Re: New PSC Diagnosis

[Guest guest]

Sue,

I'd like to say a quick welcome to the group. I'm sorry you have a

reason to be here, but glad that you found us. I'm not sure how to

answer your question because I'm not sure what you're already doing

for fatigue. Most people in this group are on Ursodiol or Actigall to

thin their bile, and for some that normalizes enzyme levels and

lessens symptoms. There is some evidence that at an appropriate dose,

Urso may offer real hope for PSC. (There are several ongoing studies

to determine this and there are others on this site who can point you

in the direction of proper dosing.) Some of us have taken frequent

naps. Others have tried antidepressants like Wellbutrin to get some

energy back. I did that prior to my transplant in '05 and it seemed to

make some difference.

I'm curious as to why they opted to do a biliary bypass (what exactly

is that?) and a right lobectomy? I haven't heard any other group

members who have had those things done, though I'm sure I've missed

some posts along the way since I joined a couple of years ago...

I hope you're hanging in there okay. Keep asking questions of this

knowledgable group. For doing research on your own, I'd suggest

looking at www.psc-literature.org. It was created by one of our

members and has a great FAQ site as well as literally thousands of

articles on PSC and related illnesses/subjects.

Best wishes and welcome,

Deb in VA

PSC 1998, UC 1999, Listed Ltx 2001, LDLTX 5/19/2005, Post-surgical

biliary strictures with stents 9/2005-3/2006, Partial Portal Vein

Thrombosis 7/2005, 3 sinus surgeries in 2006, Osteopenia 7/2006,

Intestinal Varicies 8/2006. For updates see:

caringbridge.org/va/deniseb

[Guest guest]

Sue,

I'd like to say a quick welcome to the group. I'm sorry you have a

reason to be here, but glad that you found us. I'm not sure how to

answer your question because I'm not sure what you're already doing

for fatigue. Most people in this group are on Ursodiol or Actigall to

thin their bile, and for some that normalizes enzyme levels and

lessens symptoms. There is some evidence that at an appropriate dose,

Urso may offer real hope for PSC. (There are several ongoing studies

to determine this and there are others on this site who can point you

in the direction of proper dosing.) Some of us have taken frequent

naps. Others have tried antidepressants like Wellbutrin to get some

energy back. I did that prior to my transplant in '05 and it seemed to

make some difference.

I'm curious as to why they opted to do a biliary bypass (what exactly

is that?) and a right lobectomy? I haven't heard any other group

members who have had those things done, though I'm sure I've missed

some posts along the way since I joined a couple of years ago...

I hope you're hanging in there okay. Keep asking questions of this

knowledgable group. For doing research on your own, I'd suggest

looking at www.psc-literature.org. It was created by one of our

members and has a great FAQ site as well as literally thousands of

articles on PSC and related illnesses/subjects.

Best wishes and welcome,

Deb in VA

PSC 1998, UC 1999, Listed Ltx 2001, LDLTX 5/19/2005, Post-surgical

biliary strictures with stents 9/2005-3/2006, Partial Portal Vein

Thrombosis 7/2005, 3 sinus surgeries in 2006, Osteopenia 7/2006,

Intestinal Varicies 8/2006. For updates see:

caringbridge.org/va/deniseb

[Guest guest]

Sue,

I'm curious, did your doctors ever talk about liver transplant prior

to doing this other major surgery? The reason I ask is that I was

told before my transplant that it was better to wait to do the

transplant than to do any cutting prior. I'm guessing that they had

a reason for proceeding differently in your case. PSC certainly

could have caused all of the scarring in your right lobe. My left

lobe was toast before my living donor liver transplant in '05. They

estimate that patients can have the disease for years before

experiencing symptoms, so you might have had it for 10+ years

without even knowing it.

I'm sorry you're dealing with so many infections. I bet they're

infections caused by the bile backing up in your ducts

(cholangitis). I had a lot of problems with them, too. In fact,

that's why they listed me for transplant, before I was even very

cirrhotic. I hope they stay away for a while after this course of

antibiotics! Oh, your dose of Ursodiol sounds like it is a tad on

the low side unless you're really tiny. That's how much I take, and

I'm taking the small dose because I have trouble tolerating it. You

might want to look for the dosage calculator to see how many

millegrams per killogram of body weight you need to be taking. (Can

someone else please point her to where that is? I don't recall.)

