living donr liver
ABarnes415
Can anyone give me any info on being a living donor for my son Adam 9mths old.
He doesn't need one yet, but I would like to have as much info as possible on
the
subject.
Here in the UK they do quite alot of living donor's at the Kings Hospital in
London
but finding info on this is nearly impossible, or maybe just for me as I'm new
to the Internet.
Can anyone help?
Thank you
Angie and Adam Barnes
Jim & Marilyn Dueppen
Angie and Adam Barnes,
Living donor for what?
a Kidney? (Yours is too big now)
a liver lobe?
a lung lobe?
More info will get more responses.
Good Luck!
Jim (Liver 11-24-93)
> the use of, and commands for, TRNSPLNT.
Please see http://www.concentric.net/~holloway for information regarding
the use of, and commands for, TRNSPLNT.
Lisa Carroccio
ABarnes415 wrote:
>
> Can anyone give me any info on being a living donor for my son Adam 9mths old.
> He doesn't need one yet, but I would like to have as much info as possible on
> the
> subject.
>
> Here in the UK they do quite alot of living donor's at the Kings Hospital in
> London
> but finding info on this is nearly impossible, or maybe just for me as I'm new
> to the Internet.
>
> Can anyone help?
>
> Thank you
> Angie and Adam Barnes
>
Hey Angie and Adam:
Here's an article from the May/June 1996 issue of the Biliary Tree
newsletter on Living-Related Liver Transplantation:
LIVING DONOR
Written by Mary-Ellen Rozak,
mother and living-donor of her son, Jack
with the assistance of
Dr. Alan Langnas,
Jack’s Surgeon and
Professor of Surgery
Department of Transplantation
University of Nebraska Medical Center
Since the beginning of organ transplantation, there has been a serious
shortage of pediatric donors. Reduced-size liver
transplants (RLT) and split-liver transplants (SLT) were the first
attempts to increase the donor pool for children suffering
from end-stage liver disease. Many children who were accepted as
candidates for liver transplantation died before a
donor was found.
In 1987 reduced-size liver transplants enabled surgeons to cut down a
liver from an adult cadaver donor to fit a
small child. Even though this did not increase the donor pool, larger
donor livers which would have gone to adult
recipients could now be utilized in the pediatric population. RLT has
become a standard practice at many transplant
centers with success rates comparable with full-size liver transplants.
In 1988 split-liver transplantation was introduced. This allowed two
young recipients to share one adult cadaver
organ. The recipient receiving the left-sided graft usually has success
rates similar to whole-sized grafts, but the child
receiving the right-sided graft usually has a lower rate of success.
Although SLTs did increase the donor pool, this type of
surgery was only performed in emergency situations. Recently, some
transplant centers have reported renewed success
with SLT, particularly in Europe.
Before living-related liver transplants (LRLT) were performed, left
hepatectomies in non-cirrhotic patients were
evaluated at a mid-western hospital. They noted no deaths. Major
complications were less than 1% and minor
complications were only 5% to 7%. It was concluded that the risks of
this type of surgery were low enough for a parent or
close relative to donate a portion of their liver to a child suffering
from end-stage liver disease.
The first successful living-related liver transplant was performed in
Australia in July of 1989. In November of 1989
LRLT became an option in the United States. In fact, Alyssa Smith, the
first infant in the United States to receive part of
her mother’s liver, is one of our own Biliary Tree kids.
By 1992 LRLTs were being performed routinely at several centers around
the world. Today, numerous pediatric
transplant centers in the United States perform living-related liver
transplants. About 700 living-donor transplants have
been performed worldwide.*
Living-donors must be ABO (blood type) compatible and undergo
psychiatric evaluation before the acceptance into
the LRLT program. This helps demonstrate coping mechanisms of the donor
and the donor’s true willingness to
participate.
