Re: Hepatopulmonary Syndrome Anyone?

[Guest guest]

Sorry Lynda - I'd have to research it on the computer to even get a hint of what

that is.  Actually, it's a very very good thing that you said something to the

Dr.  Obviously it was time to have those tests again and hopefully, get you

well again.

________________________________

When I was first diagnosed 2 years ago, I was an uncompensated 17 meld score.

After the first 8 months, I dropped down to a 10 meld and compensated, which

I've been very happy with. My GI doctor said if I maintained I might not need a

liver transplant. But then I opened my big mouth and mentioned my nails had

started curving downward. Last week after what seemed like a ton of tests, it

was confirmed I have hepatopulmonary syndrome. I don't see my GI doctor again

till next month, so we will figure out where to go from there. Does anyone else

have experience with HPS?

~Lynda

[Guest guest]

hi lynda

i just noticed a couple weeks ago my some of my nail are curling down to.i will

have to check with my dr on tues.i was disgnosed with end stage cirrhossis in

oct 2008 was put on tp list dec of 2009 after lots of hosp. stays.it has taken

me 4 yrs to get my meld to a 14.i just understand this disease i feel worse the

last three mos. then i have in awhile i have weight an can't get off.i can't

take the i go to the gym and i have been trying but it just won't go away.i was

at a 23 when i was listed.

god bless

bev tx

________________________________

To: " livercirrhosissupport "

<livercirrhosissupport >

Sent: Sunday, May 13, 2012 11:14 PM

Subject: Re: Hepatopulmonary Syndrome Anyone?

 

Sorry Lynda - I'd have to research it on the computer to even get a hint of what

that is.  Actually, it's a very very good thing that you said something to the

Dr.  Obviously it was time to have those tests again and hopefully, get you

well again.

________________________________

When I was first diagnosed 2 years ago, I was an uncompensated 17 meld score.

After the first 8 months, I dropped down to a 10 meld and compensated, which

I've been very happy with. My GI doctor said if I maintained I might not need a

liver transplant. But then I opened my big mouth and mentioned my nails had

started curving downward. Last week after what seemed like a ton of tests, it

was confirmed I have hepatopulmonary syndrome. I don't see my GI doctor again

till next month, so we will figure out where to go from there. Does anyone else

have experience with HPS?

~Lynda

[Guest guest]

Bev

I had no idea that you were so very young!!  Hopefully, the powers to be are

going to put you at the top of the list soon.

I gotta tell you all.  It breaks my heart to read how sick a person gets while

waiting for a transplant.  I chose not to do any further procedures when my

cancer returned after only 15 months.  However, it's unbelievable how well I

still feel.  It's 9 months now and I just do the happy dance!!  To wake up in

the morning is the 1st thing I say thank you for.  Throughout the day, there

are numerous things that happen, but I didn't ever experience this way.  It

makes things very interesting to say the least.

Now I wonder if I'm being kept well until I finish something I'm suppose to

do.  What ever is the reason, I'm so grateful.

________________________________

 

hi lynda

i just noticed a couple weeks ago my some of my nail are curling down to.i will

have to check with my dr on tues.i was disgnosed with end stage cirrhossis in

oct 2008 was put on tp list dec of 2009 after lots of hosp. stays.it has taken

me 4 yrs to get my meld to a 14.i just understand this disease i feel worse the

last three mos. then i have in awhile i have weight an can't get off.i can't

take the i go to the gym and i have been trying but it just won't go away.i was

at a 23 when i was listed.

god bless

bev tx

________________________________

To: " livercirrhosissupport "

<livercirrhosissupport >

Sent: Sunday, May 13, 2012 11:14 PM

Subject: Re: Hepatopulmonary Syndrome Anyone?

 

Sorry Lynda - I'd have to research it on the computer to even get a hint of what

that is.  Actually, it's a very very good thing that you said something to the

Dr.  Obviously it was time to have those tests again and hopefully, get you

well again.

________________________________

When I was first diagnosed 2 years ago, I was an uncompensated 17 meld score.

After the first 8 months, I dropped down to a 10 meld and compensated, which

I've been very happy with. My GI doctor said if I maintained I might not need a

liver transplant. But then I opened my big mouth and mentioned my nails had

started curving downward. Last week after what seemed like a ton of tests, it

was confirmed I have hepatopulmonary syndrome. I don't see my GI doctor again

till next month, so we will figure out where to go from there. Does anyone else

have experience with HPS?

~Lynda

[Guest guest]

Gloria, with the combination of problems I have, there is no reason

why I should still be alive. But I am. And enjoying my life, well

most of the time. Just had 2 endoscopies about a month ago, bleeding

internally again, so suppose i will have to have both a colonoscopy

and another endoscopy soon. Waiting to hear when the info gets sent

around to all my doctors.

I too have the feelling that God is keeping me here to do something he

wants me to do, maybe just to play for church, or as an example to

others that you don't have to lay down and die because you are told

you have a disease which will eventually kill you. Jan

> Bev

>

> I had no idea that you were so very young!!  Hopefully, the powers to be are

going to put you at the top of the list soon.

>

> I gotta tell you all.  It breaks my heart to read how sick a person gets while

waiting for a transplant.  I chose not to do any further procedures when my

cancer returned after only 15 months.  However, it's unbelievable how well I

still feel.  It's 9 months now and I just do the happy dance!!  To wake up in

the morning is the 1st thing I say thank you for.  Throughout the day, there are

numerous things that happen, but I didn't ever experience this way.  It makes

things very interesting to say the least.

>

> Now I wonder if I'm being kept well until I finish something I'm suppose to

do.  What ever is the reason, I'm so grateful.

