Our quadruplet daughters were born July 7, 1998. Our daughter Alessandra
was stricken with necrotizing enterocolitis at 19 days old. She had
most of her small and large intestine removed and was unable to eat.
She had IV nutrition only, and was fed this way for many months. Over
the months, her liver failed and she went into end stage liver failure.
Our doctors at Baylor College of Medicine in Houston told us she was
not a candidate for a liver transplant and told us to take her home
to die.
A private doctor here referred us to Omaha, where he said she had
the best chance she was going to have. We brought her to The Nebraska
Medical Center April 13, 1999, and by the end of the day she was
already listed as Status 1 for a liver. On April 30, 1999, she received
a liver transplant from a cadaveric donor. Because she was so sick
when she got there she had many close calls and stayed in the PICU
for four months. Over and over when we thought she wasn't going to
make it, the doctors saved her every time. She came home in August
1999 with a trache, a g-button, without being able to walk, chew,
eat, or swallow. Due to a slow and steady recovery with excellent
care and support from The Nebraska Medical Center staff, she is now
happy, running around and a wonderfully active child who enjoys life
to the fullest every day.
If it wasn't for Dr. Shaw, and his skill not only with her liver
but in fixing her
bowel in the 13 hour transplant, and the wonderful follow up care
of Dr. Horslen and Dr. Kaufman and the whole nursing team, pediatric
transplant coordinators, etc., all working together, she wouldn't
be alive today. Our time in the Lied Transplant Center taught me
how to take care of my daughter with the support of the medical team
as well.
I tell our hospital here in Houston all the time that Nebraska really
knows what family centered care is all about. An attending physician
was always available when needed, and our concerns were never dismissed.
Even though we live in Texas, we will always keep our care with Nebraska.
Gabriella Mackin
Mother to Alessandra who received
a liver transplant in April 1999
Houston, Texas
"
During a very difficult time for our family, we found comfort in
knowing that Connor was receiving the best medical care possible
at the The Nebraska Medical Center. We had total confidence in Connor’s
doctors and the entire transplant team. We highly recommend the The
Nebraska Medical Center to anyone in need of a transplant. We are
grateful for all they have done for Connor’s aunt, his living-related
donor, and for giving our son the chance for a healthy life."
Dan and Julie, Parents of Conner
Kentucky
" My experience at The Nebraska Medical
Center was fantastic. I made it through it. When you have about
zero chance of making it and come out of it and feel well for 13
years since the transplant, I’d say that’s pretty good."
"I had fantastic care. The Nebraska Medical
Center was reasonably close to home which makes it nice. The team
was fantastic. Laurie is still my second love!"
Larry, Liver Transplant Recipient, August, 1985
Iowa
In Their Own
Words: Stories of Transplant Recipients
The following interviews were conducted in
June, 2004 at The Nebraska Medical Center. Some interviewees were
at the hospital for their annual checkups, some were just out of
surgery and others are employees of the Medical Center.
James (J.R.) Knowles, Farmer
Received liver from son, March 2003
Avon, Utah
I was diagnosed with Primary Sclerosing Cholangitis
(PSC) five years ago, but it didn’t start bothering me until
about two years ago, so I got on the transplant list then. I was
on the list for about a year and a half, and my condition was getting
really bad. My doctors recommended I look for an alternative, since
I really needed a transplant and the likelihood of a compatible
liver coming available wasn’t too good.
Luckily, I have four children with whom I had
a match. I asked my oldest son to be evaluated and they determined
that he could be a donor. So, last year, my son donated 60 percent
of his own liver to me. We knew his liver would grow back, which
it has, and he’s had no problems whatsoever.
I feel great. I fell like I can live a lot
longer with this new liver. They tell me I wouldn’t be here
if I hadn’t had the transplant. I was lucky enough to have
had access to a live donor in my own family.
I would say to people that it is important
to consider donating organs—there’s always a need and
there aren’t enough. My experience has certainly made the
people in my family aware of that option.
Dave Eggers, Colonel, United States
Air Force, retired
Transplant Center Concierge, The Nebraska Medical Center
Liver Transplant recipient, April 1998
Papillon, Nebraska resident
I was a fighter pilot with the Strategic Air
Command in the late 1980’s when I got really jaundiced. The
Air Force sent me all over the country to secure a diagnosis. At
first they thought it was cancer, but then I got a reprieve. I
was diagnosed with Primary Sclerosing Cholangitis (PSC), a serious
disease of the bile ducts in the liver. This was a “good
news/bad news” diagnosis. I wasn’t going to die of
cancer, but I would probably die in ten years if I didn’t
have a liver transplant.
PSC progresses slowly. After my diagnosis in
1989, the Air Force kept me on until 1997, when I was so ill I
had to retire. That year, I was placed on the transplant list.
The waiting was agony—bad for me, but in many ways, much
worse for my wife and children. I had no energy. We would go to
the grocery store and my wife and kids would unload the car. I
would go lay down. Ten months after being placed on the transplant
list, I received my liver.
