Re: Bob

[Guest guest]

Squeek Loud Bob. Loud and often. They should be talking to you about being on

a list now.

Be like my xhusband. I hated the squeeking but sometimes it was pretty funny.

He had a lawyer that would never return his call and had the case forever.

Finally he went down to the lawyers office, was told he was busy, and basically

given the usual brush-off. He told the receptionist " Ok, I just sit right here

and wait " . She says " what are you doing " ?????. He had sat on the FLOOR in

the office and was causing some strange stares for sure. He let her know he

would be there for the duration until the lawyer had time to see him so they

could wrap up this matter.

Well , you can guess what happened. It wasn't long before the lawyer made time

to see him and it wasn't long after that his case was finally finished.

Re: Bob

Great advice Abijann.

Bob,

I just wanted to add. You have to speak up about the transplant center to your

doctor. Don't wait for them. Remember the military, " the squeaky wheel gets the

oil. " ? When my wife was in the hospital her last week, the head physician said

she should have been on the list a year prior. But, her doctor wouldn't refer

her. Instead, he wasted a year doing blood tests, ultra sounds, CT scans MRI's

and paracentesis' . Matter of fact, he never once in the two years ever mention

a transplant center and what it consisted of. Even when he knew she was in liver

failure. His last advice was to go see family.

MaC

abijann <no_reply@yahoogroup s.com> wrote: The surgeon may have taken the

pressure of the portal vein during

your operation and it might have showed it to be normal.

Considering your cirrhosis came from alcohol...it might not

of caused portal hypertension right away. (I'm not positive

of this, I'm theorizing) Alcohol is known to be a blood thinner

and this might be why. If you develop varies, though, then

you may now have portal hypertension for sure.

Pain medication, of the narcotic type, can have a serious effect

on your thinking and will probably enhance your already

encephalopathy. The doctor would have to compare how you were

before you started the medication and how you are now. The

only way, I think he could tell how bad your encephalopathy

could be is through ammonia testing or taking you completely

off of the pain medication until it leaves your body system.

A Meld score of nine is very low on the scale and it would mean

you have a chance to live much longer than someone who is a

39 to 40. The fact that the doctor said that the

macronodules covers the entire liver, to me, means that

cirrhosis is all through your liver and not just in one area.

If this is the case, I would suggest that you start to be

evaluated for transplantation if that is what you want.

They would watch you much more closely, they would place you

on the list and you would know your exact MELD score, and

you will have more of a direct contact with the doctors

involved in your future care.

It is always good to get a second opinion. That way you are

sure of whether the doctor is right or not. I had to think

through what you said that night about the doctors. My

mind hasn't been the best lately either and I wish they would

give me something to help. I will be going for a second

opinion on my supposed operation soon. Please remember

that I'm not a professional and you need to take what I

say with a grain of salt. I'm worried about having an operation

which will take me away from my husband when he might need me...

my nerves are very bad of late...he hasn't been too well either.

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

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[Guest guest]

Ha ha! well, I did something similar with my friend Ardis. When she was in the

hospital, they wouldnt refer her for a

transplant evaluation, cause at CU, the appointment has to be a referral from a

pcp. She had never had one, so I told them

" go ahead, discharge her, I'll take her downstairs to the ER, and we both know

that they are bound by law to see her and she'll

be re admitted, and we both know it. So go ahead. " Later that day a social

worker came to see us and found her a nursing home

and got the transplant appointment. I'm just glad the lawyer didn't call the

cops on your x.

, are you on the list? how is your liver doing? I think about you often,

because you were kinda the first one on this site that

talked to me. Anyway, I'm curious, and you seem very sweet as well as feisty and

witty.

Re: Bob

Great advice Abijann.

Bob,

I just wanted to add. You have to speak up about the transplant center to your

doctor. Don't wait for them. Remember the military, " the squeaky wheel gets the

oil. " ? When my wife was in the hospital her last week, the head physician said

she should have been on the list a year prior. But, her doctor wouldn't refer

her. Instead, he wasted a year doing blood tests, ultra sounds, CT scans MRI's

and paracentesis' . Matter of fact, he never once in the two years ever mention

a transplant center and what it consisted of. Even when he knew she was in liver

failure. His last advice was to go see family.

MaC

abijann <no_reply@yahoogrou p s.com> wrote: The surgeon may have taken the

pressure of the portal vein during

your operation and it might have showed it to be normal.

Considering your cirrhosis came from alcohol...it might not

of caused portal hypertension right away. (I'm not positive

of this, I'm theorizing) Alcohol is known to be a blood thinner

and this might be why. If you develop varies, though, then

you may now have portal hypertension for sure.

Pain medication, of the narcotic type, can have a serious effect

on your thinking and will probably enhance your already

encephalopathy. The doctor would have to compare how you were

before you started the medication and how you are now. The

only way, I think he could tell how bad your encephalopathy

could be is through ammonia testing or taking you completely

off of the pain medication until it leaves your body system.

