Re: Bob

January 27, 2007

The strange thing is, at first the one doctor said that he definately couid see

fluid,and said that it wasnt just my imagination, and they said they were going

to 'take it off' i suppose by diurectics,and then at some point they were in

there saying how good everything looked,and to follow up with hepatology, but i

cant get in till next friday. That will have been 12 days total since I noticed

this

swelling. Everything I've read says that this can become infected if left

untreated. So we are keeping every document. I am trying to be patient and

positive through all this, but it's very hard. Next friday when I see my

hepatology doctor, I will tell him that I cant stand this pain anymore

and I need pain manegement. If my lft's are so good then they can give me some

real pain meds.

Bob

We had a similar experience, but we were at home at the time.

My husband had ascites where he could not get comfortable no

matter what position he was in. He had difficulty breathing also.

I called the hospital and asked for the TRansplant person on call

and was told in a very cold way not to take him to the emergency

room cause all liver patients have this and it was not an

emergency. That they would not back us up if we did...in other

words we would have to pay the full cost since it wasn't an

emergency. This was suppose to be one of the top doctors who

we talked to. Very cold, rude, and unconcerned. So I called his

gastroenterologist, who took care of my husband, before being turned

over to these doctors instead and he set it up right away to do the

paracentesis and remove the fluid. My husband said it was like

instant relief.

Even though you are seeing a specialist, that doesn't mean you

have to stop seeing your other doctors or be able to contact them

when something like this occurs...you will be released

to go back to these other doctors after the transplant. Try

getting in touch with your former doctor or call this

hepatologist office and ask about having a PARACENTESIS DONE,

since you are in misery.

Some people have no bedside manners and act very immature.

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January 27, 2007

Thanks abijann!

Bob

I have to add a note. Doctors mainly do not like to do a

paracentesis because once they open you up, even just a little

hole in the abdomen...bacteria can enter in and cause an

infection in this fluid inside. They don't take all of the

fluid out of the area, just enough to give relief.

The reason for this is because they have to watch you very

closely as your blood pressure may drop down.

This fluid will also come back. Some people it comes back more

slowly than others. But, if you are having pain and it is becoming

unbearable and you are quite large, then they will proceed with

it. You need to make it clear you want it done.

My husband had this done. Apparently bacteria did get in

through this opening, which is easy to do. Once the instruments

are open in the hospital setting to do this, all the hospital

bacteria can land on it. Later, he ended up with an infection,

though we did not know it at the time, and they gave him

antibiotics to clear it up. They also did a paracentesis

there to remove some of the infected fluid. If an infection

occurs and you are waiting for a liver, they will not

transplant you until the infection is cleared from your body.

We were just fortunate that the antibiotics worked, right in

time when the organ became available and they went ahead with

the transplant.

So, there are a few things to watch for when having this

procedure done: (1) Be sure they watch your blood pressure

when they are taking the fluid. (2)if it is a lot of fluid

they are taking from you, ask if you will be given Albumin

Intravenously. (3) Ask the doctor about an infection occurring

and how he can tell when it does and if you can be given

antibiotics. (4) Ask his general opinion on how fast the

fluid may return and how often he thinks you might need to

have the fluid removed next time.

Please let us know how you are doing. Don't be afraid to

ask us any questions or where to go on the internet for

information. We are here to help in any way we can.

Even if it is just sharing our own experiences with you.

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January 29, 2007

Thanks again for your kind words. I got the idea of finding a support group from

Sharon. I can truly say that I feel supported. She was diagnosed

with a strange malady which involves her head losing its support from the

ligaments and so her spine is jamming into the hole in her head and

compressing her brain stem. So she found a support group and through them found

out that one of the top surgeons in the US was in the

process of moving to one of our suburbs,and had an appointment with him as soon

as he arrived. Now folks have added Aurora,Colorado

to the list of where to travel to have scull base surgery performed. I have

great hope that this man can fix her and my liver will start to

improve so we can get back to fishing, camping in our teepee,etc..You may not be

able to give me courage, but you and your husband

give me hope. and you give me comfort. One of the fellows in my AA group got a

new liver and was doing pretty ok last time I saw him.

How is your husband doing today? And how are you doing today ?