Hang in there!

Deb in VA

PSC 1998, UC 1999, Listed Ltx 2001, LDLTX 5/19/2005, Post-surgical

biliary strictures with stents 9/2005-3/2006, Partial Portal Vein

Thrombosis 7/2005, 3 sinus surgeries in 2006, Osteopenia 7/2006,

Intestinal Varicies 8/2006. For updates see:

caringbridge.org/va/deniseb

[Guest guest]

Hi Deb, Liver transplant was mentioned as one course of treatment that may be taken. I got the impression that I did not meet the criteria to go on the transplant list. Yes, I had cholangitis and was in the hospital approx. every two weeks prior to surgery because the stents no longer worked. In fact my last two stays were exactly a week apart. I had exploratory surgery in 10/06. I had had every cancer test known, but the brushings from the bile ducts kept coming back abnormal so the GI I was seeing at the time wanted me to have exploratory surgery. The general surgeon went in prepared to do a whipple, but no cancer, (great news!!). He said my biliary tract was shaped real funky and the Gall bladder was diseased. When I continued to be sick after the surgery they referred me to University Hospital,in 1/06. I wish I would have been there at least a

year before I was. It would have saved a major surgery and I would have had a diagnosis a lot sooner. I returned to work the 1st of this month. Wheeeew, that has been an undertaking, talk about your tired. I called to advise my doctor that I began taking antibotics over the week-end and that resulted in my being referred back to the surgeon. Due to the bypass I cannot have an ERCP, but I was told he may want to order a cholangiogram, (sp?). My surgeon is a liver transplant surgeon and he will be leaving the hospital on 12/8. At this hospital when a transplant doctor operates another liver transplant doctor goes in with him. That doctor will still be at the hospital and I really like him too.....but I hope I will not need their services, ha! My appt. is next Tuesday. I have read some of the resources you sent. I

saw the results of a study done on high doses of Ursodoil on one site. I'm not tiny and I don't know why this dosage was ordered. I began taking it in June. It is so good to communicate with someone who understands the disease, thank-you! Sue eb in VA wrote: Sue,I'm curious, did your doctors ever talk about liver transplant prior to doing this other major surgery? The reason I ask is that I was

told before my transplant that it was better to wait to do the transplant than to do any cutting prior. I'm guessing that they had a reason for proceeding differently in your case. PSC certainly could have caused all of the scarring in your right lobe. My left lobe was toast before my living donor liver transplant in '05. They estimate that patients can have the disease for years before experiencing symptoms, so you might have had it for 10+ years without even knowing it.I'm sorry you're dealing with so many infections. I bet they're infections caused by the bile backing up in your ducts (cholangitis). I had a lot of problems with them, too. In fact, that's why they listed me for transplant, before I was even very cirrhotic. I hope they stay away for a while after this course of antibiotics! Oh, your dose of Ursodiol sounds like it is a tad on the low side unless you're really tiny. That's how much I

take, and I'm taking the small dose because I have trouble tolerating it. You might want to look for the dosage calculator to see how many millegrams per killogram of body weight you need to be taking. (Can someone else please point her to where that is? I don't recall.)Hang in there!Deb in VAPSC 1998, UC 1999, Listed Ltx 2001, LDLTX 5/19/2005, Post-surgical biliary strictures with stents 9/2005-3/2006, Partial Portal Vein Thrombosis 7/2005, 3 sinus surgeries in 2006, Osteopenia 7/2006, Intestinal Varicies 8/2006. For updates see: caringbridge.org/va/deniseb

Want to start your own business? Learn how on Yahoo! Small Business.

