I am now in kidney failure. I found out last Thursday, the same day Chronic Resilience was officially released. Life is wonderfully ironic.
It is weird to type that word. Failure. It doesn’t feel like failure; it feels like my kidney worked really hard for more than 34 years and it is tired.
Thursday started with a stop in at the lab. My care is through UC Davis Medical Center. I like to go to the lab near the transplant center because, if you time it right and no one is waiting, you can park in the free 15 minute spaces and avoid paying. Unfortunately, it was morning, and I knew I would be in for a wait.
After grabbing my number and taking a seat, I decided that the main clinic lab might be quicker. One phlebotomist and 7 waiting was a recipe for at least an hour. I jumped back in my car and drove to the other side of the hospital. I was right, 4 phlebotomist and 4 waiting is a better formula.
It ended up being a double stick day. After 2 (of 3) tubes, the tourniquet was removed and my vein shut down. No harm done. I’m used to these blood draws now. I felt kinda tough with the double bandages.
That evening I received a call from my doctor. You know it’s not the best when your doctor calls to give you test results the very same day as the test.
My creatinine is 4.4. Normal range for a woman is 0.6 to 1.1. Creatinine is one of the waste products that our kidneys filter out of our blood. For me, this means that I have 11% kidney function. Anything less than 15% is considered stage 5 chronic kidney disease (a.k.a. kidney failure…insert ominous music).
Our evening call was brief because I had an appointment with him the next day where we could go over things in detail.
We’re not exactly sure why I slid so quickly to 11%. I had been bouncing between 15% & 17% for the past few months.
In May, I started to have more serious issues with excess potassium, enough that I had to be taken completely off of my blood pressure medication which my doctor felt was elevating my potassium. Your kidneys regulate your blood pressure, and I wasn’t on a very high dose but apparently I needed it. Over the past two months my blood pressure has slowly risen. We don’t know if this rise caused the quicker decline in my function or if my function declined caused my blood pressure to rise. A nice circular conundrum.
Odd thing is my body is still handling this really well. Phillip called it “mathematical” kidney failure because I’m not showing dramatic symptoms. I can pretty easily get through the day. I’ve had a few odd things here and there, but nothing that has completely slowed me down yet.
I do have to admit that hearing you’re in kidney failure will make you feel more tired and achy than you may have otherwise noticed. Just sayin. I kinda want to take a nap now.
So we had to adjust course. I started on two new medications to tackle the blood pressure issue. These act differently on the body than my old medication did, and they won’t raise my potassium. One is a diuretic which will actually make me pee out more potassium. The diuretic will also make me super sun-sensitive, so I got to walk the dogs this weekend in my REI spf had. I’d been looking for a good excuse to wear that.
We’re going to recheck everything at the end of this week once my blood pressure has come back down. This will tell us if the kidney failure reading was an anomaly from the high bp or if my function took a permanent dive.
From here on out I’ll do lab tests every two weeks to keep an eye on things.
Because my care is at a teaching hospital I have an intern and an attending physician. The attendings have been rotating based on the day I’m in the office. At our last appointment, we requested to have a consistent attending going forward. I really like the doctors we saw on Friday and they assured us that they would be the two responsible for my care from here on out.
No one can say with certainty when it is time to do the transplant. It is mainly up to how I feel. The doctors are OK with me traveling for my west coast book tour events, but put the kabash on any long term out of town trips.
They believe that when my creatinine gets above 5 it will be time to think about scheduling surgery.
I am extremely blessed that we have a living donor. We will be able to do the transplant when my body says that it needs it. Am I looking forward to that? I’m not sure.
The positives are that I will probably feel way better. I’ve hit some sort of new normal. It’s hard to remember how I used to feel. After the transplant I’ll have more kidney function than I did when I was 15. That’s amazing! I’ll also feel like life can finally move on. Waiting for your body to give out is a very odd space to be in. Part of me is ready to get the show on the road.
Of course the downsides are surgery, hospital stay, lots of lab and doctor’s appointments and a lifetime regimen of immunosuppressive drugs which increases the risk of infection and certain cancers. Doing the transplant also starts the clock again on needing a 2nd transplant. Living donor kidneys average 15 – 20 years which means I will find myself in kidney failure again. Although maybe 20 years down the road I’ll finally be able to grow my own new kidney. Here’s to hoping!
Wow, this is a long post…thanks for hanging in there with me.
When I was interviewing Sandra Joseph (chapter 8 in Chronic Resilience), she said that the book isn’t interesting because I’m a certified life coach the book is interesting because I cope with illness. She’s right. Chronic Resilience is obviously something I use every day.
I have thought several times over the weekend about what I’ve written in the book. I have reminded myself to focus on what is in my control. To be present with what’s going on today. To not spend hours freaking myself out with Google searches. To enjoy the health that I still have. To cuddle my dogs and my husband. To find gratitude, even in the middle of this failure. Chronic Resilience is a practice; something I do over and over again.
It really is quite entertaining to see how life whimsically plays out sometimes. Kidney failure on the exact same day as my book publishes. Sometimes you just have to laugh.