Re: Informal questionnairre, TRANSPLANT

[Guest guest]

> Just trying to satisfy a curiosity.

>

> 1. How long from first suspicious symptoms until diagnosis?

>

1995-2001

> 2. How long has it been since diagnosis?

>

A little over a year

> 3. Have you had liver transplant?

>

No

> 4. How long after initial diagnosis did you get your new liver?

>

N/A

> 5. What procedures done relating to PSC?

>

2 ERCP's and a liver biopsy

> 6. How old are you?

>

Just turned 40

>

[Guest guest]

> 1. How long from first suspicious symptoms until diagnosis?

2-3 years

> 2. How long has it been since diagnosis?

11 yrs

>

> 3. Have you had liver transplant?

no

>

> 4. How long after initial diagnosis did you get your new liver?

na

>

> 5. What procedures done relating to PSC?

2 ercps, gallbladder removal, many EGDs (once every six months)

>

> 6. How old are you?

33 (as of Jan 15th!)

[Guest guest]

Just trying to satisfy a curiosity.

1. How long from first suspicious symptoms until diagnosis?

Probably 2-3 years

2. How long has it been since diagnosis?

Almost 3 years

3. Have you had liver transplant?

No

4. How long after initial diagnosis did you get your new liver?

N/A

5. What procedures done relating to PSC?

3 ERCPs (1st 2 with pancreatitis)

1st one diagnostic

2nd included sphincterectomy,

balloon dilatation & stent placement

3rd stent removal only

gallbladder removal,

ultrasound

quarterly blood labs

6. How old are you?

51 and counting

Arne

51 - UC 1977 - PSC 2000

Alive and (mostly) well in Minnesota

[Guest guest]

My Answers ( First

Time / This Time )

3 months / 3 days

21 years / 5 months

Yes / No

4 years / NA

Gallbladder removal, Choledochojejeunostomy,

scleral therapy for variceal bleeding, Needle

biopsies, Large wedge biopsy / Multiple Upper Endoscopies with banding,

Ultrasound guided left lobe biopsy, MRCP

54

Steve

Rahn

L Tx 9/6 & 9/8 '85,

Waiting for Re-Tx

" The

true measure of a man's

character

is what he would do

knowing

there was no chance of being

being

found out. " (T. Macauley)

Informal

questionnairre, TRANSPLANT

Just trying to satisfy a curiosity.

1. How long from first suspicious symptoms until

diagnosis?

2. How long has it been since diagnosis?

3. Have you had liver transplant?

4. How long after initial diagnosis did you get

your new liver?

5. What procedures done relating to PSC?

6. How old are you?

My answers:

1. 1995 until 2002

2. 6 months

3. no

4. NA (not apply)

5. ERCP bile stenting and gall bladder removal

6. 27

[Guest guest]

> Just trying to satisfy a curiosity.

>

> 1. How long from first suspicious symptoms until diagnosis?

>

> 2. How long has it been since diagnosis?

>

> 3. Have you had liver transplant?

>

> 4. How long after initial diagnosis did you get your new liver?

>

> 5. What procedures done relating to PSC?

>

> 6. How old are you?

>

>

1. 3 months

2. 18 months

3. No

4. N/A

5. 5 ERCP's. 1 Diagnostic and 4 stent thearpy. Stent kept getting

blocked so I am now stent free. 1 Liver biopsy, 2 Ultrasounds, 1 CT

Scan, 1 Bone Dexa Scan, 2 Colonoscopies and a Partridge in a Pear

Tree.

6. 32

[Guest guest]

1. How long from first suspicious symptoms until diagnosis

I didn't have any symptoms. It was found when my gallbladder was removed. Does my gallbladder turning to mush (the doctor's expression) count as a symptom? This was in May, 1995

2. How long has it been since diagnosis?

Nearly 8 years

3. Have you had liver transplant?

No

4. How long after initial diagnosis did you get your new liver

not applicable

5. What procedures done relating to PSC?

4 ERCP's, No liver biopsy! (Am I the only one who hasn't had one?)

Gallbladder removal-not sure if that counts

6. How old are you?

48

Barby

UC - age 11, ileostomy - age 17 (1972), continent ostomy - 1994

PSC - 1995

married 23 years, 5 sons ages 10-21

KS - tornado (1983) and house fire (2002) survivor

[Guest guest]

1. How long from first suspicious symptoms until diagnosis?

9 yrs

2. How long has it been since diagnosis?

13 yrs

3. Have you had liver transplant?

yes

4. How long after initial diagnosis did you get your new liver?

9 yrs

5. What procedures done relating to PSC?

US, CT Scan, gall bladder removed, ERCP, roux-en-y, liver biopsies,

transplant, MRCP's, colonoscopies, bone density scan, upper GI with

follow through, PTC and much blood work

6. How old are you?

55

Tim R ltx 4/4/98

[Guest guest]

1. How long from first suspicious symptoms until diagnosis? 4 yrs2. How long has it been since diagnosis? 7 yrs3. Have you had liver transplant? no4. How long after initial diagnosis did you get your new liver? na5. What procedures done relating to PSC? CT Scan, gall bladder removed, 5 ERCP's, liver biopsies,colonoscopies, and much blood work6. How old are you? 51

hillbillybob

psc dx 96, spinal stenosis dx 02

[Guest guest]

Have been absent for quite awhile, but have been lurking lately to catch up on everyone. May as well get in on the questionaire. Cy

Subject: Informal questionnairre, TRANSPLANT

Just trying to satisfy a curiosity.1. How long from first suspicious symptoms until diagnosis? got sick the end of June 1994, diagnosis Sept. 19942. How long has it been since diagnosis? almost 9 yrs.3. Have you had liver transplant? yes4. How long after initial diagnosis did you get your new liver? Tx, July 31, 19995. What procedures done relating to PSC? 3 ERCP's, colonoscopy,tests I don't even know the name of anymore, a total of 5 drainage tubes through my side before tx and after6. How old are you? 62now