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

Mine Is a Lonely Road

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Into the Blue, Painting by db Waterman

Mine is a lonely road on a journey of one. 
To be sure, I have a dear, dear life partner
And a family
Friends all over the world.

Yet, I am making this journey all by myself.

All around me, friends are working, vacationing, writing, preaching

All those things I long to do 
Simple things, but out of my reach.

In the meantime, I am dialyzing for hours every day
Willing myself to eat less, much less
Focusing on healthy 
Exercising through pain

And waiting for a kidney transplant.

Friends are still working, vacationing, writing, preaching
All those things I long to do, still out of my reach.

Waiting for an organ transplant is lonely.

No one I know is doing the same thing.
But everyone knows someone who had one
And died
Or did poorly
Or maybe they even did great
But I never hear much about them.

Waiting for an organ transplant is lonely.

I cannot help but second-guess myself
Why the risk?
Hard decision.

A Good decision about a dangerous thing takes time
Maybe years
Info rattles around in your head for a while
Moves on as it discerns the rhythm of your spirit
Then listens for the whisper of God
And at last finds its rest in your heart

And then you know.

Friends are still working, vacationing, writing, preaching
All those things out of my reach.

They stop their busyness long enough to give me counsel
Everyone knows someone who had a transplant
And died
Or did poorly

And so they tell me that
With all the medical details they know
And mostly they don’t know

But I am holding the good decision in my heart
The right decision 
The one with all the risks
Just like life
Full of risks.

Mine is a lonely road.

But I am ennobled to move forward in good hope
My mustard seed faith is enough
I leave them in the dust
All those who are working, vacationing, writing, preaching
All those things out of my reach.

I  leave them in the dust
All those who knew someone who had a transplant
And died.

Because I am not moving toward death.
I am moving toward life
And light.

Alone.

Still lonely.

Determined to persevere
Until the road ends.

Who will move this mountain?

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Who will move this mountain? I’m referring to the high, steep mountain that includes hundreds of processes that might eventually (possibly, probably) lead to a kidney transplant for me. So which is it, I keep asking myself? Is a kidney transplant possible? Is it probable? Is it a done deal?

I know with pretty much certainty that having a kidney transplant is never a done deal. The possibility of a kidney transplant for anyone is always tenuous. The possibility of having a donor is even more tenuous. I keep repeating the description offered by Piedmont transplant nephrologist, Dr. Christina Klein: “99% of people who call with interest in donating are screened out by phone and 50% of the people who do the full-day evaluation are screened out.” With deep gratitude, I can say that the person who has offered to be my living donor has passed through both of these screenings and has been accepted as a donor. It is no small thing for a living donor and a recipient to both be determined healthy enough for a transplant.

Piedmont Transplant Institute personnel spent the day yesterday testing me to determine if I’m still healthy enough for a transplant. They do a re-evaluation every two years for persons on the transplant list. It was probably the last re-evaluation I will have before a transplant surgery date is determined.

I said all of that to say that, as always, I think of God as the one who moves these kinds of obstacle mountains. I am standing at the base of a pretty big one this time, looking up at the peak and whispering to myself, “Impossible!”

But that’s not the end of the story, is it? For me, the story aways ends with sacred words that remind me who has the control, who it is that can move this mountain. Sacred words about moving life’s mountains can be found in all three Synoptic Gospels — Matthew, Luke and Mark. The Gospel writers make multiple references that go to the question of who moves mountains, as told by Jesus in parable. Interestingly, Jesus never says, “God will move your mountain.” Instead the words of Jesus in the parables go something like this:

If you had faith even as small as a tiny mustard seed, you could say to this mountain, ‘Move!’ and it would go far away. Nothing would be impossible to you.

— Mark 17:20 (TLB)

What? Can this be true? That God does not move the mountain after all. That it has everything to do with faith, even my very small mustard-seed-like faith. Is it true that I am my own mountain mover? That nothing is impossible?

