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Ah yes. Familiar territory for me. Each time my former GI did an

invasive procedure, I got an infection. Thankfully, I was finally

assigned an infectious disease specialist to manage my antibiotics and

watch for infection. He gave us very good advice when he suggested

doing cultures each time I had an invasive procedure to determine

exactly what was growing. I've mentioned this to the group before,

but you may have missed it. If you are on the wrong antibiotic for

the organism, you are wasting your time. If you are on the wrong

antibiotic, you will probably grow bacteria in the culture. I'm

allergic to a fair number of antibiotics, so being very careful is in

my best interest. At one point, my GI assumed a fever was due to my

gallbladder -- it was due to a massive infection caused by an ERCP

(nosocomial infection) that nearly took my life and made a 7 hour

emergency surgery necessary.

Penny

>

> He is treated by top docs and a top hospital that are clearly experts

> in PSC and bile duct infections but it is frustrating to have no real

> answers. Anybody have similar stories of repeated infections and

> unclear diagnosis?

>

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Ah yes. Familiar territory for me. Each time my former GI did an

invasive procedure, I got an infection. Thankfully, I was finally

assigned an infectious disease specialist to manage my antibiotics and

watch for infection. He gave us very good advice when he suggested

doing cultures each time I had an invasive procedure to determine

exactly what was growing. I've mentioned this to the group before,

but you may have missed it. If you are on the wrong antibiotic for

the organism, you are wasting your time. If you are on the wrong

antibiotic, you will probably grow bacteria in the culture. I'm

allergic to a fair number of antibiotics, so being very careful is in

my best interest. At one point, my GI assumed a fever was due to my

gallbladder -- it was due to a massive infection caused by an ERCP

(nosocomial infection) that nearly took my life and made a 7 hour

emergency surgery necessary.

Penny

>

> He is treated by top docs and a top hospital that are clearly experts

> in PSC and bile duct infections but it is frustrating to have no real

> answers. Anybody have similar stories of repeated infections and

> unclear diagnosis?

>

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This sounds familiar. For 45 days prior to my transplant I had similar events. I had PSC and had a PTCA - my bile duct was too small for an ERCP to work. After that I was on two or three different antibiotics until I was transplanted. They were never able to place a stent.

The doctor told me that anytime they do a PTCA or an ERCP they introduce bacteria. When you have PSC you are already compromised for bacteria anyway - especially if the biliruben is elevated - and this makes it worse.

Hopefully your husband will get on the transplant list soon.

To: Sent: Friday, December 19, 2008 5:03:13 PMSubject: Recurring Infections

This is my first post to this group. My husband has PSC (and UC/colon cancer 6-1/2 years ago). He is being evaluated for liver transplant but not a candidate yet based on MELD.He has spent 2 weeks out of the last 6 in the hospital, over 3 stays. First stay was inititated by fever following outpatient ERCP. Developed fever a few days after ERCP and went back to ER and diagnosed with cholangitis. While in hospital did another ERCP and placed a stent in. Went home with PIC line and IV antibiotics for 10 days, and after completion 2 days later developed fever. Back to hospital and no bugs this time but assumed stent was problem so did another ERCP and removed it. He stayed in hospital for a week and went home with PIC line again and IV antibiotics. Again after completion 3 days later developed fever. Back to hospital again. This time no source of fever was found. Suspect PIC line. Stayed for 4

days and now home with oral antibiotics. He is treated by top docs and a top hospital that are clearly experts in PSC and bile duct infections but it is frustrating to have no real answers. Anybody have similar stories of repeated infections and unclear diagnosis?

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This sounds familiar. For 45 days prior to my transplant I had similar events. I had PSC and had a PTCA - my bile duct was too small for an ERCP to work. After that I was on two or three different antibiotics until I was transplanted. They were never able to place a stent.

The doctor told me that anytime they do a PTCA or an ERCP they introduce bacteria. When you have PSC you are already compromised for bacteria anyway - especially if the biliruben is elevated - and this makes it worse.

Hopefully your husband will get on the transplant list soon.

