Re: Donna from Deb- I am new and need some advice

[Guest guest]

Donna,

You replied just right. I've had diagnosed PSC since 1998. Looking

over my medical record, I think it first started in 1990 with

obvious/troubling symptoms in 1994. Yes, I should have had some

antibiotics with me when I was away from home, and I've never been

without a reserve since the instance I related to you. It was a live

and learn situation. I think I was in a bit of denial at that time,

so I didn't want to believe that anything would go wrong on my trip.

The next year, when our family went to Hawaii, I had a bottle of pain

meds and three different types of antibiotics with me. I didn't use

ANY of them, and it was the best trip of my life.

I'm curious if your doctor has someone else covering her cases while

she's away. Invariably, I have a problem when my doc is out of town,

but his associates now know my case well enough that they can

determine if I need antibiotics, ER, or something else. I'd talk to

your doc about setting up some kind of a system for handling these

situations if one doesn't already exist. I'm betting she could be

more helpful, but just hasn't done so since the question hasn't been

asked. If you get fever and chills with that pain, go ahead to the ER

and tell them EXACTLY what's going on- over explain, and things

should be okay. Good doctors know when they're out of their depth and

call for backup. If you don't think you're getting good answers, ask

them to do that for you...

I know the pain isn't fun - hang in there!

Deb in VA

PSC 1998, UC 1999, Listed Ltx 2001, MELD 17

> I might have misrepresented this area. We do

> have hospitals and good doctors but no one specializes in livers so

I

> do not fully trust them in an emergency situation.

> Deb, I am curious as to why you would not have a supply of

antibiotics

> with you just in case?? I have Cipro for my pouchitis and was

tempted

> to take one but am not sure I should be doctoring myself.

> How long have you had PSC?

[Guest guest]

> > I might have misrepresented this area. We do

> > have hospitals and good doctors but no one specializes in livers so

> I

> > do not fully trust them in an emergency situation.

> > Deb, I am curious as to why you would not have a supply of

> antibiotics

> > with you just in case?? I have Cipro for my pouchitis and was

> tempted

> > to take one but am not sure I should be doctoring myself.

> > How long have you had PSC?

What were your symptoms in 1994, Deb? My pain seems to be coming

back, being absent for most part of the day. Do you think I should

take a Cipro or is that not the antibiotic that is used? I have a

bottle of that used for my j-pouch which I rarely take. I should

really call my family dr. tomorrow. The dr at UCLA would have a dr on

call but this AM I felt no pain so I did not ask to speak with anyone

and just wanted an appt for next week. Perhaps I should make that

call tomorrow.

How is your UC treating you and how long have you had it? What is Ltx

2001 and MELD 17?

[Guest guest]

Donna,

I'll start by explaining my signature line. PSC (obvious by now)

1998, UC (ulcerative colitis) diagnosed 1999, Listed Ltx 2001 (listed

for liver transplant 2001), MELD 17 (Model for End Stage Liver

Disease score is 17. This is the score that transplant centers use to

rank you on their list of transplant candidates.) MELD is something

that you can look up on the UNOS web site (www.unos.org). That site

explains the information far better than I can tonight! I hope that

explanation helps.

As far as whether you should take the Cipro or not, I'm not sure.

Cipro is often used, but not exclusively. I've often been given it in

conjunction with other antibiotics (like Flagyl, Leviquin, or

Augmentin). I wish I could help more on that end. (I'd hate to give

you the wrong advice and make matters worse.) On a related note, my

symptoms in 1994 were fatigue, pain, and cholangitis attacks - only I

thought I was experiencing the flu.

If I were you, I would definitely call tonight (if the pain is

unbearable) or tomorrow to talk to a live doctor. At the very least,

a medical professional should be able to discern whether you need

emergent care based on the medical history you share with him/her and

your symptoms. I often feel no pain in the morning, but do later in

the day or at night after I've had a heavier meal. I'm wondering if

you have your gall bladder intact? I've had mine removed because it

was very diseased (no stones), and that pain was very similar to a

cholangitis attack. Sometimes, I'd have both pains together. You

might want to ask about what role your gall bladder might be playing

when you discuss the pain with your doctor. Also, if they're not

convinced that it is cholangitis, you may be passing gall stones

(whether or not you have a gall bladder) that have formed in your

bile ducts. This can be quite painful! For either of these causes, if

you're experiencing the increased pain after eating a lot of fat, I'd

decrease the fat in your diet. When I was having my gall bladder

troubles, I ate less than 30 grams of fat/day. Many in this group

find that a low-fat diet improves things.

As for my UC - Well, up until the last two days, I'd say it was non-

existent. Now, either I'm experiencing food poisoning or a flare of

some sort. I've been mostly a-symptomatic since diagnosis. (The only

reason UC was diagnosed was because of a colonoscopy that the doctor

did because so many PSCers have bowel disease.) It sounds like your

UC has been more active...I think it was who noted that her

husband had pneumonia - well, I had bronchitis/pneumonia earlier this

fall, and my latest cold is trying to go there again. I'm not feeling

stellar at all this evening - but I'm in good spirits.

My cirrhosis-induced insomnia keeps me up - maybe I'll get lucky and

get to sleep before 2:00 tonight. Sorry this is so long everyone...

