New to the group

November 27, 2008

Hello everyone, I am new to this group but not new to the fight to

recover our kids. I have seen a lot of posts about a Dr. Peng. There

are a few that come up on a google search so I was wondering if someone

could point me in the right direct to make contact?

September 14, 2009

Becky - I am sorry to hear about your father's problems. I am surprise

about your experience with the VA. Years ago they were very bad, but I

heard not too long ago that they had some of the best hospitals in the US.

Ed has no other coverage besides the VA and medicare, so he really puts up a

fuss when I suggest he go to another hospital closer than the VA which is

about 150 miles away. It must vary from hospital to hospital.

Many of the symptoms you mentioned such as the mental confusion are common

with cirrhosis patients as the disease progresses. Did they do a

biopsy during the gall bladder surgery. I had been diagnosed by biopsy, but

when they did my gall bladder surgery, they did a second biopsy which gave

me a stage of cirrhosis. When I had a tube and ovary removed, the surgeon

did as you say take a gander at the liver because she knew I had

cirrhosis.But, she didn't do a biopsy.

We do understand your reality. But it doesn't really seem real I am sure.

Sometimes it seems as if it is a bad dream and sooner or later you will wake

up, but for those of us with cirrhosis and those who care for people with

cirrhosis, it is real. I am sure many others here will answer your

questions too. You are welcome in our group. Jan H

On Mon, Sep 14, 2009 at 12:12 PM, Becky wrote:

> Hello everyone. My name is Becky. My 63 y.o. Father has cirrhosis of the

> liver (NASH). Nearly 5 years ago, my dad went in to have his gall bladder

> removed. When the surgeon came out to let us know how the surgery went, he

> said all went well, BUT....that was when he told us that while inside, they

> got a gander at the liver and noticed that he had cirrhosis. Fast forward 2

> years later....I call my dad one day because he normally had called me by

> then. When he answered I noticed that he didn't sound right. At first asked

> if he was sick (like a cold or something). He said no, however after

> talking

> a bit he told me he fell several times the night before and didn't know why

> and that the last time he could not get up and laid in the floor the rest

> of

> the night until he was finally able to crawl to the chair. I noticed while

> talking that he seemed a little off in the head...in other words it was

> like

> he didn't comprehend things very well. In a week and a half we took him to

> the VA ER 3 times because he just got released with NO TESTS the first

> time.

> .I mean, he's diabetic and they didn't even check his blood sugar. The

> second time he went because he was the point that the pain in his back was

> so bad that he was having to use a walker and even still had difficulty

> walking AND the confusion was even worse. Again, they just let him go.

> After

> the first visit I brought him home to our house to help me. Ok...the third

> visit was because he had got really bad mentally and physically and I also

> noticed that his urine was REAL dark orange...so much so you could barely

> see through it. I told them that I thought he may have an UTI but they said

> they didn't think so....didn't do any test to even see. They put him in the

> hospital ONLY because I told them that I refused to take him back home

> until

> they find out what was going on. Well, they kept him...one night and didn't

> do anything. By that point he was so bad and because he is a big guy, I

> couldn't physically help him (I have a disabled daughter and that's

> physically difficult all by itself), anyway, so we got him into an area

> nursing home.

>

> During the next couple of weeks he began to see things that weren't really

> there. He went to the ER at a regular hospital. He was there for nearly a

> month and they ran all sorts of tests. It was then that we learned of

> elevated ammonia levels and encephalopathy (sp?). ALSO, he indeed had an

> UTI

> and because it went so long without treatment it had turned septic (sp?).

> We

> really thought we were going to lose him during that time. While at the

> nursing home, my dad was in and out of the hospital almost every week for

> one thing or another and after nearly 6 months and having a really bad run

> in with the nurse on duty that day refusing to send him to the ER (he was

> in

> BAD shape), I finally called the ambulance myself and while he was in the

> hospital I got him in another nursing home. That's where he's been for 2

> years now. They got him lined out really good and except for an occasional

> flare up with his ammonia levels, he has been pretty with it! His back

> however would prove to be a big problem and be what has kept him in the

> nursing home all this time. Because he still had bills that needed to be

> paid, he needed some help with paying for the nursing home and his medicare

> and state insurance would not pay after so long. SO, as much as we hated to

> go back to the VA we did in order for him to be able to get the nursing

> home

> paid for through them. Although they have gotten better in a few ways they

> still drag feet (in regards to his back problem).

>

> Anyway, things seem to be taking a turn for the worse. For the last several

> months dad's either been very confused or his attitude has been off. As a

> matter of fact he's in the hospital right now because he's got so confused

> and is wetting and soiling on himself and seems to not even realize it.

> He's

> also had problems with his protein level getting low also. I'd like to hear

> about other peoples experience with it either personally or through a loved

> one. Actually, I don't love the fact that anyone has to actually be living

> this experience but given the reality of things...I'm sure you understand.

>

> Becky

> Illinois

>

September 14, 2009

Hi Becky, I am Diane from TN. I am 51 and have recently been diagnosed

with Grade 2, Stage 4 cirrhosis. My doctor tells me that, if I take care of

myself, I can reasonably expect about another 2 years before decompenstaing

complications occur. I do already have protal hypertension with an enlarged

spleen and liver. Also, my husband of 33+ years died on Jan. 26 of this year of

cirrhosis. He was 54. Both of us got cirrchosis due to NASH and metabolic

syndrome. My husband also had a genetic pre-disposition to liver disease that

we never knew about until he already had decompensated cirrhosis.

