My name is Gwen and I have gone from chronic kidney failure, to complete failure, on dialysis for two and a half years and then transplant. In chronic failure, I felt all the losses as my life was eroded away. For me, it was loss after loss and the hits kept coming until I was left with a tired, painful, small, isolated life with so little choices.
There are four truly significant losses that stand out and I will tell you about them.
One of the early losses was my profession. Being a nurse is important to me.
When I was a teenager I wanted more than anything to be a nurse, but my family didn’t have the resources for that to happen, but I hung onto that dream. When I was 26 I found out about that I could become an Licensed Practical Nurse through distance education and I was thrilled. My dream was finally possible for me. I was a mom with two young kids living in Northern BC where there weren’t any nursing programs.
A wonderful friend and I took that education and through much hardship were successful. I had three great years of being an Practical Nurse and loving it before I was diagnosed with CKD and I could no longer work 12-hour shifts on a busy medical surgical ward as my kidney function dropped lower. These shifts were 12 hours of constant running. My kidney had dropped my energy too much to handle that intense pace and I had to go onto disability.
I still hung onto my dream and I went to school once again by distance to become a Registered Nurse as I knew that part-time work and less physically demanding work was available as an RN. Three years later I graduated despite my kidneys continuing to fail even further. I worked as an RN for three years until the fatigue and illness made it impossible once again to continue in my part-time eight-hour job.
I no longer had the energy or the mental sharpness to do the job that I loved. I was put on disability again and had to leave my profession. Kidney disease took that too. I had no idea if I would ever be a nurse again. Of course, that’s when I started a Master of Nursing degree, as I truly hoped that I was not done with nursing and I’m a bit stubborn.
I did not want my choice of a profession to be dictated by the disease and I am still a nurse. I’m working post-transplant in the profession that I love as I didn’t give up and let kidney disease take that too.
However, choice is one of those early things that becomes limited quickly. For instance, I had the choice between peritoneal dialysis, hemodialysis, and dying. I chose peritoneal. I was shocked to learn that each modality has about five years on average until they fail. I’m not great at math, but this math I could do. On average, then, 10 years until death. My kids were 17 and 19. Would I even see grandchildren? I was greedy for more time and chose PD to preserve HD for later. I found it impossible to not feel this awareness of how close to dying I was. It was a shadow that I could not get rid of.
It haunted me daily as I dealt with the challenges of being on peritoneal dialysis. I found dialysis painful, complicated by hernias, and it didn’t improve my quality of life a great deal, but I didn’t want to complain as I feared the nephrologists would advise to increase the volume of fluid or increase the time I spent in dialysis and I simply couldn’t take it. I felt like I was so full that I should have had bubbles coming out when I breathed while I was dwelling fluid. It was difficult to walk as the fluid pressed against my diaphragm and I got very short of breath quickly. The only way I managed was with the night cycler and going basically empty during the day.
My day became a routine around dialysis. Bed at this time, set up the machine, cycle for this long (as long as it goes well or it may take longer), be meticulous with sterility to avoid peritonitis, shower in a specific way, dressing changes in a specific way.
We had a small house and we had boxes lining hallways and all of my closet space is filled with boxes. Dialysis literally crowded into my life and took over. Along the way it eliminated things from life to make room for itself. Things like literal space, time with my family and friends, and spontaneity was also gone. Planning every outing around dialysis was the routine. Not only because of the dialysis, but because intellect becomes clouded on dialysis
This was one of the other losses which was so distressing. I graduated with great distinction but there was a fog that just rolled in. It made it difficult to think and process. I could cover well in short conversations and pull together all of my concentration, but it took a lot of the limited energy that I had. I gravitated to girlfriends who love to talk. Number one I’m an introvert and it works for me, but two, it was so much easier to listen when my mind was in that fog. It was exhausting to have a debate and basically impossible. Thankfully, people appreciate a good listener! You know after transplant that was the first thing that I noticed. I could think again and it was amazing and I loved it.
The last loss was energy. In the chronic phase it was constantly eroded until it didn’t feel like there was anything left. On dialysis it was a bit better, but that was about it. Everything I did was measured by the energy it took.
In the beginning it was the chipping away at my energy where I could do nothing after work. I would simply rest. Before I would play with my kids, do something creative, clean, cook, play, go out with friends, shop, laugh. Life was full of choices of what to do until the choices were all about energy.
You know people always ask, how are you? I would just about always say that I was tired. No one asked what that meant. They didn’t know that the fatigue on dialysis was so profound that it took three hours to rest after taking a shower. Congratulating myself that I did it.
On dialysis, my goals were small for the day. Get up, shower, and try to feed my family. If possible, get on the treadmill for six minutes, because I knew if I could get up the energy to put my shoes on and step on the treadmill that I would go for 20 to 30 but I had to trick my mind to do the smallest step possible.
I would stare at the floor of my house and see the dirt. I would rehearse in my mind how to clean it. All of the steps over and over and over, but it was rare that I could actually get it done. It made me feel so sad that I could not get up the energy to do simple tasks.
I can do one thing what will it be? Clean the bathroom sink or chop vegetables? Cooking wasn’t about adventure like it had been. It was how I need to cook a lot of food with the least amount of energy so that I don’t have to do it again very soon
Before shopping was an adventure, an exploration, something that can take hours of walking, chatting, comparing and choosing. That was gone.
I questioned everything. Do I really need this? If I do what is the shortest path to the milk? Get in get out and don’t stop. Measure the energy. Do you have enough to get to the back wall of the grocery store? Maybe not today as it was really cold outside and just getting to the car took a lot of it.
I could hide this too as I simply declined activities that were too much or saved up the energy for one day to go out for coffee with a friend. They didn’t see it. Health professionals didn’t see it and they don’t measure it. This tiny life where I measured everything by the amount of energy that I had.
I have a great friend who had decided to be tested for transplant and she asked me to go to Vancouver with her as she was there for testing. I knew that I would no longer be able to cover the reality and she was horrified by how much I rested, how little I could walk before I needed to rest, how many times we took taxi’s because I was exhausted and we were best friends who saw each other weekly. She thought she knew my life, but she didn’t. Four weeks after transplant, she came back to Vancouver to see me. I felt like every cell in my body was singing with the energy and she had to tell me to slow down as I moving too fast for her. She loved that and was so excited for me.
Here I am post-transplant with a full life. I’ve gone from a small, confined life of waiting on life support to a life filled with creativity, laughter, and meaningful work and my health care team is thrilled for me. However, the idea of going back on dialysis haunts me as we know that grafts can fail.
What will happen to my full vibrant life should this happen? Will I be going back to few choices and much loss. To counting the cost of everything, my brain power diminished and my energy nonexistent?
I don’t want this to be my reality or the reality for those on dialysis now.
Technology has advanced so quickly and so far, but I’m just not seeing those leaps in bounds in dialysis. Why is this?
I firmly believe that we should require more quality of life, more living than life support while on dialysis. How can you make this happen?