RE: Re: Reading all posts.

[Guest guest]

Holy MOses! Nice to meet you, you brave lady. I don't know if I could go through

what you just described. Every part if the difficult complications are my worst

fears. They start in a list like this; fear of anything in my throat.

Fear of being heavily drugged, fear of not being able to move my extrimities, I

think I'd rather die than be strapped down. Well, This definately is something

we all need to know. I know others who like you said did not have nearly the

rough time you had, but I am so glad that you got your life back, You are an

inspiration. Love Bobby, a gardener in Denver.

Sent via BlackBerry from T-Mobile

Re: Reading all posts.

Hello to Everyone,

I'm brand new here and taking up the suggestion from this very nice

person that suggested we all just jump in and talk to one another.

About 3 years ago I was diagnosed with End Stage Liver Disease

(ESLD). There was no reason for me having it. Much later, I was

diagnosed with primary biliary cirrhosis (immune system destroys the

bile ducts in liver)which can eventually lead to cirrhosis. Whatever

the cause, cirrhosis is cirrhosis, and it pretty much acts the same

with everyone no matter what the cause. I was told I had to get a

transplant if I wanted to live.

I went for my evaluation and was accepted to be listed. My MELD

score at that time was 12. After about one and a half years, my MELD

rose to 15. I was called 3 times for transplant before I finally got

my new liver. I had prepared myself for possible transplant as much

as possible. The day before my transplant I had rode my bicycle on a

mountain trail for 7 miles. I was 47 years old which is young enough

to help during a surgery. I had no other diseases or medical

conditions except my liver failure. I thought I was ready.

The surgery took about 10 hours. I was in the hospital for a little

over 2 months. Six weeks were spent in Transplant ICU. I was on a

ventilator and weaned off after about 5 weeks. I was in a drug

induced coma for the first 3 weeks. If a person can't breathe well

enough on their own after 7 days on a vent, they give you a trach

since the vent is too hard on your throat. I had that for about 6

weeks which is really quite miserable. Having a trach was the worst

part of it. Didn't eat or drink anything by mouth for 6 weeks and

had a feeding tube. I was never hungry though. I never had any pain

from the actual transplant since I was out of it for 3 weeks.

Remembered having sutures vaguely, but woke up one time and they were

gone. They pretty much kept me tied down in bed for the first

month. So I couldn't eat, drink, move, or even talk (trach prevents

it) for at least the first month. I was so happy when they gave me a

talker valve for my trach. It was really odd that I could not even

write anything during that time. I tried really hard, but my hand

would not work right, so it was very difficult to communicate.

Eventually all the tubes came out one by one. After lying around for

6 weeks in bed, I lost all my ability to walk. Could not even stand

on my own. Had to go through weeks of intensive physical therapy

just to be able to get around a little. It was a far cry from 6

weeks earlier when I was riding my bike through the mountains

alongside the river. Muscles waste so fast when you don't use them.

When I got to the point of being able to pull myself up just one

step, I knew I was going to be OK.

So I came home and continued to improve. But it wasn't over yet.

Turns out the vent and trach caused extensive scarring in my throat.

So had to deal with that problem for about a year. I had 80% airway

blockage from scar tissue. Had to sleep sitting up if I could sleep

at all. Took short cat naps out of exhaustion most of the time.

They put a stent in, then took it out. Finally I decided to get some

risky surgery since I could not stand to live that way anymore and

wanted no part of a permanent trach. Two thoracic surgeons removed a

section of my trachea. The surgery was 4 hours long. I had to get

my chin sutured to my chest for 11 days in the hospital. It was very

painful, but the most important thing is that it worked and fixed the

problem. I can breathe again and no trach ever and no more breathing

machines. Amen to that! I just have a large scar across my throat

that looks like someone cut it, but it's a small price to pay for

being able to breathe again.

