Re: My Dad

[Guest guest]

Hi Diane:  My name is Jackie.  Your dad's situation sounds alot like my

husband's.  He had esophageal varices in July 2007.  He had the banding

proceedure done and was doing great for awhile.  When he went back a year and a

half later for them to check for more varices fortunately he had a really good

dr who wanted to know why his liver was enlarged.  (he had also had heart

bypass surgery in April 2004)  All of this led to further investigation which

revealed end stage cirrhosis and 3 cancerous tumors in his liver.  Cirrhosis is

a sneaky disease.  You don't realize how bad your liver is until they actually

go in there with a laprascopic camera and get some pictures of it.  The cancer

surgeon attempted radio frequency ablation on my husband's tumors but wasn't

able to do the proceedure because of the condition of his liver.  He showed me

the pictures.  His liver looked like a car wash sponge, if you can imagine what

that looks like.  He told

me that if someone were to show him the pictures and blood work side by side he

would swear it was from 2 different patients.  Blood work does not give you an

accurate picture of cirrhosis.  To make a long story short, we had my husband

evaluated for transplant and he finally received his new liver on May 26th.  He

is doing great!  We went thru alot prior to transplant but we are now on the

other side of it.  If you would like to email me personally I can give you some

more details.  My email address is jckellermann@....  Keeping you in

prayer!  Jackie

Subject: My Dad

To: livercirrhosissupport

Date: Thursday, July 22, 2010, 9:00 AM

 

Hi my name is Diane and my dad found out last June that he has Non-Alcoholic

Steatohepatitis. He woke up in the middle of the night throwing up blood. He was

rushed to the emergency room at a local hospital and was then transportated to

the hospital where his heart dr. is at. (he has had two by-pass surgeries) A GI

was called in and found out that he had Esophageal Varices. They banded the

veins and after spending about two weeks in the hospital, he was sent home. He

had follow up visits and some more banding, but over-all did really well and

felt good until this June. He gained 9lbs in two days and was admitted into the

hospital for fluid. Even though his stomach was very large, they found no fluid

there, only gases. He did however have fluid in his hands and feet. They were

able to get rid of most of the fluid and the gases in his stomach. It was almost

time for him to have a follow-up visit with his GI to check on the esophageal

varices, so they

decided to do that before he was released from the hospital. When they were

doing the procedure, one of the veins busted and once again he lost alot of

blood. The dr. said that he couldn't get a good band on the vein and that

something else needed to be done. So they decided on the TIPS procedure. That

was done the following day and after spending some more time in the hospital, he

was sent home. After a few days at home he started with the Encaphalopathy

(confusion). They put him on the Lactoluse and it worked ok, but we had to

increase the dosage. He seemed to be getting better, but on July 4th my mom went

in to wake him up to take his medicine and she couldn't get him up. He was sent

to the emergency room and was in a coma. He came out of the coma in a few days,

and his ammonia levels were down, but he still would not respond. So they told

us he was in a semi-come. He stayed at the local hospital for 7 days and was

then transportated hospital that he

normally goes to, when his BNP numbers were 1850 which showed he was in heart

failure. After being there a few days he started to get better and was

remembering things. He was sent to a local nursing home were is is now doing

rehab. While he has been in there his ammonia levels have gone from 25 to 48 (at

which time the meds were increased) to 68 and yesterday the were down to 54.

Even though the levels are still high it is a blessing that they are going down

even just a little bit. I carried him for a follow up visit yesterday and I ask

the dr. why his ammonia went up even though his meds were increased and he just

said " thats how it is " We also found out yesterday that his white blood count is

down to 2.9. It just seems like its one thing after the another. He is coming

home tomorrow from rehab and we are all worried that we won't give him enough

meds, or too much. We have never been told that he is in the ends stages of

cirrhosis, but from all that I

have read, its seems to me that he is. This is a very confusing disease and we

just don't know what to do. Thanks for listening and may God Bless each of you.

