My kidney disease was found incidentally during a hospital admission for anaphylaxis.
The physicians noticed my kidney disease during a hospital admission for anaphylaxis due to my MCAS (mast cell activation syndrome). It was one of those scenarios that I had come to dread. Dropping blood pressure, feeling of doom, flushing, itching and if I did not use my EpiPens fast enough, I’d lose consciousness. Often, I’d have biphasic anaphylaxis, which is a recurrence of anaphylaxis after treatment with epinephrine, without exposure to an allergen. This always caused an inpatient admission.
It was January 2013. Experiencing right-sided pain, I asked for some medication to alleviate it. I assumed it was muscle pain from my EDS (Ehlers Danlos syndrome). My very astute hospitalist did not agree and sent me for a renal ultrasound. The ultrasound showed I had severe hydronephrosis (swelling of the kidney due to a buildup of urine).
More tests did not reveal the reason. No ureter blockage visible, but they put in a stent to try to drain the urine into my bladder. I did not tolerate the stent. My kidney had minimal functioning at this point.
I continued to experience anaphylaxis about every 2 weeks over the next 2 months, without known cause. My immunologist discussed with my urologist about the potential of the kidney inflammation causing the anaphylaxis, so they collectively decided it was best to remove my right kidney. The photo is me in the recovery room after the surgery, March 13, 2013. I wish I could say that this stopped all my anaphylaxis, but it did not.
For the next few years, I required an ultrasound of my left kidney to monitored. The kidney kidney blood tests, BUN and creatinine, remained elevated. Now in 2023, 10 years later, I am a CKD patient, chronic kidney disease, grade 3b. Frustratingly, no definitive cause was ever found for either the hydronephrosis or elevated kidney function tests.
For now, I must be careful about all medications that I take, eat a lower protein diet that is mostly plant based and closely monitor my kidney function. As you will see soon, I think all these diagnoses are connected. The chicken or the egg? Which one caused the other? To learn more about CKD, visit
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