CKD and Your Job (Part One)

If you’ve been diagnosed with Chronic Kidney Disease (CKD), you need to know some things about how this may affect your life and your work.

According to  The Kidney Fund:  “The term ‘chronic kidney disease’ (CKD) means lasting damage to the kidneys that can get worse over time.  If the damage is very bad, your kidneys may stop working.  This is called kidney failure.  If your kidneys fail, you will need dialysis or a kidney transplant in order to live.”

So, I can say with some certainty that everyone in dialysis went through CKD, although some may not have known as they passed this point along the way.  Too often people end up in kidney failure without knowing they were experiencing CKD.  I was “fortunate” to know I was going through CKD but frank;y, no one said a thing about what that meant.  I, as a patient, was totally uninformed and, if anyone should know what the diagnosis meant, I should have.  That’s why I started this blog. I want to inform people about about kidney disease, CKD and Dialysis.

The first time I can recall I was told I had kidney problems it was about 2001.   I was told I had “proteinuria” like I knew what that was.   I had protein in my urine and the doctor looked at me like I knew what he was talking about yet I was clueless. I just went about my life with no changes at all.  I continued working 40 to 50 hours a week, eating the same diet, not watching my blood pressure, diabetes, and not exercising or keeping myself in shape.

By 2003, I was feeling the initial effects of CKD and showing many of the symptoms yet I still didn’t know what this meant.  (See the note at the bottom of this post for more information about CKD symptoms.)   At one point, the potassium level in my blood was so high the doctor said I risked heart failure.  I was given this terrible tasting crap to drink in HUGE amounts (Sodium polystyrene sulfonate with sorbitol (Kayexalate) . Somehow I survived but it required weekly visits to the doctor to monitor my levels.  Employers don’t like it when you have to interrupt your work day with doctor visits constantly!

By 2005, I was in some serious trouble but I still wasn’t aware of what was going on. I was a single parent and, as any parent knows, there is no opportunity to rest.  Being responsible for a child is a full-time job by itself.  Doing that and working full-time is about all one person can do.  So aside from work, there were responsibilities at home that couldn’t be put off.  I was constantly cold, perpetually tired, easily winded,  my skin itched everywhere and, most importantly, I couldn’t concentrate and was often confused in my thinking which most effected my work as a computer programmer.  I later discovered that this is due to the build up of toxins in the blood that my under-functioning kidneys were not removing.  As the toxins build up they effect all the other parts of your body including your brain which in totally dependent on blood.  It’s the toxins that adversely effect the brain’s operation; memory loss, confusion and lack of concentration are the results.

At that time.  I was working for a large, upscale retailer and doing some very complex work for a manager who was a stickler for details.  I kept making mistakes and he didn’t like that.  I was working as hard as I could and even taking on extra work to redeem myself but it seemed I couldn’t do anything right.  I’d been doing this kind of work very successfully for 30 years but suddenly I couldn’t seem to do anything right.  I started to doubt myself and my abilities.  I thought perhaps I was in the beginning of Alzheimer’s (my Dad had it long before he died).   I was called into the HR manager’s office and presented with a memo detailing his complaints against me and setting out some expectations.  There would be a review in 30 days to see if I improved.  It was a devastating moment in my life.  I had never been reprimanded and my work had never been called into question in my entire 30+ year career.

In retrospect, I should have connected the two events; my CKD and my work problems.  A couple months earlier, I had made my manager aware of my disease because I had to take time off for medical issues; tests, and constant doctor appointments, but I didn’t connect my work problems to my medical problems and he certainly didn’t either.  The HR department probably didn’t know about my medical issues and I didn’t think to make them aware of it.  If I had a heart problem or cancer or some more popularly known medical issue, they might have been able to connect the dots but not much is known about kidney failure and the impact in the workplace.

Over the next 30 days, I did everything according to the memo.  But one day, I forgot to submit my weekly summary on Friday as required in the memo and the next Monday, as I was standing at the urinal in the bathroom,  the manager came in and told me to meet him in the HR manager’s office.   I did as instructed as was handed a letter informing me I’d been fired.  In spite of the shock, I got myself together and gathered up my belongings and left.  It was humiliating and embarrassing but I held my head up and bore it as best I could. It was an emotional blow but I had my family to worry about and I was the only pillar holding that up.  If I crashed everything around me would.  I couldn’t let my son down.   He’d had a rough enough life and I didn’t want to complicate it any more with this.

At the time, I didn’t know what sort of protections I had as a person with a medical issue such as CKD.  I didn’t know that I was a person protected by the Americans with Disabilities Act (ADA).  I didn’t know I could have filed a complaint to the EEOC against the employer.   I just knew I had medical problems and i’d been fired for not doing my job well enough.  I had enough in savings to support my family for a while and I applied for unemployment.  Within a couple months I’d found temporary work as a contract worker but it meant moving to another city and renting an apartment there.  There was enough money in the contract that I could afford the two homes but it was tough on me as my condition continued to deteriorate.  Again, the toxins in my blood that were not being removed by my failing kidneys causing confusion and mental impairment.  As hard as I tried I couldn’t seem to concentrate and work without mistakes.  At the end of the six month contract, I was not renewed.

