new to the group

[Guest guest]

hello jean and welcome to the group.

You sound so very proud of so don't let any report in the world take

any of that away from you.

What better way to deal with our children than to focus on their positives

and simply accept the negatives as part of the package that is our child.

It has only been very recently that I have really noticed that Bobby (just

3) is behind other children with his speech and other problems. I accept

these are problems because I want the best we can get from this world for

him. They aren't problems to him though, he is the happiest most loving

child I ever met.

Best wishes to you and your family

Helen

New to the Group

Hello! My name is Maxwell. My husband, Mark, and I are the proud

parents of Maxwell (MDS) who was born on September 18, 1999. We

live in Lorain, Ohio. I have three other children from a previous

marriage- (soon to be 18), Garrett 16, and Jillian 15. Mark has two

daughters from a previous marriage- 13 3/4 and Paige 10 1/2.

Yours, mine, and ours-we are like the Brady Bunch. I became pregnant with

just before my 41st Birthday. Because of my age, my doctor was

concerned and had sent me for a Level 2 sonogram. Everything appeared to be

normal. That is when I found out the gender of the baby. I did not choose

to go for an Amnio, because I am scared of needles and what ever resulted

from the test was not going to change my mind to love and give birth to this

baby. I did give birth to our 7 lb. baby boy on September 18, 1999. He was

a very alert strong baby. At his 4 month check-up in January, our

pediatrician Dr. Sandoval noticed that seemed to be double jointed

and he had low muscle tone. He kept staring at 's hand telling me

something about a crease. He referred me to a neurologist at the Cleveland

Clinic. In March, went through an MRI and everything looked normal.

He also sent us for some blood work, but they did not perform one of the

tests that our pediatrician thought that they should have. He called the

neurologist and we had to go back in for the blood work in late April, early

May. The results did show that has Mosaic Down's Syndrome. The

neurologist did suggest that I get in touch with early intervention, which I

got him started in that program right away. went to numerous

doctor's and had series of tests. He went to a geneticist, pulmonologist,

pediatric ENT, heart specialist, endocrinologist, etc. The only problem

that came up is Asthma, so we visit the pulmonologist every 4 months or so.

is a very happy, loving child. He is very affectionate. When he

first started to crawl he looked like a frog. He did work with a physical

therapist to make his low muscle tone stronger. He also worked with an

occupational therapist to help him feed himself-using a fork, spoon, etc.

He progressed well reaching all their goals, so they dismissed him. I think

is doing great and may be slightly behind some of the other kids his

age. But early intervention stops at age 3 and they start preparing him for

school. My Early Intervention Consultant tried to tell me that they always

tell me the positive and then we set goals on want we need to work on, but

she said when you go for a SERRC assessment, they will tell you all the

things that cannot do. She tried to warn me that it is not a real

positive report. did go for his assessment and I thought he did

very well for all the toy distraction in the room and for three people

demanding things of him. They told me that his communication skills level

is at the age of 24 months and that his skill level was at about 28 months.

That had me a little down, until I received the written report. I cried as

I read it. I guess I never see that he does have a handicap and I just see

all the great things that he is doing. He is going to be assessed by the

Child Developmental Center tomorrow. I did stop there last week to see what

the facility was like and I am going to meet with them next week to see what

their assessment is of him. does attend a day care center while my

husband and I are at work. (During the summer he stayed home with his

brother and sisters.) The day care does have a preschool program, which I

thought would be good enough. Child Development talked to me about sending

him to their facility three days a week. They want him to take a public

school bus from the day care to the center for a few hours three times a

week. is just going to be three and he will not start school for

three years. I just thought it would be a bit much for him. I also don't

want him to ride a bus at such a young age. They did tell me about a one da

y program that they had available on Fridays where he would see a speech

therapist who works off of computer programs to encourage their speech. She

showed me a Toddle Reader Rabbit program which I thought was great. I

bought it for home and tried it last night for the first time. He

now has a new word " elbow " which he was quite proud of. I do realize that

is slightly behind in his speech, but I didn't think that he was a

whole year behind. We will see what the developmental center has to say.

When I first found out that has Mosaic Down's Syndrome, I did search

the internet and found very little information on it. I don't know why I

decided to check the other day, but I am certainly happy that I found this

site and have received all the e-mails with your information sharing. It

certainly makes you feel better to know that there are other children out

there like and other parents going through the same problems and

successes of their precious child. I always said that maybe

received all the good things about MDS-the happiness and affection that he

shows. Thank you for this wonderful site and all the great information that

you are sharing.

Take care,

mother to MDS (soon to be 3), 17, Garrett 16, and

Jillian 15

[Guest guest]

Greetings Bob, Pam, and !

What a treat to have so many new folks here in our group! I am Barb

Martz, and I live in rural western Pennsylvania. My husband Bob and I have

been married for 16 years, and we have our oldest son who is soon to

be 8 years old, and Jonas who is 28 months. " Sir Jonas " (king of the

castle) has MDS. We have our story on the personal stories page of

www.mosaicdownsyndrome.com under our surname Martz if you want to read about

our little miracle of a baby! (Proud Mom). Jonas was born with two holes

in his heart and so far, one has closed of it's own accord, and the other

one may need to be worked on between the ages of 3 and 5 per his

cardiologist. We continue to pray that the second hole closes and that he

will not ever need the open heart surgery. Jonas is walking, running,

climbing like a little monkey, and is showing us in many ways that he is

understanding a great deal of what we say to him. He only has a few words

in his vocabulary so far, and has some feeding issues that are getting

better as we go. He is active and beautiful, and we are a richer family for

his presence among us.

