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Nieltje Gedney: A Passionate Kidney Advocate Who Will be Missed

I don’t recall meeting
Nieltje 9 years ago, but once I did, she was one of those people who
seem like you’ve always known them—an instant friend to
many. It wasn’t a complete surprise when she passed away on September 21
after 3 months of severe health problems, but, oh, what a loss to the
whole kidney community and all of us who knew her! Our organizations are
partners—Home
Dialyzors United
is a membership group focused on patient
advocacy, while the Medical
Education Institute
is a resource non-profit that develops
evidence-based patient education and tools. Nieltje used our ultrafiltration
rate calculator
at every treatment and loved our My Kidney Life
Plan
treatment matcher.

Hilarious, smart, articulate, and absolutely committed to
helping her fellow dialyzors live their best lives
, Nieltje had
an amazing ability to stay on top of everything that affected home
hemo—I was never able to scoop her! She loved global travel and
great food, and we had a tradition of sharing wonderful meals at all of
the national meetings. We collaborated on many projects: CMS comments,
conference panels, a booklet
about lifestyle with dialysis
, Home Dialysis Central e-newsletters,
a solo
home HD section
for the website, 28
KidneyViews blog posts
… Working with Home Dialyzors United (even
before she became their Executive Director), she advocated with the U.S.
Department of Transportation to make air travel easier for people with
PD or HD cyclers, and updated our travel
guide
.

NIeltje had the rare ability to break through the confusion of a
difficult diagnosis and cut to the chase of what really
mattered: how well—not necessarily how long—she could
live
. In case you missed it, here is how she described it in an
email to me:

When I learned my kidneys were damaged, I took every precaution
I knew of to extend and protect their life. Simple things most
nephrologists won’t tell you about, such as reducing protein intake, and
taking sodium bicarbonate worked wonders

Ten years later, when my kidneys had deteriorated further, I was
told to get a transplant or start dialysis or I would not see another
year. I chose to pack up and move to Ecuador for 6
months!

Seven years passed, and
I took advantage of every opportunity to travel, spend time with
the grandkids, and live each day to the fullest
. The last year
was a bit rough. I was now taking care of my 90-year old mom, who was in
her happy place with dementia. At a checkup with my doctor, he said to
my mom, who drank like a fish and smoked like a chimney all her life, to
keep up the good work—she had the labs of a 50-year old. Then, he turned
to me, and said, “the last time I saw labs this bad, the patient was in
a coma”. I knew my days were numbered.

When I crashed, during treatment for bronchial complications,
they brought in a renal consult, who, for the first time in 20
years, told me I could live a normal life on dialysis
, in fact,
she said her sister had for the past 20 years and travelled the world
doing it. I didn’t believe her, but it was worth a shot—my only shot. In
the hospital, I had my first fistula surgery, a temporary chest catheter
placed, and my first treatment. It was all a blur. Essentially,
I started the entire process of dialysis with my eyes closed, in part
due to what I now call Kidney Brain
. As kidneys gradually fail,
you don’t realize how slowly your life slips into a fog.

Upon discharge, I reported to my local dialysis clinic, and
started treatments, 3-4 hours a day, 3 days a week. The clinic knew I
wanted to do home dialysis, and as soon as my fistula was ready, I
started training. I won’t lie. It was intense, tiring, and overwhelming
at best, completely terrifying at its worst. But my strong need
for independence was even more compelling
.

Never did I ever expect to feel better on dialysis, but
after the first month, I looked and felt 10 years
younger
. When I returned to my consulting nephrologist after 3
months, she didn’t recognize me.

I have talked to many other dialyzers, who all say the same
thing. At the end, just before starting dialysis, kidney brain takes
over. So, unlike me, I would tell anyone facing kidney disease
to learn about your options very early on, before the complacency of
kidney brain sets i
n. That’s not the time to try to understand
the various treatments, because you won’t be able to absorb or remember
it anyway. If you have someone who can go with you as your advocate, I
would recommend doing so, as the information is often too overwhelming
to comprehend, while in late-stage kidney failure. I didn’t.”

A few other email gems from Nieltje:

  • Self care is critical to patient success. An engaged
    patient is a healthy patient
    . Encourage your patient to become
    an active member of the health care team. Solicit their feedback. Ask
    them how they FEEL! Labs and numbers are meant to guide you, but
    relating them to how you feel is critical. Some people can function
    great with a hemoglobin of 9, others are one step from a coma. Iron
    levels and TSATs are critical to normalizing breathing and ability to do
    daily living activities. DO NOT TREAT YOUR PATIENT like an algorithm or
    a protocol. These are guides, and should never be written in
    stone
    .”