A Meld score of nine is very low on the scale and it would mean

you have a chance to live much longer than someone who is a

39 to 40. The fact that the doctor said that the

macronodules covers the entire liver, to me, means that

cirrhosis is all through your liver and not just in one area.

If this is the case, I would suggest that you start to be

evaluated for transplantation if that is what you want.

They would watch you much more closely, they would place you

on the list and you would know your exact MELD score, and

you will have more of a direct contact with the doctors

involved in your future care.

It is always good to get a second opinion. That way you are

sure of whether the doctor is right or not. I had to think

through what you said that night about the doctors. My

mind hasn't been the best lately either and I wish they would

give me something to help. I will be going for a second

opinion on my supposed operation soon. Please remember

that I'm not a professional and you need to take what I

say with a grain of salt. I'm worried about having an operation

which will take me away from my husband when he might need me...

my nerves are very bad of late...he hasn't been too well either.

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

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[Guest guest]

.. Thank you Abijann. I found this a week or two back, and this is what my main

concern was concerning BUN...

" Oxydative deaminiation is a process by which the amino radical is removed from

the amino acid thus converting it into two products: a keto acid and ammonia.

Since oxydative deamination results in the production of ammonia, any impairment

of the above function results in a diminution of the blood urea nitrogen level

(BUN) and an increase in the amount of circulating ammonia. Elevated serum

ammonia levels can become extremely toxic, especially to the brain, often

leading to a state called hepatic coma. "

http://www.ece.ncsu.edu/imaging/MedImg/SIMS/Module2/GE2_3.html

Bob

You had me confused on what is wrong with you.

From the results you posted this is what I know.

Like I said before, labs have different reference range on

what they consider normal...so I'm going to compare your

range with what is normal from our lab and explain it more

to you.

INR...this is a international ratio that they develop for

seeing how the blood clots. The normal range for a healthy

person would be (from our lab) 0.88 to 1.14

Since you said your results was 1.1...this is within the

normal range. That means your blood should be clotting fine.

You can also check to see if your PT, Ptt is also within the

normal range. The results of these tests are all, including

the INR located under the Coogulation portion of your sheet.

.....A BAD RESULT WOULD BE: Now if it was 0.66 it would be too low

.....and you could bleed very easily and possible not be able to make

it stop...if it was 1.30 your blood would be clotting too much which

could cause you to take blood thinners to lessen the chance of

more clotting.

>>>>>>>>>>>> >>>>>>>>> >>>>>>>>> >>>>>>>>> >>>>>>>>> >>>>>>>>> >>

Now the platelets... platelets are what helps wounds to heal to

stop any bleeding and they also need to be in the normal range.

The normal range from our lab for a healthy person is

130 to 400. You said yours is 150 so this is normal range.

You should have no problem, if you cut yourself with healing fast.

>>>>>>>>>>>> >>>>>>>>> >>>>>>>>> >>>>>>>>> >>>>>>>>> >>>>>>>>> >>>>...

The BUN, which is Blood Urea Nitrogen, isn't used that often in

dealing with cirrhosis, it is used mainly to check for dehydration

and how the kidneys are functioning. The normal range from

our lab is 7 to 18....if your is a 3, this is too low. What it

means, the doctor needs to let you know. I do know that some

people lab results are lower than average all of their lives,

so this might be the case or something is definitely a problem.

>>>>>>>>>>>> >>>>>>>>> >>>>>>>>> >>>>>>>>> >>>>>>>>> >>>>>>>>> >

Collateral are like a vessel that the body forms so the blood

continues to flow to the area needed if it doesn't get enough

blood...for example, they find these in people who have heart

trouble, that they develop to supply the heart with more

blood if part of their heart becomes damaged. They can also

develop when blood isn't getting to a needed area or to handle

an overload. Varies are vessels that develop a weak spot in

them. It is like having a hose where it is very thin in one

area and instead of the pressure of the water running through

the hose and out the end...the pressure in this one area, will

fill with water and balloon outward and if it is very thin,

possibly burst open.

>>>>>>>>>>>> >>>>>>>>> >>>>>>>>> >>>>>>>>> >>>>>>>>> >>>>>>>>> >>....

People who have cirrhosis do develop portal hypertension.

Because of this pressure of the blood not being able to go

through the liver because of liver damage...it goes to other

areas instead, or it backs the blood up into other areas like

the spleen. Spleen enlargement, alone, can come from a blood

problem or a problem with the spleen itself and not have anything

to do with the liver. Many people have their spleen removed

and never have liver problems. Most doctors do not remove

the spleen unless it is over a certain cm, usually above 20 cm.

>>>>>>>>>>>> >>>>>>>>> >>>>>>>>> >>>>>>>>> >>>>>>>>> >>>>>..

Encephalopathy can also come from other diseases, I believe,

besides liver problems.

I do know that other diseases, like heart problems and

pancreatic problems can cause Ascites just as easily as

cirrhosis also. Unless we can see the whole big picture here,

it is hard to say.