Diane

[Guest guest]

First of all, understand that cirrhosis is by definition End Stage Liver

Disease. Once you receive the diagnosis of cirrhosis, you are end stage and

it is time to start asking for a tranplant evaluation, if that is an option

you desire to explore. If not, it is just a matter of controlling the

symptoms as best you can until the time the Lord calls him home. Does he

have a liver specialist (Hepatologist) or is he being followed by his PCP?

If he does not have a specialist, you might want to consider that as an

option. They often can be so much more helpful, even if you aren't

interested in transplant. I was diagnosed with cirrhosis in July 2009 after

burying my husband in Jan 2009, who died of cirrhosis. We are both type II

diabetics and he had other problems that caused him not to seek a

transplant. I have not yet decided whether I will be evaluated or not.

I suppose my most valuable piece of advice would be to get him evaluated for

transplant if he even thinks he might want to consider that. Once the

evaluation is done, the final decision can be made. If he definitely does

not want that, then just do the best you can to help him assure control of

the symptoms. It will not be easy and will at times be the most frustrating

thing you have ever done. There doesn't seem to be real patterns, each

individual is different and each body reacts differently to their disease.

Please keep us posted and please know that my heart and my prayers are with

you and your family.

Many hugs............

Diane C from TN

http://auntdisexperimentallife.blogspot.com/

On Thu, Jul 22, 2010 at 8:00 AM, dianewilkerson77 <

dianewilkerson77@...> wrote:

>

>

> Hi my name is Diane and my dad found out last June that he has

> Non-Alcoholic Steatohepatitis. He woke up in the middle of the night

> throwing up blood. He was rushed to the emergency room at a local hospital

> and was then transportated to the hospital where his heart dr. is at. (he

> has had two by-pass surgeries) A GI was called in and found out that he had

> Esophageal Varices. They banded the veins and after spending about two weeks

> in the hospital, he was sent home. He had follow up visits and some more

> banding, but over-all did really well and felt good until this June. He

> gained 9lbs in two days and was admitted into the hospital for fluid. Even

> though his stomach was very large, they found no fluid there, only gases. He

> did however have fluid in his hands and feet. They were able to get rid of

> most of the fluid and the gases in his stomach. It was almost time for him

> to have a follow-up visit with his GI to check on the esophageal varices, so

> they decided to do that before he was released from the hospital. When they

> were doing the procedure, one of the veins busted and once again he lost

> alot of blood. The dr. said that he couldn't get a good band on the vein and

> that something else needed to be done. So they decided on the TIPS

> procedure. That was done the following day and after spending some more time

> in the hospital, he was sent home. After a few days at home he started with

> the Encaphalopathy (confusion). They put him on the Lactoluse and it worked

> ok, but we had to increase the dosage. He seemed to be getting better, but

> on July 4th my mom went in to wake him up to take his medicine and she

> couldn't get him up. He was sent to the emergency room and was in a coma. He

> came out of the coma in a few days, and his ammonia levels were down, but he

> still would not respond. So they told us he was in a semi-come. He stayed at

> the local hospital for 7 days and was then transportated hospital that he

> normally goes to, when his BNP numbers were 1850 which showed he was in

> heart failure. After being there a few days he started to get better and was

> remembering things. He was sent to a local nursing home were is is now doing

> rehab. While he has been in there his ammonia levels have gone from 25 to 48

> (at which time the meds were increased) to 68 and yesterday the were down to

> 54. Even though the levels are still high it is a blessing that they are

> going down even just a little bit. I carried him for a follow up visit

> yesterday and I ask the dr. why his ammonia went up even though his meds

> were increased and he just said " thats how it is " We also found out

> yesterday that his white blood count is down to 2.9. It just seems like its

> one thing after the another. He is coming home tomorrow from rehab and we

> are all worried that we won't give him enough meds, or too much. We have

> never been told that he is in the ends stages of cirrhosis, but from all

> that I have read, its seems to me that he is. This is a very confusing

> disease and we just don't know what to do. Thanks for listening and may God

> Bless each of you.

> Diane

>

>

>

[Guest guest]

Jackie,

I just wanted to say your story feels my heart with joy and hope!

