President’s Message: A Rosy Past

Where has the time gone? Another year has quickly past but that’s not a bad thing if you consider the alternative. You look back at all your accomplishments and feel so great when they outweigh your failures. More than that, you hopefully have a new sense of vigor as you attack your future goals in the upcoming year.

Recently in the transplant community every New Year begins with an uplifting celebration. It starts with being part of one of the most magnificent spectacles that can ever be witnessed…The Tournament of Roses Parade in Pasadena, California. The beautifully adorned Donate Life float gracefully rides in the parade depicting the celebration of life by exposing both donor families and recipients to millions of people across the nation. It is an excellent way to demonstrate the importance of the ‘gift of life.”

We at TSI would like to thank everyone who made it possible to showcase our cause in this event each year. All the pain-staking hours by so many great individuals can never be repaid but can definitely be seen in the results of their efforts.

We are very fortunate and thankful to have another TSI member, Mary Wu, to have been asked to be a rider on this year’s entry.  You will find Mary’s account of her wonderful experience in Pasadena this year in this issue. Lynn Allred of TSI will also share her Donate Life float experiences as well.

Donate Life America has a mantra…”Twenty Million in 2012.” Let’s all get out and do everything we possibly can this year to hit that twenty million registry mark. It saves lives!! Go get’em and good luck!

Frank Bodino
President

Active Teenager Defies the Medical Odds Thanks to Tissue Donor

Case Study: Parker Simpson
Recipient of: bone allograft

In 2006 Parker Simpson was an active teenager, ambitious academically and involved in a number of sports. It was that year, as a high school sophomore, that a sports injury to his ankle landed him on the doctor’s table. Parker had developed osteomyelitis, a staph infection of the bone, in his tibia and fibula. But he couldn’t have foreseen that this was the beginning of a trying medical journey that would test the resolve of both him and his family for years to come.

Parker was faced with possible amputation of his leg several times as a result of the infection. A successive back injury was further complicated due to the existing illness in his bones. He underwent numerous operations to combat the ankle and back afflictions, resulting in a fused ankle and foot, and yet his young body was just beginning its battle to survive.

In 2008, Parker developed pain in his shoulder that he thought was the result of too much weight lifting or lugging a heavy backpack. Doctors performed an MRI and identified a tumor that they presumed to be a result of Parker’s previous osteomyelitis.  Dr. Ross Wilkins of The Denver Clinic for Extremities at Risk told Parker that the tumor required immediate operation. Following the surgery, news got worse.

The tumor was not staph related, but actually osteosarcoma. The bone cancer was Stage 4 when discovered, and had taken hold of Parker’s shoulder joint and moved into both lungs. Within a matter of days, Parker had gone from relative recovery from his previous conditions and a normal teenaged life to intense chemotherapy treatments. “It was like whiplash,” he said.

So Parker’s struggle continued, and he could not have imagined that next the generosity of a tissue donor would lead to the ultimate survival of his arm and his active life.

In order to save his arm, Dr. Wilkins had to remove the cancer-infected shoulder and a large part of his humerus, which he then replaced with an allograft bone transplant from a deceased donor. AlloSource provided the limb-saving allograft. Parker’s shoulder was reconstructed with a metal alloy ball joint.

Parker’s recovery was daunting. The intense chemotherapy required to kill the cancer was the ultimate test of patience and physical strength. But thanks to a community of support from doctors and friends, and his own determination, Parker has today been cancer free for more than 18 months, and is currently a sophomore at the University of Colorado at Boulder.

With the knowledge that he’ll have to be diligent about monitoring his health for the rest of his life, Parker is anxious to seize each day. He is inspired by Boulder’s majestic beauty and has taken up rock climbing, much to his mother’s chagrin. His interests for the future run the gamut from aeronautics to mechanics.

“I know I have endless possibilities now.”

A Gift to Remember

I have always been fascinated by parades.  When I was little and we were living with my grandparents we would walk up to the top of our street to watch the local parades pass by.  Then on Thanksgiving Day as my mother and grandmother prepared a yummy dinner dad, grandpa and I watched the Macy’s Thanksgiving Day Parade on TV.  But my most favorite parade of all was the amazing Tournament of Roses Parade on New Year’s Day.  Even as a young child I was amazed at the thought of constructing such beautiful masterpieces all of living plants and flowers.  I dreamed of being able to see this parade in person one day.

