Re: Lots of ERCP's

[Guest guest]

Erwin,

Although it would seem like we would be more likely to get transplants,

I also don't think it would be fair for the medical community to judge people

based on their disease. It does upset me that the number of Hep. C patients

seem to be increasing. As that increases...our chances of getting a liver

are probably decreasing. Maybe along with raising organ donation awareness,

we should also stress the importance for " safe sex " .

Love,

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[Guest guest]

Erwin,

I appreciate what you are feeling. But sometimes, we are quick to decide

priorities for others. I work with someone who's husband has Hep C. He

doesn't know how he got it, and it doesn't respond to Interferon. I would

hope for the same chance for life for him as I would for you and I. When I

think of the alcoholic with cirrhosis, I react the same as you. My disease

is not self inflicted, I should get the liver first. But, then I start

thinking, I have a good life. Maybe the alcoholic needs the extra days to

get his life straightened up. I know where I am going when I die.

I would never turn down a liver, but it's hard to make choices on who will

live and who will die. Enclosed is a story that I really like. It's long,

but it states my thoughts better than I ever could. It's definitely worth

the read.

* * * * * * * * * *

The True Hero of the Titanic

Harper was born to a pair of solid Christian parents on May 29, 1872.

It was on the last Sunday of March 1886, when he was thirteen years old that

he received Jesus as the Lord of his life. He never knew what it was to

" sow his wild oats " . He began to preach about four years later at the ripe

old age of 17 years old by going down to the streets of his village and

pouring out his soul in earnest entreaty for men to be reconciled to God.

As Harper's life unfolded, one thing was apparent...he was consumed by

the word of God. When asked by various ministers what his doctrine

consisted of, he was known to reply " The Word of God! " After five or six

years of toiling on street corners preaching the gospel and working in the

mill during the day, Harper was taken in by Rev. E. A. of Baptist

Pioneer Mission in London, England. This set Harper free to devote his

whole time of energy to the work so dear to his heart. Soon, Harper

started his own church in September of 1896. (Now known as the Harper

Memorial Church.) This church which Harper had started with just 25

members, had grown to over 500 members when he left 13 years later. During

this time he had gotten married, but was shortly thereafter widowed.

However brief the marriage, God did bless Harper with a beautiful

little girl named Nana.

Ironically, Harper almost drowned several times during his life. When

he was two and a half years of age, he almost drowned when he fell into a

well but was resuscitated by his mother. At the age of twenty-six, he was

swept out to sea by a reverse current and barely survived, and at thirty-two

he faced death on a leaking ship in the Mediterranean. Perhaps, God used

these experiences to prepare this servant for what he faced next.......

It was the night of April 14, 1912. The RMS Titanic sailed swiftly on the

bitterly cold ocean waters heading unknowingly into the pages of history.

On board this luxurious ocean liner were many rich and famous people. At

the time of the ship's launch, it was the world's largest man-made moveable

object. At 11:40 p.m. on that fateful night, an iceberg scraped the ship's

starboard side, showering the decks with ice and ripping open six watertight

compartments. The sea poured in.

On board the ship that night was Harper and his much-beloved

six-year-old daughter Nana. According to documented reports, as soon as it

was apparent that the ship was going to sink, Harper immediately took

his daughter to a lifeboat. It is reasonable to assume that this widowed

preacher could have easily gotten on board this boat to safety; however, it

never seems to have crossed his mind. He bent down and kissed his precious

little girl; looking into her eyes he told her that she would see him again

someday. The flares going off in the dark sky above reflected the tears on

his face as he turned and headed towards the crowd of desperate humanity on

the sinking ocean liner. As the rear of the huge ship began to lurch

upwards, it was reported that Harper was seen making his way up the deck

yelling " Women, children and unsaved into the lifeboats! " It was only

minutes later that the Titanic began to rumble deep within. Most people

thought it was an explosion; actually the gargantuan ship was literally

breaking in half. At this point, many people jumped off the decks and into

the icy, dark waters below. Harper was one of these people.

That night 1528 people went into the frigid waters. Harper was seen

swimming frantically to people in the water leading them to Jesus before the

hypothermia became fatal. Mr. Harper swam up to one young Man who had

climbed up on a piece of debris. Rev. Harper asked him between breaths,

" Are you saved? " The young man replied that he was not.