So my transplant was really a tough time for me. I used to tell

people it's not a surgery for wimps. I don't want to scare anyone

since the success rate is really excellent and that is the most

important fact for anyone facing this surgery to understand. I don't

care how tough I had it for those 2 months or even the year. It

means nothing in the long run of saving my life. A lot of people

don't have nearly as hard a time as mine was. I have seen and heard

from a lot of people that were much sicker than me with other medical

conditions along with their liver disease go through a liver

transplant in a lot less time and back on their feet much sooner than

me.

Today I am doing well. Back to riding my bike again. Working part-

time. Getting ready to plant a garden. Life is back to like it was

long before I ever became sick. No problems with any rejection.

I do like to help others with cirrhosis who have questions whenever I

can. I went through it all from ascites, varices, high ammonia

levels, paracentesis, banding, etc. So nice talking to you all.

Take care.

[Guest guest]

,

I am so sorry to hear what you went through. You are a very strong person! I am

so glad that your story had a happy ending. Welcome to the group. We are glad to

have you.

I'm MaC I joined in April 2006 a few months after my wife passed away from

alcoholic cirrhosis. She was 31. I joined to learn and understand more about the

disease and try to help others who may have gone through what my wife went

through.

Your experience teaches us that we can persevere through life's toughest

challenges. It also humbles me. I will think twice before I complain about any

trivial set backs I usually face in the course of day. What you faced and went

through is amazing and horrific at the same time.

Again, I'm glad you shared that part of your life with us and welcome.

MaC

blhgizmo wrote:

Hello to Everyone,

I'm brand new here and taking up the suggestion from this very nice

person that suggested we all just jump in and talk to one another.

About 3 years ago I was diagnosed with End Stage Liver Disease

(ESLD). There was no reason for me having it. Much later, I was

diagnosed with primary biliary cirrhosis (immune system destroys the

bile ducts in liver)which can eventually lead to cirrhosis. Whatever

the cause, cirrhosis is cirrhosis, and it pretty much acts the same

with everyone no matter what the cause. I was told I had to get a

transplant if I wanted to live.

I went for my evaluation and was accepted to be listed. My MELD

score at that time was 12. After about one and a half years, my MELD

rose to 15. I was called 3 times for transplant before I finally got

my new liver. I had prepared myself for possible transplant as much

as possible. The day before my transplant I had rode my bicycle on a

mountain trail for 7 miles. I was 47 years old which is young enough

to help during a surgery. I had no other diseases or medical

conditions except my liver failure. I thought I was ready.

The surgery took about 10 hours. I was in the hospital for a little

over 2 months. Six weeks were spent in Transplant ICU. I was on a

ventilator and weaned off after about 5 weeks. I was in a drug

induced coma for the first 3 weeks. If a person can't breathe well

enough on their own after 7 days on a vent, they give you a trach

since the vent is too hard on your throat. I had that for about 6

weeks which is really quite miserable. Having a trach was the worst

part of it. Didn't eat or drink anything by mouth for 6 weeks and

had a feeding tube. I was never hungry though. I never had any pain

from the actual transplant since I was out of it for 3 weeks.

Remembered having sutures vaguely, but woke up one time and they were

gone. They pretty much kept me tied down in bed for the first

month. So I couldn't eat, drink, move, or even talk (trach prevents

it) for at least the first month. I was so happy when they gave me a

talker valve for my trach. It was really odd that I could not even

write anything during that time. I tried really hard, but my hand

would not work right, so it was very difficult to communicate.

Eventually all the tubes came out one by one. After lying around for

6 weeks in bed, I lost all my ability to walk. Could not even stand

on my own. Had to go through weeks of intensive physical therapy

just to be able to get around a little. It was a far cry from 6

weeks earlier when I was riding my bike through the mountains

alongside the river. Muscles waste so fast when you don't use them.

When I got to the point of being able to pull myself up just one

step, I knew I was going to be OK.

So I came home and continued to improve. But it wasn't over yet.

Turns out the vent and trach caused extensive scarring in my throat.

So had to deal with that problem for about a year. I had 80% airway

blockage from scar tissue. Had to sleep sitting up if I could sleep

at all. Took short cat naps out of exhaustion most of the time.

