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 in. 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.