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[Guest guest]

Wow thats quite an artical. One thing I'm curious about, is that did your

husband have asterixis ? Ardis did sometimes real

bad but some times not at all, but her hands allways shook. I don't have it but

I'm so clumsy now. I didn't want to say

anything cause I was embarrased, But even though you and MaC told me I shouldnt

drive, I kinda did keep driving

when I thought I was ok but on feb 15 I crashed my truck. I'm glad no one was

hurt , but I not driving anymore.

Bob

I see what you are saying...you are looking at the breakdown of

this ammonia that is usually taken care of in the liver to

produce urea.

You have what is called hyperammonemia ( hyper-means increased,

ammon means ammonia, and emia means blood...so all together

you have an increase of ammonia in your blood)

I am posting an article on here to help you know more about this

condition

http://www.emedicin e.com/PED/ topic1057. htm

The steps:

(1)Protein produces the by product ammonia, when it is used.

(2)Ammonia breaks down into nitrogen, by the liver.

(3)Nitrogen combines with other molecules to form urea.

(4)Urea goes into the blood and is disposed of through the kidneys.

Because the liver is damaged, it never gets pass the first step..

it stops there and the ammonia goes out into the blood which can

pass the blood brain barrier and cause encephalopathy.

The normal person with a health liver goes through all four steps

and does not have this problem.

Of course, since the person who has liver disease never gets

pass the first step because of the cell death inside the

liver, known as cirrhosis, the ammonia is released into the

blood and the less amount of nitrogen is produced by the liver

and the level of the nitrogen and the urea would then decrease.

>>>>>>>>>>>> >>>>>>>>> >>>>>>>>> >>>>>>>>> >>>>>>>>

It is always good, though, to look at the blood work regarding

the kidneys known as Creatine or creatinine and see if that

is in the normal range. This will tell you whether or not

it is the kidneys or the liver where the problem really exists.

However, if the kidneys are not functioning properly and getting

rid of the urea...it will cause the opposite: a rise in the

BUN and Urea levels in the blood.

________________________________________________________________________________\

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[Guest guest]

I'm sorry Abajann, the link isn't working, could you please re- post it ?

thanks.

Bob

Here is a website that my husband has: it shows the dogs

he raised. Pepper, Cookie where are two main pups, they are

both passed away now. These are a very rare breed since they

are the large Deckers. We got our stock dogs from Milton Decker

and he gave my husband the best ones since he was going to close

his kennel and raise horses.

We don't have any recent pictures of ourselve...they were taken

years ago. I do have a few of my husband, but since he has

been so sick, he doesn't want me to post them.

http://www.geocitie s.com/tcb51/ RatTerriers. html

If you go to the backyard page three, you will see a white deer,

which is rare. Someone must of let the deer out cause it was

tame and we could walk up to it and if you had food it would

come to you. During deer season, a lady up the road decided

to shoot it and she was fined heavily because everyone knew

it was tame here and left it alone...it was common knowledge. I

believe they took her and her son's license away from them.

She shot it intentionally and then put her son's tag on it.

You will see about 30 wild turkeys...those pictures were taken

in our backyard and also of the squirrel and other deer.

That is only if you are interested in dogs and wildlife.

________________________________________________________________________________\

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[Guest guest]

We would all still like to see pictures, even if they are from " yesterday " ...

Like you said, we are all family.

I'll even post a baby picture of myself if you put some pictures in the folder.

MaC

abijann <no_reply > wrote:

http://www.geocities.com/tcb51/RatTerriers.html

The link to my husband's site " seems " to be working now.

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[Guest guest]

Wow. You are such a strong person. Again ,he is very blessed to have you. God

has put you two together for a reason. I'm convinced that the reason Ardis and I

became friends is so I could see with my own eyes what I was doing to my health

and learn my lesson in time to help Sharon the way you help your husband. Sharon

mentioned this morning when we were

discussing your post about the mega dose, is it too late to get a second opinion

? Is that out of the question or are you too far down the road ? Last week we

met with my primary care doctor who has been very insufficient through this

whole ordeal and

I handed her a note from Sharon that basically said " BOB has the following

signs and symptoms of end stage liver disease

as detailed by the national library of medicine and the national institutes of

health, and asked her to amend my medical

record to reflect reality rather than her hypothysis that zoloft is what I need

to make me well. We'll see if she complies.

God bless you and your loved one , Abajann.

Bob

What you said in your post about your loved one is exactly how

I feel about my husband. My husband, after having his transplant

and leaving the ICU, was taken back to the ICU and had to have a

bronkoscopy done on him...When he came from having that done, I was

in his room and I pulled the chair close to the head of his bed and

put his head against my shoulder and just a little later they came

and told me I had to sign a form for him to be put back on

the respirator and to hook up others things...they said he

was too weak to continue to try and breathe on his own.

