feels worse than when he is. He has an advantage in that it is his own business, so he can come and go as he pleases and he doesnt have any bosses to answer to,but he would much rather be working than not.
Les at the end of the day you have to make the decision yourself.
from what I can gather you havent started dialysis yet, so give it time and see how you feel after, as people vary. Most days Pete comes out and is as fit as a fiddle, but there are the odd days, when maybe they take too much fluid off, or he generally feels crappy and goes home to bed.
Anyway good luck in whatever you decide
Love Kelly
I think it has alot to do with the individual and what work they do.
My husband still works 24/7!!!!!!!!!!!, and nothing even HD 3 mornings a week wont slow him down.
He always says that when he is not at work he feels worse than when he is. He has an advantage in that it is his own business, so he can come and go as he pleases and he doesnt have any bosses to answer to,but he would much rather be working than not.
Les at the end of the day you have to make the decision yourself.
from what I can gather you havent started dialysis yet, so give it time and see how you feel after, as people vary. Most days Pete comes out and is as fit as a fiddle, but there are the odd days, when maybe they take too much fluid off, or he generally feels crappy and goes home to bed.
Anyway good luck in whatever you decide
Love Kelly
Life is like a box of chocolates, you can never get enough
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JMan
- Posts: 3473
- Joined: Fri Apr 23, 2004 10:21 am
- Location: Lives in a slightly weird bit of Shropshire called Telford!
Interesting thread this.
I know those who've worked on dialysis and those who haven't.
What I have seen is that it certainly seems easier (in many cases) to work if you've had a job previous to illness, then if you come into work with a past 'history'.
just my 2p's worth. (and still seeking his 'niche' )
I know those who've worked on dialysis and those who haven't.
What I have seen is that it certainly seems easier (in many cases) to work if you've had a job previous to illness, then if you come into work with a past 'history'.
just my 2p's worth. (and still seeking his 'niche' )
Last edited by JMan on Fri Feb 04, 2005 11:45 pm, edited 2 times in total.
"Dialysis! What is this? The dark ages!"
L. 'Bones' McCoy, ST"
Read my blog:)
Live to Fly
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L. 'Bones' McCoy, ST"
Read my blog:)
Live to Fly
http://www.flickr.com/cybercast
My view, for what it's worth, is that it is best to work , if you can.
Work is great diversional therapy. To stay at home all day contemplating your misfortune is the quickest way I could think of to make you feel well and truly down in the dumps. It's good to get out and about and to all intents and purposes be as "normal" as the next person for a while!
Work is great diversional therapy. To stay at home all day contemplating your misfortune is the quickest way I could think of to make you feel well and truly down in the dumps. It's good to get out and about and to all intents and purposes be as "normal" as the next person for a while!
I didn't work the last time I was on dialysis - it was in the days before EPO & I was sooooo anaemic. Anyway - I'm heading for esrf again but this time I work from home and so I plan to continue working but maybe with slightly reduced hours. Hey - if I do PD I can 'do a bag' whilst on my computer! Haven't dialysed for 12 years now - I wasn't scared the last time - this time I am. I guess life has been so good over the last 12 years (backpacking, marriage & 1 child!) that I'm scared of it all going bad when this kidney finally goes - as it will - as my consultant reminds me every appointment. 
You know, sometimes I find it easier to deal with the physical side than the whole mental/emotional side of things.
You know, sometimes I find it easier to deal with the physical side than the whole mental/emotional side of things.
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JMan
- Posts: 3473
- Joined: Fri Apr 23, 2004 10:21 am
- Location: Lives in a slightly weird bit of Shropshire called Telford!
Just my 2p but I find that things get more scary the older you get, and the second time round (or third or 4th) you've learnt more & seen more by then, and your frame of reference is broader.
Sometimes ignorance IS bliss.
Definition agree with wing.. Work if you CAN.. but don't feel bad about it if you can't.. And don't take notice of peoples unfounded judgements. There is a lot of ignorance around in all areas of humanity.
I totally agree sometimes the physical can be harder. I found counselling helped me when I really needed. ( I was told I needed a heart valve replacement, not what you want to hear after a 3rd transplant)
There are good bits, and bad bits
like I say.. just an opinion. better go to bed.. its Friday,.. just
Sometimes ignorance IS bliss.
Definition agree with wing.. Work if you CAN.. but don't feel bad about it if you can't.. And don't take notice of peoples unfounded judgements. There is a lot of ignorance around in all areas of humanity.
I totally agree sometimes the physical can be harder. I found counselling helped me when I really needed. ( I was told I needed a heart valve replacement, not what you want to hear after a 3rd transplant)
There are good bits, and bad bits
like I say.. just an opinion. better go to bed.. its Friday,.. just
"Dialysis! What is this? The dark ages!"
L. 'Bones' McCoy, ST"
Read my blog:)
Live to Fly
http://www.flickr.com/cybercast
L. 'Bones' McCoy, ST"
Read my blog:)
Live to Fly
http://www.flickr.com/cybercast
Heh - yes you are right - ignorance can be bliss sometimes!!
Les - it sounds as if the concept of having a job is pretty important to you - more so than you actually enjoy the work. I can relate to that - I like to feel I'm employed when I'm off work long term sick - I find it helps my self -worth. Having said that - it can be really hard and isn't always the right thing to do. Last time I didn't work I got involved with Amnesty. I believe in the work that they do and for the first time I actually had a chance to write letters to all the leaders of different countries to ask for release of certain prisoners (they are all listed in Amnesty magazine). Anyway - I found that having that focus was so helpful - like I wasn't dwelling on what happened to me - but actually making a difference to other peoples lives. I thought it migth interest you - take care Nicky
Les - it sounds as if the concept of having a job is pretty important to you - more so than you actually enjoy the work. I can relate to that - I like to feel I'm employed when I'm off work long term sick - I find it helps my self -worth. Having said that - it can be really hard and isn't always the right thing to do. Last time I didn't work I got involved with Amnesty. I believe in the work that they do and for the first time I actually had a chance to write letters to all the leaders of different countries to ask for release of certain prisoners (they are all listed in Amnesty magazine). Anyway - I found that having that focus was so helpful - like I wasn't dwelling on what happened to me - but actually making a difference to other peoples lives. I thought it migth interest you - take care
NickyJMan said it well, work if you can but don't beat yourself up if you can't. I know that in my case I have to work. My insurance and paycheck are necessary incomes. With that in mind I had to find a form of dialysis that I hope will work for me. I think that peritoneal dialysis (PD) seems to be the best way to have the hours free to work during the day. Maybe you should look into it.