I would love to hear some of your story. How old was when you

knew he had MDS, and how was it for you in dealing with school, and so

forth? How is doing now? and what is your best advice to us moms and

dads who are just starting this journey? I look forward with joy to learning

more about your family and especially the young man !

Barb Martz

Mom to Jonas (MDS) 2 & 7

---- Original Message -----

To: <MosaicDS >

Sent: Tuesday, March 25, 2003 12:38 PM

Subject: New to the Group

> Hello Everyone,

>

> We are Bob, Pam and McKinney. Bob and Pam are parents of

> who is 23 year old and has MDS. We live just North of

> Pensacola, FL. We look forward to being part of the Yahoo MDS Group,

> knowing your insight and experiences may help us and perhaps we may

> be of some help ourselves to you. We would like to hear from anyone

> who feels like writing..

>

> Sincerely, Bob McKinney

>

>

>

> Won't you please consider adding your personal story on the MDS website

today? http://www.mosaicdownsyndrome.com

> *************************************************

> Become a member of IMDSA at http://www.imdsa.com

> *************************************************

> MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus

> *************************************************

>

[Guest guest]

Bob, Pam, and ,

Welcome to the group!! My name is Sherry and my daughter, ,

has MDS, we live near Knoxville, Tennessee. is approximately 18%

affected by MDS, she is doing very well. I am the National Publicity

Chairperson for the International Mosaic Down Syndrome Association, and I

would like to encourage your family to join IMDSA by becoming a member and

helping support our organization. I look forward to hearing more from your

family as you are the real experts, the parents of older children and adults

with MDS. I'm sure your family's advice and experiences will be of great

value to all of us on this group. If there is ever any way I can be of

assistance to your family, please let me know. Once again, welcome!

Sincerely,

Sherry

(Mom to ,2yrs.old with MDS)

e-mail: IMDSAPublicityCR@...

[Guest guest]

--Dear Bob, Pam and ,

Welcome to our extended family!!! My name is , my husband is

Dave and our son is Jakob. He is 8 years old and in 2nd grade. We

got his MDS diagnosis when he was in kindergarten. We live in

Northcentral Pennsylvania. I hope to hear more about in your

future posts.

Take care!

(Mom to Jakob, 8 MDS)

- In MosaicDS , " Bob " <Kwazywabit@c...> wrote:

> Hello Everyone,

>

> We are Bob, Pam and McKinney. Bob and Pam are parents of

> who is 23 year old and has MDS. We live just North of

> Pensacola, FL. We look forward to being part of the Yahoo MDS

Group,

> knowing your insight and experiences may help us and perhaps we

may

> be of some help ourselves to you. We would like to hear from

anyone

> who feels like writing..

>

> Sincerely, Bob McKinney

[Guest guest]

Hi,

I am also new to the group. My dad was recently diagnosed cirrhosis. He has

Alpha 1. Our GI and Interist have decided to refer him to Methodist hospital in

Dallas for a transplant evaulation. We hope to get in quickly. Has anyone is

group ever discuss the partial liver donation with their transplant team? Just

wondering . . . what we can expect when we bring up that question.

I am gaining all kinds of knowledge from this group and appreciate everyone's

honesty in dealing with this horrible issue.

Thank you!

Dana Kinney wrote:

Hi,

I wanted to introduce myself to the group. My mom is suffering from cirrhosis

and we are just looking for a place to find more information and seek support as

she waits on the transplant list. Moms cirrhosis is a form called NASH nor non

alcoholic stethohepitits.

She is number one in the region for her blood type now, and we've been that way

for 24 days. It's hard to watch her go through this, and be powerless to stop

it. Whenever our phone rings we all jump hoping it's the call from the hospital,

but it's always just more friends or family calling to check on her. Sometimes I

wish they'd stop calling because I don't want to hear the phone ring unless it's

the hospital telling us they have a liver for her. But I know they are just as

worried as we are, and I have to remind myself that they are our support right

now. Does anyone have any tricks to help them handle the stress of it all while

we wait?

Thanks

Dana

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

Ready for the edge of your seat? Check out tonight's top picks on Yahoo! TV.

[Guest guest]

Hi, Dana. My name is Bobby, http://billybobswildride.blogspot.com/and I have

ESLD secondary to alcoholism. I do have a suggestion. There is an online

organization called caring bridge. It is a bridge to your loved ones. You could

start a web page, ans send an e-mail to ask for no phone calls, and update that

web page, (it is VERY easy, and user friendly, if you can send email, you can

have a caringbridge page), people can peek in, log in to the guest book. Then

your mom can read all the well wishes left in the guest book. The link is

http://www.caringbridge.org/

New to the group

Hi,

I wanted to introduce myself to the group. My mom is suffering from cirrhosis

and we are just looking for a place to find more information and seek support as

she waits on the transplant list. Moms cirrhosis is a form called NASH nor non

alcoholic stethohepitits.

She is number one in the region for her blood type now, and we've been that

way for 24 days. It's hard to watch her go through this, and be powerless to

stop it. Whenever our phone rings we all jump hoping it's the call from the

hospital, but it's always just more friends or family calling to check on her.

Sometimes I wish they'd stop calling because I don't want to hear the phone ring

unless it's the hospital telling us they have a liver for her. But I know they

are just as worried as we are, and I have to remind myself that they are our

support right now. Does anyone have any tricks to help them handle the stress of

it all while we wait?

