Abijann

[Guest guest]

Abijian,

You seem to be extremely educated in this, is there any P.O. Box, or fax,

anything that I could you 's records for you to look over?

I too am afraid to give you a phone # online, please e-mail me direct at

jolynn.smith@...

Thanks,

Jo Lynn

abijann <no_reply > wrote:

We had blood work drawn that said our anti-rejection drug was

in the 5 or 6 range. Then, all of a sudden there was one test

that said it was 2. The doctor could have put us on more

medication but did not. They waited for two more tests results

to come through. They showed normal range again.

No test is 100% accurate. It can depend on if you ate when you

were not suppose to eat, the time they took the test, who took

the test, who read the test results, etc. It can depend on alot

of things.

According to the results of your blood work that you posted...

it looks like most was in normal range. The two was just

slightly low but nothing to be concerned about.

However the one test did seem to be high. That was

the GGTP.

GGTP stands for Gamma-glutamyl transpeptidase. That is also

an enzyme. It is a test to check for liver disease, bile ducts,

and kidney problems. It helps the doctor to determine whether you

have a liver or bile duct disorders and not a bone disease.

Different labs have different levels and I have found that

there is differences between what they consider normal.

One said 12 to 65 was normal, another said 0 to 51 IU/L.

IU/L means international units per liter so I'm thinking that

this last one is correct. Higher levels can be caused by

congestive heart failure, congestion of bile ducts, cirrhosis,

liver blood deficiency, tumor, hepatitis, pancreatitis or renal

disease. There are some things that can effect this test

though...drinking a moderate amount of alcohol can increase

blood levels of this enzyme for up to 60 hours. Also someone

who takes phenobarbital. Also if someone did not follow a

fast before having the test done.

I would look at a number of your other tests and see how they

differ from the one you posted here. If the GGTP seems to

stay elevated in the high range...then you might ask your

doctor about it. If it seems to go down closer to normal, it

may be because someone goofed at the lab work.

Hope this is of some help.

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[Guest guest]

You are right, it is difficult to read between the lines sometimes because we

cannot see one another face to face. I am just a blunt person, just out with

it, lol. i walked around on egg shells for most of my life with my mom, then my

ex husband of 19 years and suffered so many types of abuse along the way. used

to just keep my mouth shut and was a door mat, basically. saying that, i try

hard not to dwell in the past, and am a much different person now at the age of

47. i see that i have a short fuse lately. i am just so angry and worn out

having to run to so many different doc apptments, and being a needle cushion

everytime i turn around. also dealing with social security is grating on my last

nerve, too. i have been quite positive about the health probs in the last few

years. needless to say, not feeling that way recently.

Jann, i would have never guessed that you are depressed so much, from your

messages. I am sorry to hear that you are experiencing so much of that. i have

had a life long battle with depression, and i know how debiitating it can be. i

pray you feel much lighter today. thank you for the communication, it helps

alot.

You asked if i would share my story, i thought i had did that a long time ago,

but i will try my best to compose some of it very soon. i had the ultra sound

yesterday, and have a followup appt next tuesday. upon 1st hearing that the

AFP blood test was a tumor marker, i was petrified. but it seems that the

causes of it being elevated can be many things. like too much medication, at

least thats what the ultrsound lady said.

wishing everyone here a comforting and easy day. huggs , J

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[Guest guest]

Its no problem, abijann, fibro is a strange illness, I can do some light cooking

& getting meds set up & some very light cleaning for my sis but the next day my

muscles will spasm up & then it hurts badly & I can barely move.( a day or 2 of

rest will fix that) I have to watch how much activity I do everyday or I have

what s called a Fibro Flare ( OUCH !! it means my pain levels go from a daily 5

to a 15), but they pass. Plus I can be moral support. If I m with Lee Mom can

relax for a day, she ll know someones there, just in case.

But a house that dirty is beyond what I can do even if I wasnt severly

allergic to dust too. With Lee sick for months now +cats+a dusty house in the

first place it makes for LOTS of dust. My bf & son do the cleaning I cant do,

but my sis doesnt have that option & my guys are working enough ( they both work

full time & then help me)

Thank you very much for your suggestions, I will be keeping in touch.