Roni

> Hi Diane: My name is Jackie. Your dad's situation sounds alot like

> my husband's. He had esophageal varices in July 2007. He had the

> banding proceedure done and was doing great for awhile. When he

> went back a year and a half later for them to check for more varices

> fortunately he had a really good dr who wanted to know why his liver

> was enlarged. (he had also had heart bypass surgery in April 2004)

> All of this led to further investigation which revealed end stage

> cirrhosis and 3 cancerous tumors in his liver. Cirrhosis is a

> sneaky disease. You don't realize how bad your liver is until they

> actually go in there with a laprascopic camera and get some pictures

> of it. The cancer surgeon attempted radio frequency ablation on my

> husband's tumors but wasn't able to do the proceedure because of the

> condition of his liver. He showed me the pictures. His liver

> looked like a car wash sponge, if you can imagine what that looks

> like. He told

> me that if someone were to show him the pictures and blood work side

> by side he would swear it was from 2 different patients. Blood work

> does not give you an accurate picture of cirrhosis. To make a long

> story short, we had my husband evaluated for transplant and he

> finally received his new liver on May 26th. He is doing great! We

> went thru alot prior to transplant but we are now on the other side

> of it. If you would like to email me personally I can give you some

> more details. My email address is jckellermann@.... Keeping

> you in prayer! Jackie

>

>

>

>

> Subject: My Dad

> To: livercirrhosissupport

> Date: Thursday, July 22, 2010, 9:00 AM

>

>

>

> Hi my name is Diane and my dad found out last June that he has Non-

> Alcoholic Steatohepatitis. He woke up in the middle of the night

> throwing up blood. He was rushed to the emergency room at a local

> hospital and was then transportated to the hospital where his heart

> dr. is at. (he has had two by-pass surgeries) A GI was called in and

> found out that he had Esophageal Varices. They banded the veins and

> after spending about two weeks in the hospital, he was sent home. He

> had follow up visits and some more banding, but over-all did really

> well and felt good until this June. He gained 9lbs in two days and

> was admitted into the hospital for fluid. Even though his stomach

> was very large, they found no fluid there, only gases. He did

> however have fluid in his hands and feet. They were able to get rid

> of most of the fluid and the gases in his stomach. It was almost

> time for him to have a follow-up visit with his GI to check on the

> esophageal varices, so they

> decided to do that before he was released from the hospital. When

> they were doing the procedure, one of the veins busted and once

> again he lost alot of blood. The dr. said that he couldn't get a

> good band on the vein and that something else needed to be done. So

> they decided on the TIPS procedure. That was done the following day

> and after spending some more time in the hospital, he was sent home.

> After a few days at home he started with the Encaphalopathy

> (confusion). They put him on the Lactoluse and it worked ok, but we

> had to increase the dosage. He seemed to be getting better, but on

> July 4th my mom went in to wake him up to take his medicine and she

> couldn't get him up. He was sent to the emergency room and was in a

> coma. He came out of the coma in a few days, and his ammonia levels

> were down, but he still would not respond. So they told us he was in

> a semi-come. He stayed at the local hospital for 7 days and was then

> transportated hospital that he

> normally goes to, when his BNP numbers were 1850 which showed he was

> in heart failure. After being there a few days he started to get

> better and was remembering things. He was sent to a local nursing

> home were is is now doing rehab. While he has been in there his

> ammonia levels have gone from 25 to 48 (at which time the meds were

> increased) to 68 and yesterday the were down to 54. Even though the

> levels are still high it is a blessing that they are going down even

> just a little bit. I carried him for a follow up visit yesterday and

> I ask the dr. why his ammonia went up even though his meds were

> increased and he just said " thats how it is " We also found out

> yesterday that his white blood count is down to 2.9. It just seems

> like its one thing after the another. He is coming home tomorrow

> from rehab and we are all worried that we won't give him enough

> meds, or too much. We have never been told that he is in the ends

> stages of cirrhosis, but from all that I

> have read, its seems to me that he is. This is a very confusing

> disease and we just don't know what to do. Thanks for listening and

> may God Bless each of you.

> Diane

>

>