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.

Back Home Again in Indiana

First let me start off by saying that it is good to be home.  Home is where my heart is, home is where my kids are, home is where I will best heal.  I am with my family and friends again.  I have truly missed them. 

It is hard to say that I enjoyed my time in New Mexico, considering that I was intentionally going out to have major surgery, but I did.  I love my Dad and I actually enjoyed spending time with him—even in the hospital.  The people of New Mexico, that I had the pleasure to meet, were warm and helpful without reserve.  Whether it was getting lost in the hospital, getting locked in an elevator, or misplacing my glasses loving people came out of the wood work to help.  I have already mentioned the medical staff at the hospital, so I will not gush any further.  By now you should see a pattern—I have encountered caring people everywhere.  It was a good place to give Dad a great shot at life.

When I sat down to write today, it was my original intention to describe our adventurous ride home to Indiana.  Early on in the logistical phase of giving my Dad a kidney, there was some confusion about the best way for me to get home after the surgery…since we live so far away.  I had been told, at that time, that the risk of Deep Venous Thrombosis (DVT) is quite great after surgery.  Then, when you compound that with the idea of being stuck in an airplane with people on any level of health (think germs,) it was decided that we should find another mode of travel.  What naturally sprang to mind was the option of renting a car and driving home over the course of three days (stopping every two hours to get out and stretch.)

After the surgeries, my husband started to run down the details related to renting a car one-way across country.  Rental agencies do not like this.  They add hundreds of dollars in fees to anyone who should decide such a foolish venture.  Several of the agencies that Steve called even referred him to rival companies.  They really don’t like to do this.

After getting off the phone for the fifth time, with a yet another young woman less that eager to rent us a car, I mentioned the idea of traveling by rail.  “Is there a way that we could get home by train?” I asked.

Steve was off and running.  He has always wanted to travel by train, and this was a golden opportunity.  My only insistence was that we have a sleeper car.  I am glad that I insisted on this.

On June 18, we got on the train in Albuquerque, NM and 22 hours later exited the train in Galesburg, IL.   It was quite an adventure.  They did not have a Sleeper Car available for the first 4 hours, so we sat in Coach during that time.  The seats were large, our fellow passengers were knowledgeable, and time passed quickly in the open compartment watching the desert landscape glide outside our windows.  Before long, the Conductor was telling us that our compartment was ready and that we could move forward to our Sleeping Car.

If you ever do this, after you have donated a kidney, do not carry any of your own baggage.  You are not allowed, no matter if it has wheels or can easily be slung over your neck.  I tried this, and it was a VERY BAD IDEA.  In order to move forward through an entire train, with all of your bags, you must carry them off of the train, walk beside the train to the new compartment, and then reboard your new car.  Picture Steve and I getting off of the last Coach car, Steve heavily laden with as many bags as he could carry, and me carrying my purse (slung across my body) and grabbing the long handle of my rolling suitcase as it was set on the cobblestone bricks that lined the edge of the tracks.  Can you see it?  Picture a slightly red-headed woman as she is attempting to roll a ridiculously cumbersome bag across the sand and rubble strewn bricks.  Picture still as the purse threatens to pull her to one side and drop her on the ground.  At one point I just burst into tears, unable to go any further. 

Steve saw my predicament and asked me to stay where I was.  He ran the rest of the way to drop off the bags with the intention to then come back for me.  Just as he got to our new train car the whistle sounded.  I already knew what that meant—two minutes and the train would be moving again.

I grabbed the handle and tried to make it to the door when two angels jumped from the car and rescued me.  They were passengers who were traveling home to Wisconsin.  We had dined with the beautiful women for lunch in the Dining Car and I had told them my story.  They knew that a sobbing woman covered in stitches needed someone to help—and they readily volunteered.  They gathered up my bags and helped get me into the car before it started rolling again.  Steve met us at the opening, relief clearly playing across all of his features.

Once ensconced in our Sleeper Car I was able to rejuvenate myself.  I put my feet up and watched the countryside slip by as we counted antelope, jack rabbit, and pheasant.  It was a wonderful ride.  We had dinner in the Dining Car and watched the sun set in the Lounge Car.  We even caught a few storms clouds rolling in as they unleashed their electrical energy. 