The prospective living-donor also goes through a three-part physical
evaluation. The first part of this evaluation
consists of blood chemistry, a full physical exam, and a detailed
medical history. They must test negative for hepatitis and
the HIV virus, have normal liver and kidney functions and have a normal
EKG. The second part is a CT scan to show the
approximate size and shape of the liver and to see if it will fit into
the recipient. It also shows if a section of the liver can
be removed without causing problems for the donor. Finally, an
angiogram (an invasive procedure which details the flow
of blood through the liver and arteries) is performed. It is estimated
that approximately seven out of ten parents are not
suitable donors for their children.
Pregnancy testing is now required for all prospective female donors of
childbearing age. There have been at least
two cases where the female donors were later found to be pregnant during
the donor operation. Fortunately, both
mothers, Biliary Tree moms, delivered healthy full-term infants.
The liver can function with up to 75% of the organ diseased or removed,
because of its vast surplus of active tissue.
In LRLT 15% to 40% of the liver is removed from the donor’s left
lateral lobe. The operation is about seven hours
long and done under general anesthesia. First, a large incision is made
and the left hepatic artery and left portal vein are
dissected out. The left bile duct is then divided and the left lateral
lobe of the liver is separated. The hepatic artery, portal
vein and left hepatic vein are then clamped and divided. When the liver
is finally freed, it is quickly prepared for
transplantation into the child. A portion of the saphenous vein in the
leg of the donor is also removed so it can be used to
connect the blood vessels between the recipient’s liver and donor.
Usually the donor is hospitalized for a minimum of six
days.
The recipient’s operation begins more than two hours after the
commencement of the donor’s surgery. The
procedure is very similar to a standard liver transplant with two
notable exceptions: First, because a living donor graft
does not contain a vena cava (one of the two main veins conveying blood
to the right atrium of the heart), the child’s vena
cava must be preserved. Second, the living donor graft does not contain
a common bile duct. A technique, similar to the
Kasai Procedure, is employed by using the donor’s bile duct to connect a
loop of the child’s small intestine. The recipient’s
operation usually lasts from four to eight hours. Post-transplant care
follows the routine cadaver protocol.
The risks for the donor are the same as any other abdominal surgery:
infection, reactions to anesthesia and blood
clots. The risk of donor mortality is less than 0.05%. To date, no
living-donor deaths have occurred in the United States.
There has been one death resulting from this procedure in Germany due to
a blood clot.
The thorough testing of the living-donor ensures that the liver graft
is of a very high quality. LRLT rejection rates and
immunologic graft losses are similar to those of standard cadaver organ
transplants. The two most common reasons for
graft loss in LRLT are arterial thrombosis and acute rejection.
Some families choose to opt for living-related liver transplantation
immediately because they do not wish to see their
children suffer any more than necessary. Parents can have their child
transplanted while the child’s health is relatively
stable. Another advantage is that surgery can also be scheduled instead
of anxiously waiting for their beepers to go off if
and when an organ donor is found. Others have family members evaluated
and ready to go but wait in hope that a
cadaver donor so the living-donor doesn’t have to endure unnecessary
surgery. Some parents proceed with LRLT only
when their child’s health deteriorates significantly. LRLT also offers
families a back up if a cadaver donor fails and another
liver is needed immediately.
Standard liver transplantation is still the first choice among surgeons
and parents. Some parents choose not to wait
for a miracle to happen when they can be part of the miracle
themselves. Since 1989 and the advent of living-related liver
transplantation, fewer and fewer of our children have passed away while
waiting for a liver to become available.
