Do you work?

[MaryD]

I am soon to start CAPD.

I am retired, after 50 years of working full-time and raising two kids.  I don't think I would be able to work more that 2 days a week if I was still working.  I am constantly tired and find I have to pace myself.  If I get REALLY tired it takes 2 - 3 days of frequent snoozing to recover. 

At the moment I seem to have appointments after appointments too.  That would be hard to fit into a working schedule.

[willielt1]

yes I work 50-70 Hrs a week ...

 I Deliver #2 heating Oil In NY ... ( Queens to Manhattan )
 
 I make Roughly 24-36 Stops a Day.
Granted I have The Summer Off .. But Winter Kicks My Ass...

 I Do Dialyisis after work from 6:30 to 10-30 ... Home By 11pm .. In bed By 12- or 12:15... Up for work at 5:30am ...
 
 March Of 1998 I recieved a Double Lung Transplant Due to Cycstic Fibrosis ... and a Bad Skiing accident..
 My Kidneys Failed Last Year about 16 Months ago.. because of the Anti Rejection Meds ....(Nerol)
 
 I am Now on Prograf .. 10 MG of Prednision.. .Lisinopril 10 MG.. .MY BP is 117/76... 

[angela515]

I haven't worked in 7 years... I'm extremely tired and exhausted all the time even when I do nothing... so I'm still on disability for my Lupus. However, it's Christmas season and this is my first year I've been out of my parents house and on my own again in 7 years and I need extra income so I been looking for a part-time job and just today I finally got hired at McDonald's. I know it's not a glamorous job but it's extra income that will help out the rest of this year... I just hope my body can hold out for the rest of this year and allow me to do it! Will be interesting.

Angie <3

[Joe]

Best of luck Angela, hope it works out for you.

[Lovebelle]

Before finding out about CKD I used to work alot of hours as a nurse in the hospital. I was only considered part-time but picked up extra hours to make 40+ hours a week and my employer still provided full health insurance as part-time status. I used to really struggle (probably because I was walking around with a creatinine of 9 and didnt know it) and would feel like a zombie at work. When I first found out and was hospitalized I missed months of work because there were many complications with the first PD cath, peritonitis, severe anemia etc. Anyway when I returned I decided to stick with part-time hours and now do about 16hrs a week. I gotta tell you, sometimes its a struggle to do even that. I guess I am blessed to work in healthcare and have a boss that is accomodating (It also helps that I work directly with my PCP who sees me at my best and worst). My biggest battle is severe fatigue I get from my medications. I am constantly trying to schedule my meds around work because if my timing is off, I will literally fall asleep and I am not as alert as I need to be in my setting.

I love working with my patients and going through what I do helps me interact with people who are having a rough time themselves. But I do feel guilty at times that I dont work more. Im young, only 32 and feel like I should be working a full schedule like others do. But Im trying understand that every situation is different. For me some  weeks I feel great, but this week so far I feel pretty bad. Heart beating our of my chest, feel like I can barely get myself going. I dont know. i guess I have to accept things the way they are. I do qualify for SSD now, and am lucky that I can still work and collect (though they do deduct since I do work). I am what my family calls a driven, highly mostivated person (have more than one degree, always wanting to learn new things) so its an odd place to be in, working few hours and collecting disability, but it is what it is.

[Grumpy-1]

I started D two years ago.  Just about ready to retire, but still working 9 hour days Plus 3 hour commutes.  I'm on a PD and a cycler at night and in order to complete a full cycle during the night, my weeknights are none existant.  I have to hookup as soon as I get home from work, eat during the pause, then hook back for the night shortly after eating.  I have to do two manual exchanges during the day at work.  I'm lucky that I have an office with a door and close it for exchanges.  I have great people that I work for and with.  They all know if my issues and needs and are very supportive.  Most months I only have to take a couple hours every two weeks (for labs and Dr visits) so my sick leave will cover that.  My biggest issue is being tired !!!!!!  There have been days when I've had to take off and just sleep.  And one time this week where I was sooooo tired at work the instead of trying to get home, I just found a cheap hotel room and slept for 7 hours, then headed home.  I have also found that some days at work, (if I'm not drinking enough water to keep hydrated) I will get dizzy and light headed.  As I said before, I have some great co-workers and they seem to keep an eye out for me.  If they see I'm a bit dizzy, they'll grab an arm and make me sit down and make me drink some water. 

[Joe]

I am so with you Grumpy-1. My prescription just changed so I'm doing a manual in the afternoon and coming off the cycler with 1500ml in me for the next 3 hours. I drain that at work and am home for the afternoon manual. I'm finding that my BP is low, in the 90/50 range, and that is making me light headed. Saw my PD nurse yesterday and she got the Doc to adjust my BP meds as well as using a 1.5 for my afternoon fill. Will see how things go over the next week until I see the Doc for lab results.