They put a stent in, then took it out. Finally I decided to get some

risky surgery since I could not stand to live that way anymore and

wanted no part of a permanent trach. Two thoracic surgeons removed a

section of my trachea. The surgery was 4 hours long. I had to get

my chin sutured to my chest for 11 days in the hospital. It was very

painful, but the most important thing is that it worked and fixed the

problem. I can breathe again and no trach ever and no more breathing

machines. Amen to that! I just have a large scar across my throat

that looks like someone cut it, but it's a small price to pay for

being able to breathe again.

So my transplant was really a tough time for me. I used to tell

people it's not a surgery for wimps. I don't want to scare anyone

since the success rate is really excellent and that is the most

important fact for anyone facing this surgery to understand. I don't

care how tough I had it for those 2 months or even the year. It

means nothing in the long run of saving my life. A lot of people

don't have nearly as hard a time as mine was. I have seen and heard

from a lot of people that were much sicker than me with other medical

conditions along with their liver disease go through a liver

transplant in a lot less time and back on their feet much sooner than

me.

Today I am doing well. Back to riding my bike again. Working part-

time. Getting ready to plant a garden. Life is back to like it was

long before I ever became sick. No problems with any rejection.

I do like to help others with cirrhosis who have questions whenever I

can. I went through it all from ascites, varices, high ammonia

levels, paracentesis, banding, etc. So nice talking to you all.

Take care.

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

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

Whew!

Bless your ever-lovin' little heart, ! You make me feel like an

ingénue!

You know the old saying, " I thought I had it bad until . . . " and your

message/story gives me new courage!

I've been out of it for too long!

I am still betwixt and between with the liver situation. New doctors say my

tests all show normal liver function, though the year-long delays,

postponements of appointments, and just plain lagging on the part of the

medics is taking its toll! There's still that biopsy that another group of

doctors say shows cirrhosis! The ultra sound does not.

Still no word on what the doctors have " decided " about it, but the plot has

thickened somewhat.

Now my problem is strokes -- those " little " TIAs. I had a bad fall with

bruising, then headaches right AT my carotid arteries, spent several days in

hospital and am still waiting (a week now) for results of ultra sound on

carotids.

Before that it was another " small " heart attack, angiograms, renal stints,

and thinning my blood to the point of being scared to get a scratch. Every

scratch is like a faucet for bleeding.

I've not much of an artery left anywhere, so my blood is thinned to the

point of personal distraction! Sometimes I have no idea I'm bleeding till I

hear or feel it dripping. Cramps my style somewhat.

Not only that, but I have a difficult time concentrating long enough to

read/write e-mail.

So . . . since the one place that is willing to treat me will not take my

HMO " insurance, " and it's like the mafia -- I've been working to get OUT of

the HMO and get nothing but runaround. It's like a war with them saying all

is well and my knowing it is not.

I think there is some kind of a rule that since condition X is not

" life-threatening, " it's not going to be fixed under this insurance!

My eyes are getting worse, teeth so bad I can't eat healthy, so I'm getting

ever more quickly to the live-threatening place!

Just another LOL falling apart -- and new and interesting sidelines like

anemia and thyroid problems.

Remember Oliver Wendell Holmes' old one-hoss shay? That's me -- in human

form. [Also the one who sees literary stuff just about everywhere.]

So I'm staying busy fighting that insurance war, making calls, writing

letters, and doing stuff around the house that doesn't require much

concentration -- just cleaning, sewing, knitting, puttering . . .

.. . . and missing y'all and hoping that all are doing well!

And , if you've had patience to read this far, you've come to the

right place for talk and encouragement and getting questions answered. This

is one loving group of fantastic people!

Old

Wherever there is a human being there is an opportunity for

kindness.

Re: Reading all posts.

Hello to Everyone,

I'm brand new here and taking up the suggestion from this very nice

person that suggested we all just jump in and talk to one another.