Harper then tried to lead him to Christ only to have the young man who was

near shock, reply no. Harper then took off his life jacket and threw

it to the man and said " Here then, you need this more than I do... " and swam

away to other people. A few minutes later Harper swam back to the young man

and succeeded in leading him to salvation. Of the 1528 people that went

into the water that night, six were rescued by the lifeboats. One of them

was this young man on the debris. Four years later, at a survivors meeting,

this young man stood up and in tears recounted how that after Harper

had led him to Christ. Mr. Harper had tried to swim back to help other

people, yet because of the intense cold, had grown too weak to swim. His

last words before going under in the frigid waters were " Believe on the Name

of the Lord Jesus and you will be saved. "

Does Hollywood remember this man? No. Oh well, no matter. This servant of

God did what he had to do. While other people were trying to buy their way

onto the lifeboats and selfishly trying to save their own lives, Harper

gave up his life so that others could be saved.

" Greater love hath no man than this, that he lay down his life for his

friends... " Harper was truly the hero of the Titanic!

Sources for this article: " The Titanic's Last Hero " by Moody Press 1997,

Scriptures are quoted from the King Jams Bible. Climie, Harper

& Bill Guthrie from " Jesus Our Jubilee Ministries " in Dallas, Oregon

* * * * * * * * * *

> Re: Lots of ERCP's

>

> Dear Dan, Laurie, Jacquelyn, and (and everyone else of course),

>

> My feeling is that since PSC is a progressive disease with a predictable

> end

> point (i.e, the need for transplantation); and since we are more likely

> to

> suffer other serious medical problems if transplantation occurs later

> rather

> than sooner (e.g., hepatocarcinoma); and since our disease cannot be

> managed

> with medication (as Hepatitis C can be with Interferon, and Autoimmune

> Hepatitis can be with Prednisone); and since, unlike people with alcoholic

>

> cirrhosis, we have not been active agents in causing our condition [a

> moral/ethical argument, I know, so likely to be more controversial for the

>

> medical establishment or even the government], we should receive higher

> priority in receiving organs.

>

> Erwin

>

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[Guest guest]

Erwin--

I agree wholeheartedly.

Laurie

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[Guest guest]

Dan--

When I said I agreed wholeheartedly, what I was referring to is that w/the

prognosis of our disease and the known end result, people w/PSC should not

have to go through all the side effects of the diseases, all the disabling

features of it, all the pain, etc. before being placed on the tx list. A

person shouldn't have to know in advance what all they're going to have to

put up with, including being on death's bed, before having even the vaguest

chance of a liver tx. Knowing that you're going to have to go through that

and then the worry of whether or not a liver will become available in time is

something NO ONE should have to go through. Having to live with this

knowledge and deal with it for years is sometimes mission impossible.

Your story is very enlightening, though. They should do a movie on him.

Thanks for sharing it.

Laurie

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[Guest guest]

Your right on the money...Lynn

Re: Lots of ERCP's

>Dear Dan, Laurie, Jacquelyn, and (and everyone else of course),

>

>My feeling is that since PSC is a progressive disease with a predictable

end

>point (i.e, the need for transplantation); and since we are more likely to

>suffer other serious medical problems if transplantation occurs later

rather

>than sooner (e.g., hepatocarcinoma); and since our disease cannot be

managed

>with medication (as Hepatitis C can be with Interferon, and Autoimmune

>Hepatitis can be with Prednisone); and since, unlike people with alcoholic

>cirrhosis, we have not been active agents in causing our condition [a

>moral/ethical argument, I know, so likely to be more controversial for the

>medical establishment or even the government], we should receive higher

>priority in receiving organs.

>

>Erwin

>

>------------------------------------------------------------------------

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>Plus quotes, charts, news, portfolios, mutual funds, and discussion.

>All free, fast, and easy. Visit: http://clickhere./click/63

>

>

>

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> - Simplifying group communications

>

>

>

>

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[Guest guest]

Laurie,

I am only in the early stages of this disease. You know what problems I

have already, and I personally think that it gets to be unbearable. However,

I wouldn't want to have a transplant right now. I know that this disease

will only get worse, (even though it is hard for me to imagine feeling worse

than what I do right now). Even though I am having problems right now, I am

still able to work, and to lead a " normal " life. (As normal as it can get).

I know it's hard for everyone to think of, but what if we didn't make it

through transplant? I'm only 20 right now, I could probably live with this

disease for at least another 10 years before needing a transplant (that is,

if we can get the infections to stop). I would rather live those 10 years

putting up with this disease, than to not have those years at all. It broke

my heart to see what Jacquelyn went through before her transplant...and I

wouldn't wish that on anyone. I can see both sides of it, but I'm saying for

my own self..I wouldn't want to have a transplant until the time was right.

