This and That

[Guest guest]

Thank You everyone for your all of your prayers.

Jj I also have PBC. I have been dealing with PBC for eleven years. And like you said you will get used to it. When I started taking it I was doing a little dance after I got it down, lmao. I almost had my husband convinced that I could go to the doctor and get home just fine and then when they called yesterday to tell me my ammonia was back up to 161 he is not going to allow me out of the house again with out with him lol.

I cried when I came out of my fog because becaue of not realizing how i was working just on auto pilot. When you realize you was on auto pilot you start wondering what part of your life you missed and how was you able to do all of this.

Here is one bit of information that I have not given to everyone. You can go into a coma.

The difference between diabetic and an ammonia coma is this. When a diabetic goes into a coma they may can come out of it with bllindness or whatever. ( I am not sure what can happen with a diabetic). If you go into a ammonia coma it is very hard to come out of it. And death could happen. ( I am saying ammonia because the other word for this is too hard to spell LOL).

One good way to check is. 1. if you are talking to someone and you forget what you are talking about. 2. If you forget why you called someone.

I know everyone forgets but those of us who have liver disease it is alot more, you forget your phone number and address and everything else you do every day.

If you get up to do something and you get up to do it but just as soon as you get up to go do it and all of a sudden you are just standing there wondering what you got up to do. If you forget something thre minutes after you talked about it then you need to go to your doctor and have him do blood work. If you get weird looks while you are talking to someone that means you are not making sense. And you are talking to someone one and you can hear that you are repeating yourself then you know something is wrong, If you are sleeping alot and not staying awake longer than three minutes you know something is wrong.

I have been telling my doctor that something is wrong but he was blowing me off since i can't seem to tell him why then it is all in my head.

I hope that i am explaining all of this right. My suggestion to you Shirl is to start taking notes so that you don't miss a thing.

The only symptoms that I have seen in me is. 1. Forgetting everything from conversation, 2. sleeping all of the time. 3. Talking about something like the news and forgetting the point of a conversation. Here is how to control it just a little. 1. Take lactulose. 2. Cut down on the protein. (they have me on 5 ounces a day on protein). Ask your doctor to do a blood test to check your ammonia levels.

I hope that I have given out enough information.

Kay Lynn

kloyed@... Hi. I also had bad encephalophy before my transplant. I remember well the yucky sweet stuff you have to drink. (Lactulsoe) You actually get used to it! I drank a LOT of that stuff. When I was near the end stage, before my transplant, it no longer did anything. I have PBC not AIH. They are different but is still liver diease and get same symptons.

Cirrhosis.... cirhossis is inflamtation of the

liver. People who never get beyond early stages do not get their liver inflamed in this way. But, liver disease CAN and often does turn to cirhosis. This is from the PBCers.ORG

site>>>>> http://www.pbcers.org/liverfunc.htm

With the onset of liver disease, the cells of the liver, called hepatocytes are injured or die. If the injury is mild and reversible, the cells may regenerate and the patient may be left with an entirely normal liver. This remarkable capacity of the liver to regenerate is a unique feature of the organ. When the injury is more severe or sustained, regeneration may be incomplete or healing may occur with the development of fibrosis or scars, which can cause cirrhosis.

Physicians ordinarily make a diagnosis of cirrhosis using some form of liver biopsy, permitting the identification of marked distortion of the normal architecture of the liver by scar formation and irregular incomplete areas of regeneration. The development of cirrhosis leads to the obstruction of normal blood flow through the liver, resulting in increased pressure in the veins throughout the abdomen. A consequence for patients is the development of enlarged blood vessels or varices, in the lower end of the esophagus that can bleed and result in abnormal function of other organs and even death. When cirrhosis develops, the normal functions of the liver are disrupted, leading to raised ammonia levels that can interfere with the normal function of the brain, producing coma. Decreased albumin levels may contribute to fluid accumulation

SWOLLEN LEGS..... If you have swollen legs I hope your doctor is aware and has you on an diuretic! I started on Aldactone then went to Lasic. I continued on the Lasic after my transplant as I was SO FULL of fluid. I had about 60 pounds of fluid I lost after a couple months after transplant.

BRENDA..Again, I want to say my thoughts are with you and I will include you in my prayers. Joanne

[Guest guest]

Amen to that! It does one good to ask questions or vent to people who understand

where you're coming from & I do value this outlet.

