So what happens next after you find out you need a kidney transplant? Honestly? I started to think about getting my affairs in order. It seems morbid, yes, but if something were to happen to me I wouldn’t want my family trying to sort through my life. Realistically I made sure my filing cabinet was organized and did the mountain of laundry that had been piling up on my side of the bedroom. I had a will already and I reviewed my wishes with my loved ones.
I also started a support group on Facebook and invited a few close friends and family to join. I wanted somewhere to post updates related to my health and not have to repeatedly explain it. Fast forward to today and that group grew to over 50 people and was more supportive and encouraging for me than I ever could have imagined.
I was more sick than I thought when I look back on it now. My head was cloudy, and I kind of just floated through the days. My failing kidneys were struggling to keep the fluid from building up in my swollen body. I was easily winded. I wasn’t often hungry. My heart always felt like it was going to beat right out of my chest. I physically didn’t miss a day of work, but my head wasn’t in the game. I went to all my appointments and followed all doctors orders.
In October I decided that I needed to take some time off work. My body was failing me and I needed to focus on my health. My employer was very supportive of this and with approval from my doctor we decided that I would work until November 4.
I was feeling good about it. It was time for me to take care of me. I was feeling strong until I had to tell my team at work that I would be taking some time off. I supported 14 people and to talk to them face to face and say out loud that I was sick was a lot harder than I thought it was going to be. I cried. Some of them cried. I also had to tell my peer group and hand-off some of my work tasks. That one was hard too, and I was thankful that my support person stepped in when she heard my voice start to crack. Many of my peers were spread across the country and had no idea I was even sick. We didn’t go into detail but I really felt the love and support of our tight knit team.
On October 26, 2016, almost two months after finding out I needed a transplant, I didn’t wake up knowing that day would be any different than the rest. I had been propping myself up to sleep because the fluid in my lungs was making it hard to breathe. I could hear my heart beating in my ears and I developed a hand tremor that made it hard to text. I called my nurse at the CKD clinic and told her what I was feeling. She called me back after speaking with my nephrologist and told me I needed to go to the emergency department. I finished my work day and went home to talk to my husband and pack a few things. I was so scared.
When we got to the foothills hospital (hereby known as the foothills), I remember struggling to walk from the parking lot to the building. The line up to be seen by triage was short enough that I was still out of breath when I got to the front. I explained my situation and what I was experiencing as she fitted my arm with a blood pressure cuff. Blood pressure 220/140. Shit. Heart rate 150. Shit. I went back to the waiting room and waited for my name to be called next.
I very vividly remember this wait. Trust me, it was not long. There was a lady there that was just livid that she wasn’t being seen immediately, because her doctor had told her to go to emergency. I remember thinking, calm down lady. We ALL have doctors that told us to come here. It’s called triage for a reason. The lady got so upset she left. I guess maybe it wasn’t an emergency? I often wonder what happened to her. I bet I waited only 10 minutes before being taken to the back. Because of this experience I have complete faith in the triage system. No, I do not like waiting to see a doctor but I feel like as long as I’m waiting, someone else who needs more medical attention than me is being treated.
By this time my parents and sister had arrived. My husband had left to take the kids to their moms house. I still didn’t feel as sick as everyone thought. Before I knew it I had wires and tubes and what felt like 10 doctors working on me. It wasn’t until I saw the look on my sisters face that I finally realized that I was in trouble. I had gone into congestive heart and kidney failure. SHIT.
They were able to stabilize me with some IV meds and I was admitted into unit 37. The kidney unit. They monitored me closely over the next few days and I distinctly remember the doctor coming in and telling me that I needed to start dialysis. But I’m not ready! I haven’t picked which method I want yet! I still have a week of work to get through! My world stopped.
October 30 they installed a dialysis catheter in the right side of my chest. I didn’t have an option to choose a method. I needed dialysis now. Within minutes of it going in, I was receiving my first dialysis treatment. I was terrified. I mean, we had learned about it, but what was it going to feel like? I called my husband and he came to sit with me. Just his presence makes me feel like everything is going to be alright. It didn’t hurt, and after my first 4 hour dialysis run I felt like I could breathe for the first time. Do you know when you’re camping in the mountains and you first open the motorhome or tent door and you take that deep breath of fresh mountain air? That’s how I describe dialysis.
I went home the next day with my new dialysis schedule. Three times a week for four hours each. This was going to be my life now. I was already exhausted and dialysis isn’t all clean blood and fresh air. It’s a whole new post on its own.
Until next time friends. Thanks for reading.
Kari's Kidney 