[Grumpy-1]

Joe - understand.  I had high blood pressure and was on meds for it.  After a few months of PD, the blood pressure dropped enough to come off any blood pressure meds.  Mine blood pressure now runs between mid-90 / mid-60 to low 120 / mid-90.  I notice that when I'm light headed, my blood pressure will be low and I think it is more from becoming dehydrated than anything else. 

[Joe]

I certainly wouldn't mind coming off the BP meds. Feeling better today with the switch. Hoping that keeps up.

[Lowilson]

I am on short term disability since starting in center hemo dialysis dec 28th. I need to decide about returning to work. I get 25 weeks at 100 percent of pay I am trying to determine how long I should stay out to get adjusted to dialysis before returning. I am very scared to return because when I left I was very fatigued and having hard time getting through the day. I am afraid when I return that I will not be able to perform my job functions adequately and jeporodize my job. I am not sure if I can return part time and still get short term disability to make up for difference? If I return and can't hack it can I go back out and use rest of short term disability then move on to long term? Has anyone got any opinions or experience that can help me decide what do?

[KarenInWA]

I am on short term disability since starting in center hemo dialysis dec 28th. I need to decide about returning to work. I get 25 weeks at 100 percent of pay I am trying to determine how long I should stay out to get adjusted to dialysis before returning. I am very scared to return because when I left I was very fatigued and having hard time getting through the day. I am afraid when I return that I will not be able to perform my job functions adequately and jeporodize my job. I am not sure if I can return part time and still get short term disability to make up for difference? If I return and can't hack it can I go back out and use rest of short term disability then move on to long term? Has anyone got any opinions or experience that can help me decide what do?

The best answer I can give you is to contact your STD insurance company and find out what you can do. I have Prudential through my work, and I just worked the past 2 weeks PT. I am  getting paid disabilty for the 4 hours a day I am not working. Now I am ramping up to 6 hrs a day, so I will be getting paid for 2 hrs a day disability. I had my transplant back in November, so this is how I am returning to work.

What kind of work do you do? I work in a call center setting, so my job is fairly easy, physically. I did not take any disability while starting D because I was doing okay, despite having an hgb of 8.2. I felt a LOT better once my hgb got into the "normal" range. I felt stellar when it was 13! But, they don't want you to be at 13 when on D, due to possible complications. (at least not through help with epo/Aranesp). I am ramping up my return to work because of general fatigue, which is normal after such a big surgery. The first week was a little rough, but this second week has been a lot better (except for the snow. I HATE the snow!)

I would make sure you are getting adequate treatment for anemia, if that is a problem. Then find out through either your insurance co, your employer, or your union if you have one, on what you should do next.

KarenInWA

[Lowilson]

My work can be very physical,thankfully,  not continuous, but is very demanding.  My hemoglobin is low. 8.8. I went on short term because I was exhausted mentally and physically. Too much toxin my system.  2 weeks later I started dialysis now getting cleaned out. They are giving me aranesp in dialysis so my fatigue is improving. The dialysis still whips me because my blood pressure bottoms out. So I am not sure how I will feel when working. It will be very very long day. I afraid I will return too soon and do crappy job at work get myself fired. Sometimes I think I ought to just finish out my short term and roll into long term but then I think I lose my medical insurance. But I am not sure if this is good idea. Is there anyone out there who has had experience with this. In the mean time I will contact my provider to find out about part time options. Thanks for sharing your experience,

[Jyhjones]

I want to work and have interviews set up but afraid that the uncertainty of dialysis will make my work effort unsuccessful

[Larrystrng]

I guess that I have been very lucky. I am a Warehouse Manager and have never stopped working through my kidney failure and dialysis journey. I stay as active as possible and EPO shots help as well.

[+attitude]

I am currently unemployed and on disability. I am completely willing and able to work.  I worked full time the entire duration of my first dialysis and post transplant. I was laid off in 2009 due to the economy.  I work in metal manufacturing. I am actively seeking part time work. I miss my toys 

[lmunchkin]

Attitude, is that a V-rod in your picture?  What year is it if it is?  Sure looks similar to a HVR.  The tank is eeriely like a V-rod tank!  I almost got one in 2003, but they are so quick, I would have gotten hurt bad on a toy like that, not to mention the PRICE!

Oh sorry, got off track there with your picture and all.  My husband, John,worked about 7 yrs on dialysis full-time.  In Jan. 2011 he just couldnt do it anymore, thus resigning.  I am surprised he lasted as long as he did and am very proud of his dedication to his work at that time. He worked so hard for so long.

I was leary at first, because of the income shortage, but looking back, I was so glad that he finally gave it up.  He did his time, its time to enjoy the rest of his life in retirement.  I know he is all bored, but when "Mama" gets home, well, he is thrilled.  I love him so much.  lol

I think its up to how someone feels physically as to whether they should continue to work.  John got to where he dreaded going to work, and when the love for it is gone, it's time to give it up!

God Bless,
lmunchkin