App'ts. in Denver

[Guest guest]

Hi everyone,

I just got back from appointments with the transplant team at Porter Care

Hospital in Denver. My dr. here in Billings thought maybe it was time to do

that again. I'd been there 2 years ago and they said I was then 2-5 years

from being listed. This time Dr. Bilir, the hepatologist, said I should

probably be listed now since the wait time has increased from about 1 year to

2-2 and a half years! He was VERY impressed by how intelligent and

knowledgeable I am about the disease, treatments, etc! I told him it was all

from this support group! He thought that was wonderful! (yea! Us!) I

learned more from him and also Dr. Kortz who is the main liver transplant

surgeon. I have to digest it all. I had my husband, Jim, and our daughter,

Lara, with me. She lives in Colorado Springs and works for Focus on the

Family there. She's an associate producer of Family News in Focus, a 3-5

min. news analysis program. I guess that's kind of off-track, but we are

very proud of her!!

Anyway I was glad to have them both there because I'd never remember

everything the drs. said. Six ears are better than 2! I was a little

surprised they wanted to list me already. I read what so many of you are

going through with fevers, chills, strictures, infections, etc., and I

haven't had much of that at all. But they want to get the process started so

there won't be a chance of waiting too long with the longer wait times. I

was glad but like someone said recently, it makes it seem more real and

imminent when you're actually on a list. As long as I could say, Oh I'm not

sick enough to be on a list yet, I could almost fool myself into thinking I'm

going to be O.K. for a long time. This makes it seem more real. Dr. Bilir

explained that the URQ pain is mainly from stricture in the ducts. I didn't

know what it was, just that it " goes along with the disease. " He said I

should pay attention and see if I have a low-grade fever when I have that

pain. I'd never thought of it. Anyway it was all very interesting and we

all have a lot of confidence in the drs. there. They, as well as the

dietitian and social worker took so much time with us and made us feel so

comfortable like we could trust our lives with them -- which is exactly what

I'll be doing! They talked about finances. I was shocked to learn that the

medications after tx would be about $15,000 a year! So we talked about my

insurance and they assured me they would talk to the insurance companies,

both mine and Jim's, to be sure what will be covered. We talked about

transportation from here to Denver. It's a 9 hr. drive so we need to come up

with plan A, and plan B, as well as a plan C!! Jim does have a couple of

friends who are pilots and have told him they'd be glad to take us down there

when the time comes. So we need to keep up with them.

Well, this is much longer than my usual posts, but I just wanted to tell you

where I'm at now. Oh, Dr. Bilir did ssy they lost a patient the day before I

was there because she wasn't referred to them in time. That was scary and I

was glad he decided I should be listed soon.

Take care,

Peggy McG

[Guest guest]

Hi

I knew Dr. Bilir when he was a Fellow at University Hospital. He was great

(and quite handsome LOL!) Assuming it's the same Doc. He trained under my

Hepatologist at Univ. Hospital (Dr. Greg Everson)

Hope things go well with you.

Take Care,

Dianne A.

[Guest guest]

Dianne,

Yes he IS quite handsome!! I don't remember where he's from, what country, I

mean. I met w/ his wife 2 yrs. ago when I was down there. She's cute too.

Looks way too young to be a dr!!

Peggy McG

[Guest guest]

Peg McG,

Glad to hear you aren't feeling bad and that they have decided to put you on

the list. I too don't have any major problems at this time either but I am

sure it is just a matter of time before I start getting the same symptons as

others.

I too have learned so much from all of you and the kinda of things to expect

in the future. Hopefully, I will be able to deal with all the problems when

they do hit. I know I am well informed because of the group.

Tell you daughter that I listen to Focus On The Family just about everyday. I

like Dr. Dobson's program. Tell her to keep up the good work.

Larry

[Guest guest]

Peggy--

I have mixed emotions, too, about your being listed - or anyone being listed

before they feel they should be BUT I am glad your dr. is doing it for the

reason he is doing it. Mine won't. It sounds like they covered a lot of

areas with you including prescrips., etc. and Plans A, B & C to get to

Denver. I'm sure you are more nervous about this now than you would have

been had they not listed you, but just keep reminding yourself of what the

dr. said -- that they lost a patient because he/she was referred too late.

It's good to know there ARE drs out there who do take that into

consideration. I'll remind mine again when I go in Oct.

Take care. My thoughts & prayers are w/you,

Laurie

[Guest guest]

Peg,

It's good that you got listed. Also nice that the docs

recognized your knowledge about disease, treatments, etc. I

think that when they know that you are informed and have taken

the time to understand what's going on, the docs are eager to

share what they know and get feed back from you on your

experience. What is known about PSC is so limited that informed

observations from a patient can be very important to docs.