To: Sent: Friday, December 19, 2008 5:03:13 PMSubject: Recurring Infections

This is my first post to this group. My husband has PSC (and UC/colon cancer 6-1/2 years ago). He is being evaluated for liver transplant but not a candidate yet based on MELD.He has spent 2 weeks out of the last 6 in the hospital, over 3 stays. First stay was inititated by fever following outpatient ERCP. Developed fever a few days after ERCP and went back to ER and diagnosed with cholangitis. While in hospital did another ERCP and placed a stent in. Went home with PIC line and IV antibiotics for 10 days, and after completion 2 days later developed fever. Back to hospital and no bugs this time but assumed stent was problem so did another ERCP and removed it. He stayed in hospital for a week and went home with PIC line again and IV antibiotics. Again after completion 3 days later developed fever. Back to hospital again. This time no source of fever was found. Suspect PIC line. Stayed for 4

days and now home with oral antibiotics. He is treated by top docs and a top hospital that are clearly experts in PSC and bile duct infections but it is frustrating to have no real answers. Anybody have similar stories of repeated infections and unclear diagnosis?

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This sounds familiar. For 45 days prior to my transplant I had similar events. I had PSC and had a PTCA - my bile duct was too small for an ERCP to work. After that I was on two or three different antibiotics until I was transplanted. They were never able to place a stent.

The doctor told me that anytime they do a PTCA or an ERCP they introduce bacteria. When you have PSC you are already compromised for bacteria anyway - especially if the biliruben is elevated - and this makes it worse.

Hopefully your husband will get on the transplant list soon.

To: Sent: Friday, December 19, 2008 5:03:13 PMSubject: Recurring Infections

This is my first post to this group. My husband has PSC (and UC/colon cancer 6-1/2 years ago). He is being evaluated for liver transplant but not a candidate yet based on MELD.He has spent 2 weeks out of the last 6 in the hospital, over 3 stays. First stay was inititated by fever following outpatient ERCP. Developed fever a few days after ERCP and went back to ER and diagnosed with cholangitis. While in hospital did another ERCP and placed a stent in. Went home with PIC line and IV antibiotics for 10 days, and after completion 2 days later developed fever. Back to hospital and no bugs this time but assumed stent was problem so did another ERCP and removed it. He stayed in hospital for a week and went home with PIC line again and IV antibiotics. Again after completion 3 days later developed fever. Back to hospital again. This time no source of fever was found. Suspect PIC line. Stayed for 4

days and now home with oral antibiotics. He is treated by top docs and a top hospital that are clearly experts in PSC and bile duct infections but it is frustrating to have no real answers. Anybody have similar stories of repeated infections and unclear diagnosis?

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Yes, I forgot to mention in my post that I finally became much better when they assigned an infectious disease specialist. They do cultures to determine what is the best antibiotic to use. They were a great resource to me.

To: Sent: Friday, December 19, 2008 7:01:42 PMSubject: Re: Recurring Infections

Ah yes. Familiar territory for me. Each time my former GI did aninvasive procedure, I got an infection. Thankfully, I was finallyassigned an infectious disease specialist to manage my antibiotics andwatch for infection. He gave us very good advice when he suggesteddoing cultures each time I had an invasive procedure to determineexactly what was growing. I've mentioned this to the group before,but you may have missed it. If you are on the wrong antibiotic forthe organism, you are wasting your time. If you are on the wrongantibiotic, you will probably grow bacteria in the culture. I'mallergic to a fair number of antibiotics, so being very careful is inmy best interest. At one point, my GI assumed a fever was due to mygallbladder -- it was due to a massive infection caused by an ERCP(nosocomial infection) that nearly took my life and made a 7 houremergency surgery

necessary.Penny> > He is treated by top docs and a top hospital that are clearly experts > in PSC and bile duct infections but it is frustrating to have no real > answers. Anybody have similar stories of repeated infections and > unclear diagnosis?>

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Welcome to the group fpjluckett,

We're sorry about your husband's diagnosis, but glad you have found us. How old is your husband and how many kids do you have, where abouts do you live, what are your names? (not that any of that really matters, it just helps us relate to one another). I am Ian, I am presently 52, was diagnosed when I was 33, my wife and I have four sons (23, 21, 17 & 14) and I have a strong faith in Jesus. I (and others of the group) will be praying for you and your husband. I don't think you will run into a situation that no one in the group has experienced before.

