Response to NPR Story with inspiration from an Indiana Astronaut

Morning Edition, from National Public Radio (NPR,) did a story July 2, 2012 on the consequences of Living Kidney Donation.  I hope that it will encourage research by potential donors, yet I am concerned that it may frighten them from considering Living Kidney donation as a viable choice.  Knowledge really is power.  Hopefully they won’t stop their research at the headline.

I agree, with those interviewed for the story, that more focus needs to be given to Living Kidney Donors post surgery.  Although my experience has been quite good (with multiple blood tests and UAs at prescribed intervals,) I would have appreciated more one-on-one emotional follow-up about 6-9 months after the surgery.  That’s when my energy levels returned, but small worries about life ahead with one kidney began.  Although it was never enough to make me second guess my decision, it created questions for which I had no answers.  Teams dedicated to helping Transplant recipients should also have knowledge about what it is like for Transplant Donors after the surgery.  Real people need real answers.  Advocating for more Donor care and increased Donor follow-up is essential and laudable. 

Back to the risks: Even with a pure and giving heart, a healthy body, and an amazingly competent surgical transplant team, a donor can die when donating a kidney.  Speaking as a Living Kidney Donor, I knew that going in and gave it all of the consideration that I felt something of the magnitude merited, ultimately deciding that it was a risk that I was willing to take.

I recently went to a lecture given by Indiana Astronaut, Dr. David Wolf.  He spoke at the Economic Club of Indianapolis.  At one point during his speech, he answered a question about what he felt minutes before he was ready to launch into space.  I cannot give you a direct quote, since I was mesmerized by his entire speech, but I will tell you what I remember most because I feel like I can relate. 

Dr. Wolf said, “once he and the other astronauts go through 3-4 hours to get into their suits and another several hours to get strapped in, that’s when his thoughts turn to what might happen.”  Within that quiet nothingness before a life changing event, we start to look at the big picture.  Here is what he mentioned as three potential outcomes: “he could be sitting at home watching television later that night (because the launch was delayed,)  he could be dead (because something catastrophic happened,) or he could successfully launch into space to do his mission and return home at its conclusion—safe and sound. 

Although I am not an astronaut, or a soldier, or any brave sole toiling daily in harm’s way, I held my husband’s hand minutes before they wheeled me into the surgical suite feeling many of the same things Dr. Wolf discussed.  They could postpone the surgery, I could die…or my Dad could die, or we could both come through the surgeries with flying colors and move into a life filled with health and more time together.  So, I made my peace with God knowing that whatever the outcome, I was certain that I was doing the right thing.

But there is one thing that neither Dr. Wolf nor I discussed.  That’s the knowledge that we would be fundamentally changed by our experiences.  That is true for so many of life’s choices…good and bad.  There are health consequences for all astronauts.  Bone loss is a real problem for anyone living for prolonged periods in a weightless environment.  For me, I will never take non-steroidal anti-inflammatory drugs or NOT worry about whether my remaining kidney is functioning the way that it should (even though I never gave them a thought when they were both chugging along and doing the quiet business of cleaning my blood.) It’s a small price to pay for so much.

I can’t speak for Dr. Wolf, or any other person for that matter, but I would guess that he would say that it was worth it.  Similar to the last line of the Morning Edition news feature I would say, “Even knowing all that I know now, I would do it all over again.”

http://www.npr.org/blogs/health/2012/07/02/155979681/organ-donation-has-consequences-some-donors-arent-prepared-for

Celebrating One Year

Sipping coffee on the porch of my father’s New Mexican home I am reminded of how precious life is…and how in the blink of an eye it can be thrust over the edge or saved.

A year ago today I donated one sister (of a healthy pair) of kidneys to my Dad.  The surgery itself, on June 9, 2011, was routine and uneventful, but the lasting effects for the both of us have been tremendous.  I hope to elucidate some of them here today.

