Coming Home

We left on a three quarter moonlit night and returned to a spectacular full moon.  It was as if God was telling us He completed the missing quarter.  He took a soul to heaven and used her kidney to make another whole.  Just like the night we got the call, I sat on the same rooftop perch with Miss Stella Rose and reflected on how much changed in the month away.  Under that bright Southwest moon I realized God has forever changed our future - in a good way.  At the same time, there is another family somewhere still mourning the loss of their loved one who so generously decided her passing would generate new life through the gift of organ donation.


We are in awe of the miracle bestowed upon us.  This once lifeless kidney is now healthy and filled with life giving oxygenated blood.  It filters toxins, balances key electrolytes and provides hormones to trigger the rest of the body maintaining homeostasis. Going pee is now a celebration generally followed by a prayer of thanks.  Prayers for the new freedoms a transplanted kidney provides.  We also pray for the family of the donor.  We pray for peace and healing knowing that in some small way knowing her donation is giving life to at least three other people.

Now we must reorganize and focus on keeping this kidney healthy.  Three liters of water a day, lots of medications and weekly blood tests.  Our bladder is finally expanding so we can go out for an hour or so without needing a bathroom within 10 feet.  We still wear a mask in public places because our medications keep us immunosuppressed for the rest of our life.  We risk serious illness to protect the transplanted kidney from being attacked by our own body.  Face masks are all the rage now.  They are a sign of staying healthy and avoiding potentially deadly viruses.  They come in cute puppy paw prints, paisley and to the disdain of Miss Stella Rose and Lexi, we even have some with cute little kittens printed on them.   Maybe I will have some printed with our Great Danes on the front.

Although life will never be normal for us, we are thankful for what we have.  Undergoing a major surgery such as a kidney transplant is miraculous but it can also be overwhelming.

We will never look a full moon in the same way again.

Transplant Superbowl Celebration

Every other person in the photo underwent kidney transplant surgery between one and five weeks ago.  Recovery did not stop the Superbowl party.  Regardless of who each person picked as their team, they are all winners.   They have been given the miracle of new life.  Transplant was now the reason to celebrate, coincidently it was Superbowl Sunday.   It's time to move on - to seem normal for a change.

A month ago, every day started with a coin toss except the odds were much worse than 50/50.  Would this be my day to endure another dialysis treatment or to be selected for a kidney?  But then it happened.  They picked heads and won.  They got the call and were given the chance to kickoff a new life.  Much like those players on each Superbowl team, they waited for years to join the ranks of the elite who were blessed to be part of this day.  Today they were matched and blessed with a life giving organ from a generous and thoughtful donor.  The outcome of this competition is clear.  All three are winners and their struggle against kidney failure is mostly over.   Now starts the lifelong battle to fight against rejection. This is not a game, it is a challenge of life or death for transplant recipients.

The rules are clear.  Your medication play clock is exactly every twelve hours.  Delay of game earns a kidney rejection penalty flag and could put you in the hospital.  Take care of your health, drink at least three liters of water daily and measure your vitals every morning.   Infractions are unforgiving. Food safety is your defensive strategy.  No undercooked meats or fish - Sushi is banned.  No unattended self-serve food like buffets where an uninformed patron might have used a hand to reach in and taste the sauce thereby contaminating the line with a potentially deadly virus.  Leftovers must be labeled and tossed after two days.  Your own offenses against illness have been compromised by life-sustaining anti-rejection medications.  Much like your linemen defend you from getting sacked by charging viruses emitted during a sneeze, your facemask is your first line of offense.  It should be worn in crowded places where unrelenting illness lurks.  Illegal touching is not permitted.  If you touch a person's hand, this must be followed-up by a dose of germ killing sanitizer before you return your hand to scratch your nose or rub your eyes.  This is how disease transmits and a fumble in this area could cause you to lose the competition.  This is not a game, it is life or death.

Players in this competition give a prayer of thanks every day.  They ask for wisdom to keep up their offense, the strength to put-up a good defense and the blessing of another disease-free day.  Because this is not a game - it is life or death.

Stella and Lexi Have a Conversation

In a solemn moment on the couch the puppy Miss Stella Rose looks toward her more mature sister and asks "Hey Lexi, why has mom been gone so long.  I miss her."  Lexi slowly raises her head, looks intently at Stella and replies "I don't know when mom will be back.  Dad took her away because she is sick.  I heard Mrs. O say she is getting a kidney transplant."  "What is a kidney transplant?" Miss Stella Rose asks inquisitively."  Lexi pauses for a moment and murmurs a guarded reply "It's when people's kidneys stop working and the doctors give them a new one."  Stella stops and thinks for a moment, then asks "But why did she have to go away?  Why couldn't I give her one of my kidneys?  I am a young pup and very healthy."  Amused by her reply Lexi chuckles,  "You are such a puppy, people can't take our kidneys, we are not compatible."

