Heyyyyy

October 15, 2008

Oh my wonderful dear {{{{{HUGS}}}}} These problems may have an

answer I know I was denied to be put on the list because my MELD

Score was to low. At that time I was a MELD 11. What is your MELD

Score?

SSDI & Medicare absolutely are available to you!!!! My Doctors at

Mayo Clinic were old hands at filling out the paper work correctly

plus I got the most compassionate SSDI person who actually cried with

me when she asked how my life had changed. She was whispering certain

things I needed to do if I was denied but did say all she needed to

hear was ESLD and I would be approved. I was approved in 3 months but

did not get my first check until 5 months had gone by without me

working. I will not be eligible for Medicare until I have received 24

checks. They should have a financial advisor to do the paper work and

of course you must fill out your end correctly as well. I don't need

the medicare now but I must plan for the future. Mayo's Financial

Advisor Vicky, told me to make sure I did not sign up for anything

until they had reviewed it.

I begged for treatment from Mayo from day one and it was always no.

Then it was maybe and then the board reviewed my case and approved me

for Tx 6 months later as long as I CLEARLY understood that it could

kill me or any number of other serious adverse reactions. I just got

a note asking if I would like to be a part of a scientific study at

Mayo I said I would be proud to help others in my situation so I

am doing that. Its nice to give back eh

As far as the $6,000.00....thats a piece of cake. Are you well known

in the neighborhood? If so make up donation jars, have a party for

the community to raise funds. They have a great website on exactly

how to do that.

If you want something bad enough YOU CAN accomplish it

{{{{{HUGS AGAIN}}}}}

I am starting to care so much about you and I have never even

met you. I feel like I've known you for years.

{{{{{{{HUGS AGAIN}}}}}

>

> Deb, Well I go to the liver Dr next Thursday. I am trying to find

all the papers I wrote ???'s down on or write down new ones would

probably be better. I see primary Dr this Friday. Routine bloodwork

etc. also have to get flu and pneumonia shots. I know one ?? I want

to ask Hep dr is why I was told I would be on TP list and then

receive letter saying no

> Have actully been feeling really crappy lately. aches and more

aches and dragging with no energy. I am sure between the ESLD and the

Hep C its something up.Maybe I got touch of flu, who knows with 2

boys still in school. there have been 3 people in this very small

town I live in be told in the last couple months that they only have

6mos to 1 yr to live (2 w/cancer and 1 w/ ESLD Hep C. The 2 cancer

patients died within this last week. I don't know, when I was first

told about having the dragon and esld, the Dr who told me told me to

get my affairs in order and do it quick. I was floored because of

course didn't know I was sick until I had my gall bladder taken out

and they found that disorder through bloodwork and the ultrasound.

Well my approx 2 month pity party later I flat out decided I wasn't

going that easy. The dragon wants a fight , he's got one!!

> I guess the main question I should ask hep dr is if they are going

to do treatment. I know they mentioned the possibility at tp eval.

But then they said I would be on the list aaagghh!

> The reason behind the denial was my finance situation on coming up

with approx $6000 for after tp for temp housing and food. Also I am

on medicaid and they want me to get medicare. I'm 52 and on SSI and

have been denied twice due to they don't put you on medicare for esld

or hep c.

> Anyways I hope you enjoy the pics I put in our files. I hate pics

of me except when I was a teenager..LOL

> Hope all is well and keep in touch everyone. You guys are my rock

>

> Newton in Nevada

> 'Be kinder than necessary

> because everyone you meet is fighting

> some kind of battle.

October 15, 2008

, Thanks for the kind words. Its really nice to hear them sometimes especially when you are so confused and feel like sh^%%t.My MELD score last month went down from 18 to a 9, how or why I don't know but my ammonia levels were up to 54 from 22 the months before.You are very brave and strong to take on a trial treatment. I have been worrying about the tx if they decide to give it to me let alone a trial, but in the long run I think I would too if it could help somebody in the future.I feel so lucky to have found you and this group of wonderful people. To be able to let things out and have you know what I am talking about makes such a big difference. I go to AA on Tuesday evenings. Been sober since August 23, 2007...a little over a year now. At first with going there I thought I was wasting my time and it was

somewhat embarrassing to be face to face with them, but now I don't know what I would do without them, i also quit smoking on July 2nd ...3 months ago, that was really hard, in fact the hardest thing I have ever done.So , where are you from? I live in a small town called Overton (where just about everybody knows everybody) just 45 miles north of Las Vegas. In fact where is everyone from? I know Suzie is in Canada somewhere but that is all I remember.I have done fundraising before when I worked for a small nonprofit family resource center here in town. Any suggestions for fundraising?? Remember small town.Val, I am on SSI. I did not qualify for SSDI because I did not have enough hours in. When my husbans and I owned our own mechanic shop, we were struggling and didn't pay into SS. Should of known it would come back and kick me in the ass. I was told twice that I did not qualify for medicare because of ESLD and/or Hep C.

They said I would qualify if i had ESRD. So I guess when my kidneys fail, I will qualify. But no worries, I am applying again. I want you Val as well as everyone to know that you are all in my prayers and want to thank you all for having me as a friend in this site in Nevada'Be kinder than necessary because everyone you meet is fighting some kind of battle. Subject: Re: Heyyyyy To: HepatitisCSupportGroupForDummies Date: Wednesday, October 15, 2008, 5:10 PM

Oh my wonderful dear {{{{{HUGS}}} }} These problems may have an