Family Spotlight

A COTA Teen is Thankful for New Beginnings … and a New Life

Recently Christin Kubicek of Trafalgar, Indiana, shared these thoughts about her second chance at life:

“You pass your driver’s test and you sit down for the DMV to take your picture. They ask you if you want to be an organ donor.  Most teens look at their parents to see what they say.  They follow the wishes of the most influential person in their life, which is what I did … that was until I was on the other end of this question.

I stepped off the bus one day after school in early November 2008 when my mom noticed I had yellow tinted skin.  We went to our family doctor.  First my mom thought it was a kidney stone.  When everything checked out fine there, we went to Riley Hospital in Indianapolis.  They did one test after another, including a biopsy, colonoscopy and blood tests.  Finally, two days before Thanksgiving, I was diagnosed with primary sclerosing cholangitis.  PSC is an autoimmune disease and the only cure is a liver transplant, so I was placed on the organ waiting list on December 19, 2008. 

After three months of waiting, I was called by the hospital; they said there was a possible match.  My mom and I called everyone we knew to tell them the great news.  We went to Indianapolis where we waited for eight hours for preliminary tests on the liver.  While we waited the nurses got me ready for surgery; they put IVs in, got a surgery room ready and took my blood for tests.  Unfortunately, the liver was rejected because it was too fatty.  We called everyone back the next day and told them the news.  Everyone seemed to be sad, but we
knew everything was in God’s hands and would happen when it was supposed to.  So I kept waiting for ‘the call’ and in the meantime, I went to Riley for check-ups and blood work every two weeks.

Every few months another symptom would appear.  First, I had a terrible itch all over my body because of toxin build-up.  The spots were so irritating that I would scratch them until I bled.  Next, I had xanthomas -- fat deposits on top of the skin that were very sensitive and hurt when they were accidentally bumped.  They looked like warts all over my knees, elbows and hands.  Then I was tired.  I could sleep 20 hours every day.  But my mom made me stay
awake to eat.  She did not want me to lose any weight and jeopardize my status on the organ waiting list.

Then it all happened.  On February 17, 2010, on my 17th birthday, I received my liver transplant.  I had waited a total of 14 months because of my small size and my rare blood type.  My liver is from a five-year-old boy from Michigan; it was a good size because it would grow to fit me. 

However, this was not the end of my journey.  Unfortunately, I had many complications.  I had to stay in the hospital for two months instead of the usual two weeks until doctors determined my medication needs and found the perfect dosage.  My kidneys failed a couple of times from changes in medicine, but I did not need dialysis or a re-transplant. 

Even though all these things happened, I kept up with my schoolwork because I wanted to graduate with my class.  My high school sent two teachers to the hospital and to my house while I was gone from school so I could finish out the year.

The Children’s Organ Transplant Association (COTA) has been a big help to our family.  My
mom says, “COTA kept us out of bankruptcy; COTA helped us keep up with our bills when I was staying at the hospital caring for Christin and unable to work.  COTA took my worries and stress away so I could devote all of my time and energy to help Christin get well … and that gave me hope that everything was going to be OK for
our family.”

Thanks to everyone at COTA and to all of the COTA volunteers who worked so hard to help us, it has been over two years since my transplant and I feel better than ever. 

My mom says I act like a normal teenager.  I have a car; I hang out with friends, and I have more energy than I had before the transplant.  I went to prom last May and I graduated with my class -- two of my post-transplant goals.  I am now attending college. 

Now … on to new post-transplant adventures!

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Family Resources

Exercise Options for Post-Transplant Patients

Before the transplant, your child may have felt too tired or too unwell to exercise regularly or at all. Now that your child has a new organ, he or she should start to feel better.  Physical activity is actually encouraged.  Routine childhood activities like biking, swimming, t-ball and hiking should be resumed within the first year depending on your child's rate of recovery.  From an infection point of view, it is safe to go swimming after about three months.  It is a good idea to set up an exercise routine.  Walking is a great way to start!

For the first three months after your child's transplant, heavy lifting and vigorous sports are usually restricted.  By one year post-transplant, your child should be able to return to most regular sports.  Some sports like football, hockey and wrestling should be avoided.  They involve direct, rough contact which could cause injury or internal damage.

Exercise is good for transplant patients’ mental health and physical well being.  Being active can help to lower the effects of muscle and bone weakness from prednisone and other transplant medicines.  A daily exercise plan can help transplant patients avoid the muscle and general body weakness that often happens after a long illness or time in bed. Slowly increase the level of exercise over time to avoid strain or serious injury.

Before starting any exercise program, check with your child’s transplant team.  They will help plan an exercise routine that will best meet your child’s needs.  If while exercising your child experiences any of these symptoms, stop all exercising until you talk with your transplant coordinator.

• Pain or pressure in the chest, neck or jaw

• Feeling tired even though the child has been sleeping well

• Shortness of breath

• Dizziness or feeling light headed during or after exercise

• Faster or irregular heartbeats during or after exercise

If your child experiences sudden pain or shortness of breath during an activity, he or she should stop right away.  Contact your doctor if pain persists.  It is also best not to exercise directly after a meal.  If your child has a temperature, is fighting a cold or the flu, or
feels tired or generally under the weather, it is better to skip exercise that day and get some rest.

Swimming
Swimming is allowed and is a good form of exercise.  It should take place in an uncrowded pool or the ocean.   If the patient has a central line in place, special care must be taken during swimming.  Be cautious if swimming in a pond, lake or river.  Talk to your doctor about the risks if your child is less than a year post-transplant.

Sun Exposure

Transplant patients have a high risk of skin and lip cancers.  Since the risk increases over time, always protect your child’s skin from the sun's ultraviolet rays.  Make sure your child follows these sun exposure safety practices:

• Avoid time in the sun between 10 am and 4 pm when the sun's rays are strongest.
• Wear long sleeves, pants and a hat when outdoors or use sunscreen on exposed skin.
• Use sunscreen lotion with skin protective factors (SPF) rated at least 30.
• Use sunscreen lotion and lip balm anytime while outside, whether the sun is shining or it is raining.
• Be sure to cover all skin that is not covered with sunscreen, especially the face, neck and hands.

Reapply sunscreen every few hours and after swimming. Follow the directions on the label.

Source: Children's Hospital of Pittsburgh; University of Iowa Health Care;
Ohio State University Medical Center

For more information about Transplant Family Resources, please call Jackie
Tate or Rebecca McCall at 800.366.2682 or visit www.cota.org and click on
“Family Resources”.

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COTA Family News

Keep Track of Available Funds

As COTA community campaign teams fundraise, you will notice the thermometer on COTA's patient donation pages going up. The amount of money shown on the donation page thermometers reflects the total funds that have been raised (minus fundraising expenses). Remember: This amount is not the same as the balance of funds available for transplant-related expenses.

To receive a balance of funds available, COTA families can email a balance request to BalanceInfo@cota.org.  In the subject line, please type COTA for Patient Name.  You will typically receive an email detailing the total available funds within one business day of COTA receiving your email.

Please call COTA at 800.366.2682 or email us at FamilyInfo@cota.org with any questions or concerns.

We are grateful for the opportunity to help ease the financial burden for our COTA transplant families, and we enjoy hearing from you!

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COTA Fast Fact

Funds Raised Are Not Taxable and Will Not Jeopardize Assistance Programs
The Children's Organ Transplant Association is the recipient and steward of all funds;
so families are not taxed on these funds nor do these funds jeopardize assistance
program participation.

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