> I just got back from appointments with the transplant team at

> Porter Care Hospital in Denver. ... Dr. Bilir, the

> hepatologist, said I should

> probably be listed now ... He was VERY impressed by how

> intelligent and

> knowledgeable I am about the disease, treatments, etc!...

> learned more from him and also Dr. Kortz who is the main liver

> transplant surgeon.

I think it is very wise to take along some other listeners, who

can remind you of questions you forget to ask (take a written

list!) or think of one that may slip by you at the time in

addition to being witnesses to all the information being given

out so you can collectively remember it.

> I had my husband, Jim, and our daughter,

> Lara, with me. ...

> Anyway I was glad to have them both there because I'd never

> remember

> everything the drs. said. Six ears are better than 2!

I rmember when I was first diagnosed with PSC my doc said I'd

eventually need a liver transplant. My reaction was disbelief.

Even after getting listed I didn't want to believe it would

really come to that. Going through a long period of stable LFTs

helped me maintain denial. But after a false call rehearsal

(which I hope you and your pilot friends don't have to go

through), I was thoroughly ready when the ultimate call finially

came.

Tim

> I was a little

> surprised they wanted to list me already. I read what so many

> of you are

> going through with fevers, chills, strictures, infections,

> etc., and I

> haven't had much of that at all. But they want to get the

> process started so

> there won't be a chance of waiting too long with the longer

> wait times. I

> was glad but like someone said recently, it makes it seem more

> real and

> imminent when you're actually on a list. As long as I could

> say, Oh I'm not

> sick enough to be on a list yet, I could almost fool myself

> into thinking I'm

> going to be O.K. for a long time. This makes it seem more

> real.

_____________________________________________________________

[Guest guest]

Dear Peggy McG,

Hello, it's Jacquelyn!!! I just wanted to let you know that I will be

praying for you and after the ordeal that we went through and the possibility

of my not receiving the liver in time...I have to agree with your doctor. I

know it's scary...I was sooo scared at first, but one thing my wonderful

husband said that helped me so much was... " Jacquelyn it's very easy to get

off of the list if you get better, but we are blessed that you could get ON

the list at all. " Hope that made sense!! I've taken my nighttime meds and am

getting pretty sleepy!! Anyway, he was saying that getting off of the list is

easy...it's getting on that's the hassle.

Please take care and God Bless,

Jacquelyn

[Guest guest]

Hi Laurie!

Here you are again -- ALWAYS helping anyone of us out when we are in the

direst of needs!! You are a great person and I do hope you know how many you

have helped as long as you have been on the site -- or did you help start

this site? If not, thank God you are on it.

You are so right, I wish I had a doc like Peggy has. Through all of this

pain and suffering for 3 years, my doc won't even consider me for a Tx --

although I have always said I don't know if I would take it or not.

Even on this site, we have 3 (maybe more) very young children who

haven't had a chance to live. We have a lot of people in their teens and

twenties! As you know, I am 56-years-old and I just could not accept a liver

if it would take away from any of these young people. I truly am not afraid

to die -- it would be such a blessing and I know that God will finally give

me peace and relief from suffering. And as I have said many, many times, I

have NEVER said why me -- I ALWAYS say why NOT me?

Laurie, I do not mean to take anything away from Peggy but while I am

here and before I forget it I just have to know if anyone on this site has

or is suffering from this horrible stomach pain -- it is dull and hurts like

the devil. This started really, really continuously about 5 months ago along

with nausea and dizziness. I also fall fairly frequently. I do have a cane

and a wheelchair (the chair only when I can go to a mall or festival -- I

cannot walk and have not been able to walk far since all this began 3 years

ago.)

However I want to know about the stomach pain -- the upper right side

pain is still there.

I look back and I think I have had this devil disease for at least 11

years.

Thank you for everything and I know Peggy relies on you also. I want

Peggy to know that I remember when she was like you -- she was always there

for any of us who had questions or just wanted to get something off our

chest!! I hope she can get back on when she gets better. Do you think she

will come back to this site? I hope so.

Thanks Laurie

Hugs, Biddy

Re: App'ts. in Denver

>Peggy--

>I have mixed emotions, too, about your being listed - or anyone being

listed

>before they feel they should be BUT I am glad your dr. is doing it for the

>reason he is doing it. Mine won't. It sounds like they covered a lot of

>areas with you including prescrips., etc. and Plans A, B & C to get to

>Denver. I'm sure you are more nervous about this now than you would have

>been had they not listed you, but just keep reminding yourself of what the

>dr. said -- that they lost a patient because he/she was referred too late.

>It's good to know there ARE drs out there who do take that into

>consideration. I'll remind mine again when I go in Oct.

>

>Take care. My thoughts & prayers are w/you,

>Laurie

>

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