Hello

August 4, 2008

What I did was start asking for copies of labs, CTscan reports and occasionally

will ask to review my charts. They have never told me no. I suspect that if one

doesn't ask for these the Physician just assumes you are leaving up to her/him?

Now, you being a third party, your Mom the patient, they may have balked at that

notion? Sometimes you'll have to wait a day or so to get the Radiologist CT scan

report and unless you are pretty much well schooled in Anatomy/Phis. they can be

hard to understand. A computer and a good search engine can make things a little

more understandable. Unless you are a medical professional NEVER and I repeat

NEVER use it to make your own diagnosis. It will however give you some questions

to ask the Physician.

Good Luck.

CLE

Subject: Re: Hello

To: livercirrhosissupport

Date: Monday, August 4, 2008, 10:57 AM

I don't understand why it took so long to diagnose. St. Utah is

such a small town with few doctors. Some of the ones we have see so

many elderly patients that you end up being just a number to them. My

moms Gastro. Doc. acts that way and there is not another one we can go

to in this town. I believe he just didn't really care what was wrong

with my mom. One time we went to an appointment with my mom and he

started talking about her having diabetes and all this other

information. Well my mom does not have diabetes, he was talking about

another patient. Unbelievable to say the least. My mom had her

gallbladder taken out 2 years ago. When we got all her hospital

records a couple months ago, it says that he saw severe scarring on

the liver when he did the surgery. They never gave that information to

us or my mother back then. I would think that was malpractice.

> > > > > > >

> > > > > > > Hi to everyone, my name is Kurt and I am the

> primary care

> > > giver for

> > > > > > > my wife who was told she has non-alcoholic

> cirrhosis of

> the liver.

> > > > > > > According to her doctors she is in stage 4.

> > > > > > > This was found out after being treated for

> continued pain

> after an

> > > > > > > operation.

> > > > > > > I also lost a sister in March of this year

from

> liver cancer.

> > > > > > >

> > > > > > > I was asked by my wife how I am handling all

the

> stress of

> taking

> > > > > > > care of her, my sister passing away, and

helping

> another

> > > sister who

> > > > > > > son passed away a year ago, and having some

> problems. She

> > > asked who

> > > > > > > do I talk to about my concerns and feelings.

> Thinking to

> myself I

> > > > > > > have never really sat down and talked to

anyone

> yet, but I

> would

> > > > > > > like to know how other care givers handle

their

> stress, who do

> > > they

> > > > > > > talk to etc.

> > > > > > >

> > > > > > > Oh what is bad(possible good), my wife

is/was a

> hospice nurse,

> > > so I

> > > > > > > know the doctors can bs her.

> > > > > > >

> > > > > > > Anyway sorry to ramble on, and thanks for

letting

> me join.

> > > > > > >

> > > > > > > Kurt

> > > > > > >

> > > > > > I am so sorry to hear about your wife. My mother

was

> just

> diagnosed

> > > > > > with Cirrhosis of the liver in feb. 2008. She has

been

> in

> and out of

> > > > > > the emergency room 7 times in 3 months. She is

also in

> the later

> > > > > > stages of liver Cirrhosis. She has been living

with my

> husband,

> > > > > > daughter and I for a month. It is very draining

to

> take care of

> > > her. I

> > > > > > also need some support. I think I need to get

some

> hospice care.

> > > I was

> > > > > > just wondering if your wife is bed ridden. My

mother

> is not yet.

> > > Well

> > > > > > keep smiling the best you can.

> > > > > >

> > > > > > [Non-text portions of this message have been

removed]

> > > > > >

> > > > >

> > > >

> > > > --

> > > > Jan H

> > > >

August 4, 2008

Jan

My mom sure has had some Quack Quack doctors also. When the

encephalopathy and dementia symptoms started with my mom they kept

saying she had Bipolar (which she never had or never was diagnosed

with0. It took our family a long time to find a doctor who would

actually help her. Her PCP is really awesome, he orders all the tests

she needs.

> > > > > > > > >

> > > > > > > > > Hi to everyone, my name is Kurt and I am the

> > > primary care

> > > > > giver for

> > > > > > > > > my wife who was told she has non-alcoholic

> > > cirrhosis of

> > > the liver.

> > > > > > > > > According to her doctors she is in stage 4.

> > > > > > > > > This was found out after being treated for

> > > continued pain

> > > after an

> > > > > > > > > operation.

> > > > > > > > > I also lost a sister in March of this year from

> > > liver cancer.

> > > > > > > > >

> > > > > > > > > I was asked by my wife how I am handling all the

> > > stress of

> > > taking

> > > > > > > > > care of her, my sister passing away, and helping

> > > another

> > > > > sister who

> > > > > > > > > son passed away a year ago, and having some

> > > problems. She

> > > > > asked who

> > > > > > > > > do I talk to about my concerns and feelings.

> > > Thinking to

> > > myself I

> > > > > > > > > have never really sat down and talked to anyone

> > > yet, but I

> > > would

> > > > > > > > > like to know how other care givers handle their

> > > stress, who do

> > > > > they

> > > > > > > > > talk to etc.

