Please help. Heart Transplant.

[Guest guest]

There are some yahoo chat groups for heart transplant. One was

" HeartTransplantKids "

and I saw others available that may provide some of what you're looking for.

I'm so sorry you and your child have to deal with this. I'll hold her in my

thoughts

and prayers. That's all I have to offer.

in Ma.

[Guest guest]

I wish I knew some words that would heal your hurt and some advice to make

you feel wiser. I have a daughter that is almost a year old in need of a kidney

transplant... I still ask all the same questions you do. God, please bless

these little children and their families. I am very sympathetic to you and

your child. Take a moment to breathe and then take it ONE step at a time.

chrystal

mother of:

arleigh (4)

chrystine (11 1/2 months, CHaRGE+ juvenile diabetes+chronic kidney disease)

silas (3 wks.)

[Guest guest]

My baby is going to have a Ross Procedure done soon. The

cardiologist said that there is some " muscle thickening " also, and he

thinks the ross procedure wont help with that. He then stated that a

heart Transplant may be her only hope.

I have NO understanding of the process involved with this. It seems

impossable to find ENGLISH answers to my questions.

Will Medicade cover this?

What are her chances of getting through the surgery?

What are her chances of living a semi-LONG life?

I feel like throwing up. Are the any parents out there who have delt

with a heart transplant? I need FEEDBACK SOON PLEASE!!!!

[Guest guest]

What is her heart defect? I am sorry I cant answere any questions. Consider

applying to Sick kids international fund (toronto sick childrens hospital)

has a way of funding certain opperations. Depends if medicade wont pay. See

in canada (ontairio) heart operations are funded at all ages. Wich is a good

thing too since ive had 4 open hart surgeries!

I guess all I can really give is emotional support. Maby if you tell us the

type of heart condition your baby has someone here might be able to help.

Also Its hard to say the surgery risk. I had the surgery done when I was a

baby (over 20 years ago) and i survived yet some babies had the surgery this

year and didnt make it. Its really hard to say. We can always hope and pray

(if that is what you do) and have faith that your child will make it. We

dont always know whats gonna happen but we can hope for the best.

Hugs

Chantelle (CHARGEr)

>

> My baby is going to have a Ross Procedure done soon. The

> cardiologist said that there is some " muscle thickening " also, and he

> thinks the ross procedure wont help with that. He then stated that a

> heart Transplant may be her only hope.

> I have NO understanding of the process involved with this. It seems

> impossable to find ENGLISH answers to my questions.

>

> Will Medicade cover this?

> What are her chances of getting through the surgery?

> What are her chances of living a semi-LONG life?

>

> I feel like throwing up. Are the any parents out there who have delt

> with a heart transplant? I need FEEDBACK SOON PLEASE!!!!

>

>

>

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support group does not constitute membership in

> the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

She has had three open heart surgeries to correct blockages in her

aorta (sp?)... The Ross procedure is supposed to help with the

blockage, but the blockage is not my concern. Her heart muscles are

getting thicker every time we get an echo done. This is a sign of a

desease that cannot be corrected. Heart Transplant would be her only

option.

[Guest guest]

Oh, Crystal-

I don't know anything -- but I'm sending warm cyber hugs your way. I hope

you get some answers that ease your anxiety a bit. I know you won't rest

until your baby is through it all and healthy. After you've had time to

settle your mind a bit over the weekend, call the doctor's office and find

someone there who can talk you through these things. If it's like other

medical things, there's no guarantee and no 2 kids are the same so even if

someone's been through a transplant as well, their experience may be very

different from yours. It still helps immensely to share, but perhaps the

doctor is the only one who knows the truth of the procedure and it's likely

outcomes for your baby. And perhaps he can connect you with another family

whose child did have a similar situation. I'm just grasping. That's

probably how you're feeling right now - like you're reaching out for any

thread of knowledge and support. I hope you will find that here - and

elsewhere. What an incredibly difficult time for you. Hang in there.

Michele W

Aubrie's mom 8 yrs

[Guest guest]

Crystal-

I found some links to sites related to pediatric heart transplants. Some

provide support, others provide financial assistance. I didn't edit the

list because I thought it was best for you to see if any meet your needs

right now. Perhaps one will be the right place for the support and info you

are seeking.

