Re: Update on Hubby... Jill

[Guest guest]

Thanks, Jill! (You might regret givng me your numbers! LOL Like I said to Barby

- I'm a talker! Ha ha)

 

But like I sadi on FB - I'm SO glad it's working for you!! Whoop whoop!

Ker

From: Jill <jillkstewart@ yahoo.com>

Subject: Re: Update on Hubby... (Long, but gotta get

it all out...)

To: livercirrhosissuppo rtyahoogroups (DOT) com

Date: Wednesday, February 24, 2010, 9:05 PM

 

Oh Kerri,Kerri. ..I am so sorry. Do you feel like you're sitting there in the

docs office and   suddenly realize. " oh my gosh..he's talking about us " . It's

like you are looking down on you and your hubby and can hear everything the doc

is saying,but you don't feel like you're in your body and then it hits you that

he''s really talking about your hubby's life here.  I do think that's it' so

important that you go to Disney and make memories! Odds are he will get his

transplant and be fine...But like you,I am intent on making good memories...and

we have not reached to part of the journey you are on yet......but you never

know..it could happen tomorrow.  You know we are here for you...anytime you

need to talk...we will listen.. I feel so awful for you. I'm giving you a big

hug!!

                                       

                                    Love,Jill

 

We don't remember days, we remember moments.

Life is not measured by the breaths we take,but by the moments that take our

breath away.

____________ _________ _________ __

From: Kerri <kerriazscraps@ yahoo.com>

To: Liver C Support <livercirrhosissupp o rtyahoogroups (DOT) com>

Sent: Wed, February 24, 2010 8:55:56 PM

Subject: Update on Hubby... (Long, but gotta get it

all out...)

 

had a colonoscopy last week. Thankfully it was clear - no hemorrhoids.

 

But...

 

We went in to the Liver Disease Center appt today. I don't even know where to

begin. I can't wrap my head around any of this at all... My thoughts are all

jumbled and I go back and forth between crying and just sitting starign into

space and not really comprehending what's going on around me... So forgive my

lack or grammar or prooper paragraph/sentence structure... I will kind of beak

it up so that it isn't one long run on paragraph so that it's easier to read.

 

Um.... Okay. So  is getting worse - fast. His liver enzymes are way

elevated and they keep rising. Both his AST and ALT  " into the latter 400s "

(She didn't give me an exact numer). He has a new prescription that he has to

take - can't recall the name of it (and the pharmacy was out so I have to wait

til tomorrow to pick it up), not that it matters! LOL - because he has a

blockage in his bile ducts and he has gallstones and this is suuposed to help

break all those down. He has to go in for an MRI on Friday to see just how big

the blockage is to see if they might need to increase that new med.

 

Then,  asked her if it would be okay for us to go to Disneyland (basically

if it would be okay for him to ride the rides). She asked when were we thinking.

told her that we didn't know for sure, but within the next few months, if

we even go. (Since we really SHOULD be putting the money towards bills! LOL)

Then she said, " The one in Cali, right? " We said " yes " . She said, " Before June? "

We timidly said " yeah, we were thinking May. " She said, It was fine, but we

really should go before June. We looked at each other.... Huh? She said that

things are progressing and after June or July he might not feel up to it, but

when we go, make sure he takes PLENTY of water and NO eating park food as there

would be WAY too much sodium in it.

 

She also confirmed that, seeing how young he is (he'll be 37 in June) and how

bad this all is, he more than likely DID get the Hep C when he had heart surgery

when he as 4 and had a blood transfusion - as in '77 they didn't check for Hep

C... Although, of course, they can never prove it.

 

Then she dropped another bomb. Insurance was not yet approving for things to go

forward for the transplant. Why? There is a $250,000 lifetime cap on what his

insurance will pay for any one individual. Well, he already has quite the rack

up of medical bills, as I'm sure you all know. We don't know what dollar amount

he is at at the moment. The hospital is working on getting at least the

preliminary approval to get him the testing to get him on the list. That is the

foremost thing. HOW IN THE FLIPPIN' HECK do you pay for a transplant with how

much it all costs??????? ? She said that they have a specific department that

handles JUST fund raisers to help families to pay for the costs.... But in these

economic times, how many people can you really get to donate? Also, he will

never be able to get insurance again, so how in the heck do we pay for the meds

he's gonna need?

 

Then asked her - said he just had to know - what he was looking at time

frame-wise if he doesn't get a transplant.. . She grimly said, " Less than 3

years. "  

 

This is all just blowing my mind! WHY US?

 

I'm putting the kids to bes early and I'm just going to bury my head and try to

sleep and not have to think anymore!

 

We, for sure now, are going to go on a famiy trip - whether to Disney or where.

We seriously need to get a vacation, something fun, where we can get our minds

off of as much as we can and just enjoy each other as a family and make some

memories... In case. (I hate to think that way, but, well, I'm jus tnot in a

very positive mood right now.)

 

I cna't think anymore. I just dont have any more words....... ......... .

[Guest guest]

Uh oh !!!...no,just kidding...use it anytime...LOL!!

 

                                       

                                    Love,Jill

 

We don't remember days, we remember moments.