Take care!

Deb in VA

PSC 1998, UC 1999, Listed Ltx 2001, MELD 17

>

> What were your symptoms in 1994, Deb? My pain seems to be coming

> back, being absent for most part of the day. Do you think I should

> take a Cipro or is that not the antibiotic that is used? I have a

> bottle of that used for my j-pouch which I rarely take. I should

> really call my family dr. tomorrow. The dr at UCLA would have a dr

on

> call but this AM I felt no pain so I did not ask to speak with

anyone

> and just wanted an appt for next week. Perhaps I should make that

> call tomorrow.

> How is your UC treating you and how long have you had it? What is

Ltx

> 2001 and MELD 17?

[Guest guest]

>

> Donna,

>

> I'll start by explaining my signature line. PSC (obvious by now)

> 1998, UC (ulcerative colitis) diagnosed 1999, Listed Ltx 2001 (listed

> for liver transplant 2001), MELD 17 (Model for End Stage Liver

> Disease score is 17. This is the score that transplant centers use to

> rank you on their list of transplant candidates.) MELD is something

> that you can look up on the UNOS web site (www.unos.org). That site

> explains the information far better than I can tonight! I hope that

> explanation helps.

>

> As far as whether you should take the Cipro or not, I'm not sure.

> Cipro is often used, but not exclusively. I've often been given it in

> conjunction with other antibiotics (like Flagyl, Leviquin, or

> Augmentin). I wish I could help more on that end. (I'd hate to give

> you the wrong advice and make matters worse.) On a related note, my

> symptoms in 1994 were fatigue, pain, and cholangitis attacks - only I

> thought I was experiencing the flu.

>

> If I were you, I would definitely call tonight (if the pain is

> unbearable) or tomorrow to talk to a live doctor. At the very least,

> a medical professional should be able to discern whether you need

> emergent care based on the medical history you share with him/her and

> your symptoms. I often feel no pain in the morning, but do later in

> the day or at night after I've had a heavier meal. I'm wondering if

> you have your gall bladder intact? I've had mine removed because it

> was very diseased (no stones), and that pain was very similar to a

> cholangitis attack. Sometimes, I'd have both pains together. You

> might want to ask about what role your gall bladder might be playing

> when you discuss the pain with your doctor. Also, if they're not

> convinced that it is cholangitis, you may be passing gall stones

> (whether or not you have a gall bladder) that have formed in your

> bile ducts. This can be quite painful! For either of these causes, if

> you're experiencing the increased pain after eating a lot of fat, I'd

> decrease the fat in your diet. When I was having my gall bladder

> troubles, I ate less than 30 grams of fat/day. Many in this group

> find that a low-fat diet improves things.

>

> As for my UC - Well, up until the last two days, I'd say it was non-

> existent. Now, either I'm experiencing food poisoning or a flare of

> some sort. I've been mostly a-symptomatic since diagnosis. (The only

> reason UC was diagnosed was because of a colonoscopy that the doctor

> did because so many PSCers have bowel disease.) It sounds like your

> UC has been more active...I think it was who noted that her

> husband had pneumonia - well, I had bronchitis/pneumonia earlier this

> fall, and my latest cold is trying to go there again. I'm not feeling

> stellar at all this evening - but I'm in good spirits.

>

> My cirrhosis-induced insomnia keeps me up - maybe I'll get lucky and

> get to sleep before 2:00 tonight. Sorry this is so long everyone...

>

> Take care!

> Deb in VA

> PSC 1998, UC 1999, Listed Ltx 2001, MELD 17

> >

> > What were your symptoms in 1994, Deb? My pain seems to be coming

> > back, being absent for most part of the day. Do you think I should

> > take a Cipro or is that not the antibiotic that is used? I have a

> > bottle of that used for my j-pouch which I rarely take. I should

> > really call my family dr. tomorrow. The dr at UCLA would have a dr

> on

> > call but this AM I felt no pain so I did not ask to speak with

> anyone

> > and just wanted an appt for next week. Perhaps I should make that

> > call tomorrow.

> > How is your UC treating you and how long have you had it? What is

> Ltx

> > 2001 and MELD 17?

So Deb, you are on the liver transplant list? Are you able to lead a

somewhat normal life - going out, working, tending to children?

Also, let me say about my pain - not bad at all but I know it is

there. It is just a low grade pain and not constant but I have never

felt it like this before. No itching, no fever, feeling fine, energy,

etc. Maybe I should not be concerned at the moment?

[Guest guest]

I replied to Donna off-list, but I wanted to post this portion for

everyone's benefit - a just my 2 cents kind of thing:

I have a rule - anytime there's a new symptom, I report it to the

doctor soon. I don't let it go. If it turns out to be nothing, I'm

comforted. If it turns out to be something, I didn't let it mushroom

and become too big to handle.

Take care,

Deb in VA

PSC 1998, UC 1999, Listed Ltx 2001, MELD 17

> > Also, let me say about my pain - not bad at all but I know it is

> there. It is just a low grade pain and not constant but I have

never

> felt it like this before. No itching, no fever, feeling fine,

energy,

> etc. Maybe I should not be concerned at the moment?