Sleeping on the sleeper bed was a bit trickier.  I kept thinking that if I had a few more pillows I would be less nervous about being rocked from side to side as I slept.  I did manage a few hours of sleep, but more than that had a great deal of time to stretch out and rest my body.  In spite of the uneasy sleep, I did awaken feeling like this is a great way to travel.

We ate breakfast in the Dining car and took a walk (a rickety one) through the cars to stretch our legs.  How else can you eat, sleep, walk, and still drive relatively uninterrupted to your destination?  I can’t think of one. 

My wonderful father-in-law picked us up in IL and drove us the rest of the way home.  The drive lasted four hours and was the most jolting of the trip.  Add another check mark for taking a train.

I am home and healing.  I will write more about that later.

Our Story: Living Kidney Donation and Living Kidney Transplant

One week ago my father and I ambled into the hospital and signed ourselves in as Living Kidney Donor and Kidney Transplant Recipient.  We walked the diagonal corridor to the elevators and parted company—me for the surgical unit and Dad for the third floor.  With our staggered starts in surgery, he needed to prepare upstairs, while my surgery began downstairs.  We kissed and said a brief, “Good Luck” and “I love you!”  What more can you say with your heart in your throat?  Shakespeare himself would have had a rough time.

My husband, Steve, and I wandered into the surgical waiting area and signed in.   Funny how many times they ask you the same questions as you fill out more and more paperwork.  I am certain that they wanted to be sure not to have missed anything.  Their thoroughness was obvious at each stage of our care.   

They called my name and a volunteer led Steve and I to the bank of elevators that effortlessly whisked us down onto the surgical floor.   We followed her lead and moved into our curtained cubicle.  I got undressed and put on a cotton hospital gown (lacking in all of the fashion sense that all good hospital gowns abjure.)  A hat and booties combo (which she referred to as my cowboy hat and spurs) topped off the look.  When I was finished dressing my husband took possession of my clothes as several nurses began my IV, added a pulse-oximeter, fitted me with air-filled compression leggings, and attached a blood pressure cuff.

I met with my Anesthesiologist and understood that he would be giving me a cocktail of anesthetics, designed to meet my needs for the various stages of surgery.  I met one of the surgical nurses and said, “Good Morning” to my surgeon, Dr. Lopez. 

After I saw Dr. Lopez, my whole body relaxed.  There is something about this man that brings calm to the surface.  I believe that is his acute professionalism and attention to detail.  He has always been so thorough in every conversation and explanation that he has ever given; I knew that he would be watching out for me and that his primary job was to make sure that I was fine through all of the stages of surgery and recovery.  I can tell you from my experience that he takes that job very seriously.  I am truly grateful for such care.  I know that my father’s surgeon gave him the same meticulous care.

After speaking with Dr. Lopez, things moved along more quickly.  Before I knew it, I was saying “I love you!” to my husband and he was heading up to the third floor to wait with my Dad before his surgery was to begin.  I remember being wheeled along one corridor after the next into the Operating Room.  At some point the Anesthesiologist injected a medication into my IV line.  If he told me what it was, I do not remember.  Things got a bit swimmy after that and I vaguely remember the bed coming to a stop as someone placed a mask over my nose and mouth and asked me to breathe.  I remember nothing beyond that point.  I only remember waking up in my Hospital Room, smiling at my husband and anxious to hear the news about my Dad.

Here is what I do know about the surgeries: 

·         I know that the ladies at the Surgical Waiting Room’s main desk kept my husband completely informed.  I know that members of the Transplant Team also called him throughout both surgeries so that he had the most accurate and up-to-date information possible.  I am grateful to them for their thoughtfulness.  Steve was a one man show that day—keeping all of our loved ones informed of our progress, while still hanging out with each one of us before and after the surgeries.

·         I know that my surgery lasted less time than anticipated and that my Dad’s surgery followed suit. 