For my father, his health has never been better.  A smaller bucket of medications has replaced the larger bucket that he took prior to the surgery.  This new regimen has made the post-transplant adjustment feel like a reprieve.  Two-three anti-rejection medications will be his constant companions, yet they seem like a small price to pay for having a healthy kidney to filter the toxins from his body.  Life is certainly less complicated when living organs do the job for which they were intended. 

My health is also as it should be.  My remaining kidney is doing the job of two and my energy level returned to its pre-surgery level about five months following my donation.  Always striving for balance in all things, I am working to return my abdominal muscles and my stamina to my pre-surgery standards.  This is a work in progress, but I feel as though I have made great strides in the last few months.

That leads me to mention all of the things that I have learned this year—and the learning curve was great and often surprising.  I need to break these down into practical matters and emotional ones.

Practical Matters or Practical Things That I Wish I Knew Before Surgery:

1.     Get a good physical therapist to tell you exactly what kind of exercises to do, and have a schedule of when to start doing them after the surgery.  After four months of abdominal crunches, and nothing to show for it, I was given practical and valuable exercises by a licensed physical therapist.  The crunches that I had been faithfully doing were completely inappropriate, unhelpful, and even potentially harmful.  My new isometric exercises isolate many muscle groups within the abdominal wall and strengthen my core without putting undo pressure on sensitive areas.  I finally feel like I’m making progress.  

2.     Scar tissue (elastin and fibrin) is laid down for up to two years after surgery.  Gentle massage and pressure, increasing as the scarred areas heal, along the suture lines, helps immeasurably in creating more flexibility and less sensitivity in these skin areas.  Two years is a long time, but it is worth the effort.

3.     Transplant Teams are invaluable resources for all phases of Living Kidney Donation.

*For me, it has been a struggle to stay in touch with my transplant team since I live thousands of miles away.  Constantly shifting positions, while understandable for a business and for career advancement, are hard on someone who has bonded with the Transplant Team members that got them through a tough time.  Grateful for the continued support of some members at my bedside one year ago, I must admit that it stung every time that new people were put “in charge” of my case.  There are many Team members and each has a dedicated job, so as each new person is assigned, they invariably give me a call and introduce themselves.  When speaking with a new team member (post surgery—social worker) she asked me if I had any issues or wanted to talk about anything.  When I started to explain to her what I was feeling, she cut short the conversation and told me that it was nice to “meet” me and she would call back another day.  She never did. 

*The Transplant Team worked hard to get me ready for my Living Kidney Donation, took exceptional care of me during the entire procedure, and worked to help me figure out what was going on after the surgery.  One incredible human being shone high above the others.  Her name is Chris.  Even though she was no longer “in charge” of me, no matter where she was or what she was doing, she was always available to help with encouraging words or real-time information.  Thank you, thank you, thank you!  I will always be grateful for everything!

Emotional Matters or Why Some Parts of This Were Surprisingly Difficult:

1.     Even with all of my careful preparations, followed by a summer of deliberate rest and relaxation, I didn’t realize that going back to work would be so stressful.  I have been a Montessori Early Childhood Educator for the last seven years and I have loved every minute of my time spent in the classroom.  If teaching children was the only consideration, I would have had no concerns and I would still be doing it.  Alas, other adults run the show outside of the classroom and they have the potential to make the school run smoothly or chaotically.  The latter has been my burden for the last few years and reached almost epic proportions this year. 

Unbeknownst to my conscious self (although constantly sensed by my unconscious self,) my work environment had slowly become toxic.   This meant that when my energy flagged and I fought to regain the stamina that was mine before surgery, I could no longer count on the men and women charged with the daily running of the school to be supportive, helpful, or even kind.  With all emotional and physical support conditional, my self-esteem and health took a hit.  Two months of writing, painting, hiking, gardening, and snuggling with my family seems to have dialed back much of the damage and I look forward to my new career as a full-time writer.

2.     Even goodhearted people, intent on doing nothing more than helping, almost never know how best to help…and they rarely ask.  Sometimes prayers are really all that someone wants.  It’s not a slight and doesn’t mean that offered help is unappreciated.  Time to heal with family is often the best salve.  I am truly blessed to have had so many loving and giving friends and family.  “Thank you” for all that you have done and all that you are can never be said enough.