Living-related liver transplantation is not the answer for all families,
but for many, it is.
xxxxxxxxxx
Here's some of our web links for LRLT:
http://www.brainerddispatch.com/FPStories/january97/FP012897b.html
http://bcn.boulder.co.us/health/chn/transplant/trans_QnA.html
http://www.mednet.ucla.edu/dept/xplant/ld.htm
http://www.nuh.com.sg/view/nuh/liver2.htm
http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query?uid=9097497&form=6&db=m&Dopt=r
http://www.astp.org/abstracts97/cg195281.htm#E13E193
http://www.unos.org/sta_tran.htm
http://www.uihc.uiowa.edu/pubinfo/pmoct96.htm#six
http://www.uihc.uiowa.edu/pubinfo/pmoct96.htm#five
http://www.lhsc.on.ca/transplant/lfp2.htm
http://www.lhsc.on.ca/transplant/lfp2.htm
http://www.unos.org/livdonfa.htm
If you would like to correspond via e-mail with other family members who
have been living donors to their children, please let me know. Hope
this is helpful.
Wishing you a happy and healthy new year!
With friendship,
Lisa
--
Lisa Carroccio
Chairwoman & Founder
CHILDREN'S LIVER ALLIANCE
formerly the Biliary Atresia & Liver Transplant Network (BALT)
E-Mail: Liver...@earthlink.net
Web: http://www.livertx.org
Telephone/Fax: (718) 987-6200
3835 Richmond Avenue, Box 190
Staten Island, NY 10312-3828 USA
ABarnes415
Adam has bilairy Atresia which leads to severe damage of the liver, so it's
actually questions on live liver donor's.
Thank you for letting me know I thought I'd specified which one
Yoshiaki Kita, M.D.
In Japan, we are performing a lot of living-related liver transplants. In
US, Dr. Tomas Heffron in Omaha and Dr. Jean Emond in New York is in charge
for LRLT.
We are very happy to accept foreingn patients also.
Yoshiaki Kita, M.D.
University of Tokyo
Linda Copper
I have the newspaper articles of two sisters involved in living transplants.
I am more than happy to send them to you if you have a fax machine or give
me your address. The sister (donor) is a friend of one of my friends and
said that both livers had regenerated fully!!! in 8 days!!
Today my daughter indicated she would like to be my donor. She is the same
blood type so we shall see. Good luck and let me know.
Lisa Carroccio
Yoshiaki Kita, M.D. wrote:
>
> In Japan, we are performing a lot of living-related liver transplants. In
> US, Dr. Tomas Heffron in Omaha and Dr. Jean Emond in New York is in charge
> for LRLT.
>
> We are very happy to accept foreingn patients also.
>
> Yoshiaki Kita, M.D.
> University of Tokyo
>
> the use of, and commands for, TRNSPLNT.
Dear Kita and friends:
Tom Heffron is now in Atlanta, GA at Egleston's Children's Hospital of
Emory University. Dr. Jean Emond will be ready to do his first LRLT in
New York by mid-January. Here's our latest list of LRLT centers in the
U.S.
Baptist Medical Center of Oklahoma (Intergris)
Boston Children's Hospital - Dr. Joseph Vacanti
Cardinal Glennon's Children's Hospital
Children's Hospital Medical Center, Cincinnati, OH - Dr. Ryckman
Children's Hospital of Denver
Children's Hospital of Philadelphia (CHOP) - Dr. Avi Shaked
Children's Memorial Hospital - Dr. Rick Superina
Dallas Liver Transplant Program
Duke University
Egleston's Children's Hospital at Emory University - Dr. Tom Heffron
Fairview University (Formerly University of Minnesota - Dr. Gruessner
Hermann Hospital
Johns Hopkins - Dr. Paul Colombani
Lucile Salter Packard Children's Hosp at Stanford - Dr. Carlos Esquivel
Massachusetts General Hospital - Dr. Cosimi
Medical College of Virginia Hospital
Mount Sinai Medical Center - Dr. Myron Schwartz
Primary Children's Hospital - Dr. Rebecca Meyers
St. Christopher's Hospital for Children - Dr. Stephen Dunn
Texas Children's Hospital
University of California at Los Angeles (UCLA)- Dr. Ron Busittil
University of California at San Francisco (UCSF) - Dr. Nancy Asher
University of Chicago/Wyler's Children's Hospital - Dr. Mike Millis
University of Miami/Jackson Memorial - Dr. Andy Tzakis
University of Michigan - Dr. Jeff Punch
University of Nebraska Medical Center - Dr. Alan Lagnas
University Hospital-Newark, NJ
University of North Carolina at Chapel Hill
University of Pittsburgh - Dr. Jorge Reyes
Washington University-St. Louis Children's Hospital
Westchester County Medical Center, NY - Dr. Jim Piper
Wilford Hall Medical Center
--
Ironically, when at the Internation Transplant Congresses in Washington,
DC this summer, I attempted to locate you, but you had already left.