Thanks

Dana

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

Ready for the edge of your seat? Check out tonight's top picks on Yahoo! TV.

[Guest guest]

,

Our transplant coordinator asked me about considering doing it. Mom is dead

set against it as of right now, she doesn't want to risk me at all. I am a blood

match B+. I've been just kind of talking to her about it and letting her know

that the team would use as much care with me as they will her, and the risks to

me are minimal.

My understanding is that only a few transplant centers can do living donor

livers to date, but they are working on getting more and more qualified to do

it. Thankfully for me, we happen to be at the only one in our state that does.

I do know that a potential living donor is closely typed match for not only

blood, but also tissue and antiogens. Then if blood and tissue matches you can

go ahead and have liver enzyme tests to make sure the donors liver isn't

diseased. After all that then you'd have to have a biopsy to check out the

physical condiition of the donor liver to make sure there isn't too much fat, or

a condition not indicated by the enzymes tests. Theres also CT scans in there

somewhere. I'm also not sure on how sick a person has to be to consider a living

donor transplant. Our tx center is talking about it with a MELD score of 18 but

I had a message from someone earlier that had a MELD of 11 and the tx center

didn't want to consider it yet.

Hope all goes well for you and your dad.

Dana

s hartman wrote:

Hi,

I am also new to the group. My dad was recently diagnosed cirrhosis. He has

Alpha 1. Our GI and Interist have decided to refer him to Methodist hospital in

Dallas for a transplant evaulation. We hope to get in quickly. Has anyone is

group ever discuss the partial liver donation with their transplant team? Just

wondering . . . what we can expect when we bring up that question.

I am gaining all kinds of knowledge from this group and appreciate everyone's

honesty in dealing with this horrible issue.

Thank you!

Dana Kinney wrote:

Hi,

I wanted to introduce myself to the group. My mom is suffering from cirrhosis

and we are just looking for a place to find more information and seek support as

she waits on the transplant list. Moms cirrhosis is a form called NASH nor non

alcoholic stethohepitits.

She is number one in the region for her blood type now, and we've been that way

for 24 days. It's hard to watch her go through this, and be powerless to stop

it. Whenever our phone rings we all jump hoping it's the call from the hospital,

but it's always just more friends or family calling to check on her. Sometimes I

wish they'd stop calling because I don't want to hear the phone ring unless it's

the hospital telling us they have a liver for her. But I know they are just as

worried as we are, and I have to remind myself that they are our support right

now. Does anyone have any tricks to help them handle the stress of it all while

we wait?

Thanks

Dana

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

Ready for the edge of your seat? Check out tonight's top picks on Yahoo! TV.

[Guest guest]

Bob,

Thanks for the suggestion!

Dana

Bob Aragon wrote:

Hi, Dana. My name is Bobby, http://billybobswildride.blogspot.com/and I have

ESLD secondary to alcoholism. I do have a suggestion. There is an online

organization called caring bridge. It is a bridge to your loved ones. You could

start a web page, ans send an e-mail to ask for no phone calls, and update that

web page, (it is VERY easy, and user friendly, if you can send email, you can

have a caringbridge page), people can peek in, log in to the guest book. Then

your mom can read all the well wishes left in the guest book. The link is

http://www.caringbridge.org/

New to the group

Hi,

I wanted to introduce myself to the group. My mom is suffering from cirrhosis

and we are just looking for a place to find more information and seek support as

she waits on the transplant list. Moms cirrhosis is a form called NASH nor non

alcoholic stethohepitits.

She is number one in the region for her blood type now, and we've been that way

for 24 days. It's hard to watch her go through this, and be powerless to stop

it. Whenever our phone rings we all jump hoping it's the call from the hospital,

but it's always just more friends or family calling to check on her. Sometimes I

wish they'd stop calling because I don't want to hear the phone ring unless it's

the hospital telling us they have a liver for her. But I know they are just as

worried as we are, and I have to remind myself that they are our support right

now. Does anyone have any tricks to help them handle the stress of it all while

we wait?

Thanks

Dana

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

Ready for the edge of your seat? Check out tonight's top picks on Yahoo! TV.

[Guest guest]

Hello Dana:

My name is Becky, I am fairly new here myself. Although I don't really post

a lot I do sit back in read the emails taking in what they talk about. I am

in the same situation as you except it's my dad and he has NASH too. It is

caused from his diabetes and from being over-weight for some many years. He

is currently in the nursing home. It's a long story and I can email you

privately (everyone here has pretty much heard the story already) but it's

due to problems that came about due to his cirrhosis. Sadly, right now, they

won't even think about putting him on a list because of these other problems

Being he's 61 and not able to be home and live a regular life (for now

anyway) he does not qualify to be on the list. This group has been wonderful

and because of them I have been able to learn a lot and also have been able

to use it to get certain things done that we could not get done to begin

with it. You can email me anytime if you wish.

Becky

becky1974a@...

-- New to the group

Hi,

I wanted to introduce myself to the group. My mom is suffering from

cirrhosis and we are just looking for a place to find more information and

seek support as she waits on the transplant list. Moms cirrhosis is a form

called NASH nor non alcoholic stethohepitits.

