Transplant Dating

Ten days post surgery I asked our transplant doctor if we could go out on a date.  "I don't think this is appropriate.  First I don't date clients and you realize you wife is sitting right here" she exclaimed.  I'm sorry doctor, I meant is it OK for me and my wife to go out for a bit.  After a good laugh, she advised "I don't see why not if she feels up to it, but be careful about her activity level, exposure to people and food safety."   So dancing might not be the best idea for now?  What about out to eat?  How about a movie?   She replied "a movie is likely the best choice because we worry about bacteria.  As long as you wear your mask and don't eat the theater food, you should be fine. Don't choose a side busting comedy either, your incision is still fresh.  But if you choose to sneak into the back seats for smooching, you will have to get good at kissing through a face mask."  I appreciate a doctor with a sense of humor.

So off to the movies we went.   It was good to get out for a while and feel like real people for a change.  But going out with a suppressed immune system makes you hyper-vigilant of folks around you.  My wife wears a mask and maybe I should too because I can't afford to get ill as I am her primary caregiver.  If I come down with a cold I must leave the casita and ask somebody else to take over.  While going out my senses were heightened like a hawk on its prey.  I surveyed the crowd for sniffles, coughs and signs of bad hygiene.  You might as well carry around a hand sanitizer fire hose to extinguish all the bacteria in your path.  Much like a protective daddy taking his newborn out, I was protecting my wife and kidney daughter from the world.

We went to see Like a Boss.  It is a comedy, albeit not a very good one, about two close friends running a cosmetics business together.  They value their friendship over the business, but it seems to get in the way.  At the end, their friendship rises victorious as they are willing to give it all up if it means losing each other in the process.  It's much the same for couples when one gets sick. Nothing matters more than keeping your love and friendship secure.  Jobs, tasks, careers, money, to-do lists, all get thrown out the window when illness sets in.  Your focus is on healing, on helping your partner get well.  Everything else becomes secondary.  We were like those two good friends trying to get by with a failed business/kidney as best as we could, recognizing our relationship trumped everything else.  Daily dialysis, special meals, all the medications, lots of blood-work and plenty of doctor visits.  A kidney transplant puts all this behind us.  We will still get regular blood-work and still see the doctor.  Our diet will return to normal and we'll have more freedom to travel and enjoy the things we love.  Most importantly, it means many more years together.  A luxury we otherwise could not have predicted in our future.

It was good to go out and feel normal for a change.

Transplant Casita Living

I have a friend in S. Korea that jokingly told me his country's medical practice encourages hospital stays as a way of generating revenue.  Although we muse at the goals of modern medicine, at Mayo Clinic Hospital, after a transplant you are released as soon as possible.  There are sick people there and even though you just went through a major surgery, you are healing and can't afford to become ill.  Immediately after surgery your immune system is suppressed.  So a simple illness like the cold or the flu can be catastrophic. Mayo has on-campus healing homes for transplant patients.  They are designed to get you up and around emulating normal living as soon as possible.  The facility is called the Help In Healing Home.

Help in Healing Home is an affordable place to stay, near Mayo Campus and with recuperation in mind.  You have your own room and bath, but meal preparation, eating and living areas are common.  This is because the designers of the facility want you to get back to a normal routine as soon as possible. They don't want you sitting in your room, watching television and snacking on potato chips in bed.  Each patient is required to have a full-time caregiver and it must be somebody you know like a spouse, sibling or good friend.  No food is allowed and there is no television in the room.  They want you to get out of bed, eat, and if you desire, to watch television with others.  Patients here have been given the gift of life via a transplant or other restorative treatment.  Routines have been disrupted and casita living is now the new norm.  Transplant patients stay here for five to six weeks.  Cleanliness is essential.  Everybody is required to contribute.  You cook and clean likely better than you would at home.  Cloth hand towels are banned in common areas as they can spread infection.  Antibacterial soap and hand sanitizer is everywhere.  No alcohol or illicit drugs, and outsiders are not allowed in the casita, not even in the common areas.  This home away from home was designed with the patient and healing in-mind.

It's peaceful here.  Casitas although very close to the main hospital campus, are perched on the edge of the Sonoran desert.  Large picture windows adorn the living spaces where coyotes, roadrunners and desert cottontail rabbit sightings are frequent.  Comfortable tables and chairs lure us outdoors to enjoy the fresh desert air.  Although the mid-January crisp air can be a little too fresh for most.  A fireplace sits in the communal living room inviting late-night chats when sleep is fleeting due to immunosuppressant side effects or post-operative incision pain.

Disease does not prejudice.  Cancer, liver and kidney failure don't care if you are Bill Gates or Mother Theresa.  Folks come from all over the world to stay here and from all walks of life.  Our youngest resident is 19 while the oldest is - well let's say older than me.  Like immigrants from a distant land, people here arrive scared and weary.  Scared because the future is unknown and weary due to surgery followed by a hospital stay of sleepless nights, midnight meds, bells, whistles and vampire visits at two o'clock in the morning for vital blood tests.