Bob

I wish I could in some way give you courage to face the things you

are going through. I'm so sorry to hear about your wife...she

definitely needs you right now just as much as you need her.

I quite understand where you are coming from as both my husband

and I are not well. We lean on each other and are there for

each other. We both are caregivers and patients, so we see both

sides of the coin. We have grown quite close through all we have

been through. We lift each other up when things become too much

for one of us. We know we have no guarantees with anything and

most, if not all, things are out of our control. It was very

difficult to except that we, now, have pretty much no say

and are at others mercy.

Cirrhosis is a very odd disease. Usually, with other organs,

a person will have symptoms right away and that will send them

to the doctor. With cirrhosis, it is almost like cancer...it

is a silent disease (in many situations) until the liver becomes

so damaged that it's functions are decreased. People can live for

years with cirrhosis and not even know it. Blood tests do not

always show results of a problem. Many people find out they have

this disease by being put through scans for other things and

it happens to show up on the film. Lots of people are

walking around also with Hepatitis and do not know it.

If you could get the medical records of the blood work and

scans you had done with this past doctor, you may find out

that the blood tests may have been normal and the radiologist

was unable to detect a problem with the scan. No test is

100% accurate. Most doctors will take more tests if they

see an abnormal result, but very rarely do another test if

something is in normal range. You may think I'm taking the

side of the doctor here, I'm not. I have found out, from

experience, that not all radiologists nor doctors know what they

are looking at.

My husband looked like a very normal, healthy person. He was

sent to have testing done in the hospital before he was to

have surgery for something else. All tests, he had done,

showed " nothing " to suggest he could not have this surgery.

When he was being taken into the operating room, the anestheiologist

notices a yellowing of his eyes (my husbands surgeon is color

blind)...he stopped the operation right there.

He was to go back to his former doctor...right from the office,

the next week, he was sent to the transplant hospital in liver

failure. The little bit of yellowing in his eyes, which was hardly

noticeable, changed to a complete orange and yellowing of the skin

that fast. I will never forget his coloring and I now get sick to my

stomach when I see someone else with it when we are at the hospital.

I'm letting you know this so you see that this liver disease may not

show that it is there till you are at a point of no return...no tests

showed it before or up until that week. This disease also develops

from many different sources, though, some think it is only

caused by being an alcoholic. The sites that Mac posted

states many of the causes.

I've about lost all hope and found myself depressed lots of

times. Life is not a bed of roses that it's beauty, as we

know it, is always there. We learned to take things slowly

now, try to live each day thankful that we have just this one,

try to realize we have lost complete control over things that

are happening and we have to accept/come to terms with what is

going on.

When I post and do not direct it directly to someone, it is

just me posting my thoughts and experiences. If someone else

is going through the same things, it might help them or they

may disagree with what I say and point it out to me why they

think I'm wrong.

Bob, I will keep you and your wife in my prayers. Please let

us know how both of you are doing.

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January 29, 2007

My wife isnt in a collar now, but she had to wear one last spring when this

neurosurgeon had to fuse her c6 and c7 vertibrae in her neck before

moving on to what we call the 'big bad one'.She basically has a bad headache

that came on thanksgiving day 2002, and never went away.

So in the meantime she takes moriphine sulphate every day along with this

coctail of nsaid drugs. I'm a bit dense, were you implying that your husband

poured the drink in the plant? cause that would definately explain ththe demise

of the plant. I've never been able to grow a houseplant

and our yard is a barren desert, but we have sandy soil and have had several

years of extremely hot summers and drought, so we cant afford to pay for water,

plus I have a big problem watering the ground when people dont have enough to

drink...

Bob

It sounds so painful what your wife is going through. Does

she have to have a cervical collar on all the time? Is she

in traction? I hope that this doctor turned as to be the

best specialist in that field. If you read my last post,

you know we were blessed with one.

I don't have a green thumb, or maybe it is not the right soil.

Anyhow, it sounds interesting what you do. I had one plant that

was my mothers and I was able to keep it alive after she died.

That was till someone handed my husband an alcohol drink and

he didn't know what to do with it, since he never drinks.

Don't think I have to tell you what happened to my plant.

