New to group

[Guest guest]

Hi

I am new to the list too. We have a son, with CF. We also have a

2 1/2 year old son Brendon wocf.

I am glad your son doesn't have tons to deal with.

Jodi

________________________________________________________________

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[Guest guest]

How lovely to read your account and to have you on board. We're lucky,

n Rojas

[Guest guest]

,

Welcome and Thanks for the link to the photo directory. I am new to the

group too! I posted a picture of my guy to the photo directory. Couldn't

pass up the opportunity to add to the list of GOOD looking kids with CF .

take care,

Christen, mom of 13 months wcf

New to group

> My name is . I am the daddy to who is three and a half years

old. was diagnosed with CF just before he turned three years old. He

did not show symptoms until he was about 22 months old, but even then it

took another year to figure out what was wrong. I guess he is one of the

lucky ones. I know he makes me feel like the luckiest daddy on earth every

time I look at him and hold him. He was eating as much as I was and not

gaining any weight. His stool became oily and colorless. We had taken him

to the doctor alot since he was born, for ear infections and sinus problems,

but they never made the connection to CF. It was not until we took him to a

CF doctor, purely by chance, that he was diagnosed and put back on track to

health and strength, which were both diminishing quickly. We had thought

before the diagnosis that he mat have food allergies and changed his diet

drastically. We were looking for glutin intolerence as well as lactose

intolerence. This hurt him badly due to the loss of the fat content he so

much needed. He lost weight during this time and had very little energy.

Once the diagnosis was made and I finally stopped crying, he started gaining

weight very quickly and even grew a couple inches. He is as big as many 5

year olds now and does not seem to be slowing down. He is very strong and

healthy, only needing to take his enzymes and do his respiratory and lung

therapy three times a day. He is the most loving child I have ever known. He

has a little brother now, who does nt have CF. Alek is 19 months old and

ornery as anything. They get along great, though Alek is kinda mean at

times. He is also a very loving child also. The doctors expect to

grow to over six feet tall and be a pretty big guy. I see no reason not to

believe this myself. I just want him to be able to do anything he wishes to

do and I will support him in all his endeavors. He deserves the best. Both

my boys do.

> As I have read in some other posts, 's diagnosis came as a complete

shock. There was known known history of CF on either my side or my

ex-wife's side. I do not even have much northern eoropean blood in me. She

sure does, though.

> I still cry when I think about it alot, but not as often. He is stronger

than I could ever be and I hope he will always be so strong.

> My wife now, Charlotte, is very supportive and we were married when

was diagnosed. She loves him and he loves her as much. She loves to do

's treatments with him. She treats him as if he were his own. She

even gets along well with my ex-wife. Probably better than I ever did! ;-)

> Well, we will be here, watching the posts and reading. Our best to all.

>

> Rich

>

>

> Also, there is a photo directory for children/adults with CF located at

the following link. Please send them a pic and spread the word.

>

> http://www.cysticfibrosis.co.uk/photodirectory.htm

>

> is there.

>

>

>

[Guest guest]

Hello , Charlotte, and Alek,

Welcome to a wonderful group of people. I have learned so much from the

folks on here, my son was diagnosed at 5 months old, he is now 16

months, and doing wonderful. I still sit and cry, and at times get a bit

angry that this had to happen to my baby boy, but he is a great kid. He is

very loving to his brother and sisters, as they are to him. My husband and I

had no idea that cf was anywhere in the families, especially is about

the 50th great grandchild on my side, and this has not shown its face until

was diagnosed.

The hardest thing to face right now is the fact that most people just dont

understand the disease, nor do they seem to want to learn. They give advice

that they know nothing about, that is why it is so great to be able to come

here and vent, laugh, cry or whatever, and you are allowed to cry and

everyone is supportive.