Ian (52) PSC 89.

This is my first post to this group. My husband has PSC (and UC/colon cancer 6-1/2 years ago). He is being evaluated for liver transplant but not a candidate yet based on MELD.He has spent 2 weeks out of the last 6 in the hospital, over 3

stays. First stay was inititated by fever following outpatient ERCP. Developed fever a few days after ERCP and went back to ER and diagnosed with cholangitis. While in hospital did another ERCP and placed a stent in. Went home with PIC line and IV antibiotics for 10

days, and after completion 2 days later developed fever. Back to hospital and no bugs this time but assumed stent was problem so did another ERCP and removed it. He stayed in hospital for a week and went home with PIC line again and IV antibiotics. Again after

completion 3 days later developed fever. Back to hospital again. This time no source of fever was found. Suspect PIC line. Stayed for 4 days and now home with oral antibiotics. He is treated by top docs and a top hospital that are clearly experts

in PSC and bile duct infections but it is frustrating to have no real answers. Anybody have similar stories of repeated infections and unclear diagnosis? -- Ian Cribb P.Eng.

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My husband is 49, diagnosed about 15 years ago with PSC, but

asymtomatic for years. We live in the metro DC area and have one

son, age 14. He is being treated at town University Hospital

for past year when his " numbers " started to increase. The

Infectious Disease people were involved in the selecion of

antibiotics - maybe this time they got it right. Sounds like these

episodes are par for the course as the disease progresses. As I

read others' stories it is painfully obvious that PSC patients get

very sick before transplant becomes a viable option. Sounds like a

long road ahead of us.

> >

> > This is my first post to this group. My husband has PSC (and

> > UC/colon cancer 6-1/2 years ago). He is being evaluated for liver

> > transplant but not a candidate yet based on MELD.

> >

> > He has spent 2 weeks out of the last 6 in the hospital, over 3

> > stays. First stay was inititated by fever following outpatient

> > ERCP. Developed fever a few days after ERCP and went back to ER

and

> > diagnosed with cholangitis. While in hospital did another ERCP

and

> > placed a stent in. Went home with PIC line and IV antibiotics

for 10

> > days, and after completion 2 days later developed fever. Back to

> > hospital and no bugs this time but assumed stent was problem so

did

> > another ERCP and removed it. He stayed in hospital for a week and

> > went home with PIC line again and IV antibiotics. Again after

> > completion 3 days later developed fever. Back to hospital again.

> > This time no source of fever was found. Suspect PIC line. Stayed

> > for 4 days and now home with oral antibiotics.

> >

> > He is treated by top docs and a top hospital that are clearly

experts

> > in PSC and bile duct infections but it is frustrating to have no

real

> > answers. Anybody have similar stories of repeated infections and

> > unclear diagnosis?

> >

> >

> >

>

>

>

> --

> Ian Cribb P.Eng.

>

>

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My husband is 49, diagnosed about 15 years ago with PSC, but

asymtomatic for years. We live in the metro DC area and have one

son, age 14. He is being treated at town University Hospital

for past year when his " numbers " started to increase. The

Infectious Disease people were involved in the selecion of

antibiotics - maybe this time they got it right. Sounds like these

episodes are par for the course as the disease progresses. As I

read others' stories it is painfully obvious that PSC patients get

very sick before transplant becomes a viable option. Sounds like a

long road ahead of us.

> >

> > This is my first post to this group. My husband has PSC (and

> > UC/colon cancer 6-1/2 years ago). He is being evaluated for liver

> > transplant but not a candidate yet based on MELD.

