I’m a professional change manager. Whether the change is big or small, it’s my job to get people to move from the way they’re doing things now (i.e., current state) to a different way of doing things (i.e., future state) so that a goal can be achieved. A big part of my job involves making change as easy as possible for others so that they see the benefits of the future state and willingly adopt it. And yet, despite my experience and knowing the theory behind change, the past month and all of the changes that have come with it have still been really hard.
I’ve lived with chronic kidney disease all my life. Intellectually, I knew I would probably start dialysis one day. Although, I had hoped, like many others, that I would find a pre-emptive transplant before that day came. I had lots of plans on when and how I was going to manage a pre-emptive transplant or the transition to dialysis and had even discussed them with my nephrologist. But my body had other ideas. At the beginning of March 2023, things were going to plan by the end of the month I was in the Emergency Room because my blood pressure was low, my heart rate was high, my chest was tight, and I was unable to keep the fluid off my legs. The time had come, and I was having to face some major lifestyle changes.
Not Taking Things Well
The thing about change is that it’s an individual process with different phases. If you look at the picture with the curved line, I ended March and started April being confused about what was happening, why it was happening and why it was happening now of all times. Ending up in the hospital for 10 days was not in my plans and it was physically and mentally exhausting. Plus, I had been resisting dialysis and trying to do everything in my power to avoid it. Most of the rest of the month was spent at the bottom of the curve in the pit of despair because I was overwhelmed with everything that was happening. Even though I was only getting my bandages changed, I cried the entire drive home from my first appointment at the dialysis center because the reality of seeing that catheter coming out of my stomach finally hit me. Then there was the anxiety of having to wear a heart monitor for two weeks and constantly looking at my pulse and the other readings on my Apple Watch wondering if I was having another A-fib episode every time I saw a high reading. As if that wasn’t enough, I started dialysis training and I had decided to learn how to perform my own dialysis while I continued to look for a living donor.
Coincidence? I Think Not!
Then, a funny thing happened. Within a couple of weeks of starting dialysis, I started feeling good. Not just recovering from surgery good, but better than I’ve felt in a long time good. It turns out that during my 10 days of dialysis training I managed to shed 2+ liters of fluid. (This was in addition to the 3 liters that I shed during emergency surgery.) As much as I hate to admit it, the dialysis was working. Suddenly I’m not going along with these changes because I have to, but because I can feel the benefits and I want to! It also helps that I’m doing dialysis at home, on my time , and around work and other things that are important to me. Learning how to do your own treatments is very empowering. It gives you back some of that control that you feel like you’re losing when you start dialysis. If you look at the curve, I’m moving towards motivation and understanding which, ultimately, is where I need to be if I’m going to be successful for however long I’m on dialysis.
Celebrating the Wins
Change is hard and celebrating the wins, both big and small, is important. As much as the month of April has been physically, mentally, and emotionally challenging, there was a little celebrating along the way and some wins worth noting:
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- I made it out to brunch on Easter Sunday!
- Friends that I haven’t spoken to in a long time have reached out.
- At least one of my pairs of jeans fits with my peritoneal dialysis catheter and bandages.
- My most recent chest x-ray came back clear.
- I was able to walk up and down 4 flights of stairs in a parking garage at the hospital. I couldn’t have done that a month ago.
- The speed and amount of time I can walk on a treadmill is gradually going up.
- I’ve been cleared to go back to work.
- I made it home from the hospital in time to see my daughter off to her prom!
In the beginning of April, I was cruising with chronic kidney disease, like I had my entire life. By the end of April, I became a person with chronic kidney disease that had started dialysis. It was scary and intimidating at first, but I made it through to the other side. I embraced the changes that I had to make and I’m better off for it. I really didn’t grasp how tired I had become, and I didn’t realize how much better I would feel once I started dialysis. Life is a lot more fun when you’ve got energy! I’m already on the national transplant list. I’m searching for a living donor and I’m eager to embrace another change when the time is right, a kidney transplant!
Kristin Rice is a life-long kidney patient who is currently on PD dialysis. She’s been an active member and volunteer with RSN since 2020, Kristin is married with a daughter and two fur babies. She works full-time as a change manager and enjoys helping people talk through the various challenges and changes that come with managing CKD.
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