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Putting a Face to a Name

First, let me update you on how I am feeling.  On Thursday, I wasn’t feeling much but happiness:  happy that the operation was over, happy that I had visitors, happy that the kidney was working in its new home, happy that Craig helped me push the pain medicine button every six minutes.  By Friday, the nursing staff reminded me that I had to get out of bed.  With the help of my friend Julie and sister Kathleen, I was able to get up, walk three steps and then make it back to bed.  The faces of my friends and family were a welcome distraction from the pain and discomfort.  I received gifts from the hospital and transplant team.  Two of my favorites are the kidney shaped lap pillow and a “Donate for Life” flag that is now flying beneath our American flag on our flagpole at home. 

Friday evening, we were very surprised when my donor advocate informed us that the recipient and her family wanted to meet us.  As part of the meeting, the hospital had their PR staff present and we were all interviewed by the Cincinnati Enquirer.  With cameras clicking, amidst a room full of family and the transplant team, the recipient and I were able to meet face to face.  It was an emotional moment for all of us.  The recipient, her sisters and her parents kept repeating, “Thank you!”  I felt overwhelmed by the attention, but relieved to know that it was worth it.  The recipient gave me a beautiful orchid that is now on the mantle of my fireplace at home.

Saturday morning I was given my discharge orders, and they began pulling the tubes out of different places on my body.  Before I left, I wanted to say goodbye to the recipient.  With Craig and Kathleen’s encouragement, I was able to walk to the recipient’s room (instead of using a wheelchair).   It was nice to talk to her in a less hectic setting–the only other people present were Craig, Kathleen, and her mother.  We exchanged some stories, along with our addresses and phone numbers.  She asked me to send her a picture of my children.  She said to me that she couldn’t understand why I would do this since I get nothing out of it.  Now that I am at home, I will have plenty of time to reflect on how this has changed my life for the better–I will be writing a letter to the recipient to share all that I have received.

Relief and happiness

The feelings when we woke up this morning at 4:30 a.m. and the feelings we have now roughly 12 hours later couldn’t be more different.  Amy was very anxious this morning, to say the least.  On our way over to the hospital, she wanted me to remind her that this is a common procedure and that everything was going to be fine.  I reminded her that everything was going to fine, and to remember that this act was going to give another person at least 20 years of health.  As she was taken back to the operating room, she was frightened and scared.  It was hard to see her that way. 

Around noon I was able to see her in the operating recovery room.  One of the first things she said was, “I am so happy.”  She is in pain, but as we got word that the recipient was doing fine, I could see more relief and happiness in Amy’s face. 

Amy started us on this journey roughly 4 months ago–a journey that I was not fully ready to take on.  As this day grew closer, and now has passed, I am so grateful for my wife (and lover and best friend).  I am honored to be by her side–always.

Home Mass

Craig and I thought it would be wonderful to celebrate mass at our home with our friends and family before surgery.  It turned out to be more wonderful than we imagined.  Fr. Tim Howe, from St. X was the celebrant in our living room.  April, a friend of mine made the bread and the wine was a bottle my sister Barb had brought.  Emma played the piano and my friends did the readings.    My friend Sue did a reflection after communion.  I asked her permission to post it on the blog and she said she didn’t mind.  Her words are so insightful and beautiful:

Who can imagine where or how the Holy Spirit will move?

Or to whom the spirit will come?

Or that seed the Spirit longs to plan in a willing soul?

Does the Spirit look for welcoming hearts or does she keep dropping seeds hoping some will take root?

These questions came to mind when I talked to Amy about reflecting on “Listening to God’s call and saying Yes to it”.  for, surely, all of the listening and answering is the work of the Holy Spirit whose job, it seems is to take us into mystery and wonder.

Perhaps the Spirit’s true work is all about the incredible ongoing love story of God’s longing for redemption of this world.

I think of Mary.

A visit by an angel in a garden.  Her “Yes” brings an overshadowing by the Holy Spirit, the planting of a wonderous seed and the early beginning of our redemption.

