Living Kidney Donors Network is a non-profit organization offering help to those in need of a kidney transplant in their pursuit of living donation. LKDN also helps those who are interested in being a living kidney donor.

November 2014
Living Kidney Donors Network

In This Issue:

  • Would you rather be referred to as a "Customer" instead of a "Patient"?
  • Information on the LKDN webinar
  • Help for your Kidney Kampaign
  • Recent Articles of Interest
  • Did you or your donor receive financial support for your transplant i.e. for travel and lodging expenses?

Why Are We Referred to as Patients? 

In Greek and Latin, the word "patient" refers to someone who is suffering.

Paul Rieckhoff, veteran of the U.S Army and the Iraq War is the Founder and Executive Director of Iraq & Afghanistan Veterans of America. Speaking on the topic of veteran's care, or lack of it being provided by the VA he said, "the first thing the VA has to do is stop calling the veterans patients and start calling them customers."

In Hospice and Palliative Care, the "patients" are called "residents" if they live at the centre/hospital all the time.They are called "clients" when they come and go from these services. I think everyone will agree that these individuals are treated differently than most "patients." Yes, their current state of health is very different, but why are we addressed this way only at the end of our lives?

Many years ago I asked my doctors and their staff to refer to me as a  "customer" or a "client" instead of using the term "patient." My doctors and medical care staff did not comply. 

I'd welcome hearing your thoughts on this, please email me by clicking here or at:

The Recent LKDN Webinars

The November 3rd and 4th webinars were very successful. If you missed these there's a recording of the November 4th webinar. Click here to watch it. This link includes a copy of the Power Point presentation that was used and all of the articles and documents that were referenced. It's an excellent resource of information for you, your advocates and anyone considering be a kidney donor.
Help for your Kidney Kampaign

New rules to the kidney transplant waiting list will allow you to gain more wait time if you started dialysis before you were placed on the waiting list.

Form 2728 was filled out for you when you started dialysis. That form will be used to enter your new start date for the waiting list. This rule takes effect December 4th. You should speak to your dialysis social worker to make sure your waiting list start date is corrected if you were on dialysis before you were put on the waiting list.

Have you printed cards that tell your story? If not, here's an easy way to get them printed:
  1. Go to:
  2. Sign in with this login name: and password: Kidney
  3. Mouse over: My Account (Top right side,) and click "My Portfolio" to see a few examples. 
  4. If you like one of the cards, click "Save a Copy" and give it a new name. From there you could make changes
  5. To start fresh, click "Business Card" up top and make your own.
  6. When you are finished designing and order a card don't allow them to store your payment info or go back to "My Account" select "Stored Payments" and remove your info.
You could use the cards to put at the bottom of a flyer explaining your need for a kidney transplant. Click here to see examples of flyers and business cards. If you send me a copy of your card and/or your flyer, I will put it on our website so others can use it as an example. To see other examples of flyers and business cards click here. Send us yours by clicking here and we will included it for others to see. 

Do you follow us on Facebook? If you like a posting click on the "Share" button and those who follow you will be able to read that information. 

Are you receiving the Tuesdays with... updates? Here's how they work. You'll receive an email every Monday with a suggestion of what you could include in your email to family and friend regarding your Kidney Kampaign. Click here to learn more about Tuesdays with... updates.

Getting an article written about you may not be as difficult as you might think. First, write out your story. Then send it to the editor of a local newspaper, school, religious organization etc. These links will take you to websites that list the names of newspapers in your area.
Has a story been written about you? If yes, please click here and we will post it on our Facebook page and make it available on our website.

You should have your own website. It will allow you to provide more info about your need and the transplant process. Here's a new service that might work for you. Click here to build your website.

Recent Articles of Interest

As we've written about in the past, there are different regions that have shorter waiting lists. But how do I get there quickly? OrganJet can help. To read more about OrganJet click here. To compare wait times at different transplant  hospitals click here. To get the info about wait times, first search by State in the top left side of the page and then by center, select the “New Format" under the "View Report" column, the information you are looking for will be on page #11. There’s additional information about each hospital in the report

Transplant nephrologists and surgeons from 12 different countries revealed strong support for full reimbursement of out-of-pocket expenses such as medical bills, accommodation, transportation and childcare costs associated with organ donation. Click here to be taken to the American Living Organ Donor Fund, an organization that wants to support donors financially.  This is a new non-profit organization that is looking to help those who would like to be a living kidney donor if they can receive financial support for the expenses they incur. I’m very proud to have been asked to be a member of the Board of Directors of this organization. Here are two articles about this subject.

Your home blood pressure monitor may not be accurate. You might want to ask if you could get your BP checked when you get your blood drawn. And take your monitor the next time you have a Dr. appt so you could compare the readings.

We Need Your Help to Help Others

When you or your recipient received a transplant did the insurance company provide any financial support for travel, lodging or time off from work? Did the hospital have free housing for you in a local hotel or other facility? We need this information to help others.

As I mentioned above, I'm on the Board of Directors of American Living Organ Donor Fund, an organization whose Mission is to save lives by making it easier for donors to donate by providing them with financial support. We are gathering this information on insurance companies and transplant hospitals. For some donors, having this support allows them to be able to donate. Click here if you would like to visit their website.

Please let us know what support your received by clicking here. If you have information that could be helpful, include the name and address of the insurance company and or the hospital.
Please Share this Newsletter

Do you know someone who could benefit from reading this newsletter? It could be someone  you see at the dialysis clinic,  a transplant or dialysis social worker, nurse or doctor. Please forward it to them. You will find a "Forward to a Friend" link at the top and bottom of this email.

To view previous newsletters Click Here

Harvey Mysel

I’m a two time kidney transplant recipient and founder of the non-profit organization Living Kidney Donors Network. I started LKDN after my first kidney transplant in 2007; my wife Amy was my donor. I’d known about my kidney ailment, PKD a genetic condition, for 20 years. One and a half years after my transplant, I contracted a virus that attacks the kidney. I  was told in January 2012  I needed another transplant. I was very fortunate to receive a kidney from Stephen Liegghio in August 2012. To learn more about Harvey Mysel: Click Here
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