Logistics

I tried not to think about organizing my children’s summer while vacuuming the house.  I tried not to think about where they will stay while I have surgery (in another state) while I paid the bills.  I tried not to think about the heart-wrenching decision not to have the kids stay with my husband and me during the time that we will be in New Mexico while I washed the dishes.  In short, I have been expending a great deal of energy trying to put off the maddening logistical planning that lies ahead. 

The need for all of this planning is more apparent than ever because this has been a banner week for communication with the Transplant Team.  Our surgery date is now edging closer to becoming official.   (It is not allowed to be truly official until 60 days before the surgery.   The Transplant Board needs to meet one more time on our behalf so that they can review all of our tests and evaluations—making sure that nothing important has been overlooked.  The entire Transplant Team takes going forward quite seriously; as I repeatedly say, “they should.”)

My previous Transplant Coordinator has recently left her job with the hospital.  That meant that when Dad and I decided to get going on scheduling a date, my Dad spent about a week nudging his Recipient Coordinator to ask my new one to call.  With several staff vacations mucking up the process, I was finally able to speak with her this Monday. 

I had met her, last summer, during the time that I had flown out to NM to finish up the most crucial tests.  I remembered her as being very friendly, concerned, and knowledgeable.  That impression stays with me today.  She was patient and answered every question that I thought to put to her.   At the end of the conversation I felt confident enough to write the surgery date on the calendar in ink.   

This may seem like such a simple act…but I had silently refused to write it on the calendar one more time, only to discover that we would be putting it off for another year.  I have been through that dance once before and it altered an entire summer’s worth of plans for my whole family.  (Thankfully, my Dad’s kidney decline has been measured enough to withstand the wait.)

By writing “Surgery Day: Living Kidney Donation” on the 9^th of June’s calendar page, the inescapable logistics of my donation began to dominate my thoughts.  I have since tried everything to stuff them someplace else.  I even started spring cleaning my house—and it is anything but spring in Indiana.

I loathe trying to divine what each member of my family will be doing with the first portion of their summer.  Their worlds are being turned upside down because I have made the choice to be a Living Kidney Donor. I understand that they were part of my decision process, but it feels less like they had a say when they are the ones being grossly incommoded.

Originally, I had thought that the kids could come out with me.  The surgeon had told me that it would be more of a burden for me to be so far away from home and so far away from my support network.  He suggested that I bring them if it was at all possible.  My husband and my kids top the list of that network.  In my mind that meant that they should come with me.  But what would they do during the long hours at the hospital?  How could my husband support me, help my Dad, and still entertain them?  After the surgeries, my Dad will be in a fragile immunological state.  He won’t even be able to be around them.  Would that be fair to my ten and eight year old children?  Would that be fair to my Dad?

With much soul-searching, I had to change my thoughts about the transplant.  It would be great for me to have my support network with me, but I am not the only one to consider.  My kids and my Dad should have their needs met as well.  And my biggest advocate (my husband) will be right by my side.

So here are the big questions: What exactly will I be doing in June?  Followed by—how will that impact my families’ summer while I donate a kidney and then recover from that donation?  There is also an important addendum that needs to be inherent in the last question:  How do we make these choices while always keeping in mind what is best for them?  No wonder I have been trying not to think about this.

The first question is easily answered.  I know what day I must fly out to NM, what days I will have Dr.’s appointments and blood tests prior to the surgery, what day we have the surgery, and the approximate time spent in the hospital following the transplant.  I even know the approximate date that I may return home, should everything check out as planned.

My Dad is trying to find a way for the four of us to be together after the surgeries—and still stay closer to the hospital.  He will have many Dr.’s appointments and blood draws for the first 4 weeks, whereas I will have a single appointment with the surgeon one week following the procedure. 