Michele W

Aubrie's mom

American Share Foundation <http://web742d8.ntx.net/>

American Share Foundation's website is designed to provide information to

the transplant community, including patients, families, caregivers,

healthcare professionals, support networks, and the general public and does

not constitute medical advice.

http://www.asf.org

S. Abbott

Founder of American Share Foundation & ASCOT

E-mail: mailto:jabbott@... ( Abbott)

<http://www.cherubs.org/index.html> CHERUBS

CHERUBS is a non-profit organization formed to build a Communication

network, among other Help organizations, that will link people, Educational

leaders, Registration of " The Gift of Life " donors and Unification programs

for Babies' Sake.

http://www.cherubs.org/index.html

CHERUBS

P.O. Box 2292

North Bend, WA

98045

E-mail: mailto:CHERUBS@...

COTA <http://www.cota.org/> (Children's Organ Transplantation Association)

The Children's Organ Transplant Association provides fundraising assistance

for children needing life-saving transplants and promotes organ, marrow and

tissue donation.

National Transplant Assistance Fund <http://www.transplantfund.org/>

http://www.transplantfund.org/

6 Bryn Mawr Avenue

P.O. Box 258

Bryn Mawr, PA, USA 19010

Telephone: or

Fax:

e-mail: mailto:NTAF@...

The New England Organ Bank <http://www.neob.org/>

New England Organ Bank

One Gateway Center

Newton, MA 02458

Phone: 800-446-NEOB

E-mail: mailto:info@...

Transplant Connections <http://www.transplantconnections.com>

Here at Transplant Connections we believe we've put together the best and

biggest transplant directory and transplant resource site on the Internet.

We've got hundreds of pages, with hundreds of transplant links organized in

a way to help you review the " transplant " information you're seeking FAST.

Transplant Recipients International Organization <http://www.trioweb.org/>

(TRIO)

TRIO is a non-profit international organization committed to improving the

quality of lives touched by the miracle transplantation through support,

advocacy, education, and awareness.

Transplant Recipients International Organization, Inc.

2117 L St. NW # 353

Washington, DC 20037-1524

Toll Free

Fax:

E-mail: TRIOIntl@...

United Network for Organ Sharing <http://www.unos.org/frame_Default.asp>

The transplant community is joined under a nationwide umbrella: The United

Network for Organ Sharing (UNOS), a nonprofit charitable organization,

maintains the nationwide organ transplant waiting list under contract with

the Health Resources and Services Administration of the U.S. Department of

Health and Human Services.

World Children's Transplant Fund <http://wctf.org/>

The World Children's Transplant Fund (WCTF) is a unique and special

organization. Our mission is to provide as many opportunities as possible

for lifesaving pediatric transplant surgery to children of the world.

http://wctf.org

World Children's Transplant Fund

16000 Ventura Blvd.

Suite 103

Encino, California 91436

Telephone:

Fax:

E-mail: http://www.congenitalheartdefects.com/

[Guest guest]

Regarding the financial aspect, please talk with your social worker at the

hospital or through your local DDD (disability group) case worker and they will

definitely be able to put you in touch with the right people. The hospital goes

through this often and they are often the best resources.

Do you have a social and/or case worker?

crystal wrote:

She has had three open heart surgeries to correct blockages in her

aorta (sp?)... The Ross procedure is supposed to help with the

blockage, but the blockage is not my concern. Her heart muscles are

getting thicker every time we get an echo done. This is a sign of a

desease that cannot be corrected. Heart Transplant would be her only

option.

Amy McKinley

Mom to MIGHTY MAX -- cHArGE, 15 months old (13 months corrected)

maxupdate.blogspot.com

---------------------------------

Get your own web address for just $1.99/1st yr. We'll help. Yahoo! Small

Business.

[Guest guest]

Crystal:

Check out camericglobal.com. They may be able to answer questions you have.

They do International Pediatric Surgical Services, including (at least at

first perusal) ways to help you find financing. The website can get you a

phone number to call and talk to someone, or you can e-mail a question or

application. I didn't see anything specific to heart transplants, but I

have to believe they'd have the information.

Friends in CHARGE,

Marilyn Ogan

Mom of (14 yrs, CHARGE+ JRA)

Mom of Ken (17 yrs, Asperger's)

Wife of Rick

oganm@...

Please help. Heart Transplant.

My baby is going to have a Ross Procedure done soon. The

cardiologist said that there is some " muscle thickening " also, and he

thinks the ross procedure wont help with that. He then stated that a

heart Transplant may be her only hope.

I have NO understanding of the process involved with this. It seems

impossable to find ENGLISH answers to my questions.

Will Medicade cover this?

What are her chances of getting through the surgery?

What are her chances of living a semi-LONG life?

I feel like throwing up. Are the any parents out there who have delt

with a heart transplant? I need FEEDBACK SOON PLEASE!!!!