What your father is experiencing right now is all too familiar to me. Terry,

my late husband, started to urinate and soil himself without seemingly being

aware of it about 3-4 months before he passed away. Actually, it was so much

better when he was not aware of it because when he was, he was so totally

humiliated that it broke my heart!

Welcome to our group. We are a very close knit group who seem more like a big

extended family. Ask any question you may have and I'm pretty sure someone will

be able to answer you! I am praying for your Dad and for you.

Warm Hugs...........

Di

http://auntdisexperimentallife.blogspot.com/

________________________________

To: livercirrhosissupport

Sent: Monday, September 14, 2009 2:12:34 PM

Subject: New to the group

Hello everyone. My name is Becky. My 63 y.o. Father has cirrhosis of the

liver (NASH). Nearly 5 years ago, my dad went in to have his gall bladder

removed. When the surgeon came out to let us know how the surgery went, he

said all went well, BUT....that was when he told us that while inside, they

got a gander at the liver and noticed that he had cirrhosis. Fast forward 2

years later....I call my dad one day because he normally had called me by

then. When he answered I noticed that he didn't sound right. At first asked

if he was sick (like a cold or something). He said no, however after talking

a bit he told me he fell several times the night before and didn't know why

and that the last time he could not get up and laid in the floor the rest of

the night until he was finally able to crawl to the chair. I noticed while

talking that he seemed a little off in the head...in other words it was like

he didn't comprehend things very well. In a week and a half we took him to

the VA ER 3 times because he just got released with NO TESTS the first time.

..I mean, he's diabetic and they didn't even check his blood sugar. The

second time he went because he was the point that the pain in his back was

so bad that he was having to use a walker and even still had difficulty

walking AND the confusion was even worse. Again, they just let him go. After

the first visit I brought him home to our house to help me. Ok...the third

visit was because he had got really bad mentally and physically and I also

noticed that his urine was REAL dark orange...so much so you could barely

see through it. I told them that I thought he may have an UTI but they said

they didn't think so....didn't do any test to even see. They put him in the

hospital ONLY because I told them that I refused to take him back home until

they find out what was going on. Well, they kept him...one night and didn't

do anything. By that point he was so bad and because he is a big guy, I

couldn't physically help him (I have a disabled daughter and that's

physically difficult all by itself), anyway, so we got him into an area

nursing home.

During the next couple of weeks he began to see things that weren't really

there. He went to the ER at a regular hospital. He was there for nearly a

month and they ran all sorts of tests. It was then that we learned of

elevated ammonia levels and encephalopathy (sp?). ALSO, he indeed had an UTI

and because it went so long without treatment it had turned septic (sp?). We

really thought we were going to lose him during that time. While at the

nursing home, my dad was in and out of the hospital almost every week for

one thing or another and after nearly 6 months and having a really bad run

in with the nurse on duty that day refusing to send him to the ER (he was in

BAD shape), I finally called the ambulance myself and while he was in the

hospital I got him in another nursing home. That's where he's been for 2

years now. They got him lined out really good and except for an occasional

flare up with his ammonia levels, he has been pretty with it! His back

however would prove to be a big problem and be what has kept him in the

nursing home all this time. Because he still had bills that needed to be

paid, he needed some help with paying for the nursing home and his medicare

and state insurance would not pay after so long. SO, as much as we hated to

go back to the VA we did in order for him to be able to get the nursing home

paid for through them. Although they have gotten better in a few ways they

still drag feet (in regards to his back problem).

Anyway, things seem to be taking a turn for the worse. For the last several

months dad's either been very confused or his attitude has been off. As a

matter of fact he's in the hospital right now because he's got so confused

and is wetting and soiling on himself and seems to not even realize it. He's

also had problems with his protein level getting low also. I'd like to hear

about other peoples experience with it either personally or through a loved

one. Actually, I don't love the fact that anyone has to actually be living

this experience but given the reality of things...I'm sure you understand.

Becky

Illinois

September 14, 2009

Diane:

My Husband Dave was diagnosed recently at Emory. At the time a biopsy couldn't

be done. My Question is, without a biopsy can you determine what stage

cirrhosis your in and how and what is Grade.. The First time i heard about

Grade.. Dave did have a sonogram and 5 1/2 liters of fluid off his abdomen.

Please Help me understand, still new at this..

God Bless,

Bea

________________________________

To: livercirrhosissupport

Sent: Monday, September 14, 2009 6:08:08 PM

Subject: Re: New to the group

Hi Becky, I am Diane from TN. I am 51 and have recently been diagnosed with

Grade 2, Stage 4 cirrhosis. My doctor tells me that, if I take care of myself,

I can reasonably expect about another 2 years before decompenstaing

complications occur. I do already have protal hypertension with an enlarged

spleen and liver. Also, my husband of 33+ years died on Jan. 26 of this year of

cirrhosis. He was 54. Both of us got cirrchosis due to NASH and metabolic

syndrome. My husband also had a genetic pre-disposition to liver disease that

we never knew about until he already had decompensated cirrhosis.

What your father is experiencing right now is all too familiar to me. Terry, my

late husband, started to urinate and soil himself without seemingly being aware

of it about 3-4 months before he passed away. Actually, it was so much better

when he was not aware of it because when he was, he was so totally humiliated

that it broke my heart!

Welcome to our group. We are a very close knit group who seem more like a big

extended family. Ask any question you may have and I'm pretty sure someone will

be able to answer you! I am praying for your Dad and for you.

Warm Hugs........ ...

Di

http://auntdisexper imentallife. blogspot. com/

____________ _________ _________ __

From: Becky <becky1974a@lazernet wireless. net>

To: livercirrhosissuppo rtyahoogroups (DOT) com