> >

> > He has spent 2 weeks out of the last 6 in the hospital, over 3

> > stays. First stay was inititated by fever following outpatient

> > ERCP. Developed fever a few days after ERCP and went back to ER

and

> > diagnosed with cholangitis. While in hospital did another ERCP

and

> > placed a stent in. Went home with PIC line and IV antibiotics

for 10

> > days, and after completion 2 days later developed fever. Back to

> > hospital and no bugs this time but assumed stent was problem so

did

> > another ERCP and removed it. He stayed in hospital for a week and

> > went home with PIC line again and IV antibiotics. Again after

> > completion 3 days later developed fever. Back to hospital again.

> > This time no source of fever was found. Suspect PIC line. Stayed

> > for 4 days and now home with oral antibiotics.

> >

> > He is treated by top docs and a top hospital that are clearly

experts

> > in PSC and bile duct infections but it is frustrating to have no

real

> > answers. Anybody have similar stories of repeated infections and

> > unclear diagnosis?

> >

> >

> >

>

>

>

> --

> Ian Cribb P.Eng.

>

>

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My husband is 49, diagnosed about 15 years ago with PSC, but

asymtomatic for years. We live in the metro DC area and have one

son, age 14. He is being treated at town University Hospital

for past year when his " numbers " started to increase. The

Infectious Disease people were involved in the selecion of

antibiotics - maybe this time they got it right. Sounds like these

episodes are par for the course as the disease progresses. As I

read others' stories it is painfully obvious that PSC patients get

very sick before transplant becomes a viable option. Sounds like a

long road ahead of us.

> >

> > This is my first post to this group. My husband has PSC (and

> > UC/colon cancer 6-1/2 years ago). He is being evaluated for liver

> > transplant but not a candidate yet based on MELD.

> >

> > He has spent 2 weeks out of the last 6 in the hospital, over 3

> > stays. First stay was inititated by fever following outpatient

> > ERCP. Developed fever a few days after ERCP and went back to ER

and

> > diagnosed with cholangitis. While in hospital did another ERCP

and

> > placed a stent in. Went home with PIC line and IV antibiotics

for 10

> > days, and after completion 2 days later developed fever. Back to

> > hospital and no bugs this time but assumed stent was problem so

did

> > another ERCP and removed it. He stayed in hospital for a week and

> > went home with PIC line again and IV antibiotics. Again after

> > completion 3 days later developed fever. Back to hospital again.

> > This time no source of fever was found. Suspect PIC line. Stayed

> > for 4 days and now home with oral antibiotics.

> >

> > He is treated by top docs and a top hospital that are clearly

experts

> > in PSC and bile duct infections but it is frustrating to have no

real

> > answers. Anybody have similar stories of repeated infections and

> > unclear diagnosis?

> >

> >

> >

>

>

>

> --

> Ian Cribb P.Eng.

>

>

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Like your husband, I was asymtomatic for 17 years. When I started having acute symptoms, the disease progressed rapidly. When I was first admitted to Northwestern Memorial Hospital in Chicago, my MELD was 13. They told me I would not get a transplant for some time. I was also told that PSC patients take quite awhile before they get sick enough for a transplant.

From there my biliruben spiked, my kidneys began to fail and my INR was elevated. While I was jaundiced, when I wasn't in the hospital, I was working. I felt fatigued but not sick; eventho, I had lost alot of weight rapidly. I was in and out of the hospital for the next thirty days. My MELD went to 29 and I was transplanted within a week.

While I may be an exception, PSC has a mind of its own. The really good news is that after the transplant I am no longer treated for PSC and the anti-rejections meds keep my UC under control. It is the best that it has been since I was diagnosed in 1990.

I will keep you and your family in my thoughts and prayers.

