Your mission: a living kidney
This is Part 2 in our series: “How to get a kidney.”
So, you’ve been diagnosed with irreversible kidney disease and have made your desire for a kidney transplant known to your healthcare team. What’s next?
Step five: Educate yourself.
If you’re on dialysis or headed there, learn about your disease, its effects, and your options to control it. Read patient literature on kidney disease, dialysis, and transplantation. You can find it at your doctor’s office, dialysis unit, transplant center, or through the National Kidney Foundation. Online resources are abundant, as is my book, Surviving Kidney Disease: True Stories of Love, Courage, Hope, and Heroism…And a Roadmap for Prevention. Become an expert on your situation. Ask questions of everyone—nurses, doctors, nutritionists. You simply won’t know the answers unless you ask; healthcare providers can’t read your mind.
Join a kidney support group in your region. People with transplants or awaiting one exchange valuable information at group meetings that may help connect you with folks in similar situations or provide guidance on the “do’s and don’ts” for getting a new kidney and maintaining it. You can find these groups through your dialysis center or closest transplant hospital.
Ask your doctor if they know kidney recipients who are willing to share their stories and tips for reaching your goal. They’ve gone through what you’re going through and often have valuable guidance to offer. I have several transplant patients who volunteer these services.
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Step six: Lifestyle compliance.
Normally, dialysis makes you feel better initially —the so-called “honeymoon phase.” But you will inevitably grow bored, even agitated, by depending on a machine to sustain you 9-12 hours a week. So bored and agitated, in fact, that you may slip into a dietary comfort zone, eating foods and drinking fluids that can harm or kill you. Don’t do that. It can trigger a downward spiral that wrecks your health and your chances for a new kidney. Remember, this is a marathon, not a sprint.
Dialysis requires huge lifestyle adjustments, maybe the toughest you’ve ever faced. Nurses and nutritionists will explain the details and importance of taking your meds and adhering to a strict “renal diet” that includes limited intake of certain foods and severe fluid restrictions. Rigorously follow their advice. Take your meds every day and on time, including multiple pills required with meals. Avoiding foods you may love but that will make you sick and limiting fluid intake will test your mettle, but these are two necessities for nutritional compliance.
By complying, you’ll feel better and tolerate dialysis better. The less fluid you drink, despite raging thirst, the less stress on your vascular system and the less fluid to eliminate on dialysis. “Squeezing” 10 pounds of fluid from a non-compliant patient in one dialysis session is not only a tricky, stressful challenge for nurses, it takes more time, leaving a patient drained, cramped, and miserable. Lifestyle non-compliance can also lead to stroke, heart attack, and death.
Another benefit of compliance relates to your kidney-transplant goal. Your dialysis charts contain information about every treatment you have: weight gained between treatments, weight removed on dialysis, hours of dialysis, blood chemistry, and more. So, while you’re on dialysis at noon on a Monday, the healthcare team—doctors, nurses, nutritionists, and social workers—are in a conference room reviewing patient files. They candidly discuss cases, especially tough ones with a non-compliant patient. Non-compliance not only takes its toll on you, the patient; it’s hard on caregivers, too, who have to muscle through your resistance to provide the care you need.
Non-compliance doesn’t help your chance of getting a transplant, either. First, you may not be healthy enough to receive a cadaver kidney that becomes available at 2:00 a.m. on a random Tuesday morning. Second, if you’re non-compliant on dialysis, transplant centers are leery to risk your non-compliance with a new kidney, considering 70,000 other people in the U.S. are also waiting for one. In short, kidneys are too precious a resource to waste on non-compliant patients. In short, compliance will make you feel better and help you get a kidney quicker.
Step seven: Get on the transplant list.
As soon as your healthcare team, in coordination with your local transplant center, deems you an acceptable transplant candidate, they’ll register (or “list”) you with the Organ Procurement and Transplantation Network (OPTN), which maintains a centralized computer network linking all regional organ-gathering organizations and transplant centers. The United Network for Organ Sharing (UNOS), a private nonprofit organization, administers OPTN under a contract with the federal government.
You’ve come a long way, digested devastating health news, managed the shift to dialysis, complied with its regimen of lifestyle restrictions, informed yourself about your options, and now taken a big step toward receiving a new kidney. You’re “listed.”
Step eight: Find your own donor.
Since the wait for a genetically compatible cadaver kidney now averages 5-7 years, you shouldn’t sit passively, waiting for the renal version of the Publishers Clearing House to call.
Become your own advocate: go find your own kidney. You’ve already been deemed a suitable candidate, now you can speed up the process by finding a living donor. Many times, a family member will step up. They often make great donors, being genetically similar to you. If you need a kidney, and they offer, accept it. I’ve had patients with healthy, willing family donors tell me, “I don’t want to disrupt their lives,” or “I couldn’t accept a kidney from my own flesh and blood.” And there they linger, awaiting a cadaver kidney that may arrive, may not.