[Guest guest]

Hi Deb, Liver transplant was mentioned as one course of treatment that may be taken. I got the impression that I did not meet the criteria to go on the transplant list. Yes, I had cholangitis and was in the hospital approx. every two weeks prior to surgery because the stents no longer worked. In fact my last two stays were exactly a week apart. I had exploratory surgery in 10/06. I had had every cancer test known, but the brushings from the bile ducts kept coming back abnormal so the GI I was seeing at the time wanted me to have exploratory surgery. The general surgeon went in prepared to do a whipple, but no cancer, (great news!!). He said my biliary tract was shaped real funky and the Gall bladder was diseased. When I continued to be sick after the surgery they referred me to University Hospital,in 1/06. I wish I would have been there at least a

year before I was. It would have saved a major surgery and I would have had a diagnosis a lot sooner. I returned to work the 1st of this month. Wheeeew, that has been an undertaking, talk about your tired. I called to advise my doctor that I began taking antibotics over the week-end and that resulted in my being referred back to the surgeon. Due to the bypass I cannot have an ERCP, but I was told he may want to order a cholangiogram, (sp?). My surgeon is a liver transplant surgeon and he will be leaving the hospital on 12/8. At this hospital when a transplant doctor operates another liver transplant doctor goes in with him. That doctor will still be at the hospital and I really like him too.....but I hope I will not need their services, ha! My appt. is next Tuesday. I have read some of the resources you sent. I

saw the results of a study done on high doses of Ursodoil on one site. I'm not tiny and I don't know why this dosage was ordered. I began taking it in June. It is so good to communicate with someone who understands the disease, thank-you! Sue eb in VA wrote: Sue,I'm curious, did your doctors ever talk about liver transplant prior to doing this other major surgery? The reason I ask is that I was

told before my transplant that it was better to wait to do the transplant than to do any cutting prior. I'm guessing that they had a reason for proceeding differently in your case. PSC certainly could have caused all of the scarring in your right lobe. My left lobe was toast before my living donor liver transplant in '05. They estimate that patients can have the disease for years before experiencing symptoms, so you might have had it for 10+ years without even knowing it.I'm sorry you're dealing with so many infections. I bet they're infections caused by the bile backing up in your ducts (cholangitis). I had a lot of problems with them, too. In fact, that's why they listed me for transplant, before I was even very cirrhotic. I hope they stay away for a while after this course of antibiotics! Oh, your dose of Ursodiol sounds like it is a tad on the low side unless you're really tiny. That's how much I

take, and I'm taking the small dose because I have trouble tolerating it. You might want to look for the dosage calculator to see how many millegrams per killogram of body weight you need to be taking. (Can someone else please point her to where that is? I don't recall.)Hang in there!Deb in VAPSC 1998, UC 1999, Listed Ltx 2001, LDLTX 5/19/2005, Post-surgical biliary strictures with stents 9/2005-3/2006, Partial Portal Vein Thrombosis 7/2005, 3 sinus surgeries in 2006, Osteopenia 7/2006, Intestinal Varicies 8/2006. For updates see: caringbridge.org/va/deniseb

Want to start your own business? Learn how on Yahoo! Small Business.

[Guest guest]

Hi ,

I just read your e-mail and what do you had to go through. I went nearly the same path. Getting in Dec. 04 jaundice, went through tests over tests and than came in Feb. 05 the news, that I have to have the Exploritory, because I have pancreatic cancer and they do the whipple. The doctor smashed me with these news right into my face and I had to live 2 weeks with that knowledge, that I have maybe cancer. I did not receive any emotional support from the clinic, they only ask me if I have health insurance, which I don't have. You should have seen the faces of the doctors when I answered no. In Feb. 05 I was on the table and they closed me up 1 1/2 hours later with 28 stables and the knowledge that they did not found any cancer near or in the pancreas, but they took my gallbladder out, just in case. 5 weeks later I got another jaundice attack and was back in hospital. This time the radiologist put 2 stents - one left and one on the right side - into my body. Both stents were working fine and after 1 year I got in April 06 one stent out. Now I have one stent left and fortunately it is working, every 8 to 10 weeks I go for the cable change, my numbers are so far not too bad, I had no jaundice attack anymore. I take 2000 mg Urso Forte per day as well as 3 to 4 times a day 20mg Creon. I am doing fine so far and I try now to find a part time job, which is very difficult, because I guess no employer wants somebody to employ with an unpredictable disease. But I hang in there and be as positive as I can be. As my husband was diagnosed in August with throat cancer and is undergoing radiation treatment at the moment, my life is very stressful but I keep my german humor going. Regarding coming on a transplant list was never an option for my doctors as I am too healthy for a transplant but they mentioned that this situation can change anytime. As I said before, I can feel with you after all these ups and downs and dealing with doctors. I will keep you in my thoughts and prayers, take care,