She is number one in the region for her blood type now, and we've been

that way for 24 days. It's hard to watch her go through this, and be

powerless to stop it. Whenever our phone rings we all jump hoping it's the

call from the hospital, but it's always just more friends or family calling

to check on her. Sometimes I wish they'd stop calling because I don't want

to hear the phone ring unless it's the hospital telling us they have a liver

for her. But I know they are just as worried as we are, and I have to remind

myself that they are our support right now. Does anyone have any tricks to

help them handle the stress of it all while we wait?

Thanks

Dana

[Guest guest]

You're welcome.:-)

http://billybobswildride.blogspot.com/

New to the group

Hi,

I wanted to introduce myself to the group. My mom is suffering from cirrhosis

and we are just looking for a place to find more information and seek support as

she waits on the transplant list. Moms cirrhosis is a form called NASH nor non

alcoholic stethohepitits.

She is number one in the region for her blood type now, and we've been that way

for 24 days. It's hard to watch her go through this, and be powerless to stop

it. Whenever our phone rings we all jump hoping it's the call from the hospital,

but it's always just more friends or family calling to check on her. Sometimes I

wish they'd stop calling because I don't want to hear the phone ring unless it's

the hospital telling us they have a liver for her. But I know they are just as

worried as we are, and I have to remind myself that they are our support right

now. Does anyone have any tricks to help them handle the stress of it all while

we wait?

Thanks

Dana

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

Ready for the edge of your seat? Check out tonight's top picks on Yahoo! TV.

[Guest guest]

Dana,

Hi and Welcome to the group. There are some great folks here. We mostly just

share our experiences and what knowledge we have gained along the way. MaC and

Abijann are our researchers. They can find info on anything you have questions

about.

The best thing I can tell you is to be sure to take care of YOURSELF!!!!! In

order to be there for your mom, you have to take care of you. Take a walk, a

bubble bath, visit a friend, journal, read, anything you like to do, do it. Be

grateful for all the friends and family calling, some people don't have that. If

someone asks if they can help, tell them yes and give them something to do.

Grocery Shopping, sitting with your mom so you can get some free time, usually

when people offer they really mean it, and it will make them feel good to help

you. You have to realize you cannot do this alone.

I hope this helps you, if you have any questions, please feel free to ask.

God Bless,

Tricia

Although the world is filled with suffering, it is also filled with overcoming

it. (Helen Keller)

Dana Kinney wrote:

Hi,

I wanted to introduce myself to the group. My mom is suffering from cirrhosis

and we are just looking for a place to find more information and seek support as

she waits on the transplant list. Moms cirrhosis is a form called NASH nor non

alcoholic stethohepitits.

She is number one in the region for her blood type now, and we've been that way

for 24 days. It's hard to watch her go through this, and be powerless to stop

it. Whenever our phone rings we all jump hoping it's the call from the hospital,

but it's always just more friends or family calling to check on her. Sometimes I

wish they'd stop calling because I don't want to hear the phone ring unless it's

the hospital telling us they have a liver for her. But I know they are just as

worried as we are, and I have to remind myself that they are our support right

now. Does anyone have any tricks to help them handle the stress of it all while

we wait?

Thanks

Dana

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

Ready for the edge of your seat? Check out tonight's top picks on Yahoo! TV.

[Guest guest]

,

Hi and Welcome, I discussed partial liver donation with my team but the

hospital I go to doesn't offer that yet. That program will start sometime next

year. Also, I have cirrhosis from Hepatitis C and was told they prefer not to do

a partial. The hep C will eventually attack the new liver and my best chance is

a full transplant.

Feel free to ask any other questions. The people in this group are the

greatest.

God Bless,

Tricia

Although the world is filled with suffering, it is also filled with overcoming

it. (Helen Keller)

s hartman wrote:

Hi,

I am also new to the group. My dad was recently diagnosed cirrhosis. He has

Alpha 1. Our GI and Interist have decided to refer him to Methodist hospital in

Dallas for a transplant evaulation. We hope to get in quickly. Has anyone is

group ever discuss the partial liver donation with their transplant team? Just

wondering . . . what we can expect when we bring up that question.

I am gaining all kinds of knowledge from this group and appreciate everyone's

honesty in dealing with this horrible issue.

Thank you!

Dana Kinney wrote:

Hi,

I wanted to introduce myself to the group. My mom is suffering from cirrhosis

and we are just looking for a place to find more information and seek support as

she waits on the transplant list. Moms cirrhosis is a form called NASH nor non

alcoholic stethohepitits.

She is number one in the region for her blood type now, and we've been that way

for 24 days. It's hard to watch her go through this, and be powerless to stop

it. Whenever our phone rings we all jump hoping it's the call from the hospital,

but it's always just more friends or family calling to check on her. Sometimes I

wish they'd stop calling because I don't want to hear the phone ring unless it's

the hospital telling us they have a liver for her. But I know they are just as

worried as we are, and I have to remind myself that they are our support right

now. Does anyone have any tricks to help them handle the stress of it all while

we wait?

Thanks

Dana

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

Ready for the edge of your seat? Check out tonight's top picks on Yahoo! TV.

[Guest guest]

I'm sorry, but I dont have any idea how much a biopsy costs, but I can bet you

it is cheaper than a CT scan, or an MRI, both of which are very important, but

might not catch cirrhosis., The biopsy is done with a long needle, and usually

doesnt involve a stay in the hospital, just sitting with a compress over the

injection site for a few hour, and they see how the patient is doing, and send

em home. I hope you can scrape up the money from somewhere.