>

>

>

> ________________________________

>

>

>

>

> hi lynda

> i just noticed a couple weeks ago my some of my nail are curling down to.i

will have to check with my dr on tues.i was disgnosed with end stage cirrhossis

in oct 2008 was put on tp list dec of 2009 after lots of hosp. stays.it has

taken me 4 yrs to get my meld to a 14.i just understand this disease i feel

worse the last three mos. then i have in awhile i have weight an can't get off.i

can't take the i go to the gym and i have been trying but it just won't go

away.i was at a 23 when i was listed.

> god bless

> bev tx

>

>

> ________________________________

>

> To: " livercirrhosissupport "

<livercirrhosissupport >

> Sent: Sunday, May 13, 2012 11:14 PM

> Subject: Re: Hepatopulmonary Syndrome Anyone?

>

>

>

>

> Sorry Lynda - I'd have to research it on the computer to even get a hint of

what that is.  Actually, it's a very very good thing that you said something to

the Dr.  Obviously it was time to have those tests again and hopefully, get you

well again.

>

> ________________________________

> When I was first diagnosed 2 years ago, I was an uncompensated 17 meld score.

 After the first 8 months, I dropped down to a 10 meld and compensated, which

I've been very happy with.  My GI doctor said if I maintained I might not need a

liver transplant.  But then I opened my big mouth and mentioned my nails had

started curving downward.  Last week after what seemed like a ton of tests, it

was confirmed I have hepatopulmonary syndrome.  I don't see my GI doctor again

till next month, so we will figure out where to go from there.  Does anyone else

have experience with HPS?

>

> ~Lynda

>

>

[Guest guest]

Jan

I can't agree with you more about not lying down and giving up.  After the Hep

C tx and then the liver resection, I believed that I learned very well that life

is just too precious to be in a depression.  There will be enough time for that

later.

One thing that strikes me, is a long time friend that I've kept in touch with

over all these years.  When he was diagnosed with lung cancer, he knew to get

in touch with me about how one can handle the emotions etc.  Then, the other

day, I got an email and they have found that the lung cancer has moved to the

brain as well.  You see, I have little doubt that's what happened with my

husband.  He changed so quickly and just didn't come back.

Jim and I can get a little humor going because we both know that we will be

totally wasted on drugs before we go.  He says that he knew that drugs were

going to get him; but, he never thought they would be prescriptions.

You know, it actually hurts my heart that he's in such a state.  The radiation

hurts and leaves him sick.  I wish I could go and see him and his wife, even if

it's just to say goodbye to each other.  Then I think - him turning to me at a

time like this, is the me that I have always put out there.  People around me

know without a doubt that I will always help as long as I can.  So again, I

wonder about the husband family members that choose to believe something else. 

They must be living extremely sad lives!!  Of course, they are going to miss

all the lessons about love because of the attitudes. 

But, they have to live with it!!  Geez, I won't even be here to know when the

karma back hands them.

________________________________

 

Gloria, with the combination of problems I have, there is no reason

why I should still be alive. But I am. And enjoying my life, well

most of the time. Just had 2 endoscopies about a month ago, bleeding

internally again, so suppose i will have to have both a colonoscopy

and another endoscopy soon. Waiting to hear when the info gets sent

around to all my doctors.

I too have the feelling that God is keeping me here to do something he

wants me to do, maybe just to play for church, or as an example to

others that you don't have to lay down and die because you are told

you have a disease which will eventually kill you. Jan

> Bev

>

> I had no idea that you were so very young!!  Hopefully, the powers to be are

going to put you at the top of the list soon.

>

> I gotta tell you all.  It breaks my heart to read how sick a person gets

while waiting for a transplant.  I chose not to do any further procedures when

my cancer returned after only 15 months.  However, it's unbelievable how well I

still feel.  It's 9 months now and I just do the happy dance!!  To wake up in

the morning is the 1st thing I say thank you for.  Throughout the day, there

are numerous things that happen, but I didn't ever experience this way.  It

makes things very interesting to say the least.

>

> Now I wonder if I'm being kept well until I finish something I'm suppose to

do.  What ever is the reason, I'm so grateful.

>

>

>

> ________________________________

>

>

>

>

> hi lynda

> i just noticed a couple weeks ago my some of my nail are curling down to.i

will have to check with my dr on tues.i was disgnosed with end stage cirrhossis

in oct 2008 was put on tp list dec of 2009 after lots of hosp. stays.it has

taken me 4 yrs to get my meld to a 14.i just understand this disease i feel

worse the last three mos. then i have in awhile i have weight an can't get off.i

can't take the i go to the gym and i have been trying but it just won't go

away.i was at a 23 when i was listed.

> god bless

> bev tx

>

>

> ________________________________

>

> To: " livercirrhosissupport "

<livercirrhosissupport >

> Sent: Sunday, May 13, 2012 11:14 PM

> Subject: Re: Hepatopulmonary Syndrome Anyone?

>

>

>

>

> Sorry Lynda - I'd have to research it on the computer to even get a hint of

what that is.  Actually, it's a very very good thing that you said something to

the Dr.  Obviously it was time to have those tests again and hopefully, get you

well again.

>

> ________________________________

> When I was first diagnosed 2 years ago, I was an uncompensated 17 meld score.

 After the first 8 months, I dropped down to a 10 meld and compensated, which

I've been very happy with.  My GI doctor said if I maintained I might not need

a liver transplant.  But then I opened my big mouth and mentioned my nails had

started curving downward.  Last week after what seemed like a ton of tests, it

was confirmed I have hepatopulmonary syndrome.  I don't see my GI doctor again

till next month, so we will figure out where to go from there.  Does anyone

else have experience with HPS?

>

> ~Lynda

>

>