Life is not measured by the breaths we take,but by the moments that take our

breath away.

________________________________

To: livercirrhosissupport

Sent: Thu, February 25, 2010 9:06:29 PM

Subject: Re: Update on Hubby... Jill

 

Thanks, Jill! (You might regret givng me your numbers! LOL Like I said to Barby

- I'm a talker! Ha ha)

 

But like I sadi on FB - I'm SO glad it's working for you!! Whoop whoop!

Ker

From: Jill <jillkstewart@ yahoo.com>

Subject: Re: Update on Hubby... (Long, but gotta get

it all out...)

To: livercirrhosissuppo rtyahoogroups (DOT) com

Date: Wednesday, February 24, 2010, 9:05 PM

 

Oh Kerri,Kerri. ..I am so sorry. Do you feel like you're sitting there in the

docs office and   suddenly realize. " oh my gosh..he's talking about us " . It's

like you are looking down on you and your hubby and can hear everything the doc

is saying,but you don't feel like you're in your body and then it hits you that

he''s really talking about your hubby's life here.  I do think that's it' so

important that you go to Disney and make memories! Odds are he will get his

transplant and be fine...But like you,I am intent on making good memories...and

we have not reached to part of the journey you are on yet......but you never

know..it could happen tomorrow.  You know we are here for you...anytime you

need to talk...we will listen.. I feel so awful for you. I'm giving you a big

hug!!

                                       

                                    Love,Jill

 

We don't remember days, we remember moments.

Life is not measured by the breaths we take,but by the moments that take our

breath away.

____________ _________ _________ __

From: Kerri <kerriazscraps@ yahoo.com>

To: Liver C Support <livercirrhosissupp o rtyahoogroups (DOT) com>

Sent: Wed, February 24, 2010 8:55:56 PM

Subject: Update on Hubby... (Long, but gotta get it

all out...)

 

had a colonoscopy last week. Thankfully it was clear - no hemorrhoids.

 

But...

 

We went in to the Liver Disease Center appt today. I don't even know where to

begin. I can't wrap my head around any of this at all... My thoughts are all

jumbled and I go back and forth between crying and just sitting starign into

space and not really comprehending what's going on around me... So forgive my

lack or grammar or prooper paragraph/sentence structure... I will kind of beak

it up so that it isn't one long run on paragraph so that it's easier to read.

 

Um.... Okay. So  is getting worse - fast. His liver enzymes are way

elevated and they keep rising. Both his AST and ALT  " into the latter 400s "

(She didn't give me an exact numer). He has a new prescription that he has to

take - can't recall the name of it (and the pharmacy was out so I have to wait

til tomorrow to pick it up), not that it matters! LOL - because he has a

blockage in his bile ducts and he has gallstones and this is suuposed to help

break all those down. He has to go in for an MRI on Friday to see just how big

the blockage is to see if they might need to increase that new med.

 

Then,  asked her if it would be okay for us to go to Disneyland (basically

if it would be okay for him to ride the rides). She asked when were we thinking.

told her that we didn't know for sure, but within the next few months, if

we even go. (Since we really SHOULD be putting the money towards bills! LOL)

Then she said, " The one in Cali, right? " We said " yes " . She said, " Before June? "

We timidly said " yeah, we were thinking May. " She said, It was fine, but we

really should go before June. We looked at each other.... Huh? She said that

things are progressing and after June or July he might not feel up to it, but

when we go, make sure he takes PLENTY of water and NO eating park food as there

would be WAY too much sodium in it.

 

She also confirmed that, seeing how young he is (he'll be 37 in June) and how

bad this all is, he more than likely DID get the Hep C when he had heart surgery

when he as 4 and had a blood transfusion - as in '77 they didn't check for Hep

C... Although, of course, they can never prove it.

 

Then she dropped another bomb. Insurance was not yet approving for things to go

forward for the transplant. Why? There is a $250,000 lifetime cap on what his

insurance will pay for any one individual. Well, he already has quite the rack

up of medical bills, as I'm sure you all know. We don't know what dollar amount

he is at at the moment. The hospital is working on getting at least the

preliminary approval to get him the testing to get him on the list. That is the

foremost thing. HOW IN THE FLIPPIN' HECK do you pay for a transplant with how

much it all costs??????? ? She said that they have a specific department that

handles JUST fund raisers to help families to pay for the costs.... But in these

economic times, how many people can you really get to donate? Also, he will

never be able to get insurance again, so how in the heck do we pay for the meds

he's gonna need?

 

Then asked her - said he just had to know - what he was looking at time

frame-wise if he doesn't get a transplant.. . She grimly said, " Less than 3

years. "  

 

This is all just blowing my mind! WHY US?

 

I'm putting the kids to bes early and I'm just going to bury my head and try to

sleep and not have to think anymore!

 

We, for sure now, are going to go on a famiy trip - whether to Disney or where.

We seriously need to get a vacation, something fun, where we can get our minds

off of as much as we can and just enjoy each other as a family and make some

memories... In case. (I hate to think that way, but, well, I'm jus tnot in a

very positive mood right now.)

 

I cna't think anymore. I just dont have any more words....... ......... .