Certainly, this is a matter of individual choice. But realistically, for a dialysis patient, your own flesh and blood is exactly what you need, exactly what will give you the best chance for a successful transplant that lasts many years. Plus, consider this: donors, especially family members, want to help because they love you. With so many other diseases—heart disease, Alzheimer’s, Parkinson’s, or many types of cancer—family members can do nothing but watch in agony, praying their loved one will survive. They don’t have a spare heart, brain, pancreas, stomach, or liver to give them. Why deny them the eternal satisfaction of rescuing you from that cliff from which you’re dangling? Honestly, this is no time for martyrdom. If you get the chance, get out of that dialysis chair and get on with your life.
Step nine: Learn to network.
Let’s assume, now, that you don’t have family members either willing or able to donate. Then it’s time to spread the word, because, thanks to breakthroughs in immunology and genetic matching, people not related to you can make great donors, too.
Start with the internet, email and Facebook, for example (and there are more social-media platforms). Think of all the people you know—friends, colleagues, church group, college roommates, book club, bowling league—then get their email addresses and blast off a simple query.
Here is the approach Lisa Emmott, a tireless champion for people who need a living kidney donation, used successfully for her husband.
Find a Kidney for Neil
Neil Emmott is a loving husband and a devoted father to two young daughters. Neil is in ESRD (End Stage Renal Disease, Stage 5 of 5) due to Polycystic Kidney Disease. Neil’s kidneys are failing, and he needs a kidney transplant from a living donor as soon as possible. Neil is currently listed on the deceased donor organ wait list, however his projected wait-time on the list could be 7 years or longer. There are many benefits of a living donor transplant, including significantly higher long-term survival rates. Two family members have already been tested and evaluated, and they are not approved to donate a kidney.
Neil’s medical team at The Johns Hopkins Hospital has advised him to focus efforts on finding a potential donor in the O blood group (O+ or O-).
Neil’s need is critical. Please share this message with as many people as possible.
There are no medical costs associated with kidney donation.
Donor surgery and hospital stay
- The donor surgery takes approximately 3 hours.
- Donors are usually in the hospital for 1 to 2 days after surgery.
- In most circumstances, once the donor is approved, the surgery can be scheduled in about 4 to 6 weeks, dependent on donor’s schedule.
Helpful and informative links are listed below.
Donors must specify that they want to donate to Neil Emmott and include his DOB. Donor anonymity is guaranteed. There is never any obligation to donate, and any potential donor can change his/her mind at any point, for any reason. If anyone has specific questions about the donation process, please contact the pre-transplant coordinator at John Hopkins (410-614-9345). Again, anonymity is guaranteed.
Additionally, Neil’s wife, Lisa, has been through the donor process, and is more than happy to answer any questions you may have. Lisa can be reached by email
Please share. A conversation can save a life.
Simple, direct, Lisa’s approach offers two advantages:
First, when somebody sends a query on your behalf, it removes some of the pressure a recipient might feel about saying no to your face. Moreover, it is powerful to receive a humane outreach by a friend or loved one on behalf of somebody else. Recipients have the time and space necessary to digest the information, discuss it with others, and reply or not. Receiving an email directly from you might make them feel pressured and less likely to fully consider their options.
This approach also encourages recipients to forward the message to other people, who also forward the message, and so on. In this manner, you start a chain reaction that may result in a kidney donation from a friend of a friend of a friend. I’ve seen this happen more than once. There are heroes out there, we just don’t know who they are until times like this. And they often come from the most unexpected places. So, spread the word and don’t be discouraged by a lack of response. Challenge yourself to see how many “no” responses you can get before receiving that one, wonderful “yes.”
Step 10: Get to know your donor.
A hero has offered you a kidney. This loving gesture, from whomever it comes, is always jaw-dropping. The first thing to do—unless they’ve requested anonymity—is meet and talk with them, take walks together if you live in the same town and begin sealing a special bond the two of you are creating. It also allows the two of you to discuss the lifesaving importance of this gift and the process for delivering it.
Next comes the “work up” at your local transplant center. You and your potential donor will be evaluated separately. They will have blood tests, a chest X-ray, a psychological evaluation, and more. If they’re deemed fit and ready to move forward, the transplant team will set a surgery date. Before that day, you may be treated with pre-transplant infusions and plasmapheresis to reduce the chance of rejection.
Step 11: Transplant day.
Congratulations! The life-changing day has arrived! On transplant day, you’ll be wheeled into an operating room, where a team of experts—transplant surgeons, urological surgeons, highly trained nurses, anesthesiologists—are waiting for you and your donor kidney, the latter delivered by a similar team of experts in another room, on the “extraction” side of this double surgery.
Usually, the surgery will be done laparoscopically—for both you and the donor. You’ll sleep for a few hours and wake up with a new kidney. You’ll be blurry and dopey for a while, hooked to a jungle of machines, monitors, and tubes. Doctors and nurses will attend to you regularly. You’ll feel like their top priority, their only priority. If the kidney has started working immediately—as they often do—doctors will inform you as your creatinine level steadily drops toward your ultimate baseline. Patients tell me that on about the third day post-transplant, they can feel wellness returning as their blood chemistry normalizes. For many, it brings buckets of tears to feel well for the first time in a long time.
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