CHARGE SYNDROME LISTSERV PHOTO PAGE:

http://www.imagestation.com/album/?id=2117043995

Membership of this email support group does not constitute membership in the

CHARGE Syndrome Foundation; for information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter),

please contact marion@... or visit

the web site at http://www.chargesyndrome.org

8th International

CHARGE Syndrome Conference, July, 2007. Information will be available at

www.chargesyndrome.org or by calling 1-.

[Guest guest]

Crystal:

Also, in Indiana, Riley Children's Hospital has excellent results (better

than national averages) for transplantation. You may have seen them in the

news in the last few months for doing operations on children from

Afghanistan and Iraq. You can go to Clarian.org for more information on

heart transplants and their transplant team. It might be another contact

source for information.

Friends in CHARGE,

Marilyn Ogan

Mom of (14 yrs, CHARGE+ JRA)

Mom of Ken (17 yrs, Asperger's)

Wife of Rick

oganm@...

[Guest guest]

Crystal,

I dont know much about transplants, my heart goes out for you and your

family. I am in a group for support for moms with babies who have

heart problems http://groups.msn.com/BabiesandChildrenwithHeartProblems

They know so many anwsers!! Its a great group of moms for support.

Hugs to you all,

Crystal mom to (10), (3), and Eva (18 month CHARGEr) wife

to Dan in Illinois

-- In CHARGE , " crystal " wrote:

>

> My baby is going to have a Ross Procedure done soon. The

> cardiologist said that there is some " muscle thickening " also, and

he

> thinks the ross procedure wont help with that. He then stated that a

> heart Transplant may be her only hope.

> I have NO understanding of the process involved with this. It

seems

> impossable to find ENGLISH answers to my questions.

>

> Will Medicade cover this?

> What are her chances of getting through the surgery?

> What are her chances of living a semi-LONG life?

>

> I feel like throwing up. Are the any parents out there who have delt

> with a heart transplant? I need FEEDBACK SOON PLEASE!!!!

>

[Guest guest]

when my daughter was born, theytold us the only hope would be a heart

transplant, but that she may not qualify b/c she was so sick, she was

premature

and still in the NICU. Then her cardiolugsut thought possible the norwood

procedure might be the answer. another cardioilogist from the team sent her

records to Boston and Columbia IN NYC and decidede that they could try and fix

her heart in 3 stages. she only had 2 and it now appears the third may not be

necessary.

get another oninion, right away. where are you? you can or should also

contact hear surgeons in other states. you can do this via email, and you will

be surprised at how they may respond. we emaild 2 different drs this way,

explained our story/case. there are a lot of doctors that want to work with

challenged children like ours. and there are some that dont.

do research, see who is out there to help with your particular problem.

medicads should pay, and you may even get them to pay for the travel if its out

of state. they have for us.

i have researched childrens heart centers, this i belive was the ranking

Boston

CHOPS - Philly

Hopkins

UCLA

Columbia

cathie, mom to erika

[Guest guest]

Crystal,

My heart goes out to you. I haven't had to consider a transplant with Jack

but I know a little girl here in the UK who has recently had the gift of life.

Her name is Lucy Pearson and she is an incredible little girl. You can read

her story _http://freespace.virgin.net/lucyloo.pearson/_

(http://freespace.virgin.net/lucyloo.pearson/)

Did the Dr mention any other surgery options for your baby i.e the Ross

Konno procedure? This is where they also enlarge the left ventricular outflow

tract and remove thickened muscle. I did a bit of research on the Konno when

Jack was diagnosed with subaortic stenosis.

Good luck in your research and I hope you can get some proper answers from

the Drs.

I'll be thinking of you.

Elaine mum to Elise(14yrs) & Jack(9yrs) CHaRGE

Scotland

[Guest guest]

wow ive never heard of chargers having ransplants love to you

xxxxxxxxxxxxxxx

>

> Crystal,

> My heart goes out to you. I haven't had to consider a transplant with Jack

>

> but I know a little girl here in the UK who has recently had the gift of

> life.

> Her name is Lucy Pearson and she is an incredible little girl. You can

> read

> her story _http://freespace.virgin.net/lucyloo.pearson/_

> (http://freespace.virgin.net/lucyloo.pearson/)

> Did the Dr mention any other surgery options for your baby i.e the Ross

> Konno procedure? This is where they also enlarge the left ventricular

> outflow

> tract and remove thickened muscle. I did a bit of research on the Konno

> when

> Jack was diagnosed with subaortic stenosis.

> Good luck in your research and I hope you can get some proper answers from

>

> the Drs.

> I'll be thinking of you.