(Smile)...it started to disappear and I had no idea why till

years later when he informed me of it. Haven't had much luck

with anything green since.

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January 31, 2007

Good morning, abijann. Yes this next operation will be to remove the knobby part

of c-2 called the adontoid through the soft pallet (ow!)and permanantly fuse

c-1 through c-4 or even further down. Her condition is genitic, due to

eihlers-danlose syndrome, which makes people very flexable,like the

contortionist in the circus. but also prone to joint injury. Like when we first

got married, she dislocated her jaw while laughing.

This morning I was having a panic attack because I was semi-dreaming about her

and what her life would be If I wern't in it. So I went to wake her but she was

awake, so we talked and I feel much better. My problem is that no amount of life

or anything in it has ever been enough for me.

(including beer which it why I've ended up in this pickle.) And she keeps saying

how unfair this is that i'm finally a sober man, which she prayed for

but I'm so sick. So keep your fingers crossed, cause I havn't even begun to

fight. I'm gonna get well. maybe I'll get a new liver like your husband.

March 15 will be my 6 month sobriety date, and i've lost 100 lbs so I have 40

more to go to qualify if every thing else checks out.

This fellow I know at AA got a liver when his meld score was still fairly low,

cause they found a match, and he's doing ok.

Bob

Are you now talking about your wife having stabilization for

C1 and C2? Was she in a traffic accident that caused this

to happen? I am wondering how they are going to do this, it

would be quite interesting to see how they fix either the

ligaments or fix a fracture in that area and still maintain

mobilization of the head. C1 and C2 are quite different

in shape than the vertebrae farther down. It is because of

them that we can pivot the head in anyway needed.

I hope things go well for her and that she does have one

of the greatest surgeons. To have continual headaches is

the pits.

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February 12, 2007

Thanks for the info.

I really apprecieate it. You are truly amazing. What an ordeal youve been

through to have this wealth of information. Anyway, thanks again.

Bob

I just reread your questions. We did not have a lawyer.

People at the social security office were friendly and

did what they could to answer questions we had. I had

thought about it, but it seems that I knew for certain that

my husband was disabled and I had to show them he was.

The more you have wrong with you, the more chance you will

be considered disabled. Say, you just have back trouble...this

alone would not make you disabled cause if you could sit and

type at a job or do paperwork, you are still able to work.

Now if you had a spinal injury in which you were in constant

pain and on strong pain medication and nausea set in...you

might be considered cause you are tired and exhausted from

the pain and wasn't eatting or resting properly.

Now say you have had a heart attack, cirrhosis and are a

diabetic. Your symptoms and reactions combined could cause

many things to take place with you. You have alot more to

deal with. They have, in their hands, a document of

conditions, symptoms, etc which they look at and compare and

then make a decision, based on that, if you are truly disabled.

If you have ever got a social security statement telling you

how much benefits you will receive for working a certain

amount of time...you will see on there if you have worked

enough to obtain points for disability from them. My husband

was able because he worked 33 years, but I worked 26 and

because I haven't worked in the last few years (at an outside

job)...I am not eligible unless I go with his disability benefit

instead of my own. ( This is just something to look at and ask the

Social Security about when applying).

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February 14, 2007

Sharon is going to help me with it this weekend. We both agree that its too

important for me to do by myself. I showed up for my last hep appointment one

whole day late. I mean I got the date wrong. He saw me anyway, but it was

obvious to everyone

that lactulose alone wasnt working real great, but im better now. Sharon is

having more neurological stuff all the time. We go on the 2nd

for a appt. with the surgeon. I'l definately let you know how it goes. Thanks!

Bob

How did you make out with all the forms for disability?

I sure hope that you are able to get it...the way you have

stated about everything that is wrong, I believe you will.

Your wife definitely should not have any trouble receiving it

in her condition. Is she doing any better? I've been

thinking alot about her ever since you told me how serious

of a condition she has...please keep us posted.

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March 3, 2007

Thanks and God bless you, Abajann.

Bob

I wish you the best and I hope that the surgeon will be

able to help your wife. I can only imagine what she is

going through. She is very fortunate to have you there

with her. Please let us know how she is doing and how

you are doing with the cirrhosis. I will keep you in

my prayers.

