Re: explaining liver transplant to children

[Guest guest]

Is there an organ procurement center close to you that might have this

information for you? For instance, in Kentucky we have the Kentucky

Organ Donor Affiliates...they have all types of information, however,

I'm not sure about things for kids...just an idea. Best wishes!!

Bobby & Anne

[Guest guest]

Hi Sara;

Welcome to the group. A fairly simple description of liver

transplanation is given at:

http://digestive.niddk.nih.gov/ddiseases/pubs/livertransplant_ez/

" What I need to know about Liver Transplantation "

You might be able to use this article as a starting point to help

explain what is involved to your children.

Best regards,

Dave

(father of (20); PSC 07/03; UC 08/03)

>Do any of you know of good books for kids explaining liver/organ

transplantation? Any other resources you have found useful? Your

suggestions will be greatly appreciated.

[Guest guest]

Hi, I doubt they have anything specifically for liver transplant.

You must understand that Norway is a pretty small country (pop 4,5

million), and so the number of families with kids experiencing a

parent going through liver transplant is not huge..! The numbers in

the US must be much, much higher. Since this group seems to be

mainly us-based users we were hoping someone might have tips. Books

in english are no problem as our son is bilingual.

Sara

>

> Is there an organ procurement center close to you that might have

this

> information for you? For instance, in Kentucky we have the

Kentucky

> Organ Donor Affiliates...they have all types of information,

however,

> I'm not sure about things for kids...just an idea. Best wishes!!

>

> Bobby & Anne

>

[Guest guest]

Hi Sara- I did a search on amazon.com and found this book, Organ Transplants: A Survival Guide for the entire family-here is the link http://www.amazon.com/gp/product/0810849240/sr=8-1/qid=1142456371/ref=pd_bbs_1/104-1410421-9948724?%5Fencoding=UTF8 I also did a google search on teaching kids about organ transplants and found this website siting some various books http://www.transweb.org/reference/books/young.html Hope this helps. in Texassara wrote: Hi, I doubt they have

anything specifically for liver transplant. You must understand that Norway is a pretty small country (pop 4,5 million), and so the number of families with kids experiencing a parent going through liver transplant is not huge..! The numbers in the US must be much, much higher. Since this group seems to be mainly us-based users we were hoping someone might have tips. Books in english are no problem as our son is bilingual.Sara>> Is there an organ procurement center close to you that might have this> information for you? For instance, in Kentucky we have the Kentucky> Organ Donor Affiliates...they have all types of information, however,> I'm not sure about things for kids...just an idea. Best wishes!!> > Bobby & Anne>

[Guest guest]

I asked about this a while back. Deb in VA kindly responded with a lot

of info. She had her transplant last year and has a son who is about

your older child's age. I saved her message; below is part of it.

My daughter got some peer support from the other kids in her

kindergarten class. She was upset that I had to go to a distant

hospital several times; it turned out she has several classmates whose

parents have been hospitalized as well.

Martha (MA) UC1979, PSC 1992

From Deb in VA:

(OPO is Organ Procurement Organization in the US)

>We read kids books about transplants that I got

> from my OPO. I even sent home a packet of Organ Donation information

> with his preschool class. We talked a lot about what it would be

> like when Mommy got a tx - whether from Mike or from another donor.

> He knew that I would have to be in the hospital. He knew about

> immunosuppressents and how they try to keep the white blood cells

> from finding the new liver.

>

> I used a book called How to Help Children through a Parent's Serious

> Illness by Kathleen McCue and Ron Bonn. The book was invaluable. It

> told us to be honest - to have someone take care of him exclusively-

> to shift him around as little as possible, to let him see us as

> much and as soon as possible. It is written by someone who worked in

> a hospital and helped families through bigtime stuff like cancer,

> transplant, and a whole host of other illnesses. I really liked how

> she actually gave examples of families dealing with transplants.

Do

> any of you know of good books for kids explaining liver/organ

> transplantation? Any other resources you have found useful? Your

> suggestions will be greatly appreciated.

>

> Sara

>

[Guest guest]

Hi Sara

Try this booklet. I hope they speak English!

http://www.uhb.nhs.uk/depts/liver_unit/documents/liver%20booklet.pdf

Tim (UK)

Do

> any of you know of good books for kids explaining liver/organ

> transplantation? Any other resources you have found useful? Your

> suggestions will be greatly appreciated.

>

> Sara

>

[Guest guest]

,

You have a very good memory! On Feb 15, 2000 Jodi wrote in message

8961 - " Also, when gets to the point where he's asking more

questions, and you feel he's ready to know more, there's a really

good children's book called " Lizzy Gets a New Liver " by Lizzy

Ribal. She wrote it when she was 10, had a transplant at the age of

8.

I ordered it through Amazon.com and it took a while to get it.

You may want to order it early and have it on hand. It's one of

's favorite books and he reads it often.

Jodi, 's Mom "

Even though it is about a child getting a transplant it may be

helpful in explaining a parent's situation.

Tim R LTX 1998, recurrent PSC 2002, relisted 2005, MELD 19, much

relieved by a clean (no problems) colonoscopy report from Tue.

>

> I don't remember the name of the book but I remember that Jody

Rhoades

> posted about a book that she thought was wonderful for kids. She

posted it

> shortly after I joined the group, so about Oct 1999 up to maybe

Jan 2000.

[Guest guest]

Sara,

My son was four when I had my liver transplant last year. There were a

couple of books we used - neither one about liver transplants exactly,

but close. Unfortunately, I don't know how widely available they are.

I got both of them from the Washington Regional Transplant Consortium.

(They have a web site www.wrtc.org.) One was for Kidney transplants,

but it was from a kid's point of view and a lot of the same

information applied (waiting for the call, avoiding infection

afterwards, etc.). It was put out by a drug company, I believe. The

other was written by a local author and not published nationally. It

was called, How do they get that heart to fit down your throat? This

one was darn near perfect because a kindergarten teacher wrote it.

I wish I could do more. I don't even know where they are now, but if

you email WRTC, you might be able to get copies or find out how to get

copies for yourself.

There's also a fabulous book called How to Help Children Through a

Parent's Serious Illness by Kathleen McCue and Ron Bonn. 1996. You can

get it in paperback on Amazon for about $10.00 in the states. It was a

wonderful reference about how to help our son face this challenge that

our whole family was trying to handle.

HTH,

Deb in VA

PSC 1998, UC 1999, Listed Ltx 2001, LDLTX 5/19/2005...

[Guest guest]

How Will They Get That Heart Down Your Throat: A Child's View of

Transplants

by Walton, Patrice (Illustrator)

Paperback: 50 pages ; Dimensions (in inches): 0.21 x 7.95 x 9.48

Publisher: E. M. Press; 2nd edition (April 1999)

ISBN: 1880664984

Cover picture:

http://images.amazon.com/images/P/1880664992.01.LZZZZZZZ.jpg

There are 2 used copies are available at Amazon, but they are at a

premium to the list price (probably because the book is out of print).

Tim R

> ... The

> other was written by a local author and not published nationally. It

> was called, How do they get that heart to fit down your throat? This

> one was darn near perfect because a kindergarten teacher wrote it.

>