If you saw recent headlines about clinical trials for transplanting modified pig kidneys into humans, you may have wondered why scientists would even think about doing such a thing. The simple reason is that there aren’t nearly enough human kidneys available, living or deceased, to meet the growing need. About 800,000 people in the United States have kidney failure. About 37 million people — one in seven — in this country have chronic kidney disease, meaning that they’re slowly losing kidney function. The real tragedy is that 90% of them don’t know it.
Knowing your kidney function could save your life. Chronic kidney disease is often asymptomatic until it progresses to kidney failure. Early detection through screenings can reverse or slow progression through diet, exercise, and medication. Don’t wait until it’s too late—understanding kidney health is vital for everyone.
The Critical Importance of Knowing Your Kidney Function
Simply knowing the level of your kidney function–that is, how effectively your kidneys are working–could save your life. Chronic kidney disease is usually asymptomatic until it’s progressed to kidney failure and sometimes not even then. Often it’s discovered when someone gets a screening at a Kidney Walk event to raise awareness of kidney disease. Or someone may go to the emergency room for a possibly unrelated problem.
If the kidneys are failing, that person immediately is put on dialysis, a process that removes toxins and excess fluid if the kidneys can’t do the job. The patient will need dialysis — but, ideally, a new kidney — to stay alive.
If kidney disease is caught in the early stages, however, the condition can frequently be reversed through healthful eating, exercise and possibly medication. In any case, disease progression typically can be slowed with proper treatment. Once the disease reaches kidney failure, though, it’s too late to turn it around.
Contrary to popular notions, kidney disease can strike anyone, not only older people or those with diabetes or poor eating habits.
A Personal Encounter with Kidney Disease
My son was diagnosed with kidney disease when he was in college, and the news came out of left field for us. We did not have a family history of kidney disease, and he had none of the usual risk factors (diabetes, hypertension, obesity). His condition, discovered in lab work, was the unexpected and devastating result of a strep infection.
We were told that because he was young and otherwise healthy, the disease might never progress to kidney failure; in any case it could take many years. His condition was monitored for a few years, and then, inexplicably, his kidneys failed just months after his college graduation.
He spent 20 long months clinically depressed as he underwent in-center dialysis, until I could donate my left kidney to him. Eighteen years later, the one I gave him is still going strong. My right one still gives me normal kidney function–that is, a GFR, or glomerular filtration rate, of 60 or higher; mine is 76. At nearly age 77, I have an active, healthy life, as do most living donors.
Before my son’s initial diagnosis I knew nothing about kidneys and kidney disease. I was not alone in my lack of awareness. As an active kidney donation advocate for almost a decade since then, I’ve met dozens of fellow living donors and even more transplant recipients. Interestingly, almost all of them say that they too knew nothing about this all-important organ until the disease affected their own family.
Don’t wait till you have a personal connection to learn about your kidneys and kidney transplantation.
Quiz: How Well Are Your Kidneys Functioning?
Chances are good that you don’t know this extremely important piece of health information. If that’s the case, ask your doctor to check ASAP so you can start taking control of your health care. All that’s needed is a simple blood test.
Now test your knowledge of some basic kidney-related facts. True or false?…
1. More than 100,000 people in the United States are waiting for an organ (most of them for a kidney) from a deceased donor.
True.
The number currently waiting for a kidney is about 90,000. Not every patient is a candidate for a transplant, depending on their condition and comorbidities. About 27,000 kidney transplants — from both living and deceased donors — were performed last year. That obviously leaves a huge gap.
Most of the people with kidney failure are on dialysis.
2. For patients with kidney failure, dialysis is a simple, comfortable treatment that can replace all or most of normal kidney function.
False.
Dialysis is not a substitute for a new kidney; it provides only about 20% of normal kidney function. The process also exacts a heavy toll on the body: although many kidney patients live on dialysis indefinitely, the average survival rate after five years is less than 50%.
For most people on dialysis, the quality of life is very difficult. Patients are tethered to a machine for hours at a time at least three days a week. After each session they typically feel fatigued for hours. Depression is common.
Some people adjust better to dialysis than others, particularly if they can do home dialysis relatively comfortably. That usually entails overnight treatments that may enable them to have a normal work schedule.
3. Most people in kidney failure have to wait several weeks to get a lifesaving kidney.
False.