________________________________________________________________________________\

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March 7, 2007

Didn't mean to beat you to the punch Bob, but here's the link Abijaan:

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

MaC

This is a very easy to learn, useful site.

abijann <no_reply > wrote:

Really enjoyed the link to the site...don't know where you

found that one...wish I could view more of the other modules

outside of just this one there but cannot seem to get into

them.

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

Food fight? Enjoy some healthy debate

in the Yahoo! Answers Food & Drink Q & A.

March 7, 2007

I was doing a google search of 'Basic pathophysiology of liver disease' and it

was the eighth one down. I got the idea of

pathophysiology from MaC last week. I e-mailed him to ask him what he thought

about the defects in amino acid

metabolism portion. I have a very low bun level and an elevated ammonia level,

which seems to indicate a problem there.

Bob

Really enjoyed the link to the site...don't know where you

found that one...wish I could view more of the other modules

outside of just this one there but cannot seem to get into

them.

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March 7, 2007

Bob, when is your next doctor visit?

As you already know, that an impaired liver has problems breaking down

amino acids which results in less urea output and more ammonia build

up. Which results in the low BUN and the encephalopathy.

I would ask the doctor what you can do to help your liver break down

the amino acids better. Maybe diet? Maybe exercise? But maybe he/she

would have a medical input on what could help the liver facilitate the

break down of amino acids.

I don't have time right now to read up on the amino acid processes.

I'm a little preoccupied with work stuff right now. That's why I

haven't posted so much. It's promotion time for me, and I've been

hitting the books for about eight hours a day for the past couple of

weeks. I test on the 12th and will find out in August how I did.

But, when I get a break here and there I will read up. How is your

Creatinine (sp) levels? I don't know if it will help, but make sure

you drink at least 64oz of water a day. This will help flush your

system of extra toxins.

MaC

>

> I was doing a google search of 'Basic pathophysiology of liver

disease' and it was the eighth one down. I got the idea of

> pathophysiology from MaC last week. I e-mailed him to ask him what

he thought about the defects in amino acid

> metabolism portion. I have a very low bun level and an elevated

ammonia level, which seems to indicate a problem there.

>

> Bob

>

> Really enjoyed the link to the site...don't know where you

> found that one...wish I could view more of the other modules

> outside of just this one there but cannot seem to get into

> them.

>

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March 8, 2007

Thanks, MaC and good luck.

Bob

>

> Really enjoyed the link to the site...don't know where you

> found that one...wish I could view more of the other modules

> outside of just this one there but cannot seem to get into

> them.

>

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>

March 8, 2007

Oh I dont think you're complaining. These days they call it " venting " and I

believe it's actually encouraged. When my best friend

Ardis was in the hospital in hepato-renal failure, the nurse gave her english

muffins. She had celiac disease. When Sharon

had her c-6, c-7 fusion last spring, she woke up with a very sore throat from

the intubation, so I asked the nurse for

something. It took them five hours to get a bottle of chloroseptic from the

pharmacy, because her doctor had to order it, and he

was in another surgery. Then the night nurse didnt wake her up on time for pain

meds and she had to chase the pain all night

long. This time, her pain doc is going to manage that aspect. I'm quite sure you

have some horrer stories.

Bob

Are you not sure the librium isn't what made the food good?

They keep adding to the hospital, where we go, by leaps and bounds...

I think we already paid for a full wing through our insurance.

To be honest, the food wasn't all that bad...but when you are

used to home cooked, it doesn't match up too well. Of course

the food is prepared hours ahead of time and placed on trays

and escorted through the hospital and may sit there on a

cart until they get through testing you and by then everything

on the plate tastes like foam rubber. That is the only thing

I can compare it to. It steams itself underneath the protective

cover till it cooks twice.

I like someone to explain to me how an one aspirin inside the

hospital costs about $5.00 and you can buy a whole bottle outside

the hospital for less than that. Never fiqured that one out as

yet. Maybe it is those little packets they place each pill

in so the nurse can keep it sterile till the patient receives it.

What do you think?

It seems I'm doing alot of complaining lately, but maybe if

someone else is going through this also, they will know they

are not alone.

I wonder what happened to gsaunders and how tillys sister is

doing now and if they know anymore about how her mother is doing.