New to the group

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> Hello,

>

> I'm new to all of this and kinda scared. My husband has been a

heavy

>

> beer drinker for about 20 years. And was also told he had Hep B 15

>

> years ago. Right before we were married he seen a doctor at that

>

> time and was given med. Back them we were young and did'nt know

much

>

> about it. Thought the doctor's treated it. Over the years as with

>

> most men he never went to the doctor's only once for kidney stones.

>

>

>

> Now 15 years later, not really knowing where it started or when.

His

>

> always been a big man so we didn't notice his bellying getting

>

> bigger.

>

> but about 6 weeks ago his feet and legs started swelling. So he

stop

>

> drinking and we waited....swelling still didn't go down. Finally

we

>

> located a doctor that would see him without us having insurance.

>

>

>

> The doctor ran some blood test that showed that he was malnution

and

>

> Hep B positive. (still) so that means he had Chonic Hep B and we

>

> didn't know. Liver test come back low....we don't know what to ask

>

> about when it come to the blood test being done.

>

>

>

> The doctor started him on multi vit.-folic acid-B1 thiemin-

protien

>

> drinks and water pill with potassem for a week and still the water

>

> retention was not coming down. Then he put him on an additional

>

> water pill. This one is working and he has lost about 20 pound in

3

>

> weeks. His feet and leg are better but still a little sore.

>

>

>

> The doctor says we may have dodge a bullet this time.

>

>

>

> But still wants to do futher test such as CT, Biopsy,MRI we can't

>

> afford to have these test done and don't have insurance.

>

>

>

> If my husband stays away from the beer and takes care of himself.

>

>

>

> Will he keep getting better? Could this all be just a warning?

>

>

>

> Thank you for your help.

>

>

>

>

>

>

>

>

>

>

>

>

>

>

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____________ _________ _________ _________ _________ _________ _

____________ ___

> Be a better friend, newshound, and

> know-it-all with Yahoo! Mobile. Try it now.

http://mobile. yahoo.com/ ;_ylt=Ahu06i62sR 8HDtDypao8Wcj9tA cJ

>

>

>

[Guest guest]

Hi Colleen,

The doctor tested him for all Hep viruses and only the Hep B showed

positive...I'm thankful for that.. If you got Hep B in 1969 when did

you start having problem and were you ever a drinker?

> Hello,

> I'm new to all of this and kinda scared. My husband has been a

heavy

> beer drinker for about 20 years. And was also told he had Hep B 15

> years ago. Right before we were married he seen a doctor at that

> time and was given med. Back them we were young and did'nt know

much

> about it. Thought the doctor's treated it. Over the years as with

> most men he never went to the doctor's only once for kidney stones.

>

> Now 15 years later, not really knowing where it started or when.

His

> always been a big man so we didn't notice his bellying getting

> bigger.

> but about 6 weeks ago his feet and legs started swelling. So he

stop

> drinking and we waited....swelling still didn't go down. Finally

we

> located a doctor that would see him without us having insurance.

>

> The doctor ran some blood test that showed that he was malnution

and

> Hep B positive. (still) so that means he had Chonic Hep B and we

> didn't know. Liver test come back low....we don't know what to ask

> about when it come to the blood test being done.

>

> The doctor started him on multi vit.-folic acid-B1 thiemin-

protien

> drinks and water pill with potassem for a week and still the water

> retention was not coming down. Then he put him on an additional

> water pill. This one is working and he has lost about 20 pound in

3

> weeks. His feet and leg are better but still a little sore.

>

> The doctor says we may have dodge a bullet this time.

>

> But still wants to do futher test such as CT, Biopsy,MRI we can't

> afford to have these test done and don't have insurance.

>

> If my husband stays away from the beer and takes care of himself.

>

> Will he keep getting better? Could this all be just a warning?

>

> Thank you for your help.

>

>

>

> Group Email: livercirrhosissupport

> web address:

> http://groups.yahoo.com/group/livercirrhosissupport/

>

>

[Guest guest]

Thank you Bobbie for your time...I hope your doing well today

>

> >

>

> > HI, Lena. I'm Bobby, a recovering alcoholic currently waiting to

>

> be placed on the liver transplant list. I read your post, and my

>

> ears perked up. There are many similarities to my story. I did not

>

> have a history of HEP B but I did drink a lot of beer in my youth,

>

> and entire adult life. It was a staple food for me as it is with

>

> many in Europe. I started having a dull pain in June 06 that

>

> progressed into a severe dibilitaing chronic pain, that I am on

>

> strong pain killers for. I want to make one point. I had a CT scan

>

> done, and it came back normal. I have had an MRI done as well,

also

>

> normal. I don't, or try not to give medical advice, but I will

tell

>

> you what I would do if I could do it over...

>

> > I would request a NEEDLE BIOPSY. This is the most reliable test

>

> for Cirrhosis, or what is known as end stage liver disease. I

don't

>

> know if edema is common in other forms of liver disease, but I do

>

> know that Ardis, my best friend had severe edema but from her

liver

>

> disease decompensating. Now, that part about drinking... I was

told

>

> that if I quit and stayed sober, abstained from ALL alcohol, there

>

> was a very good chance that I would not need a liver transplant.

The

>

> biggest improvements are usuallty seen in the first year. After

>

> that , the hepatologist told us that he expected no further

>

> improvement, because my liver function tests are normal, but I

have

>

> some other rather insidious complications, and may still require a

>

> transplant.I have been sober since Sept 15 2006. A year and 4

months.

