Kim Wong explains how she has dealt with chronic kidney disease for 24 years and continues to focus on the positive through it all.

When Kim Wong noticed her legs and feet swelling and felt constantly exhausted, she knew something was wrong. A trip to the doctor’s office confirmed her suspicion; she was diagnosed with chronic kidney disease (CKD). That was 24 years ago. A kidney biopsy identified the specific problem as glomerulonephritis, a type of kidney disease caused by inflammation of the internal kidney structures or glomeruli.

As a substitute teacher, it was important for Kim to continue working. She tried to keep her mind off her illness, but it was difficult to forget when complying with a special diet and many medications. “To live a normal life, I kept busy by working, crocheting or traveling, while at the same time adjusting to a special diet, medications, blood tests and doctor appointments.” Kim focused her attention on her day-to-day tasks instead of worrying about what the future might hold. “You never know how much time you might waste by worrying.” Meanwhile, she and her family have been to Alaska, China, Singapore, Borneo, Malaysia, New Zealand, Australia, England, France, Germany, Switzerland, Italy, Spain, Russia, Finland, Norway, Sweden, the Caribbean Islands three times, Turkey and the Greek Isles. “I traveled with a hand-carried bag full of medication, but that doesn’t matter when looking back through the picture albums full of memories,” Kim says. 

Her two daughters, who were 10 and 12 when she was diagnosed with CKD, lived a normal life with girl scouting activities, dance lessons, ski lessons and sorority life in college. In addition, they worked part time and then full time upon graduation. Now they are married with families. One daughter is a head buyer for Merle Norman and the other is a Doctor of Pharmacy at UCLA Home Health Care. Kim says, “I am glad we focused on raising my children instead of my illness. Now that they are grown, we live for our three grandchildren.”

Her husband, a pharmacist, helps her stay compliant with her medications and makes sure she knows how to take them according to their directions. He also encourages her to exercise. Since she has taken a leave of absence from work, Kim is able to spend more time with her family, while focusing on maintaining her health. “Having a very understanding spouse who shares, listens and gives you emotional support during times of crisis is most crucial in fighting depression.” When Kim experienced a bout with depression, her husband was vital in lifting her spirits.

When Kim was first diagnosed with kidney disease, she took the initiative to learn more about her condition and what to expect. She read AAKP materials and researched diseases such as IgA Nephropathy, sometimes called Berger’s Disease. “Learn as much as you can about your kidney disease,” she says. She suggests patients collect and keep a file of information and record test results, because information may be needed later.

Kim also joined the AAKP Harbor-South Bay-Orange County Chapter where she was able to learn more from other’s experiences as well as from the magazines and educational materials provided. “Sharing experiences with other patients gives you moral support,” Kim explains. “It is good to listen to other people.”

For patients with CKD, Kim recommends following doctors’ orders and procedures and taking medications, but also making your own decisions. “You can only make educated decisions by being an informed member of your healthcare team and that means you have to read. Have enough knowledge to make good decisions and rely on someone for moral support, that is so important,” Kim states.

A few years after she diagnosed with CKD, it was discovered she was also diabetic. Her blood sugar was very high. She tried to control her diabetes at first with pills but then became insulin dependent. Kidney problems, diabetes and high blood pressure runs in her family. Along with her parents who are both diabetic, her uncle has kidney problems and two of her cousins have had kidney transplants. Testing for kidney disease early on when there is a family history, is important to slowing the onset or progression of kidney disease.

This past year Kim was told that she was close to dialysis. In preparation, she had a fistula put in her left wrist. She went to the 2003 AAKP Annual Convention in New Orleans to learn as much as possible about the various treatment options she had. “There are all sorts of options for dialysis; there is peritoneal dialysis, home hemodialysis, nightly hemodialysis – so many to choose from. I have to pick one that is right for me and offered on my insurance in my area. There are many stipulations.” Although Kim is preparing for dialysis, she still has kidney function remaining. “Luckily, I have low blood pressure which may be one reason why my kidney disease has progressed so slowly.”

Kim recommends patients find a qualified internist to take care of overseeing all areas of their health, especially if they have multiple problems such as diabetes, high cholesterol and heart problems. Kim was sent to several pulmonary specialists to solve eight months of a chronic cough. She was referred to cardiologists to take care of her congestive heart failure, arrhythmia and a weak heart due to a heart attack eight years ago. When she finally had an angiogram, the cardiologist used only 30 percent of the dye in order to save her remaining kidney function. After the angiogram, her kidney function dropped only a few tenths.

Throughout her 24 years living with CKD, Kim has had her ups and downs. However, she remains optimistic about what the future holds. Kim will continue to stay positive and focus on her life while she waits for what lies in front of her.

This article originally appeared in the March/April 2004 issue of Kidney Beginnings: The Magazine, Vol. 3, No. 1.

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