Imagine my astonishment when some 40 years later I was told I’d be going to the Tournament of Roses Parade in Pasedena, CA not just to watch but to ride on the second ever Donate Life float.  Not only would I be going but my good friend Tammy, who had donated her kidney to me 4 years earlier would join me (along with our two husbands).  It was my second kidney transplant and by then the list for a kidney transplant was so long I would have died waiting for a deceased donor kidney.  Diabetes from age 9 destroyed my kidneys and in 1988 I had an experimental kidney/pancreas transplant that cured my diabetes and enabled me to leave dialysis behind as a bad memory.  But 13 years later chronic rejection claimed my transplanted kidney and dialysis was again looming in my near future.  Diabetics don’t do well on hemodialysis so my transplant surgeon told me that I probably wouldn’t survive waiting on the list.  In stepped my friend Tammy to save my life.

From the minute we stepped off the plane in California we were whisked into a whirlwind of excitement from receptions held in our honor to float decorating, judging, some sightseeing to the morning of the parade and the bus ride to the staging area!  What an incredible few days!  One of the most amazing things to me was one of the stories of the history of the Tournament of Roses Parade.  The parade is traditionally held on New Year’s Day every year except when New Year’s Day falls on a Sunday.  In deference to the many churches along the parade route on years that January 1^st  falls on Sunday the parade is held on January 2^nd, Monday.  It is said that because of this reverence to Sunday being the Lord’s Day it has hardly ever rained during the parade.  January 1, 2005 was no exception.  Rain was forecasted and clouds loomed over the parade route.  As the parade started the clouds drifted away and the sun broke through.    About 45 minutes after the parade ended the clouds rolled in and the rain came pouring down.

The most exciting moment of the parade was when our float reached the corner of Orange Avenue and the float made a turn and headed down the hill onto a street filled with over half a million people on either side.  People had started camping out on the sidewalks two days before and now not an inch of concrete could be seen.  What an amazing view turning that corner and seeing a mass of humanity lining the street looking up at each float as it turned the corner.

Then as the parade came to an end the route winded through the side streets of Pasadena and residents of the city sat on their front lawns with a birds eye view of the entire parade.  Children came running out onto the narrow street begging us to throw them flowers from the float.  We had been told not to throw flowers but we couldn’t help to grant one or two requests for flowers from the precious little children running along next to us.

What an incredible time we had.  It was a memory of a lifetime.  The name of our Donate Life Float in 2005 was “Many Families One Gift” and it certainly was a gift to remember for me!

Lynn Allred
TSI Trustee

A Ride of a Lifetime

In July 2011, when I received the invitation from University Kidney Research Organization (UKRO), a Los Angeles-based non-profit organization specializing in eradicating and treating kidney disease through ongoing research, that they had chosen me as their 2012 Donate Life Float Rider for the 123^rd Tournament of Roses Parade, I just about fell out of my chair in disbelief and humbled honor.  I never would have imagined it.  I truly did not understand the full magnitude of being chosen as a Float Rider until I was in the sunny surroundings of California and in the company of the most inspirational and extraordinary combination of individuals I’ve had the pleasure of meeting.

From December 28^th-January 2^nd, I spent my days in a dreamy fog that revolved around decorating the 2012 “One More Day” themed Donate Life Float, dedicating roses to both my anonymous organ donor families, promoting UKRO, media interviews and outreach, float judging, and forging friendships with the most remarkable people.  I was barely able to sleep I was so wired, and bursting with so much excitement as I tried to digest and take in every person, every conversation, and every breath-taking and beautiful moment.  It was more than fitting to me that the theme of the 2012 Donate Life Float was “One More Day” when I wanted so desperately to stop the hands of time so I could take in all these treasured moments.  But, as we as organ donor families and transplant recipients/candidates know, time is something we do not have control of and every minute with our loved ones and on this earth is so precious and often taken for granted.

On January 2, 2012, I was up at 4:00AM after an extremely restless sleep.  I carefully dressed in my Rose Bowl parade day attire, which included a shirt supplied by the New York State Organ Donor Network (my local organ procurement organization) that read on the front “An Organ Donor Saved my Life” and the back had a sketch of the New York State Driver’s License with the infamous red heart indicating “organ donor.  To complete my parade day attire was a sign that read “THANK YOU- I RECEIVED MY KIDNEY 23YEARS AGO,” compliments of New York Organ Donor Network. I was ready to fulfill my role of Float Rider for UKRO!!

