Thank you to all the donors who made my scholarship possible. I am so grateful you saw my potential and for giving me this chance. I appreciate all the work you do in asking for donations, so someone like me can make something of themselves in spite of kidney failure. I appreciate all the back and forth that went on to pay for my tuition and some for housing. I appreciate the patience you had for this process. It is always a fear of mine; not having had enough money (because of medical expenses) to spare for school and technical training. My medical bills are unreal, which as a young person, is hard. It really lifted a weight off my shoulders having one less expense (tuition/housing). It might not have even been possible without the scholarship. I have been stressed out starting school soon, but I am so grateful to you. Your support will help me enjoy my classes just a little bit more! Thanks again for all you do, and to all the people who donate their car to Kidney Kars who make it possible! I can now continue to work to pay for bills AND receive higher education/training so one day I can work a legit job. Sending my best to all of you, for your kindness to me!
I read an one of the most exciting things I’ve read in a long time on NBC news about kidney (and organ) transplantation! It’s about a new technique — called a dual immune/solid organ transplant that was performed on two children who received kidney transplants at Stanford Medical Center. It involves a stem cell transplant that trains the immune system not to reject a donated kidney (or organ). The protocol (used recently at Stanford) isn’t new, but its success is. This technique could replace life long suppression of the immune system by taking immunosuppressive drugs and steroids so the body’s immune system won’t reject a donated kidney. In essence, the donated kidney could last indefinitely inside of a recipient; or at least much longer–and without pharmaceutical immunosuppressant. It could reduce the number of times each transplant recipient might need a kidney (due to rejection). In each case, a parent donated stem cells taken from bone marrow, as well as a kidney. The end goal of transplantation is achieve “immune tolerance,” meaning that the body doesn’t view a donated organ as foreign a threat to the body. We are moving much closer to this reality. This is amazing news for the over 90,000 Americans currently awaiting a life saving organ (80% of which need a kidney). The advances in kidney / organ transplantation in the last 30 years is truly amazing science.
The bassist for the The Kinks was on kidney dialysis for 11 years?
I’ve worked for the National Kidney Foundation of Utah & Idaho for a long time. So today I was clearing our shelves of dusty, outdated kidney patient support and services pamphlets (that are all now available online) when I ran into this little ditty.
How did I miss this?
I had worked for the Kidney Foundation of Utah for 7 years when Peter Quaife started dialysis treatments. I’d worked here for 12 the year he ultimately passed away from kidney failure. I’m kind of devastated. I thought I knew all the famous people who were on dialysis or who’d had a kidney transplant (Gary Coleman, George Lopez, Selina Gomez, Nick Cannon, Tracy Morgan, Sarah Hyland). But somehow I’d missed Peter Quaife, The Kink’s bassist. I can sing at least 7 of their top 10 songs by heart like every other kid who lived through the 1970’s. I looked over all his sketches, and read each joke thinking about the artist, a former rock star, sitting on dialysis letting the difficulty of that, fuel his wicked humor. The English are so much better at the ‘stiff upper lip’ and ‘self effacing’ humor than Americans to begin with. But I found myself really admiring the spirit of rebellious observation in which he drew cartoons and jokes about some really awful realities of dialysis. Dark humor is always the best humor in my book. I think that’s what makes it so delicious. I’m on the hunt now for Volume 2, which I guess I’ll have to find on abebooks.com if all else fails. But I am sad that I missed this chapter. I am a little younger than Mr. Quaife was when he went on dialysis. No one wants to go on dialysis, or have their kidneys fail. There are a lot of depressed people on dialysis trying to make the most out of life, and mourning the life they had ‘before’ dialysis. I don’t know about you, but being a freaking rock star, like LEGIT British Invasion rock star, would be a hard thing to mourn the loss of. I’m certain he’d settle way down by the time his kidneys were failing. But wow. He’d been bigger than life, toured the world –one of the hippest cats out of England. And kidney failure still found him.
Famous People Do Their Best
We hardly even heard about George Lopez and Selena Gomez having kidney failure. They didn’t seem to miss a beat between kidney failure and kidney transplant. Unless you follow them on Instagram or something, who knew? Other kidney patients, that’s who. But no famous person on dialysis, to my knowledge, ever sat down to write a book (and really marinate) about how much dialysis sucks. And then also make it funny. So today, 12 years too late I’m honoring the memory of Peter Quaife “He Really Got me Now.” So I’m sharing my personal favorite sketches from The Lighter Side of Dialysis, Volume 1. I’ll keep you updated when I find Volume 2.
