Friday, June 9, 2017

Transplant tale continues with look at the "swings and arrows"

Editor's Note: Three weeks ago, we described our journey up the transplant list at Scripps Center for Organ and Cell Transplantation, a world renowned facility luckily 10 minutes from our San Diego home.  We detailed the 19-month process leading to the midnight call that a donor had been found. Now -- four weeks from the May 13 surgery -- we continue the complex story of recovery with a look at the "ups and downs" and the caregiver's essential role.
From left, writer Rick Cosgriffe, Cookie's brother, with
Bruce Keller and Christene Meyers at a play. One of
the important steps in recovery is returning to routine.

SURFER VOWS TO CATCH A WAVE SOON, ENCOURAGES RESPECT FOR CAREGIVER 

 STORY By CHRISTENE MEYERS
PHOTOS By BRUCE KELLER


WHAT WE LEARNED during the wait for a donor is too much for a single article. Friends have suggested a book, and through this blog, we've had an offer from a publisher! What we're learning during recovery is even more complicated.
Cookie, Nick and Nora, at the beach.  Keller's
and Cookie's routines include the ocean and
theater, and exercise continues to be critical.
Salient points include:
* There will be moments of exhilaration and release, as well as moments of despair and frustration. All normal, textbook reactions to the trauma of transplant.
* Moods will swing -- both of the recipient and the caregiver. Fatigue and exhaustion play into this; be kind to one another.
* As our dear and brilliant hepatology doctor Catherine Frenette says, "There is no road map. Each case differs. Things will go off the track.
* Achieving a balance between the anti-rejection drugs and the immune system is tricky. The drugs compromise the immune system. We had a broken tooth and other dental complications, so we have had to deal with infection and visits to two oral surgeons. We have more surgery next week -- and the transplant doctors and oral surgeons must collaborate on the right antibiotics and anesthesia.
* Return as much as possible to "favorite things" and routines.  This includes for us, weekly plays and concerts and daily trips to the beach for exercise and rejuvenation.
It's too soon for the surfer to return to his board, but in one
more month, Keller's surgeons have given him thumbs up
to return to his daily bicycle rides. Soon he can drive again. 



FAMILY HAS meant everything to me, and having my siblings here has been a godsend. Reflexology treatments, acu-pressure and reiki healing were my sister Olivia's gifts to Keller. Brother Rick and Keller went running and biking. Sister Kelly Misha continues the massages and walking time with Keller.  Family also provides good humor, company and a spell-off for the caregiver.
I am a patient, roll-with-the-punches kind of girl.  Through the illness and loss of two husbands and two sisters, parents, grandparents and dear friends, I've learned that life is a gift and each day precious.  I've also learned the insides of ICUs and operating theaters, and I've seen as many videos on surgery as some medical students.
NOTHING, HOWEVER, prepares  a person for the unexpected.  Who knew a tooth would break, and that the dental implants of two years ago would cause trouble.  But the tricky balance of anti-rejection drugs and immune system are carefully monitored and adjusted.
A Father's Day party is planned next week, with longtime
friend, Jesus Soriano, as a farewell to another longtime
friend, Carlos Montero, who is returning to Ecuador. 

Jambalaya, gumbo and curry were all cravings
for Keller during his first month of recovery.
Good thing Cookie knows how to cook!














A return to "normal" life for the
two included a media day invite
to SeaWorld, and sea-inspired
donuts to toast the 3-week mark.
And as Dr. Frenette predicted, unexpected problems arise with each person; each transplant patient has his or her version of road bumps. Deal with it -- and we did and are.
WE WERE lucky because we were 19 months from diagnosis, to being officially listed,  to the transplant itself. Some people are on the list five years. We are forever grateful to the family who donated their loved one's organ. Through the continuing travail, these tips helped us.
* Keep focused. Maintain priorities. Don't sweat the small stuff. Who cares if you don't get the dishwasher unloaded before you fall into bed exhausted. Even in our pre-transplant time,  we hired a housekeeper and she's a joy and a boon. We love our Yolanda.
* Let people help you.  Chances are your folks will be eager to lend a hand.  Let them!  My family stepped up to the plate with generous gifts of time, talent and optimism.  Neighbors and friends have fed the Yorkies, walked them, looked in on the house, offered a meal or a trip to the grocery.
Nick and Nora above La Jolla Shores.
* Take time. The care giver's journey is a taxing one. I kept up my writing assignments and Jazzercise six days a week. It's essential to my mental health and my own well being.
Cookie "suits up" for
her beloved Jazzercise
* Animal World. We love our Yorkies.  Nick and Nora are part of the healing.  Nicky sleeps with Keller during his naps and Nora stays close to Cookie. They're a comfort and a joy, an essential part of the healing.
* Above all, keep it "normal" as possible. Roll with the punches -- and there have been a couple to the gut,
including a nasty fall for "Nurse Kick-Ass," who reminds herself to slow down and stay in the moment.
Nick, Nora and Keller mark one month out
from the transplant, at Torrey Pines Beach.
The massive incision is healing, the meds are balanced, and while doctoring is a huge part of our present world, we take time to be together at the beach, for exercise and at the theater.
We continued our Friday date nights right up to  the call which came on a Friday. We missed only two weekends of play openings.  We're back on track with that and we've kept our senses of humor.
Even when we our travel was shortened to 3-hours away from Scripps, we found new fun places to go nearby.
As for "Patient Patient," he says, "My future's so bright, I have to wear shades!"

NEXT UP: As
we've stuck closer to home these past months, awaiting the transplant, we've rediscovered what we've known for years -- that California offers a world of engaging diversions. Outside our window, a family of kites have been hypnotizing us with the nesting.  Two fabulous productions have entertained us -- "Damn Yankees" by San Diego Musical Theatre at Spreckles, and "The Spitfire Grill" at NorthCoast Rep in Solana Beach. What a time for theater in our lives -- at the clinic, on the boards and out our window. We're remembering to explore, learn and live and hope you'll consider organ donation -- a gift which changed our life.

6 comments:

  1. Red Lodge ReaderJune 9, 2017 at 6:54 PM

    Wow! This makes my knee replacement look like a walk down main Street. What a ride you two are having. Thanks for vivid sharing.

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  2. Two tough Cookies, seems to me. Engaging take well told. Love the photos too.

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    Replies
    1. Well said indeed! Good cookies for sure!

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  3. Philly PhilosophersJune 10, 2017 at 1:33 PM

    We just sent this to our son-in-law and daughter, who are awaiting transplant also...same Hep C saga, harvoni and now the wait. This is so encouraging. You have done a wonderful service to the thousands awaiting transplantation. THANK YOU!

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  4. Please please get this into a national transplant journal or magazine. The quality of the writing is superb and the personal angle endearing. Wonderful read.

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  5. Far-away cyber friends in ChileJune 16, 2017 at 11:29 AM

    We do not know this couple personally but are following their remarkable and often funny take. To retain one's humor in the face of such trauma is true and amazing grace.

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