Waiting

Waiting is hard.  In fact, I am notoriously terrible at waiting.  And since all that there is to do now is wait and prepare, I have decided to focus my energies on the latter.  I am actively preparing my body and mind for what lies ahead.  Three months seems like a long way off in some senses—and it seems like tomorrow in others.

This week, I began my relaxation exercises and biofeedback.  I am happy to report that I am already feeling much, much better than I sounded in my last entry.  Life is truly good, and I am getting a handle on my priorities and discussing them (out loud) with the people in my life so that they can truly support me in the way that I need.  Humans are poor mind readers.  It is unfair to expect others to know what you need without explicitly asking them.  And when they don’t know what is needed, they tend to give you bits of advice and help that is exactly the opposite of what you truly need.  

So in my search for something concrete to aid in my preparations, I stumbled across a fabulous blog.  It is http://takemykidney.blogspot.com.  The blog was written about five years ago and chronicles a daughter who donates a kidney to her Dad.  The author speaks about what I am going through—and writes in such an informative and light hearted manner.   Once I began, I couldn’t stop reading. 

If you have the time, or are going through the same journey, I would encourage you to read her blog.

If relaxation is a destination—then I am in serious need of a map!

“Stress: The confusion created when one’s mind overrides the body’s basic desire to choke the living daylights out of some jerk who desperately deserves it.”  Anonymous

“For fast- acting relief, try slowing down.” Lily Tomlin                                                                

“There’s never enough time to do all the nothing you want.”  Bill Watterson, Calvin and Hobbes

“I try to take one day at a time, but sometimes several days attack me at once.”  Jennifer Yane

“Slow down and everything you are chasing will come around and catch you.”  John De Paola

“I try to avoid stress-it makes me feel like I’m rubber-stamping all my organs “Urgent.”  Berri Clove

“Tension is who you think you should be.  Relaxation is who you are.”  Chinese Proverb

“Take rest; a field that has rested gives a bountiful crop.”  Ovid

There are hundreds of great stress-related quotes; filled with witty introspection, succinct comparisons, and sound advice.  The difficulty is to truly put into practice relaxation techniques so that life’s many stresses are incapable of affecting one’s actual health.  I wish that I could say that I have found an easy solution to something for which I have struggled all of my life.  Unfortunately, I have distinct proof that it is my greatest challenge and current battle.

As I write this, I need to explain that I do not feel that my decision to donate a kidney to my father is the reason for any of my stress.  Yet I can say that my decision to give my father a kidney has created stress for other members of my family and they are now piling their hidden worry on top of me like an avalanche.  No one is admitting anything.  They keep to the party line—"they support me one hundred percent and want to help in any way that they can."  But I am a great barometer for the feelings of others.  I take on their stress and try to alleviate it in any way that I can.  In this case, I cannot alleviate their stress.

Intellectually, I can understand their tension and possible misgivings.  I am healthy today—but what about tomorrow?  I have no definitive answers.  There is no guarantee, and my family members understand that…I wish that they could verbalize their fears with someone (including me) and work on putting them into a place the feels comfortable.  Instead, I am constantly bombarded with negative, or tension filled, energy and it is beginning to take its toll. 

This week, my body fought back.  Usually extremely healthy, I seem to have hit a wall.  I spent a solid week giving everything that I had to a daughter with the flu, while still trying to go about my normal life—and then got hit with a massive amount of negativity.  I kept hearing in my head, “Stop hitting me with them negative waves, Moriarty,” as said by Oddball in the movie Kelly’s Heroes. 

So I quit.  I put myself to bed early and took stock of everything that was doing me in.  I had a week’s worth of conversations (with myself and with others,) and in the end, I have a plan.  Here it is:

1.)    I will take time each day to make sure that I have done at least one thing that fills my soul.  For me that means writing, painting, hiking, or creating works for my students.

2.)    I will make sure to tell others when I am angry or frustrated.  (This includes addressing outrageous requests, bad behavior, passive aggressive comments, and anything else that ranges from marginally to entirely hurtful.)

3.)    I will make sure that my family understands how much I love them, and not use my physical or emotional sacrifices to illustrate that love and devotion. 