As Honorary Chairman of the Board of the National Kidney Foundation of Utah and Idaho, we honored Senator Hatch with the Gift of Life Award in 1988. He helped craft legislation that made kidney transplant and immunosuppressive drugs accepted therapies covered by private insurance and Medicare at a time people could either afford to pay out of pocket or could not receive these miracles of medical advancement. Here is an excerpt from the Program that is particularly relevant to all those who suffer kidney disease: “A night to honor Senator Orrin G. Hatch for his leadership in the US Senate establishing the Organ Procurement and Transplantation Act of 1983, his efforts in furthering funding for ongoing accessibility of immunosuppressive drugs, his strong commitment to biomedical research, his leadership in initiating and supporting health care legislation, continuing advocacy of home health care services. We salute you Senator Hatch for your compassion and dedication to better health care for all Americans.”
As Ronald Regan said of Senator Hatch on the occasion of his award: “Orrin is one of the most responsible, hard-working members of the US Senate. He lives right, he thinks right, and he cares deeply about the people who sent him to Washington. He is a representative the people of Utah can be proud of.”
This photo was sent to us yesterday by one of our NKFU&I staff members during a private tour of the United States Capitol Building. We are grateful to remember one of our first NKF of Utah champions because of what he did first and foremost, to promote and support organ donation and kidney transplantation as biomedical pioneer champion.
The National Kidney Foundation of Utah has chosen our local Utah “Dialysis Christmas Family.”
The National Kidney Foundation of Utah & Idaho established one of the country’s first ‘cars for charity’ operations in the country, and remains Utah’s #1 most trusted choice.
You know those small turn of the century businesses who built customer loyalty, offered incredible customer service, and met specific community needs with their business model? For example, it’s like those mercantile businesses in southern towns. For a century or more that store was the one place everyone for miles around shopped for their groceries, clothing/cloth, housewares and tools. Then along with the connection of the railroad, and the development of the mail system came the Sears Catalogue. The People could now shop by mail order. It was a revolution that put many, many small town mercantile out of business — or those who adapted and rolled with the punches, improved their inventory to micro perform by not having to warehouse or manage certain inventory that could be received by mail ordered. They’d keep their inventory local, fresh okra? Yes. Bottled butter beans, obviously. Cheerwine, without a doubt. They honed the art of MICRO performance suited to just their own community needs. Those small mercantile groups, who had their finger on the pulse of their own community for 50 0r more years then were challenged again with the onset of franchise operations. By 1926 the first Sears store were starting to be built everywhere. Now the local mercantile shop had real competition. But then what happened around 80 year later would close up every mom-and-pop small business across America: Internet commerce. After more than 100 years, Sears pulled up stakes everywhere because they resisted internet buying. Sears counted on that brand loyalty for over 100 years, and they lost the bet along with K-Mart, and others.
