Dialysis: The Goal is to Thrive, Not Just Survive
It is the summer of 1985. I'm 13 years old. But unlike other 13-year olds, I am extremely fatigued. I'm not feeling well and not eating. All I can manage to do is go from my bed to my couch. My mom thought I was just being lazy that summer. I did not want to go out and hang outside with all the other kids. All I would literally do is just lay on the couch all day. Multiple bouts of what we thought were UTI’s and other illnesses had me in the emergency room, week after week. One day I woke up extremely fatigued and ill with my hand swollen, and no explanation. I was admitted to the hospital, and my condition was so grim that my mom was told to call the family in. The doctors felt that I would not make it through the night.
Well, I did make it, and was transferred to La Bonheur Children's Hospital in Memphis, Tennessee. It was there after a couple of weeks, that doctors diagnosed me with Lupus, an autoimmune disease, where the body attacks itself. Lupus usually presents in women of child- bearing age. At 13, I certainly did not fit that avatar, and was not understanding it all. As the oldest of four girls, a lot of things pivoted at home. I was my mom’s main source of help, and wasn’t fully up to the task.
I returned to middle school that fall. As far as I am concerned, that was one of the worst years of my life. I didn't return to school excited like most kids did. I returned with a round moon face, a lot of hair, and about 75 extra pounds due to massive doses of prednisone for the Lupus. Not only did I not understand what was happening to my body and appearance, neither did my classmates. I would hear the whispers, “Why does she look like that?” “What happened to her?” my classmates would wonder. I was devastated, depressed, anxious, self -conscious, and not wanting to go to school.
During my ninth-grade year, we relocated back to California. My prednisone was tapering off, but my Lupus was not adequately treated. My doctor informed me of the plan to treat me with chemotherapy, once a month for 6 months. Because Lupus and how to treat it were still so unknown, chemotherapy was the treatment of choice. In case that wasn’t enough to absorb, I was also told that I would lose my hair, be unable to have children, and would most likely have to start dialysis in 2 years because of the effects of chemotherapy on my kidneys. This was difficult to hear and process.
At 14 I already have so many other things going on inside and outside of my body. And, now I need to have chemotherapy for a disease I don't really understand, and am being told I will probably never have children. All of this at a time when some teen girls are already planning their dream wedding, if only in their heads.
So, I go through the chemotherapy once a month for 6 months. For the most part it was relatively uneventful. However, the weekends going in for it, took me several days to recover from. The time did come for me to start dialysis, almost 2 years to the date that I was diagnosed with Lupus. I had lots of questions. Do I have to be on dialysis? It consists of a tube in my stomach. I will be on a machine for 10 hours a night? What 15-year-old wants to hear the answers? So once again I go down the depression and anxiety rabbit hole; more questions twirling in my head. Will I ever fit in? Will I ever be normal? Will I ever get a boyfriend? Will I ever get married? Will I have friends? Will they accept me? These questions went through my mind, day in and day out, as I prepared for peritoneal dialysis and actually started training to dialyze at home.
Keeping with that schedule each night was extremely difficult for me. I was attending high school full time on a normal schedule. The only thing that was not normal about my schedule is that my doctor removed me from regular PE class. I was put in an adaptive PE program, which basically meant we just put on our gym clothes and watched other students in the gym.
Otherwise, I was still in classes taking honor classes, keeping up with my courses and my grades, but had to dialyze for 10 hours each night. This meant that I had to be on the PD cycler by eight o'clock that evening to get those 10 hours in, and off around six o'clock in the morning. I then had to disconnect, break down my machine, and get myself ready and off to school.
I felt like I was missing out on everything, and family time because my cycler was in our bedroom. So, anything after eight o'clock I just missed. Any chores or homework had to be done prior to connecting at eight o'clock that night. This was 7 nights a week, as many PD prescriptions are. I did that for about 2 years, then I decided that I wanted to go into a dialysis center for treatment, to get a little bit of my freedom back.
So, in ‘89, the last semester of my junior year of high school, I did just that. I was admitted to an in-center facility and went after my last class on MWF. I did my homework at dialysis, slept, and talked to the staff to pass time. My social life picked up some. I met some life-long friends, but was still self-conscious. Now I had a graft in my upper left arm, but the PD catheter that I remembered being long as a jump rope was gone. So now instead of trying to conceal that, I was concealing my graft with long sleeves even in the summer.
My senior year, I applied and was accepted to Tennessee State. Now, at this point we are living in Ontario, California, and I decided to go 2000 miles away to attend college in Nashville, Tennessee. That was going to be a big undertaking for several reasons. I was going to be alone there. I had grandparents who lived about 3 hours away. I was going to be on dialysis, and was not allowed to have a vehicle through my first year of college. So that meant that I would have to take public transportation from my college campus to downtown Nashville 3 days a week.