JuttaPSC since Dec. 04

___

Stay in touch with old friends and meet new ones with Windows Live Spaces

[Guest guest]

Hi ,

I just read your e-mail and what do you had to go through. I went nearly the same path. Getting in Dec. 04 jaundice, went through tests over tests and than came in Feb. 05 the news, that I have to have the Exploritory, because I have pancreatic cancer and they do the whipple. The doctor smashed me with these news right into my face and I had to live 2 weeks with that knowledge, that I have maybe cancer. I did not receive any emotional support from the clinic, they only ask me if I have health insurance, which I don't have. You should have seen the faces of the doctors when I answered no. In Feb. 05 I was on the table and they closed me up 1 1/2 hours later with 28 stables and the knowledge that they did not found any cancer near or in the pancreas, but they took my gallbladder out, just in case. 5 weeks later I got another jaundice attack and was back in hospital. This time the radiologist put 2 stents - one left and one on the right side - into my body. Both stents were working fine and after 1 year I got in April 06 one stent out. Now I have one stent left and fortunately it is working, every 8 to 10 weeks I go for the cable change, my numbers are so far not too bad, I had no jaundice attack anymore. I take 2000 mg Urso Forte per day as well as 3 to 4 times a day 20mg Creon. I am doing fine so far and I try now to find a part time job, which is very difficult, because I guess no employer wants somebody to employ with an unpredictable disease. But I hang in there and be as positive as I can be. As my husband was diagnosed in August with throat cancer and is undergoing radiation treatment at the moment, my life is very stressful but I keep my german humor going. Regarding coming on a transplant list was never an option for my doctors as I am too healthy for a transplant but they mentioned that this situation can change anytime. As I said before, I can feel with you after all these ups and downs and dealing with doctors. I will keep you in my thoughts and prayers, take care,

JuttaPSC since Dec. 04

___

Stay in touch with old friends and meet new ones with Windows Live Spaces

[Guest guest]

Hi ,

I just read your e-mail and what do you had to go through. I went nearly the same path. Getting in Dec. 04 jaundice, went through tests over tests and than came in Feb. 05 the news, that I have to have the Exploritory, because I have pancreatic cancer and they do the whipple. The doctor smashed me with these news right into my face and I had to live 2 weeks with that knowledge, that I have maybe cancer. I did not receive any emotional support from the clinic, they only ask me if I have health insurance, which I don't have. You should have seen the faces of the doctors when I answered no. In Feb. 05 I was on the table and they closed me up 1 1/2 hours later with 28 stables and the knowledge that they did not found any cancer near or in the pancreas, but they took my gallbladder out, just in case. 5 weeks later I got another jaundice attack and was back in hospital. This time the radiologist put 2 stents - one left and one on the right side - into my body. Both stents were working fine and after 1 year I got in April 06 one stent out. Now I have one stent left and fortunately it is working, every 8 to 10 weeks I go for the cable change, my numbers are so far not too bad, I had no jaundice attack anymore. I take 2000 mg Urso Forte per day as well as 3 to 4 times a day 20mg Creon. I am doing fine so far and I try now to find a part time job, which is very difficult, because I guess no employer wants somebody to employ with an unpredictable disease. But I hang in there and be as positive as I can be. As my husband was diagnosed in August with throat cancer and is undergoing radiation treatment at the moment, my life is very stressful but I keep my german humor going. Regarding coming on a transplant list was never an option for my doctors as I am too healthy for a transplant but they mentioned that this situation can change anytime. As I said before, I can feel with you after all these ups and downs and dealing with doctors. I will keep you in my thoughts and prayers, take care,

JuttaPSC since Dec. 04

___

Stay in touch with old friends and meet new ones with Windows Live Spaces

[Guest guest]

Sue,

What a year you've had! So many new things to deal with and all of

those hospitalizations! From what you've written, it sounds like

you'd be a candidate for transplant at some of the places where I

listed, but I obviously don't know your whole medical history. You

could have other health concerns that might eliminate you from a

transplant, though they've obviously proven that you could withstand

and recover from major abdominal surgery - and that's usually what

they're looking for in an evaluation. They're main question: Is this

person going to survive the operation and have a real chance at life

following a transplant?

