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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Transplants Today

Slight Gains in Lung Transplant Outcomes Noted for Kids and Young Adults

Pediatric lung transplants are still rare -- only about 80 are done each year worldwide, researchers say.  A new report from one of the largest international transplant centers shows outcomes have improved somewhat since the first cases were done in the early 1990s.

When researchers from the Medical University of Vienna compared patients less than 18 years old who had surgery in the first decade of their program to those transplanted in the second decade, they saw 10% to 15% increases in one- and five-year patient and graft survival rates, but these improvements were not statistically significant.

They did, however, see better outcomes in patients on tacrolimus-based immunosuppression who accounted for only 13% of lung recipients in 1990-1999, as compared to 78% in 2000-2009 (p<0.001), according to a report published in the February 2012 online edition of the European Respiratory Journal.

Other significant differences between the two periods reflected some higher risk factor rates later on. There were more patients with preformed antibodies in the second decade (46% vs. 0%, p=0.024). Patients in the second decade were also younger (mean age, 13 vs. 18, p=0.027) and fewer transplants were for cystic fibrosis (50% vs. 94%, p=0.017), likely because more of those later cases were re-transplants.

Thomas Frischer, MD, and his colleagues performed 55 unilateral or bilateral lung transplant operations (including one heart-lung transplant) in 43 patients, including 31 children ranging in age from a few months to 17 years.  The other 12 were young adults aged 18 to 30.  Eighteen transplants were done in the program's first decade and all but one was for cystic fibrosis.  Thirty-seven transplants were done in the second decade.

Overall, cystic fibrosis was the most common indication for transplant.  The second most common indication was post-transplant bronchiolitis obliterans.

Twelve patients (27.9%) required re-transplantation at a median 32 months, for bronchiolitis obliterans in seven cases, acute rejection in three cases and insufficient lung function in two cases.  The median for estimated patient survival was 112 months (range, 2 days to 201 months).  Infections and bronchiolitis obliterans syndrome were the most common causes of death.

"Survival after lung transplantation is still well below transplantation of other solid organs but is increasing over the last decades," Dr. Frischer wrote.  "The subgroup of children and adolescents has been repeatedly reported to have poorer results," but according to this study, there was no difference in median patient survival between the children and the young adults.

Median graft survival was similar after primary and second transplants, at 71 and 76 months, respectively.  One-, five-, and 10-year graft survival rates were 71%, 51% and 15% respectively.

Graft survival was significantly worse if patients were hospitalized when organ(s) became available (p = 0.009), but this factor did not impact patient survival rate at five years.

Factors associated with better patient survival rates were tacrolimus-based immunosuppression (p= 0.03) and preoperative diabetes mellitus (p=0.007).  In fact, five-year patient survival rates with and without pre-transplant diabetes were 90% and 48%, respectively (p=0.023).

As for why diabetes might have a protective effect, the authors had no conclusive explanation, although they did have some theories.  They suggest, for example, that insulin administration might have a yet undiscovered salutary effect.

In the study, two-thirds of the patients developed renal dysfunction and nine (20.1%) required dialysis at some point during follow-up, according to the authors.  Fourteen patients had postoperative neurologic complications.

The authors point out, however, that once patients get through the immediate
post-operative period, those with normal lung function go to school and play sports.

Source – www.medscape.com

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COTA News

Are You Ready to Let COTA Help Your Transplant Families?

For more than 25 years, COTA has assisted transplant families representing every ethnic, economic, religious and social background throughout this country.  Working and guiding volunteers nationwide, COTA has helped nearly 1,900 transplant families and raised nearly $65 million for transplant-related expenses.

Along the way the team of professionals at COTA has shared tears, has helped families to conquer huge obstacles, has celebrated miracles and has provided hope.  COTA will work closely with volunteers in your transplant families’ home communities to ensure funds are raised ethically and used appropriately.  Because COTA is the trustee of the money raised, these funds are not taxable income and do not jeopardize a family’s participation in assistance programs.  Additionally, once certain fundraising goals are met, COTA offers challenge grants of up to $10,000 to each COTA community campaign.

To begin a COTA community campaign, ask your transplant families to:

• Complete and sign a Patient Agreement.
• Complete a Family Information Form.
• Ask their transplant physician to complete the Medical Information Form.
• Recruit one key volunteer and complete the Volunteer Information Form.

Please feel free to call us at 800.366.2682 or go to Request Information about COTA to see how COTA can give hope and make miracles for your transplant families.  COTA looks forward to hearing from you, and looks forward to helping make your families’ road to transplant just a little easier.

We look forward to hearing from you.  COTA’s staff is here, just a phone call or email away, ready to make your families’ road to transplant a little easier.  You can request materials for your transplant families by visiting www.cota.org, or by sending an email to jennifer@cota.org.

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Welcome to the COTA Family

These are recent additions to our COTA Family. Transplant Professionals referring
patients to COTA play a vital role in Giving Hope and Making Miracles for families of transplant-needy patients.

	Vivian Lemire is the daughter of Richard and Cara Lemire.  Born on December 21, 2010, Vivian was diagnosed with polycystic kidney disease.  The doctors at Cardinal Glennon Children’s Hospital in St. Louis, Missouri, have recommended a life-saving kidney transplant.  An estimated $50,000 is being raised by COTA for Vivian L volunteers in St. Charles, Missouri.
	Chloe Sesso is the daughter of Don Sesso and Allison Chan. Born on March 14, 2011, Chloe was diagnosed with dilated cardiomyopathy. The doctors at Lucile Packard Children's Hospital in Palo Alto, California, have recommended a life-saving heart transplant. An estimated $65,000 is being raised by COTA for Chloe S volunteers in Sunnyvale, California.
	Luke Hauser is the son of Marc and Samantha Hauser. Born on May 9, 2011, Luke was diagnosed with biliary atresia. The doctors at the Mayo Clinic in Rochester, Minnesota, have recommended a life-saving liver transplant. An estimated $50,000 is being raised by COTA for Luke H volunteers in Minnesota and Ohio.
	Born on December 3, 2002, Eli Olsen was diagnosed with hereditary pancreatitis and celiac disease. The doctors at University of Minnesota Medical Center in Minneapolis, Minnesota, have recommended a life-saving islet cell transplant. An estimated $500,000 is being raised by COTA for Eli O volunteers in Escondido, California and in Oregon and Washington.
	Born on June 29, 2005, Dylan Bishop Taylor was diagnosed with adrenoleukodystrophy. The doctors at University of Minnesota Hospital in Minneapolis, Minnesota, have performed a life-saving bone marrow transplant. An estimated $60,000 is being raised by COTA for Dylan Bishop T volunteers in Palm Bay, Florida.
	Born on January 6, 1994, Brandon Rodgers was diagnosed with End Stage Renal Disease. The doctors at the University of Michigan's Mott Children's Hospital in Ann Arbor, Michigan, have recommended a life-saving kidney transplant. An estimated $40,000 is being raised by COTA for Brandon R volunteers in Tecumseh, Michigan.

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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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