>

> Elaine mum to Elise(14yrs) & Jack(9yrs) CHaRGE

> Scotland

>

>

[Guest guest]

I have just read these and have no knowledge of this to help. Please Know

you will all be in my prayers. May you pass through this quickly and as easy

as possible.

Bonnie

[Guest guest]

Crystal

If the transplant is considered needed due to the thickening of your child's

heart muscles it maybe worth getting a second opinion. Take our

daughter. When she had her heart surgery to repair leaky valves in the 2

upper chambers and AVSD and a VSD the operation took 6 1/2 hours rather than

4 because the heart surgeons found very little space to work in the heart

due to the thickening of the muscles. The impression I got after the

operation talking to the surgeon was that they had thickened not due to

disease but the amount of work her heart had had to do. Mind you when the

surgeon comes in and plonks himself down with a comment 'that was hard work'

or something very similar relief that Jess had pulled through is more in

your thoughts.

This was 6 years ago now, has no medication and she sees the cardiologist

once a year. He is a very happy with her.

Simon (UK)

[Guest guest]

I have no answers for you, but want you to know that we are all saying

prayers for good guidance and results! Much love to you and your baby.

, mommy to Meagan (CHaRgE) and 2 year old twins, and big brother

4 years, married to the best daddy in the world for 9 years!

-- Please help. Heart Transplant.

My baby is going to have a Ross Procedure done soon. The

cardiologist said that there is some " muscle thickening " also, and he

thinks the ross procedure wont help with that. He then stated that a

heart Transplant may be her only hope.

I have NO understanding of the process involved with this. It seems

impossable to find ENGLISH answers to my questions.

Will Medicade cover this?

What are her chances of getting through the surgery?

What are her chances of living a semi-LONG life?

I feel like throwing up. Are the any parents out there who have delt

with a heart transplant? I need FEEDBACK SOON PLEASE!!!!

[Guest guest]

Crystal, in Argentina plenty of children receive heart transplant, and they

DO survive and live a long life. I've been searching for material in

English. Are you from US? Please take a look this page from Atlanta:

http://www.choa.org/default.aspx?id=693 It has info about heart transplants

and Ross procedure.

Please don't give up. We are here for you and your baby.

Vanesa

>

> My baby is going to have a Ross Procedure done soon. The

> cardiologist said that there is some " muscle thickening " also, and he

> thinks the ross procedure wont help with that. He then stated that a

> heart Transplant may be her only hope.

> I have NO understanding of the process involved with this. It seems

> impossable to find ENGLISH answers to my questions.

>

> Will Medicade cover this?

> What are her chances of getting through the surgery?

> What are her chances of living a semi-LONG life?

>

> I feel like throwing up. Are the any parents out there who have delt

> with a heart transplant? I need FEEDBACK SOON PLEASE!!!!

>

>

>

--

-------------------------

Vanesa Devetach

vanesa.devetach@...

[Guest guest]

Crystal

Amelie has hypertrophic cardiomyopathy (HOCM) without obstruction, as i

understand this its thickening on her left side of the heart, and most

patients who have this end up transplanted, Amelies was severe when detected

aged 6 weeks old, and they decided to leave her ASD, she has been on beta

blockers since then three times a day called propranolol, also some diuretis

twice daily, her last echo 4 weeks ago shows still muscle thickening but

there is some improvement, we were told it can go three ways worse better or

remain about the same, so I pray and hope a transplant is not necessary, it

could improve with time.

hugs Les x

>

> Crystal, in Argentina plenty of children receive heart transplant, and

> they

> DO survive and live a long life. I've been searching for material in

> English. Are you from US? Please take a look this page from Atlanta:

> http://www.choa.org/default.aspx?id=693 It has info about heart

> transplants

> and Ross procedure.

>

> Please don't give up. We are here for you and your baby.

> Vanesa

>

> On 10/14/06, crystal <peigelee6805@... <peigelee6805%40yahoo.com>>

> wrote:

> >

> > My baby is going to have a Ross Procedure done soon. The

> > cardiologist said that there is some " muscle thickening " also, and he

> > thinks the ross procedure wont help with that. He then stated that a

> > heart Transplant may be her only hope.

> > I have NO understanding of the process involved with this. It seems

> > impossable to find ENGLISH answers to my questions.

> >

> > Will Medicade cover this?

> > What are her chances of getting through the surgery?

> > What are her chances of living a semi-LONG life?

> >

> > I feel like throwing up. Are the any parents out there who have delt

> > with a heart transplant? I need FEEDBACK SOON PLEASE!!!!

> >

> >

> >

>

> --

> -------------------------

> Vanesa Devetach

> vanesa.devetach@... <vanesa.devetach%40gmail.com>

>

>