Re: Update on Hubby... Diane

[Guest guest]

Diane -

 

I can't tell you what this email means to me. I am printing it out and carrying

it with me! Thank you so much!

Much love!!!

 

Kerri

>

>

>

> >

> >

> > 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.................

> >

> >