My Story That I Call "Maisha"

Is this really happening? No way! Yes, way…because here I am in the O.R. about to be put to sleep. Anesthetic medication is already making its way through the IV, and a mask is covering my nose and mouth. I don’t see it, but I know there’s a kidney somewhere in this room…or nearby… about to be transplanted into my abdomen. But how did I get here?

I was diagnosed with sarcoidosis (an auto immune disease) in 1989 which was treated with prednisone for 13 months. The disease is not curable, but it went into remission. And since then, I had absolutely no further problem with it…or so I thought. Over the years that followed, I was diagnosed with high calcium levels which my then (now former) PCP was “watching” and with what she casually referred to as “renal insufficiency.” At the time, I didn’t know how serious “renal insufficiency” was or could become; and, so, I wasn’t concerned about it because my PCP didn’t appear to be concerned about it. But I began to do some research, becoming familiar with creatinine and eGFR. And when I saw these numbers take a serious hit, and my PCP failed to mention these significant changes to me, I self-referred to a nephrologist at the Cleveland Clinic (which is not the hospital where my PCP practiced). But I decided to go to the Cleveland Clinic because of their expertise.

The nephrologist informed me that the sarcoidosis and high calcium levels caused kidney damage and progressively deteriorating kidney function. I had not connected the sarcoid and hypercalcemia with the deteriorating kidney function. It was my nephrologist that made the connection.
Like I said, I thought that when my sarcoid went into remission, I was done with it…that I was “home free.” Well, I never had any flare ups since then, but the damage to my kidneys had already started and continued to progress. When I began seeing the nephrologist, my CKD was already at level 3b. The downward progression was a long, slow process and I was able to maintain level 4 CKD for several years. But as the situation got worse, the “d” word started popping up…finding its way into conversations with my nephrologist during my appointments. I had a dialysis nurse assigned to me, and I was sent to a dialysis center for education purposes and to decide what type of dialysis I wanted.

What kind of dialysis I wanted???? I didn’t want any kind of dialysis!

Then, in April of last year, my nephrologist said she wanted to recommend me for a kidney transplant. What??? I had NEVER considered transplant…at least not for me. Don’t get me wrong…I thought transplants were great. I had been a caregiver and support for a heart transplant patient years earlier and had also been one of the chaplains for in-patients on the Transplant Floor at Cleveland Clinic. So, I was familiar with transplants. Who would have thought back then, though, that I would end up in one of those beds on the Transplant Floor!

But fast forward to 2023…who was going to give ME a kidney transplant? I thought: I’m too old and I have a ton of comorbidities. I just knew that when they saw my age and health record that that would be the end of that! But it wasn’t…

The Transplant Center contacted me and arranged for me to have a battery of diagnostic tests, labs, and interviews two months later, in June. And lo and behold, at the conclusion of all their evaluations, they informed me that they were submitting my information to the Selection Committee. Of course, my presumption was that the committee would stamp my file: DENIED! But they didn’t…

On July 31st my pre-transplant coordinator called me and told me that I was accepted. What???... Me???... Wow…I was “Listed!”
OK, I figured it didn’t matter anyway because it could take up to 5 years (or more) to get a kidney. Well, it didn’t…

On August 26th I got a call from Transplant: they had a kidney for me…less than 1 month after being listed. Unfortunately, as they continued to check the kidney they decided it wasn’t the best match for me. So, no kidney that day. I told you I wouldn’t get one!

But wait…on November 1st at 4:41am my phone rang. It was Transplant. They had another kidney. They told me that when they get a kidney, they call a few candidates in case they can’t get in touch with one, or in case another turns down the kidney, or they won’t be able to get to the hospital in time. I was number two in line for that kidney, but the number one in line got it. So, no kidney that day either.

Somebody once said: “The third time is the charm.” Well, that turned out to be true for me because on November 28th I got a third call from Transplant…and I was number one in line for this one.

So, on the morning of November 29th, 2023…after 34 years of deteriorating kidney function…despite my age…and despite my health history… after just under 4 months on “the List”…without even asking about or seeking to have a transplant…here I am in the O.R. about to get a kidney.

I had a successful transplant. The kidney worked “right out the box.” My fear was that it would take time – days, weeks, months, maybe never …for the kidney to wake up, and I’d end up on dialysis anyway…even if only temporarily. My surgery was a robot-assisted kidney transplant which involves a few tiny incisions in the abdomen. Because of that, healing was quick. And from the time that I was transferred to my room after surgery...to this day...I have not had any pain associated with the transplant and, so, have not needed nor taken any pain medication. I was up and walking around my hospital floor the day after the transplant, and I was discharged to go home on December 2nd, just two days after the transplant…and two days before my birthday. What a great birthday present I received!

I am now 11 months post transplant and I'm feeling great and doing well. My Transplant Team is very pleased with my progress and my labs. My transplant was what they call preemptive…meaning that I was transplanted before ever going on dialysis. And, so, you know how very grateful and elated I am over that answer to my prayer. My adopted kidney, which I named Maisha (which means “life”) is working well and taking good care of me…and I’m doing my best to take care of it.

This has been an incredible journey. What I thought would never happen… happened. The transplant has been a blessing to me, and I consider myself blessed. And I’m oh so grateful to God, to my donor, to my donor’s family, to the Cleveland Clinic Transplant Team, and to my family and friends who supported me…and are still supporting me through this ongoing journey. And, of course, I’m grateful to Maisha. 😊❤️