After they did that, I was with him again. I had found out

that very morning that his sister had died of cancer who he

loved dearly. Visiting hours were almost over and the ICU

doctor came and told me he had Legionnaire pneumonia and that

they did not know for certain if he would be strong enough to

pull through this. The first thing I told her was that his

sister died and I wanted the nurses to stop anyone coming to

visit him, if I wasn't there, from telling him about his sister

and to not tell him that the pneumonia he had was Legionnaires.

The doctor agreed with me. I was made to leave the ICU.

When I left, a nurse happened to come by from the ICU and I

stopped her...I told her I wanted to talk to the head nurse.

She waited till she came on duty and came and got me. I told

the head nurse that I didn't care about her rules or what their

policy was...that they were keeping me away from someone I loved

so dearly and I wanted to be right with him...she knew his

diagnoses and asked the nurse taking care of him if it would

be alright. The nurse said I could be with him after the

assessment so I had to leave the ICU again. The sweet nurse

that got the head nurse for me took me to a quiet room and

I sat there for a moment and then the tears started running

down my face. The picture that came to my mind was a double

funeral with both him and his sister side by side in a casket.

I looked out the window to the window room

my husband was in and I couldn't take my eyes off of it.

The nurse brought the chaplain in to speak with me, but the

pain inside my chest...it was like my heart was melting right

where it was. It was just like I was dying along with him.

And to this day I still feel that way. The chaplain was

very nice to me but nothing anyone said or did could remove

that pain. As he started to gain his strength back and got

better than I was starting to feel better. I was allowed to

be with him continuely after that and wasn't ever again made

to separate from him. The nurse said that when he heard my

voice it would calm him because it was familiar to him in a

strange environment. The nurse told me he was glad I was there.

The nurses name was and he took such good care of him.

I knew I had to inform my husband about his sister...

but I told myself not to until all the tubing had been removed

from him. As soon as his tubing was removed, He asked me about his

sister. He still wasn't strong enough. I asked his other sister what

am I going to say if he asks me how his sister is and she

said to me, " you tell him she is fine, cause she is " . Those

words stuck with me. He did asked me and I told him that,

but I knew I had to let him know about it before he left the

ICU and so when they mentioned that he might leave there, I

told him. I never, ever kept any secrets from him before

or lied to him about something like this...I thought when he

finds out that I intentionally did not tell him, he would

really be upset. So after I told him about his sister, I

explained to him why I could not tell him. Then I told him

that he just came through having Legionnaire pneumonia. You

should of seen the look on his face. I had told the doctor

that He had had so much wrong with him that telling him that

he had something that serious, could of made him just give up

instead of fighting. He fought with everything he had inside

of him and through all that came after that and is still fighting.

I had just a taste of what it would be like to lose someone I

loved so very much, (though, other loved ones of mine have passed

away) but many here have lost their spouses and

how they go on amazes me. I don't think I would ever be that

strong to be able to go on. I think I would end up a walking

zombie.

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[Guest guest]

I understand a little better, now. I totally agree that one should learn as much

as you can,because sometimes a doctor will not

be very familiar and I've heard so many horror stories.When Ardis was in the

hospital last summer, the attending doctor

came in during morning rounds and examined her and was so pleased that they had

solved all of Ardis' edema in her

ankles, and as they were about to leave, I pointed out to them that the way the

bed was v shaped, all the fluid had settled in her hips.

She had 40 lbs of water in her buttocks that hadn't been there two days earlier.

The doctor got red faced and said " oh my, he's

right " , and re ordered more lasix. From that day forward, I have allways been

leery of ALL doctors. What if I hadn't been there?

My advice to anyone who is sick or taking care of someone who is, learn all you

can about their condition. If you do this, you

will be shocked how many healthcare workers will try to bs you, but wont be able

to. And Abijan,you are the one who first

gave this advice to me and you are absolutly right.

Bob

I will tell you more of our story. I think I've posted this

before and other here may have already heard of it.

My husband had to go through rehabiliation after that. He

was so weak from everything, he didn't have the strength to

sit up in bed. After a little while of doing that and

being able to feed himself, then he had to sit up and place his

feet on the floor...but his muscles being deteriated from having

the cirrhosis and not being worked after the transplant and

the pneumonia, he was suppose to stand up but could not keep

his balance when he did. The nurses had to support him.

Each day he had to do a little more...he had to take a step

and then two and he had to work the wheelchair himself without

my help. We exercised his legs while he laid in bed and he

would push his feet against my hand to try to build up a little

more strength every day. When he started to do well and was

stronger and got his balance back, without being wobbly, we

thought he would be discharged and was all excited about it.

The day we thought they would tell him he could go home, a

guy came in for him to sign papers to have a liver biopsy.

Total shock. No one had said anything to us about it. So,

we didn't sign the papers till we talked to his surgeon. He

had the liver biopsy and they did it by going through the

vein in his neck, so he was put under. When he came through

that, in the recovery room, he got the rigors which caused

his blood pressure to go sky high and then dropped down to

almost nothing...he was back in the ICU again. This is

not all of the story but just the first part of it all.

This was the first 4 to 5 months after the transplant.