Saul of Tarsus, knocked off his horse and blinded.  Only the Spirit knows if there was any welcome in Paul’s heart.  But Paul said “Yes” and the good news of redemption was proclaimed to the likes of us.

Mary Magdalene, weeping at the tomb, filled with grief, yet so faithful in her love for Jesus. Surely it was the Holy Spirit who opened her soul to hear Jesus speak her name.  And it was she who delivered the first word of redemption to the apostles. 

And imagine this!  The Holy Spirit even used  few-sentence-blurb in a church bulletin, of  all things!  A seed was planted in a young woman’s heart and the Holy Spirit took hold.  Only the Sprit knows how God is fulfilling his purpose for redemption in xxxxxx and Amy. 

And the most amazing thing is that God continues his redemptive love using us, with all of our “stuff”- our talents and gifts, our weaknesses and faults, worries and fears.

- The Blessed Mother’s youth and simplicity

-Paul’s stormy temper and “thorn in the side”

-Mary Magdalene’s grief and faithfulness

-And in my own life, an ordinary infertile couple finds themselves parenting eight children, ages 30 to two seven-year olds.  A tribute to the Spirit’s wicked sense of humor!

Saying “yes” to the Spirit can take you places you would never have imagined, nor ever knew you wanted to go.  But this is always the Spirit’s work, and we are just lucky to be along for the ride.

Mother Katherine Drexel speaks of this- “I look up and wonder at all of God’s wonderful ways-and I think to myself, what would happen to a desire that God implants on the heart; if we listen and act on that desire?

Amy, it is our great fortune to be with you on this journey.  We love you!

Thank you to everyone who came and celebrated with us.

Update!

My time before surgery seems to be divided between stocking the refrigerator, making sure Valentines are done,  learning more graphic details about the surgery and squeezing in every second I can with my friends and family.

I am in a group of women from our parish called Christ Renews His Parish.  Together we attended and then planned a retreat over the course of a year.  The stories of their lives have touched me  and I have learned from their wisdom.  Last week, they planned a prayer service for me.  They invited our pastor to come.  He anointed me as part of the service. ( Yes, that’s right… I had my last rights!)  After the anointing, each of the women laid their hands on me and prayed.  Before it was over, they presented me with a beautiful quilt.  Each woman had made a square.  They even invited Fr. Dave and my little girls to contribute a square.  I promised to take it to the hospital with me, so I would be wrapped in their love.

A few days later, some of my dearest friends organized a get-together over coffee and lunch.  They offered help with cooking meals, taking care of the girls and promised to visit me at the hospital. I enjoyed their company and found great comfort knowing that they are there for me. 

Yesterday, I traveled back to the transplant clinic for my pre-op visit.  The first person I saw when I walked through the door was the recipient.  I have never seen her before, not even a photograph, but I knew it was her.  She looked so young and sick.  She was wearing a mask over her nose and mouth.  I was behind her in line at the registration desk.  When I stepped forward for my turn, I saw her name on the sheet.  It was an overwhelming feeling.  Once I finally sat down to wait for my blood draw, I began to cry.  I realized that seeing her, will remind me of my purpose when I am feeling overwhelmed and scared.  Now I saw it with my own eyes- a young woman is so sick that she needs my kidney to live. 

During my pre-op visit, everyone made efforts to keep us separated.  She shared with the surgical team that she doesn’t know if she wants to meet me and doesn’t want to decide until she is healed and healthy.  On surgery day, our families and friends will be in separate waiting rooms to prevent chance encounters.  I know parts of this are difficult to understand, but then so is living with a chronic disease and being forced to rely on the kindness of strangers to restore your health.

