My Terrific ‘Normal’ Life

By Leigh Anne Tanzberger

Normal life on dialysis

I was born June 13, 1970 in Houston, Texas, a healthy, “normal” baby girl. At age 3, my family moved to Kenner, Louisiana, outside New Orleans. As a child, I loved sports. I played volleyball, basketball, and softball. I was best at softball. I played each summer in a neighborhood league. One of my childhood friends that I played with, Paige Weber, was the best in the league. She went on to play softball on a statewide level.

I continued playing sports during the summers. In July 1978, my mother was concerned because I woke up three mornings in a row with puffy eyes. My mother took me to my pediatrician where he ran a number of tests. They really did not tell me anything. I just kept going for more tests. I eventually ended up in the hospital for a kidney biopsy. I still was not really sure what was going on. The tests showed focal segmental glomerulosclerosis, an autoimmune disease that destroys the kidneys. Living in New Orleans, I was fortunate to have access to top-notch medical services at the teaching hospital of Tulane University Hospital and Clinic. I also had the opportunity to have a new pediatric nephrologist from Cornell become my doctor.

Dialysis, Needles, and a New Diet, Oh My!
The doctors did not know the extent of the disease. They tried chemotherapy to stop or slow down the progression of the disease, but it didn’t work. Within 18 months, in December of 1979, I had to start hemodialysis three times per week. My father would take me first thing in the morning and stay until I was connected to the machine. Since I was only nine, he told me to hold his hand and look the other way while they stuck me. I would hold his one finger and look in the opposite direction. I truly believe this is why even today I cannot look whenever someone sticks me.

One thing I didn’t have a problem with, however, was the required diet. Because I really wasn’t set it my ways or habits, it was very easy for me to adapt to the renal diet regulations. My mother never cooked with salt and as a family, we never ate salty foods. Even though we were living in New Orleans, we did not eat things like red beans and rice or jambalaya. I was never a real drinker either. I just started eating more ice whenever I got thirsty.

Dialysis Friends
When I first started dialysis at age 9, I remember dialyzing with three other children. At that time, the dialysis center was one room in Tulane. Tobius was a three-year-old who would come each time with his mother. He was so cute, with big brown eyes and a huge smile. My parents found out one day that he had died on a Friday and opted not to tell me until after the weekend. I cried like a baby when they told me…I couldn’t believe it. He was only three! This was also the first time I had to deal with death. The second child, Carol, was a teenager and eventually had a transplant and went on to get married, but died shortly afterwards due to non-renal related reasons.

The third child, Cassandra, was a year younger than I was and we became “dialysis friends.” Her mother would bring her to dialysis, but she wouldn’t make every session. Cassandra also did not seem to have the parental support that I did. Cassandra’s mother wouldn’t oversee her diet or fluid intake, and she ended up in the hospital more often than not with fluid overload.

Summer Camp
In the summer of 1980, Cassandra and I attended a summer camp in Georgia for transplant and dialysis patients. Oh, how I hated that place! While I realize that many kids have positive experiences at these summer camps, this was not the case for me. They drove us to dialysis at 4 a.m., having to drive over an hour to reach the dialysis center. Then we had to wait for every person to get off dialysis until we could return to the camp. We would return exhausted, but were not allowed to rest. We had to get right into daily activities. There was no overseeing the kids. We could eat what we wanted whether it was renal friendly or not. We could drink what we wanted whether on a fluid restricted diet or not. I watched in disbelief as Cassandra would fill her 32 oz. glass three times a day! Yet, we were both on a 24 oz. a day fluid restriction. I knew she would get fluid overloaded, but she didn’t seem to care.

At dialysis on Monday, the head nurse came to me and asked me what went on at camp with Cassandra. When I asked why, I was told she ended up in the ER completely fluid overloaded and was in intensive care. I told the nurse how I watched her fill her glass three times a day with as much as the cup could hold. Cassandra survived that bout, but a few years later, I found out that she had died.

At that moment, I realized that I was the “lone survivor” of the four original children who started dialysis in that one hospital room in Tulane. I wasn’t quite sure how to handle this. I didn’t know how long I had to live, so I started making deals with God. I would ask him to let me live to 15, then 18, 21, and so on.

As a teenager, I didn’t really do anything exceptional as far as coping with kidney disease is concerned. My mother started getting involved with the National Kidney Foundation of Louisiana. At this stage in my life, I was in the frame of mind that if I did not associate with anyone who had kidney disease, then I did not have to face having the disease. I was given the cards I was given and I had to learn to deal with it no matter what. My grandmother always told me that God would not give me more than I could handle. I had to figure a way to handle this disease. At age 21, I realized I had to live my own life because God was going to take me when he decided it was my time. I decided the best thing for me was to make kidney disease a part of my daily routine.