> > > > > > > > >

> > > > > > > > > Oh what is bad(possible good), my wife is/was a

> > > hospice nurse,

> > > > > so I

> > > > > > > > > know the doctors can bs her.

> > > > > > > > >

> > > > > > > > > Anyway sorry to ramble on, and thanks for letting

> > > me join.

> > > > > > > > >

> > > > > > > > > Kurt

> > > > > > > > >

> > > > > > > > I am so sorry to hear about your wife. My mother was

> > > just

> > > diagnosed

> > > > > > > > with Cirrhosis of the liver in feb. 2008. She has been

> > > in

> > > and out of

> > > > > > > > the emergency room 7 times in 3 months. She is also in

> > > the later

> > > > > > > > stages of liver Cirrhosis. She has been living with my

> > > husband,

> > > > > > > > daughter and I for a month. It is very draining to

> > > take care of

> > > > > her. I

> > > > > > > > also need some support. I think I need to get some

> > > hospice care.

> > > > > I was

> > > > > > > > just wondering if your wife is bed ridden. My mother

> > > is not yet.

> > > > > Well

> > > > > > > > keep smiling the best you can.

> > > > > > > >

August 4, 2008

Chief little Eagle

My mother has a good PCP finally. He reads the results to me and

orders the tests she needs. Thank goodness we found a doctor who cares

about his patients.

> > > > > > > >

> > > > > > > > Hi to everyone, my name is Kurt and I am the

> > primary care

> > > > giver for

> > > > > > > > my wife who was told she has non-alcoholic

> > cirrhosis of

> > the liver.

> > > > > > > > According to her doctors she is in stage 4.

> > > > > > > > This was found out after being treated for

> > continued pain

> > after an

> > > > > > > > operation.

> > > > > > > > I also lost a sister in March of this year

> from

> > liver cancer.

> > > > > > > >

> > > > > > > > I was asked by my wife how I am handling all

> the

> > stress of

> > taking

> > > > > > > > care of her, my sister passing away, and

> helping

> > another

> > > > sister who

> > > > > > > > son passed away a year ago, and having some

> > problems. She

> > > > asked who

> > > > > > > > do I talk to about my concerns and feelings.

> > Thinking to

> > myself I

> > > > > > > > have never really sat down and talked to

> anyone

> > yet, but I

> > would

> > > > > > > > like to know how other care givers handle

> their

> > stress, who do

> > > > they

> > > > > > > > talk to etc.

> > > > > > > >

> > > > > > > > Oh what is bad(possible good), my wife

> is/was a

> > hospice nurse,

> > > > so I

> > > > > > > > know the doctors can bs her.

> > > > > > > >

> > > > > > > > Anyway sorry to ramble on, and thanks for

> letting

> > me join.

> > > > > > > >

> > > > > > > > Kurt

> > > > > > > >

> > > > > > > I am so sorry to hear about your wife. My mother

> was

> > just

> > diagnosed

> > > > > > > with Cirrhosis of the liver in feb. 2008. She has

> been

> > in

> > and out of

> > > > > > > the emergency room 7 times in 3 months. She is

> also in

> > the later

> > > > > > > stages of liver Cirrhosis. She has been living

> with my

> > husband,

> > > > > > > daughter and I for a month. It is very draining

> to

> > take care of

> > > > her. I

> > > > > > > also need some support. I think I need to get

> some

> > hospice care.

> > > > I was

> > > > > > > just wondering if your wife is bed ridden. My

> mother

> > is not yet.

> > > > Well

> > > > > > > keep smiling the best you can.

> > > > > > >

> > > > > > > [Non-text portions of this message have been

> removed]

> > > > > > >

> > > > > >

> > > > >

> > > > > --

> > > > > Jan H

> > > > >

August 24, 2008

Thanks for your warm welcome and yes I am very upset with all of my

issues and doctors errors. I have now come to the point that none of

us can live forever and I have 2 choices (1) I can sit and be

depressed and give up and let this diease control me or (2) Accept

that I have liver failure and pick myself up and live each day to it

fullest and I will take control of my liver and health care and LIVE

LAUGH and LOVE each day of my life.

Jackie

>

> Hi, Jackie. My name is Bobby aka RWE which stands for

robertwalkingeagle. I am so so sorry to hear about you and your

liver. Wow, I would be SO pissed. I mean, I kind of am, because I

never knew I was an alcoholic, seriously, I thought that alcoholics

were drunk all the time, and got the shakes, and drank for breakfast,

etc. I worked hard every day, only drank beer, after work, at HOME.

Well, I have end stage liver diease. I have terrible pain, and I am

on morphine. You had your gallbladder out and now you have end stage

liver disease. I am here if you want to vent, and this group is

great, we are glad to have you as a friend. I'm really sorry. I just

came home from dinner and a movie with friends, my wife and I haven't

been out for ONE YEAR. Can you believe that? And I saw your post, and

I am so sad. I am going to say a prayer for you right now, because

it's all I can do. Love, Bobby, aka RWE.