Although the casitas are designed to mimic home life, it is a bit different.  Life here is similar in the sense you or your caregiver must take care of you and the household. But at the same time, it's like living with a constant stream of houseguests.  You can't get up and make coffee in your underwear, nor can you watch television till dawn during those sleepless nights.  But at the same time there is always somebody to talk to.  Casita residents share space, but also a common bond of healing.  Living with other residents near the end of their tenure here give new residents hope for a healthy future.  We talk about things you would never bring up during normal conversation.  How much are you peeing now? we ask as a barometer of understanding where we are in our own process.  After comparing urine output, the conversation slips into learning about the picture of another's home life.  People who feel ill want to get better and sometimes a discussion with a person in the same situation is helpful.  You make friends here.  You listen to each others stories and what life was like leading-up to "the call."  Everybody's routine was rapidly disrupted and what they want most now is to get back to their own home, family, children and pets.  They want to make life as if nothing ever happened other than having an organ transplant.

Patients here only have half a face.  Masks are prevalent and touching is discouraged to avoid the spread of infection.  If you can't contain yourself and really need a hug, it is followed-up by huge doses of hand sanitizer.  Food safety is mandatory.  Kitchens are kept squeaky clean and residents are expected to maintain sanitary conditions.  No more dishes soaking in the sink.  No sooner than you have finished your last bite, dishes are rinsed and summoned to the hollows of the dishwashed where they are cleaned and sanitized like surgical tools, ready for next use.  Like a college dorm sans beer, each refrigerator shelf is assigned to a resident and expiry dates watched like a hawk surveying its prey. Offending morsels are whisked off to the refuse bin avoiding a potential refrigerator contagion.  Residents clean countertops and sinks with anti-bacterial sprays, plates and utensils are single use only.

As we sit and count the remaining weeks and miss our dogs. I mean really miss our dogs.  We understand this is temporary.  We count our blessings, put life in perspective and set priorities.  In between testing and doctor visits we have time to talk about what matters.  Plans for the future once stifled by kidney disease are now breathing with new life.  We discuss how we will celebrate our 30 year anniversary in 2023, places we will visit in 2020 and give thanks for a future free of dialysis.

Life is good.

Congratulations, we have a Kidney for you

We are congratulated a lot lately.  These praises are a common expression when meeting with our transplant team.  After 59 years of fighting with Type 1 diabetes, in 2018 my wife went into full kidney failure.  We spent most of one year on peritoneal dialysis before she got the call.  It came suddenly and unexpected on an otherwise uneventful Sunday night.  I was sitting on our rooftop patio, enjoying the three-quarter desert moon with our Great Dane Miss Stella Rose.  Stella is our faithful nighttime sentry who peruses the neighborhood on this rooftop perch ensuring our safety.  Then suddenly the big one hit.  The news came like a massive earthquake, without notice, earth shattering and unexpected.  But it was good, yes very good news.  Hello - this is the Mayo Clinic - we have a kidney for you.  Wait, did I hear you correctly?  Am I dreaming?  You just said we have a kidney?  Like an expectant dad I ran into the house, excited, nervous, full of anticipation and delight when I gleefully cried-out "we have a kidney."  The tears of happiness flowing like joyful rivers were quickly interrupted by the ticking clock.  Honey, it's time we head to the hospital, we're becoming new kidney parents.  I was going to be a kidney daddy.

We knew this day was coming but unsure of when it would happen,  How many more dialysis nights to endure.  When could we freely travel again without Levi the cycler in tow?  We were burdened with doubts about the success of peritoneal dialysis.  Having served us so well would PD suddenly fail and quit working?  How much longer could we keep up the 10 hour nightly regimen without infection or exhaustion setting in.  What if I got sick - who would God assign to take over to help my wife.  Then, on that peaceful Sunday night on top of the roof in view of a bright southwest desert three-quarter moon, God provided the answer.  Stop everything, put your life on hold, set the kidney evacuation plan in action and head to Phoenix.  Yes that's right, we had a kidney evacuation plan.  Getting a kidney is no different than preparing for evacuation.  You have to make a sudden departure from what you are accustomed to and enter into a new life.  For a while at least.  It disrupts your routine, and suddenly there is nothing more important than heading to that predetermined safe place to save your life.

We were prepared.  Medications, insulin pump supplies, and essentials were already packed in two plastic bins.  Pack two bags I said to my wife.  One small bag for the hospital with just essentials, like PJs, slippers, something to go home in and make-up.  Make-up because even though we just went through major surgery, a girl still needs to look pretty leaving the hospital.  Pack a larger bag for the next six weeks because you will be living away from home for a while. We called our emergency dog sitter.  Hello, Mrs. O, we need you for the next six weeks, can you come tonight?  Another person puts their life on hold because she knew we were failed kidney refugees having to escape at the last minute.  Fortunately she didn't have anything else planned, and if she did Mrs. O knew this was more important.  The car was full of gas.  We kept it full and maintained in preparation for the 100 mile drive because a ten minute stop for gas could cost us a kidney. Everything fell into place just as planned.  We knew this miracle was more than our careful planning and preparation,  It was God's will and time for us to become new parents of a kidney.  He had to align the stars in the correct order - divide the heavens to accept a lost soul so another can live.  These kinds of things only happen on God's timeline.  We never know why or when, just that He was ready to perform a miracle - and we were ready to accept one.

So now after a week since taking the Mayo Clinic call, I am a proud kidney daddy.  It's been a hectic week for my wife, undergoing surgery, recovery, hospital stay, lots of pain, plenty of waiting, little sleep.  Our loss of rest is now being made up by our kidney daughter.  She's waiting for the right time to awake and greet us with a nice long pee.  In the meantime we continue to pray and sit patiently on our faith in God waiting for the miraculous rivers of pee to flow.