·         I know that my recovery from anesthesia was a lot faster than anyone had anticipated; so much so that my husband had left the hospital and had returned to the hotel to make some phone calls and send emails about my progress.  He received a call at the hotel that I was out of recovery and officially ensconced in my own room.  He rushed back to see me.

·         I know that while I was in my room, we were informed that once the blood supply to my donated kidney had been attached to my Dad it began producing urine almost immediately.  The surgeons had to work double time to attach the ureter to his bladder so that it was dripping into the proper reservoir for such liquid.  Transplant professionals always worry about any kidney being transplanted—and monitor it faithfully to know exactly when it will begin working.  Working without delay is the best sign!  This made me exceedingly happy. 

I felt ridiculously good following surgery.  I had a morphine pump, anesthesia still lending some analgesic affects, and my Dad and I were both doing quite well.  That afternoon was a breeze.  What followed was a bit of a scary night in which pain medicine and my body’s acute sensitivity to such things played havoc with my senses.  I awoke terrified and unable to make sense of my surroundings.  Dr. Lopez and the Transplant team were there to take any measures necessary to put me right.  By that afternoon, the pain medicine had worn off and my dosage and frequency had been specifically tailored to me.  The rest of the time in the hospital was spent healing little by little every day.

Hospitals are not known to be places of rest, relaxation, or great dining experiences.  The hospital that cared for us was no exception.  Great hospitals are, however, places of healing, and home to many talented health care professionals.  My father and I were privileged to have had so many wonderful nurses, Drs, and Transplant Team members who took exceedingly good care of us.  I am especially thankful for their kindness, professionalism, skill, attention, and dedication.  You aided our journey back to full health in ways that we will never forget.  Thank you!

And this is really just the beginning.  Dad and I have lots of healing to do—more than a summer’s worth.  I completely understand that it will take a great deal of work to get back to that new normal.  I am just so excited that Dad and I are really so far already.  What a week it has been.

Leaving the Hospital

As I write this, my Dad is going through his After Care Binder with the most conscientious Post-Transplant Coordinator anyone could want.  It will take a great deal of time for them to sort through all of his medications, post-surgical appointments, and blood tests.  This is excruciatingly important information, and cannot be taken lightly.  My Dad and his body will need to work hard to keep his brand new kidney happy and healthy for the long haul.

As for his new kidney (the one that I gave to him,) it is performing admirably.  As of yesterday, his creatinine was that of a healthy person.  He cannot remember the last time he had seen his numbers so low.  He says that it has to have been a few decades ago.  I am beyond pleased and proud.  It feels like this was one of the reasons that I have worked so hard to be healthy all of these years—I just didn’t know it.

There is almost too much to tell as I wait for my Dad to return to our temporary hotel home…and the truth is that I do not yet have the energy to tell it.  I want to do it justice—for it was a life changing experience and one for which a few pithy sentences will not work.  Let me simply say that my Dad and I are healthy and healing. 

Healing is very hard business and anyone who tells you differently has never had surgery or ever been sick.  I am working hard to take breaks when I can, move when I should, stay ahead of the pain with medication, and eat what my body craves.  Right now, that is protein.  For a 20+ year Vegetarian, this is no easy task.  Fortunately, New Mexico is more than up to the challenge.

Check back for a narrative about my surgical experience and my time in the hospital.  I will try to give it the true weight that a story like this deserves.  And I’ll give you a hint—there were a few bumps in the road (as with any good story) but it ends happily.

Update on living kidney donation

Jennifer and her Dad are both out of surgery and working on their healing. Jennifer will blog her experiences as soon as she feels up to it.

Thank you!

My husband is on his way into town and will be arriving shortly--so my Dad and I are headed to the airport.  I wanted to take a few minutes to say a proper

We also want to say "Thank you," to the multitude of medical professionals that will have our lives in their hands tomorrow.  I know that they will have our health and safety in mind as we embark on the surgical portion of this journey.

Updates will be provided by my husband tomorrow.  "THANK YOU!" to the many wonderful friends and family members praying, well-wishing, and putting great thoughts into the universe on our behalf.  It is greatly appreciated and touches us to hear such an outpouring of support. 

