#Dialysis and Kidney Talk


RSN LogoThe Renal Support Network has a great resource called, “Kidney Talk”.  From their website…

KidneyTalk is an online bi-weekly, half-hour radio talk show featuring RSN Founder & President Lori Hartwell. All shows (over 200 of them!) are available 24hrs a day and can be downloaded for free any time from the iTunes store.
Complete KidneyTalk Interview Index

I encourage you to go there if you’re in search of news and information about kidney disease.

Posted in CKD, dialysis, ESRD, kidney donation, patient care, polycystic Kidney Disease, Transplant | Tagged , , , , , , , , , , | Leave a comment

Dialysis and Recipes


(Updated: 12/11/14)

This is the “cooking season” and a question I often get from kidney patients is, “What can I eat?”.  We’re often told what we can’t eat but rarely what we can.  Here’s a link to the Davita Recipes which are renal (kidney) friendly. Enjoy…

Also, here’s a great site for Renal Friendly and Diabetic recipes: Re-Dial Diet. 

Re-Dial Diet also has some great ideas for this period between the holidays.  See September Re-Dial.

Posted in diabetes, dialysis, diet, ESRD, fluid control, kidney, New Patient, recipes | Tagged , , , , , , , | Leave a comment

Dialysis and IVoted

Voting is one of the most important events in your life whether you are interested and involved in politics or not.  It’s your duty as a citizen.  Here is some help about where to vote and when, if you are already registered.  Please get out and vote.  Your voice must be heard.

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NKF Responds to Medicare’s Proposed Changes to Payment and Quality Programs for Dialysis Facilities


Excellent letter from NKF about the CMS rating system

Originally posted on Advocacy in Action:

Back in July we shared the Centers for Medicare & Medicaid’s (CMS) proposed changes to dialysis payment and quality incentive program.  After gathering input from kidney patients and professionals we issued formal comments to CMS, which included recommendations for revising their proposals to strengthen patients’ access to high quality care.

Our concern about the proposed changes to payment is that rural facilities that already, on average, lose money treating Medicare patients would receive payment cuts.     Dialysis providers are likely to close facilities that continue to lose money, which could cause patients to face greater transportation challenges if they have to commute further for dialysis.  NKF recommended that CMS make changes to the way it pays for dialysis to ensure facilities in rural areas are able to cover the costs of providing the care that is needed to improve the health of their patients.

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Posted in AKF, CMS, dialysis, Dialysis Center, Dialysis Patient Citizens, ESRD, lobbying, Medicare, National Kidney Foundation. NKF | Leave a comment

Dialysis, ESRD and EEOC

Update 10/19/14:  Recently the EEOC had to sue an employer for discriminating against a patient with ESRD.  It was successful.  READ about it HERE

Back a couple years ago, I had to sue my employer through the EEOC  (Equal Employment Opportunity Commission) for violating my rights under the Americans with Disabilities ACT.   Below is some of my experience doing that.

In light of the recent posts and comments here and elsewhere, I figured it was time to post about the process I went through with the EEOC and getting my case filed and accepted.

Immediately after I got home the fateful day I was terminated, I sat down and wrote out exactly what happened and my recollections of the previous several years with my employment.  I am a writer by nature so it was my instinct to do that and I would advise the same if you find yourself in the same situation.  With all the economic upheaval of the last few years, many of us are subject to termination.  While all the details are fresh in your mind, write them down.

It’s important to use the term “terminated” because that’s what happened.  Although the company wanted to call my termination a “layoff” so they could hide behind that, it wasn’t a layoff; it was a termination.  I wrote about this in a previous post, “Dialysis and Your Job”.  If you’re included in a “layoff” and you’re disabled, don’t refer to it as a layoff.  It’s a “termination” no matter what they try to call it.

In the ensuing days, I researched the EEOC website and made a list of all the information I’d need to file a claim and under what laws I could file.  I discovered that I could file under ADA, for age discrimination (ADEA), and for retaliation and denial of benefits under the ADA.  Buried deep in the website is a copy of the Intake Questionnaire. (If that link doesn’t work, I have a copy of it here.) I can’t recall how I found i but I tried to find it a couple other times and couldn’t.  Fortunately, I had a copy of the link!  This document is key to the complaint filing process.  If you don’t fill it out before you visit the EEOC, they will have you fill it out then and it’s quite a task.  So, get it and fill it out while you have time and resources to find all the information that’s requested in the form.

I then prepared a carefully documented statement of each charge and the witnesses that could substantiate the charges.  Under each charge (in bold title), I wrote a couple paragraphs describing what I believed the company did to violate the laws.  I also noted the company personnel involved in my termination and their positions along with contact information for all those I listed in the document.

One item of documentation I had from the company was a listing of all the people in he company showing their positions and age and if they were in the “layoff” or not.  The company gave me that information as part of the termination packet.  I entered all the data into a spreadsheet so I could sort the data by age and department.  I separated out those in the layoff and showed how most of them were all second-shift, seasonal employees who would have been laid off anyway during the winter.  What was left was me and three others who were also older and had medical problems.  It made my case about both age and medical discrimination.  Then, I showed just the people in my department and how I was the oldest of the group; again substantiating how I was a victim of age discrimination.

I made copies of all the documents and even scanned them into my computer so I had digital copies, too.  I printed out the complaint statement and wrote a cover letter noting all the attachments including the Intake Questionnaire.  (Curiously this fact would become a point of conversation when I was asked to visit the EEOC office.  The first thing they wanted me to do was fill in an Intake Questionnaire!)   I packaged everything in a large envelope and mailed it to the the local EEOC office.  That was February 16, 2012.