Stella continues her interrogation "Is that why she was hooked to the machine every night, because her kidneys stopped working?"  Lexi reassures Stella "Yes, the machine kept her alive.  But after this transplant she won't need it anymore."  Stella continues her naive queries "Does this mean we won't have to wait outside of the bedroom every night while she hooks-up to it?" Lexi affirms "Yes Stella, once she gets home her life will be back to normal.  But you will have to be careful with her, don't jump on her or try to lick her face, she can get sick if she touches germs.  We all know where your tongue has been."

"Hey Lexi, since I am too young to write,  Do you mind writing a letter to mom for me?"  Stella asks.  Lexi negotiates her reply "No I don't mind, but after this you have to promise to let me nap and not pester me for the rest of the day.  Tell me what you want it to say."

Stella's letter to Mom:

Dear Mom,

Lexi tells me you had to go away to get a new kidney.  Does it hurt?  I remember when I went to the vet to get my surgery for spay and gastropexy - it hurt real bad.  You held me and sang soothing songs to me so I would feel better.  You are such a great mom - I miss you.

I wish I could be there with you to cuddle like we always do and help you feel better.  I promise not to step on you or to lick you in the face.  Lexi tells me this could make you sick - I will be a good girl.  When will you come home?  Is your new kidney working?  Does this mean I can cuddle up with you at night instead of waiting outside the bedroom while you used to hook-up to that machine?  I miss our snuggle time.  You are such a great mom - I miss you.

Don't worry about me.  Lexi and Mrs. O are taking good care of me.  But I worried about you so much that I ate my dog bed.  I'm sorry, please forgive me, but I started thinking of you and could not help myself.  Now I have to sleep on the floor.  Guess that was not such a good idea.  I promise if you come home soon not to chew up your glasses anymore.  I remember how mad that made you.  But you forgave me and still snuggled with me.  You are such a great mom - I miss you.

I will try to be a good girl.  Lexi reminds me every day of your struggles to get better and how I need to grow-up.  I am trying mom, but I really miss you and sometimes I just get wacky in the head and the puppy takes over.  I will try harder if you will just come home.  You are such a great mom - I miss you.

Love,

Miss Stella Rose and Lexi

Lexi's letter to Dad

Where are you?  You left in such a hurry this time and it has been too long.  Just like before you packed two of the bigger bags and this time you took along all mom's medicines.  I saw you put those canvas bags into the car, but this time it was different.  You did not take the machine mom uses every night to stay alive - did you forget it?  How will she survive?  What is going on? I don't understand.  Don't get me wrong, Mrs. O is doing a great job.  She keeps our food bowls full and water bowls clean.  We still go to the dog park every day and our routine has not changed, but you are missing and I am starting to worry.  It's been too many moons.

I know mom is sick and you had to leave to take care of her,  But why couldn't I go this time?  I'd be a good girl.  You need me to protect you from strangers and bumps in the night.  I would just lay in the corner and be quiet while you help her get better.  I'd do my part too and come close to her when she needs reassurance - just like I always do.   I try to help when I can.  I don't understand everything but I sense things you don't.  Like when mom is suffering and hurting, when she can't sleep I stay awake with her at night.  Sometimes she just likes me to lay with her just to give comfort and affection - I am really good at that.  It's been too many moons.

My nights are long and restless.  You usually come home from long trips at night so I stay awake waiting for you.  Evenings seem to last forever.  I keep watch as the moon passes and until the sun comes up.  I listen for your car or the garage door opening.  Yes, cars pass by, but they are not you.  What is going on and how can I help?  I know you need me there, but you had to leave me behind.  I know this is really important stuff because you would not have left in such a hurry. Did you even have time to say goodbye?  It's been too many moons.

My sister Stella misses you too, but she is young and doesn't understand like I do.  She just thinks you are on another vacation.  Stella says you are just fine and sipping margaritas on some beach in Mexico.  She sees my worry and tries to reassure me.  "They are fine" she barks, "let's go play and forget about it."  So I go play, but I still think about why this time was so different and worry something terrible has happened.  It's been too many moons.

