Itchy! Shaky! Puffy!*

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Transplant Day Sixteen
November 27, 2019

An endearing Physician’s Assistant, Melanie, listened carefully to my symptoms, complaints, concerns and pains, taking very seriously every snippet of information I gave her. She responded with a well thought out remedy for each of my concerns. She was thorough in explaining how we would address every problem and she did so with humor and compassion. Melanie was obviously highly trained and impeccably qualified to treat transplant patients. She had many years of experience and could explain every symptom and prescribe a plan to address it. Her encouragement that the unpleasantness would pass over time was a boost to my courage. Her gift to me was increased patience and a renewal of my hope.

At the end of our session, Melanie offered a summary of the visit, a very descriptive, professional and astute summary. “You’re just having a rough patch right now,” she said, “Itchy, shaky and puffy!”

All of a sudden, I knew her words would be the title of my next blog post. “Itchy, shaky and puffy!” Perfect! Simple descriptive words — not just sterile clinical jargon — but extremely real and true. And that’s what my family and friends want most to know. What are you really feeling?

The truth is that, from the transplant itself, I am recovering well, and now with very little pain. But the effects of my high-powered immunosuppressant medications are playing havoc on my body and all its systems.

Itchy — enough to keep me awake through the night.

Shaky — along with weakness makes it hard to walk and even feed myself.

Puffy — I can’t even describe the pressure in my legs that feels like a balloon about to burst. Two times their normal size is not an exaggeration!

There you have it — a very real, true and human description of how I am faring post transplant. It is pure grace to be able to counter the simple description of my ailments with the simple words of encouragement from the Gospel of Luke:

Are not five sparrows sold for two pennies? Yet not one of them is forgotten in God’s sight. But even the hairs of your head are all counted. Do not be afraid; you are of more value than many sparrows.

— Luke 12:6-7 New Revised Standard Version (NRSV)

When all is said and done, I am beginning to believe that I really will emerge from this transplant with a stronger faith and an everlasting hope, having learned how to trust God more fully and know in my heart of God’s healing mercies. Most of all, I want to get past this transplant with words of praise to God on my lips, like the Psalmist, declaring that my mourning has turned to dancing:

Hear, O Lord, and have mercy on me;
Lord, be my helper!”
You have turned for me my mourning into dancing;
You have put off my sackcloth and clothed me with gladness,
To the end that my glory may sing praise to You and not be silent.
O Lord my God, I will give thanks to You forever.

— From Psalm 30


* With thanks to Melanie.

A Million Seconds

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Transplant Day Twelve
November 23, 2019

I have just reached a milestone — a million seconds. My kidney transplant started the clock on Tuesday, November 12, 2019. Today it is a million seconds later. I will remember those million seconds as a time of fear and faith, laughter and tears, rest and painful sleeplessness. I will remember a million seconds filled with hard things, the pain of a large incision spreading halfway across my abdomen, and swallowing pills, lots of pills.

I may one day see those million seconds as hidden secrets, secrets hidden from me by pain and by my body’s struggle to regain some normalcy. I may in time look at those million seconds with glittering eyes and see them as the magic they were. But today I can just share with you what I experienced in a million seconds that began on a Tuesday — November 12th to be exact.

I will remember a million seconds of so many strange things happening to my body and the numerous assaults my body endured. I will remember a million seconds of awe in knowing that a kidney was removed from a living donor at Mayo Clinic in Rochester, Minnesota and hand carried by a doctor to me, to Mayo Clinic in Jacksonville, Florida — a  distance of 1,115 miles “as the crow flies.”

I will remember a million seconds that began when my surgeon took a picture of the kidney, brought the photo on her phone to my room to show it to me, and said, “This is a beautiful, perfect kidney for you.” She planted that kidney, tucked it carefully inside me, took a photo of the incision and about five hours later came to my room to show me a picture she took on her iPhone of a large incision, impeccably sutured.

I will not forget those million seconds of the prayers of my friends, doctors and nurses caring for me and family members hovering over me with concern and relief.

I will not forget the hymn that came to my mind in the long, sleepless nights in the hospital — a million seconds of leaning on God’s everlasting arms.

What have I to dread, what have I to fear,
Leaning on the everlasting arms?
I have blessed peace with my Lord so near,
Leaning on the everlasting arms.

Leaning, leaning,
Safe and secure from all alarms;
Leaning, leaning,
Leaning on the everlasting arms.