I was assigned to the first seat at the front of the float next to a tall gentleman who was a heart-transplant recipient and firefighter from San Francisco.  It was all too amusing that I was assigned to sit next to him when he was the tallest and I was the shortest out of  28 float riders.  I thought I ready to fulfill my Float Rider role, but when I finally sat and the wheels of the towering “One More Day” Donate Life Float began to move, the music began to play, and the crowds of people began to cheer, cry, and scream, I was overwhelmed with emotion.  I was filled with humbled honor, joy, vibrant enthusiasm, and tears.  All my memories of my Dad at my side through my many ordeals flooded me, but then came to a halt.  I remembered waking up from my second kidney transplant almost 17 years ago.  My two organ donor families from my first kidney transplant at 5-years-old and my second one at 12-years-old still remain an unknown mystery to me, but on this ride of a lifetime they were in my head and heart.  I wondered if they were watching, and if they ever thought about who received their loved ones organs.  Would they be proud of all I had fought for to survive and was now giving forward in the organ donation and transplant community?  With the sun shining, the bluest skies, and the tallest mountains in the backdrop on this ride, I could not stop smiling, grinning, and waving on the outside but I could not stop crying bittersweet tears on the inside for both my organ donor families and for my family, friends, and all the beautiful and inspirational people that had blessed and come into my life from my health obstacles and challenges.  As the wheels turned and the deafening sound of the crowds and my newfound float friends overwhelmed me, my life and all this extended time that I have been blessed to have had on this earth never seemed more indescribably small and yet large at the same time

Five miles and about two hours later as the heat of the sun beat down on us my legs wobbled like Jell-O as I was helped off the 2012 Donate Life Float.  I stared at the gorgeous float one last time that had epitomized organ, eye, and tissue donation and transplantation to the world before I shakily stumbled on to the bus that would bring us to a post-reception lunch.  I was quietly pensive on the bus ride with conversations swarming around me.  At that moment and throughout the time that has followed my time in Pasadena I have looked over and over at photos and videos to try to find one single word to describe this incredible experience and the only word I can conjure up is “Indescribable,” for this truly is something that has to be experienced, felt, and lived.

How extremely lucky I have been to experience this ride of a lifetime!  How grateful I am to UKRO, my Dad, my entire family, my friends, everyone and anyone, that led me to this absolutely speechless point in my life.  It was a life-transforming time in my life that I will remember for as long as I live.

Mary Wu

I Am Hope …..in 2012

How many of you are registered organ or tissue donors? Anyone? If you’re on the fence about it, watch this message from organ recipient Glamour Top 10 College Women honoree Jessica Melore; it will definitely give you something to think about.

At 16, Jessica was co-captain of her high school tennis team- and then she suffered a massive heart attack that led to a heart transplant and even a leg amputation due to complications. In 2002, Glamour honored her as a Top Ten College Women Winner for her drive to succeed in the face of all her challenges: she enrolled at Princeton University, interned at Good Morning America, Sesame Street, and New York City’s Lincoln Center, all while advocating for youth with disabilities. We knew we had picked a winner even then, but she’s blowing us away today.

Today is Jessica’s 30th birthday, and to celebrate, she’s working with Donate Life America on their “20 Million in 2012”: campaign, to increase donor registration in state registries.

“I am so proud to be part of Donate Life America’s ‘20 Million in 2012’ campaign,” she says. “Real life stories like mine can inspire people to sign up to be organ, eye and tissue donors, and provide hope to the more than 110,000 men, women and children on the organ transplant waiting list.”

Isn’t her story amazing? Will you sign up to be an organ donor?

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Newest CPR

EVERY ADULT IN YOUR HOUSEHOLD SHOULD WATCH THIS SHORT VIDEO

This is a new CPR technique which is much simpler. This is a very important video regarding the latest CPR procedure. Please watch and forward to your friends and family if you haven’t already done so.

Winter Weather Checklists

Stock up on emergency supplies for communication, food, safety, heating, and car in case a storm hits.