I did this for a whole college year. I was very private about dialysis. I continued to wear clothes to conceal my access. No one knew what I was doing, except for my roommate. People noticed that I was missing big chunks of time throughout the day, but I would return to the dorm with some excuse after dialysis and just get in my bed, because I was so wiped out after my treatment.
In 1991, after returning home for the summer break, I decided not to return to Tennessee State to continue my studies. I was severely homesick. All of my friends were there in California, and all of my family was in California. It was a very huge challenge to keep up that schedule that I was keeping up with and maintain my grades in Nashville.
I returned home and just kind of wandered around for a little bit, I didn't really know what to do or what to be. I did some odd jobs. I returned to my very first job at McDonald's, I worked at a barbecue joint, and as a telemarketer in which I was fired for low conversions. I was put on the transplant list while in Tennessee, so as luck would have it, was called for a kidney in the spring of 92. The kidney was not a great match, only 3 of 6 antigens, however because of my age I was encouraged to take it. I flew to Tennessee with the assistance of my nephrologist and was transplanted at Vanderbilt University.
My first transplant was not smooth sailing. The kidney did not wake up immediately, so I had to have several dialysis sessions. I developed an infection during the surgery, and had to be opened back up, to allow the wound to heal from inside out by packing it with normal saline soaked gauze. I recuperated with my grandparents in Jackson, Tennessee, and was finally allowed to travel back home to California. I’m there just trying to find my way, and one day I saw an advertisement for a Medical Assistant program. And I was like, this may be interesting. I can “see” what nursing is about. Well it is not the same as being a nurse, but I applied, was accepted, and went through that program with honor grades. I was very proud of myself, but unable to secure a job as a Medical Assistant, questioned my decision several times.
By this time, I had met the man who was to be my first husband. He was from Mississippi, but he was working for Walmart opening a store. He was traveling around the states opening up Walmarts when we were introduced by a mutual friend. We ended up dating, and the opportunity for him to return to his home in Mississippi came about. At that time, we were in love and decided we were going to make a go for it together, so in April of 94, I left California to live in Mississippi with him. I was still enjoying my transplant, feeling well, and ready for a new adventure.
Again, I was extremely far from my family and homesick. My grandparents were fairly close in Tennessee, and we knew the couple that relocated with us, but I wasn’t working. I finally secured a job at the local hospital as a phlebotomist because I still could not secure a role as a Medical Assistant. I looked for jobs in some of the skill sets that we were trained in, and that is how I initially was introduced to the nursing field with a real and different lens.
At this time, I have convinced myself that I could be a nurse, but still wanted to “try” it out, so I enrolled in the local LPN program for 18 months, with my best friend who worked in the phlebotomy department with me.
I lost my kidney during that time and returned to in-center dialysis. I did not miss a beat in the program and graduated in 97’ with my class by going to dialysis in the evening, after school and clinical sessions. I had that kidney for about 3 ½ years. My doctors and nurses continually told me that I should come work in dialysis when I finished my program. In my mind, working in dialysis and being a dialysis patient would just be too much. I would never get a break. I took a job in long term care and received my second kidney transplant in 1999, about 3 years after losing the first one. It was a miracle because I needed a perfect six antigen match due to antibodies from the first transplant, Lupus, and multiple blood transfusions.
During the 9 years with the second kidney, I was able to return to obtain my Associates of Science Nursing degree in 2002, and start my career as a dialysis nurse. All the while, I was still adamant about not working in dialysis and being a dialysis patient. Ironically enough though, I drove to the nearest dialysis clinic near my home and applied for a job the day that I took my boards. It just so happened that the manager at this clinic, Rhonda, used to be one of the nurses who took care of me when I was on dialysis and in the LPN program.
I had no clue that she was working there as a manager, and she had no clue that I had gone back to school to become a RN. She told me to not apply anywhere else. Between her and Shirley, another nurse who took care of me who was now a manager as well, one of them would hire me.
I didn't apply anywhere else because at that moment, I knew in my heart that being a dialysis nurse was what I was supposed to do next. A week later, Rhonda called me and said a nurse had just resigned, and did I want the position? That is how I became a dialysis nurse in June of 2002, and the trajectory of my dialysis nursing career just continued to build from there.
In January of 2003, I met the man who would later be my second husband right there in that same dialysis clinic as he visited his brother who was my patient one fateful Saturday. About 7 years in with the transplanted kidney, I started to show signs of rejection. However, once again I packed up and relocated this time to Virginia, as my then-boyfriend was in the Navy there. I ended up working in an acute dialysis program, and in 2007, eventually lost that second kidney after almost 9 years and returned to dialysis.