He was in the hospital more than he was out the first year and

one-half. You have to realize, though, that my husband has many

medical conditions and others have gone through this surgery

and left the hospital about 10 days afterwards and are doing

great. We haven't really been that lucky. So people reading

this are only seeing the picture of someone who was about

5 times sicker than what they are and what he is going through

just to live. One of his nurses had a transplant and he is

doing great...he didn't take care of my husband but talked

with him about the transplant. We visit the transplant floor

he was on when we go down there and many of the patients are

doing terrific. This one guy only received a partial transplant

from a relative and he was walking and talking and getting ready

for discharge in just about a little over a week stay.

I'm not here to scare anyone...I try to remember that our

situation is quite different from others. Every one has

different problems and different body chemistry and

even different ways of handling pain.

I think of all my husband has gone through and how far he

has come and I know that God had a hand in everything that

has happened cause too many things fell right into place and

too much was way too perfect for man to have done it. I truly

believe that I have seen a miracle and not just something of

chance. I have a little knowledge and I'm not a professional

in any way. But, I think God has given me enough to help

my husband in any way I can exactly when it was necessary.

I stress highly that patient and their caregivers learn to

know as much as they can about their own care, so they

can be the one to take charge and know when something doesn't

seem quite right.

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[Guest guest]

I'm discussing your post with Sharon right now, because If they wont let me stay

with her at least for a night or two after her

surgery, I might hire a private nurse to sit with her. When Ardis was on the

liver transplant floor, the lady in the bed next to her had a feeding tube, and

terrible encephalopathy, and they couldnt keep her from trying to yank it out,

and her husband was just exausted

so the man hired a nurse to sit with his wife through the night. I am going to

make this arrangement just in case, because

what gives me nightmares is someone like whoever wouldnt give your husband a

BLANKET ! Man, if that dont beat all.

Bob

When I received my husband blood work, the day he was

transported to the hospital...I saw his sodium in the critical

range. I knew that had something to do with the heart but did

not know, at that time, how serious it was.

I got in touch with the doctor

office and had to fight with a secretary who denied me to

talk with the doctor. I bypassed her and got the Meld score

nurse and faxed it to her...she took it to the doctor and

within a couple of minutes I was transporting him, myself, to our

hometown hospital to life lite him to the transplant hospital.

Had I not known that the sodium level was important... my

husband may not be alive right now. The Meld score now has

the sodium level being looked at with all their patients, they

added it.

.....

Another example:

My husband had told the nurse taking care of him his symptoms

of the room feeling wet and cold. She didn't pay any attention

to him. When I came in the next morning, he told me them.

When I asked the nurse if the problem he was having in his

chest was normal. She told me that he just had to use the

machine to help clear his lungs out. My husband has asthma.

He started to tell me about having difficulty breathing, so

I notified the nurses station about his asthma and asked for

medication (inhaler) for it. For a half an hour to an hour,

nothing was brought. He then said to me that he had pain

near the top part of his left lung. I got on that call

button and told them that I wanted a nurse there right now.

Whenever a patient even suggests pain in the chest, it is a

definite do something right now situation... I knew it was serious

then...he was diagnosed with Legionnaires pneumonia.

My husband never complains. He won't say something unless it

becomes too much for him and then he might mention it. He

would rather not bother the nurses and just lie there than

be a pain in the butt, so to speak. Yet, he told the nurse

this and asked for a blanket so he could remain warm the

night before and she gave him none. Because he had left the ICU,

they didn't know I was with him and I had to leave after visiting

hours. I tell people now, that if you have someone who is seriously

ill...see if a family member can stay with them all the time.

The nurses don't know the patient that well and they may

tend to not listen because they hear patients tell them their

problems all the time and become accustom to them and only go

on what they evaluate them as. They swabbed his mouth then

and sent it to the lab, which lead to the bronkoscopy.

I don't blame anyone in this, there is a shortage of nurses and

trying to take care of many more patients, with no one to help,

is a very difficult task. But, this also places the patient at

a higher risk factor. My trust that my husband will ever

be taken care of perfectly has vanished. I don't have the

knowledge of a doctor or nurse...but I do know him and I do

know enough to help him get through this. Ardis was so

blest for you to be with her. I wish every patient had an

avocate to be with them and speak on their behalf.

This was just an example of a couple of incidents, this isn't

all of them...but, I hope it will make everyone see that a

patient doesn't really have the ability to fight for their

rights in a setting like this and they need someone there who

observes and can be sure their care is the best.

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[Guest guest]

Good Morning Bob.

I hope your sleeping better now. I got a WHOLE 4 HRS last night woohoooo LOL.

I went to a 3 week inpatient chronic pain clinic. It has the best thing I ve

ever done for myself, I learned sooo much there. I do stretching exercises, deep

breathing & meditation but most of all, HUMOR helps. You might notice that when

your laughing, your not thinking about the pain. Or destraction, being absorbed

in a good movie, book or friends helps too.