>

> > The bottom line is this, to drink means certain death from

>

> alcoholic cirrhosis. My previous post contains an link to a story

>

> about that subject. Welcome to our group, and good luck to you,

and

>

> our prayers go out to you and your dear husband.

>

> >

>

> > New to the group

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> > Hello,

>

> >

>

> > I'm new to all of this and kinda scared. My husband has been a

>

> heavy

>

> >

>

> > beer drinker for about 20 years. And was also told he had Hep B

15

>

> >

>

> > years ago. Right before we were married he seen a doctor at that

>

> >

>

> > time and was given med. Back them we were young and did'nt know

>

> much

>

> >

>

> > about it. Thought the doctor's treated it. Over the years as

with

>

> >

>

> > most men he never went to the doctor's only once for kidney

stones.

>

> >

>

> >

>

> >

>

> > Now 15 years later, not really knowing where it started or when.

>

> His

>

> >

>

> > always been a big man so we didn't notice his bellying getting

>

> >

>

> > bigger.

>

> >

>

> > but about 6 weeks ago his feet and legs started swelling. So he

>

> stop

>

> >

>

> > drinking and we waited....swelling still didn't go down. Finally

>

> we

>

> >

>

> > located a doctor that would see him without us having insurance.

>

> >

>

> >

>

> >

>

> > The doctor ran some blood test that showed that he was malnution

>

> and

>

> >

>

> > Hep B positive. (still) so that means he had Chonic Hep B and we

>

> >

>

> > didn't know. Liver test come back low....we don't know what to

ask

>

> >

>

> > about when it come to the blood test being done.

>

> >

>

> >

>

> >

>

> > The doctor started him on multi vit.-folic acid-B1 thiemin-

>

> protien

>

> >

>

> > drinks and water pill with potassem for a week and still the

water

>

> >

>

> > retention was not coming down. Then he put him on an additional

>

> >

>

> > water pill. This one is working and he has lost about 20 pound

in

>

> 3

>

> >

>

> > weeks. His feet and leg are better but still a little sore.

>

> >

>

> >

>

> >

>

> > The doctor says we may have dodge a bullet this time.

>

> >

>

> >

>

> >

>

> > But still wants to do futher test such as CT, Biopsy,MRI we

can't

>

> >

>

> > afford to have these test done and don't have insurance.

>

> >

>

> >

>

> >

>

> > If my husband stays away from the beer and takes care of himself.

>

> >

>

> >

>

> >

>

> > Will he keep getting better? Could this all be just a warning?

>

> >

>

> >

>

> >

>

> > Thank you for your help.

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

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> >

>

> >

>

> ____________ _________ _________ _________ _________ _________ _

>

> ____________ ___

>

> > Be a better friend, newshound, and

>

> > know-it-all with Yahoo! Mobile. Try it now.

>

> http://mobile. yahoo.com/ ;_ylt=Ahu06i62sR 8HDtDypao8Wcj9tA cJ

>

> >

>

> >

>

> >

[Guest guest]

Hi, Dawn. How ironic it is dawn right now here in Denver Colorado. I am Bobby,

one of the moderators here. I have a diagnosis of end stage liver disease after

drinking like a fish for 25 years. I am sober one and half years now. Trying to

get listed for a transplant. Every time I read a story like yours , my ears

prick up, because it doesnt ring a bell, it strickes a chord, a loud one. I went

to my doctor in late summer 06 after qutting cold turkey and asking for as full

workup, because I was positive I had caught up to my best friend who was dying

of end stage liver disease.

this is a story from my blog:

http://billybobswildride.blogspot.com/2007/09/summer-of-2006-catching-up.html

She sent me for an ultrasound, and I even had a second one before I agreed that

the pain I was having was only my gallbladder acting up, and let them talk me

into having the thing yanked. I asked the surgeon to take a biopsy when he was

in there, and he agreed. This was against my PCP doctor's wishes. I awoke to the

news that I did in fact have a pretty significant macro nodular liver, full

blown cirrhosis, but he said dont worry, you dont have any portal hypertension.

He was wrong. I do have portal hypertension. I also have encephalopathy, and

hepatopulmonary syndrome.

I feel very sick and I am taking strong narcotics just to function. I am in

terrible pain on a daily basis. I am heart broken over this turn of events.

Now, on to you. My dear, I cannot blame you for being upset.

It feels awful to be minimized and then watch their faces when they explain the

bad news. You joined the best support group there is. Our numbers grow two by

two on a daily basis. Let me apologize for not getting you approved sooner, but

I was having a ct scan. I will write a post for you now. Love, Bobby, Moderator,

Yahoo LCS Group.

New to the group

Hello,

I am new to the group. I was diagnosed with NASH 3 years ago, based

on elevated liver enzymes and ultrasound results. While I've been

worried and have expressed that worry to my doctors, I feel like

I've been " dismissed " for 3 years with " It's fatty liver. Go home,

lose a few pounds and stop worrying " . Now, suddenly, in my latest

lab work and my latest ultrasound, I'm hearing things like " possible

early cirrhosis " . WHAT??? I was never told it could progress to

this. I was always treated like a pest for worrying about my liver.

I'm on my way to Mayo Clinic for a more thorough evaluation on

Monday, but the research I've done on my own is so discouraging, I'm

terribly, terribly frightened. I'm a 54 yr old female, about 10 lbs

overweight, with a very strong family history of diabetes. I'm

currently pre-diabetic with fasting glucose levels in the 115-120

range. It sounds like, based on what I've read, that there is

nothing that I can do about this. I'm on Lipitor, Tricor,

Metformin, Atenelol - all the meds that are recommended for NASH.