The second question is much harder.  It is already set that my husband will be out in New Mexico with me, helping me through every step, and lending any assistance that he can to my Dad and his wife.  But that leaves the most important for last.  What are we going to do with the kids during our two weeks in NM?  Right now, we don’t have all of that completely figured out.  I know that we will rely on the kindness of our extended family and friends to keep their lives as “routine” as possible. 

We are blessed to have so many exceptional people in our lives.  They have opened their hearts and their homes to try and help in any way that they can.  Whatever we decide, we know that our kids will be safe, loved, and comforted in the “recreated normalcy” of their lives.

There is nothing more important to me than my family.

Change

Ice covers the ground

Sitting as the embers glow

Thoughts dwell on change

In an effort to be as prepared as I can beforehand, I have been seriously considering the many changes that my life will take after kidney donation.  I have taken to the internet for research.  I have found wonderful sites in many nations (and languages) that discuss what life will be like after living kidney donation.  The first thing that each site chooses to express  is the understanding that for a person with one kidney there should be no contact sports or those that may contain a higher percentage chance of injury.  The list includes: martial arts, skydiving, football, rock climbing, motocross, rugby, roller derby, surfing, boxing, ice and field hockey, rodeo bronco riding, soccer, and racecar driving. 

I do understand the reason for such specificity.   When one kidney becomes a solo act, it grows larger—making it more vulnerable to damage should one enjoy such sports as those I mentioned previously.  It is just that the only sport on the list that has ever held any interest for me was rock climbing.  I prefer rock-hopping and short free climbs—but never anything more technical than that.  In my twenties I had wanted to learn how to rappel, but my complete terror of heights stopped me from taking that idea any further.  Now, it will have to remain a ridiculous thought with no need for completion.

What else will change? I won’t be able to drink rock stars under the table.  (Not that it was something that I ever had an opportunity to do.)   I always loved the idea that I could have one moment where I was like the “Marion” character in the first Indiana Jones movie.  I’d drink the men under the table and then be the last woman standing, clear-headed, to fight the bad guys. 

I do love the occasional glass of wine, beer, bourbon, or gin martini…and I can still enjoy them with the understanding that less is more.  Yes, alcohol filters through the liver, but since the kidneys regulate the fluids inside one’s body—they will have a more difficult time doing that if one does not pay strict attention to alcohol consumption.  So I will savor that dirty martini when I have an opportunity to imbibe—much like I do now.

Medications will become more limited.  I will no longer be able to take many over the counter medications, such as NSAIDs.  This group of anti-inflammatory medication is great for relieving any sort of inflammation—arthritis, headache, muscle-ache, cramps, etc.  Yet, when I have one kidney, I will not able to take NSAIDS because I will no longer have the quantity of glomeruli (tiny capillaries that filter the blood within the kidneys) sufficient to filter out such medication.  As a lifelong headache sufferer who uses it weekly, this feels like the biggest hurdle somehow.  What will replace the ibuprofen? 

That answer has been under much discussion lately.  I am very blessed to have amazing friends with big ideas.  Biofeedback training seems to have the biggest pull on me right now.  The idea of being able to train my own brain to relax and open the constricted blood vessels, that feed that most vital piece of thinking real estate, has me completely intrigued.  If I could train my body to relax at my command, it would do more than alleviate my headaches.  It would help me with my teaching, it would help me balance my life, and it would help me to more effectively pour my energy into my passion for the written word.  That seems like a valuable gift indeed.

A future illness will force the biggest change.  Currently, when I get a cold or a stomach virus I tend to gut through it.   I often go to work (providing that I am not contagious) and continue along in my day doing all of the things that I feel that I must (taking the kids to gymnastics practice, working on creating activities for my students, and keeping up with everyday life.)  I will no longer be able to continue working at 100% through an illness.  Maintaining a fluid balance is more difficult with one kidney, so I will have to learn to slow down and actually take care of myself.  Wow!  That’s another gift.  Am I actually giving a gift of life or receiving one?

Saint or Idiot?