So welcome, and hope all is well with you and yours./

, mommy of 4, , 15 with a much older mind, Caleb, 6 and a

kindergarten pro, finally, , 4 1/2 and the next famous artist, and

, 15months with CF and reflux and a beautiful smile and bright blue eyes

[Guest guest]

charlotte, thank god he has a stepmother like you, i sometimes feel when

people ask how are my girls doing they really don't want to really know, patty

[Guest guest]

Hello Charlotte,

Yep, the kiddies are tougher than their parents I believe. They have such

wonderful personalities. And please dont blame yourself, had been sick

since he was born, and his first ped told us to start him on jar food when he

was 5 months old, and only 8 1/2 pounds and had projectile vomitting and a

whole lot of poop. I knew something wasnt right, he is my youngest of 4, and

he just wasnt like the other kids.

Not a crying kind of baby, just quiet and not seeming to be interested in

anything even as he got older. I think I knew that whatever was wrong, was

something that couldnt be fixed with just a vitamin, but I was sure that is

wasnt what the new ped said it could be, and that was Cystic Fibrosis. I

remember those words hitting me in the stomach, and it was like all the air

had left my body.

Now I look at my robust little 25 pounder, who has blondish red hair, big

blue eyes and the most beautiful smile, and I think about the rough beginning

of his life, and how much better he is now, and I thank God that someone

could finally give me an answer as to what was wrong with my baby, and that

it could be worked on to make him as healthy as possible.

Well, I am glad that you have found this wonderful place to share your hopes,

fears and dreams, because if we didnt have each other in this, there would be

alot of very lonely cf moms, dads, grandparents, siblings and cfers

themselves that would have no where to turn for help or advice when it is

needed.

Love

, mommy of 4, , 15 with a much older mind, Caleb, 6 and a

kindergarten pro, finally, , 4 1/2 and the next famous artist, and

, 15months with CF and reflux and a beautiful smile and bright blue eyes

[Guest guest]

Welcome; we get a little seasick in any group, but by and large as we cruise

along, the ship rights itself and we are always there for one another; as

both a cfer and a parent of one, I can certainly fully understand your

feelings; at least I had had a crash course in case management! Good luck,

and I will look forward to seeing more of what you have to say on line,

n Rojas wcf, mom of 3, 1 wcf--all grown up; hard to tell about mom,

though!

[Guest guest]

n, what is your genotype? And how old is your " grownup " child? Thanks.

Kathleen

[Guest guest]

Hi, Kathleen; most of us in our family are a combination of Mediterranean

genotypes; mine is R117H/R5330and they can't determine whether it is really X

or S, after all this testing. I'm guessing X as that is a " stop " enzyme

which means

that merely upping CFTR would solve half of my problem; the folks in my

family who have R117H/DeltaF508 (few) are the ones who are really sick. As I

was clever enough back in the late 50's to marry a man who had a strain of

Mediterranean in

him we ended up with the 3d child having the same genotypes (and confusions)

as

mine. It would be so convenient if they were all readily identifiable. I am

62; my daughter (#3) is 34, the others are, of course, carriers, and I have a

huge number of first cousins and their children and grandchildren with cf,

too. There is a host of

plagues and pestilences that we all have, some, not usually thought to be

typical of

our genotype, but there you have it, or rather we do. My oldest living

cousin with cf

works at home for a newspaper and is on 02; he is 69+; some have died very

young, some in their teens, some in mid adulthood, and some--well, here I am.

I have sig-

nificant medical problems but not major loss of the tissue lining the lungs,

just some

rather significant scarring. I do have bronchiectasis, but about 60% lung

capacity;

I do have pancreatic insufficiency of great severity and thoroughly

documented, and

we won't even discuss the roto-rooter and successful sinus surgery with

Tobramycin

infused into the sinuses each month, which has helped my lungs. I have gall

stones

which may come out this year and mild liver disease, that is, elevated

enzymes. The real key to my survival is probably a combination of really

good compliance, life-long, and some interesting things on chromosome 19

which are found in most who

survive serious illness. We are reasonably sure that my mother's older

brother died

due to cf and that my father's mother did, too, and there are other relatives

who died

in their thirties, having never smoked, due to lung disease. Rick Moss,

M.D., of Stanford University, here in California, has always said that it's

30% genetics and 70% really good medical care and compliance, including

attention to the esophagus

and epigastrum. They have now found about 900 mutations and more are to come,

so as Barbara Palys of IACFA says, we know there are even more mutations

unidentified out there, and this must be a very old gene that has been many

places.