Living Kidney Donation Envisioned

I have tried to put together a narrative of what I expect for tomorrow.  This may not be entirely accurate, but I want to write out a story that informs my body/mind so that I will be prepared.

On June 9, 2011 at 5:30 am, Dad and I will check in at the Hospital’s Inpatient Admissions.  Then, we will walk down the long, diagonal hallway to the point at which it Ts.  Dad and I will separate there.  I will head to the right and check into the surgical area.  Dad will head to the elevators and go upstairs to the third floor where he will begin his surgical prep.

The nurses will bring me back into the holding area.  My husband will accompany me.   I will change into a hospital gown, get my IV started, and talk to the anesthesiologist and the surgeons.  When all is ready, my husband will go and visit with my Dad and someone will wheel me into the Operating Room.

I will be anesthetized and go into a deep and pleasant sleep.  They will position me on my side so that my organs will naturally move out of the way.  The surgeons will make their incisions, manipulate their laparoscopic equipment, and work to extract my left kidney.    During the procedure, they will make a digital image of the procedure so that I may share it on my blog at a later date.  My body will work to aid the surgeons in any way possible, while keeping me healthy and calm.  The surgery will last about 4 hours. 

Following surgery, I will be moved into the Recovery Area.  I will remain there until I can cough, take deep breaths, and come out of the anesthetic.  This could last up to two hours, but will more likely be shorter.  Once I am ready, and my room is available, I will be wheeled to the third floor and into my hospital room. 

I will be allowed clear liquids and popsicles that evening.    My daughter believes that all surgery should end in ice cream, so she was sad to hear that I could not have any for awhile.  Hopefully, I will have the opportunity to get up and move around a bit.  Then, I should be able to visit my Dad.  He will be in The AICU working through the beginning of his recovery.

It will be a day full of healing and renewal.

Final Day of Prep

What can I say about magnesium citrate and its clean-out effects?  It is worse than I thought it would be.  I expected the explosive evacuation process and was richly rewarded in that regard, but I had not expected to feel so bloated and nauseous as well.  I know that it is necessary; it just feels like I am being weakened before the big day.  I am cold, tired, and easily brought to tears.  Not how I intended to spend the day before surgery.

Please understand that I had no misconceptions that this entire process would be easy.  I know full well that anything worth doing is difficult.  I just had hoped for something a bit less grueling.

As to how I am coping, I have a package heading my way this afternoon.  My children and their friends (with the help of my good friend Angie) have put together something for me.  Awaiting that parcel and for the minute that my husband arrives tonight is keeping me going right now.  I have really missed him.

It is hard to be away from your family and friends when you are going through something like this.  My Dad is doing his prep this morning too, so there is no one to distract me…no one to help me get out of my own head.  And television is an irritating distraction at its best.

My recommendation to anyone contemplating a similar gift:  If you are like me, you will make sure that everyone else in your life is cared for and completely forget that you need some comforting too.  Please bring someone with you who is not an actual participant in the surgeries.  You will need them.  I know, I know –logistics and caring for your children must take precedence at times…but you will feel spread a bit thin so far from home.   You don’t have to be brave by yourself.  Bravery always feels better when you can lean on someone while you do it.

In Honor of Living Kidney Donation

A photo of my fabulous pedicure. 

A good friend and I went to get a spa pedicure before I left.  The result you see before you.  Toenails of the left foot painted orange, while the toes on the right wear a crimson hue.

My husband encouraged me to share my silliness...so here it is for all to see.

The Elusiveness of Sleep

Yesterday was simply exhausting.  I think that it might help if I could sleep a bit better—but that does not seem to be attainable at this time.

Dad and I left his house around 6:45 or so and headed to Albuquerque.  My Dad dropped me off at the front entrance and headed to an appointment with his Transplant Surgeon.  I sat in the waiting room just outside of the pre-anesthesia screening area and passed the two hours before my scheduled appointment by catching up on email and writing a quick blog.  It was quite difficult to try and sum up a few days experience and then type it into my iTouch.  I love my iPods—I really do, but I have a love/hate relationship with its predictive text.   Ninety percent of the time it is a gift; it’s that ten percent that is maddening.