A million seconds have changed my life, while all the while, I was leaning on the everlasting arms. It was a million seconds of holy ground, sacred space. Yet I hardly noticed it as magic or miracle as the pain of my humanity took center stage.

Yes, I focused on suffering, physical pain, worry, concern, tears. Instead, I might have focused on the hidden secrets and witnessed the miracle of holy ground inside a hospital room. I could have had a million seconds of miracle, but instead I experienced a million seconds of the raw and real humanity of suffering. In some ways, a million seconds of transformation were lost to me as I invited unfaith into my room.

And by the way, a million seconds is 12 days.

An Ever Present Help on Troubled Days

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Transplant Day Six
November 18, 2019

Today Is a troubled day for me. I need to know God as “my ever present help in time of trouble” on this day of  kidney transplant aftercare that began early this morning. Being in the Mayo Clinic lab by 6:30 is not so gentle a way to treat a person with a huge, painful incision! On the way to Mayo Clinic, bumps and potholes in the road caused sharp pain. Walking the hallways at Mayo Clinic required far more energy than I currently have. I am weak and shaky, struggling with significant pain, and suffering from the side effects of very potent medications.

The medical visits will end around 2:00 pm today. We hoped to be able to rest until the next medical appointments on Wednesday. But the transplant doctors need to repeat my blood tests early tomorrow. They made some significant changes to my medications to try to address some concerns they have about my kidney function, excessive incision pain, blood sugar and fluid retention.

It occurred to me today, that in some ways, all of the inflexible after surgery care and the daunting medication regimen seems as if it is not at all about me; it’s about the kidney! It’s all about the kidney!

I can live with that if I can remember that God cares for me, for every part of me, and of course, for the new kidney. But my hope rests on the grace-giving God who also cares for the whole of me — what’s going on with me physically, emotionally and spiritually.

A comforting hymn text about God’s care has lifted me up into hope at various times in my life. “Day by Day, and with Each Passing Moment” was written by a young Swedish woman, Carolina Sandell Berg. Like the Psalmist, Berg learned early in life to trust in God’s strength to help her overcome times of suffering. She learned that when pain and tragedy strike, God may use that experience to deepen our faith.

When Carolina was 26-years old, she experienced a tragedy which profoundly affected her life. As she and her father crossed a Swedish lake, the ship suddenly lurched, and before her eyes, her father was thrown overboard and drowned. Like the Psalmist who gave us a strong affirmation with these words, “God is my refuge, an ever present help in time of trouble,” Carolina Berg found hope in God day by day. 

Although my present situation is very different from her tragedy, I am learning all over again about how hope and faith work for me. This is my paraphrase of Carolina Sandell Berg’s wonderful hymn:

Day by day and with each passing moment,
Strength I find to meet my trials here;
Trusting in God’s kind and wise bestowment,
I’ve no cause for worry or for fear.

God whose heart is kind beyond all measure
Gives unto each day what She deems best —
Lovingly, it’s part of pain and pleasure,
Mingling toil with peace and rest.

Every day the God of love is near me
With a special mercy for each hour;
All my cares God’s love will bear, and cheer me,
God whose name is Counselor and Power.

The protection of God’s child and treasure
Is a charge that on Herself She laid;
“As thy days, thy strength shall be in measure,”
This the pledge to me She made.

Help me then in every tribulation
So to trust Thy promises, O Lord,
That I lose not faith’s sweet consolation
Offered me within Thy holy Word.

Help me, Lord, when toil and trouble meeting,
Ever take, as from a mother’s hand,
One by one, the days, the moments fleeting,
‘Till I reach the promised land.

On days like this one when I feel weary and weak, when I experience pain and need an extra measure of compassionate care, I know I can look to God who is “my ever present help in time of trouble.” And I know that God, who is both father and mother to me, will walk beside me day by day, every day, through every passing moment.