I hope this helps,

n Rojas

[Guest guest]

linda and others,

i understand what you mean by people not wanting to really understand this

disease. i have often told people about bryan and they seem to pass it by like

it is just an eating disorder or something. frankly, it hurts my feelings.

bryan is my step-son but that doesnt stop me from loving him more and more

everyday. i knew that was something had to be wrong with him when he was about

1 1/2 old because he stools were very bad and oily... bad bad bad gas, his

yellow skin color and many other things too.... ate all the time, ear

infections, cough, all the congestion problems he had and also, he was never a

Normal baby... he never felt good so he was TOO good. it makes me so sad to

think about it all because i feel responsible in a way. i knew something was

wrong yet we never took him to a major hospital. he had been to at least 10

differant doctors since his birth and they never said anything about CF. i wish

they had of. he is such a beautiful boy and i hope one day they have a cure for

our children. it is not fair for them. i breaks my heart. how do you tell

them they have this disease? he knows he has CF but how do you tell them there

is no cure right now? i try not to think about all this too much because it

will bring you down quit a bit. seeing such joy in bryan though makes me feel

he will be ok. he gives me hope. it is funny how children are sometimes

stronger than we are...

charlotte banks

cookeville tn

Re: New to group

Hello , Charlotte, and Alek,

Welcome to a wonderful group of people. I have learned so much from the

folks on here, my son was diagnosed at 5 months old, he is now 16

months, and doing wonderful. I still sit and cry, and at times get a bit

angry that this had to happen to my baby boy, but he is a great kid. He is

very loving to his brother and sisters, as they are to him. My husband and I

had no idea that cf was anywhere in the families, especially is about

the 50th great grandchild on my side, and this has not shown its face until

was diagnosed.

The hardest thing to face right now is the fact that most people just dont

understand the disease, nor do they seem to want to learn. They give advice

that they know nothing about, that is why it is so great to be able to come

here and vent, laugh, cry or whatever, and you are allowed to cry and

everyone is supportive.

So welcome, and hope all is well with you and yours./

, mommy of 4, , 15 with a much older mind, Caleb, 6 and a

kindergarten pro, finally, , 4 1/2 and the next famous artist, and

, 15months with CF and reflux and a beautiful smile and bright blue eyes

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

The opinions and information exchanged on this list should

IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

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

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[Guest guest]

patty

thank you. how many children do you have with cf?

charlotte

Re: New to group

charlotte, thank god he has a stepmother like you, i sometimes feel when

people ask how are my girls doing they really don't want to really know, patty

***********************

This is a secular list.

***********************

PLEASE do not post religious emails to the list.

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

The opinions and information exchanged on this list should

IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

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

Our webpage is at http://www.eohio.net/malbright/cfparents.htm

_________________________________________________

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[Guest guest]

and others

I know what you mean by people not knowing what cf is. I work in a medical

clinic and the patients know something is wrong with Eilish and when I tell them

they just say poor thing. But if I ask them do they know what it is they dont.

So know I've put two newspaper articles on the wall that Eilish has been in, and

if someone asks what it is I tell them to read the article as it sets out all

the treatment, enzymes, ports etc. Then they get a shock. Some people I notice

get it muddle with muscluar dystrophy, as numerous people used to ask me when

she was a baby,'wont she be able to walk " ? It's also a hard one to fundraise

for as the children look healthy. If they had no hair or one arm missing

everyone would help. And that is really annoying.

Take Care

Re: New to group

Hello , Charlotte, and Alek,

Welcome to a wonderful group of people. I have learned so much from the

folks on here, my son was diagnosed at 5 months old, he is now 16

months, and doing wonderful. I still sit and cry, and at times get a bit

angry that this had to happen to my baby boy, but he is a great kid. He is

very loving to his brother and sisters, as they are to him. My husband and

I

had no idea that cf was anywhere in the families, especially is about

the 50th great grandchild on my side, and this has not shown its face until

was diagnosed.

The hardest thing to face right now is the fact that most people just dont

understand the disease, nor do they seem to want to learn. They give advice

that they know nothing about, that is why it is so great to be able to come

here and vent, laugh, cry or whatever, and you are allowed to cry and

everyone is supportive.