After Dad’s appointment, he joined me in the waiting room for his screening.  He needed to do an extra EKG and Chest x-ray as well.  The pre-anesthesia screening was more of a medical history questionnaire writ large.  I cannot remember the last time I had to answer so many questions.  Oh wait, I do remember.  It was when I was doing the initial screening for this entire Living Kidney Donation. J

Next, we met with the Transplant support team.  The team consisted of the Pre-Op Transplant Coordinator, the Post-Op Transplant Coordinator, and two Transplant Social Workers.  Truly lovely women!  They walked us through the entire procedure (for both my Dad and me,) walked us through the recovery process, answered all of our questions, and then gave us a physical tour of the facilities.  There was a great deal more that I didn’t know.  Here is what I learned that was new to me:

v  Dad and I will have to separate just after we check in on the morning of surgery.  He will go to the third floor to do his prep and I will go to the first floor for mine.  I always understood that we would have to separate at some point—after all, his surgery must follow mine.  I just didn’t realize that it would be so soon.

v  My surgery will be longer than my Dad’s.  Mine should last about four hours, with the biggest bulk of time going to the assurance of proper positioning.  They will be positioning me on my side so that most of my organs (intestines, colon, etc.) will fall away from my kidney with the assistance of gravity.  Since the procedure is laparoscopic, they will need to pump my body cavity with CO2 so that their equipment can travel around with no difficulty.  This will mean significant gas pain until my body can collect it and expel it. 

v  My husband will be able to see my father before he can see me.  Why?  Dad’s surgery is shorter (about 3 hours) and he will recover in the Adult Intensive Care Unit (ACIU.)  This means that he can have visitors about 45 minutes after surgery.  For me, the surgery should last up to 4 hours and end in my going to a closed Recovery Unit for up to 2 hours.  Steve will not be allowed to see me until I make it to my room on the surgical floor.  This has upset my husband, but I don’t make the rules.  They must have an important reason for this restriction.

v  Dad is going to have a central line put in his Internal Jugular.  It allows the medical staff easy access for medications and frequent blood draws.  He will look a bit like Frankenstein—and that is important to know ahead of time.  I cannot imagine seeing him, following his surgery, had I not known what to expect it.

v  We are not allowed to be in a shared hospital room.  When the team has allowed this in the past, the Donor and the Recipient have difficulty focusing on their own recovery and instead focus on their worries about the other.  I understand this—because that is what I would do.

v  For pain management, I will have a morphine drip and Dad will have a pain ball (dripping pain medication directly along his incision.

v  I will be allowed to visit my Dad whenever I feel up to it.  I am telling my body that I need to be ready on Thursday night.  We shall see if it listens.

v  The “after care” felt similar to what I already knew.  They just filled in the details.  I will get fatigued easily and need to take frequent naps.  This should improve around 2 months post donation, but not return to normal until around 6 months post donation.

      I will have restrictions on lifting         for 6-8 weeks.    Ten pounds is the limit.  This means that I will not be allowed to vacuum, dust, mop, or even put up dishes.

      I will be allowed a glass of champagne whenever I feel up to it.  There are no restrictions there.

      Lastly, there should be no immune suppression—so I will be able to hang out with my young students (aged 2 ½ to 6 ½) with no worries.

It is no wonder I felt so tired at the end of the day.  It was a lot to take in.

Today my Dad and I had lab tests (pre-surgical chemistry panel and cross-match) at the hospital.  Then Dad had an appointment with the Transplant Nephrologist.  He was extremely informative and went to great pains to explain what Dad can expect after surgery.  It will take me another night to process everything that I heard during that meeting.

Right now, I am waiting for the Magnesium Citrate to do its bowel prep magic.  That will be this evening’s entertainment.  To be repeated again in the morning.

Hopefully, sleep will belong to me tonight.

Exhausted!

As I sit before my computer, thoughts swirl and swoop in my brain. It has been a really long day.  Between the early drive to Albuquerque, the multiple meetings, the lovely meals with my Dad, and a number of shopping adventures to collect all of the clear liquids and other supplies that will be so necessary (starting tomorrow for me and Wednesday for my Dad,) I am just completely worn out.