From Transplant to Peritoneal Dialysis
At age 10, I was lucky enough to receive a transplant. It lasted just under four years, due to the disease going back into the transplanted kidney. When I was a freshman in high schoool. I had to return to dialysis. I decided on a new home therapy called peritoneal dialysis. It was something that I could do myself and it would allow me to stay in school full-time. We were able to arrange my schedule where I would have lunch and a free period so I had the time to go home and do an “exchange.” My mother picked me up and drove me back for my afternoon classes everyday for four years.

As a freshman, my old friend Paige Weber and I ended up in the same Catholicism class. I remember we went on a day retreat and our assignment was to name something you knew you were good at.  I couldn’t think of one thing. Paige told me to put down “playing softball.” I told her I hadn’t played softball since I had gotten sick. She told me that I was so good at softball that if I hadn’t gotten sick she could see me playing softball and going to state playoffs with her.  I was stunned! It was the single best compliment I have ever received.

College, Me, and PD…and a few bumps in the road
After graduating from high school, I attended Loyola University in New Orleans. My parents thought it was important for me to live on campus to experience “true college life.” We arranged for me to have my own dorm room and my parents would deliver my PD supplies to me every Sunday.

During the summer of 1990, my parents and I moved to southern New Jersey. I enrolled in Rutgers University where I commuted to school. I arranged my schedule so I had enough time to drive home, do an exchange, and then drive back for my afternoon classes. It was the perfect situation for me.

In 1992, when I was a junior, I found out during spring break that I had to have my parathyroid glands removed. I had surgery on a Monday. On Friday, the doctor came and told my mother and me that during surgery “something just didn’t look quite right” so he sent the tissue to pathology. It came back as Papillary Carcinoma. At that moment, I cried and told my mom the only thing I do not want is cancer. She said, “Well, honey, that is what carcinoma usually is. ”One week later, right to the minute, I had my thyroid gland removed.

My parents and I decided to deal with this straight on. We talked with the best doctors at HUPP (Hospital of the University of Pennsylvania) to decide the best course of action. We took everything one day at a time. They recommended radioactive iodine to destroy what thyroid tissue was left. I took two doses, one where I was isolated in my hospital room because it was a big enough dose that I would be radioactive for 72 hours. Regardless of what had to be done, I did it. Thankfully, I can happily say I have been cancer free for almost 15 years!

How Quickly Things Change
In May 1993, I graduated from Rutgers University School of Business, and we moved back to Louisiana in June. We lived about an hour north of New Orleans. I started working full-time while still doing PD. I would do an “exchange” in a designated area or go home for lunch and do an “exchange” and then go back to work for the rest of the day. It was part of my daily routine. It got to the point where my body would know if I had done an exchange or not. I remained on peritoneal dialysis for 14 years. It got me through high school, college, and a few years beyond college. These were 14 years that I lived the life of a normal teenager growing up into a successful career woman.

In 1999, I unfortunately had to have surgery to remove the parathyroids implanted in my right arm at HUPP in Pennsylvania when they removed my parathyroid glands. I did an exchange in outpatient surgery before surgery and ended up with a fungus infection. Within 72 hours, my life had completely changed. I had lost the ability to use my peritoneal cavity. I went from being very independent doing four exchanges a day to going to in-center hemodialysis three times a week. This was a huge lifestyle change. I was used to doing a lot of things alone. I would travel alone and even went on a cruise with friends. I just arranged to have all my PD supplies sent to the ship.

In 2000, because of my dialysis schedule, I was only able to return to work part-time. I started in retail and learned that I really liked it. I started at Ann Taylor Loft and in 2001, I moved over to Brighton Collectibles. Two years later, my parents and I moved to Houston, Texas and I was able to transfer to a Houston store for Brighton Collectibles.

In September 2003, I learned I needed surgery because of a fibroid tumor. The surgery was scheduled for Wednesday, October 22. I worked the Tuesday before and told everyone that I would only be in the hospital for four days and would be back at work the following weekend.

The next thing I remember was waking up on November 18. I do not remember October 22 through November 18. It took a while for anyone to tell me exactly what happened. They just kept saying there were “complications.” I was hospitalized in Intensive Care for a total of 63 days. I was finally told that the surgeon who removed the fibroid tumor had cut my colon, but did not know it for several days. By the time it was discovered, my entire abdomen was full of peritonitis and I was septic. I was told that I had to have two more surgeries: one to resect 7-8” of my intestines and then a second one to repair a stitch that had burst.

In the meantime, my entire abdomen was left open in order for it to heal from the inside out. Because of the seriousness of the infection, the surgeon who did the resection made sure that he was the only person to change the vac pump (which helped cleanse the infection) and the drape-bandage dressing. In my mind, I became his favorite patient. During this period, I was also told that I was septic twice and almost died twice. I was in Surgical Intensive Care for weeks. During this time, I remember very little.

Some Dark Moments but Then… Hope
When I was more aware of the situation and what had happened, I started realizing what my life was going to be like. I started thinking about suicide. Fortunately, it only lasted a brief time. I talked with a nurse who had an ostomy too about how she handled it in the beginning. She had thought about suicide as well. A lot of people do in the beginning. She now holds a full-time job and made sure this medical setback did not keep her down. I decided I needed to adopt her attitude and realize that this was just another set back in my many medical setbacks in my lifetime.