  • Self cannulation is a must, unless there is a
    significant reason not to
    . I know of someone who is almost
    blind, and cannulates, and another who has almost no fingers, and still
    self cannulates. Dominant arm is an issue, but can be overcome. Self
    cannulation preserves the fistula and provides more stable treatments
    and needle positioning. Only you can tell when/where that needle is
    right. Even now, I may have an off stick, and it is a pain. A good stick
    and you’ll never feel a thing
    .”

  • Can a patient
    treat alone? Absolutely
    . I trained by myself—I did not want
    anyone responsible for my care but me. I understood that in the
    beginning, there was a need for someone to be nearby, in the event of an
    emergency. But as my confidence and competence grew, this was a
    non-issue. In fact for me, having someone present is a distraction, and
    actually contributed to mistakes, not alleviated them. I understand the
    risks. Carried to the ultimate conclusion, something totally off the
    wall happens, and I die at home during tx, for whatever reason.
    I am where I want to be. I do not want to be in a chair
    in center, in a hospital. So that risk for me is a no-brainer. I won’t
    care if I’m dead. You, the doc, can sign off on a patient to treat alone
    and I urge you to do so, after discussing all the ramifications with
    your patient, and when they feel confident enough to do
    so
    .”

  • Doing my treatments on my schedule allows me to lead
    a fulfilled life
    , doing what I need to do every day, and ending
    it with a relaxing treatment before bed, when needed. I do not plan my
    life around dialysis, I fit it into my life as needed. It is a
    treatment; a med to be taken, one that happens to keep me alive and
    kicking.”

  • Requiring a care partner when/where none are needed
    is discriminatory, arbitrary and capricious
    in my opinion, and
    only acts as a deterrent to a patient’s best interest, and ultimately
    best outcome. When needed, or if a couple prefers, they can determine
    individual roles as they wish, but it should be strictly voluntary.
    Also, the patient should/must be required to participate 100% in his
    treatment—to know
    how to do it—even if they decide to share the
    burden. What happens if the care partner collapses? The patient is left
    vulnerable.”

Nieltje was a member of our Home
Dialysis Central Facebook Discussion
group for years, and
reached out to help a number of folks. Here’s what some of them
said:

  • Nieltje’s insights into anemia management helped me to
    change nephrologists that eventually led me to kidney
    transplant
    after having survived a liver transplant that caused
    my kidney failure. Her overall knowledge into connecting the disease
    with patients’ needs was certainly God’s gift. She actually led
    us to living better lives
    . An Angel of Advocacy for all of us
    suffering with the disease. Her Legacy will be very powerful
    .” Full
    of Love, Tom Nord.

  • Three years ago my dialysis journey started. I went on Home
    Hemo right away – 5 days a week. Then, I happened to read Nieltje’s post
    on precision or incremental dialysis. I contacted her and she
    was a well of information
    . I used her detailed info and learned
    so much from her – inspired by her experience I went with nephrologist
    support down to doing dialysis 2 times a week. My labs were good
    including great Kt/v. That is now 3 years ago and I am still doing
    treatment 2 times a week. This may change in time but it has meant a lot
    more free time and I have Nieltje to thank for that!  Nieltje was an
    inspiration!
    ” Annika Gruenn

  • I believe Nieltje Gedney joined this group right after I
    did. I may be mistaken, but back then she was in the
    midst of battling her clinic to do solo treatments while being her
    mother’s full time caregiver. I believe she may even have been
    forcefully discharged from that clinic and left without any backup?
    Her tenacity and refusal to take no for an answer made a BIG
    impression on me then and really helped us get over the fear of
    questioning protocols and being labeled non-compliant
    . She also
    went out of her way to hook us up with some direct contacts at NxStage
    when we were having issues with Rx and machines that Frank’s clinic
    wouldn’t or just couldn’t take the time to help with. Her work with Home
    Dialyzors United was inspiring and has been responsible for helping
    remove many of the obstacles that kept whole populations of people from
    doing dialysis at home in the past. I am always very sad when I see
    members here have passed, but also have to take solace knowing that
    Nieltje went on her own terms
    .” Beth Dykman

  • “Nieltje and I connected
    across the ocean first as fellow home dialysers and then also
    professionally through HDU, working with one of my clients over here in
    the UK. I’m so sad we never met in person, but even through a screen,
    she was a force of nature. Her positive spirit, absolutely
    tireless passion for advocacy and for refusing to accept the status quo,
    thereby helping countless others, was nothing short of
    inspirational
    and while that word gets thrown around a lot, it
    truly did apply to Nieltje. She also had a wonderful smile, a twinkle in
    her eye, and we always had such a giggle when we spoke, plus shared a
    huge love of horse-riding. To say she’ll be missed is a huge
    understatement.”
    Maddy Warren

  • Nieltje was a pioneering advocate for
    patient-centeredness,
    championing advancements from home
    dialysis to precision and incremental dialysis. Her legacy will forever
    be cherished.
    ” Kamyar Kalantar-Zadeh, MD, MPH, PhD