Many good things have come out of the day.  I feel that I have a much clearer image of what the surgery and recovery should be.  I figure that the more details that I know, the better the picture will be as I talk to my body about the procedure. 

Talk to your body you ask?  Yes, that is what I said.  I believe that the more that my subconscious knows, the less worried and over-protective it will be.  It is like when someone walks up behind you and puts their hand on your shoulder.  If you know that it is coming, you are less likely to jump out of your skin and/or deck them (fight or flight response.)  I don’t want my body to fight any of this.  I need it to spend its energy on keeping me healthy and calm during the procedure and healthy and healing afterward.  In this way, knowledge is power.

A Roller Coaster of Emotions

I sobbed when I dropped my kids off at my friend's house. I cried when I left my husband at the airport. Then I teared up thinking about how lucky I am to have such amazingly supportive friends and family. Tissues were heavily used that day.

Then, I got on an airplane and flew to Albuquerque, NM. A notoriously anxious flyer, I was surprised that I had absolutely no trouble (even with heavy turbulence.)

I got off the plane and was elated to see my Dad. He looks good, but I can tell that he has been losing ground. The timing of the surgery is perfect. He needs this kidney.

I enjoyed spending two days with my Dad and his lovely wife, June. We spent the time as if taking a collective breath before the plunge that this hectic week will surely be.

Sitting in the waiting room, readying myself for the pre-anesthesia screening, I am reflecting on the joy that this gift will give to more than just my Dad. Generally relegated to just praying when someone is ill, I am actually able to do something this time. Many, including myself, will be better for it.

More to come...

What happens if they drop your kidney on the floor—and other odd questions about Living Kidney donation:

“What happens if they drop your kidney on the floor?” asked my daughter as she worked to squeeze the last question from her brain before going to sleep.  I stifled a laugh, and since this had not been a laughing conversation, I tried my best to offer a thoughtful explanation of the care that the surgeons and their support staff would be taking with my precious kidney.  With the bedtime ritual becoming dangerously long, I tried to wrap up the 40 minutes question barrage while also understanding that her fears need answers. 

Her questions are valuable for a ten year old trying to figure out, not just the logistics of Living Kidney Donation, but what it is going to feel like for her.  She is worried that she will feel lonely and disconnected from us...even though she will be with her grandparents and brother.  To her, we will be so complicatedly far away.  It is the hardest part for me too.

For everyone, this has been a hard couple of weeks.  It seems that the closer I get to the actual surgical date, the squirrelier everyone around me becomes.  This has been doubly true for my family. 

I spent a few days asking myself, “Why now?   They have had over a year and a half to get used to the idea.  It is not like they were just informed of my choice.  They were even a part of my original decision.  They have been with me every step of the way.”

The truth is that they had been logically, emotionally, and physically with me for all of the initial decisions (and some of the testing)…but they had not been living within my skin (and active mind) for all of the intervening days.  They have not been thinking about my Living Kidney Donation every day for the last two and half years.  They were bound to hit an emotional wall. 

During the last two weeks I watched as little light bulbs turned on in the minds of my family.  Helping answer questions for my children (and my young students) has been relatively easy.  It has always been my goal to give them all of the factual information that they can handle, and they seem relatively eased by it.  Adults seem to have more difficulty with the facts.

I negotiate today’s mine field, littered with the new emotional connections that my family has made to my choice.   I try to walk respectfully alongside them as they process.  They have given me tremendous support.  I wish to do the same.

So, I have my plane tickets, hotel reservations, a jam-packed medical itinerary for the days preceding the surgery, a large bag full of books (hoping to feel well enough to devour,) my laptop, a stack of favorite DVDs, and my iPod.  My husband will fly in the night before the surgery to be my support. 

Most of the major planning is done.  All that remains is the execution of those intricate plans.  In less than two weeks, I will be flying over the sublime beauty that is New Mexico.  I look forward to the surgery—because that date will mark the beginning of working toward a new normal for me and for my Dad.  After this long journey, just the thought of returning to normal (even a new one) sounds like bliss.

