In Decemtber, 2020, I wrote a post entitled, “The Journey” in which I told the story of my kidney disease, transplant and folllow-up. This is the continuation and update to that post.
It has been 2 years since my transplant. At the time of the operation, Doctors told us that there was a 50-80% chance that this insipid disease could return and attack the new Kidney. Although it usually reoccurs within 7 months if it comes back, I was a little luckier that’s most. It took 2 years!
A few weeks ago, I was feeling “off” and lab test numbers started going in the wrong direction. After some prodding, I was admitted to Jackson Memorial Hospital last Monday for further tests including an invasive biopsy. The first news came back that I was in a moderate Kidney rejection stage…possibly treatable. The next day it was discovered through further tests that the PGNMID -Progressive Glomerulonephritis with Monoclonal Deposits - had also returned. Although I always tried to discount the possibility that the disease would return and look at the situation from a positive point of view, I was not destined to be the lucky one…you would think that since I can seem to never get a winning ticket in the Powerball lottery, I might be able to get one in the lottery of life!
So, after spending the week in the hospital receiving 2 initial infusion treatments for the rejection, we are back in Miami this morning receiving the 3rd infusion at the out patient clinic. Each infusion takes 6-7 hours to complete. Other than some nausea, my body seems to be taking it okay. However, The additional meds I am taking are a different matter. Lots of steroids, no sleep, muscle weakness, shakes etc are no fun, but something to endure while, hopefully, the high intensity doses of anti-rejection drugs try to do their job.
Next on the docket is to figure out how to treat the PGNMID. With my nephrologist, Marc Richards, the team of Doctors at Jackson Memorial/Miami Transplant Institute and advice from Dr. Nelson Yeung at Mayo Clinic, ideas on how to proceed are being formulated. Unfortunately there is very little known about this rare disease and no set protocol on how to treat it. To answer the obvious question, given this disease, I’ve been told that a return to the transplant list is a no go. I had my one shot and am not eligible for another kidney.
In all honesty, it is hard to stay optimistic when the odds seem to be stacked the other way. However, I’ve been known to draw an inside straight and have the winning ticket on the long shot at the right time. (too many gambling metaphors?). Maybe I can get lucky again!?!
So, getting well again is my only priority now. With the help of my family (especially Connie!), the encouragement of my friends and colleagues, the smiling voices of our children and grandchildren and a lot of determination, we carry forward. I will keep you posted as things progress, but don’t be afraid to reach out…if I am not feeling like talking and am behaving too much like a curmudgeon, I just don’t answer!
I am NOT looking for sympathy. To say, “I’m sorry” is not needed. However, if you are so inclined, prayers, good wishes and hopefulness are always welcome.
You are ALL a part of Roy’s Journey and I am so happy to have you along for the trip!
And The Journey continues………..