Lida

Jj Cathcart <JJCATHCART@...> wrote:

First.we freely pray for each other here........... is a small close group.

also.whining is VERY acceptable here also.... we all need a safe place to whine

off and on. Joanne

[Guest guest]

In a message dated 9/4/08 9:24:06 AM, eurowestgirl@... writes:

What sort of degree does a professor of herbalogy have? Are you sure that he

is the appropriate person to wean you off Imuran? Will your ALT/AST levels be

monitored through blood tests? What does your hepatologist say about this

process and about the herbs used?

I haven't grown petunias in some time. My memory is that, especially in hot

weather, an individual petunia blossom doesn't last very long at all. However,

new blossoms usually quickly replace the old ones. The old blossoms need to be

dead-headed (broken off at stem-level); otherwise blooming will cease.

Harper

> I saw an acupuncturist in DC and

> have found one in San Diego for treatment--he focuses on my liver, as

> well as vertigo and stress. In addition to being a licensed

> acupuncturist, he's a professor of herbalogy and prescribes herbs

> (orange bitters) in an effort to eventually wean me off Imuran. (And

> he's writing a book on autoimmune disease--how fortuitous!)

>

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[Guest guest]

Hi all,

Lately I've been thinking of you and your gardens! Joanne, it's nice

to hear an update on what you're growing. I moved to San Diego last

month and am enjoying the gorgeous mild weather, which is a complete

180 from where I used to live (DC).

I have a balcony for the first time in several years and can grow

several varieties of flowers. However, I'm not very familiar with what

works and what doesn't work. I planted petunias, zinnia, lavender,

basil, feather, succulents, and trailing annuals (alyssum, labelia,

and trailing lantana).

Of course the succulents (moss rose) have done the best, they are

flowering like crazy. So colorful and cheerful! However, the heather

died within a couple days and the zinnia within a couple week, and the

petunias are no longer flowering. When one petunia flowers, the flower

drops off within a day. I don't understand why. I figure if anyone

knows, it's this group!

Everything else is going pretty well. I saw an acupuncturist in DC and

have found one in San Diego for treatment--he focuses on my liver, as

well as vertigo and stress. In addition to being a licensed

acupuncturist, he's a professor of herbalogy and prescribes herbs

(orange bitters) in an effort to eventually wean me off Imuran. (And

he's writing a book on autoimmune disease--how fortuitous!) In June

while apartment hunting, I had run into a lady with AIH who has been

in remission for 11 years under this acupuncturist's care. Now, the

last time I stopped taking Imuran, it was a mess. This was last

December, and within 2 weeks, my liver enzymes had skyrocketed from

normal to the 800s. Of course, I don't plan on simply stopping the

Imuran like I did last time, but I'm certainly interested in trying

something slow and methodical. We'll see how it all works out!

If you remember, I was working on my final graduate paper and sending

out survey links for a epidemiology paper on autoimmune liver

diseases. Hopefully I'll be able to get back to publishing the results

of that paper soon. In fact, I'm about to register for a couple

conferences next year and am thinking of presenting the results.

Health education is just so important and critical to most of us and

for others who are newly diagnosed.

Enough from here! It's always nice to read the positives that are

going on in our lives!!

Jackie

>

> Tina wrote " My affairs are in order and we take it day by day,

grateful for each we are given. I don't share my story for pity or

make anyone scared or feel bad, I am at peace with this most of the

time, and well.. no one gets out of here alive! I continue lab work

more for what can be learned from me than for myself. " This past

Sunday, after going out to dinner, my husband and I went to the

cemetary and picked out our plot! Now, I feel better knowing where my

and his ashes will be. I don't know why but it is comforting having

done this. I also have made my funeral arrangements. I did that

years ago. Both of my parents had done that and I just feel it is

good to get done so others left behind aren't stuck doing it when they

are sad.......... Others of us in our Post Tx PBCers group have also

doen this......has been one of the topics lately. The other

discussion of merit is our pets.all our cats and dogs and how they

make us happy which in turn helps us to feel better and to heal

easier. Pets really are good for the soul and the body. I have the

two cats and one dog..........I still want to add a fish or two but

can't figure out where to put the little tank. (No more big tanks.too

much work) BTW.....cleaning litter boxs is ok if you wear a mask and

wear rubber gloves.(like the ones for dishwashing) Even better is to

use a low dust one.I use Swheat.is made of wheat and love it. Garden

is doing well now that we finally have lots of sun..........lots of

cukes and squashes....some but not too many tomatoes.lettuce has gone

by.but will plant some inside this winter under grow light. Will

dig up the potatoes next week. I planted the little fingerlings....