3.     Some people will blame any personality characteristic that they do not like, or any time that you tell them “No” as proof that donating a kidney has somehow fundamentally changed who you are.  I read the greatest quote posted on Facebook by one of my friends that explains this phenomenon.  It reads: “When someone says, ‘You’ve changed!’ It simply means you’ve stopped living your life their way.”  I could not agree more! 

The people who have been threatened by my ability to establish boundaries have been reacting to my integrity, not any substantive change.  Perhaps the surgery has given me an excuse to be less flexible about those boundaries that matter, but they are the same ones that existed before the surgery…I am just being more vocal in my opposition to their being trampled now.

4.     Everything that happens, both physically and emotionally, cannot be blamed on the life giving Living Kidney Donation.  It is a surgery, one done intentionally and on a healthy individual, but that does not mean that every symptom is related.  Certainly check with the Transplant Team, or your own physician, but then look at what true-life stressors might be contributing.  A major event like this can be life giving for the Recipient and life affirming for the Donor.  Find out what is going on, and then work on a solution.  You may be surprised at where that leads. 

This year has been a tremendous time of healing, health, and personal growth.  Even with some major personal upheaval, I wouldn’t change a thing.  I am healthy, my father is healthy, and we are both stronger because of our challenges and success. 

I fought with myself for weeks over whether to make this a lighthearted blog entry about how amazing it is to be celebrating one year of health with my Dad (which it is,) or to write something substantive that would help someone already on track to give a similar gift.   The decision made for me the minute I decided to write the One Kidney Wonders blog in the first place, I want to help.

If you (or someone you know) are contemplating giving the Gift of Life to a loved one, friend, or colleague, I would urge you to learn as much as you can.  Talk to your family (you will need their constant support,) talk to your physician, and read everything about the subject.  Some of my best information came from reading donor’s personal blogs.  You won’t know everything (that’s not possible,) but perhaps by reading the experiences of others you can understand that the year of healing after the surgery is entirely worth the struggle.

The Healing Continues

There are two things about healing that are giving me trouble these days.  Each has its own identity, yet seems intrinsically linked to the other.   I want to talk about both of them today.

First, healing takes so much longer than one thinks it should.   

My Dad and I had surgery 35 days ago today.  It is hard to believe that so little time has passed.  It feels that it was yesterday and months ago at the same time.  It is times like these that I can see time as an accordion—passing through two points only to truly register the weight at each end.  My time differentials exist in my scars…the healing wounds that show what has transpired.  I can pull up my shirt and see the knitted, thin, red slits on my belly.  Bruises still kiss the laparoscopic wounds, while the nerves that reside on the surface of my skin run hot or cold depending on some whim that I cannot fathom.  Internal electric shocks accompany some tasks, but most of my pain has been gone for a week or more.  What remains is lingering soreness, as if I have done too many exercises.

I feel the weight of the surgery most in my energy.  My energy level feels to be full volume some hours, and others it lags.  I have learned to sit down and grab a book on those occasions, relishing in the remedy of reading.  Other days it is harder to let myself sit and read.  This leads me to my second issue.

I look good.

Writing this sounds ridiculously narcissistic.  I don’t mean that I’m hot, sexy, or some beacon of feminine beauty.  I mean that I look healthy, and rested, and healed.  In fact, I look more rested and happier than I did going into the surgery.  This is why so many friends and family members forget that I have even donated a kidney.

For some, this translates into an expectation that I can begin to do all of the things that I did before.  I admit that I have been in the habit of doing everything for everyone for a great many years.  This has given me an over the top, super-woman reputation.  It is unfounded; I am just a doer.  Doers see a problem, or a task, or a need and seek to fill it.  What we do not often do is take care of ourselves.  That must be why I look so good these days.  I have been taking care of myself.  I hope to remember that.

