For Beth Longan, it all startedwith a routine cholesterolcheck with her familyphysician in the summerof 2001. However, hercholesterol level isn’t whatcaught her doctor’s attention.Instead, it was her creatininelevel which was just a tidbitout of the normal range at1.6. Her doctor referred herto a nephrologist, who afterperforming a number of tests,referred her to an urologist.All these referrals and testsunnerved Beth, but she wasnot panicked. At least not yet! Then the dreaded phone callcame. "Mrs. Longan, thedoctor would like you to comeinto the office to talk aboutyour lab results. And please,bring your husband or a familymember with you."
Beth’s urologist confirmedthere was a mass on her leftkidney. He diagnosed herwith renal cell carcinoma.Renal cell carcinoma is themost common type of kidneycancer. (1)It accounts for morethan 90 percent of malignantkidney tumors. Like allcancers, renal cell carcinomabegins small and grows largerover time. It is notoriouslyresistant to radiation therapyand chemotherapy. There is anaverage of 31,000 new casesin the U.S. per year. Everyyear, about 12,000 people inthe U.S. die from the disease.This news shocked Beth. "I looked at him and said all that sounds terrible. I can’t believe any of that is me because I feel good." The urologist told Beth,"Good, because if you had waited and we found this when you felt bad, it would have been much more serious."
Before the kidney could be removed, doctors had to test the function of her right kidney. And Beth was hit with more bad news. As it turned out, her left kidney, even with the tumor, was doing the majority of the filtering for her body. The good news: the cancer was contained to the left kidney. After removing her cancerous kidney, Beth’s nephrologist suggested she attend an AAKP Kidney Beginnings: Live program. Beth attended the program with her husband Norman. They both learned a great deal about kidney disease and proper nutrition. Still, she was confused as to why she needed to start thinking about her treatment options and diet. "I didn’t realize how sick I was becoming," says Beth. "In the meantime, my creatinine level just kept rising. By the time I started daily peritoneal dialysis (PD), my creatinine had reached 11."
Beth says starting dialysis treatment was difficult for her. "I was pretty much devastated. I really did not know or understand kidney failure and all the things that happen to you. I remember the first few nights we tried to connect my catheter. I would lay there on the bed and read to my husband the directions, step by step. Several nights of that first week I would cry. I thought, is this what life is going to be like? Will I have to be connected to a machine forever?"
Beth continued to work full time as an office worker at a manufacturing company. Beth says she wanted to live as normal of a life as she could. She and her husband also worked very closely with her PD nurse. Beth’s doctor and PD nurse thought she would be a good candidate for a kidney transplant since she had no other health conditions like diabetes or high blood pressure. But there was another hurdle she would have to get over. More tests revealed Beth had a high level of antibodies in her body. "Apparently, these antibodies form in your body after you’ve either given birth or have had a blood transfusion. I had, of course, both of those things," Beth says.
Months later Beth would receive a call from doctors at Vanderbilt University telling her they wanted her to participate in a National Institute of Health (NIH) study. The study was for an intravenous (IV) treatment that would lower the antibodies in her blood so that she could lower the antibodies in her body to accept a transplant. There were 10 – 15 people participating in the study. All the doctors needed were blood samples from her younger sister who volunteered to donate a kidney to Beth. The IV treatment worked and Beth received a new kidney in January 2004. As it turned out, the study was closed soon after Beth’s transplant because she was the only patient in the study to successfully receive a new kidney.
Life improved dramatically for Beth and her family until one evening while she bathe. Beth says she was sitting on the edge of the tub when she felt a sharp pain in her back. "I thought I had pulled a muscle. I thought I would just ignore it and it would go away. Well, in two weeks, the pain did not go away. All of a sudden, one of my legs started to swell." Beth says her leg swelling was the only reason she called to make an appointment with her doctor. The doctor advised her to come into the office to make sure it was not a blood clot. Beth says while she was with the doctor, she told him about her back pain. The doctor took X-rays of her chest. Her leg went back to its normal size, but the X-rays revealed something was wrong. She was then referred to a pulmonologist. The pulmonologist delivered heart-breaking news. The cancer was back. This time it had metastasized to a rib and her left lung.
Beth has undergone surgery to remove the cancerous cells from her rib. In fact, during the surgery, doctors discovered the cancer had spread to three spots on her rib. Beth then underwent four sessions of chemotherapy to shrink the mass on her lung. And in January of this year, doctors removed the mass from her lung.
Beth says she has been through a lot over the last six years. She says a supportive family, friends and faith have kept her positive and sane! The drugs from the chemotherapy leave her tired, but she still manages to get around. Advice she has for someone else who may be going through a similar situation: "Develop a good relationship with your healthcare team. Follow the diet and exercise guidelines they provide. Keep good records. Write down important doctor visits. And lastly, have faith in God and yourself. You are your best healthcare advocate."
The following Web site was used in the research of this article.
1. http://en.wikipedia.org/wiki/Renal_cell_ carcinoma
Jerome A. Bailey is the Communications Manager for AAKP and Editor of aakpRENALIFE.
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