I hope they grew nicely. Many blessings to all, Joan.haven't

heard from you for awhile.you all ok? Joanne

> ____________________________________________________________

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>

>

[Guest guest]

You're so sweet, Harper, to ask so many questions! :0) I feel in good

care with this provider and I'll be sure to update more as the

treatment progresses.

I have been pulling off the dead bloom daily. You're right, perhaps

the sun is affecting the blooms. We definitely get a lot of sun here!

I'll be in your neck of the woods later this month. My friends from

France are coming into town Sept 19th and my husband and I are taking

them on a 2-week tour of a few national parks out West. Then we'll

head to San Francisco for a few days of exploration up then down the

California coast. Can't wait! It's such a treasure to live here and

enjoy the spectacular beauty of this state!

Happiness!

Jackie

>

>

> In a message dated 9/4/08 9:24:06 AM, eurowestgirl@... writes:

>

> What sort of degree does a professor of herbalogy have? Are you sure

that he

> is the appropriate person to wean you off Imuran? Will your ALT/AST

levels be

> monitored through blood tests? What does your hepatologist say about

this

> process and about the herbs used?

>

> I haven't grown petunias in some time. My memory is that, especially

in hot

> weather, an individual petunia blossom doesn't last very long at

all. However,

> new blossoms usually quickly replace the old ones. The old blossoms

need to be

> dead-headed (broken off at stem-level); otherwise blooming will cease.

>

> Harper

> > I saw an acupuncturist in DC and

> > have found one in San Diego for treatment--he focuses on my liver, as

> > well as vertigo and stress. In addition to being a licensed

> > acupuncturist, he's a professor of herbalogy and prescribes herbs

> > (orange bitters) in an effort to eventually wean me off Imuran. (And

> > he's writing a book on autoimmune disease--how fortuitous!)

> >

>

>

>

>

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

> It's only a deal if it's where you want to go. Find your travel

> deal here.

>

> (http://information.travel.aol.com/deals?ncid=aoltrv00050000000047)

>

>

>

[Guest guest]

You are amazing! Stay strong!

>

> Tina wrote " My affairs are in order and we take it day by day,

grateful for each we are given. I don't share my story for pity or

make anyone scared or feel bad, I am at peace with this most of the

time, and well.. no one gets out of here alive! I continue lab work

more for what can be learned from me than for myself. " This past

Sunday, after going out to dinner, my husband and I went to the

cemetary and picked out our plot! Now, I feel better knowing where

my and his ashes will be. I don't know why but it is comforting

having done this. I also have made my funeral arrangements. I did

that years ago. Both of my parents had done that and I just feel it

is good to get done so others left behind aren't stuck doing it when

they are sad.......... Others of us in our Post Tx PBCers group have

also doen this......has been one of the topics lately. The other

discussion of merit is our pets.all our cats and dogs and how they

make us happy which in turn helps us to feel better and to heal

easier. Pets really are good for the soul and the body. I have the

two cats and one dog..........I still want to add a fish or two but

can't figure out where to put the little tank. (No more big

tanks.too much work) BTW.....cleaning litter boxs is ok if you wear

a mask and wear rubber gloves.(like the ones for dishwashing) Even

better is to use a low dust one.I use Swheat.is made of wheat and

love it. Garden is doing well now that we finally have lots of

sun..........lots of cukes and squashes....some but not too many

tomatoes.lettuce has gone by.but will plant some inside this winter

under grow light. Will dig up the potatoes next week. I planted

the little fingerlings.... I hope they grew nicely. Many blessings

to all, Joan.haven't heard from you for awhile.you all ok?

Joanne

> ____________________________________________________________

> Internet Security Software - Click here.

>

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>

>

[Guest guest]

Thank you for bringing up some other conversation besides our problems.

We on the West Coast are boiling today also. My grapes which have always

performed beautifully, are drying up , I think the whole vine will die. It is

one stock, that reaches all the way around my huge deck and usually produces

10-15 bushels of grapes. I'll be lucky if it survives.

Everyone, be as well as you possibly can.

Clara from OR

>

> It has been so hot this past week! Most of our summer here in the Northeast

> was rainy and cold. Now it has turned very hot and we now have no rain so I

> actually having to water my gardens............Didn't think I would need to

> do that this year what with it raining every day for the first few months of

> summer...........Then last evening the mosquitos hatched and they are all

> over. Even using the Therma Cell to repel them, they are still buzzing

> around us and we gave in and came in.. I have mentally planned out a new

> flower garden...now I just need the energy to dig it up and start planting

> there. With all the rain we had earlier the berries are not that good this

> year. It's too bad as I love all of them and usually freeze a bunch. Not

> this year. But, the veggys from the garden are finally bearing lots of

> goodies. I hope all are getting a good end of the summer and

> those of you in the other hemi. a good end to winter. We went to the river

> Saturday and took the dogs.......it was a lot of fun. Took a picnic but had

> so much fun we never got around to eating. I

> am still on my diet.but even though am still loosing inches around the tummy

> (yeah!) I haven't lost and more weight for the past three weeks! So.I guess

> I need to eat another meal.......three times a day isn't enough I guess to

> get my metabolism going fast enough. I got this saying froma PBC friend.