I'm working on getting the extra 10 lbs off but I'm not even close

to being obese. Still, I seem to be headed towards Cirrhosis, and

in my current state of mind, it feels like I could be headed for

liver failure, liver cancer, or even death. Transplant may

eventually be an option, but how many people who need a transplant

actually get one?

I'm sorry to go into such detail. I'm very scared and am not

planning to even tell my family until I have something more

definitive to tell them. I went looking for a support group and

found this one. Hopefully my story will ring a bell with someone

and can maybe share some insight and support?

Thanks in advance,

Dawn

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know-it-all with Yahoo! Mobile. Try it now.

http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

Dawn,

I'm really sorry you had to find us...but thrilled you found us!! This is a

great place for encouragement and information! Bobby & MaC are incredible!

I was caretaker for my mom in her last 6 months of life. She has diagnosed with

a fatty liver 30 yrs ago, she had slightly elevated liver enzymes. I remember

her taking tylenol a LOT over those years and not changing her diet at all. 20

yrs later she had a biopsy and mild cirrhosis was discovered, not a word said

by the doctors about her diet or medicine consumption. In the last 5 yrs mom

developed Rheumatoid Arthritis and the medicines were damaging to her

liver/kidney, and now she is gone. Mom never drank.

I wouldn't worry, but I would arm yourself with knowledge. Prepare your

questions before your appointments. Keep records of all appointments and lab

work. I charted mom's on the computer so I could see each change.

Welcome and I'll be praying for you!

Pamela

[Guest guest]

Welcome #2 LOL As for the nasal polyps my allergist and ENT both prescribed Nasonex and it helps If you need anything let me know, I'm Terry W btw and I'm from MD

From: asthma [mailto:asthma ] On Behalf Of Sent: Monday, March 02, 2009 7:36 PMTo: asthma Subject: New to the group

My name is and I just joined this group. I haven't had a chanceto read through all of the many posts, but its wonderful knowing thereare other people with the same issues I have. I have moderate asthmaand allergies to just about everything. I work in a very large roomwith a 20 women, three of whom douse themselves with perfume often. I have an air purifier at work - an Austin Air Healthmate Plus Jr.,which I bought specifically to filter out the fumes of perfume andpermanent markers used in the area. "Pure air in 7 seconds" is how itwas advertised.Among many reviews I read, this was an objective review of the airpurifiers available: http://www.consumersearch.com/air-purifiers/reviewI use advair for asthma, and nasarel for allergies, though I just gotdone taking mega doses of prednisone because I now have nasal polyps,which will have to be surgically removed (not looking forward to that).My ENT just gave me 2 samples of Advair, because he said there is nowa new product out that is competing with Advair. Has anyone heardanything about it? He didn't tell me the name of the product.To answer other posts, I'm from Pennsylvania and there is no smokingallowed in restaurants (of course, the casinos are still allowed tohave smoking areas, as well as bars/taverns but it depends upon thepercentage of food/alcohol they serve.Here in PA, we also have to show our drivers license and sign a formwhen buying Sudafed (I buy the generic WalMart version).Thanks for having me.

[Guest guest]

I'm # 1. Welcome to the group from me, too. I lurk when I get busy with college classes and my granddaughter, but I check in now and then. This is a great group with people who care.

God bless you!

To: asthma Sent: Tuesday, March 3, 2009 12:12:31 PMSubject: RE: New to the group

Welcome #2 LOL As for the nasal polyps my allergist and ENT both prescribed Nasonex and it helps If you need anything let me know, I'm Terry W btw and I'm from MD

From: asthmayahoogroups (DOT) com [mailto:asthma@ yahoogroups. com] On Behalf Of Sent: Monday, March 02, 2009 7:36 PMTo: asthmayahoogroups (DOT) comSubject: New to the group

My name is and I just joined this group. I haven't had a chanceto read through all of the many posts, but its wonderful knowing thereare other people with the same issues I have. I have moderate asthmaand allergies to just about everything. I work in a very large roomwith a 20 women, three of whom douse themselves with perfume often. I have an air purifier at work - an Austin Air Healthmate Plus Jr.,which I bought specifically to filter out the fumes of perfume andpermanent markers used in the area. "Pure air in 7 seconds" is how itwas advertised.Among many reviews I read, this was an objective review of the airpurifiers available: http://www.consumer search.com/ air-purifiers/ reviewI use advair for asthma, and nasarel for allergies, though I just gotdone taking mega doses of prednisone because

I now have nasal polyps,which will have to be surgically removed (not looking forward to that).My ENT just gave me 2 samples of Advair, because he said there is nowa new product out that is competing with Advair. Has anyone heardanything about it? He didn't tell me the name of the product.To answer other posts, I'm from Pennsylvania and there is no smokingallowed in restaurants (of course, the casinos are still allowed tohave smoking areas, as well as bars/taverns but it depends upon thepercentage of food/alcohol they serve.Here in PA, we also have to show our drivers license and sign a formwhen buying Sudafed (I buy the generic WalMart version).Thanks for having me.

[Guest guest]

Take a look at the Files and Links section of the list

website. There is a great deal of information there that

will answer many of your questions.

I buy DMSO from farm supplies, either on line or brick and

mortar. Health food stores also carry it but it is about

twice as much, often in a nice amber glass bottle though.