To: Sent: Saturday, December 20, 2008 8:36:53 AMSubject: Re: Recurring Infections

My husband is 49, diagnosed about 15 years ago with PSC, but asymtomatic for years. We live in the metro DC area and have one son, age 14. He is being treated at town University Hospital for past year when his "numbers" started to increase. The Infectious Disease people were involved in the selecion of antibiotics - maybe this time they got it right. Sounds like these episodes are par for the course as the disease progresses. As I read others' stories it is painfully obvious that PSC patients get very sick before transplant becomes a viable option. Sounds like a long road ahead of us.> >> > This is my first post to this group. My husband has PSC (and> > UC/colon cancer 6-1/2 years ago). He is being evaluated for liver> > transplant but not a candidate yet based on MELD.> >> > He has spent 2

weeks out of the last 6 in the hospital, over 3> > stays. First stay was inititated by fever following outpatient> > ERCP. Developed fever a few days after ERCP and went back to ER and> > diagnosed with cholangitis. While in hospital did another ERCP and> > placed a stent in. Went home with PIC line and IV antibiotics for 10> > days, and after completion 2 days later developed fever. Back to> > hospital and no bugs this time but assumed stent was problem so did> > another ERCP and removed it. He stayed in hospital for a week and> > went home with PIC line again and IV antibiotics. Again after> > completion 3 days later developed fever. Back to hospital again.> > This time no source of fever was found. Suspect PIC line. Stayed> > for 4 days and now home with oral antibiotics.> >> > He is treated by top docs and

a top hospital that are clearly experts> > in PSC and bile duct infections but it is frustrating to have no real> > answers. Anybody have similar stories of repeated infections and> > unclear diagnosis?> >> > > >> > > > -- > Ian Cribb P.Eng.> >

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-----Original

Message-----

As I read others' stories it is painfully obvious that PSC

patients get very sick before transplant becomes a viable option. Sounds like a

long road ahead of us.

I’m

so happy you joined our group, because in time, you’ll learn this isn’t

always the case! We have many members who worked right up to the week, or even the very

day of transplant and their numbers prove this isn’t as rare as it sounds! We even had one member (Phil) who had cholangitis

attacks all the time, he was in the hospital more than out of it, then one day they just

stopped. He was even (and remains

4-5 years later) removed from the transplant list, because he became too healthy!

If

you had met my son the day before his transplant, you would have never, ever known he was sick! He got very tired, itched like crazy,

and his liver numbers were in the tank, he couldn’t do everything he

wanted to, but he was well enough to lead a fairly normal pain free life.

Those

of us who have been in this group a long time can tell you, we’ve heard the

same story repeated time after time - “the doctor told us

if he hadn’t gotten the transplant when he did, he wouldn’t have

lasted long”. The

patient, caregivers & even doctors are amazed at how well some patients look

(and actually are!) before transplant.

They remove their old liver, which in many cases falls apart in their

hands, but other than MELD score, no one knew they were THAT sick.

Quality

of life can be quite good, please don’t get scared, hang in there, try

not to think too far into the future, because with PSC…..you just never

know…. that’s the one thing we’re all sure of. Welcome to the group!

Barb in Texas - Together in the Fight - Whatever it

Takes!

Son Ken (34) UC 91 PSC 99, LTX 6/21 & 6/30 2007

@ Baylor/Dallas

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-----Original

Message-----

As I read others' stories it is painfully obvious that PSC

patients get very sick before transplant becomes a viable option. Sounds like a

long road ahead of us.

I’m

so happy you joined our group, because in time, you’ll learn this isn’t

always the case! We have many members who worked right up to the week, or even the very

day of transplant and their numbers prove this isn’t as rare as it sounds! We even had one member (Phil) who had cholangitis

attacks all the time, he was in the hospital more than out of it, then one day they just

stopped. He was even (and remains

4-5 years later) removed from the transplant list, because he became too healthy!

If

you had met my son the day before his transplant, you would have never, ever known he was sick! He got very tired, itched like crazy,

and his liver numbers were in the tank, he couldn’t do everything he

wanted to, but he was well enough to lead a fairly normal pain free life.

Those

of us who have been in this group a long time can tell you, we’ve heard the

same story repeated time after time - “the doctor told us

if he hadn’t gotten the transplant when he did, he wouldn’t have

lasted long”. The

patient, caregivers & even doctors are amazed at how well some patients look

(and actually are!) before transplant.

They remove their old liver, which in many cases falls apart in their

hands, but other than MELD score, no one knew they were THAT sick.

