RE: FOR THE GROUP - A ? ON BILIRUBIN

[Guest guest]

>

> My question - just when should we be concerned enough to see or

call the

> doctor? If his only " new " symptom is just a darker yellow color -

when

> is the time to be concerned? Or...should we not be concerned no

matter

> how yellow he gets and just wait it out - since he isn't complaining

> about anything else?

>

> Thanks everyone for your thoughts,

> Barb in Texas

Barb,

My doctor said that things like INR and Creatinine were more

indicative of how a liver is functioning than bilirubin with

cholestatic diseases. (My last bilirubin was 13.5, though I can see

that it has dropped since then.) Since you've got that intuition

thing going on, I'd see if he can get some blood work and get some

numbers for his other enzymes, etc, so that there is a truer picture

of what's going on. I know I have a standing order, so maybe there

wouldn't need to be a call to the doc until after the blood work is

completed? Then, if the results reveal something worrisome, you can

cope, and if not, then you'll know. Hope this helps in some small

way!

Deb in VA

AIH 1997, PSC 1998, UC 1999, Listed LTX 2001, MELD 18

[Guest guest]

>

Barb: I agree with Deb. Weekend and better safe than

sorry. Follow your intuition. Someone more knowledgeable

will get to you soon, I am sure. Until then get the ball

rolling.

Dee

--

[Guest guest]

Barb,

I agree with Deb's analysis. High bilirubin could just be the result

of increased duct blockage. Eventually that leads to the death of

liver cells and cirrhosis, but Ken's current status may be OK.

Increased INR and low albumin are indications that the liver can't

keep up with the body's needs and won't last much longer.

My own bilirubin has been creeping up this year, the latest was 7.3.

Because it has been steadily increasing my doctor feels it is time to

get reevaluated for listing, so in a week I'll start that process

again. My INR and albumin are normal and I don't have other symptoms

of advanced liver disease, so I am very comfortable with a slow

approach to getting another transplant.

Tim R ltx 4/4/98

> Good morning everyone,

>

> I saw Ken twice this last week. The first time his eyes were

yellow and

> I knew his Bilirubin was up. The second time (yesterday) he was

even

> more yellow and said his urine was very dark brown ...

>

> My question - just when should we be concerned enough to see or

call the

> doctor?

[Guest guest]

The rule of thumb is that if you have a fever you go right away to the hospital. I mean if I notice my temperature is increasing within 5-15 minutes I go even before I get the fever. Every time I've done that so far I've ended up staying in the hospital so I was right in doing that. I ended up having the fever after I got to the hospital. Along with the fever I got really yellow eyes (much more than usual because I have it most of the time) and dark urine. Usually when you're going down that path and your temperature is going up you really start to feel malaise (naseous, dizzy, etc.) and that's when it could be dangerous. I almost passed out a lot of times because if I get too malaise, my blood pressure drops and I could pass out. Once while I was waiting in the ER (I was waiting because I didn't have a fever yet but my temperature was slowly increasing), I passed out in front of the ER doors trying to make it to the washroom because I thought I was going to throw up. Turns out, I was going to pass out. Supposedly, the infection had gotten into my bloodstream and caused my blood vessels to dialate and my blood pressure to drop. It's scary when that happens and you feel awful. Anyway, after I passed out they pretty much took me in right away. My hepatologist told me if I have a fever when I enter the ER, that they should give me blood cultures and IV antiobiotics stat. She said you have a 2-4 hour window before you could be in a serious situation with a bad infection. It's serious and you can't fool around. She even wrote it on the card for me and said to push because it's my life. Don't let them say "no you have to wait for triage". Fortunately, I haven't had to do so because my fever came after I was already in acute in the ER. However, it may happen someday where I come in and already have the fever and if it does I trust that they'll push me right through.

If he has very dark brown urine, jaundice and a high bilirubin, I would talk to his doctor. If he gets a fever, go to the hospital a.s.a.p. That's my advice.

FOR THE GROUP - A ? ON BILIRUBIN

Good morning everyone,

I saw Ken twice this last week. The first time his eyes were yellow and I knew his Bilirubin was up. The second time (yesterday) he was even more yellow and said his urine was very dark brown. I can't tell if his skin is yellow as he has a tan.

This has happened many times before and we just wait it out, but this time - for some unknown reason - I am worried. He hasn't complained about anything new or different - just "the same old - same old" as he always says. No fever, no unusual or new pain - just feels the same old - same old.

My question - just when should we be concerned enough to see or call the doctor? If his only "new" symptom is just a darker yellow color - when is the time to be concerned? Or...should we not be concerned no matter how yellow he gets and just wait it out - since he isn't complaining about anything else?

Thanks everyone for your thoughts,

Barb in Texas

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