Love,

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[Guest guest]

--

I agree--I'd like to keep my liver as long as possible. On the other hand,

if there are two people listed and one liver which would work for either and

the one who is longest on the list gets it, isn't it advantageous to get

listed and be listed for awhile? Once you're listed, I know they move you up

on the list as needed, but do they move you down if you stabilize? If so, it

would seem to me a good idea to get listed sooner than later. However, as I

just told Jacquelyn, I'm not ready mentally yet to be put on the list UNLESS

my dr. finds something going on that I'm not aware of and the situation is

bleak w/o being listed. I'm so scared of one thing -- cancer. I had UC for

9 yrs and they found dysplasia throughout the colon. Now I've had PSC for

12-18 yrs and who's to say what's going on down there? That's what really

frightens me.

You take care of yourself. I know it's difficult, but since you're fighting

this infection you need to get as much rest as you can to help your body

fight it. Taking time off from work right now would be a wise decision and

your employer should realize this, esp. since you work in a nursing-type

field. I came to a conclusion awhile back and tend to forget myself once in

awhile--if I'm going to try to go as long as possible w/my own liver and not

get listed, I'm going to have to help myself and do what I can to keep things

under control.

Well, that's enough advice for one night. Take Care.

Love & Prayers,

Laurie

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[Guest guest]

Laurie,

Even though I work in the health field...they are less than

understanding when it comes to needing time off work. When I went into work

on friday, I was feeling horrible...I had been feeling horrible all day, but

decided to go ahead and try it. When I decided to go home (20 min. after I

got there) my nausea was so bad that it was coming in waves..and causing A

LOT of discomfort. When I went to the charge nurse to tell her that I needed

to go home..she gave me a lot of attitude about it, and asked why I didn't

just call in. I am beginning to wonder how much longer I will be able to

stay in nursing. My job requires me to lift a lot. It's really hard on my

body...especially when I have an infection going on. Today, I'm feeling

alright. The nausea is there..but isn't severe. My main problem today is A

LOT of pain..and a lot of tenderness in the upper right quadrant. I allowed

to take my pain pill in an hour...so hopefully that will help. I think I'll

take a nap afterwards. Hope everyone is feeling great, and sorry for

rambling on.

Love,

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[Guest guest]

--

Maybe you need to check into disability while things are flared up. A letter

from your dr. to your supervisor might be in order so she understands what's

going on and what you're up against.

You take care.

Love & Prayers,

Laurie

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[Guest guest]

Roy & Group--

After some serious thinking and reading the recent msgs., I find myself

thinking it would be better to be listed than to wait until the last minute.

Just because a person is on the list doesn't mean they will get a tx

sooner--it just means at some point. That being the case, I was a status 7

in '87 when I was then told I'd need one. I'm beginning to think that PSC

patients should be listed early so that the true picture is out there--just

how many people need one or will be needing one. If the public were to see

the astronomical figures, it might change the # of donors. Even if it

changes one person's mind to donating who before wouldn't have, it's worth

it. Just my 2 cents.

I'm going to seriously ask my GI dr when I'm there 6/8 about being listed.

Esp. now knowing that if improvements occur, you can be adjusted on the list

accordingly. I guess I was afraid I'd end up w/a tx sooner than what I

needed if I was listed. Now I see that isn't the case.

Laurie

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[Guest guest]

Laurie,

I really don't want to go on disability. I have always said that I

don't let this disease run my life, that I lead a normal life. If I give in,

and go on disability..it will be letting the disease beat me. Hopefully the

infection will go away very soon, and I will be able to resume my normal

activities. Hope you are feeling great!

Love,

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[Guest guest]

my dear,

I am so sorry that you are suffering so much!! and I have

been praying for you every night!!! You will be well one of these days!! Just

focus on the LIGHT!!! That's what my dear pastor friend that recently passed

away used to always say. He would say, " Refuse to embrace the darkness!!! "

I don't know what else to tell you except please please BUG your doctors to

death. Make them do SOMETHING!!! They have the ability and that's what we

pay them millions of dollars for!!

Take care sweet heart and keep that sweet spirit!!

I love you,

Jacquelyn

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[Guest guest]

Dear ,

I agree with Russ. Disability probably saved my life. There was NO

way I could work with PSC as bad as it was. I missed 22 days from work at

the bank in 6 months. At this point I decided to consider disability and

after having I knew I had no choice.

Take care!! Feel Better and Keep your chin up!!

Love ya,

Jacquelyn

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