Charity car donation is a lot like that, we’ve had to change and adapt. We were one of the first 5 cars-for-charity operations. We built our model after a group in Texas who came up with this genius idea of turning ‘One man’s junk into another man’s tax deduction.’ As a girl who was a mechanic assistant (to her dad) since the age of 6, Kidney Cars donation was a job tailored to a specific skill set which felt, I alone possessed. I spent years combing swap-meets and wrecking yards with my dad for parts, I spent many hours over open pans of gasoline with a wire brush cleaning up gunky car parts (in case you wonder what’s wrong with me), and using my tiny child fingers to reach into the tight places of a motor with a wrench to get to the spark plugs. We never had less than 8 vehicles sitting around the property (some were ours, most were my dad’s customers). But I grew up loathing the junk yard that was my East County San Diego home. When I went to college, I was hired as a research assistant at the Brigham Young University Library working on critically important Jewish-American literature projects which required yearly grant renewals. I became pretty good at reporting with great care, the work that was being done, and helping the Humanities Department to obtain the grants necessary to finish the work. It was deeply satisfying work, and I immersed myself in the materials celebrating the country’s most well known authors and screenwriters in American history. I am so grateful, I am at a loss for words to describe what those years of experience did for me, or to say how those books and ideas influenced me for good. After college, a friend who knew I wrote grants told me I should work for his mom ‘for the summer.’ She was starting a car donation program. Imagine my shocking realization at the convergence between my past life as a mechanic assistant and present life as a grant writer/ fundraiser. Can you imagine? But there it was, a job tailor made for me. I had illusions of grandeur of clearing out every house in the country that looked like mine growing up; littered with derelict Volkswagens and Ford trucks. The heavens presented me a way to clean up every community of junk cars leaking their oil and antifreeze into the bare dirt where they’d been parked for 3 years. This is where Kidney Cars was born. The key was the free towing and the tax deduction. Keep in mind, that up until around 1990 it would cost you $30-80 to hire a wrecking yard to come get your old car. The world changed because of charity car donation. We created a program where the charity would pick up your car for FREE, and then hand you a tax deduction (often times better and easier than trying to sell the broken down car yourself). I was armed with the goods to make this happen and Utah picked up what I was laying down. No state in America is as generous as Utahns when it comes to charitably taking care of their own. We have received a letter from every Utah governor since 1990 thanking us for helping Utahns in a way government never could. We have partnered with other charities to get the jobs done: hospital systems, social workers, groups that promote organ donation and who scour centralized medical records to find those at highest risk of kidney disease through AI. Kidney Cars has provided an incredibly long and smooth ride, but we’ve easily racked up 350,000 metaphorical miles on that engine. It’s time for an overhaul.
Times change. After 30 years of experiencing the delirious generosity Utah Kidney Cars donors and building a brand Utahans could trust, came the competitor interlopers: Out of state 3rd party operators and out-of-state charity advertisements. They advertise for car donations in Utah from New York, New Jersey and California but the money doesn’t stay in Utah. Sadly the funding is not disseminated TO UTAHNS. There have even been outright fraud operators, saying they were “charities,” but were handing out vacation hotel stays instead of tax receipts. Who knows where the money goes? There were BIG businesses interloping charity donations through the pay-per-car managing of car donations. Yes, it’s just like the mom-and-pop stores being driven out of business around 1910 by bigger operators. Unfortunately, we built such an internet friendly model for car donation, but too few people do enough online research to understand that out of state operators (where charity is concerned) literally rob the neediest Utahans of charity funding: housing, medical car, kidney transplant costs, transportation to and from dialysis. That’s how we started the Utahns helping Utahns campaign. The idea is, sometimes bigger isn’t better. Bigger sometimes mean sharing the charity dollars with businesses not patients. Many smaller charities have turned to these 3rd party businesses to run their car donating programs. While it allows the charity to focus on their charitable mission, they lose up to 40% of the money earned on every car donation. By using the local web address www.towKars.org to make a Kidney Kars donation, 100% stays in Utah and Idaho to help locals. While some of our partners must rely on 3rd part car companies to manage their donations, we still do it the old fashioned way by answering our own phone. That way, we’re not paying someone else to do it. That way, we give the most amount of money possible, directly to the kidney patients in Utah and Idaho who need it the most.
Unlike what happened to small businesses because of the advent of internet shopping, car donation is actually better at mico-performing for locals. Higher accountability, and providing funding to the medically needy in Utah and Idaho communities. Where charity car donation is concerned, bigger is not better. Bigger means, less money goes to the charity, and more money goes to the businesses that run the charity program. Kidney Kas has resisted this change by remaining hyper-local in order to provide maximum charity funding, without needing to a 3rd party doing the work. We do our own work. So research before donating a car–sometimes a slicker website, and 24 hour phone operators are convenient, but they rob the charitable work of the money intended to fund the mission. Please keep this in mind when considering who to donate your car to. When you call our (801) 226-5111 number or visit www.towKars.org your call/donation lands in Provo. So if your call doesn’t land in Provo, it’s a NO GO. See what I did there? We’re in our Provo, Utah office 9-5/ M-F (801) 226-5111. Free 48 hour towing and the HIGHEST tax deduction that also keeps the donation funds local, to help Utah and Idaho Kidney patients who need it most.
Remember the roaring 20’s New Years Eve parties we had December 31, 2019?