Just don't use it full strength topically. Learn the

dilutions for various skin areas, not more than 70% and on

sensitive skin not more than 30%, eyes, nose, mucous

membranes not more than 5%.

It can be taken orally on a daily basis for health, some

suggest not more than 1/4 t others take a full teaspoon, on

an empty stomach only, maybe in some juice, but no food in

the stomach or you will get nausea. It's also nice to add to

a bath.

Odor control from the dimethyl sulfide metabolite is

necessary -- liquid chlorophyll or tablets helps, other wise

you may smell like strong garlic if you use DMSO frequently

or take it orally.

Garnet

Dobbins wrote:

>

>

>

> DO not know anything at all about this? where does one buy it? How much

> will it cost?

>

> I have diabetes. and a couple of other health issues...Learning or

> trying to learn herbal medicine, because it is free..

>

> I am out of a job, no money for prescriptions, doctors or anything.

> SO herbal experimentation is the only thing within my reach....

>

> Here I am.. I have nothing...I know nothing.

>

>

> western NC

>

>

[Guest guest]

>> > Just don't use it full strength topically. Learn the > dilutions for various skin areas, not more than 70% and on > sensitive skin not more than 30%, eyes, nose, mucous > membranes not more than 5%.

Hi Garnet,

I just got some DMSO shipped to me from http://www.petsupplies4less.com/DMSO-Liquid-16-oz--pr--019DMSO16 and it just says 99% purity. What I've bought in the past always said it was diluted 70% or less. This is the first I've ordered from this place. I got the link from the files section for this group. So would you say this is not diluted? Sorry to sound daft but well...I'm sorta new at this.

What's the best way to dilute? Distilled, filtered water? I usually apply it topically along with magnesium oil.

Thanks!

in Albuquerque

PS. What's the half life of DMSO??? Just kidding!

[Guest guest]

Yes you need to dilute it to use it on your skin. 99% can be

treated as 100% for the sake of simplicity in making

dilutions. Use only distilled water since it is pure, not

all filtered water is pure.

What ever the percentage you want to make the total parts

should add up to ten. For example 70% solution is 7 parts

DMSO and 3 parts water. 5% would be 1/2 part DMSO 9 1/2

parts distilled water. Although many people use 70% on some

body parts it does not always take a concentrated solution

to achieve good results. I have used 20% on injuries with

good results. Start low and work up until you know if you

are sensitive or if you are treating sensitive areas where

the skin is thin, face, neck, chest, back of knees, inside arms.

The " part " measure can be any unit of measure, even

something that is not a normal measuring device like say a

baby food jar or a juice glass. You will end up with ten

times the amount of the measuring device so what you use

depends on how much you want to mix up at one time.

Always add the DMSO to the water since there is a heat

release when the two mix and this will slow it down.

Garnet

sarahlight22 wrote:

>

>

>

>

>

> >

> >

> > Just don't use it full strength topically. Learn the

> > dilutions for various skin areas, not more than 70% and on

> > sensitive skin not more than 30%, eyes, nose, mucous

> > membranes not more than 5%.

>

> Hi Garnet,

>

> I just got some DMSO shipped to me from

> http://www.petsupplies4less.com/DMSO-Liquid-16-oz--pr--019DMSO16

> <http://www.petsupplies4less.com/DMSO-Liquid-16-oz--pr--019DMSO16> and

> it just says 99% purity. What I've bought in the past always said it was

> diluted 70% or less. This is the first I've ordered from this place. I

> got the link from the files section for this group. So would you say

> this is not diluted? Sorry to sound daft but well...I'm sorta new at this.

>

> What's the best way to dilute? Distilled, filtered water? I usually

> apply it topically along with magnesium oil.

>

> Thanks!

>

> in Albuquerque

>

> PS. What's the half life of DMSO??? Just kidding!

>

>

[Guest guest]

Thanks!

> > >

> > >

> > > Just don't use it full strength topically. Learn the

> > > dilutions for various skin areas, not more than 70% and on

> > > sensitive skin not more than 30%, eyes, nose, mucous

> > > membranes not more than 5%.

> >

> > Hi Garnet,

> >

> > I just got some DMSO shipped to me from

> > http://www.petsupplies4less.com/DMSO-Liquid-16-oz--pr--019DMSO16

> > <http://www.petsupplies4less.com/DMSO-Liquid-16-oz--pr--019DMSO16>

and

> > it just says 99% purity. What I've bought in the past always said it

was

> > diluted 70% or less. This is the first I've ordered from this place.

I

> > got the link from the files section for this group. So would you say

> > this is not diluted? Sorry to sound daft but well...I'm sorta new at

this.

> >

> > What's the best way to dilute? Distilled, filtered water? I usually

> > apply it topically along with magnesium oil.

> >

> > Thanks!

> >

> > in Albuquerque

> >

> > PS. What's the half life of DMSO??? Just kidding!

> >

> >

>

[Guest guest]

Hi, I am new to the group and am on here for my sister who has had CFIDS for

about 22 years (since age 16). She has been unble to work for about the last 6

years. She also has fibromyalgia and a host of other diagnoses. Recently she was

talking to someone at her insurance company about circadian rhythyms, who

suggested she get her circadian rhythyms checked out. Does anyone know how she

would go about doing this? Are there any doctors in the US (or abroad) who have

treated CFIDS patients in this regard? Any websites we can go to? Any help you

can give me would be greatly appreciated. Thank you!