> Sent via BlackBerry from T-Mobile

>

> Hello

>

> Hi

> I am Jackie and I have stage 4 end stage liver disease. I was

diagnosed in Sept 07 after being put in the hospital for the worst

pain I had ever had before.the sharp and stabbing pain was under my

left rib cage and under my right rib area was a cramming like pain. I

was in the hospital for 17 days going though every blood test out

there, CAT and MRI and xrays of my whole body. Everything was coming

back okay except some of my liver test were alittle off. So they did

a liver biopsy and WOW I not only have stage 4 liver disease but I

also have only 20% of my liver working. The other 80% is cirrhosis

they say.

> I am in shock now!! HOW can this be true?? I never smoked, I

never did drugs;I have no tattoos I have no Hep A B C my gallbladder

is out no problems there. SO HOW can this be right I ask?? Well in

Jan 07 I had abdomal surgrey and it went sour Doctor error..Well

anyways I was in alot of pain and Morphine was not working for me. So

they started me on VicodinES every 6 hours and gave me shots of

TORADOL(anti-inflamatory) every 8 hours for 16 days. I was pain free

but Toradol shots are not to be given for more then 5 days because

they kill the liver. So now I know how I got it. I had been telling

the doctor I feel tierd and nausa and bad pains in my stomach and

cant sleep at night but sleepy in the daytime. they said that it was

me healing from my surgrey still. Well I now have a Doctor following

me for a transplant one day at the U of Mich and I have the greatest

husband and cargiver and my rock of support to help me thru all this

I could

> not make it with out him..

> Sorry for such a long story but now you all know about me and I

look forward reading and learning from you too

> ..

> God bless all of you

> Jackie

>

August 24, 2008

-Thank you for the warm welcome and I look forward to getting to know

and enjoy the supportive and careing people I have seen on here.

Thanks

Jackie

-- In livercirrhosissupport , " Diane Chandler "

wrote:

>

> Hi Jackie and welcome to the group. I am so sorry to hear about

your

> illness and even more so since it seems to have been brought on by

> error on the part of your healthcare provider.

>

> I don't have ESLD, but I am the caregiver for my husband, age 54,

who

> has it. I know you will find the support and answers to some of

your

> questions here. This group has been a God-send for me. Just to

know

> there are others out there going through what we're going through

and

> who are so willing to share has been such a great blessing to me.

>

> Please know that you and your husband are in my prayers daily and

be

> sure to keep us updated regarding the status of your transplant

> listing. God bless!

>

> Love and hugs............

>

> Diane C. from TN

>

> >

> > Hi

> > I am Jackie and I have stage 4 end stage liver disease. I was

> diagnosed in Sept 07 after being put in the hospital for the worst

> pain I had ever had before.the sharp and stabbing pain was under

my

> left rib cage and under my right rib area was a cramming like pain.

I

> was in the hospital for 17 days going though every blood test out

> there, CAT and MRI and xrays of my whole body. Everything was

coming

> back okay except some of my liver test were alittle off. So they

did

> a liver biopsy and WOW I not only have stage 4 liver disease but I

> also have only 20% of my liver working. The other 80% is cirrhosis

> they say.

> > I am in shock now!! HOW can this be true?? I never smoked, I

> never did drugs;I have no tattoos I have no Hep A B C my

gallbladder

> is out no problems there. SO HOW can this be right I ask?? Well in

> Jan 07 I had abdomal surgrey and it went sour Doctor error..Well

> anyways I was in alot of pain and Morphine was not working for me.

So

> they started me on VicodinES every 6 hours and gave me shots of

> TORADOL(anti-inflamatory) every 8 hours for 16 days. I was pain

free

> but Toradol shots are not to be given for more then 5 days because

> they kill the liver. So now I know how I got it. I had been telling

> the doctor I feel tierd and nausa and bad pains in my stomach and

> cant sleep at night but sleepy in the daytime. they said that it

was

> me healing from my surgrey still. Well I now have a Doctor

following

> me for a transplant one day at the U of Mich and I have the

greatest

> husband and cargiver and my rock of support to help me thru all

this

> I could

> > not make it with out him..

> > Sorry for such a long story but now you all know about me and

I

> look forward reading and learning from you too

> > ..

> > God bless all of you

> > Jackie

> >

August 24, 2008

Hi Jackie,

Saw your post to RWE and just wanted to say that I think your

attitude toward all this is fabulous! In my opinion, successful

experiences with any difficulties in life begin with a good

attitude. You have been a blessing to me already! God bless!

Hugs............

Diane C. from TN

>

> -Thank you for the warm welcome and I look forward to getting to

know

> and enjoy the supportive and careing people I have seen on here.

> Thanks

> Jackie

August 24, 2008

I cannot believe that they gave you toradol for 16 days. They gave it too my

wife , but only for 5 days, but I was terrified by it because of this-

http://www.rd.com/living-healthy/night-shift-nightmare/article38715.html

After her last surgery this last May 31, I begged her to not take the toradol,

they had given her a prescription of it, and I am so afraid of it. I hope you

are going to sue them. Love, Bobby, aka RWE