Best wishes to you,

abijann <no_reply > wrote:

Please, disregard my last post...I did not realize that you were

disabled when I posted the last message. I thought you were just ill

since you posted about wanting to go to help with your sister and

clean the house. I thought it was just an allergy to the cats.

If you belong to a church, sometimes people in the church will

volunteer to help others in the community. That is the only

thing else I could think of besides what you stated in your

last post.

Best wishes...please let us know how things turn out for you

and your sister.

love ya

[Guest guest]

Abijan,

I read your post, which as always is spot on.

You wrote this:

They have lost their dreams they had of life in the

future.

That's when I looked back and tried to find when my wife lost her dream.

I saw it one Saturday afternoon in the backyard. I can't explain it. But I know,

at that time she came to terms with her illness/reality. She knew the finality

of her illness. So when you say that....

" They have lost their dreams they had of life in the

future " ....

is..... very meaningful.

I never thought to recollect this. But looking back I think I understand more of

what my wife went through.

Kev

abijann <no_reply > wrote: Your

husband should be seeing a liver specialist, a

Hepatologist. If he has been diagnosed with cirrhosis, they

usually refer him to them depending on how bad the cirrhosis is.

They usually remove the gallbladder, anyhow, when they remove the

liver during transplant. Gall stones can move down into the

ducts and block the flow of bile going from the liver to the

intestines causing the bile to back up into the liver and cause

damage to it. As soon as they saw this on the film, he should

of been referred to the gastroenterologist for testing to be done

and told that certain medication would have to be avoided since

they could cause the liver more stress and damage it further.

Kidney stones are common with people who have cirrhosis.

Urine can turn to an orange to brown color with this disease.

It is good to drink more fluids to keep the kidneys flushed out

but not to overwhelm them. I find drinking something after

each time I urinate, will give my kidneys enough fluid to

keep them clear of build up.

...................................................

Cirrhosis is the death of the cells of the liver.

This cirrhosis may be only in one part of

the liver, or it could be in many areas, or it also could

include the whole liver. Depending on where the cirrhosis is,

will depend on how fast it will progress. If it was just

Hepatitis B, which is an inflammation in the liver, then they

could control it with medication and possibly clear him of

it and he would have a chance to heal. Once it progresses

to definite cirrhosis, it becomes harder for the healing to

take place.

Let me explain: Cells are like little bodies

inside our bodies. They have functions and needs just like

are whole body does. They also reproduce themselves to

take the place of those who die so the human body, as a whole,

can still function. When these cells die naturally, the cells

don't form scarring. The problem is that when the cells die from

cirrhosis taking place it leaves scarring. Instead of the

replacement cells connecting to other cells like them and the

liver remaining smooth like it once was, the new cells

(through reproduction) hit the scarred walls left from the

other cells death and are pushed against the scars causing the new

cells to push against the wall of the liver that will now appear

like little clumps or nodules forming. This also causes a

decrease in the function of the liver to perform what it once did.

As the disease progresses, more of its function will deteriate until

it goes into complete failure. Medication can control how fast

this will occur. If they have caught it early enough, the liver

may heal itself...the later it becomes, the less chance it will

happen.

.............................................

My husband had cirrhosis. He also had kidney stones.

He went into liver failure. He was evaluated for transplant and

placed on the list. He was within a few hours of dying when a

liver became available that matched. He was transplanted and

is now 3 years out from that time. " There is always hope. "

This journey is not an easy one. I wish I could say that it

wasn't like living with a nightmare you wish you could wake

up from but you cannot. We had to find a way to come to

" terms " with what was happening. We tried everything we could and

even looked for a miracle cure. This all brought us closer

together. There were times that I knew he was trying to push

me away but I would not accept that. I was there for the long

haul of it all and his words did not have any effect on me.

Patient feel like they have lost everything and that others

are being pulled down with them. They feel like they become

a burden to those around them. They feel like a great

injustice has been done and it makes them angry. They lash

out at those around them even when they don't mean to harm

others. They have lost their dreams they had of life in the

future. The best thing I can say here is to stay as close

as you can to him...he needs your support and love. Block

out anything that he may say or do to push you away.

Being there for them is one of the " greatest blessing " he

could have right now. Hold on tight and don't let go.