An appointment with my allergist gave me another opportunity to share my summer plans with a different set of medical professionals.  After speaking with half of the staff, I left feeling drained of energy.

People’s reactions are always a mixed bag and some days I can handle them better than others.  Ranting loudly to myself on the drive home, I realized that the staff’s comments created a need to express my feelings on the matter.

Whenever I speak to someone or share my story, people inevitably want to put me into one of two categories: saint or idiot.  My hope is to scrutinize those two possibilities here, and ultimately give them no credence at all.

Am I a saint?  No.  I feel that I can answer that definitively.  I am a good person who actively works to live a good life. That does not make me a saint; that makes me a person trying to be my best self.  That is all.  Saints are dead.  They are extraordinary people who spent their lifetimes doing notable works.  In order to be considered for sainthood, they must then perform two posthumous miracles (one for beatification and two for sainthood.  Martyrdom makes the miracles unnecessary.)  That seems like a lot of pressure after a life of selfless work.  I can guarantee that no one will be examining my life for such things.

Have no doubt that I am giving my Dad a kidney for exceedingly selfish reasons.  I want my Dad around for a long time.  He is 71 years old and I have plans for him to be around for the next 20 or more.  His mother died at age 97.  I can see no reason that he cannot have the same longevity—providing he has a working kidney.

Okay—so I am not a saint…then I must be an idiot.  It is true that I have made questionable decisions, but they are of the type that fall in the category of, “What possessed you to wear that?” or “Did you need to eat that 5th piece of chocolate?” or “Why did you go on a second date with that guy?”  I like to think that my life decisions have all been above board…amazing husband, outstanding kids, great friends, and a fulfilling job.  In my mind, deciding to give my Dad one of my kidneys ranks a thoroughly competent decision.

People have said so many things to me over the last year.  Some comments are lovely and heartfelt, while others begin with, “You are going to what?!” and move on to “Oh, well…good luck with that.”  Without using specifically identifiable words, derision and condescension drips from their tongues.  I am an educated, intelligent woman.  I do realize that I am giving away half of a set.  I also know what I am gaining.

I have a perfectly healthy pair of kidneys.  The Transplant Team would never have approved me if that were not in evidence in multiple blood tests, urine tests, Ct Scans, and Radiographs.  As I have mentioned before, the testing process is arduous and thorough.  It should be.  This gift is not for the faint at heart.  I am simply giving my Dad one healthy kidney and keeping one healthy kidney.

My remaining kidney will grow larger until it can take on the job that both of my kidneys had been doing previously.  The decrease in kidney function should be mild and will increase as my enduring kidney becomes more efficient.  My life span will be the same as anyone else with two kidneys and my Dad’s will be as it should be.  Does that make me an idiot, because I know that it does not make me a saint?  I am simply a daughter who hopes to give her father a little more time on planet Earth. 

What would you do?

Begin at the Beginning…

That is the direction my children gave to me when I asked them what they thought of my writing a blog.  It is my goal, within this space, to attempt to chronicle my journey as a Live Kidney Donor.

My Dad has had slowly failing kidneys over the past 33 years. They were damaged many years ago—and the cause is still a mystery.  Some Nephrologists have thought that the damaged was due to the prescription medication that my Dad had taken as a child for asthma, while others have said that it might have been caused by a virus. Regardless of the catalyst, his hard working kidneys have been slowly losing steam.

Around Christmas in 2009, my Dad informed me that his kidneys were getting much worse and that his doctors were beginning the process of putting him on the transplant list.  He had a great deal of testing to go through in order to be approved for such a life saving procedure, but he was confident that he was going to be able to move forward with something that would significantly improve his quality, if not quantity, of life.  At the time, I did not know what it would take for me to be considered as a Live Kidney Donor, but I wanted to see if I could be a candidate.

