first noticed symptoms of extreme fatigue and soreness in 1981. This was very unusual for her at 19 years of age; she had been an athlete and enjoyed competitive volleyball from the time she was in junior high school. She thought that perhaps she didn't warm up properly and assumed these symptoms would go away in a day or so. When several weeks went by without any improvement, she met with a physician for further evaluation.
It took several months of seeing different doctors, taking lab tests, as well as a skin and muscle biopsy, before she finally received a diagnosis of systemic lupus erythematosus (SLE).
She was sent to an internist who had followed other lupus patients. He prescribed an initial dose of 40 mg prednisone. Some of the side effects she endured due to long-term prednisone use included a puffy face, weight gain, easy bruising of the skin, and an unsightly hump forming on her upper back.
The changes in her appearance caused her to lose some of her self-confidence. Fortunately she continued to have the support of her friends and family. She also had a boyfriend who offered her much encouragement. "I felt different from my peers but my friends stood by me. During our get-togethers, I felt guilty cutting the evenings short, but I tired easily and had to learn to pace myself."
She appeared to be sun sensitive and would get frequent bouts of Rosacea. She started wearing both sun protective clothing and a sunscreen to help reduce the lupus flares that often occurred during the summer months. Unfortunately, through time and repeated lupus flares, she started developing kidney involvement. This was discovered through routine blood and urine tests in 1984, at which time she started seeing a nephrologist.
At this time she was in college, and because of ongoing health issues she dropped from being a fulltime to a part-time student to reduce the level of stress in her life.
Her nephrologist recommended a low protein (40 grams), low sodium diet. Contrary to this advice, a previous internist had recommended a high protein diet. She realized at this point she had to take a bigger role in her own health care management instead of blindly following what her doctors were recommending.
Her nephrologist warned her that if she didn't stabilize her blood pressure and adhere to this strict diet, her kidney function would deteriorate rapidly into end-stage renal disease. "It was very difficult to follow the low protein diet," she commented. . She was also prescribed Imuran to control her lupus flares. The progression of her kidney involvement did slow down due to the change in treatment and diet.
At that point, she was undecided as to a major in college. She remarked, "I was very interested in computer science but switched my major to nutrition to become more knowledgeable and take a bigger role in my health care."
She graduated from U.C. Berkeley in 1986 and worked for the next three years as a hospital dietitian and in private practice. Eventually she decided to stop working in a hospital; she concluded that caring for hospital patients with contagious disease was not a good risk for someone with lupus who had a weakened immune system. Although she reduced her hours from full-time to part-time, she was still so exhausted at the end of a work day that she had to take a 3-hour nap before she was able to fix dinner.
Her spouse, Perry, asked "Why are you working? You should take care of your health first." It was a difficult decision to quit working entirely, but she decided to devote her time and energy to regaining better, more stabilized health. She moved to Salinas in 1991.
Although she managed to slow the progression of her kidney disease, eventually it reached the point where she needed to be on dialysis. She was put on peritoneal dialysis in 1994 and she was able to administer it to herself at her home. As soon as she was stabilized, her nephrologist encouraged her to place her name on the kidney transplant wait list. Jennifer was hesitant, as the peritoneal dialysis was working well. Her doctor insisted, since she was young and mobile, that she should prefer a transplant. She referred her to some of her other transplant patients, and they enlightened her about how a transplant could change her life for the better. The nephrologist estimated it would take up to three years before a kidney would became available; her doctor told her "at this point you can always refuse the kidney and the next person in line would be more than happy to take your place." After more research, she decided to sign up and was listed for a kidney transplant at Stanford.
Later, in 1996, when she was stable on dialysis, she started venturing out more and began traveling for a few days at a time. On one of her quick trips to Las Vegas, and as unbelievable as it may seem, she actually performed her own dialysis on the plane! This, of course, is not recommended; dialysis ideally should be done alone in a private room to minimize the threat of infection. Traveling became one of her life's passions and eventually she began working for her brother-in-law's travel agency.
After three years on dialysis, a kidney became available for her, and the transplant was performed successfully in March 1997. She was initially prescribed cyclosporine and Imuran to suppress her immune system. After a year, the cyclosporine became less effective and her physician changed her medication to Prograf. The new combination of drugs seemed to work better. This therapy will need to be continued for the rest of her life to keep her transplanted kidney from being rejected. She is greatly relieved that she does not have to perform daily dialysis any longer and very grateful to her nephrologist for insisting she get a kidney transplant.
The travel business has worked out well and she is fortunate to be able to work from her home. She can do as much or as little as she feels up to doing, so it has been an ideal career change. She loves being able to take advantage of the occasional travel opportunities and can now plan longer trips. She was able to take a two-week trip to China, her original home.
Jennifer offered the following advice to other lupus patients, "Read up on your disease and the complications you have had. Even though your doctor prescribes a specific therapy, don't be hesitant to ask for a second opinion. Your doctor should welcome any questions and requests for another doctor's input. It's your health and you are your best advocate."
"Through my research I found the Lupus Foundation of Northern California (LFNC) and discovered they had more current information than what was available at the library and other resources. This information was invaluable to me. I also attended some of their semi-annual conferences which were very helpful. I requested medical articles from the Foundation's library and visited their website. To show my appreciation and support of the LFNC, I joined as a Lifetime member."
Jennifer concluded, "although I have had a lot of serious health issues, I am very content with my life. With the right mindset and attitude, you can overcome most adversity. As the old adage states, take the lemons and make lemonade."