Life Interrupted

It has been awhile since my last Blog Post.  

Sometimes, life has a way of being interrupted and what was formerly routine becomes hard to realize.  Since you follow me on Roy's Journey, I thought I would update you on what is going on with me!

As you all know, I had a kidney transplant in October of 2020 after having been diagnosed with a rare kidney disease in 2019.  At that time, I was informed that if the disease invaded the new kidney, I would not be eligible for a 2nd transplant.  Two and a half years later, the disease did, in fact, invade the new kidney.  But after 8 weeks of chemo treatments, we halted the progression of the disease.

This past Fall, the disease was back and we repeated the 8 weeks of Rituximab.  However, this time, it did not stop the disease and I slowly have gone into total kidney failure.  On January 31st, I was rushed to the emergency room with several problems.  The flu, an UTI, a massive ulcer in my digestive tract, an infection in the transplanted kidney, and I ultimately contracted sepsis in the hospital.  Sepsis is a life threatening medical emergency caused by the body's extreme, overactive response to an infection, which damages its own tissues and organs.  It occurs when an infection triggers a chain reaction throughout the body, potentially leading to widespread inflammation, organ failure, septic shock and death.

However, after 14 nights in the hospital I was able to come home...much weakened but thankful to the Doctors and Nurses, my Connie, Lisa and Brad that saw me through this nightmare.  With a port for dialysis installed in my chest and neck, I began the new routine of 3 days a week dialysis.  A week or two later, my heart decided to go back into afib and I was again admitted to the hospital.  After shocking the heart back into rhythm, I was discharged after 5 nights.

I am now home and continue to go for dialysis 3 mornings a week and am working with a PT a couple of days a week to regain some of the strength lost after 19 days laying in a hospital bed.  This is the new normal for me...but I am ready to move forward and adjust my life to accommodate the reality.

I want to thank all of those that have been by my side during this bump in the road.  First, my partner in everything, Connie, who has been by my side throughout this journey.  Lisa and Brad, who stayed by me in the hospital and even stole a wheelchair to get me out of the Rehab facility I refused to stay in.  My brothers and sisters-in-law who check up on me often, and my close friends, who have brought dinners, visited and continuously check on me and are the real heroes in this Journey.  Without others support, this Journey would be much more difficult.  I cannot say Thank You enough!

So, where do we go from here?  I have accepted the fact that dialysis is now part of my life.  Unlike the peritoneal dialysis I was on prior to the transplant where I was hooked up to a machine for 8 hours every night at home, I have opted for Hemo Dialysis, whereby I go to a facility 3 mornings a week.  The fistula in my arm is maturing and once it is ready, the fistula will provide easier access for dialysis and I can have the port in my chest/neck removed.  By opting for hemo dialysis, we can still travel...dialysis is available from many dialysis centers throughout the world.  

I am not looking for sympathy.  I consider myself lucky...I am still here, feisty as ever and ready to take on the world!

And The Journey Continues.....