I was in a really bad place. I was angry, frustrated, mad, depressed, and anxious. I didn't know what was going to be next. I wasn't feeling well. I didn't know how I was going to continue to keep up the pace that I needed to keep up in order to maintain my current job. I quit my job and had nothing lined up. My then boyfriend was in Bahrain for the next year, so one of my sisters relocated to Virginia to help and support me emotionally. I will always love her for that.
I happened to land in a small DaVita clinic with 12 stations as a patient. The team was super nice, and they knew exactly what they were doing. I just felt like that could be a place where I could resume my dialysis career, and so I did. With a change in dialysis centers for my treatment, I was now an in-center nurse again. Treavce, the manager at the facility, quickly saw what I brought to the role in the skill set, and a different lens as a patient. She encouraged me to return to management, which I did after returning to school for my Bachelor’s of Science Nursing degree.
Becoming a manager in 2010 is what ultimately led me to home hemodialysis (HD). I needed the flexibility, as my schedule was not a typical 9-5. I still frequently staffed my clinic as a nurse or tech, whatever the need was, as I was extremely short staffed. In addition, I was commuting an hour each way to return home and to my dialysis clinic. I eventually moved to the city that my clinic was in and started my home HD training. I was making it happen at work and in life. I got promoted to manage three facilities, and eventually to manage the 14 home programs in my area.
Over the years, starting at age 14, I've had over 8 grafts. I could never receive or mature a fistula because of my vascular condition, mainly due to Lupus. And because grafts tend to not last as long as fistulas, and combined with again Lupus, I had several. In 2008 my last graft was placed in my right thigh. I fought tooth and nail against it. But because I have had multiple grafts in both arms, I had exhausted my vascular access options and had nowhere else to go but my thigh or return to PD, which I did not want to do at the time.
Through multiple declots, two revisions, and two blood clot episodes that required surgery to remove the clots from my R leg and knee, the graft held up for 8 years in my right thigh. Finally, in 2018, we couldn't use that access. My vascular surgeon just couldn't declot or revise it any more. I reluctantly made the decision to return to PD, because mentally I could not make the decision to have a graft placed in my left thigh; my last available spot for vascular access. I wasn’t prepared for knowing that this could be my last option to dialyze. But, my earlier experience with PD and peritonitis, had left a bad taste in my mouth, despite being a Home Program Manager and knowing the benefits.
PD wasn’t a certainty, as the concern was scar tissue and adhesions from my first go at PD from peritonitis episodes, and the subsequent kidney transplants. My surgeon told me if I woke up without a catheter, he was unable to place the catheter, and I would need to have a graft placed in my left thigh. Gratefully, I woke up with a PD catheter—and one that was a fraction of the length of my first one 31 years earlier.
So, I returned to PD, where I started as a 15-year-old girl back in 1987. Today, I am on the transplant list for 13 years. I've had to be inactive for various medical issues throughout the last 3 years. I've had two cancer scares of the kidney and cervix. Thank God that both biopsies showed no cancer. I've had three DVT’s, one from a temporary femoral catheter for dialysis. I had a hiatal hernia the size of onion that I had to have repaired, a bilateral nephrectomy, and bilateral Bell's Palsy all in the last 3 years. Those are just the major things.
All of this took a toll on me mentally and physically, and I was experiencing burnout at work. I was longing to do more for the renal community but did not have the energy or time working in the corporate space. So, I made the difficult decision in May of 2020, to leave my job that June to start my own renal consulting and patient advocacy firm last year. That is how iKARE Renal Solutions, LLC was born.
Being an entrepreneur is not for the faint of heart. It’s a lot of work, money, and long nights to see your dream to fruition. The balancing act is just as needed to properly take care of yourself with kidney disease. I have been blessed and fortunate to have the support that I have had from family, friends, and coworkers over the years that has allowed me to basically do anything that I set my mind to.
If you're reading this and doubting that because you have kidney disease that life can go on, and with quality, I urge you to think again. Change your mindset, change your life. I had to learn that myself, and occasionally have to remind myself of how far I’ve come, and where I still want to go. I went to nursing school three times, as an LPN, ADN and BSN, had a great nursing career, and have been married twice. Now, I’m not sure if that's good or bad, but in a world where dialysis patients often struggle to not only find a suitable partner, but to maintain their partners, after one gets ill, it’s important to know that it’s possible to find and create loving relationships despite kidney disease. Lastly, find ways to fit kidney disease in your life, not your life around your kidney disease. The goal is to thrive, not just survive.