The flailing carefree fun we had dressing in pin stripe Zoot Suites and flapper dresses? Today is 11/11/2021 and New Years Eve of 2019 feels like a million-emotional years ago. Shortly into January of 2020 we began learning about Covid-19. It was a blip at first, like the H1N1 virus from 2009. It was a small byline. But then it began: the cruise ships, the travelers, the doctors all giving reports of the rapid spread. We understood little, maybe we felt Covid was hyped by the CDC epidemiologists, anxious to shine in their moment of expertise. By March 14th we were asked as a country to quarantine, schools went online, work turned into Zoom meetings and 5,000 emails a day, hospitals braced themselves. It suddenly became an ideological battlefield of freedom, and a matter of sustaining the economy. The food and toilet paper went missing from grocery store shelves as we locked down. We shopped feeling self-conscious about the masks we wore looking for friendly eyes (or defiantly facing other shoppers bare faced to prove a point). We needed anti viral cleaning solutions, hand sanitizer, PPE. Healthy people took it in stride. But those with suppressed immune systems, lung disease and the elderly –and those who take care of them–were listening very carefully. Rest homes were ground zero. Family’s pulled their loved ones out full time care units. The world, the economy, and our personal lives affected by the change. But we were in it together, like 9/11 or were we? Turns out we weren’t in it together.
The National Kidney Foundation of Utah & Idaho represents a community of immune suppressed individuals.
All kidney patients are immune suppressed either because their kidneys don’t filter poisons/toxins which made them sick or because they’ve had a transplant and used immunosuppressive drugs to protect their body from rejecting the transplant. On the forefront of our mission was the protection of the most venerable kidney patients. Kidney patients who had already had to quit their jobs, not because of sickness per se, but because they didn’t have insurance or good-enough insurance, or money to pay for dialysis or qualify for the transplant waiting list. Kidney patients are often placed in a no-win situation of accepting Medicare to help pay for dialysis treatments. The National Kidney Foundation of Utah & Idaho struggled against Utah and Idaho’s popular notions of patriotism and individualism, and anti vaccination sentiments in order to provide certified, correct, medical information about how to avoid contacting Covid-19. Our social media was littered with “sheeple” comments we had to erase. We stood fast in protecting Kidney Patient’s right to fight for their health in order to qualify for a kidney transplant. We did not need bullyies disparaging their efforts to remain Covid free. During the socio-idological battle, not only were kidney patients losing transplanted kidneys to Covid, but seemingly healthy people were losing their kidneys BECAUSE of Covid. It is estimated that 1 in 5 people in ICU (due to Covid) would emerge “recovered” from Covid, but needing dialysis treatments due to the kidney damage it caused.
What the NKF of Utah & Idaho desires above all is to protect the right for people (already struggling with kidney failure) to feel our love and admiration for their battle.
Anyone who has ever been on the transplant waiting list, who has received a kidney transplant, can tell you, that doing so is to earn an unofficial Master Degree of Public Administration. We were fighting a vociferous, antagonistic community who incited “Natural Selection” as the way to handle Covid: anti establishment, anti medical doctors, anti vaccinators. That’s an amazingly murderous and chilling sentiment. The last thing the NKF of Utah & Idaho wanted was an ideological battle pointing out the selfishness of the truly fortunate (healthy) people (who have never needed to ponder their health or their own mortality) dictating rules of this battle. Often those born will chronic illness like CF, MD, diabetes or Asthma did nothing to deserve being sick, besides be born with a genetic propensity for illness. Masks were supposed to be used as a “love thy neighbor” effort. It indicated willingness to “keeping our own germs/saliva droplets to ourselves.” Instead, what we saw was defiant non mask wearing people flaunting their fortune of good health, willing to spew their literal spit droplets into everyone’s faces with 100% certainty that they had every AMERICAN FREEDOM to do so. We understand death is part of life, and sickness is a reality for everyone with a body. But do people have the right to spread disease, essentially killing off the sick and infirm? It was a very discouraging time to be an immune compromised person. Many quietly let go. It has been discouraging to be a brave soul willing to fight for life, even with kidney disease. The NKF of Utah & Idaho waged, with all our courage, a war of correct information regarding Covid and withstood vitriolic damnation of many ‘patriots.’ While we were trying to ‘suffer with those who suffer’, and live with a certain humility to serve ‘the least of these’, the Patriots didn’t want to wear face masks. Then, after the vaccine was developed even the President who quietly got and recovered from Covid (with the help of the country’s best doctors and available treatments), got vaccinated. Around then, the patriots decided the mask was ok in public–but the vaccine was not. The misinformation had gone so far, they Boo-ed their president when he suggested everyone should be vaccinated. Then finally, as we enter the last stages of pandemic, every battle fatigued Utah and Idahoan simply let nature take it’s course to the stage in which today, The Deseret News declared as “BONKERS numbers of Covid Cases and Covid deaths.” Bonkers… Very well put Lisa Riley Roche.
