I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Working while on Dialysis => Topic started by: kitkatz on February 19, 2008, 10:35:55 PM
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Am i the only patient completely crazy enough to have been working for the entire time I have been on dialysis?
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You and this lady http://ihatedialysis.com/forum/index.php?topic=7074.0
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I prefer to think of you as "courageous". :2thumbsup;
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I think maybe it does... :rofl; J/K :cuddle; we loves ya and I don't know how you do it.
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Not at all Kit. I can think of one or two who SHOULD be patients. Totally and completely Krazy people or as my dad would say, nuts--absolutely kooked. Keep up the good work!
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I work...and sure wish I didn't, some times!!! It gets awfully hard!!!
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I was asking myself yesterday how long I think I can keep this up! Some days it all seems to be too much...but I haul my arse out of bed and start another day. Guess that's what they call survival........
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I was single and worked full time the entire time I was on PD from Nov '83 to Dec '87 when I received my 2nd transplant. I had to quit work tho' in 1998 when I realized I'd developed some serious heart problems from the anti-rejection medication. (I took Sandimmune and then Neoral.) I had 2 heart attacks in 2 months and 4 angioplasties that year and had become really anemic from losing blood during the procedures, plus I wasn't making any new red blood cells any longer. I left work for what I thought was going to be a short 1 or 2 month recuperation period and have never been able to go back. Quitting work was really hard for me. I enjoyed my job and had worked for the company for 24 years. I about went crazy at home the first year until we finally bought a computer and I was able to rejoin the land of the living.
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Kitkatz, count me in on the crazy side. Working makes me feel alive.
This morning, I walked out of a meeting and just loved my life. Working makes me feel smart, productive and useful. (on my good days) on my bad days, I feel under-appreciated, exhausted and generally pissed off. Thank goodness that most days are just average. I get enough peaks like this morning to remind me that everything is going to be ok.
In a few years when I stop working at this job, I plan on going back to school. I think that using your brain really affects quality of life. Susie and I had quite a few talks about that. She was trying to transition back into the working world and felt that she didn't have much to offer. I had to remind her that being an admin here on IHD was a job. Susie may not have been on any payroll, but she and Sluff and our mods work. It is a business, its just that the payment is in the emotional support and friendship - which is priceless.
In my business when someone uses their education and experience in a non-profit capacity - we call it pro-bono work. Our IHD team does a lot of pro-bono work - "Done without compensation for the public good".
So, there, I've taken a "Completely Crazy" thread and manged to talk about work and how hard our admins and mods work and how much I love and appreciate them. So, there is my work ethic, completely selfish. It makes me feel good and gives me a platform to be crazy in my own way.... And it gives me yet another chance to say how much I miss Susie.
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I"m proud to say I'm so completely crazy I never stopped working. If people didn't see the bandages on my arm from time to time, they wouldn't have a clue. Although I do have trouble remembering things and focusing from time to time, which increases the percentage of possible mistakes. And some days I spend the lunch hour with a pillow on the floor of my office.
I couldn't stop working...I'd miss all the frivolity and laughter.
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So in other words Crazy is good. ::)
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I guess I'm completely nuts!!! :urcrazy;
I have worked the entire time throughout my dialysis, and still am working. I'm even the first to sign up for overtime at work (gotta pay the bills)
I enjoy working, because not only does it get me out of the house, I am accomplishing something...It's a wonderful feeling.
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I really don't think its nuts at all. Its about being able to pay the bills. Sounds perfectly sane to me!
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I never stopped working also. To be frank apart from paying the bills and providing an income (well it's actually all about affording cat food for the 4 legged Mistress :) ) I actually find it a WONDERFUL diversion from dialysis and kidney failure. Not only do I get to exercise my brain and do something (mostly) useful with it in my job (I work in IT) but there's also an important social aspect of getting out and spending time with my co-workers etc.
I know a lot of people quit work when they hit ESRD - and I can certainly understand why due to lack of energy, disruption etc - I guess I have been lucky - before I started dialysis I found myself a non full time job and they have been VERY understanding of my needs to go to dialysis and that some mornings I am just too tired to come in. In fact I don'tthink my boss has ever questioned me in terms of coming in later than "normal" or anything.. but then again he also knows that I often stay later than others and don't just leave at 5 - I put in my time when I can and also when it counts (ie: if there is some kind of meltdown I don't disappear home or something).
If I had to stay at home with no work in between hemo sessions I think I'd drive myself crazy from boredom and ONLY focusing on the medical side of things. When I'm working "in the zone" I can even go a whole afternoon and have not even thought about a drink (great for fluid levels!) and I actually feel good doing something, earning money and spending time with my colleagues and friends.
So I guess if that makes me crazy well where's the straitjacket and padded room?
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My Randy is also completely crazy. He will work until he drops. That's what I tell friends who ALWAYS say, "He's still working? I can't believe it!"
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kitkatz, your not crazy, I admire you :bow;. Len tried to work about a year after all his medical stuff started, somewhere around 2002 (for about a week) and he just couldn't do it. He couldn't stand for long periods of time or walk more then a few steps before he was out of breath. The doctor's told him he had to quit or he was going to die. Lately, since he's transplant, he is thinking about trying to return to work (if anyone will hire a 60 year old that hasn't worked in 7 years), but some of his doctors are saying that don't know if he should or can do some of the things required in he's profession. His old job required travel and Len will never be able to fly again, so that is becoming the biggest challenge right now. Time will tell. I have become a coupon queen and have learned how to live on peanuts (Social Security). I do worry about Len's mental state (boredom has become a big issue at our house), he likes to keep his brain engage, but lately he is having memory problems from some of the rejection medications.
