Organ donation: New research seeks improve the gift that keeps on giving

As director of kidney and pancreas transplantation at Mount Sinai and the medical director of the New York Organ Donor Network, Michael J. Goldstein is a transplant surgeon whose vision is to increase patient access to transplantation through an innovative clinical style, as well as enhance the number and quality of life-saving organ donors. He oversees the clinical management of donors for the New York metro area and performs over 100 kidney transplants a year.

Who's at risk

About 86,000 Americans are currently waiting for a kidney transplant. "People who need kidney transplantation have minimal to no kidney function due to chronic kidney disease," says Goldstein. "Some patients develop disease that is limited to the kidneys, but most develop kidney failure from diabetes and/or high blood pressure."

In New York state, more than 7,000 people need a kidney transplant — with 80% of them living in the New York metro area. And every group in society is at risk of kidney disease.

"The gender differences aren't significant," says Goldstein. "There are strong differences between different ethnic groups, but everybody is at risk." African-Americans have a higher risk of developing kidney failure, he said.

The only treatments for end-stage kidney disease are dialysis and transplantation, but there is a critical shortage of available organs.

"The waiting time to get a kidney transplant in New York is around four to six years, one of the longest in the country," says Goldstein. "The fewer organs we have, the more people die while waiting."

Each year, about 35,000 patients are added to the waiting list, and only 16,000 get a kidney transplant — which amounts to about a fifth of those who need them. About 60% of donated organs come from deceased donors, with the other 40% coming from living donors — mainly relatives and friends.

Signs and symptoms

"The scariest part of kidney failure is that it's silent," says Goldstein. "The majority of patients have no idea they have kidney disease." Most patients are diagnosed at a doctor's appointment when they get routine blood work.

"One of the blood levels, called creatinine, is elevated, or they have protein in their urine," says Goldstein. "But they can't feel these things." The amount of urine produced is not a gauge of kidney function.

When kidney disease goes undiagnosed until end-stage renal failure, some patients end up in the ER with complications. "Most people live their lives and feel great until they've lost 80%-90% of their function," says Goldstein. "It's hard for them to imagine that they feel so good and yet they need a transplant or dialysis."

The most common symptom of kidney disease is fatigue, which of course is not a specific warning sign. Once patients get to end-stage disease, they can develop high blood pressure, progressive anemia or fluid overload that can show up as swelling in their legs.

Traditional treatment

Patients with advanced kidney disease still have two options: dialysis or kidney transplantation.

"Dialysis is a great backup mechanism in that it's life-saving. It's disruptive of lifestyle, but it does sustain their life for a long time," says Goldstein. "Nevertheless, what they need is a new kidney."

Most patients just need one kidney from a healthy donor to get off dialysis.
Transplants are highly effective, but not curative. "People can develop recurrences of kidney disease in the transplanted kidney," says Goldstein. "And any transplanted kidney will not last forever."

The average life of a kidney from a deceased donor is 7-10 years. From a living donor, it's 17-20 years. Goldstein recommends patients in need of a kidney transplant ask themselves, "Is there anyone in my family or community who might be a living donor for me?"

There are four advantages to a living donor: Patients don't linger on the wait list, the kidney almost always has immediate function, the kidney is usually healthier, and it lasts on average twice as long as a kidney from a deceased donor.

The kidney transplant operation takes about three hours under general anesthesia. "The vast majority receive one new kidney, which we often put in a different place than their original kidney," says Goldstein. "The patient's own nonfunctional kidneys rarely need to be removed."

Most patients stay in the hospital three to five days. After surgery, patients can return to work and lead normal lives, as long as they stick to their medical regimen. "One would not be able to easily identify a transplant patient," says Goldstein. "The only difference between them and anyone else is that they're on medication to make sure their body doesn't reject the kidney."

These immunosuppressants are now safe, with minor side effects. "These meds keep the kidney from having early rejection 90%-95% of the time," says Goldstein. "It's like taking vitamins for their kidney every day."

Nonetheless, transplanted kidneys don't last forever, so many patients end up getting another transplant 10 to 20 years down the line.

Research breakthroughs

Treatment for kidney disease has improved radically in the past 50 years, but doctors are still working for better treatments. "The longstanding dream of doctors in transplantation is to achieve something called tolerance — the ability of one patient to accept another person's organ without the ability to recognize it as different," says Goldstein. "We're looking for ways to fool our bodies into accepting another person's organ without recognizing and rejecting it as foreign."

Questions for your doctor

Once you've been diagnosed with a kidney disease, the first question should be, "Is it appropriate for me to be referred to a kidney transplant program at this time?" If you've reached the point of needing a transplant, changing your lifestyle can make things easier, so ask, "How can I optimize my diet and exercise routine to make myself the best possible transplant patient?"

What you can do

Guard against diabetes and hypertension.

They are the two leading causes of kidney disease, so preventing them, detecting them early, and managing them once they've developed are key to preventing kidney disease.

Get evaluated at a kidney transplant program.

Dr. Michael J. Goldstein advises being evaluated as early in the disease as possible and certainly before you go on dialysis. The transplant center can make sure you get on the wait list as soon as it is appropriate.

Get informed.

Start with the website for organ donation, donatelifeny.org, which carries helpful information for both potential organ donors and recipients. For information on kidney diseases in general, check the National Kidney Foundation at kidney.org.

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