4.)    I will learn to relax.  I know that I will never learn to take life less seriously—that is who I am.  What I must remember is that taking life seriously requires a commiserate level of relaxation.  I am looking forward to working on this skill.

I hope that you enjoy a week of similar denouement and find success in your relaxation.  I’m drawing my map and this afternoon it includes a hike through the woods with my children.

Living Donor Chains in the News

I was pondering what to write for this week’s blog when I stumbled upon an article in the “Pittsburg Post Gazette” about a 32 person chain that facilitated 16 Living Kidney Donations.  The article can be read here: http://www.post-gazette.com/pg/11064/1129864-114.stm.

Each one of the Living Kidney Donors in this chain had wanted to donate to a relative or loved one, but had not be deemed a good match.  Facilitated by the National Kidney Registry, these potential donors were able to donate to an unknown individual in need of a kidney.  Their donation allowed their loved one to receive a kidney in kind from another such giving donor. 

If you are healthy and considering Living Kidney Donation…but are unable to donate to a loved one, this seems like a wonderful alternative.  Your loved one is given the gift of life, while you give the same gift to another.  As more people are provided with the chance for life in this way, more people with kidney failure, unable to receive a Living Kidney, are provided a greater prospect of receiving cadaver kidneys as they become available.  The waiting lists shorten and people in need have the opportunity to truly LIVE.

It feels like the ultimate in what it means to be human--giving some of what you have to help another.  I know that not everyone can do this in such a concrete way, and I am not suggesting that everyone should.  It just heartens me to see such stories in the news.

The Joys of Pre-Transplant Testing

Several friends asked for more information about the monumental testing that I endured prior to my being officially sanctioned as a potential Living Kidney Donor.  I am going to try and tackle that today.

In the middle of May 2010, the official envelope bearing all of the orders for my testing arrived.  Not surprisingly, it did so with little fanfare.  I carried the envelope like a newborn and placed it in the center of the kitchen table.  I grabbed a pair of scissors and slowly slid one of the blades beneath the flap.

I opened the envelope and let the contents slide onto the table with a soft “whoosh.”  Before me lay a folder filled with documents, brochures, and an ID card.   I perused the questionnaires, the informational pages, and then the medical testing orders; spending nearly an hour reading and rereading each one.  As you can tell, I took all of this rather seriously.

Since I live thousands of miles away from my father, it was agreed that I could do the bulk of the testing in Indiana.  There were going to be three stages of testing.  Stage one would involve multiple blood and urine tests. Stage Two would involve the all-important cross-match, while Stage Three would include a trip to New Mexico to meet the Transplant Team and do the final (and most difficult) tests.

I made an appointment to meet with my own Dr. to make sure that I was going about this in the correct manner.  He looked at all of the orders and answered all of my questions.  He made arrangements, with the hospital, so that I would be sent copies of the results of each test.   He wanted to make sure that, as I traveled (and if there was ever any question that I had taken the tests,) I would have copies of the results with me.  ***I would highly recommend this for anyone interested in pursuing Live Kidney Donation for their loved one: Keep records of every test that you take, the date that you took them, and the results of each test (if you have a Dr. who can advocate for you to receive them.)  I have needed to use my documents only once so far—but it saved me an additional day of testing (in New Mexico.)

Holding my many orders, and having fasted since midnight, I walked into the local hospital and registered for a large collection of tests.  The transplant hospital in New Mexico had sent me an ID card that allowed me to register for the tests, with the understanding that I would not need to pay for any of them.  The transplant hospital (and my father’s insurance) would cover the costs.  That was a load off my mind.

That morning, the phlebotomists took a sample of my urine and about 8 different tubes of blood.  Next, they started my 2 hours Glucose Tolerance Test.  After drinking the cloyingly sweet liquid and then waiting for two hours, they took my blood once more.  The day’s tests included:  ABO and Rh, Comp. Metabolic Panel, CBC with Diff., Lipid Panel, Glycolated Hgb, Urinalysis, Urine culture, Urine Microalbumin, and 2 hour GTT.