So welcome, and hope all is well with you and yours./

, mommy of 4, , 15 with a much older mind, Caleb, 6 and a

kindergarten pro, finally, , 4 1/2 and the next famous artist, and

, 15months with CF and reflux and a beautiful smile and bright blue

eyes

***********************

This is a secular list.

***********************

PLEASE do not post religious emails to the list.

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

The opinions and information exchanged on this list should

IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

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

Our webpage is at http://www.eohio.net/malbright/cfparents.htm

_________________________________________________

Post message: cfparentsegroups

Subscribe: cfparents-subscribeegroups

Unsubscribe: cfparents-unsubscribeegroups

List owner: cfparents-owneregroups

_________________________________________________

WE HAVE A CHAT PAGE!!!

/chat/cfparents

_________________________________________________

[Guest guest]

n,

Do you know if some genotypes mean a poorer outcome. To me its seems deltaF508

is a worse one. Eilish has that one from her father and I think mine is G551d

but Im not sure if that's exactly true. My son doesn't have any and not even a

carrier.

Re: New to group

Hi, Kathleen; most of us in our family are a combination of Mediterranean

genotypes; mine is R117H/R5330and they can't determine whether it is really X

or S, after all this testing. I'm guessing X as that is a " stop " enzyme

which means

that merely upping CFTR would solve half of my problem; the folks in my

family who have R117H/DeltaF508 (few) are the ones who are really sick. As I

was clever enough back in the late 50's to marry a man who had a strain of

Mediterranean in

him we ended up with the 3d child having the same genotypes (and confusions)

as

mine. It would be so convenient if they were all readily identifiable. I am

62; my daughter (#3) is 34, the others are, of course, carriers, and I have a

huge number of first cousins and their children and grandchildren with cf,

too. There is a host of

plagues and pestilences that we all have, some, not usually thought to be

typical of

our genotype, but there you have it, or rather we do. My oldest living

cousin with cf

works at home for a newspaper and is on 02; he is 69+; some have died very

young, some in their teens, some in mid adulthood, and some--well, here I am.

I have sig-

nificant medical problems but not major loss of the tissue lining the lungs,

just some

rather significant scarring. I do have bronchiectasis, but about 60% lung

capacity;

I do have pancreatic insufficiency of great severity and thoroughly

documented, and

we won't even discuss the roto-rooter and successful sinus surgery with

Tobramycin

infused into the sinuses each month, which has helped my lungs. I have gall

stones

which may come out this year and mild liver disease, that is, elevated

enzymes. The real key to my survival is probably a combination of really

good compliance, life-long, and some interesting things on chromosome 19

which are found in most who

survive serious illness. We are reasonably sure that my mother's older

brother died

due to cf and that my father's mother did, too, and there are other relatives

who died

in their thirties, having never smoked, due to lung disease. Rick Moss,

M.D., of Stanford University, here in California, has always said that it's

30% genetics and 70% really good medical care and compliance, including

attention to the esophagus

and epigastrum. They have now found about 900 mutations and more are to come,

so as Barbara Palys of IACFA says, we know there are even more mutations

unidentified out there, and this must be a very old gene that has been many

places.

I hope this helps,

n Rojas

eGroups Sponsor

***********************

This is a secular list.

***********************

PLEASE do not post religious emails to the list.

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

The opinions and information exchanged on this list should

IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

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

Our webpage is at http://www.eohio.net/malbright/cfparents.htm

_________________________________________________

Post message: cfparentsegroups

Subscribe: cfparents-subscribeegroups

Unsubscribe: cfparents-unsubscribeegroups

List owner: cfparents-owneregroups

_________________________________________________

WE HAVE A CHAT PAGE!!!

/chat/cfparents

_________________________________________________

[Guest guest]

Hi Charlotte and !

I have not written much lately - I think I have not written

for ages. I have only just managed to read a couple of mails

and I think I will have to read all weekend to be up-to-date

again ;-)

My son is 5, now. He was dx at approx. 8 months. I am

so glad we saw a doctor who knew what she was doing!!!

He has been fine ever since, apart from a PA infection 3

years ago which was treated by 2 weeks IV and 360 days Tobra

inhalations twice a day. (no PA since then - knock on wood).