Transplant surgery in one month

With the transplant a month away, I have discovered that my lists are beginning to grow lists.  I had hoped that my paper (and iPod) inventories would be filled with check marks or black cross-out lines showing me all that I have done to prepare for June’s events.  Instead, I am finding that the number of items that I have hastily scrawled in the margins is keeping ahead of the embellishments marking each item’s completion.  Such is the life of a busy Mom, Writer, and Teacher.

I received a call from my Dad’s coordinator this week.  She is in charge of the “event planning” leading up to the big day.  She emailed me the schedule on Friday.  Dad and I will have three days of lab work and appointments (with the Anesthesiologists, Surgeons, Nephrologists, and Transplant coordinators) in the days prior to the surgery.  All of this was expected and really not a big deal.  For some reason, the sheet harmlessly entitled “Donor Diet Instructions” hit me with a sickening smack.  During our days of appointments, Dad and I will also be required to begin our liquid diet.  Can you already understand where this is going?  Unfortunately, I did not. 

The request of a transfer from a solid to a liquid diet signals that Bowel Prep is on the horizon.  So for one evening and the following morning, I will be drinking chilled Magnesium Citrate and living in the bathroom.  My Dad will be doing the same.  Not what I call fun.  My husband said, “Just take your lap top and watch some of your favorite movies while you are in there.  Make it a movie marathon.”  Not sure that I want to associate my favorite movies to the particular experience, but I understand his sentiment.  It is a truly small price to pay to give someone I love something he needs.

Attitude adjustment commencing...

Bravery

Bravery is defined in the Encarta Dictionary of North American English as: great courage—courage in the face of danger, difficulty, or pain.

As my Dad and I inch, ever closer, to our June 9^th surgical date we seem to have different ways of approaching our upcoming life alterations.  Dad is hard at work in New Mexico, trying to put off the logistical junk that comes with an entire month of preparations and a summer of convalescence.  Since I have children, and live 1,270+ miles away from where we will be having surgery, preparations and logistical planning has been my copilot for this entire process. 

Needing to step away from the logistics and have a bit of fun, I went to the most talented hairstylist in Indy, Bill Kurker, and had him add a bit of his expert color to my hair.  I wanted orange and red, in honor of the National Kidney Foundation and their continuing quest to help those tackling devastating kidney diseases.  He created an insanely perfect shade of red-orange.  The color is gorgeous, and yet something I would not have had the courage to try before yesterday.

Amazing what a bit of bravery in one part of your life seems to do with your entire perspective.  In a little over a month, I will be a Living Kidney Donor— and although I have never been one to shy away from challenges or adventure, I have not always sought out every opportunity for it.  Ten years ago, I would never have dreamed of highlighting my hair a vibrant shade of flame red-orange.  Today, it seems preposterous that I wouldn’t.  

So what is the source of this sudden courage?  Why have I written two novels in the last year after a lifetime of writing and getting nowhere?  Why have I started a blog that shares so much of my very personal journey?  Why am I coloring my hair luscious shades of crayon colors?  I would have to say that it has been quite gradual and, therefore, quite natural. 

I started out twenty years ago by becoming a vegetarian*.  Stuck my toe in the water with that one (especially in Indiana) and discovered that it was exactly what I needed to do for me.

(*Important note to my readers: I am not a dyed in the wool, no one should ever eat animals kind of person.  I do not eat animals and it is my personal choice.  I have chosen this way of eating to be what is best for my body and for whom I am as a person.  It is a wholly moral decision for me, and as such contains no judgments on the choices of others.  Some of my favorite people in the world are true carnivores and I would not have them any other way.  Their food choices are their own—and are no better or worse than mine.)

The next bits of bravery showed up in my career choices, finding a great man to share my life, giving birth to two children (anyone with children understands what courage it takes to be a parent,) more schooling, teaching, and all the while striving to be my best self.  Some of my most introspective discoveries have required the most unimaginable bravery.  So donating one of a great working pair of kidneys to my Dad seems like a walk in the park. 

