Re: New member

Posted November 28, 2002 · November 28, 2002

Francoise,

It is wonderful you have decided to join our group. Indeed, we are not

sad people. For the most part our children with mds are doing

beautifully. But here we can also share when we encounter difficulties

or concerns. Usually there are others who have been there already to

offer words of wisdom and encouragement. I look forward to getting to

know your family better.

You may want to post your pictures through the yahoogroups mosaic

homepage or send them to a to post on the Photoisland (she'll

send you the details on that :-).) We cannot open attachments in the

group email because we had a problem with virus' being passed around and

the moderators had to stop attachments. Can't wait to see your beautiful

though. I love pictures.

Hope (mom to 15, 12 and 11 months/mds)

Posted October 17, 2007 · October 17, 2007

- sounds like our politics are opposites, but otherwise we agree,

doing what we can while we can. Monday I have a Women's Bible Study,

studying the life of 52 women in the Bible. Tuesday I quilt at church in the

mornings, make lap robes for sick people lol especially veterans and hospice

patients, Tuesday night I go to Bible study, Wednesday is either recovery

day or laundry day whichever it feels like after a busy Tuesday, Since the

temps have gone down here, the amount of laundry has decreased too.

Thursday I volunteer at our local museum doing their computer work, sending

emails, creating flyers and brochures, etc, Tomorrow I have a dr. appt with

the dermatologist, threatening skin cancer as if I needed that, Friday is

usually open right now, sometimes I tutor people who are trying to learn to

read in their old age on Mondays and Fridays, not doing so right

now. Saturday I go to Weight Watchers, credit them with helping to keep me

alive, learning how to eat right, then get groceries and other shopping. I

spend the weekend talking to friends and family, thank heaven for cell

phones so it doesn't cost anything. It is really important to keep in touch

with them all. Sunday is church and then adult Bible Study. I don't know

how much longer I will be able to keep up all these things, but as long as

the house can be a mess, I am not going to worry about it. When I get sick

enough I will probably qualify for someone to come in and help with that

sort of stuff, but right now I need the human contact and the fellowship of

other people. And I have started recycling cans and plastic bags. The

museum and the school here recycle them to get money for special things.

Not sure what you mean by gaslighters. But I do know some people who think

I should put my energy into cleaning house, keeping up with dishes etc

instead of doing the things out of the house. Yes, I am ready, but hopeful

it won't be too soon. I have lots of experiences with my grandchildren and

children yet that I want to enjoy. I had my second grandson living with me

for 3 months until he got in trouble here. He got in trouble at home which

is why he came here. Even with the trouble he got into, I really miss his

company. He even clipped my hair one night. BTW I wear a wig as either the

conditions or the medications for them have made mine very thin and no

body. It is so much easier to be able to go out when all I have to do is

put on my wigs like I put on my clothes. I recommend it to anyone who has a

lack of energy and would have to spend a lot of time on their hair to make

it look halfway decent. And they are very reasonably priced now too. Jan H

>

> Yeah, Jan. I look in the mirror and wonder who that LOL is? There's a very

> young person inside, one with lots to do and make and see. I call myself

> " ready " 'cause I've had a good life, but not ready just yet to not be in

> charge.

>

> Do you have " gaslighters " in your circle? I hope not, 'cause I do. Some of

> my ideas (recycling, organic gardening, permaculture, reducing " footprint

> on

> the earth, " and political interests seem just too far out and they say I'm

> " crazy, " and waste too much time at " that crap. " But these are interests

> I've always had but just now can give my attention and actions. Here's an

> example: I have less than a grocery bag of garbage for about 6 months

> because I have a compost pit and an organic shredder that helps me build

> my

> soil. I'm not a " mall-crawler, " don't have a TV, don't need to be

> " entertained, " and I enjoy life more than anybody I know!

>

> Being one of those " bleeding heart liberals " doesn't help here in Alabama,

> either! That's their expression, not mine!

>

> I was never what you'd call " beautiful, " so didn't have to mourn over

> losing

> that. I say the Good Lord needs little red hens as much as He needs

> butterflies. I suffer fools gladly, much too much for my own good, and

> sometimes that takes up too much of my time. Right now the big physical

> drag

> is my granddaughter who lives with me and thinks working means no other

> chores. Doesn't pick up after herself, wipe spills, etc. I've got to get

> tough about that.

>

> " I cannot and will not cut my conscience to fit this year's fashions. " -

> Lillian Hellman

>

> - - - - -

>

> Re: new member

>

> Posted by: " Jan Holman " janholman@... arizonablackhat

>

> Date: Wed Oct 17, 2007 4:16 pm ((PDT))

>

> Bob - I didn't say I would give up, just that I want to get as old as I

> can

>

> before it does me in. And that getting older isn't going to make my

>

> unhappy. Don't mind it at all any more. Just constantly amazed that the

>

> calendar says I am 64 when my mind, the part that isn't in a fog, would

>

> still like to go out and play volleyball in my heels

>

> Jan H

>

> No virus found in this outgoing message.

> Checked by AVG Free Edition.

> Version: 7.5.488 / Virus Database: 269.14.13/1075 - Release Date:

> 10/17/2007

> 9:38 AM

>

Posted March 15, 2008 · March 15, 2008

Hi Mom of three,

I just lost my mom to Cirrhosis 2 weeks ago. Dad and I took care of her the

last 6 months of her life. If you have any questions I'd be happy to help if I

can.

