Kidney Removal with RA
On September 30, 2021, I had an item published titled The Maestro. Hey, it was a good piece about getting ready for surgery.
I wrote in "The Maestro" that I would update the community when I knew how things turned out. This piece is that update.
The onset of kidney pain
What occurred is that my left kidney atrophied many years ago, but it was discovered 5 years ago. At the time, my urologist and I decided to leave things until I started having pain due to leaving it in place.
This summer, my back and my side started hurting more than usual. It was a gradual onset. At first, everything was bearable, but over time it hurt increasingly. So, I opted for and scheduled surgery.
Preparing for before and after surgery
I had all the checks. We discussed how I should use methotrexate leading up to the surgery. When could I resume my biologic? When did I need to stop and start DMARDS? It was the typical list of concerns. Anyone who uses these powerful medications knows the routine, and yes, I complied with each restriction and request.
All was going well. I knew I would be in the hospital overnight, so that meant I had to check with the hospitalist to inform him of my medical status and coordinate care during that 24-hour post-surgery period.
The emotional loss of an organ
The surgeon did not address the emotional loss of a kidney. I know that sounds crazy - why would I be emotionally tied to a body part that was no longer working? Yet, I was.
The anxiety occurred because I have long-term diabetes, and I saw my Mom (who also had type 1 diabetes) suffer from the devastation of kidney disease in the last years of her life.
I had been off my biologic for so long or maybe it was the mounting pain, but every single, tiny thing impacted me at a deep level. I know in my head that the kidney had stopped working long ago, and I knew it was of no use to me or anyone else. What I could not wrap my mind around was the loss of an organ.
Fear of kidney issues with diabetes
As a person with diabetes (PWD), long-term kidney issues have frightened me for 47 years. My Mom, also a PWD, lost kidney function and had to live with dialysis during the last years of her life.
Dialysis is less intrusive today than it was in 1986 when my mother died at age 48. Still, watching my mother die as she did from multiple body systems failures had me worried about my prospects. Those complications caused me to hate diabetes even before I was diagnosed.
The kidney was already long gone
Of the host of diabetes complications that a person can have, I fear kidney disease the most. Yet here I was, in 2021, having a kidney removed. There was something awful about voluntarily agreeing to have it removed.
I discussed the situation briefly with my cardiologist when I told her that I would be having surgery earlier in the summer. She advised that I should not think of this as losing a kidney because that kidney is already long gone. She told me that all I was doing is eliminating a future issue. Indeed, it made sense. Yet, it made no sense at all.
RA and kidney disease
Rheumatoid arthritis is a factor in long-term renal failure though it is unclear why. A pivotal study found that "the prevalence of [kidney disease] indicators in RA patients is common."1
Though the cause is not precisely clear, it appears that chronic kidney disease is less a comorbidity of RA itself and more an outcome of medication misuse and the presence of other disease factors like diabetes.1
The cause of kidney disease largely remains a mystery
However, 1 factor studied was the use of biologic medications and the incidence of chronic kidney disease (CKD). The good news is that:2
Biologic agent administration was independently associated with lower risk of incident CKD and progressive Estimated Glomerular Filtration Rate (eGFR) decline.
In other words, in this study of over 25,000 veterans, the incidence of kidney issues declined by as much as 25 percent for people who used biologics over what was seen in RA patients not using biologic treatments.2
It is assumed, then, that the cause may lie with other factors or medications. Frankly, the causes of increased kidney disease in people with RA remain a mystery.
The decision to have kidney removal surgery
I decided to have the kidney removed despite my hesitancy, but I am still apprehensive about the future. It is one thing to think about taking medications when you have 2 kidneys.
When I noticed the pain in my side, I was told that the kidney was functioning around 15 percent; when it was removed, it was working less than 15 percent.
The parachute was comforting
My cardiologist was right, that kidney was merely taking up space, and since it hurt, it had to be removed.
But somehow, I cannot forget the awful fate of my Mom and how I am haunted by the fact that I am now operating without a parachute, even if my former parachute had a big hole in it. At least it was a parachute.
What strategy to fight fatigue is most effective for you?