> Joanne " When health is absent, wisdom cannot reveal itself,

> art cannot be manifest, strength cannot be exerted,

> wealth becomes useless and reason is powerless. "

> Herophilus, circa 300 B.C

>

> ____________________________________________________________

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>

[Guest guest]

I friend of mine just emailed me asking if she could help with

LiverSupport. WOW........ So.I sent her an invite to group. She is a PBCer

and a long time member .........she knows a lot about all this stuff.

PLUS.she is a wonderful gal.........her name is Claudette....... I am happy

right now. We have this front now that is happily

keeping hurricane Bill off the coast so we are fine..........Same sort of

front we have had most of the summer ....we are calling this the year of no

summer. Soon it will be fall........sigh. My green bean now have a fungus

so will have to pull and burn.........One of my fav veggies too. So far my

cukes and squashes are ok.they have more air around them. The red

squirrel and chippys are madly stashing away seed for winter....we love to

feed them .along with the birds. I always miss my hummingbirds after they

leave but I will have them until end of Sept. I make their food sweeter

from now on to give them more energy for their long flight to come.

I have been happily painting these past few days .actually I use pen and ink

and add a bit of water color. I love to do mixed media. Need to

order another Unkers now as I gave my last jar to my neighbor when she

injured her hand...... I hope all are doing as well as possible and if

anyone has questions to please post them. Also, anyone want to just post

about their days feel free. We ARE more then a walking liver disease.

Joanne

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[Guest guest]

Hello, Everyone. Thank you for the introduction, Joanne. I am new to

this liver group but not new to PBC or other PBC support groups in the

USA and Canada.

My name is Claudette (aka " Arwen " ). I was diagnosed with PBC in 1992

just after I turned 43. I've been described as having a classic case of

PBC. In other words, my PBC has followed the usual progression.

I have not been active in any PBC group for a couple of years or so as I

was trying just to get on with LIVING and not being obsessed with my

chronic liver disease. Plus, I all but lost my vision due to a cataract

in one eye and had a mysterious ailment in my " good " eye. The

mysterious ailment turned out to be scar tissue from cataract surgery

seven years ago. It was easily fixed with laser treatment. I walked

out of the surgery clinic about 15 minutes later with my vision totally

restored in that eye. Two week later my eye doctor did cataract surgery

on my other eye, and my vision was totally restored. It was like coming

back from the dead!

I've been stage 4 PBC since 2004 and listed for liver transplantation

since June 28, 2006. Actually, now I'm inactive listed, and my

gastroenterologist says that I'm " holding my own. " However, my coloring

has been a lot more yellow recently. Other than that I look like I have

a deep tan all year 'round. It goes with the territory of being

end-stage PBC.

I feel good apart from the usual problems. Unbelievable itching all

over, all the time which my doctors can't control; pain from severe

osteo-arthritis which my doctors won't give me anything good for because

of the condition of my liver. I badly need a hip replacement, but no

doctor will touch it because of my liver. So I continue to walk with a

walker. Ugh. I have severe dry eyes and dry mouth. The dry mouth has

caused my teeth to all rot out and break off. My dentist wants to pull

them all out. I haven't come to grips with that yet. Everything that

can be done for my dry eyes has been done. All I can do now is pray and

use lubricating eye drops several times an hour.

For my condition I'm doing well. I'll be glad to help answer any

questions about PBC. I've had 17 years of experience with it and done

numerous research on it over the years. A couple of years ago I took up

doll collecting to give me something fun that I could do at home since

I'm stuck here so much with my bum hip. I also read and write

extensively. My PBC is mostly on the back burner these days, but one

had never completely forget it as it affects almost every aspect of my

life now.

Claudette-MI, 60, stage 4 PBC, dx 1992, listed for liver tx 2006

>

> I friend of mine just emailed me asking if she could help with

> LiverSupport. WOW........ So.I sent her an invite to group. She is a

PBCer

> and a long time member .........she knows a lot about all this stuff.

> PLUS.she is a wonderful gal.........her name is Claudette....... e.

> Joanne