WHAT IS THIS TEST LIKE

[Guest guest]

Martha- You're going right to the top of my prayer list tonight!!! You've been so wonderful to me with your support & answering all my ???'s. Good luck/keep us posted. Thanks. Kath

What is this test like

Went to my GI today as I had been having increased itching, nausea, chills and increased fatigue. He thinks wise to do a MRCP, which is much like a MRI, he says might be a blockage of a bile duct he says it will examine the pancreas also. Just wondering if anyone out there found anything out if they ever had this test. I said do you think this is the progress of the disease and he said "maybe". They can't give definite answers because they don't know I guess, everyone is different. Will have this Wed. of this week and then go back to him for a report Fri. My Alk Phos had gone up from 211 to 550 in about 6 wks. I didn't get a copy of it today but will Fri. Will let you know how things turn out. Wish me luck and keep me in your prayers. Do you ever ask yourself how much of this we will have to go through before God comes to say its time to leave this earth. I guess I have been a little down lately. Martha from Mo.

[Guest guest]

Martha, there is really nothing to it. I was really scared as I was told you shouldn't have an MRI if you had any joint replacements, but they showed me a video that said it was safe after hip replacements. It was only after having my MRI that I got my confirmed diagnosis of PSC. Showed a lot of scarring on my bile ducts. Good luck. My prayers are with you.

Love, Leona

[Guest guest]

A post from Aubrey last year:

An MRCP is a non-invasive test to look at your bile ducts using an MRI machine and fine "slices" or pictures. Because there is no injection of dye into your bile ducts and pancreas there is no risk of pancreatitis. This test is not done everywhere so you may still need to have an ERCP. I would suggest that you be given prophylactic antibiotics prior to any second ERCP. Talk to the doctor doing the scope before your appointment date and tell him/her that you won't have the procedure without prophylactic coverage.

Aubrey

Arne50 - UC 1977 - PSC 2000Alive and (mostly) well in Minnesota

-----Original Message-----From: MMyers5118@... Went to my GI today as I had been having increased itching, nausea, chills and increased fatigue. He thinks wise to do a MRCP, which is much like a MRI, he says might be a blockage of a bile duct he says it will examine the pancreas also. Just wondering if anyone out there found anything out if they ever had this test.

[Guest guest]

Baudoux-Northrup wrote:

>

> Your dumpy moods is also just a regular part of this

> or any other life threatening disease. These last few

> days I have been thinking about liver transplants and

> dying alot. I may get alot of negative feedback for

> what I am going to say, ..... So....I am

> thinking, and I know it is premature, I don't want a

> liver transplant.

Dear ,

As I read your letter, the tears began to flow. I have been struggling

for a week on this exact same point!! And I had come to very much the

same conclusions you have. After 20 years of struggling through severe

chronic illness, I can't even begin to consider the massive, heart and

soul, fight required for a liver transplant. This decision is a

frightening one, more so because I can't begin to conceive of all the

ramifications on down the road. This past spring, for no apparent

reason other than God's incredible grace, I emerged from many years of

severe depression and am terrified of doing anything which could send me

back to that bleakness. Even if the transplant worked beautifully, I

still have Crohn's, severe fibromyalgia, GERD, duodenal ulcers, and mild

asthma. Quality of life, at best, would be little improvement over the

present.

A couple of years ago there was an item on the evening news about a

woman who was 105 years old. My hubby remarked how wonderful that would

be and was stunned when I vehemently disagreed. He asked why I felt as

I did and I replied, " Think about it, darling. Would you really want me

to spend another 60 years of being this sick? " We both wept and clung

to each other for a long while that evening.

Much of my thinking, too, has stemmed from my father's illness. My Dad

is in stage IV lung cancer, is a walking skeleton, and gets noticeably

weaker every week. When we learned of his illness this past July (and

he was already stage IV then, with severe emphysema, cardiac problems,

and circulatory problems) it was a horrible blow. However, my dear,

dear Papa immediately made it clear that he wanted no treatments at all.

He stated firmly that he had lived his allotted threescore and ten, and

had enjoyed 8 more years beyond that (he's 78); he had had a good life

and was quite content with that. The dignity and courage with which he

has faced this has overwhelmed, inspired and uplifted me and given me

the courage to face this liver disease which was just diagnosed a few

months ago, yet already so advanced.

My Papa is a tall, slender, distinguished-looking old Southern

gentleman. All my life I've never seen him in anything but a suit,

white shirt, bowtie, and hat (straw boater in the summer and black

homburg in the winter). He was principal electrical engineer for

Fluor-; he's an incredible history buff and loves to quote poetry

(no, actually, he doesn't merely quote; he declaims in finest oratory

tradition!). For years, whenever the subject of death came up, he would

always quote one particular piece (which will also be read at his

funeral): the Epilogue from " Thanatopsis " by Cullen . I

share it now with you:

" So live, that when thy summons comes to join

The innumerable caravan, which moves

To that mysterious realm, where each shall take

His chamber in the silent halls of death,

Thou go not, like the quarry-slave at night,

Scourged to his dungeon, but, sustained and soothed

By an unfaltering trust, approach thy grave,

Like one who wraps the drapery of his couch

About him, and lies down to pleasant dreams. "

My husband and I both feel that the most important thing we can do at

this point is to make the best of my good days and enjoy every minute we

can of them. In other words -- Carpe Diem!!! (We call the bad days

" crappy diems! " )

My decision has been an agonizing one to make, yet once made it brought

great relief and a sense of peace which I've not had for quite a long

time. Yes, I may change my mind farther down the road, but somehow I

don't think I will. That unfaltering trust in God is a great comfort

and definitely sustains us through this rocky road.

Regards,

Carolyn in SC

[Guest guest]

Carolyn, I am normally not like that post. Barb in

Texas will attest to that, but I was thinking those

thoughts and felt compelled to share them today...and

perhaps there was a reason.

I do have a picture of my dad, and I can see it

peeking over the top of my computer. He is standing

at the back of a beat up pickup truck, shoveling wood

chips out of it onto a roadway he made for a sporting

clays course at the gun club. I guess he was about

72-75 in that picture. He retired from his job in

1984, but never quit working. He wasn't happy unless

he was busy puttering around doing something. The day

he died, he was visiting with his brother, had dinner

with me, and putzed around his woodshop. That is how

I envision my life's end, putzing around doing what I

like to do, minding my own business....not being kept

awake by beeping machines, endless visitors who never

had the balls to visit me while I was healthy, but now

feel compelled out of a sense of morbid curiosity, not

to mention the mood swings.....oh here I go again.

My family seems to be overwhelmed with health issues

that take our lives early, 42, 48 50, and I am 44. I

remember the year I turned 42 it was a very black time

because I kept remembering my brother didn't make it

past 42. Now I am past it and now I have PSC.

I am usually have a very positive outlook on life, so

all I can guess is that my story today is to say, try

to be positive, but if you get down in the dumps, have

one hell of a pity party, then wipe away the tears,

and go about living your life.

My pity parties used to be frequent, it was hard to

get into the living mode, because it felt like this

giant anvil was over my head hanging by a thread...but

with this group, I find, I can share those morbid

thoughts without freaking my family out. My sister,

my husband and my son are incapble of making rational

decisions when someone is in critical condition or

medical decisions need to be made quickly. My

daughter is the only person that I feel will respect

my wishes...and she knows that they are subject to change.

=====

in Michigan (Dx UC 1984, Dx MISSING COLON 1999, Dx PSC 1997, PSC symptoms

2000)

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