s apt/warning, long

[Guest guest]

Most of you have already " been there, done that " with consideration of being

listed. To the pros, delet now:) Anyone else interesed, continue if you

wish. Our apt. started out with napping in the waiting room, go

figure! Dr. D, " Hi , how are you doing? (with my mouth shut if you can

believe that) - " fine Doc, not itching, just tired alot. I have this

huge stair case and handrail I'm doing, 40 g's worth, that I am trying to get

done. You'd be tired also " . Smile, laugh, shop talk, GTOS. Dr. D, " any

fevers? " - " yeh, a few but nothing to go to the hospital for " . -

" uh, didnt you get sick enough in canada that you started what was left of

your cipro? " Bri- " oh, yeh, I did " . - " you had swelling in your legs " .

Yeh, but it went away " . Dr. D- swelling, you would know if it was really

unusual " . - mouth shut but only for one more second! fires

away.......... Drs response to some of questions and thoughts. 1. I

am happy with his bili and albumin. 2.Hopefully the cell cept will slow the

progression, dont be surprised if the Mayo wants him to continue on it after

the one year study time frame. There has been alot of sucess's with

continuing studies. 3. Yes, has extensive bile duct damage, but the

" liver " is still early stage (cirrhosis). Aubrey, dr. did show me what

Bridging necrosis was. he said it hasnt " bridged " yet. The liver area

around the ducts was cirrhosising, but mild. ( sorry, layman terms). 4. No

ercp yet. Doesnt want to cause anymore problems at this time. What got me

was that all he did was check his stomach. In a nutshell, " lets leave things

the way they are. If has another " episode " cholangitis, fever or sick

enough to be hositalized, then we will do ercp and list him at that time. I

am venting, or just a worry wart, but is it time for another opinion? I was

not satified, however, was. is very active in taking care of his

health, diet and meds and rest, but is not active about learning about his

disease. I felt a little nervous about saying things to the Dr. that

is not even educated about, and I didnt want to upset and draw a

picture of doom and gloom, so I was a little careful as to what I said.

knows his body, I know his body. Thanks to this group, I can keep an

educated eye on him and coax him when its time to seek medical attention.

[Guest guest]

,

Would it help if you could call and talk to the doctor without

around? Maybe then you could get some of those questions answered that are

still rumbling around in your head. Or does your doctor have an email

address? That is how I have been communicating with my liver doc and also

the liver transplant coordinator - sure saves on the phone bill. Just an

idea...........

Hugs,

Barby

married 21 years, mom of 5 sons- KS

UC - dx in 1965 (11yo), ostomy 1972, BCIR (continent ostomy)1994

PSC- dx in 1999

[Guest guest]

--

Sounds like Dr. D. may be hoping for really good results w/the cell cept.

Like I told you when I was there, timing is very difficult. It's not an

easy surgery--in fact, I was told it's the worst surgery there is -- you're

taking the largest organ and replacing it, big incision, etc., going through

a lot of muscles and nerves. So you can't blame them for not wanting to

hurry up into that, but at the same time you don't want it to be too late

either. Did they ask his blood type? Dr. Sorrell always asked me

that, as did Dr. D. and they would reply that A+ wouldn't take as long to

get. So if is a common blood type, that may be the reason. When do

you go next?? Did he have labs?

Keeping you both in thoughts & prayers,

Laurie

s apt/warning, long

> Most of you have already " been there, done that " with consideration of

being

> listed. To the pros, delet now:) Anyone else interesed, continue if you

> wish. Our apt. started out with napping in the waiting room, go

> figure! Dr. D, " Hi , how are you doing? (with my mouth shut if you

can

> believe that) - " fine Doc, not itching, just tired alot. I have this

> huge stair case and handrail I'm doing, 40 g's worth, that I am trying to

get

> done. You'd be tired also " . Smile, laugh, shop talk, GTOS. Dr. D, " any

> fevers? " - " yeh, a few but nothing to go to the hospital for " .

-

> " uh, didnt you get sick enough in canada that you started what was left of

> your cipro? " Bri- " oh, yeh, I did " . - " you had swelling in your

legs " .

> Yeh, but it went away " . Dr. D- swelling, you would know if it was really

> unusual " . - mouth shut but only for one more second! fires

> away.......... Drs response to some of questions and thoughts. 1.

I

> am happy with his bili and albumin. 2.Hopefully the cell cept will slow

the

> progression, dont be surprised if the Mayo wants him to continue on it

after

> the one year study time frame. There has been alot of sucess's with

> continuing studies. 3. Yes, has extensive bile duct damage, but

the

> " liver " is still early stage (cirrhosis). Aubrey, dr. did show me what

> Bridging necrosis was. he said it hasnt " bridged " yet. The liver area

> around the ducts was cirrhosising, but mild. ( sorry, layman terms). 4.

No

> ercp yet. Doesnt want to cause anymore problems at this time. What got

me

> was that all he did was check his stomach. In a nutshell, " lets leave

things

> the way they are. If has another " episode " cholangitis, fever or

sick

> enough to be hositalized, then we will do ercp and list him at that time.

I

> am venting, or just a worry wart, but is it time for another opinion? I

was

> not satified, however, was. is very active in taking care of

his

> health, diet and meds and rest, but is not active about learning about his

> disease. I felt a little nervous about saying things to the Dr. that

> is not even educated about, and I didnt want to upset and draw a

> picture of doom and gloom, so I was a little careful as to what I said.

> knows his body, I know his body. Thanks to this group, I can keep

an

> educated eye on him and coax him when its time to seek medical attention.

>

>

>

>

>