However, I wasn’t quite sure how all this was going to play out when it came time for me to go home because of the intense care my particular ostomy needed. I was honestly scared to death to go home. I didn’t know what was going to happen, how everything was going to work. I was used to the doctors and nurses taking care of everything. I didn’t know if it could be done correctly at home.

The weekend before Christmas 2003, my doctor came in my room and asked me if I would like to go home. I reluctantly said yes that I would like to be home for Christmas, but that I did not know how or who would care for my ostomy. He told me that I would be put in touch with a home nursing company. I would have a nurse come to my home for 6 months. The first nurse came the day after Christmas. For quite awhile, we had nurses everyday, then three or four times a week.

You would have thought I would be relieved to be home, but it truly was the worst six months I can ever remember. The nurses really did not do a good job, at least by my standards. I would have a nurse come in the morning and hours later, the ostomy would be leaking all over the place. And, of course, the nurse wouldn’t be able to come back for several more hours. I was beside myself, lying on my bed crying – holding a towel to the ostomy for hours on end until the nurse was able to return. I was thinking this was definitely no way to live. Once again, I thought about ending it all. No more suffering. I had done plenty. I definitely could not see myself living like this for the rest of my life.

After six months of having nurses come to my home, my mother had to learn how to change my ostomy or “my bag” as we call it. The nurses showed her what to do, but did not teach her any particular method for changing it. The nurses also showed her some products they used. Once my mother started changing my bag, we had to experiment and see what would hold and what would not. We had a lot of leakage in the beginning which was extremely frustrating, but we had to go through an adjustment period. On her own, my mother came up with a combination of products that would hold. She now has my bag to where we can go as long as a week without any leakage but we usually do it twice a week to keep the skin in good condition.

In December 2006, I had a minor procedure done in Galveston, Texas. The doctors told my mother she was doing a fantastic job of changing my ostomy. They told her the skin showed no signs of breakdown and looked very healthy. Before I left the hospital in 2003, my surgeon told me the most important thing was to keep the skin healthy.

As you can see, I have definitely had my brunt of health obstacles. Without the support from my parents, I may not have been able to overcome many of these. I am taking everything one day at a time, and at the same time, educating myself about any complication that could occur. My pediatric nephrologist used to joke with me that if something could happen “outside the norm,” it would definitely happen to me. Whatever is considered normal, my body does the opposite!

A “Normal” Life
So, you ask yourself—what is a “normal” life? Normal is an individual person’s perception of what one wants their life to be. I can say without hesitation that I DO live a normal life. I just have obligations I have to keep during the week in order to remain healthy.

First, I have my dialysis responsibilities three times a week for three hours per session. Second, I must change my ostomy bag twice a week, which only takes about an hour. Once I am finished with these obligations, I go on my way and live life just like every other person does. Now that I am older, I have learned that knowing other individuals who have lived with kidney disease is very beneficial. We can trade “war stories” and I know exactly how the other person feels.

I have also become more of an advocate for other kidney patients. Right now, I sit on two Texas Boards. I am the only patient who has been asked to sit on the Texas Renal Coalition, which reviews renal legislation that has been introduced and decides if it is favorable to kidney patients. We try to help elected officials make informed decisions. In July, 2006, I was appointed to the Patient Advocacy Council of the End Stage Renal Disease Network of Texas, an organization that oversees all 400+ dialysis centers in Texas and is overseen by Medicare. I am also on the weKAN committee (wellness and education-Kidney Advocacy Network), a program of the Renal Support Network, where we advocate for national renal legislation in Washington, D.C.

As an active advocate for renal disease, I hosted the First Annual RSN Patient Education Meeting in Houston on August 27, 2006. We originally hoped to have at least 75 registrants. We far exceeded that number with a total of 215! Experts spoke about transplantation, the different dialysis modalities, anemia, and how to ask questions of your renal care team. The evaluations were so positive that the 2nd Annual RSN Patient Educational Meeting will be held August 26, 2007. The renal patients in Houston are so excited and enthusiastic for information about coping with their disease, the renal diet, and all the treatment options available to them.

I am grateful to be living my “normal” life. Even with everything I have been through and with all the other complications I have not mentioned, I have been able to achieve living a normal life. And with similar perseverance and attitude, it is possible for anyone to do the same.

normal life on dialysisAbout the Author 
Leigh Anne Tanzberger has been a renal patient since 1978. She is very active in the renal community. While living in New Orleans, she was Trustee of the National Kidney Foundation of Louisiana and was Vice President, then President of the New Orleans Kidney Patients Association. She is now a member of Renal Support Network’s weKAN committee, is on the Patient Advocacy Council of ESRD Network 14, and is the only patient to serve on the Board of Directors of the Texas Renal Coalition.

04/01/2007

Web ID 366

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