Lately, guilt has been creeping around the edges of my life.  So I woke up early this Tuesday, drove to the grocery store, went shopping, came home, put the groceries away, cleaned the kitchen, and then made dinner for my family.  Now I have cooked since I have gotten home, but this dinner was prepared from scratch (as I would most nights.)  I also made homemade scones so that we could have Strawberry Shortcakes for dessert.  The kids had the best time whipping the heavy whipping cream.  How could I have begrudged them that little extra?

That evening, and all of the next day I paid for it.  I felt as if someone had sucked all of the life out of my body.  I was wracked with cramps and generally uncomfortable—but mostly exhausted.  In fact, I was almost too exhausted to sleep.

Today, I have recovered a great deal of my energy.  I walked on the treadmill for about 20 minutes and finished a puzzle with my kids.  Taking it easy should be a prescription that I wear on my chest like a badge.  Perhaps it should be printed upside down so that I can read it too.

Gift ‘transcends love’: Reporter-Times.com/MD-Times.com

Gift ‘transcends love’: Reporter-Times.com/MD-Times.com

Hollowness

Last summer, during my first visit to meet with the Transplant Team, my surgeon and I had a frank discussion about a particular phenomenon that affects many Living Kidney Donors.  What we discussed is the body’s gradual realization that a part of the body is missing.  The earnestness that accompanied the Doctor’s proclamations suggested many years of witnessing this phenomenon firsthand and he wanted to ensure that I understood that it could be something that I might experience once the surgery had been completed. 

I thought about this over that last year and gave it even more consideration when he cautioned me again on my final office visit before my return trip to Indiana.   He had checked all of the surgical sites and pleased that they were all healing well he added more to what he had said before.  He explained that the bonding of a parent and child tends to make this “Missing” feeling a bit less.  The farther or more tenuous the connection to the person for whom one had made this sacrifice…the harder that feeling of loss can be.  I completely understood that he was not saying any of this to dissuade anyone from donating.  He was saying this because he believes, as I do, that the more that a person understands going into the surgery—the better the outcome will be.  If I needed any help talking to anyone about this, help would be made available.

I left knowing that the entire Transplant Team takes caring for their donors in the years that follow as seriously as they take following their recipients.

Since that first conversation, I have had this thought running around in the back of my mind.  What will it feel like if my body cannot sense the donated kidney?  Will it mourn the loss? What will that feel like?  How will I react?

Last week I experienced something that must come close to what Dr. Lopez was referring.  I awoke a bit sore…and feeling like there was a stretching space within my back that was not there before.  I got out of bed and caressed the muscles in my back with my hand.  As I walked around my bed I got a sense of as dawning hollowness.  Was this just a symptom of the healing within that space or was my body finally registering that something was gone?

I must say that the sense was neither painful nor mournful—it just was an empty space that was not there previously.  I waited until a more decent hour of the morning and then called my Dad.  The simple act of touching base with him eliminated all sense of hollowness.  Hearing his healthy and happy voice seemed to have filled it in.  I have not had that feeling again.

So how does a potential Living Kidney Donor ward against this?  Should we?  I do not know.  I think that having a tight bond with the recipient must help.  Understanding that you may feel this way at some point during your recovery will help you to know that you are not crazy.  It is just your body waking up and adjusting to a new you.  The better you feel about what you have done—the better your body will recover.  And after all, if you can’t be whole coming out of this then there is no way that you should work to help make someone else whole. 

Living Kidney Donation should not be viewed as a sacrifice.  Sure you will have some painful days during recovery, and I am mindful that having major surgery is absolutely no picnic…but it is not a full sacrifice of self that you are contemplating.  For all Living Kidney Donors, the goal is to give a part of themselves that can be more effectively used by another—therefore prolonging another person’s life without diminishing their own.

It’s about saving the life of the recipient without harming the life of the donor.  If that was not the primary objective, then none of us would do it.

Eating, Hiking, and more

“Oh lately, it’s so quiet in this place…,” croons Damian Kulash Jr., lead singer of OKGo, as I sit at my keyboard attempting to coherently explain the good progress that I have made over the last few days.