Have you heard anything from them?

I got my husband a birthday card with a pin stuck on it that

says, " I've survived damn near everything " and believe me he

has. Told him to wear it whenever he is in the hospital again,

which I hope he never has to be.

________________________________________________________________________________\

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March 10, 2007

I had forgotten that you had told of the other patient with the same name...

geez. Two? What are the chances. So, on a diffrent note, here's the Sharon

update; We saw the neurosurgeon yesterday. He examined her and said that he was

definately becoming

worried about some of the findings, so she will have new x-rays, another MRI and

a 3-d ct scan. When he has all those films

then we will all sit down and make a plan. He said that for now he expects a

three month recouperation from the surgery.

She wanted me to tell you that she had given me permission to share her

experience on this site. Its gonna be strange cause she

has been taking care of me, and I'll have to dig deep, and take care of her

again, but you know I love her, and she has stood by

me through all of my troubles. We've been watching this show called

'intervention' about folks with addictions, and it hits so

close to home. I feel bad for all those people because some of them like myself

will recover from thier addiction,and then have

to face the reality that thier addiction has left them with permanant physical

damage. I'm so blessed that she isnt holding that against

me now, and besides ,we have this new challenge that we're facing, but we're

facing it together.

Bob

I just found out that there wasn't just one more patient that had

the same name as my husband who was on the transplant list and

was on the same floor after receiving a transplant, there was

another one. I didn't know there were two others. We were

down there visiting the people who took care of him while he

was in the hospital there, cause he had an appointment with a

doctor there. The nutritionist he had there told us that.

You said I could probably state alot of horror stories, you

bet I can and it was mostly because of other patients having

the same name as my husband. The got their files mixed up,

they tried to give the wrong blood and medications, they billed

the wrong patient, they tried to get authorizations from our

insurance for the other patients, they diagnosed the wrong

patient with the wrong thing, etc. Scared isn't the word for

it all, life threatening definitely.

________________________________________________________________________________\

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March 16, 2007

I think you are right about the non compliance part. I will contact him and let

him know that I've decided to hold off on taking it

untill after Sharon's surgery. This med requires close monitering of liver

enzymes and its got me spooked a bit.

Bob

The doctors has a job of weighing the pros and cons of taking

a medication. All drugs have a tremondously long lists of don'ts

on them. If a patient would read them, they would probably think

really hard before taking any of them at all...that is why the

pharmacist gets to see the original pamphlet on the drug and

the patient is given a brief summary...so it doesn't scare them.

You have a right to decide not to take the drug...but, once the

doctor prescribes it and you do not adhere to what you are to

do, it can be taken as being non-compliant which is not good

for any patient who may want to be placed on the transplant

list. It doesn't sound serious unless they take this as being

non compliant with taking the authorized needed drugs after you

go through the transplant.. .see what I mean? The best thing

to do, is get in touch with the doctor office and discuss with

them about any concerns you have with the medication.. .if you

think it would do more harm than good. The drugs companies have

to point out every single complication that develops with the

drug even if it only affects a few people out of trillions... they

have to do this to protect against law suits.

As far as this drug is concerned, it does state on there that

it affects the liver and should be evaluated to be sure you

need to be on it.

The only thing that I can tell you is to let the doctor decide

after you talk with him about your concerns, if you trust him.

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March 17, 2007

Hey Bob,

I agree with Abijann. If you have concerns it's best to call the doctors office

and let them know. Maybe he will prescribe something else. Of course if you tell

him that your going to hold off on taking the medication he's going to assume

the itching isn't that bad to begin with.

Abijann posted about ursodiol and I'm pretty sure that is what my wife was

taking. Her itching was bad earlier on in the disease but it seemed to become

more tolerable as time went on. I don't know why. But from what I remember she

didn't complain much about it.

I posted many months ago about how antihistamines help with itching. Or was it

histamines? I think Abijann may remember. But anyway, itching is a good topic,

because I'm sure many here are. (Itching that is.) I can only imagine how

difficult that is to have all day and all night.

I have a couple of sites I'm reading about it and will post something shortly.

MaC

Bob Aragon wrote: I

think you are right about the non compliance part. I will contact him and let