In reading this Scripture text that is so familiar, it seems that perhaps I am the one who can say to this mountain, “Move!” Without stretching this Gospel text beyond its original intent, I can affirm that its message is about faith, and that message is timeless. It can begin as a thought that Jesus expresses in parable and end up as a reality of faith that empowers my life and quickens my journey.

So stand with me at the bottom of this mountain. Look up at the mountain with me and pray that my mustard-seed faith will get me to the peak. I may very well receive the gift of a kidney transplant. It seems very possible at this point in my five-year journey. But whatever happens, my faith will be with me — sustaining me, guiding me, empowering me still for every future mountain that raises up before me.

For this faith that was born in me decades ago, thanks be to God.

 

 

 

One Step Past Possible

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All journeys begin with one step, just one step, usually into the unknown. Each step that follows goes farther into a journey that most often is made up of twists and turns and sometimes stones in the road. It takes a little faith, embarking on a journey.

Still, faith does not make things easy. But faith does makes them possible. Mildred McAfee says something very wise about moving forward in faith. She says “If you have a great ambition, take as big a step as possible in the direction of fulfilling it. The step may only be a tiny one, but trust that it may be the largest one possible for now.”

Tiny steps remind me of the book microShifts by Gary Jansen who suggests that transforming your life happens one small step at a time. The book’s message makes it quite acceptable to take micro shifts toward something in your life. As for me, microshifts are important. I have made dozens of microshifts to get comfortable with the idea of a kidney transplant.

Microshifts are still shifts, and that means change that we sometimes fear. Faith slips in on us at this point. There’s a tiny verse in the Gospel of Luke that those of us who are followers of Christ grab onto. We believe the message because we want to. We hold the message close to our hearts because we need to. 

For with God nothing shall be impossible.

That’s it. Luke 1:37. Simple and clear. Without superfluous language, Luke asserts that nothing is impossible. And about the “with God” part. Well, I’m guessing that Luke adds that to remind us that faith includes a contract between us and the God of the possible. 

So I am thinking today about what is really is possible, globally and personally. For instance, is it possible to end hate-motivated violence? It is possible to end racial divides? Is it possible to make sure schools are safe places? Is it possible to protect the earth from the effects of climate change? Is it possible for this nation to hold free, fair, respectful political campaigns and elections?

Global questions like those are endless — so many questions, so few answers.

But then I also ask what is possible on a personal level. What’s possible for me or you? Is it possible to live out our faith on the margins where hurt prevails? Is it possible to carve out time for contemplation, meditation and prayer?

And then there’s the question I often ask myself. Is it possible to envision a day of better health? I am thinking specifically about a kidney transplant. Right now, a transplant seems to be one step past possible, meaning that it’s just a little more than possible that it will happen. The possibility , however small, brings up feelings, emotions that have begun to escape from the place inside me that had them locked up. 

I finally believe that a kidney transplant for me is probably going to happen. The stars have aligned. A brave and magnanimous donor has been evaluated by Piedmont Transplant Institute  in Atlanta where both donor and recipient (me) will have the surgery. The National Kidney Registry will search for matches among paired exchange program participants. Even surgery dates are being contemplated. It’s real! After almost five years of wondering, and doubting a transplant would ever happen, a transplant is imminent.

It would not be an exaggeration to say that I feel panic and fear. My heart beats a bit faster these days. I am taking lots of deep, cleansing, centering breaths. My heart is preparing for a surgery that could well offer a new sense of freedom for me. By coincidence, blasting through my speakers I am hearing one of my favorite old country tunes, Martina McBride’s “Independence Day.” It is reminding me that I lost a certain amount of independence the day I got sick in 2014.

So today feels a bit like an independence day is coming for me. It feels like independence to think about a future of not being tethered to a dialysis machine for eight hours a day, every day. It feels like independence to not have permanent tubing emerging from my body. It feels like independence to be able to travel without the strain of taking large medical equipment and multiple boxes of dialysis supplies.

As with anything medical, things can go wrong. There are numerous disqualifying factors that could still preclude a kidney transplant. But right now, living donor and recipient are fully evaluated and the transplant is at least one step past possible. This is a good place to be.