A Life Milestone

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I’m pretty sure it’s not cool to get emotional about having a medical evaluation. But I did. I passed a life milestone yesterday when I completed my week long medical evaluation at Mayo Clinic in Jacksonville, Florida. Getting to an actual kidney transplant is a long journey, five years, ten years, people wait even longer.

I arrived exhausted and holding on to a fair amount of cynicism, barely able to believe that I might actually get a kidney transplant some day. As is my custom, I have trusted God along the way for the best outcome for me, most of the time. But five years of dialysis — every single day for eight hours a day — can wear down one’s hope. Five years of waiting on a transplant list with thousands of other waiters can test one’s faith. 

About a month ago, I had a very bad experience with my first transplant center. It took me to a very low place of feeling that I had been devalued by the caregivers who had known me for almost four years. I was on the transplant list, but there was virtually no communication with me during those years. And just as we were about to turn a corner with a transplant actually in view, they abruptly took me off of the active transplant list. It became very clear that the process with this particular transplant center would probably not lead to a transplant for me anytime soon. I was emotionally devastated, but more importantly, I no longer felt comfortable placing my life in their hands. So I gathered up all my emotional baggage and took it with me to Mayo Clinic. I did not expect what happened to me there. 

We turned in to the Mayo campus on a road framed with lush, spreading trees. Palm trees were interspersed among the large trees and plants covered the ground. The landscape was made even more beautiful by a large pond with a fountain sending water into the air. It reminded me of the Living Water that quenches our thirst forever. I looked up and saw the words, “Mayo Clinic” and suddenly felt a sense of being home, of being in a place with people who would care for me. A silent tear slid down my face and I felt very full, the lump in my throat extending into my chest.

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The week was full of appointments and medical tests, beginning with the transplant nephrologist, Dr. Mai, who is one of the most compassionate and personable physicians I have ever met. He took a complete history, examined me thoroughly and answered ever question we had. 

 

I must say that every single employee at Mayo Clinic was professional, pleasant and kind. It was an atmosphere of caring and compassion. It was a busy place that never felt rushed. They pulled off a “medical miracle” of a sorts, scheduling about thirty appointments for me and never being off schedule for even one of them. 0DDE1816-F2F2-491F-9AFA-ADD27234EEA7

There are places throughout the buildings to stop and rest, many of them filled with the sounds of soothing classical music. It is a place that values art, which you will find in every nook and cranny. And then there is the atrium for meditation, a space closed off from the rest of the clinic. When you enter, a large flowing fountain makes the only sound you will hear. In that silent place, the lighting is dimmed and there are comfortable places to sit. A beautiful altar-like table draws your focus.

After the full week of tests, scans, blood draws and consultations, we were back with Dr. Mai who patiently explained every test result. He was encouraging about the kidney transplant and said more than once that I needed a transplant as soon as possible. “But what do I know?” he said. “I’m just a regular doctor. The surgeon is the one who will tell us if a transplant is possible.”E9B0C9D8-E46A-40EA-A66E-B0117A8E3D14

Then we moved to our very last appointment with the transplant surgeon, the one who would hold my fate in her hands. I feared this last appointment and worried about it throughout the week. The surgeon would have the last word. 

How delighted we were to meet Dr. Perry, a rather young woman who obviously knew her craft. She looked over all the scans and examined the potential site of the incision. After a lengthy Q & A, she sent us on our way. She had the final word, the last words of the week. “Let’s get you a kidney!” she said enthusiastically, and all the hope I thought I had lost rose up inside me. AE0AB32B-2F0E-4485-9F88-D2EC33057A80

When we drove away, I felt incredibly sad to be leaving that caring place. The lump in my throat came back and I was filled with gratitude, confident that God had chosen Mayo Clinic to help me take back my life.34233289-31E0-49AE-9D02-0D6B98DC5AD7

A Horribly Wonderful Year

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Art in foreground: “Horribly Wonderful” from The Land of Froud by Brian Froud, 1976.

Celebrating a five-year anniversary can be a fine excuse for a party! Definitely a five-year milestone can offer a chance to revisit and recall memories. My five-year anniversary is tonight, the night a phone call from my doctor ordered me to get to the ER. It was the night we learned that my kidneys had failed, just like that, out of nowhere, no notice. It was the night that end stage kidney disease turned my world upside down. It was the night that was the advent of a full year of hospital stays, biopsies, surgeries, physical and occupational therapy, loads of questions, very few answers and most of all, a very concerned and fatigued husband.

Fred was my rock, as he has always been. He slept next to me in that horrible excuse for a family bed. He kept vigil at the hospital day and night. When I was able to persuade him to go home to get some rest, he answered my phone calls in the middle of the night when I was sleepless, frightened or lonely.

“Are you up?” I would ask.

“I am now!” 

I don’t really think this anniversary calls for a party, but it does call for some reminiscing and remembering. So last night, Fred and I recalled the year I was so ill, that horribly wonderful year. Interestingly, we have two separate and differing sets of memories. He tells me that, most of that year, I was not aware of much, to the point of not even recognizing him. He tells me that I almost died during three separate critical events.

On my end, I remember none of that. I did lose time in that year, with confusion about losing days, even weeks, when I was unresponsive. I endured hundreds of needle sticks, maybe thousands since I am told my veins had collapsed. I received a port for hemodialysis that promptly caused me to nearly die of sepsis. I had a kidney biopsy that developed a painful bleed. I ate terrible food most of the time. I spent a lot of time in therapy learning to walk, write, identify colors and place square blocks in round holes.

Together we remember the love and care of my church, the family that constantly clamored for updates, the handful of good friends that were present, the food that the church brought to us every single week, and the nurses, angels in disguise.

I must say that, even to this day, I miss the sweet nurses that cared for me with great compassion. They were ever-present when I needed help and, during those long nights, they would often come in with a popsicle, sugar-free of course!

A final memory for today’s blog is the soft, fluffy afghan that my dear friend, Rev. Donna Rountree, brought me from her church. The Disciples of Christ church where my friend served as pastor barely knew me. I had preached there once. The congregation prayed for me, over the afghan, during a church service. Then Donna brought the afghan to the hospital, placed it on me, and told me that it was covered with the prayers of the people. What a special gift! What a special grace!

07CC221A-DFBC-4372-8E66-854CA41B0296When I think of that year, my description of it is “horribly wonderful.” Wonderful because, in the worst of times, God breaks in through the grace of a devoted husband, a caring family, an attentive nurse, a gentle phlebotomist, a close friend, a skilled physical therapist, a loving church family. 

So, yes, I took from that horrible year some wonderful memories, and that is what I can celebrate at this five-year milestone. And what’s more, I am here, still on this side of heaven and grateful for better health and life-saving dialysis. Pure grace!

Thanks be to God.