I take a nap EVERYDAY !! If I dont get my nap, my pain & exhaustion turn me

into an ugly ugly gal LOL. Our life revolves around NAP TIME. It helps alot. I

ve tried not napping, hoping to sleep more at night. It didnt work. So I nap.

After many yrs of this, I finally went to my doc & told him I WANT SOME

QUALITY OF LIFE !! & he put me on vicodin. I actually take less then I m allowed

but it does take the edge off ( down to a 5 on the pain scale) & I take klonopin

for sleep. I dont know if these are options for you, talk to your doc. I dont

believe you should have to live in intolerable pain.

Luckily for me, most docs up here BELIEVE in fibro. I also went to counseling

& shrinks & they agreed that I m not a nut & this is REAL so that helped too. If

your friends gf needs support, I know a good fibro support group on the net. I

can send you the link.

I ve met 2 people who ve had chairi. Both of them had surgery & are doing

very well. I just wanted to let you know. I m sure your worried about your wife

but the surgery can & will help her. I m keeping you both in my prayers too.

awww family s. I never knew how strange mine was till now LOL. But seriously,

people react in all sorts of strange ways to stress & fear. My mom JUST realized

that her bone cancer pain will never stop. They ve been telling her that for 2

months & she just got it?

It s the stress, she didnt ' hear' it. Maybe some of your family is in denial.

If Bob doesnt look that sick, they wont worry so much? I know its hard on you,

but this is hard on them too. One thing I learned in the clinic, when your sick,

your whole family gets to share it with you. Your not the only one being

affected by this. The MAIN one, but not the only one.

I ve done 2 things, 1: I ll try to see if its the stress or fear talking. If

it is, I let it pass & ignore it.

The other is: If some of my family ( or anyone) is treating me badly. I m

gone. I m sorry but I just dont need this crap ( I m sure you dont either)

Sometimes we have to get the ' toxic' folks out of our lives. Its for our own

good & you know we need to take care of ourselves right now. Negative stuff is

bad for anyone.

I hope you have a great day today. I plan on it. A little gardening, a nice

nap & some family time, sounds good to me

Enjoy today Bob, it wont come again.

many hugs for both of you,

ps: if you have cable, watch PLANET EARTH tonight on the Discovery Channel.

Its freaking awesome, beautiful video & very relaxing.

Bob Aragon wrote:

Good morning. I did get one hour of sleep. I'll probably crash and

burn soon. How are you this morning? I found this pain

relief network that explains pain manegement and some of the stigma, myths, etc.

Have you found the medical community

eager to help you with your fibro myalgia, or do they make you feel like a

hypochondriac? My best friend's girlfriend has it.

She has terrible insomnia and suffers terribly. Does your pain manegement work

ok ? I'm very sorry that your step sisters can't

be more thoughtful. My family is acting weird too. For a couple of months it was

this intense debate as to how sick I was.

" oh, your not that sick, people live with cirrhosis, just ignore the pain, you

look fine to me " That's just a few of the things they've said.

People can be awful sometimes. Thanks for the encouragment with my new sobriety,

and good for you with yours.:-)

Heres the link to the pain relief network. have a good day !

http://www.painreliefnetwork.org/

Re: Sepet device (((((((((bob))))))))))

I feel for you Bob. I m normally up at 4 am on a good day. sometimes it s 2 or 3

am.

Thank god for puters. People on the other side of the world are up & I have

several friends in England & australia I chat too then. At least we have

something quiet to do.

Bob Aragon <robwalkingeagle@ yahoo.com> wrote:

An article about this device was posted by MaC . I found this tonight. I have

sleep inversion. It's 2:28 am.

http://www.arbios. com/pdf/ABOS% 20PPT%20092206. pdf

____________ _________ _________ _________ _________ _________ _

Don't pick lemons.

See all the new 2007 cars at Yahoo! Autos.

http://autos. yahoo.com/ new_cars. html

[Guest guest]

Thanks for the nice reply. I did go to a pain specialist and he started me on

ocycodone. Not to be confused with oxycontin,

which is time release. These are 5mg pills. Very short acting so if the pain

quiets down, when the drug wears off, I don't have a drug'hangover', if you

will. So far it has helped a lot. Maybe I will have to do the nap thing. Some

days, after I'm up with Sharon at

six,I take my meds, have breakfast, and go back to bed. It makes me feel guilty.

But what the heck.I will ask about the inpatient clinic,as it sounds

interesting. Thanks for the input about family. Anyways, Sharon and I have been

lazing about and now to market we will go.

CIAO. PS thanks again for everything

Re: Sepet device (((((((((bob) )))))))))

I feel for you Bob. I m normally up at 4 am on a good day. sometimes it s 2 or 3

am.

Thank god for puters. People on the other side of the world are up & I have

several friends in England & australia I chat too then. At least we have

something quiet to do.

Bob Aragon <robwalkingeagle@ yahoo.com> wrote:

An article about this device was posted by MaC . I found this tonight. I have

sleep inversion. It's 2:28 am.

http://www.arbios. com/pdf/ABOS% 20PPT%20092206. pdf

____________ _________ _________ _________ _________ _________ _

Don't pick lemons.