Quality

of life can be quite good, please don’t get scared, hang in there, try

not to think too far into the future, because with PSC…..you just never

know…. that’s the one thing we’re all sure of. Welcome to the group!

Barb in Texas - Together in the Fight - Whatever it

Takes!

Son Ken (34) UC 91 PSC 99, LTX 6/21 & 6/30 2007

@ Baylor/Dallas

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-----Original

Message-----

As I read others' stories it is painfully obvious that PSC

patients get very sick before transplant becomes a viable option. Sounds like a

long road ahead of us.

I’m

so happy you joined our group, because in time, you’ll learn this isn’t

always the case! We have many members who worked right up to the week, or even the very

day of transplant and their numbers prove this isn’t as rare as it sounds! We even had one member (Phil) who had cholangitis

attacks all the time, he was in the hospital more than out of it, then one day they just

stopped. He was even (and remains

4-5 years later) removed from the transplant list, because he became too healthy!

If

you had met my son the day before his transplant, you would have never, ever known he was sick! He got very tired, itched like crazy,

and his liver numbers were in the tank, he couldn’t do everything he

wanted to, but he was well enough to lead a fairly normal pain free life.

Those

of us who have been in this group a long time can tell you, we’ve heard the

same story repeated time after time - “the doctor told us

if he hadn’t gotten the transplant when he did, he wouldn’t have

lasted long”. The

patient, caregivers & even doctors are amazed at how well some patients look

(and actually are!) before transplant.

They remove their old liver, which in many cases falls apart in their

hands, but other than MELD score, no one knew they were THAT sick.

Quality

of life can be quite good, please don’t get scared, hang in there, try

not to think too far into the future, because with PSC…..you just never

know…. that’s the one thing we’re all sure of. Welcome to the group!

Barb in Texas - Together in the Fight - Whatever it

Takes!

Son Ken (34) UC 91 PSC 99, LTX 6/21 & 6/30 2007

@ Baylor/Dallas

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-----Original

Message----- While I was jaundiced, when I wasn't in the

hospital, I was working. I felt fatigued but not sick;

Thanks Joe, while I

was typing like a turtle, you proved my point!

Barb in Texas - Together in the Fight - Whatever it

Takes!

Son Ken (34) UC 91 PSC 99, LTX 6/21 & 6/30 2007

@ Baylor/Dallas

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-----Original

Message----- While I was jaundiced, when I wasn't in the

hospital, I was working. I felt fatigued but not sick;

Thanks Joe, while I

was typing like a turtle, you proved my point!

Barb in Texas - Together in the Fight - Whatever it

Takes!

Son Ken (34) UC 91 PSC 99, LTX 6/21 & 6/30 2007

@ Baylor/Dallas

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I should have mentioned (although long term members know this) that I

was diagnosed in Dec. 1996 and the massive infection occurred in April

1997. For about two years I was hospitalized frequently -- going a

month or two without being in club med. was unusual. It has been

years since I've had a real problem and my blood work is so " normal "

that my new GI actually asked if I was sure of my diagnosis. My MRCPs

showed some improvement for years, but the most recent one shows one

small change that neither the GI or my primary consider a problem

...... YET.

We aren't sure why my liver is doing so well. It could be that I

wouldn't have had a problem and that the ERCP caused the domino effect

or it could be because of the SAM-e and my reluctance to do invasive

testing unless absolutely necessary.

I think it's safe to say that the course of the disease is unique to

each of us and there are many variables.

Penny

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Boy do I know this well I seem to live on anti botics.I get all sorts

of infections though not just cholangitis there isn't many days that I

don't have an infection somewhere in my body.I am just given a

different anti botic every time I get another.

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Boy do I know this well I seem to live on anti botics.I get all sorts

of infections though not just cholangitis there isn't many days that I

don't have an infection somewhere in my body.I am just given a

different anti botic every time I get another.

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Boy do I know this well I seem to live on anti botics.I get all sorts

of infections though not just cholangitis there isn't many days that I

don't have an infection somewhere in my body.I am just given a

different anti botic every time I get another.

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