The condo I’d been renting previously was a family-owned place.  My sister was in charge of it and a month before I returned she decided to sell the place.  Without saying anything, she hired a couple guys and moved all my belongings out and put them into a garage.  In the process, the inexperienced “movers” damaged a lot of the furniture and all my son’s electronic games and the Xbox “disappeared”.  There was little I could do.  I was rapidly falling into CKD stage 4.  I had even less energy than ever and I certainly had nothing to give to fight my sister.  When I asked her about buying the condo, she said, it’s too late, it’s under contract.  So I just moved into another place and got all my belongings back.

I found a new job almost immediately.  My resume’, work experience  and technical knowledge is very impressive.  This time I found an understanding and compassionate manager.  He noted right away that I had some significant medical issues and even diagnosed my sleep apnea since he had it too.  I got treatment for that and about a year later was told I needed to start dialysis.  Again, he was considerate and suggested that I should be supplied with a laptop so I might work from the dialysis center if I felt up to it.  But even then there were moments when he didn’t think about my medical issues as a disability such as when he asked me to put my dialysis schedule on the department calendar so everyone would know when I would be available.  I know his intentions were good but I explained to him that I was uncomfortable with that because it drew attention to my medical problems.  He immediately withdrew his request.

About a year after I started dialysis, my boss was diagnosed with Stage 4 Melanoma cancer that had spread to his chest, spine and brain.  The doctor said he had three to six weeks to live.  It was another moment that rocked my life and especially his family.  He fought the good life but was gone in six months.

The person that took over as supervisor was not as considerate of my medical issues.  You see, dealing with kidney failure is not just resolved with dialysis, there are many other body functions and organs effected by it.  I had constant problems with my digestive tract and insomnia.  I was often absent from work as I spent the day trying to catch up from a sleepless night or on the toilet with diarrhea. It took almost two years before I finally got those problems resolved with medications and lifestyle changes.  I even gave back a week of my vacation because I felt I owed it to the company for taking so much sick time.  But the damage had been done with my new supervisor.  He and the CFO above him didn’t appreciate that I was doing 110 percent.  Yes, I had to leave an hour early three days a week for dialysis, but I came in to work an hour before everyone else. I was the on-call person for after hours problems with the computer system so I often spent extra hours fixing problems so that the plant operations were undisturbed.   In spite of this, I was told to start filling out a daily time sheet detailing my work product.  I sent an email to HR complaining about this new requirement for much the same reasons as I had before with my old boss.  There was no retraction.  They were tracking my hours and productivity.  I knew my days were numbered.

In spite of all my extra efforts, and just short of five years with the company when I would get another week of much needed vacation, I was “laid off” along with a five other people.  In a company with 250 employees, six people hardly constitutes a “lay off”.  The management was simply taking advantage of an annual event to get rid of us with medical problems.  Not coincidentally, three of the six were people like me that had medical issues and the other three were second shift workers that were usually laid off at that time of year.

I was determined that this time I was not going to take this so-called “lay off” without a good fight.   I got to work and researched the remedies that would be available to me.  I inquired about attorneys and found that while there are lots of employment attorneys that will work for corporations, there are very few that are available for workers.  Then, if you can find one, they want a huge retainer fee and a huge percentage of the settlement.  With all the turmoil of the last few years, my savings were gone, I didn’t have anything for a retainer unless I dug into my 401k that I’d scraped and saved for my retirement.

I researched the EEOC (Economic Employment Opportunities Commission)  and went through hours and hours of material associated with age and medical disability discrimination.  If this was a college course, I’d have a degree in the field by now.

In the next installment, I detail my struggle with the EEOC.  It’s a story unto itself and it’s on-going even now. To continue to part two, see “Dialysis and Your Job (Part 2)

© 2012 DevonTexas

*(The National Kidney Center has a great page detailing the symptoms of kidney disease.)

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About DevonTexas

I am a person with ESRD (End Stage Renal Disease) which means my kidneys don't work. Forty or so years ago that would have been a death sentence but today there is Dialysis which means I can be hooked up to a machine that will clean my blood as the kidneys should. Three days a week, I go to a center and have too very large needles stuck in my arm to remove and replace my blood as it passes through a process where it's cleaned and the fluid is removed, a process taking a little over four hours each time. I want to advance knowledge about dialysis so that other patients can learn from my experience and mistakes. We shouldn't have to reinvent the wheel, eh? There is so much to be learned and experienced about our predicament. There are vast resources available to support us and enrich our lives but many patients don't know about them. There are also many issues that we have to deal with whether we want to or not. So I blog about them. All comments are confidential until I approve them. If you don't want your comment public, let me know and I will respect that. So, feel free to leave a comment. Enjoy.
This entry was posted in ADA, dialysis, disability, ESRD, parenting, personal and tagged , , , , , , . Bookmark the permalink.

2 Responses to CKD and Your Job (Part One)

  1. Marcia says:

    Hey Devon! I read your blog re: CKD and your Job, Part One, and when I clicked on the link provided for Part Two, I received an error indicating that the link no longer existed! Do you have Part Two online? Thanks. Marcia

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