During the day, I spoke with the transplant coordinator, donor advocate, nephrologist, surgeons and anesthesiologist.  Some of it was comforting, other parts unsettling.  Bad news first:  I found out that my scars will be bigger than I anticipated.   One surgeon described reaching his hand into the 3 inch incision to remove the kidney.  He told me that since I was small, it will be slightly more difficult and I would experience internal bruising when he moves my other organs out-of-the-way.  I wasn’t surprised when he said it could be quite painful.  I will have a “pain ball”  that will have catheters pumping pain medicine directly into my incisions.  They will also supply me with a patient controlled pain pump with morphine (this should be in the good news section!)  The surgeons emphatically stressed my restrictions.  I cannot do anything that engages my abdominal muscles for six weeks.  I replied, “That’s everything!”    To which he said, “I know.”   No lifting anything heavier than a gallon of milk and no exercise more strenuous than walking 2.5 mph.  He explained that I will be stitched  from the inside out and every time I strain my abs, the layers of stitches get weaker.  This could allow part of my intestines to squeeze through a weak spot in the stitches- a hernia.  Surgery would be required to fix this.  So, I will try my best to be a good patient, knowing that it will not be easy.

So for the good part of the day- Craig and I were able to meet with the surgeon who will be operating on the recipient.   He explained to me that she should live with my kidney for 20 years.  If she were to receive a cadaver kidney, she would only expect to get 10 years.  Because I stepped forward when I did, she was able to avoid dialysis for a long period of time, which would shorten her life expectancy.  He assured me that I am doing  a good thing, that she is lucky to have my kidney and that it will enable her to give back to others in her own life.  I felt comforted and reassured after I talked with him.  I found out later that he is a liver transplant recipient. 

So, I have to be at the hospital at 5:30 Thurs morning.  I go into surgery at 7:30.  My kidney should be out by 11:15 and I’ll be in recovery by 12:30.  Easy enough, right?

Time seems to be slowing down, now that surgery is one week from tomorrow.  Why, then can’t I find enough time to get everything done in time before surgery?

My friend Sue gave me a copy of one of her favorite books for Christmas.  She put a marker on a special passage for me.  The book is My Grandfather’s Blessings by Rachel Naomi Remen.   Here is the passage:

In the Mishna Torah, Maimonides, the great doctor rabbi, describes the eight levels of “charity,” or ways of giving to others.  This was one of the many traditional teachings that my grandfather and I discussed and puzzled over.  At the time, he was an Orthodox rabbi, a lifelong student of the Talmud, and I was five years old.  When a text was as subtle and complex as this, he would simplify all of it but its most basic wisdom.  Here is the way he told it to me. 
 
At the eighth and most basic level of giving to others, a man begrudgingly buys a coat for a shivering man who has asked him for help, gives it to him in the presence of witnesses, and waits to be thanked.
 
At the seventh level, a man does this same thing without waiting to be asked for help.
 
At the sixth level, a man does this same thing openheartedly without waiting to be asked for help.
 
At the fifth level, a man openheartedly gives a coat that he has bought to another but does so in private. 
 
At the fourth level, a man openheartedly and privately gives his own coat to another, rather than a coat that he has bought.
 
At the third level, a man openheartedly gives his own coat to another who does not know who has given him this gift.  But the man himself knows the person who is indebted to him. 
 
At the second level, he openheartedly gives his own coat to another and has no idea who has received it.  But the man who receives it knows to whom he is indebted.
 
And finally, on the first and purest level of giving to others, a man openheartedly gives his own coat away without knowing who will receive it, and he who receives it does not know who has given it to him.  Then giving becomes a nautral expression of the goodness in us, and we give as simply as flowers breathe out their perfume. 
 
At the time, it was very important to me to be good and to do things right, and I listened to this description very carefully.  “I will only do it the right way, Grandpa,” I assured him.  He began to laugh.  “Ah, Neshume-le,” he said to me tenderly.  “Here we have a special sort of thing.  Suppose we all gave to those around us as the first man does, begrudgingly offering a coat we have bought in the presence of witnesses to someone who has need and who asks us for help?  If we all did this, would there be more suffering or less suffering in the world than there is now?”
 