The next set of tests proved a bit more inconvenient.  I chose to do them on a day when I knew that I could spend the day at home.  The goal was to collect every drop of my urine over 24 hours—and do so in one container.  The container had to be kept in the refrigerator and used each time I needed to urinate.  They gave me a lovely plastic container they called a “top hat” for collecting my urine and a large orange jug with a screw top for comingling it.  These items made everything easier.  When 24 hours was over, I carried the large, plastic, urine filled container into the hospital.  I did this twice over two weeks.  The things we do for the ones we love… 

The third set of tests came a few weeks later.  I returned to the hospital for more blood draws.  The tests included: Renal function panel, EBVG IgG, CMV IgG, HIV, Hepatitis profile, and RPR.

The cross-match was performed around the same time.  With every test reading as it should, they scheduled my visit to New Mexico.  I flew out in August and spent two days doing what was described as “wall to wall” testing.

On the first morning, I started with and EKG and Chest radiograph.  The EKG was harmless and the Chest x-ray was even more so.  I realized that it had been a very long time since I had needed such a thing.  These days, everything is digital.  They let me stand in front of a plate, took the needed angles, and could instantly see that they had what they needed—all on a ten inch screen. 

The last time that I had seen my chest radiograph was my freshman year of college.  At the time, I was diagnosed with walking pneumonia.   The Dr. had taken the film and slapped it on a light box in the lobby of the University Health Center.  At the top of his voice, he pointed out my anatomy, taking great pains to point out the density within my lungs and then the breast shadows.  I can still hear necks cracking all around the room as young men everywhere looked to see what he was describing.  The mortification I felt is acutely etched in my memory. 

They saved the worst, and perhaps most important, test for last.  That was the CT Scan.  What made this a difficult test was that they needed a deep vein for the contrasting dye.  I have had many catheters floated in my arm in my lifetime, but this was the most painful that I have ever experienced.  The technician was lovely, so I do not mean to say that she did a poor job.  It may be that my veins were already tired from the multiple punctures of the months before, or it may have been the depth needed to find the right vein.  Regardless of the why—it was awful.

Once the catheter was placed, I was wheeled into the CT room.  I crawled onto the tray and asked about a dozen questions of the technicians.  The best information came in this form: “When I start the iodine, you may get hot.  In fact, you may feel like your pelvis is on fire.  This will pass almost as quickly as it comes.  Just do what the computer tells you and we can get this the first time.”

Without understanding that feeling like I had been deliberately set on fire was part of the plan, I would have leapt from the machine screaming.  Instead, I let the fires lick me as I waited for the relief that, I had faith, was coming.  It was exactly as she had said, and ebbed as quickly as it had come. 

Following the tests, I met with a Transplant Coordinator, a Transplant Social Worker, and an Independent Donor Advocate.  I had several interviews, each time being given the opportunity to share my story.  The Transplant Team members wanted to ensure (1) that I understood what I was choosing, (2) that I had not been coerced into such a life changing thing, and (3) that my decision to do so would not adversely affect my life.  I was happy to talk to each of them, and found their questions thoughtful and comments helpful.  That concluded my first day of testing in New Mexico.

The second day began with an appointment to see the Transplant Nephrologist and ended with a visit to meet the Transplant Surgeon.  Both men were extremely knowledgeable and interested in ensuring that I would be as whole coming out of this procedure as I was coming in.   The surgeon asked me the most interesting trick question. It is the most memorable part of my time in New Mexico and I would like to share it with you here:

He said, “Say that we look at your CT scan and see that you have two fully functional kidneys, yet there is one minute difference.  One of your kidneys is slightly smaller than the other.  Which one would we give your Dad?”

I answered that Dad would get the smaller one.  After all, they had spent days telling me that my health was extremely important.  But my answer was decidedly incorrect.

“We would give him neither kidney,” he said quietly.  “If both of your kidneys are not perfect in every way, why would we take one from you?  And why would we give your Dad an imperfect kidney?  He needs a healthy kidney and you need a healthy kidney.  If we find anything at all that indicates that you will both not have what you need, you will not be considered as a candidate.”

After two days of testing and interviews that focused entirely on me, it was easy to forget that this was, ultimately, all about my Dad.  If he was not going to have the opportunity to be made whole by this procedure, then why do it?  Dad needs the best chance at success, like I need the best chance for continued health.  One healthy kidney means LIFE.  It is no wonder they take all of the testing so seriously.

To all of the conscientious Transplant Teams out there—thank you for that!