A few Utah and Idaho kidney patients, we know personally, wanting to maintain their anti-establishment ideology of anti vaccination, ultimately lost their lives or their transplanted kidney after contacting Covid.
The irony of this situation is that — it was science gave them that miracle of a kidney transplant to begin with. But mistrust and misinformation that has been sown since March of 2020 caused people, even kidney patient to trust alternative news and doctors advice. I wish those who avidly support the anti-medical establishment, and pass along Covid misinformation at their daily patriot-parade, can stop for one second, to really take in the damage to the families left behind when a loved one dies. I wish the could see how they have unintentionally pledged trillions of dollars to the medical establishment to care for the collapsed lungs and Covid-stroke damage done to those “lucky enough” to survive the ICU. The utter tragedy of losing a transplanted kidney to misinformation may border on criminal. But who is to blame? The mainstream media? The President? Doctors? The Government? When it comes to protecting your health and your life–what does it matter, who is to blame? When it it gone, it’s gone. When you are dead or sick, you can not roll back time. Death and sickness is a human fact that can not be altered. So do you want to care for your fellow man? Or nah.
Working in public health, protecting the sick who are fighting for their lives– as pandemic rages– became unpopular in Utah and Idaho.While everyone celebrates and supports organ donation, protecting oneself from Covid (in honor of the family who donated a kidney) became, by some alternate universe reality, almost an act of treason against American Freedom.
Are we so enraptured with being ‘right’ that we will unintentionally kill the elderly of our churches over our principles?
Is Covid worth dying for if it can be so easily prevented? Are hygiene and face masks such a high price to pay for freedom from illness? Do you know if your blood has a propensity to clot? Well getting Covid is not when I’d like to find that out. But that’s me. So in light of all that has transpired since March of 2020, and in light of the BONKERS numbers of Covid in Utah and Idaho I would like to offer my humble opinion:
- Continue to wear masks in public spaces and around the vulnerable sick/elderly, or just everyone because you don’t know who is sick
- Get vaccinated, and reduce your risk of ‘bad covid’
- If you are immune-compromised ask your doctor if getting the vaccine booster is right for you
- Wash your hands after you visit the grocery store or church
- Don’t go to work/church/school/a Jazz game if you are sick
- Eat your vitamins
- Don’t smoke
We get one life. Join us in choosing to live it the best we can– in health and safety.
Live in spite of the voices in this community bullying us into ‘doing less’ to protect ourselves. It gives us no pleasure to learn of vociferously unvaccinated freedom loving friends and family members stricken with Covid. At the time of this writing, there are 4 oxygen canisters being passed around my own extended family members because they believe the government is at the helm of some kind of evil conspiracy to force them into vaccination. They are paying for that belief with their lungs and the remaining years of their lives.
Amelia M. got her kidney, just in time to celebrate #DonateLifeMonth! Amelia is friend of the National Kidney Foundation of Utah & Idaho that we met at our last Family Kidney Kamp September of 2019. She has been patiently and bravely awaiting a new kidney for over a year, and has kept an incredible record of her journey (blog link below). We are so very happy for Amelia and her family! We can’t wait to see her at Youth Transplant Kamp when she’s all better (and hopefully as Covid-19 dissipates into the final phase). What a way to honor Donate Life Month! Thank you to the generous donors who give the Gift of Life to those whose lives are spent awaiting a second chance. Amazing story for April of 2021!
Read more about her incredible journey at :
3707 N Canyon Rd #1D
Provo, UT 84604