I've corresponded with the first living donor liver recipient in Japan
(Tadashi Wakabayashi, I believe) and he said I should introduce myself
to you.
There's always next time...
ABarnes415
Hi everyone
Angie and Adam here, we'd like to know does anyone know of anything I can use
on Adams wee bum to stop it getting sore.
Apparently because of the biliary atresia he will be prone to sore bum's and
with all the rest that the poor wee mite has to put up with it's not fair ~
bless him.
If anybody has any idas I would be really greatful, I've tried most things, but
what ever's going on with these nappys it just seems to burn him.
Thank You
Angie and Adam
Lisa Carroccio
Hi Angie and Adam:
Here at the network families have tried everything imaginable; however,
what seems to be the favorite choice for diaper rash in our liver kids
is good old Caldescene Powder (you know,the one in the pink bottle?).
Others use Aquasol ointment.
Hope this helps.
With friendship,
Lisa
--
Lisa Carroccio
Chairwoman & Founder
CHILDREN'S LIVER ALLIANCE
formerly the Biliary Atresia & Liver Transplant Network (BALT)
E-Mail: Liver...@earthlink.net
Web: http://www.asf.org/balt.html
Lutegirl
To help soothe the itchy-ness, I would give him a bath with Alveeno-Oatmeal
soap.The Bile in the skin is probably what is causing the soreness.Also a
light dry powder is useful to prevent chafing and excess moisture.I'd be
careful with anything else ointment-wise over the counter, I would talk to the
doctor first.(Kids with Biliary Atresia also can get sunburns and bruise
easily.I limit and monitor time spent outdoors).I hope this helps,it's hard to
see them so uncomfortable,and difficult for them to tell you exactly what it
is that makes them feel so bad.
Andrea
ABarnes415
Hi Lisa
Thanks for your letter, I'm going to the chemist today to see if we can get
caldescene powder over here. I hope it works, he seems really sore with it.
By the way did you recieve my letter with regards to MCT Pepdite special
formula?
I could try and get what I have flown over to America for you if it would hepl
Thanks again Lisa, it's great to have people to ask these questions to.
Love
Angie and Adam
Dorothy Bourdon
Hi there,
Our son Nicholas frequently had terrible diaper rashes when he was a baby,
which we came to call "Monkey Butt." (You know, after those monkeys with
the bright red rear ends!) At times his bottom was so brilliant red and so
sore that it was difficult to hold him without hurting him. What made it
especially hard to deal with was that it happened so quickly. One moment
he had a perfectly smooth pink baby bottom, and the next moment he had a
fire engine-red 4 alarm monkey butt. The only explanation we heard for
this was that because of the Kasai procedure, bile acids can build up in
the stool and the moment they touch the skin, they burn.
Just speaking from my own experience, I will offer that "this too will
pass." With time, Nicholas' system seemed to adjust to the Kasai and these
episodes came less & less frequently. In the meantime, the best way we
found of dealing with it was keeping him scrupulously clean, washing with
warm water, air drying frequently (tricky but really helps), and keeping
baby ointment well applied as a barrier. One interesting idea I've heard
of, but never tried, is mixing a pinch or two of Questran powder
(cholestyramine) with water based jelly and applying that to the affected
area. Questran is a prescription medicine that some children with biliary
atresia take to relieve itching or treat high cholesterol.
Happy Holidays to all!
yours,
Dorothy Bourdon
dbou...@tir.com