I thought for a long time, the need to do it right battling in me with the simplicity of my grandfather’s question.  “Less suffering, Grandpa,” I said finally in some confusion.  “Ah yes,” he said, beaming, “this is true.  Some things have so much goodness in them that they are worth doing any way that you can.”
 
Unquestionably there are ways of giving that may diminish others, striping them of their dignity and self-worth.  We can learn how to give without taking something away, and often we may learn as we go.  But according to my grandfather, it is better to bless life badly than not to bless it at all.  
 

Though most of the reactions to my choice have been overwhelmingly positive,  some people have been less than supportive.  It has led me to reflect on why people are distrustful of altruistic acts.  Certainly, kidney donation has a unique bodily aspect.  As humans, we want to preserve and maintain the wholeness and integrity of our bodies.  I have also come to believe that people can be distrustful of selflessness.  We have become so conditioned to believe that we are selfish creatures and are motivated by things to improve our own lives.  Therefore, altruism must be a twisted form of something else.  It can look like altruism, but must be selfishness in another form.  I obviously don’t personally believe this, but I have first-hand experience that others believe this to be true.

So, when people are less supportive than I hoped they would be and question my motives, I make an effort not to take it personally.  I have learned that altruistic kidney donation challenges people on their own personal beliefs.  Now when I need to, I remind myself of the part of the passage from the book that Sue gave me that says:  “Some things have so much goodness in them that they are worth doing any way that you can.”

A Date is Set..Finally

Well, it has certainly been awhile since I posted.  Things have not gone as I expected.  When I last posted, I expected that surgery would be Jan. 7.  I was surprised when my transplant coordinator called and said the recipient would prefer to have surgery late February.  Late Feb didn’t work for me, so we began our offer/counter-offer process.  I found out this afternoon that we have an agreed upon date…. Thursday, February 4. 

I am so thrilled that we finally have a date on the books.  Though I have had doubts over the past few weeks, I feel more committed than ever.  I know some friends and family continue to have concerns, so I thought I would throw out a few facts I have learned on this journey.

Every day, 16 to 18 people die while waiting for a transplant of a vital organ, such as a heart, liver, kidney, pancreas, lung or bone marrow.

 The need for organ donors is astonishing:

  • More than 100,000 men, women and children currently need life-saving organ transplants.
  • Every 11 minutes another name is added to the national organ transplant waiting list.
  • Experts suggest that each of us could save or help as many as 50 people by being an organ and tissue donor.

At University Hospital, there are 200 people waiting for a kidney.  The average wait is 7 years.

Your second kidney is not a backup for your first kidney. If something goes wrong, whether you have one kidney or two, you’re about to have zero, because they nearly always live or die as a system.

With two kidneys, a healthy person has 3 to 4 times the renal function s/he needs. With one kidney, you still have more than you need. You are not forever weakened by donating a kidney.

A small percentage of people are born with one kidney. Most never know.

The testing process is very comprehensive.  If I was not healthier than the average person, the doctors will not let me donate my kidney.

It doesn’t cost  me anything. The transplant center assigned me a coordinator and social worker who help with the details. The recipient’s insurance will pay my medical costs .   Strangely enough, I do have to pay for all pain medication prescriptions once I leave the hospital.  There are state and federal tax credits for living donors that have lost wages.  

Many long-range studies have been done that show on average, kidney donors have a longer life expectancy than non-kidney donors.   

My surgery will be laparoscopic.  I will have 3 small hole-incisions on my belly and a 3 inch incision on my groin, where they actually remove the kidney.  The physician I met with assured me that no one will see it when I have on a swimsuit!

Thank you again to everyone who has offered me words of support and encouragement.

The Ripple Effect

I am so overwhelmed by the love and support I have received from people.   I cried a few times on Wednesday.  How did I get so lucky to have such amazing people in my life?  It made me realize the power of  love.  How many times have I failed to write a note or make a phone call to tell someone how I felt about them?  Too many.  I am so thankful to my childhood friend, friends of my sister, and friends of my Mom.   Some of them know my shortcomings and still love me. There isn’t anything better!