Communication Checklist

• Make sure you have at least one of the following in case there is a power failure:
  • Battery-powered radio (for listening to local emergency instructions). Have extra batteries.
  • National Oceanic and Atmospheric Administration (NOAA) weather radio receiver (for listening to National Weather Service broadcasts). See www.nws.noaa.gov/nwr for more information.
• Find out how your community warns the public about severe weather:
  • Siren
  • Radio
  • TV
• Listen to emergency broadcasts.
• Know what winter storm warning terms mean:
  • Winter weather advisory: expect winter weather conditions to cause inconvenience and hazards.
  • Frost/freeze warning: expect below-freezing temperatures.
  • Winter storm watch: be alert; a storm is likely.
  • Winter storm warning: take action; the storm is in or entering the area.
  • Blizzard warning: seek refuge immediately! Snow and strong winds, near-zero visibility, deep snow drifts, and life-threatening wind chill.
• Download this checklist.

Food and Safety Checklist

Have a week’s worth of food and safety supplies. If you live far from other people, have more supplies on hand.

• Drinking water
• Canned/no-cook food (bread, crackers, dried fruits)
• Non-electric can opener
• Baby food and formula (if baby in the household)
• Prescription drugs and other medicine
• First-aid kit
• Rock-salt to melt ice on walkways
• Supply of cat litter or bag of sand to add traction on walkways
• Flashlight and extra batteries
• Battery-powered lamps or lanterns
  (To prevent the risk of fire, avoid using candles.)
• Download this checklist.

Water Checklist

Keep a water supply. Extreme cold can cause water pipes in your home to freeze and sometimes break.

• Leave all water taps slightly open so they drip continuously.
• Keep the indoor temperature warm.
• Allow more heated air near pipes. Open kitchen cabinet doors under the kitchen sink.
• If your pipes do freeze, do not thaw them with a torch. Thaw the pipes slowly with warm air from an electric hair dryer.
• If you cannot thaw your pipes, or if the pipes have broken open, use bottled water or get water from a neighbor’s home.
• Have bottled water on hand.
• In an emergency—if no other water is available—snow can be melted for water. Bringing water to a rolling boil for one minute will kill most germs but won’t get rid of chemicals sometimes found in snow.
• Download this checklist.

Heating Checklist

• Have at least one of the following heat sources in case the power goes out:
  • Fireplace with plenty of dry firewood or gas log fireplace
  • Portable space heaters or kerosene heaters
• Check with your local fire department to make sure that kerosene heaters are legal in your area.
• Never place a space heater on top of furniture or near water.
• Use electric space heaters with
  • automatic shut-off switches and
  • nonglowing elements.
• Keep heat sources at least 3 feet away from furniture and drapes.
• Never leave children unattended near a space heater.
• Have the following safety equipment:
  • Chemical fire extinguisher
  • Smoke alarm in working order (Check once a month and change batteries once a year.)
  • Carbon monoxide detector
• Never use an electric generator indoors, inside the garage, or near the air intake of your home because of the risk of carbon monoxide poisoning:
  • Do not use the generator or appliances if they are wet.
  • Do not store gasoline indoors where the fumes could ignite.
  • Use individual heavy-duty, outdoor-rated cords to plug in other appliances.
• Download this checklist.

Cooking and Lighting Checklist

• Never use charcoal grills or portable gas camp stove indoors—the fumes are deadly.
• Use battery-powered flashlights or lanterns.
• Avoid using candles.
• Never leave lit candles alone.
• Download this checklist.

Car and Emergency Checklist

Prepare your car with emergency supplies.

• Cell phone; portable charger and extra batteries
• Shovel
• Windshield scraper
• Battery-powered radio (and extra batteries)
• Flashlight (and extra batteries)
• Water
• Snack food
• Extra hats, coats, mittens
• Blankets
• Chains or rope
• Tire chains
• Canned compressed air with sealant (emergency tire repair)
• Road salt and sand
• Booster cables
• Emergency flares
• Bright colored flag; help signs
• First aid kit
• Tool kit
• Road maps
• Compass
• Waterproof matches and a can (to melt snow for water)
• Paper towels
• Download this checklist.

Winter Weather: During a Storm

Extremely cold temperatures often accompany a winter storm, so you may have to cope with power failures and icy roads. Follow these important steps to protect yourself and your family. Although staying indoors as much as possible can help reduce the risk of car crashes and falls on the ice, you may also face indoor hazards. Many homes will be too cold—either due to a power failure or because the heating system isn’t adequate for the weather. When people must use space heaters and fireplaces to stay warm, the risk of household fires increases, as well as the risk of carbon monoxide poisoning. Find out what you can do to protect yourself and your family.