See all the new 2007 cars at Yahoo! Autos.

http://autos. yahoo.com/ new_cars. html

[Guest guest]

GOOD MORNING BOB & SHARON.

Its no problem chatting with you Bob. I enjoy it I m glad you have some

pain control & I hope you continue to get better. I m impressed with you, your

taking those hard steps to help yourself. You should be proud. I ll bet Sharon

is proud of you too.

I take hydrocodone, my doc wants me on oxycontin but vicidon can be cut in

half on days when its not too bad, which helps me keep it down it bit. I hate

taking all these meds. I ll try the natural route first, then meds if I have

too. I just started Enablex for my spastic bladder, woulda thought a bladder

could hurt that bad ?!! of course, its bad for your liver but I tried the

natural treatments, no go. Yes, I m drinking a TON of water, I have a good liver

now, when I quit drinking it was pretty enlarged. ( it seems like MOST meds are

bad for your liver)

ahhhh the guilt, I was talking to my therapist about that. I was telling him

I used to do this & this & this & now.... I m lucky to get a bath somedays. He

said " well, your still doing the same thing " HUH? he said " your still doing

everything you CAN do " Give yourself a break hun, your doing everything you can

do. Your sick, get the rest you need.

Have a good day hun, lots of emails to catch up on. If I can help in any way

let me know.

warm hugs,

ps: I reply to emails because my fibro fog is bad & I need the original to

know what the heck I m replying to LOL sorry

Bob Aragon wrote:

Thanks for the nice reply. I did go to a pain specialist and he

started me on ocycodone. Not to be confused with oxycontin,

which is time release. These are 5mg pills. Very short acting so if the pain

quiets down, when the drug wears off, I don't have a drug'hangover', if you

will. So far it has helped a lot. Maybe I will have to do the nap thing. Some

days, after I'm up with Sharon at

six,I take my meds, have breakfast, and go back to bed. It makes me feel guilty.

But what the heck.I will ask about the inpatient clinic,as it sounds

interesting. Thanks for the input about family. Anyways, Sharon and I have been

lazing about and now to market we will go.

CIAO. PS thanks again for everything

Re: Sepet device (((((((((bob) )))))))))

I feel for you Bob. I m normally up at 4 am on a good day. sometimes it s 2 or 3

am.

Thank god for puters. People on the other side of the world are up & I have

several friends in England & australia I chat too then. At least we have

something quiet to do.

Bob Aragon <robwalkingeagle@ yahoo.com> wrote:

An article about this device was posted by MaC . I found this tonight. I have

sleep inversion. It's 2:28 am.

http://www.arbios. com/pdf/ABOS% 20PPT%20092206. pdf

____________ _________ _________ _________ _________ _________ _

Don't pick lemons.

See all the new 2007 cars at Yahoo! Autos.

http://autos. yahoo.com/ new_cars. html

[Guest guest]

Bob, I just wanted to add Ditto's. You've are a wealth of information and post

great links. Most, if not all, end up in my bookmarks.

I hope you and Sharon have a great weekend.

....you too Abijann.

.....and everyone else of course! :-)

MaC

abijann <no_reply > wrote: that

aafp site was a great link, I saved it to read it later...thanks.

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

Ahhh...imagining that irresistible " new car " smell?

Check outnew cars at Yahoo! Autos.

[Guest guest]

Hi, MaC. Thanks for the compliment. All of your posts get bookmarked as well.

Sharon had to help me organize all of my bookmarks into folders, cause it was

getting out of hand. I hope you both

are well and also have a nice weekend. I saw a new GI doctor for a second

oppinion on my liver

disease. He's doing an endo/colonoscopy later this month, and then hopefully

he'll tell me what he thinks. He did say that you could still be compensated

even with some complications, as long as you don't develop ascites or bleeding

varicies. So, we shall see(say a prayer, knock on wood, you know...)

Re: Bob

Bob, I just wanted to add Ditto's. You've are a wealth of

information and post great links. Most, if not all, end up in my bookmarks.

I hope you and Sharon have a great weekend.

....you too Abijann.

.....and everyone else of course! :-)

MaC

abijann <no_reply@yahoogroup s.com> wrote: that

aafp site was a great link, I saved it to read it later...thanks.

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

Ahhh...imagining that irresistible " new car " smell?

Check outnew cars at Yahoo! Autos.

[Guest guest]

******

I have a good feeling that you will do well and that you'll hear good news.

And I think your Doc is right. Your liver can still be well compensated. If it

is still producing all the necessary proteins your body needs to support all the

other organs and blood.

And...even though you have encephalopathy, it may only be secondary to

something. There are studies that show that ammonia isn't the only culprit in

the development of encephalopathy.

I've always wondered if studies were done on cirrhosis patients with

encephalopathy that had 1) a spleen vs no spleen 2) an appendix vs no appendix

and 3)gallbladder vs. no gallbladder. AND if it made a difference in the process

of toxins in the blood and renal vasodilatation.