Don't forget your own care, you need to take care of yourself

now more than ever cause he needs you there to take care of him.

Take things one day or one moment at a time. Follow all

his doctors instructions and see if you cannot be right with

him during all his appointments. Write down what the doctor

says and refer back to it when necessary. Try to set up

with a lawyer for power of attorney. Advance directives are

fine, but if you have power of attorney, you will avoid all

the privacy laws and be able to handle everything that is

needed, not just his medical and rights to speak for him,

but to act on his behalf with insurance and bills, etc.

It will save you big headaches later on if you do this

when he is well enough to know what he is signing.

Cirrhosis causes toxins that go to the brain and cause

confusion as it advances...this will make him less able to

sign documents knowing what it says and understanding it.

Take time to go outside and look at the stars, take a little

time to breathe and think of other things besides his illness.

Ask for help whenever you feel like you are becoming overwhelmed

by it all. Don't ever give up on hope. It will be there.

See if he can be started for a evaluation and go through the

testing to be placed on the list. Even if he is placed at

the bottom of the list, being on their early still gives him

a one up on others that are not on there. He may be removed

and still have a greater chance of being put back on faster than

those who haven't tried. If he is with the right doctors now

that can do him the most good, like a hepatologist...he will or

should have the best care possible to help him with any

ailments or symptoms that occur. He will be with the right

people to ask questions of and receive the best answers.

I will tell you, that when you are with doctors that know the

most about your disease...they will be alot more bold in telling

you what your condition is and be more demanding that you follow

what they say to do. They do this because you are being

evaluated for transplant and they want to be sure you want to

live and will do what is necessary not only before but after

you receive the transplant.

If you think of this as a journey and an experience you will

go through together, than the outcome whether good or bad...

you will know you did the best you could. If one of you

decides not to take it together, then the road will be

very difficult for the one who has to face it alone and

" giving up " will be much easier. The road is easier to

travel if someone is there to support or help you along the

way. Take time to relax...talk about the disease, don't

ignore it....learn as much as you can so the unknowns start

to disappear and not be as frightening....don't let death

and illness take away your life by thinking only about it,

live each day as if it was your last..in love, prayer, and

togetherness with good memories and more memories to make

together. Do the best you can to eat properly and now is

the time to take the very best care you can of yourself.

I wish you both the best.

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[Guest guest]

Thanks for the post on E-Coli. I liked the first link and saved it. The others I

have read.

When I step back and look at the liver I am amazed at what it does. Hundreds of

functions going on all at once. And, any one of them can break down and cause

problems.

FYI, I am also trying to learn about acidosis, especially in the liver and

kidneys.

If there was a way to prevent that....

MaC

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[Guest guest]

Thanks,

You are a wealth of knowledge! I wish I had been this interested in human

physiology when I was younger. Maybe I would have become a doctor.

Maybe we could discuss pain management? When do doctors stop treating the

disease and start focusing on pain management? When is it time to tell the

patient there is no hope? Or better yet, how do you tell them?

MaC

abijann <no_reply > wrote:

Cirrhosis and gall bladder pain is " usually " located in the front

near the rib cage on the patient right side.

Back pain could come from the Ascites and the pooling of the fluid in

front of the body causing pain in the back. Imagine carrying liters

upon liters of liquid in front, it would pull on the skeletal muscles

and frame. If pregnant women have back pain, I'm sure anyone with a

large amount of ascites could also have it.

Back pain can also come from a kidney stone or problems with your

kidneys. Kidney stones are known to be so painful that women have

said to me that they would rather have all three children again than

one of them. (I can attest to that)

I do not know how painful pancreatitis is, but pancreatic cancer is

considered tops in the pain field.

Please remember that pain can be in one area and a problem in a

totally different area. This is known as referred pain.

Take for example when someone has a heart attack. The pain isn't

aways located over the heart area, it is felt in the back, jaw, and

arm area. So, this makes me believe that people with cirrhosis,

could very well have back pain also. Another example is

appendicitis pain...it is felt sometimes in the umbilical area.

There are others also. Chiropractor seem to know alot more

about this since they try to straighten the spinal column when

nerves are being pressed on.

These are just a few things to think about. Maybe others here

can fill us in on some of the pain they have had and it's

location.

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