COPING WITH KIDNEY FAILURE: Retired San Jose teacher seeks donor

THE OHARAS — (From left to right): Robin’s late husband Stan Ohara, Robin Ohara, son Scott Ohara, daughter Julie Ohara Suliguin, and Julie’s husband Jayvee Suliguin. courtesy of the Ohara Family

A mother, retired school teacher and caretaker to those around her, Robin Ohara is as giving as she is compassionate. Now in her greatest time of need, however, those closest to her are unable to give her what she needs the most: a kidney transplant.

Today, more than 26 million Americans over the age of 20 have chronic kidney disease — approximately 13 percent of the adult population — the National Kidney Foundation reports. Each year, more than 70,000 Americans die from causes related to kidney failure.

While kidney disease affects Americans spanning all ethnic backgrounds, Asian Americans and Pacific Islanders — as well as other minorities — are at higher risk for kidney failure than Caucasians. Diabetes and high blood pressure are major factors in contributing to kidney disease. Diabetes is the number one cause of kidney failure and causes half of all cases in the U.S., states the American Kidney Fund. High blood pressure is the second most common cause of kidney failure.

Ohara is one of thousands on a waiting list for a kidney transplant. In 2007, she became aware of potential issues with her kidneys after receiving her lab results following a routine physical. She was referred to a nephrologist because of a slightly elevated level of creatinine, which the National Kidney Foundation describes as a waste product in the blood that is normally removed by healthy kidneys. When kidney function slows down, creatinine levels rise.

The specialist checked her kidneys and monitored her creatinine levels. Several months later, Ohara experienced spontaneous hemorrhage around her kidneys. It is unclear whether this contributed to the renal failure.

Then, in January 2008, Ohara felt suddenly ill and had difficulty breathing. She was sent to the emergency room, where she was told her potassium and creatinine levels were high and she would need dialysis. After a hospital stay and dialysis treatment, she was sent home for three weeks, but her creatinine levels remained high.

Ohara was diagnosed with end-stage renal disease, or kidney failure, later that month, just shy of her 61st birthday. She was told that given her blood type, there would be a seven to 10-year wait for a cadaver kidney in Northern California, and that her best chance was a living donor.

Despite Hardships, a Source of Strength

A San Jose resident, Ohara is the mother of two grown children. Ohara’s family and friends know her as a caring and reliable person, a source of strength and support to others. Those who know Ohara consider her as a true caretaker.

A former student described the Sansei as “truly genuine; one of those teachers you’ll always remember because she truly cared about the success and well-being of each student she taught,” and “a wonderful teacher with a kind heart.”

Life has not been easy for Ohara, both before and after being diagnosed with end-stage renal disease. She has endured numerous hardships in recent years that have added to the physical and emotional stress of her medical condition. Some of these difficulties include the passing of her father on Thanksgiving Day in 2006, losing her sister-in-law to stomach cancer in 2007, the passing of her mother-in-law after a stroke in 2008, and losing her husband, Stan, to a brain tumor last year. Three months after her husband’s death, Stan’s brother-in-law also died.

Through it all, she has continued to be a source of strength to her friends and loved ones. A family friend said, “Robin is a very strong individual who always remained positive during her family tragedies and gave strength to others in her family despite her own medical conditions.”

Determined and strong-willed, Ohara drives herself to and from a dialysis treatment center three days a week, something that many dialysis patients cannot do themselves. The procedure is necessary for patients with end-stage renal disease, as it cleanses the blood and essentially performs the function of healthy kidneys. On days that she receives dialysis, Ohara wakes up at 5 a.m. At the center, she is put on the dialysis machine for three hours. She must keep both arms straight and remain still for the duration of treatment, unable to do much of anything except watch television. Regarding the treatment, she says, “I usually feel OK during the dialyzing, but at the end I sometimes have issues with low blood pressure, leg cramps, or some bleeding.”

Coping with Drastic Changes

Ohara tries to maintain a normal and active life despite the five-hour commitment that each visit to dialysis requires.

“It has been hard to deal with the loss of spontaneity in my schedule, but I have responsibilities and want to lead as normal a life as possible,” she said.

Ohara says the most difficult aspects of being diagnosed with kidney failure are not physical, but emotional and psychological. She has made drastic changes to her lifestyle — including to her schedule and diet — and coping can be difficult.

Ohara’s family and friends have supported her since she was diagnosed. Many of those in her support network have been tested to see if they are a potential medical match as a kidney donor. Perhaps most surprisingly, one of the first who came forward to be tested was a former student of Ohara’s from 20 years ago.

Leslie Huang, a recent graduate of Santa Clara University Law School, was Ohara’s student in the third and fourth grades. Ohara’s impact on Huang is clear: “Mrs. Ohara was a teacher who genuinely cared about the success and well-being of each student in her class — all the kids loved her,” Huang recalled. “She is very caring, always looking after others, and has a great sense of humor!”

Huang and Ohara continue to keep in close contact through e-mail.

When asked why she decided to come forward to be tested as a match for organ donation, Huang replied, “Why not? I figured it was the least I could do to help Mrs. Ohara, given all that she’s done for me and other people, too. She would do the same for those that she cares about. I never thought twice about it.”

Unfortunately, after the first round of initial medical tests, Huang was not found to be a compatible match for Ohara.

To date, none of Ohara’s friends and family members is a positive medical match for organ donation. Nonetheless, she remains on the waiting list for a kidney donor, as the search for a positive match continues.

How to prevent kidney disease

1. Get tested. Talk to your doctor about being tested for diabetes, high blood pressure and kidney disease. Many patients with kidney disease never have any symptoms until it is too late. Ask your doctor to tell you your glomerular filtration rate (GFR), which tells how well your kidneys are working.

2. Eat right. Eat foods low in fat and cholesterol, and high in fiber. Limit alcohol consumption.

3. Live healthy. Exercise, maintain a healthy weight, don’t smoke or use tobacco, and treat bladder and kidney infections fast.

4. Manage diabetes and high blood pressure. Diabetes and high blood pressure cause about three out of four cases of kidney failure. If you have either, talk to your doctor about how to keep them in control.

Source: www.kidneyfund.org.

About kidney transplants

According to the National Kidney Foundation, the organ most commonly given by a living donor is the kidney.

There are several advantages of living donations over non-living donations. A kidney from a living donor usually functions immediately, making it easier to monitor. Some non-living donor kidneys do not function immediately, and as a result, the patient may require dialysis until the kidney starts to function. For the living donor, there are risks to consider, such as scarring from the operation and an increased risk for high blood pressure.

The National Kidney Foundation also says, however, that many people live normal lives with only one kidney.

The National Kidney Foundation says there are several steps one who is interested in becoming a living donor for a specific person should take before being tested to see if they are a match:

The potential transplant recipient must first be evaluated to make sure they’re a good candidate for a transplant and that they would benefit from the procedure. This must happen before any potential living donors are considered.

Once the recipient has been approved for a transplant, then interested or potential living donors should contact that transplant center or hospital to ask about donation. (In order to be deemed a successful match for Ohara, testing can be completed through the Kidney Transplant Program at Stanford Medical Center. The Program can be reached at (650) 725-9891).

The potential donor can withdraw at any point during testing. The process is completely confidential.

To learn more about living donation, visit: www.livingdonors.org.

To learn more about kidney disease, non-directed donation, or non-living donation visit: The National Kidney Foundation’s Website, www.kidney.org or the American Kidney Fund’s Website, www.kidneyfund.org.

—     Kristen Sato