Phillip and I were back for my 3 month checkup yesterday. I completed blood work on Tuesday and felt calm about where I was at. I’ve had some fatigue, but nothing dramatic. Life was moving along as life does so I assumed my kidney was following suit.
During my January appointment, my function was at 20%, the prior appointment it was at 17%. While the graph line would go up, we were told to look at the trend over time: the indication was stable, not improvement.
Yesterday we found out that I have 15% kidney function, anything less would be kidney failure. It seems that our January excitement was a blip. The trend line is indeed headed south, as expected.
Chronic kidney disease is progressive. While you can slow the progression with diet, stress management and medication, the prognosis is always the same. We are exactly where statistics and research would place us.
I say “we” because even though it is my kidney, Phillip sits in the exam room chair next to me. And I could not be more grateful for that. The support I have is such an incredible blessing.
I think the intern that had to deliver the news to me was not that experienced at giving this type of news. He kept saying, “it’s just a number…we look at symptoms…it’s just a number.” I could see this cushioned delivery being helpful if I was visibly upset, but we calmly looked at the screen with the lab results and nodded along.
It is true, it is just a number, we will wait and watch for symptoms to develop before any KRT (kidney replacement therapy) becomes necessary.
The amazing thing is that my body is handling the decrease exceptionally well. While there were two dark spots on the creatinine and GFR lines (measures of kidney function), the rest of my lab values looked great. I was able to keep my potassium under control which had been a prior concern, and my hemoglobin is low indicating mild anemia, but not low enough to be concerned about or treat for. I believe my lifestyle has been a big contributor to my lack of symptoms and ability to resiliently handle these changes.
Aftermath
I haven’t cried which is my usual response to a decrease like this. I’m a big fan of crying; it helps release tension and allows stressful emotions to pass through, but my body hasn’t needed to go there. If it does, than I will.
I continue to feel calm about our ability to handle these next steps. I feel supported by my doctors, my family and even my dogs who made sure to give lots of kisses when I got home.
That said, my chin is having a stressful unsightly reaction to the news which called for extra cover-up this morning.
I did have a hard time falling asleep last night. I usually flop exhausted into bed and am out within minutes, but I tossed a bit. My biggest concern was for my eventual donor.
We are fairly far down the living donor path. I have been graced with some amazing generosity. I found myself worried about what the donor with be going through. I don’t know how to ever possibly thank them enough. The slide in my numbers has implications not just for me but also for someone I love, someone who I want to see healthy and thrive. It’s not just that I’ll need surgery, and be in pain, and need to recover, but I’m going to ask someone else to do the same. That is the part of this that’s sticking with me right now.
The Plan
When you get rough health news it is easy, effortless and completely expected to focus on everything that is not in your control. Worries can easily swell into overwhelming fears about complications, side effects, symptoms, what-if’s, and the list can go on for days if not months. Our minds are great at this stuff.
Rather than allow myself to get twisted in that endless cycle (as I’ve done before), I choose to focus on what is in my control, and fortunately there are a number of things. After the doctor went over the lab values, we got down to discussing the plan.
They are going to re-contact the transplant center and let them know what my latest lab readings are. I was going for checkups every 3 months, I’ll now go every other month if not sooner depending on symptoms. We are also going to cut my lisinopril dosage in half. This was helping with blood pressure control and proteinurea, but it is also harder for my kidney to process at this level of function and my blood pressure has been rather stable.
There are things I can do too:
- Meet with the transplant specialist and discuss finalizing transplant plans (meeting set for Monday)
- Take my medication as prescribed
- Continue to follow a healthy vegan diet
- Manage stress to keep my blood pressure stable
- Stay active
By having a plan and focusing on what is in my control, my mind is less likely to drift into worrisome territory. We will get there when we get there. We are currently doing everything we can to create the best possible outcome.
The doctors believe I have more miles left in my kidney and that symptoms won’t become bothersome until I am between 5 and 10% function…which is completely amazing by the way. Kidneys are incredible organs.
The Treat
After every medical appointment I treat myself to something. Just like a kiddo with a lollypop, I allow myself some day-brighteners after seeing the doctor. This time was twofold: a vegan brownie which I split with Phillip and a bouquet of roses from our yard to cheer-up my office.
