ESRD - From A Wife's Perspective
ESRD - End Stage Renal Disease. What is ESRD? It's also known as End Stage Kidney Disease. The last stage of chronic kidney disease (CKD). It's when the kidney functions at or below 10-15% and can no longer function normally.
What's it like being a wife of someone who suffers from ESRD?
Never did I imagine, I would be in a position to be part of someone's life who would be suffering from a disease that more than 600,000 people in the United States suffer from. From a disease that could potentially take him away from me. From my daughter. From the life I pictured us living. I had a difficult time accepting this change in our lives. There were so many emotions I had towards the disease and what it did to Christian's health. I felt anger. I felt fear. I felt sadness. I felt alone. I was mad at Christian for not taking better care of himself. I was mad at myself for having to go through this as a spouse and questioned, why me? I thought back to when I married Christian, I made a vow to him that I would be there through sickness, and here I am. But I still wondered, why ME?
It was tough to get through the initial news that his kidneys were losing their function. I'll remember the conversation we had with his social worker at Kaiser, I cried. I tried holding it in but couldn't. I expressed that I was afraid to lose him. I would be left alone. I would be alone to take care of our daughter. I want him to be there for her. For us. For me.
In order for me to get over being mad at the situation, I would go with Christian to his nephrology appointments asking all the questions I had to understand what was happening to him, what we could do to make sure it doesn't get worse. I had thought we could reverse it. I was so determined to get his kidney functioning again. I was just in denial of having to go through this. People our age aren't going through this. They're hanging out with friends, dating, getting married, traveling, having kids. Enjoying LIFE. No one would understand the struggles, pain, disappointment we were and still are going through.
Christian's kidney function couldn't be reversed. The damage was already done. His doctor gave him the option to go on dialysis. It wouldn't make his kidneys stronger but it would help him until he got his transplant.
Once a patient goes on dialysis, they are put onto a transplant list. In California, you can be on the list for several years. If you're lucky to find a living donor who's a perfect match, you don't have to wait for years. (This is what we were hoping for).
At the time this was happening, our daughter had turned two and we were working on how to be the best parents we could be, spend time together as a family, traveling, having fun, making memories. But it seemed like it all came to a halt when Christian started on dialysis. I felt like we couldn't do the things we ( I ) wanted to do. We no longer could do things spontaneously if we wanted to. We had to really figure out our schedules and time everything right. It felt restricting. It was a change we needed to get used to. It took us time after the dialysis training to get on a routine. It took us about a month to figure out a schedule, and when we did, it no longer felt like we were prisoners to the dialysis machine. This was only one challenge we had to get through together once Christian started dialysis.