RE: C-Diff Aubrey/

June 24, 2004

Very interesting. I guess I'm comforted a little by

knowing that this has been prescribed to another

PSC'er but still bothered that I don't know the

specifics from the ER doc. I called the ER and was

told that the doctor wasn't on shift and they

couldn't/wouldn't tell me when he would be working

again. I guess I understand that protocol but it still

quite frustrating. I left a message about my concerns

and if I haven't heard back from somebody by tomorrow

morning, I'll call them back and have them fax over

all of my medical records to my specialist (whih I

should do anyways). My specialist is very good about

calling me back the same day so there shouldn't be any

worries. Aubrey, thanks so much for your reply. It was

great to have specific areas of concern that I could

leave for the ER doctor. This group is very fortunate

to have you with us.

I do have UC but with Asacol it is well under control.

I've always had difficulties with Cipro but those

" difficuties " subside shortly after getting off the

Cipro.

So , how did they/you know you had sepsis? Is

there something that comes back in the blood work that

is an indicator? My AST/GGT/Alkphos/Bili were normal

for me but the white blood cell number was like 22K.

Thanks Aubrey/ for your responses.

Jeff

June 26, 2004

I will share more information about sepsis based on my experience in point form.

1. If too much bile accumulates, it can seep into the bloodstream causing sepsis (blood poisoning)

2. You have generally a four hour window to get treated if you are getting progressively worse (can be very serious if not treated promptly)

3. If you don't get treated in time and it gets worse, your blood vessels could dilate, your blood pressure could drop and you could pass while waiting in the ER like I did

4. ER doctors *MUST* do blood cultures STAT and if you have a fever you *DO NOT* wait to go into the ER and you should not have to wait to get into the ER either

5. If you develop symptoms while waiting in the ER (maybe it wasn't that serious when you came in) better tell the triage nurse *RIGHT AWAY*

I stress things because it's your life and you have to push if you have to. My own hepatologist (head of the liver department) said that ER staff should rush you into the ER right away if you have PSC with sepsis and an accompanying fever. If you don't have a fever you usually end up waiting. When I ended up waiting, I was coping for a while and all of a sudden I got really nauseous and I started to walk towards the washroom when I passed out. At the time (just before I passed out), I thought I was only 3 feet from the washroom. Turns out I was 15 feet away. This just goes to show you have confused/disoriented you could be. I think they should not have made me wait. If they hadn't I wouldn't have passed out on the floor but you see I didn't have a fever when I came in. After I was rushed in I developed one though. It just goes to show you how fast things can happen. My doctor said it's risky to be more than 4 hours away from a hospital. What happens if you have an attack and you're far away from treatment? This is why when people with PSC travel, they bring an emergency bag with them that includes the appropriate antibiotics in case they are away from treatment.

Hope this helps... By the way, Ursodiol can increase the amount of time between bacterial cholangitis attacks. If you don't take Ursodiol, you could get them every 6 weeks for example. So if it doesn't help with the itching, it certainly helps with this.

-----Original Message-----From: Jeff Hatfield Sent: June 24, 2004 9:19 PMTo: Subject: RE: C-Diff Aubrey/Very interesting. I guess I'm comforted a little byknowing that this has been prescribed to anotherPSC'er but still bothered that I don't know thespecifics from the ER doc. I called the ER and wastold that the doctor wasn't on shift and theycouldn't/wouldn't tell me when he would be workingagain. I guess I understand that protocol but it stillquite frustrating. I left a message about my concernsand if I haven't heard back from somebody by tomorrowmorning, I'll call them back and have them fax overall of my medical records to my specialist (whih Ishould do anyways). My specialist is very good aboutcalling me back the same day so there shouldn't be anyworries. Aubrey, thanks so much for your reply. It wasgreat to have specific areas of concern that I couldleave for the ER doctor. This group is very fortunateto have you with us.I do have UC but with Asacol it is well under control.I've always had difficulties with Cipro but those"difficuties" subside shortly after getting off theCipro. So , how did they/you know you had sepsis? Isthere something that comes back in the blood work thatis an indicator? My AST/GGT/Alkphos/Bili were normalfor me but the white blood cell number was like 22K.Thanks Aubrey/ for your responses.Jeff

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June 26, 2004

By the way, they do see a high white blood cell count as an indicator of bacterial cholangitis.

-----Original Message-----From: Bisaillon Sent: June 26, 2004 11:16 AMTo: Subject: RE: C-Diff Aubrey/