A month later, I got a letter from the local EEOC acknowledging receipt of the complaint.  A month or so after that I got another letter containing… wait for it… an Intake Questionaire!  No letter, just the questionnaire.  I wrote back letting them know I got it and informing them I’d already sent a completed questionnaire with the original complaint packet.

Several months later, I got a call from the EEOC calling me in for an appointment to discuss the complaint.  I went in on the assigned date and time and was immediately handed… a questionnaire! I had a copy of the original submittal packet with me,  pulled out a  completed questionnaire and handed it to the receptionist.  See? I told you it would be important!  Having a copy of the complaint statement would also be handy later when I met with the intake person.  It’s important that you keep and carry copies of everything.  Often in a large, complex operation like EEOC, the left-hand doesn’t know what the right-hand is doing.

After a short wait, I met with the Intake person and we went through all the charges: ADA, ADEA, Retaliation, denial of benefits.  I expected him to have the original documents I sent but he didn’t, so it was a good thing I had copies with me (again).

The details and documents I presented came in very handy when the intake person had to write out the complaint that the EEOC sent to the company.  He used my statement to summarize the complaint document and it saved him a great deal of work and sped up the process. Usually the intake worker would have to do this from notes taken during the interview.  By providing the write up, I made sure each point was covered and all the information was there. He summarized my two pages into one paragraph but he covered all the points.

After hearing everything and, especially, seeing the spreadsheets he agreed that I had a good case and it should go to mediation.  He was especially attentive to the fact that I was denied a benefit.  Rather than termination, the company should have let me go out on disability and be covered by that insurance which would have given me a comfortable income.  But, they made their choice and now they will have to face the EEOC.

EEOC Cases by Type

What’s important is that I didn’t leave anything to chance.  I prepared my documents, statements and spreadsheets.  I didn’t leave it up to the EEOC to make the case for me.  I made it for myself.  They see hundreds of cases each year and you have to clear this first hurdle.  In spite of the fact that you “feel” you been discriminated against, you need to substantiate it.  Be your own advocate.

Update 1/20/13:  It’s been a couple months since I’d heard anything about my case so I sent a letter to the last person I talked with at the EEOC.  When we last met, he said to expect something in November.  This is now January and I hadn’t heard anything.  He responded the day he got the letter and  gave me the phone number of the person who would conduct the mediation.  He said he was working on scheduling the date for the mediation.  That’s good news.  If I don’t hear from him in 30 days, I’ll write again.  You have to be a squeaky wheel… but not too squeaky! In the meantime, I will prepare for the mediation. It’s very important to be prepared for this so you get all your points across.  I will post more about this later.   To read about what happened later, READ THIS. 

DevonTexas © 2012

Posted in ADA, ADEA, CKD, disability, discrimination, EEOC, ESRD | Tagged , , , , , , , | 2 Comments

ESRD Network 14 Annual Meeting



Updated 10/7/14: This year’s annual meeting is October 24-25, 2014.  If you can make it, it is one of the most informative gatherings in the area whether you are a patient, caregiver, or provider.  

From the ESRD Network 14 website:

This one and a half day educational seminar is geared towards nephrologists, nurses, patient care technicians, social workers, and dietitians, as well as patients, their family members, and caregivers. The educational collaborative is designed to assist providers and patients in adjusting to the heightened focus on patient- and family-centered care.

Here’s the best part!  Registration for patients and caregivers is free!  You pay your own travel, lodging, and food but the event fee is zero!


Here’s a Link to the Network website that details the event and where you can register.




Previously from the June 2012 meeting…

This weekend (June 28-29) I attended the ESRD Network of Texas (14)  annual meeting. I’m exhausted today but almost shaking with excitement about the many things I learned and experienced. I added at least a dozen ideas and drafts to the blog just from some of the ideas I got while there. My pad (mentioned in “WiFi and Dialysis”) is full of notes from the meetings that started Thursday night and finally concluded Saturday afternoon. I met so many interesting people and talked until I was hoarse.

The End Stage Renal Disease (ESRD) Network for Texas (www.ESRDNetwork.org) is a massive operation that attempts to coordinate all ESRD issues for the entire state representing almost forty thousand patients. It brings together professionals like doctors, nurses, nutritionists, social workers, technicians, vendors and patients so that we can collaborate and advance the education and care for all involved with ESRD, Chronic Kidney Disease (CKD) and Transplants.

Watch this space for more about what I got out of this event!   I will even be tell you about an experience I had with a dialysis chair representative that wants me to participate in the design of the next generation chair!

Posted in CKD, dialysis, ESRD | Tagged , , , | 2 Comments

Surviving a Stroke at 33 (and Blogging About It)

Originally posted on WordPress.com News:

Christine Hyung-Oak Lee suffered a stroke when she was 33, and she has written about her experience in an inspiring personal essay for BuzzFeed.

Before that, she was using a pseudonym on WordPress.com to blog about her experiences, share details about her life, and practice her writing. In 2007, shortly after New Year’s Day, Lee wrote the following in a blog post:

something in my brain burped. most of what i want to do is just out of my grasp. i feel like i know how to do them, but then when i go to do them, i just…CAN’T. day by day, i’m regaining my abilities, so i hope this is just temporary.

Lee’s commenters urged her to see a doctor, and the next day, she responded to them from a hospital bed: “I had a stroke! Will be better.”

I spoke with Lee about her experience, and…

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