Still, there are days that I feel like I don’t have any courage at all.  Those are the days that I wish not to have those difficult conversations, or spend two hours online trying to find one more document that will allow my children’s caregivers to take them to the hospital should something go wrong while they are in their care.  I want to just stay home, take care of my 16.5 year old dog, hug my kids, and not endlessly worry about how they will be when my husband and I are out in NM.  But those are rare days and only when my energy is low.

Those days give me a glimmer into why people will often say, “You are so brave to go through all of this.”  The Living Kidney Donor knows that the end more than justifies the means.  Yet we also know that we are intentionally having major surgery to accomplish our goal.  Pain and recovery are right around the corner.  Who chooses that?

Someone who is brave will choose that.  So, I guess that does describe me.  All living donors risks bits of themselves so that someone else may have an opportunity to have the life that they are meant to have. The men and women in our Armed forces do that each and every day. 

For them and for all who are brave at heart:

“Risk

more than others this is safe,

Care

more than others think is wise,

Dream

more than others think is practical,

Expect

more than others think is possible.”

Cadet Maxim from the United States Military Academy at West Point

Nesting

My children and I are on Spring Break this week.   Although we have collectively decided to spend at least half of our vacation relaxing, we have also been busy visiting family, touring museums, and hiking in the family’s 200 acre woods.    Even with all of this lovely activity, it has been an exercise in futility to act as though the impending kidney donation is not looming large in my thoughts.  I am a planner…and for some reason planning begets cleaning.

What?  Yes, I said cleaning.  The truth is that I hate to clean.  It is not the deep loathing kind of hatred, just the irritating “Why would I spend my time this way” sort of disgust.  I do clean every week…just like I pay my bills every week.  It is just not something that I generally enjoy.  Not so this week. 

As a mother of two, I know this feeling well.  About two months before each of my children were born, I spent days scouring every surface in my house with anything that might help to establish a blisteringly clean environment for my growing baby.  As I inched closer to delivery, I became even more frantic in my need to prepare and clean.  I assumed that hormones were creating this inborn necessity, making me a bit nutty yet linking me to every other soon-to-be Mom on Earth.

So what is my excuse now?  I am no longer creating an entire human being out of my own body’s raw materials.  I am simply donating a completely formed organ that has been used since my own birth.  Why is this sending me into the nesting mode?

Perhaps it has more to do with the logistics involved.  When each of our children was born, so many plans had to be formulated.  With our first child, it was all about childbirth classes and designing a birth plan.  My husband and I worked hard to learn all that we would need to bring our daughter into the world in the least medicated way possible. 

Fast forward another month and I was on bed rest for the remainder of the pregnancy…just hoping to hang onto her until she was fully cooked.  Two weeks past her due date, I had to throw our entire birth plan out the window.  After an emergency c-section and 24 hours in intensive care, I was simply grateful for a healthy baby.  The loss of the birth plan was completely forgotten in the sublime beauty of meeting the creature that had been kicking me for months. 

I got a real sense of my own power during pregnancy.   My husband and I both contributed genetic material to initiate the construction of our babies, but the site and raw materials for this immense building project came from me alone.  Whether or not I delivered my own child or needed help—I was still an amazing woman.  I had never made anything that made me more proud.

My pride doubled with the birth of our son.  Again, I was unable to deliver without help…but I had been through this before.  A healthy baby was my only goal and we were blessed once more.  His birth required more planning, because he had a big sister that needed to feel like his entrance into our family was as much of a blessing as we did.  I sacrificed many of my own comforts to ensure that she was cared for—spending time with her Daddy and many loving grandparents.  I think that is why it feels the same.  When something is eminent and yet still so far away, it is difficult to prepare.  You picture it in your mind and try to plan for all possible contingencies.  Then the day comes and all you really need is healthy outcomes for all involved.

So I will nest for the remaining months and understand that I am doing the only real planning that I can.  I will have a sparkling house and on the day of the surgery I will give it all to the universe and the hands of the surgeons and other caregivers dedicated to rendering a positive outcome for my Dad and for me.

For others going through this experience, let me wish you, “Happy Nesting!”