We are seeing his CF clinic next Tuesday. Then we will know

more especially concerning his weight as he has always been

a very bad (really very, very bad) eater.

Charlotte, you were wondering how to tell the child about

there being no cure right now. I do not talk to about

there being no cure, as I truly believe there will be

something sometime. And if it might not be a cure it surely

will be something very close to it. I am sure that our

children will not have as many problems with cf as most

older patients have had in the past.

knows he has cf. He knows that no one else around

here (in the " wilds " ) has cf and that he has to take meds

and do things that other children do not do. What really

makes him angry every now and then is the " water issue " .

I wish you both all the best with your children. Take care

Caroline

with Talau 10 in 10 days nocf, 5 with cf

Charlotte Banks wrote:

" ... he is such a beautiful boy and i hope one day they have

a

cure for our children. it is not fair for them. i breaks

my heart. how do you tell them they have this disease? he

knows he has CF but how do you tell them there is no cure

right now? i try not to think about all this too much

because it will bring you down quit a bit. seeing such joy

in bryan though makes me feel he will be ok. he gives me

hope. it is funny how children are sometimes stronger than

we are... "

[Guest guest]

Hi Charlotte and !

I have not written much lately - I think I have not written

for ages. I have only just managed to read a couple of mails

and I think I will have to read all weekend to be up-to-date

again ;-)

My son is 5, now. He was dx at approx. 8 months. I am

so glad we saw a doctor who knew what she was doing!!!

He has been fine ever since, apart from a PA infection 3

years ago which was treated by 2 weeks IV and 360 days Tobra

inhalations twice a day. (no PA since then - knock on wood).

We are seeing his CF clinic next Tuesday. Then we will know

more especially concerning his weight as he has always been

a very bad (really very, very bad) eater.

Charlotte, you were wondering how to tell the child about

there being no cure right now. I do not talk to about

there being no cure, as I truly believe there will be

something sometime. And if it might not be a cure it surely

will be something very close to it. I am sure that our

children will not have as many problems with cf as most

older patients have had in the past.

knows he has cf. He knows that no one else around

here (in the " wilds " ) has cf and that he has to take meds

and do things that other children do not do. What really

makes him angry every now and then is the " water issue " .

I wish you both all the best with your children. Take care

Caroline

with Talau 10 in 10 days nocf, 5 with cf

Charlotte Banks wrote:

" ... he is such a beautiful boy and i hope one day they have

a

cure for our children. it is not fair for them. i breaks

my heart. how do you tell them they have this disease? he

knows he has CF but how do you tell them there is no cure

right now? i try not to think about all this too much

because it will bring you down quit a bit. seeing such joy

in bryan though makes me feel he will be ok. he gives me

hope. it is funny how children are sometimes stronger than

we are... "

[Guest guest]

Gosh, ever since I outgrew being a preemie, I've looked pretty good and I am

grate

ful to be geriatric and " look good, " but I sure do get tired of the hospital

staff who

want to take 20 years off my age--I don't look THAT good; my youngest, who

has cf, is tired, at 34, of looking 17 max, too, and she usually " looks

good, " too. I looked

awful once--just before my hysterectomy, sorry guys, but with pneumonia and

102 degrees and pink cheeks, I'm half dead, but I " look good. " It's a CF

thing,

n Rojas wcf

[Guest guest]

Last week, my husband, Larry, was diagnosed with PSC based on ERCP and

liver biopsy. The biopsy showed that he already has cirrhosis, though

he is largely asymptomatic (just some fatigue from time to time and

noticeable jaundice).

We are scared, of course, and still a bit in shock. Based on his lab

profile, we expected the PSC diagnosis, but were not expecting the

cirrhosis. The messages from this group have already been a great

comfort and source of information for me. We are also blessed and

cursed that Larry is a doctor (he's a resident in Preventive Medicine

and Public Health) -- blessed because we can understand the medical

mumbo jumbo, cursed because we also know what can go wrong.

We are scheduled to go to Birmingham next Wednesday for evaluation. I

was wondering if anyone knows anything about the transplant center at

UAB? Any info would be greatly appreciated.