I also wonder if HDL cholesterol plays a role. Large amounts of HDL removes the

bad LDL from the blood by binding to them. They then fill the receptors in the

intestines. Which may block toxins from being absorbed into the blood. And/or

they may be binded to the HDL and reabsorbed into the liver.

Anyway,

I have a feeling you will do well on your next doctors visit. And you're in my

prayers as well.

Besides, I know we both have good friends in high places that look out for us.

MaC

Bob Aragon wrote:

Hi, MaC. Thanks for the compliment. All of your posts get bookmarked as well.

Sharon had to help me organize all of my bookmarks into folders, cause it was

getting out of hand. I hope you both

are well and also have a nice weekend. I saw a new GI doctor for a second

oppinion on my liver

disease. He's doing an endo/colonoscopy later this month, and then hopefully

he'll tell me what he thinks. He did say that you could still be compensated

even with some complications, as long as you don't develop ascites or bleeding

varicies. So, we shall see(say a prayer, knock on wood, you know...)

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

Ahhh...imagining that irresistible " new car " smell?

Check outnew cars at Yahoo! Autos.

[Guest guest]

And, as I told MaC, I save your posts in my boomarks, too. Sharon is going to

have head

traction on the 30th, and then from there, the neuro-surgeon will give his

recomendations and set a date, make a plan.

Bob

that aafp site was a great link, I saved it to read it

later...thanks.

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[Guest guest]

Disregard the part about the HDL thing. I had that all wrong. :-)

Hi, MaC. Thanks for the compliment. All of your posts get

bookmarked as well. Sharon had to help me organize all of my bookmarks

into folders, cause it was getting out of hand. I hope you both

> are well and also have a nice weekend. I saw a new GI doctor for a

second oppinion on my liver

> disease. He's doing an endo/colonoscopy later this month, and then

hopefully he'll tell me what he thinks. He did say that you could

still be compensated even with some complications, as long as you

don't develop ascites or bleeding varicies. So, we shall see(say a

prayer, knock on wood, you know...)

>

>

>

>

>

>

>

>

> ---------------------------------

> Ahhh...imagining that irresistible " new car " smell?

> Check outnew cars at Yahoo! Autos.

>

>

[Guest guest]

Thanks for asking about me Abajann. As my mother would have said, " I'm

doing fair to midlin " . The next scheduled torture is next Thursday

the 3rd. I will be in traction most of the day followed by an MRI

while still in traction. We are hoping to have the surgery date set

for sometime in May. I will also be applying for access-a-ride. They

have a program especially for short term disabilities such as surgery,

recovery from a car accident, etc. Bob found a web site called

CaringBridge. The exact purpose is to keep folks updated on someone's

medial condition. Since this may be helpful to anyone with a cronic

medical condition, I will make sure Bob posts the general information

for everyone. Once everything is in place and I have an address for

my site, Bob will forward directions on how to check in on us. This

will allow him to put all the updated information in one place for the

everyone who wants to know.

Sharon

>

> How is Sharon doing. You had quoted the 30th for her surgery, I

> believe. Please let her know we are very concerned about her.

>

> I am so glad that you have transportation and are able to go places

> now. I hope they can take you to the hospital when you want to

> see Sharon. They have a transport thing in our area called " Cars "

> but it is for the elderly and not the disabled.

>

> I'm glad you posted before Mac left us. I sure am going to

> miss him. Please keep us posted how you and Sharon are doing.

> I know it will be hard to do this once she is admitted and

> has surgery...but, even a little something so we here know

> you are okay.

>

[Guest guest]

Hi, Abijann. I'm just exausted, and I have to get up early tommorrow because I

have to be at the hospital early. Last friday my daughter became very ill during

my birthday dinner, and by saturday

she was needing the ER. They did a CT and ultrasound, and didn't see anything

too alarming

so they sent her home with a prescription for pain and nausea meds. By monday,

she was even worse, so we took her back. They did another CT, and because they

couldn't see anything,

they wanted to send her home again. They said it was a kidney infection. I said

NO, you will admit her!! They did, and her surgeon for prior stomach by-pass saw

the CT, and scheduled a one hour lap -diagnostic which turned out to be a

major open bowel resection that lasted 5 hours.

They removed 150 cm of completely dead, and rotted small intestine. My daughter

is so sick.

Sharon went through with her head traction on thursday, as my daughter was in

the ICU, and I

would not have done well in the strict environment of the ICU with my ammonia

levels

going up and down like a rollercoaster. I had some WILD halluciations last night

after I

left Sharon to have a night of sedated rest after her harrowing head/traction-CT

scan yesterday.

For the first time since I went through DT's, I was really scared. The trees out

back were

dancing to music. I took an extra dose of my super duper magic syrup, and I got

much better. So, I'll try to keep you posted. Thanks, Bobby

Bob

How are things going on your end of the world? Haven't

heard much about how you guys are doing...Please post

something even if it is just a short, brief note...okay?

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__________________________________________________