Yes, donating my kidney to a stranger is a “large” act and it has brought about strong reactons-like a boulder in a lake.  Wednesday, I realized how smaller acts of love, your kind comments and emails, have the same effect-  pebbles in a lake.  It inspired me to be more mindful of letting the people in my life know how much they mean to me- to throw more pebbles.

So, this ripple effect has allowed my story to spill over into two other blogs.  One of them is a friend of my Mom’s who beautifully wrote about my story:  http://www.expandyourlifenow.com/ .  

The Courage To Give

Posted in November 13, 2009 ¬ 7:00 amh.JeaneneNo Comments »

A while back I wrote about having the courage to stand up for what we believe.  Often, in the face of battle or strong disagreement from others, that becomes very difficult for us in the modern world.  Many circumstances also present themselves for us to not only have courage, but have empathy and be able to give totally of ourselves.

The daughter of a dear friend of mine is donating one of her healthy kidneys to a stranger.  I know that kidney donation is somewhat common among family members.  Finding a match is usually easier that way.  But this woman simply read about someone in need and was hit with the desire to help her.

After much testing, she discovered that she was a “‘perfect” match.  How wonderful is that?  How likely is that to happen?  Shall we call in the Law of Atttraction/Intention?  Was the recipient willing this into her life so much that when my friend’s daughter read the information in her local parish newsletter she had no choice except to respond?  Perhaps the fates knew that she was the ideal donor and put the courage and selflessness into her to have her move forward.  Or maybe God was speaking to her here and letting her know that He would be present.

You choose what you believe.  But no matter your beliefs, in January, someone is getting a new kidney – the gift of life.  My friend’s daughter will be inconvenienced with some time to recuperate and her body will learn to function with just one kidney.  But in the end, two people will have grown greatly in this process.  They will have learned about giving and receiving selflessly from each other.  And those around them will also experience a new meaning of loving your neighbor.

I have been given permission to share this story with you.  You may or may not be interested in reading the journey, but if you are, you can do so here.  I know you will be inspired.  You might also want to visit The National Kidney Foundation and Living Donors Online!

The other is a husband of one my dear friends that wrote two beautiful prayers.  I printed them out and have them next to my bed.  

A Prayer for a Woman Donating Her Kidney – October 27, 2009

2009 October 28

Dear Family and Friends,

Please take a moment to pray with us.

Father,

I know of a young woman named Amy who has been in the process of discerning whether or not she should donate one of her kidneys to another person.  This has been an emotionally trying experience for her.  Many of her loved ones have a natural fear of this, and hope that she will not proceed along this path.  Yet, she believes that this act is not of her volition, but Yours. 

A Prayer for a Woman Donating Her Kidney

Lord, I believe that
You are the Source of all inspiration.
Your gentle whispers
Rest easy on our minds.
Help us heed the call
That comes from You,
A seed planted in our hearts,
Nourished with Your love,
Grows until the idea
And the Love which inspired it
Are merged,
So that neither exists
As a separate entity.
Protect and defend
The idea and the love in Amy’s heart.
Give her wisdom
To discern Your will.
Give her courage
To act upon Your will.
Give her love
To follow in Your footsteps.
In Jesus’ name.
Amen. 

 Peace,

Tom

 

October 30, 2009

Dear Family and Friends,

Please take a moment to pray with us.

Father,

I have had some words and phrases rumbling around in my brain this week.  I think they were an outgrowth of a prayer I had written for Amy who is undergoing tests to determine the possibility of her donating a kidney. 

A Prayer on Love

There is only one emotion.
     The emotion is Love.
There is only one action.
     The action is Love.
There is only one thought.
     The thought is Love.
There is only one treasure.
     The treasure is Love.
There is only one idea.
     The idea is Love.
There is only one breath.
     The breath is Love.
There is only one moment.
     The moment is Love.
There is only one way of life.
     The way of life is Love.
There is only one God.
     God is Love.

Peace,

Tom

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