 

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On another note, please pray for me as I recover from my kidney transplant at Mayo Clinic in Jacksonville, Florida. I am so grateful that you are walking with me on this journey that often felt so frightening and is now a very difficult recovery. Your thoughts and prayers mean so much. Your donations through the Georgia Transplant Foundation have helped us get very close to our goal. The Foundation will match donations dollar for dollar up to $10,000, and you have already helped us raise $9,015. If you are able, please help us get to the $10,000 matched amount. We are almost there. If you can contribute or if you would like to read more of the story of my illness, please visit the Georgia Transplant Foundation’s website at this link:

://client.gatransplant.org/goto/KathyMFindley

“Go Fund Me” page is also set up for contributions to help with the enormous costs related to the transplant, including medications, housing costs for the month we have to stay near the transplant center, uncovered medications and medical equipment, and other unforeseeable costs for my care following the transplant. If you can, please be a part of my transplant journey by making a contribution at this link

https://bit.ly/33KXZOj

Surrounded by Love

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“Surrounded by Love” —  A watercolor by Kathy Manis Findley

On May 17th, I received some devastating news from Piedmont Transplant Center in Atlanta where I had been four years on the transplant list for a kidney. They abruptly placed me on the inactive list, which meant they would no longer be working to match a kidney for me. I was devastated. My friend told me recently that she feared I would give up on the process, but instead she watched me gather up my courage and move forward.

There’s a reason for that, something that empowered me to find another route on the journey that would eventually lead to a transplant. The reason? I call it surrounded by love and all that goes with that kind of love. I found it, I think, at a meeting of Baptist women ministers held at my house on May 17th. After the news from Piedmont, the last thing I felt like doing was hosting a gathering. But they came, a group of women I didn’t really know so well. One of them was a close and trusted friend. The others were friends I needed to know better.

As we enjoyed on another’s company, I avoided talking about my disheartening news, but eventually someone asked about my progress toward a transplant. I could have responded by sobbing uncontrollably. I could have simply said that the process toward a transplant is ongoing. Instead I took a deep breath and gave them the details.

Now you must know that each one of them is a trained and gifted minister, so they knew what to say and how to say it. But the end of the conversation caught me completely off guard. Everyone stood and they created a huddle with me in the middle. It was a hugging huddle — one big, comforting hug. Those moments were comforting, empowering, encouraging, full of grace. My friends mothered me and then they prayed for me, each one.

In those moments I was surrounded by love that has grown deeper with the passing days. From that huddle I was graced with the will to go on, and I did. On November 15, if all goes well, I am scheduled for a transplant at Jacksonville’s Mayo Clinic.

All because I was surrounded by love, a love that I know will not let me go.

Numb!

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Numb! It’s not a very emotive feeling like other emotions. It seems so much more appropriate to feel ecstatic, elated, overjoyed — or even terrified — at receiving the call from Mayo Clinic saying a kidney is available and the transplant is scheduled for November 15th. But numb is all I can get to right now. After all, this is a very tangible way of announcing an end to five years of illness, uncertainty and dialysis. Five years does not seem like such a long time, but it feels in some ways like a lifetime.

So in the immortal words of Pink Floyd, “I have become comfortably numb.” It’s not such a bad way to feel. The journey has been a long one, an emotional one, and now I think it’s time for calm. Numb is actually pretty darn calm, and after traveling this wild and fantastic journey, numb is okay. There’s something about numb that feels like serenity.

So many people have walked alongside me on this journey and, at times, carried me when I could barely take the next step. No one — and I really mean no one — could have been as dedicated and loving a caregiver as Fred. He is forever faithful as he has always been. 

And oh, my friends, my friends nearby and far away from many lives past to this very day! Thinking of them just now and knowing how faithfully and deeply they have prayed for me brings tears to my eyes. I am grateful for extended family who cared for me and Fred enough to urge us to Georgia. They have supported us in so many ways.

No person could have had a more dedicated and caring staff of dialysis professionals as I have had. They have missed nothing, not a change in a blood test, not the signs of an infection, nothing! And they are the ones who have kept me healthy enough to get to today.

My friend who is donating a kidney on my behalf is living a life of selflessness, giving a very precious gift of immeasurable value. I think of him today with such unfettered gratitude.

God’s grace and protection have been near, so near at times that I felt a palpable sense of the holy — within me, surrounding me, above me and below me, behind and before me guiding me on the unknown path.

As I said at the very beginning, I am numb, and although numb is acceptable and appropriate right now, numb is not such a good crucible for words. So I have no more words right now. Except this good word:

I thank my God every time I remember you, constantly praying with joy in every one of my prayers for all of you . . .

— Philippians 1:3-4 (NRSV)


For all that has been — Thanks.        
For all that shall be —Yes!

― Dag Hammarskjöld

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