Most wait several years for a call that an appropriate deceased-donor kidney has become available, depending on where they live, their blood type, their condition, and other factors. It’s not uncommon to wait 10 years in some states. More than a dozen people die every day because they didn’t get one in time — or they are removed from the list because they became too sick for a transplant to be feasible.
If a person finds a living donor, however, the wait can be dramatically shortened to a matter of months, the transplant can be performed at an optimal time for both donor and recipient, and the recipient can be removed from the long national waitlist, making the wait that much shorter for everyone else on the list.
An added bonus: Live-donor kidneys typically have a better outcome and last twice as long on average as one from a deceased donor.
4. If I’m registered to be an organ donor after I die, I know that my organs will save someone’s life.
False.
Currently, about 58% of Americans are registered as organ donors even though more than 95% are said to favor organ donation. Signing up is extremely important, and we need to increase that percentage (sign up here). Even so, however, less than 1% of people die in such a way that their organs can be donated (typically in a hospital on a ventilator, once someone is brain dead, to keep the heart pumping blood).
5. We have two kidneys and we need both for good health.
False.
Most of us have two kidneys, but many people are born with just one kidney and usually live healthy productive lives. Sometimes they don’t even know they have only one. That’s why living kidney donors, like me, gradually regain normal kidney function as the remaining kidney takes on much of the work of its former mate.
6. Living donors must be a biological relative of the person to whom they want to donate their kidney.
False.
That has historically been the case (I am), but it’s less so in recent years. Increasingly, spouses, partners, friends and neighbors — even strangers — are choosing to donate. Thanks to improved antirejection medications, you don’t need to be a so-called “perfect match” at all. However, you do need to be the same blood type for starters.
Even that criterion is no longer a deal breaker when there’s an otherwise eligible healthy donor. Thanks to the practice of paired donation, an incompatible donor and recipient can “swap” with another mismatched pair to find a good match. The National Kidney Registry, for example, has a huge computer database to help potential recipients find the best possible match among potential donors.
7. You have to be young to be a living kidney donor.
False.
I was 58 when I donated, and I know people who donated in their mid-70s. What’s most important is the health of the donated kidney and the potential donor’s overall health, to ensure that donation will not jeopardize the donor’s own health and quality of life.
8. Donors need to take kidney-related medication and restrict activity for the rest of their lives. And they can’t drink alcohol.
False.
Donors should simply eat a healthy diet, stay hydrated and exercise regularly. Because alcohol is processed through the liver, not the kidneys, there are no kidney-specific cautions concerning alcohol. Most living donors have an active lifestyle. Many even run marathons and some have climbed mountains. (I’ve never been athletic but I do Zumba twice a week — and it’s not Zumba Gold!)
9. Living donors can get paid for donating their kidney.
False.
The recipient’s insurance pays for the donor surgery and evaluation, and several organizations will now reimburse donors for related expenses such as lost wages, childcare and eldercare, transportation and lodging if applicable. However, direct payment for donating an organ is illegal in the United States.
In an effort to dramatically increase the number of living donations, which has remained static for many years, there is a growing movement to change the law. The End Kidney Deaths Act, which would provide nonrefundable federal tax credits for nondirected donors–that is, donors who do not have a specific recipient in mind–was introduced in the last session of Congress.
10. If a celebrity or millionaire needs a kidney, he or she can go to the top of the waitlist for a deceased donor.
False.
No one can break into the line. The waitlist doesn’t work that way anyway. It’s managed by the Organ Procurement & Transplantation Network, or OPTN, a public-private partnership that links donation professionals in the United States. Deceased-donor kidneys are allocated based on a highly complex system that considers blood and tissue match, how long someone has been on dialysis, the kidney patient’s condition, geographic location and myriad other factors.
Learn More About Kidney Health
I hope this has piqued your interest in kidneys and organ donation. Start by finding out your own kidney function number. If you want to learn more about these important topics, here are a few respected websites:
Conclusion: Take Control of Your Kidney Health
Understanding your kidneys is crucial. Early detection of kidney issues can lead to effective management and improved outcomes. Knowing your kidney function and advocating for your health can make a significant difference.
Don’t wait for a personal connection to kidney disease. Be proactive about your health and encourage others to do the same. By raising awareness and taking action, we can improve countless lives. Start today by learning more and getting tested.