I can eat!  I want to eat!  I am eating!  It sounds so ridiculous when I say it like that, but the truth is that having experienced not eating (and not wanting to eat) for enough days to feel quite drained of all energy, I am celebrating the return of hunger, taste, and joy in eating.

Sunday night, as is tradition, we get together with my husband’s father and eat a meal.  This time we dined at my favorite little Mexican restaurant, Los Reyes.  I had my usual Roasted Vegetable Quesadilla and hoped that I would be able to eat it.  It was glorious!  I even ate some chips and salsa.  My spirits soared as my tummy filled.  That night I slept better than I have in months.

The next morning, I woke up feeling so rested that I relented to my children’s urging that we needed to go get some groceries.  Secondarily, they had been asking me to take them to our local big box store because they had both attained accelerated reader honors at the end of the school year for each of their classes.  This generally means a gift certificate and some intense shopping for the appropriate reward.   I had missed their last day of school, since I was in New Mexico, so I was eager to get back into the real Mom mode and do something that I have always done with my kids at the end of the school year.

That was an extremely bad idea.  Our big box store is a super store.  It is too large for me to decide (on my first really good day) to go for a hike.  Carrying only my cell phone and a wallet, I strode into the store flanked by my capable children.   I got a cart and began in the northern acreage of the store.  Half way across the back forty, I began to fade.  It was somewhere in the frozen food section that I contemplated falling on my knees and sobbing.  Deciding that this would really disturb my children, let alone the rest of the shoppers, I rallied myself enough to finish collecting the items on our list.  My kids loaded the groceries as we checked out, they loaded the groceries into the cart, and then they loaded the groceries into the car.  They were awesome!  I could not have gotten out of that store without them.

At home they got all of the items into the house, and then ran to play.  I spent over an hour putting everything away.  Taking frequent breaks and moving one item at a time was doable.  Having OKGo playing in the background made it enjoyable.  Amazing what music can do for the soul.  It can take a monumentally tired body and put it to good use.  After the groceries were put away, I did tuck myself into a comfy chair for two hours of uninterrupted reading bliss.  There are some good things about recovery.  Reading, an often stolen moment from each day for me, has a regular place in my healing.  I have to read because it keeps me still, while it keeps my busy mind occupied.  Without it, I would find some mischief to get into (like cleaning my messy kitchen)…and it would likely be far worse than wandering around a store with acreage to spare.

Healing

Healing is serious business.  It takes nearly all of a person’s energy, and yet requires that the person still move, eat, and rest in helpful measures.  Exhaustion seems always to lurk nearby, waiting for the most inopportune moment to strike.  For me, it likes to wallop me in the middle of a family dinner, half way through folding clean laundry completely littering my bed, or near the end of writing a blog.  

I look healthy…in fact, I look good.  If someone were to see me sitting and watching my kids at a gymnastics practice, no one would have any idea that two weeks ago I donated a kidney to my Dad.  It is only when I get up to walk, try to find a comfortable position when I first sit down, or dine with someone who really knows me do people have an inkling of my recent surgical past.

I don’t want to eat.  Apparently, this is normal.  There is something about shutting the gut down (pre and post surgery) for so many days that makes is slow to regain its former momentum.  Today, I made myself two fried eggs for breakfast.  I had two bites and thought, “who could eat this awful stuff?”  Why would I say such a thing about my favorite eggs?  I would guess that it is because everything tastes ridiculously potent to me these days.  Salty foods are overly salty, and sweet foods are even worse.  My eggs were very eggy, whatever that means.  My husband says that I have to stop using the words “cloyingly sweet” to describe anything containing the slightest hint of sugar. 

I have to eat so that I have some energy.  At 3:30 this afternoon, I settled on forcing myself to eat an English muffin with peanut butter.  It made me feel better, but somehow overstuffed.  I have also had some grapes, a handful of blueberries, and a Tiger’s Milk bar over the course of the day.  Not the best diet, but something is better than nothing.  I’m going to attempt a salad, because that sounds good right now.  If I make it past three bites I will celebrate! 

So, if you hear hoots and hollers at your house—don’t worry, it’s just me jubilantly enjoying my salad.