Everyone goes through things differently. My mom didn't have varacies and only

had one episode of encephalopathy and we got her on lactulose. She was able to

move until the last month and then she was bedridden. That was difficult. Mom

wasn't in much pain until the last few weeks and then slept so much and

communicated so little that we think she was pretty comfortable with the dose of

morphine we were giving her. When she stopped taking food I was pretty

distressed but the hospice nurse reassured me that this was normal and not to

worry. Then she stopped drinking and it was just a few days before she passed.

Do you have hospice coming? They can be so very helpful.

Do you have specific questions.?

Big hugs sweetie, this is hard!

Pamela

New member

Hi i am a new member. My mom is in the final stage of cirrhosis. She

maybe has 6 months. She was denied a liver transplant last month due

to her other illness along with her cirrhosis. I am really glad to

find this group. I have had family members pass away but watching my

mother is heart breaking. I feel really bad for my dad. He takes

care of her day in and day out. If anyone has any info on what we can

expect that would be great. Thanks

Posted March 17, 2008 · March 17, 2008

Hi, I am a new member.....45 Year old male. 3 years ago started throwing up

blood on a Sunday night. Had wife take me to the ER.....almost died that night,

they told me I had end Stage Cirrhosis of the liver. They banded the bleeding

and out of the hospital in 1 week, in 2 days started bleeding again this time I

had my last rites, the doctors told my wife they didn't think I would make it

throught the night....next day had a TIPS surgery. Stayed in hospital another

week. Never drank after the first visit to the hospital (had no problems with

stopping). I have blood work done every three months. Went to Hopkins for

a liver evaluation. 10/07 I was placed on the liver transplant list (With a

MELD score of 12)....Since October my MELD score is 9.......I'm doing something

right!!! Have several problems, wondering if anyone can help with these

problems...... Itching on the legs, I have itching so bad that they bleed....Dr

says not from the Cirrhosis, went to Derm. he

doesn't know the cause, gave me some cream with 2.5% cortizone, but that

doesn't seem to help....

2nd question.....every couple of months my legs start to burn and a rash

appears, then I get a fever of 101.5+ and have to sleep for the rest of the day.

Wake up the next day and everything is back to normal....I know exactly how long

till the fever hits and how long I have to sleep.....anyone else ever experience

this.

3rd question.....weight gain and I don't eat that much......Dont have acities

as the ultrasound I had last week didn't see any.....I am very tired most of the

time.....

Why am I having more problems now, with my MELD score at its lowest.

I do have a great support system from my family and friends...couldn't ask for

a better team.

Thanks for your help

Jeff

jeffwas123@...

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

Never miss a thing. Make Yahoo your homepage.

Posted March 17, 2008 · March 17, 2008

I had a horrifying itch to. It was behind my left knee. I never could get it to

go away. If it itched I could not resist the temptation to dig the fire out of

it. I would dig it even with car keys. It was localized to the back of my knee.

I finally took Gold Bond to it. Within a few days it was clearded up. Then I

scratched it again and the whole process started over. I have no idea if it's

cirrhosis related or not. I have not had it checked by a Derm. Eucerin has

helped a little but it's short acting and messy. Always check with you Dr.

before using anything. What works for me may not be good for you?

Welcome and hi. I just got back from another varice banding procedure myself,

just a couple of hours ago. This time wasn't bad at all (knock on wood).

For some of your other questions, you have a great group of people here so

willing to help if they can.

Good Health.

jeff wasko wrote:

Hi, I am a new member.....45 Year old male. 3 years ago started throwing up

blood on a Sunday night. Had wife take me to the ER.....almost died that night,

they told me I had end Stage Cirrhosis of the liver. They banded the bleeding

and out of the hospital in 1 week, in 2 days started bleeding again this time I

had my last rites, the doctors told my wife they didn't think I would make it

throught the night....next day had a TIPS surgery. Stayed in hospital another

week. Never drank after the first visit to the hospital (had no problems with

stopping). I have blood work done every three months. Went to Hopkins for a

liver evaluation. 10/07 I was placed on the liver transplant list (With a MELD

score of 12)....Since October my MELD score is 9.......I'm doing something

right!!! Have several problems, wondering if anyone can help with these

problems...... Itching on the legs, I have itching so bad that they bleed....Dr

says not from the Cirrhosis, went to Derm. he

doesn't know the cause, gave me some cream with 2.5% cortizone, but that doesn't

seem to help....

2nd question.....every couple of months my legs start to burn and a rash

appears, then I get a fever of 101.5+ and have to sleep for the rest of the day.

Wake up the next day and everything is back to normal....I know exactly how long

till the fever hits and how long I have to sleep.....anyone else ever experience

this.

3rd question.....weight gain and I don't eat that much......Dont have acities as

the ultrasound I had last week didn't see any.....I am very tired most of the

time.....

Why am I having more problems now, with my MELD score at its lowest.

I do have a great support system from my family and friends...couldn't ask for a

better team.

Thanks for your help

Jeff

jeffwas123@...

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

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Posted March 17, 2008 · March 17, 2008

My mom had itching and she took EFA's (Essental Fatty Acids) we used the NSI

brand 500 mgs 1x a day and her itching went away. I know that liver disease can

cause itching. Not sure what is causing yours.

If your liver isn't making albumin it is difficult to get enough protein to keep

your nutrition levels up. One doc. told my mom to drink whey protein drinks.

Hope you find the answers you are looking for.

Pamela

Re: New Member