	Be Safe Indoors

Although staying indoors as much as possible can help reduce the risk of car crashes and falls on the ice, you may also face indoor hazards.
More

Be Safe Outdoors

Make any trips outside as brief as possible and learn how to protect your health and safety.
More

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Smartphone, Dumb Security

So your phone can edit a video, but can it protect your data? How wonderful that you can shoot and email a video of your baby’s first steps, right from the comfort of your smartphone. But when that phone is lost or stolen, it’s more than just your sweet memories that are at risk—it’s also your online banking passwords, confidential work documents, even the last year’s worth of texts and emails. Be smarter about your smartphone today.

So your phone can edit a video, but can it protect your data?

Sure, smartphones make communication easier. Part central computer, part electronic valet, they make troves of information—from War and Peace to your grandma’s birthday to a restaurant reservation—available at the touch of a fingertip. These mighty minis even have the power to change lives: Smartphone data has been used to clear accused people of serious crimes, and police have used iPhone geomapping to track down stolen cars with the device still in them. Smartphones also keep users in touch with friends, relatives—and, unfortunately, hackers and thieves.

What does all this mean to the average consumer or business user? Simple: It’s time to stop thinking of these petite but powerful machines as phones and start protecting them like computers.

There are various security options—and weaknesses—in the most popular smartphone models and apps, but a few basic tips and tricks can immediately up your phone security game.

First is simple common sense. What information is on your smartphone? If you access a Gmail account or online banking, are the passwords saved into the apps? Do you read sensitive business documents on your phone? Do you have images of your Social Security card or passport? Such files can be a boon if you lose physical documents overseas, but what if your phone is stolen? And those falsely accused folks cleared of criminal charges? It was erased data that saved them. An expert (good guy or bad) can recover voicemails, texts, emails—any kind of key swipe—from as long as 12 months ago.

The first step to securing a smartphone is to make a physical list—pen and paper, people—of all accounts and documents (or types of documents) you access on your phone. Remove anything nonessential—do you really need that client roster loaded with billing info?—and cross it off the list. Put that list in a safe place, such as a home office safe or safety deposit box. If your phone is lost or stolen, you’ll be glad you have it.

Then remove all stored login names and passwords (some of which may have been autosaved by your phone) for apps and web pages. The extra four seconds you spend manually entering that information at each login will save hours of headache if the phone is compromised.

The second line of defense is encryption, which essentially scrambles the data on your phone’s drive, only allowing access if the correct code is entered. It’s more sophisticated than a standard phone lock, because the data on the actual drive is changed—thieves can’t simply pull the drive or run a password breaker to access it. (Even still, you should always have your standard phone lock ON.) Most smartphone operating systems—iPhone, BlackBerry, Android—offer encryption options.

Your third step is third-party security apps. Lookout Mobile Security is a good starting point for Android, BlackBerry and Windows Mobile users. The free package includes an antivirus application, automated data backup and a device tracker. iPhone users can pay for MobileMe. But don’t let tracking programs fool you: They all need to be activated and running in the foreground to work. If your phone is off or the app isn’t running when the phone goes missing, it’s not much good. (And surely a smart thief knows about the $20 signal-blocking bag that stymies any tracking app….)

The last, and perhaps most important, element of securing your smartphone is smart use—awareness. Hackers have long been able to intercept information over open Wi-Fi networks. Even the strongest protection, WPA2, has exploitable security flaws. So unless you’re on a trusted network, don’t enter any personal information or check important accounts. That free airport wireless network? You’d be foolish to enter your email, social network or banking information over that connection. You just don’t know who’s watching.

Someone stole your smartphone—now what?

   • Find that pen-and-paper list.

   • For all accounts, websites and documents on that phone, change the password immediately
     —Gmail, Facebook, Dropbox and even your secure work connection. With reverse phone
     lookups, anyone with five bucks and your cell phone number can find more personal
     information, from addresses to tax and real estate records.

   • Consider a credit- or fraud-monitoring service. A dollar spent on prevention can save
     hundreds on a cure.

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Making New Year’s Resolutions Stick

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