  • “When I first joined some of the dialysis groups, then
    especially when I started home hemo and joined the home groups, one name
    soon stood out. Nieltje always had and shared great information. When I
    posted a rant about the RedSense, Nieltje offered to share my concerns
    with the company. Although I was done with them, I was impressed that
    she offered to help. It wasn’t long before I discovered she and I had
    much in common and we joked that we were dialysis twins. Seems we were
    on parallel paths. I learned so much from her. I admired her
    ability to travel with all the dialysis equipment, something I’ve only
    attempted a couple times
    . Her death has hit me hard. I’ll miss
    seeing her weighing in on so much. Her fight for proper anemia
    management and incremental dialysis were inspiring. She’ll be missed by
    so many.”
    Linda McKenney

  • “I only got to meet Nieltje once in person, but I will never
    forget her. She was a force for good, going out of her way to
    share and support home dialyzors
    .”
    Gayle Hall, BSN, RN,
    CNN

  • “I always wanted to meet Nieltje. She always seemed
    to be happy
    . Several years ago we were discussing something and
    she said, ‘I hope you don’t think I am being quirky.’ Now whenever I
    hear that word, I think of her. She will be missed.”
    Carol
    Carpenter Murphy

  • “She reached out to everyone who was in need! She was
    a voice for those who didn’t use their own voice!
    She was
    amazing!
    ” Gail Schubert DeWald, BS, RN, CNN

  • “Although I don’t have a close personal connection with
    Nieltje, I’ve always found her to be incredibly helpful and
    enthusiastic
    . The most recent example was when Nieltje, as she
    always does, generously offered her time and expertise and provided me
    with a comprehensive list of Medicare codes that proved invaluable in
    resolving my situation when I faced unrealistic travel protocols imposed
    by my center’s administration. Nieltje taught me how to advocate for
    myself with the true, real codes. Her absence will be profoundly felt.
    She will be greatly missed.”
    Frances Liu

  • One of the first times I
    had dinner with Nieltje (and everyone else), I had an involuntary arm
    spasm and literally chucked a T-rex sized BBQ rib directly across the
    table at her. She laughed hysterically. It wasn’t even
    mortifying after that, it was just SO funny. And, her laugh was
    contagious. This is a core memory for me, and makes me smile even now.
    Much love to all.”
    Jenn Ravert, RN

  • Nieltje was the best. I miss her terribly. She was
    an incredible human: honest, irreverent, warm, compassionate
    ,
    as the Finns would say she had Sisu! She persevered beyond what was that
    possible almost every day. I found this group and the Home Dialyzors
    United group quite by accident. I did a Google search and ended up on
    their website which brought me to their group and she also suggested
    this group to me several years ago. I had a lot of questions, a pile of
    research, and had my medically complex son crash into hemodialysis. I
    have never seen an advocate like her. And I was blessed to be taken
    under her wing because I had never done advocacy around anything
    kidney…she was patient with my questions, introduced me to so many of
    you. In 2022 at a conference I got to meet /speak with Dawn Edwards and
    meet Nieltje in person. I was so excited to take a picture with them, I
    forgot to take my mask off! Over the past several years, no
    matter what happened, she would brainstorm with me and I with
    her
    . She and Jamie had several similar difficult paths. When
    Jamie passed in July, she was one of the first to call me and check in,
    even though she was facing her own battles. She was happy that Jamie got
    to live and die on his own terms. As sad as I am, I have peace,
    knowing that she was able to pass on her own terms.
    So very
    grateful for the friendship and the knowledge she shared. I will miss
    our weekend coffee calls. I can only imagine her and Jamie on horseback
    on the other side! She was constantly thinking about all facets of
    everything kidney and how to make things better for patients and
    Clinician/ Patient communication. She constantly researched topics and
    helped so many find their voice. She networked people and services with
    ease. I was always in awe of all she had to deal with regarding
    her own health, yet she would still lug that equipment to the airport
    and flew somewhere to advocate, on behalf of us all
    . So many
    have said the best way to honor her legacy is to advocate in your own
    way. And I believe that wholeheartedly.”
    Lisa Burgess

  • “Nieltje Gedney was amazing and immediately offered up
    suggestions when our daughter first started on home dialysis. Also, when
    we were having issues. She also cheered when our daughter got her
    transplant. The world lost an amazing person. Like my mom said when she
    was alive, ‘May she be dancing with the angels
    now
    .
    Bruce Blythe

It’s pretty tough to improve
on “may she be dancing with the angels now,” so I will remind
folks that they still have opportunities to learn from the many
resources Nieltje left behind
, from blog posts to YouTube
videos (just search for her name). She donated her body to science, and
a memorial service will be held on Saturday, November 18, in West
Virginia, and online (TBD). Please leave YOUR memories and
thoughts about Nieltje in the comments below
if you will miss
her as much as we already do.