There’s no doubt about it: Getting a kidney transplant requires careful consideration. If you have the right information, it makes your decision that much easier.
Considering the benefits of a successful kidney transplant (such as longer life expectancy) and the procedure’s high success rates, one thing’s for sure: Whether you are newly diagnosed or have been on dialysis for years, transplant should be considered as an option and explored with your nephrologist.
Missing Information, Missed Opportunities
Patients dealing with chronic kidney disease often begin dialysis before going through an evaluation to determine if they qualify for a kidney transplant. And sometimes, patients stay on dialysis not ever knowing that a new kidney may be a better option. Getting the right information about your options is key to not only your quality of life, but also to your survival.
Dialysis, though a life-saving therapy, is a less-than-perfect option to treat kidney failure. The longer a patient stays on dialysis, the longer they are exposed to chronic effects of kidney failure and dialysis, including issues such as heart problems, hardening arteries, chronic inflammation and infections.
“Once a patient is diagnosed with chronic kidney disease, they should follow up regularly with a nephrologist who should be proactive, pointing them toward a transplant evaluation once their kidney function declines to about 20 to 25 percent,” explains Roy Bloom, MD, Medical Director of the Kidney and Pancreas Transplant Program at Penn Medicine’s Transplant Institute. “When that doesn’t happen, a serious opportunity is missed, or at least jeopardized.”
Why? Because while not a guarantee, kidney transplants are associated with several considerable benefits compared to dialysis. These include greater life expectancy, better overall health and improved quality of life – including freedom from the severe restrictions of dialysis treatments.
Ty Dunn, MD, Surgical Director of Kidney and Pancreas Transplantation at Penn, explains the difference in outcomes. “Not many people live more than 10 years on dialysis. On the other hand, I tell patients that they can expect, on average, 14 to 16 years of function from a kidney that comes from a living donor. In low-risk patients who do well that first year following the transplant and who really take care of themselves, that number can reach 20 years or more.”
Shortening Your Wait, Improving Your Outcome
Waiting for an organ can be an emotional and stressful experience, but as Dr. Dunn sees it, the wait is just one more reason to get evaluated for a transplant as soon as possible.
“Organs are primarily allocated based on time spent waiting, so the sooner you’re on the list, the better.”
The sooner you are listed and transplanted, the better for your health.
It is important to know that you do not have to do dialysis before you get a kidney transplant. In fact, patients who receive a new kidney before starting or after a short period of dialysis have better outcomes than patients who have been on dialysis for a long time. Patients who have spent no or minimal time on dialysis tend to be healthier and stronger, in part because their disease hasn’t progressed, but also because dialysis is hard on the body.
More Life to Life: Living Donors
One way to get to transplant sooner is through living donors. That is, healthy family members, friends and acquaintances who step up and offer one of their two kidneys. Living donation is common among kidney transplant patients for many reasons – less wait, less recovery time and more life to live.
Think about it: A living donor lets patients sidestep lengthy donor waiting lists. With nearly 100,000 people on the national wait list for a kidney, a living donor can be key to decreasing the wait from many years down to months and can even help the patient to skip dialysis altogether with a “just in time” transplant from a living donor.
But living donors aren’t always easy to find. Even when a patient knows someone willing to donate a kidney, a thorough evaluation is needed to determine whether that person is healthy enough to be a donor. It’s a journey that can reach a crossroads when the donor may not be a match for the patient.
Luckily, some comprehensive transplant centers, such as Penn Transplant, offer a program that works to increase the chances of achieving a living donor kidney transplant. This program, called Paired Kidney Exchange (PKE), facilitates the “swap” of donor kidneys between donor-recipient pairs in case they don’t match. You would receive a living donor kidney from a different donor with whom you match, and in turn, your living donor will donate one of their kidneys to another recipient in a similar situation.
While it may not be possible to find a suitable match for everyone, enrollment in this process can expand the opportunity to receive a transplant. Penn actively participates in national PKE programs to help expand the donor pool for patients.
At the end of the day, remember that even if you do not have a living donor, there is still no reason to avoid a transplant evaluation. If you are evaluated and it is determined that the benefits of transplant outweigh the risks, then getting on the waitlist as soon as possible for a deceased donor can be life-saving. However long that list might be, it’s one step closer to a healthier life.
Never Been Evaluated for a Kidney Transplant? Here’s What It Takes
Transplant eligibility is more common than many people think.
“Very few patients are not candidates for kidney transplants,” Dr. Dunn explains, adding that even candidates who are found ineligible at first often receive specific instructions for changes they can make in efforts to gain eligibility down the road.
But for some people, hesitation to get evaluated has less to do with outcomes and more to do with mystery surrounding the evaluation itself: Is it painful? How long does it take? What can I expect? Is the hassle worth it?
The Penn Transplant Institute diligently works to make evaluations as efficient as possible. Patients can usually schedule an appointment for a transplant evaluation within a few weeks of calling. Medical records are gathered and reviewed prior to the appointment, not only so doctors can start getting to know the patient, but to rule out any disqualifying factors before a patient comes in.
“Evaluations start with a review of patients’ health records and their experience. We get to know their entire health picture from records and then from meeting in-person,” Dr. Dunn explains.
When scheduling, Penn suggests choosing the transplant evaluation location that is most convenient for you. For most patients, this is the Penn Transplant Institute location closest to their home or closest to the home of a committed caregiver.
Evaluations require patients to come in to the clinic for a half day, and sometimes for a second day, depending on what other appointments might be needed. Evaluation always begins with a class so patients and their caregivers can learn more about transplant.
“The class provides essential information about transplant and statistics about survival rates and outcomes for different scenarios,” Dr. Dunn says. “Patients can review the information and follow up with their own research at home.”
A transplant evaluation consists of a series of appointments with members of the transplant team, including consultations with kidney specialists, transplant surgeons, social work, dietitian and the financial team.
“The financial team is very helpful for patients. They look at things like projected monthly outpatient expenses post-transplant,.” Dr. Dunn explains, pointing out, for example, that Medicare benefits for medication coverage last three years after a patient is successfully transplanted. “The financial coordinators make sure that a patient will have the means to pay for necessary medication once those benefits expire and help problem-solve insurance issues..”
Social workers take part in this type of evaluation, too, discussing details like reliable transportation and medication adherence habits.
Within about a week of the evaluation, a patient’s candidacy is discussed at Penn Transplant Institute’s weekly patient selection meeting. A comprehensive team of providers involved in transplant care all meet to provide feedback. Sometimes additional tests are requested. Whatever the outcome, patients hear back within two weeks of their evaluation.
Taking the Next Step
An evaluation is just one to two days that could be the start of your journey toward a healthier life.
Talk to your nephrologist today. If you would prefer to speak to someone directly at Penn Medicine’s Transplant Institute, call us today at 800-789-7366 or request a callback through our online form.