To all dialysis patients that are able to work, my hat is off to you. :cuddle;
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Kitkatz, you are not crazy, just courageous and give others great hope. I miss work more than I can say. It wasn't my choice. I think it gives purpose for the day, helps keep you in social settings, and helps you feel as close to normal as possible. I keep finding tons of stuff to fill my hours and expand my mind, but it is not the same as going to work everyday. Working all this time, may be part of your key to success. You are an inspiration to all of us.
Meinuk, great post! You always make me enjoy my world more! You and AlohaBeth just seem to love everything about life--she has your same spirit.
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kitkatz, your not crazy, I admire you :bow;. Len tried to work about a year after all his medical stuff started, somewhere around 2002 (for about a week) and he just couldn't do it. He couldn't stand for long periods of time or walk more then a few steps before he was out of breath. The doctor's told him he had to quit or he was going to die. Lately, since he's transplant, he is thinking about trying to return to work (if anyone will hire a 60 year old that hasn't worked in 7 years), but some of his doctors are saying that don't know if he should or can do some of the things required in he's profession. His old job required travel and Len will never be able to fly again, so that is becoming the biggest challenge right now. Time will tell. I have become a coupon queen and have learned how to live on peanuts (Social Security). I do worry about Len's mental state (boredom has become a big issue at our house), he likes to keep his brain engage, but lately he is having memory problems from some of the rejection medications.
To all dialysis patients that are able to work, my hat is off to you. :cuddle;
Since my husband became disabled (not kidney related, it was a severe back injury) he has gone back to school. He's at seminary and sometimes can only take one class a semester, but it's been great for him. He really needs the mental stimulation and it gets him out in the world a little. They have a special handicap chair for him to sit in which makes it a bit easier. He's finally finishing his masters in theology (maybe set a record for the time it took ;) ) but he got straight A's and it is quite an accomplishment!
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Not easy but bravo for those can.
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I am crazy too then I just came back to work and I LOVE IT. I think I went crazy sitting at home for so long.
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I guess I'm crazy too! I've only been on dialysis for a year, but have continued to work and hope to work as long as I can. However, I am exhausted!!! I keep praying for strength.
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You guys give me so much hope. I am still predialysis, but I have my PD catheter in place for when the time comes! I plan on continuing to work. My group here is so understanding even now. They don't say anything when I have to go to the clinic to get my tube 'flushed.'
Thank you so much for being here and willing to share yourselves :bow;!
NolaGail
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I worked while on dialysis for several years and it got so hard
but I was a lot happier while I was working
I miss my school
I have a twin sister in good health with two good kidneys
and she will not let me have one
she teaches 2nd grade
and she is ALWAYS complaining about how bad her students are, how much works she has, it is never ending
I'd like to say WTF, you have kidneys and a job
but on the other hand; I have three wonderful children and a husband who is way above average, he's a coach
we taught at rival schools and that was so much fun
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I sometimes wish I could do my job, however I've been an Over the Road truck driver for the past 30 years. Not much chance of managing that and 3 days of dialysis per week. Just started back on dialysis in Dec 07, haven't really felt good enough for long enough to seek employment that I could do or an employer who is willing to work around my dialysis schedule. I still keep my eyes open, Thank God I'm medically retired by Social Security and made a good enough living my working career to receive enough to manage. My wife did have to go back to work to fill in the gaps.
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How can people afford dialysis who aren't working?
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Count me in as totally crazy - I worked while I was doing Hemo and PD and still working after my transplant. Kept me part of the human race, kept me feeling like perhaps I was normal, kept the insurance premiums paid and kept the bills paid. I also appreciate being around people during the day and not being isolated. I have a job that allowed sick leave for various surgeries, hemo appointments, etc. Not saying it was easy. Especially the year before I even started dialysis - energy level was very low so not much energy left for the family in the evenings. But they were and continue to be a great support system.
Have a great day everyone.
Sandyb
:bunny:
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Kit Otto is praying to be crazy like you. He says work will keep him from laying around all day.
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How can people afford dialysis who aren't working?
In Australia dialysis is provided under the medicare system so the govt pays. All the drugs are also provided under the PBS scheme so at a vastly discounted cost to patients. Indeed since I started at the unit I don't even pay up front for my aranesp shots - the unit just gets them and adminster it. Those on social security can get PBS meds for something like $5.
I feel very lucky to live in a country that is so supportive of folks with kidney failure. It's not perfect for sure but it could be much worse.
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Not crazy at all! I feel so much better now that I am working. Apart from the paycheck, it feels good to be active!
In this country, dialysis is free if you don't have insurance. If you do have, the insurance has to pay. Since I lost my goverment job with subsidized health insurance, I am getting everything free - dialysis, tests, and any operations (I had to have one on my graft recently). In fact, there is no difference in treatment since I have no insurance, thankfully.
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We also don't pay out of pocket for Aranesp and here in Ontario there is a drug program that is adjusted according to income.
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I still work my online business. I also have retirement and Social Security Disability.