Every night I go outside and climb high on the rooftop patio.  I raise my nose high into the heavens and breathe in the night air until my lungs are bursting with scents.  I fill my olfactory bulb with every molecule I can looking for that needle in a haystack.  Like my ancestors have for millions of years I carefully scan for you.  I search the sky for that canine sense of danger just in case it is lurking beyond your doorstep.  I sniff for any trace of you.  Every one of my scent receptors work overtime hoping to catch the smallest whiff of your bouquet.  But you are too far away - there's nothing left and I miss you.  It's been too many moons.

Don't worry.  I am fine.  I will loyally protect the home while you are gone.  I will take care of Mrs. O and my sister.  I know you are taking care of mom.  This is important work - something you have to do.  Just come home soon.  It's been too many moons.

Transplant Halfway Point

Yesterday marked our halfway point.  We have been here just under three weeks and if all goes well will be released on February 14th - Valentine's day.  This point is significant because three weeks ago our life was upended when we got the call.  After the tension of surgery, hospital recovery and getting released from Priscilla the pee hat, we could see our new life at the end of the tunnel.  There is no preset time for our departure, but without complications this marks the halfway point.

Halfway points are significant because they stamp our progress toward a goal.  Hikers feel a sense of accomplishment at the halfway point.  Marathon runners euphorically gauge their stamina against running another 13.1 miles.  The quarter point does not really seem like an accomplishment.  It's as if you really haven't tried, you just started and have a long way to go, you can still turn back.  Mid-way into your journey you realize you are fully committed to your hike or run and are ever more engaged in reaching the goal.  Unlike the hiker or marathon runner analogy, kidney transplant is complete immersion into a new life.  Once the surgeon's scalpel hits your skin and a new organ is grafted into your abdomen, there's no turning back.  You  are fully committed, engulfed in God's plan and you pray for a successful new future.  In the beginning or even at the first quarter, all you can do is follow His plan and pray.

So far ours has been a textbook recovery with no returns to the hospital.  We are very thankful.  Several of our transplant comrades have complications and are remanded to Mayo hospital to undergo additional surgeries from transplant complications.  For us, this is not the case - everything is working according to plan.  We are blessed,  the pee is flowing.  We rely on deep prayer and ask for the rest of the journey to go exactly as planned.

We meet new immigrants arriving for the first time in transplantland.  They arrive weary and scared, not sure of what to expect as they leave the protected confines of the infirmary and begin a five week casita recovery journey.  One naive caregiver greeted me this morning "Good morning my name is Jerald, my brother is being released from the hospital this morning as a new kidney transplant recipient."  He extends his hand in traditional greeting form and looks surprised when I don't reciprocate.  Instead I reply "Welcome, it's nice to meet you, please don't be offended if we don't shake hands here."  "Oh... sorry, yes I guess I will have to get used to these new traditions" as he slowly lowered his hand in remission.  Here in transplantland everybody has a different view on safe hygienic behavior.  Some with mask, some without, some shake, others like us don't.  We err of the side of caution as we are ready to go home and don't want anything to delay our departure.  As the expression goes, It's better to be safe than sorry. 

I trace back the moments leading to this point and sit in awe of the miracles bestowed upon us.  I count our blessings and thank God for our progress so far.  I look forward with faith in His hand on the remainder of our journey.  I find irony in our release date as it is the same day patron Saint Valentine was martyred for protecting Christians while we return to begin our new and extended life.

Goodbye Priscilla the Pee Hat - You Served us well

What goes in must come out.  During the first several weeks of transplant recovery this balance is carefully measured.  We celebrate half-liter pee productions with joy and song.  Output is very important for obvious reasons.  The better your new kidney works, the more urine is produced.  Pee is no longer taken for granted - instead it is a reverent act where prayers for volume ascend to the heavens.  Today we produced enough daily output to retire Priscilla the pee hat.  We initially considered naming it Peter, but considering its perspective from the toilet bowl we decided it should be a girl.  Earning doctor's release from Priscilla was a major goal toward recovery and the dream of finally getting home.  Three weeks more to go, we expect to return to our house on Valentine's day. 

Recovery after transplant consists of blood work three times a week followed-up by transplant team doctor visits shortly thereafter.  It's not like routine lab work at home where you must have blood drawn at least a week or two prior to your appointment.  Here at Mayo you get blood taken at 7:30 am and by 8:30 am the results are ready for doctor review.   Your homework consists of producing daily logs of urine output, estimated fluid input - twice daily vitals are logged and delivered to the appointment.  So far everything is on track for a Valentine's Day release.  We now have the gift of life from a thoughtful donor and must take care of it.  Our routine has changed and things will never return to business as usual. 