I do not want anyone to think, that since my Dad was the one that needed a kidney, that it was a foregone conclusion that I would give him one.  If one of my kids needed a kidney, the Doctors would have had to work hard to stop me from taking it out myself.  That being said, this was not a decision that I came to lightly.  So how did I decide?

First, I talked to my husband and my kids.  I wanted my support system to be a part of my decision from the beginning. If any of them had any real fears or hesitancy about my going through with this, then I was not going to proceed.  Each one had pertinent questions that needed answers, but they were 100% behind me should their answers be satisfied.  They love my Dad too.

Next, I went online to all of the websites dedicated to Live Kidney donation.  I found out about tissue cross matching, blood types, risk factors, and the numerous tests that are used to qualify or exclude someone from donating.  I found that provided no abnormalities existed in my own anatomy or kidneys, then I could be a candidate.

I explained to my Dad what I wanted to do, and he was both pleased and sad.  I am guessing here; because like most fathers of his generation, my Dad is not particularly demonstrative when it comes to saying how he feels.  I know that he feels as every parent would: Thrilled that his daughter would be willing to donate a kidney for him and sad that she would have need.  I know that I would feel exactly the same if our situations were reversed.

He sent me a video entitled, “A Gift for Life: Live Kidney Donation.”   It can be found at www.TransplantExperience.com

It was quite helpful in the emotional aspects of my decision.  I knew at the conclusion of the video that I was making the right choice for me.  That is the most crucial part of all of this.  Donating any part of yourself has to be a gift given with your whole heart.  A Living Kidney Donor cannot have any reservations or doubts.  It is a heady choice to give up your back-up plan, and there is no guarantee that it is even going to work in the person for whom it is intended.  The Doctors do everything that they can to ensure for a successful kidney transplant.  They review hundreds of tests for both the donor and the recipient to make sure that everyone is healthy enough for the surgeries, the recovery, and their lives ahead.  They also provide the anti-rejection medications that recipients need to take to ensure that they can keep the gifted kidneys healthy and strong.   Yet, nothing in life is certain.

So I showed the video to my family, and they felt the same.  I answered as many of their questions as I could. Then, I went online to read all of the blogs that I could find discussing Live Kidney Donation.  I found truly remarkable people online--people who told heartwarming stories of giving their kidneys to complete strangers, who shared snippets and horror stories about pre-approval testing, or who spoke exclusively of their recovery.  I wanted to read at least one person’s first person account of the entire process.  That is why I decided to write my own.

My Dad was approved in March 2010. We had initially hoped that I could have donated last summer, but the testing and approval process is lengthy.  It should be.  So in March 2010 I started the pre-approval testing.  I got my blood drawn so many times that the technicians at the local hospital were getting used to my veins.  They knew the best places to draw blood while trying to stay away from the old bruises.  I had so much of my body checked…and then they needed even more.

Over the summer, I flew out to New Mexico and finished up my testing at the hospital.  I had a CT scan, a chest x-ray, an EKG, and more blood tests.  Feeling like I should already qualify for the next mission to the moon, I met with the Transplant Team.  This Team included my Living Donor Advocate, a Transplant Social Worker, a Transplant Nephrologist, and a Transplant Surgeon.  When the Transplant Team met in August, I was given a green light and made an official candidate for my father for Live Kidney Donation.

I am a Preschool and Kindergarten teacher at a wonderful Montessori school in my hometown.  This means that I needed to schedule the surgery around my students.  Being a conspicuous part of each child’s school day, I cannot simply disappear from my classroom for the required six weeks, while I donate a kidney and recover from the surgery.  My Dad’s Nephrologist agreed that he could wait, but if his health deteriorated or the situation became emergent…we would discuss moving up the schedule.

So now we are officially on the calendar.  In June 2011, I will be traveling 1,148 miles from my home in Indiana to my Dad’s home in New Mexico so that I may give him one of my two healthy kidneys.  I will post weekly so that I can describe the journey that will ultimately make me a One Kidney Wonder.