After a 12-hour operation, I felt better almost
immediately. My head cleared up. I was in the hospital for just
nine days and back to work in just three months. At the time, I
was working for a contractor at the Air Force base. Though I felt
fully back to normal in six months, I decided to leave that job.
I recognized that I had an obligation to others…so when the
Medical Center’s Lied Transplant Center offered me a job,
I took it and have been helping transplant patients here ever since.
I don’t know who my donor was—in
fact, any kind of organ donation is kept anonymous to allow the
deceased donor’s family to grieve for their loved one. I
do write my donor family every year at Christmas to thank them
for the wonderful gift of life I have received. The Medical Center
has a system in place that allows us to write our donor families
anonymously. It also can arrange for donor families and recipients
to meet when the families are ready.
People are always asking me about organ
donation. I tell them to get the facts and be sure to let their
families know that they want to be a donor, since the family
may be asked to provide consent.
Jacque Krier, LCSW
Family Medicine Social Worker, The Nebraska Medical Center
Liver Transplant recipient, July 2000
Omaha, Nebraska resident
One of the ways receiving a transplant changes
your life is that you never take anything for granted again… getting
up in the morning, a sunset. It may sound trite, but it is true--facing
death changes your perspective on life. My own journey had a tremendous
impact on my life. I lived a one-day-at-a-time philosophy—and
there isn’t a day that goes by that I don’t thank my
donor and my donor family.
I also find that most transplant recipients,
including myself, feel they have a responsibility to their donor
to take good care of themselves. We’ve been given a second
chance at life and we owe it to our donor family to make the best
of it.
I can’t imagine what it was like 50 years
ago, when transplant surgery was just beginning—not having
anyone to share your situation with. It is a tribute to the tremendous
advances in medicine that transplant has become such successful
surgery, with far less chance of complication.
Financing is a big factor in transplant. Even
for those with insurance, like me, some expenses are not covered.
I think the biggest problem for post-transplant patients is how
to pay for their medications. I think back and just after my surgery,
I was taking 35 pills a day. And for most of us, many of these
anti-rejection medications must continue for the rest of our lives.
Medicare doesn’t cover these medications either. The expense—upwards
of $1,000 a month--can be a burden and is a big topic of discussion
among transplant recipients.
I would love to meet my donor family someday.
There are no words to express my feelings. ”Thank you”,
though those are the only words we have, just doesn’t cut
it.
Since my transplant, I’m a regular at
the Medical Center’s support group for solid organ transplant
recipients. The group gives people waiting for transplant a tremendous
opportunity to get questions answered and to see transplant recipients
who are doing well. I go back now to give back the benefit of my
experience.
The Medical Center attracts people from all
over the world, and most of us spend a long time waiting for our
donor organs. So we get to know each other during a profoundly
emotional time in our lives. The annual transplant reunion is an
opportunity for recipients to see each other again and to see everyone
who has given us such good care. The annual luncheon, where you
see hundreds and hundreds of people of all ages, all ethnicities,
some of whom were transplanted ten or 20 years ago, doing so well—it’s
just overwhelming.
Renee Ziemba
Mother of baby Taylor Ziemba
Taylor received a liver-small bowel transplant, June 2004
Jackson, Michigan residents
Taylor ended up in the Nebraska Medical Center’s
Pediatric Intensive Care unit after a long bout with a very hard-to-diagnose
illness. It took eight weeks for doctors in Michigan to determine
that Taylor had Microvillous Inclusion Disease, which means her
small intestine could not absorb any nutrients. As a result, Taylor,
who was just a few months old at the time, had to be fed intravenously.
Tragically, her IV nutrition wound up damaging her liver and she
went into liver failure.
My husband and I immediately searched the Internet
for medical centers that do pediatric small intestine transplants.
The Nebraska Medical Center’s stats for survival were really
good and it is listed as one of the number one transplant centers
in the world, so we brought Taylor here in April to be evaluated.
She was so sick they kept her here and two months later, on June
2, she had a liver-small intestine transplant. So far she’s
doing well—in the first week she’s been back on the
breathing machine, but we expect her to be taken off that shortly.
Since we’re from Jackson, Michigan, we’ve
been staying at the Lied Transplant Center, which is connected
to the hospital. We can come to see Taylor any time day or night.
And since we will be here for at least six months as Taylor recovers,
it is wonderful to have this access.
There really is not enough known about organ
transplant in children. As a parent, it’s certainly not something
you ever want to consider—something terrible happening to
your child. But I think if you are aware of stories like Taylor’s
beforehand, and something tragic does happen, you might be inclined
to make the decision to donate. As a mother who has waited for
her child to get an organ, I can tell you that it was a very anxious
time. They told us there was only a 50-50 chance that an organ
would come available for Taylor. Without this transplant, Taylor
would have died.
And now she has a second chance to live
a long life with good quality. It is terrible that a tragedy
must occur for someone else to enable this life-saving surgery,
but what I would say to our donor family is that their child
will always be a part of Taylor and live on in her. There are
no words to express my gratitude for this gift.
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