Besides the three times a week review of progress with the transplant team, there are classes on how to keep from getting sick.  Transplant recipients are immunosuppressed so the first six weeks are extremely important while your medical team ensures you maintain the right amount of life-sustaining drugs on-board.  Medicine has to be taken regularly and on-time.  Missing a dose could cause you to lose your new organ as the drugs stay in your system for 12 hours only.  Too much and other organs are at risk, too little and you might go into rejection.  We care for our kidney daughter much like new parents hovering over the bassinet watching her every move.  Praying she leads a long and healthy life along with us.  This commitment to her and the required medicines are lifelong.

We are like immigrants coming to a new country called transplantland.  Our normal routines change as we adapt to germ-free culture.   Sushi and buffets are banned here.  Foods must be fully cooked and kitchen surfaces disinfected.  Those soft cheeses and foods we love so much like brie and smoked salmon are off the menu.  Store bought deli meats are heated in the microwave to a safe temperature before making that late night sandwich.  Leftovers are labeled and meticulously tossed after two days.  No more sniff tests to ensure food safety.  There is no room for error here - bacteria is our enemy.  Transplant-life culture believes in regular use of paper towels for had drying, no more cloth kitchen towels.  Hand sanitizer is everywhere.  We don't touch animal feces or live poultry.  People in transplantland although loving and caring individuals do not hug or kiss.  The culture promotes a clean and sterile environment where everybody lives in a bubble and passing through it could be catastrophic. 

What do you say to a friend who really wants to give you a big hug?  Or strangers offering a friendly handshake.  Just as you perfected that European one, two or three kisses to the cheek, these expressions of friendship are now off-limits.  Kissing is reserved for intimate infection free relationships.  Handshakes are OK but must be followed-up by healthy doses of hand sanitizer.  Feel good hugs are not safe for transplant recipients. 

Over time we will figure out this transplantland culture.  In the meantime please don't be offended if we simply wave from a safe distance.

Transplant Couples Therapy

It's not for everybody.  But going through an organ transplant is very therapeutic for a marriage.  You get six weeks away from your home routine and have the opportunity to focus on what really matters.  Your future suddenly becomes unpredictable and scary.  As you watch the surgeons take your spouse into the operating room, it hits you like a brick to the head.  What if I never see this person alive again?  

There's a defining moment in every relationship.  For most it is likely something wonderful and pleasant.   The day you were married, or the birth of a child, maybe that wonderful retreat where you were able to reconnect and rekindle the flame of desire that somehow got lost in day-to-day living.  As your partnership matures, these moments change from great experiences to challenging ones.  Where once we would celebrate a promotion, new home, or the arrival of a puppy, we now revel at the sight of 500ml of pee.  As you age, joyful times morph into painful events like unemployment, distrust, illness, and death.  They eat into matrimonial bliss like termites destroying your home's foundation.  You can't see the damage these life events create but it's there.  The evidence becomes obvious after the damage is done and there's no going back.  You wake up one day and realize, it's time to repair the foundation.

Kidney failure has drawn us closer to each other.  There is nothing selfish about helping another deal with illness.  You get broken down to the basics, to what really matters in life because the alternative is death.  Our kidney disease voyage allows us the opportunity to learn what our relationship is really made of.  Diabetes and associated complications is a "true grit" challenge in our lives where we test our commitment to each other every day.  It gives us a common goal, shared experiences, and oddly enough a mutual vision of transplant and dialysis free living.  I setup Levi the cycler for my wife every night because I understood she had to endure ten hours of tethered entrapment and abdominal discomfort while she is filled and drained with nine liters of fluids.  She looked at this as a chore for me, but really, it was a pleasure to do this for her.  I wanted to give her this special gift every night to show my love and commitment to her and our mutual fight against this disease.  Kidney failure is depressing enough, let alone the degrading treatments patients have to endure.  As a spouse helping your partner through illness it's important to be supportive, loving and compassionate, to give your partner hope and inspire them to keep trying.  Had I known dialysis was inevitable, I would have written my original wedding vows differently.  They would have read "'In sickness and in health, and to setup your dialysis cycler every night." 

We have not reached our goal.  We are not totally in the clear, but this time away has been therapeutic for more than health reasons.  Three days a week we have clinic appointments beginning with lab tests and followed-up by a visit with the transplant team.  This consumes 12 out of an available 168 hours per week. The rest of the time we are together and free to talk about what matters.  To dream about the future again.  Although we miss our dogs immensely, we also understand this departure from the norm is an opportunity to refresh our marriage and renew our promise "to have and to hold until death do us part."  God willing, and thanks to the thoughtfulness of a donor family, this latter part is now postponed for a long time.

When we celebrate our 30 year anniversary in 2023, we will renew our vows.  But this time they will be written much differently.