Thanks,

Nellie

(wife of Larry (31) PSC-09/04

[Guest guest]

”We are scared, of course,

and still a bit in shock.”

Nellie,

I know the feeling well.

I was about the same age as Larry is now when I was diagnosed with PSC, on

operation for cholecystectomy and confirmation of what turned out to be a

misdiagnosis of PBC. Those who have been around this group know my case

history, so I won’t retell it here. If you’re interested you can

read Part I on the Group website. One of these days I’ll finish Part II

and post it.

As we always say,glad you

found us, sorry you had to. You’ll find this an excellent place find

information and emotional support.

Steve

Rahn

PSC Dx '80 - L

Tx 9/6 & 9/8 '85 (Wash.

U-STL)

Recurring PSC '02

- (re)Re-Born July 4, 2003(re-Tx U of IA)

" Solve the problem, not the

solution " D. Kamen

[Guest guest]

Dear Nellie,

I can empathize with you on so many levels, but I feel somehow

connected because I'm right in your age range, too. I'm turning 32 in

December, and I've been diagnosed since 1998. Sometimes finding out

later is a blessing because you get to live without having to wonder

what if! Now that you do know, I'm sure Larry's medical training will

serve him well. However, and I say this having two doctors in the

family, you might remind him to turn off the doctor part of him once

in a while and just let the " what if's " and " most patients " drift

from his mind. My doctor, when he diagnosed me, said that he believed

that I'd need a new liver in about five years based on how long I'd

had the symptoms and how it was progressing. Well, I'm well into my

sixth year and coming up on my seventh in March. I always try to be

one of the exceptions to the rule where the doom and gloom is

forecast. Although the PSC journey isn't an easy one, being part of a

group like this sure helps the navigation become a little easier. I

wish you all the best during this difficult time post-diagnosis.

Deb in VA

AIH 1997, PSC 1998, UC 1999, Listed Ltx 2001, MELD 19 (? New blood

draw this week...)

> Last week, my husband, Larry, was diagnosed with PSC based on ERCP

and

> liver biopsy. The biopsy showed that he already has cirrhosis,

though

> he is largely asymptomatic (just some fatigue from time to time and

> noticeable jaundice).

>

> We are scared, of course, and still a bit in shock. Based on his lab

> profile, we expected the PSC diagnosis, but were not expecting the

> cirrhosis. The messages from this group have already been a great

> comfort and source of information for me. We are also blessed and

> cursed that Larry is a doctor (he's a resident in Preventive

Medicine

> and Public Health) -- blessed because we can understand the medical

> mumbo jumbo, cursed because we also know what can go wrong.

> > Nellie

> (wife of Larry (31) PSC-09/04

[Guest guest]

Dear Nellie,

I have had insurance clients who had very good experiences at the

transplant center at UAB, I hope you will have the same for your

husband. I also hope that further analysis will find that his

condition is somewhat managable and he will not require a transplant

at his young age. I have been living with UC and PSC for 35+ years

with the help( for all 35 years) of Drs. Ferrante and Louis

Ballart and the Center for Digestive Diseases at LSU Medical in New

Orleans. If he would like a suggestion of an alternate choice, I can

recommend them with much experience to back it up and he is welcome

to say I referred him. Their emphasis has always been agressively

managing the disease damage with corrective surgery and medication.

I have had very good results and many good years. They have employed

preventive strategies over the years that included scope work on

obstructions, creation of a stricture valve at the opening of the

common duct, long term use of various antibiotics, elimination of

heavy metals, and colostomy to avoid colon cancer. I hope he is

feeling better soon and finds the right people to work with him.

Tee ( T. McCoy, CEBS Des Allemands, LA)

> Last week, my husband, Larry, was diagnosed with PSC based on ERCP

and

> liver biopsy. The biopsy showed that he already has cirrhosis,

though

> he is largely asymptomatic (just some fatigue from time to time

and

>

> We are scheduled to go to Birmingham next Wednesday for

evaluation. I

> was wondering if anyone knows anything about the transplant center

at

> UAB? Any info would be greatly appreciated.

>

> Thanks,

> Nellie

> (wife of Larry (31) PSC-09/04