About 3 years ago I was diagnosed with End Stage Liver Disease

(ESLD). There was no reason for me having it. Much later, I was

diagnosed with primary biliary cirrhosis (immune system destroys the

bile ducts in liver)which can eventually lead to cirrhosis. Whatever

the cause, cirrhosis is cirrhosis, and it pretty much acts the same

with everyone no matter what the cause. I was told I had to get a

transplant if I wanted to live.

I went for my evaluation and was accepted to be listed. My MELD

score at that time was 12. After about one and a half years, my MELD

rose to 15. I was called 3 times for transplant before I finally got

my new liver. I had prepared myself for possible transplant as much

as possible. The day before my transplant I had rode my bicycle on a

mountain trail for 7 miles. I was 47 years old which is young enough

to help during a surgery. I had no other diseases or medical

conditions except my liver failure. I thought I was ready.

The surgery took about 10 hours. I was in the hospital for a little

over 2 months. Six weeks were spent in Transplant ICU. I was on a

ventilator and weaned off after about 5 weeks. I was in a drug

induced coma for the first 3 weeks. If a person can't breathe well

enough on their own after 7 days on a vent, they give you a trach

since the vent is too hard on your throat. I had that for about 6

weeks which is really quite miserable. Having a trach was the worst

part of it. Didn't eat or drink anything by mouth for 6 weeks and

had a feeding tube. I was never hungry though. I never had any pain

from the actual transplant since I was out of it for 3 weeks.

Remembered having sutures vaguely, but woke up one time and they were

gone. They pretty much kept me tied down in bed for the first

month. So I couldn't eat, drink, move, or even talk (trach prevents

it) for at least the first month. I was so happy when they gave me a

talker valve for my trach. It was really odd that I could not even

write anything during that time. I tried really hard, but my hand

would not work right, so it was very difficult to communicate.

Eventually all the tubes came out one by one. After lying around for

6 weeks in bed, I lost all my ability to walk. Could not even stand

on my own. Had to go through weeks of intensive physical therapy

just to be able to get around a little. It was a far cry from 6

weeks earlier when I was riding my bike through the mountains

alongside the river. Muscles waste so fast when you don't use them.

When I got to the point of being able to pull myself up just one

step, I knew I was going to be OK.

So I came home and continued to improve. But it wasn't over yet.

Turns out the vent and trach caused extensive scarring in my throat.

So had to deal with that problem for about a year. I had 80% airway

blockage from scar tissue. Had to sleep sitting up if I could sleep

at all. Took short cat naps out of exhaustion most of the time.

They put a stent in, then took it out. Finally I decided to get some

risky surgery since I could not stand to live that way anymore and

wanted no part of a permanent trach. Two thoracic surgeons removed a

section of my trachea. The surgery was 4 hours long. I had to get

my chin sutured to my chest for 11 days in the hospital. It was very

painful, but the most important thing is that it worked and fixed the

problem. I can breathe again and no trach ever and no more breathing

machines. Amen to that! I just have a large scar across my throat

that looks like someone cut it, but it's a small price to pay for

being able to breathe again.

So my transplant was really a tough time for me. I used to tell

people it's not a surgery for wimps. I don't want to scare anyone

since the success rate is really excellent and that is the most

important fact for anyone facing this surgery to understand. I don't

care how tough I had it for those 2 months or even the year. It

means nothing in the long run of saving my life. A lot of people

don't have nearly as hard a time as mine was. I have seen and heard

from a lot of people that were much sicker than me with other medical

conditions along with their liver disease go through a liver

transplant in a lot less time and back on their feet much sooner than

me.

Today I am doing well. Back to riding my bike again. Working part-

time. Getting ready to plant a garden. Life is back to like it was

long before I ever became sick. No problems with any rejection.

I do like to help others with cirrhosis who have questions whenever I

can. I went through it all from ascites, varices, high ammonia

levels, paracentesis, banding, etc. So nice talking to you all.

Take care.

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

Group Email: livercirrhosissupport

web address:

http://groups.yahoo.com/group/livercirrhosissupport/