My Journey with Chronic Kidney Disease (CKD), Renal Failure and Dialysis
It’s just a cold
My story began in December of 2006. It’s a piece of my life’s history I will regret for as long as I live. I developed a sore throat. Thinking I might have strep throat, I made a doctor’s appointment. During the next 6 weeks, I made two additional appointments. Each time I was only able to see the nurse practitioner. On every visit, I asked for a strep test, and on every visit my request was denied. More interested in my weight, the nurse practitioner repeatedly told me it was just a bad cold.
In August of 2007, I was diagnosed with very early IgA Nephropathy. My Nephrologist believes the untreated strep migrated to my kidneys and caused the IgA. For 13 years we’ve worked to slow the progression of the disease and keep me out of renal failure.
Covid
In March of 2020, I became extremely ill and never felt right again. Just 5 months later in August 2020, I learned that Covid ravaged my kidneys and I was in renal failure. By December of 2020, I began peritoneal dialysis.
Dialysis
The only way to treat my renal failure was either dialysis or a kidney transplant. So, for the next two years, the Peritonal Dialysis (PD) worked perfectly. Then I found an umbilical hernia. The repair required I come off PD. So, in November of 2022, I had a chest catheter placed for hemodialysis. In early December 2022, I underwent surgery for the hernia repair and immediately started in-center hemodialysis.
2023 quickly became of blur of multiple surgeries resulting from issues with the new PD catheter. Repeated infections, a leaking catheter, and one that wouldn’t stay in place all resulted in repeated surgeries. Peppered in between these surgeries was chest catheter replacements and in-center hemodialysis.
By August of 2023, I experience my 9th and 10th surgery removing my PD catheter and placing yet another chest catheter. I returned for a short stent of in-center hemodialysis (HD) but signed up to train and transition to home hemodialysis (HHD).
My nephrologist wanted me to wait six months to give my abdomen a rest before trying PD again. So, when 2024 rolled around I was looking forward to trying PD again.
Posterior Reversible Encephalopathy Syndrome (PRES)
On January 2, 2024, my life was once again turned upside down. While preparing for an HHD treatment I suffered a seizure. My daughter was home and called 911. Long story short, I suffered from an episode of PRES (Posterior Reversible Encephalopathy Syndrome). Only the swelling on my brain wasn’t posterior. Thankfully, it was reversible. I lost two days to being completely sedated (to the point of intubation) waking up to discover I was completely paralyzed.
I spent the next nine days in the ICU receiving dialysis for my renal failure while I fought to get better. Each day a little more feeling returned to my limbs and by the time I left the hospital for an acute rehab center I’d regained nearly full use of my arms. However, I still couldn’t walk. I spent the next fifteen days working 3 hours a day with an occupational and physical therapist learning how to walk again.
Just when I thought things were finally getting better, I contracted COVID-19 (for the 3rd time) and ended up flat on my back again. I left the rehab on the 26th of January and returned to the hospital just a week later with a collapsed lung. I spent four additional days in the hospital. Then they drained the fluid and sent me home. That was a new kind of hell to experience.
It took me another two months for me to stop walking with a cane and only now (it’s September 4th) do I feel like I did before January.
Transplant
I am currently deactivated from the transplant list, due to the multiple issues I’ve suffered. Much to my anger and frustration the transplant hospital is requiring that one of ‘their’ neurologists clear me, despite twice receiving clearance from an outside neurologist. Once cleared, I must complete my yearly transplant testing. Plus, I have to lose some of the weight I gained. Then I can be re-approved. Thankfully, my time spent on the transplant list continues to accrue, despite being inactive. So, once I’m active again, I’ll be higher on the list and closer to getting my transplant.
WANT TO FIND OUT MORE ABOUT CHRONIC KIDNEY DISEASE (CKD), RENAL FAILURE AND DIALYSIS?
Check out these links