This is just my humble opinion, hearing only the limited information

that you've shared - before you let them poke you further, I would

quiz the doctors about being evaluated for liver transplant. I would

ask under what circumstances would they list me for transplant. We

have other members who have been listed with low MELD scores who

have only had cholangitis attacks - not even cirrhosis. (That was

initially why I was listed for transplant myself. I was on

maintenance antibiotics - if I stopped taking them for more than two

days, I was infected.)

I was told prior to transplant that there was no reason to cut out a

portion of my liver because it would grow back diseased, so that is

why I'm surprised that they have done this with you. I didn't have

the " is it cancer? " issue that you've had, though, and perhaps that

is why they have treated you differently? I know many of our group

members who have struggled with being whether they've had

cholangiocarcinoma (bile duct cancer) have gone to the Mayo clinc to

Dr. Gores for a second opinion. The only way to reduce the cancer

risk completely is to get a new liver, so that's why I'm surprised

that they aren't moving you in that direction. When they did your

prior surgery, did they take out your gallbladder? I felt loads

better the year that they removed mine. Eventually, they stopped

doing so many ERCP's on me because that was the only way to let my

MELD score rise. I had to have the blockages in order to get the

liver.

I hope you don't feel like you're getting 20 questions. These are

just things for you to think about, and you don't have to answer at

all if you don't want to. I just wanted to share what I've learned

in hopes of helping you along your journey. I've had a very strange

course myself, and I'm not someone who would ordinarily suggest

rushing to transplant...I've just never heard a case like yours and

I'm intrigued as to why the doctors have proceeded the way that they

have.

HTH,

Deb in VA

PSC 1998, UC 1999, Listed Ltx 2001, LDLTX 5/19/2005, Post-surgical

biliary strictures with stents 9/2005-3/2006, Partial Portal Vein

Thrombosis 7/2005, 3 sinus surgeries in 2006, Osteopenia 7/2006,

Intestinal Varicies 8/2006. For updates see:

caringbridge.org/va/deniseb

[Guest guest]

Sue,

What a year you've had! So many new things to deal with and all of

those hospitalizations! From what you've written, it sounds like

you'd be a candidate for transplant at some of the places where I

listed, but I obviously don't know your whole medical history. You

could have other health concerns that might eliminate you from a

transplant, though they've obviously proven that you could withstand

and recover from major abdominal surgery - and that's usually what

they're looking for in an evaluation. They're main question: Is this

person going to survive the operation and have a real chance at life

following a transplant?

This is just my humble opinion, hearing only the limited information

that you've shared - before you let them poke you further, I would

quiz the doctors about being evaluated for liver transplant. I would

ask under what circumstances would they list me for transplant. We

have other members who have been listed with low MELD scores who

have only had cholangitis attacks - not even cirrhosis. (That was

initially why I was listed for transplant myself. I was on

maintenance antibiotics - if I stopped taking them for more than two

days, I was infected.)

I was told prior to transplant that there was no reason to cut out a

portion of my liver because it would grow back diseased, so that is

why I'm surprised that they have done this with you. I didn't have

the " is it cancer? " issue that you've had, though, and perhaps that

is why they have treated you differently? I know many of our group

members who have struggled with being whether they've had

cholangiocarcinoma (bile duct cancer) have gone to the Mayo clinc to

Dr. Gores for a second opinion. The only way to reduce the cancer

risk completely is to get a new liver, so that's why I'm surprised

that they aren't moving you in that direction. When they did your

prior surgery, did they take out your gallbladder? I felt loads

better the year that they removed mine. Eventually, they stopped

doing so many ERCP's on me because that was the only way to let my

MELD score rise. I had to have the blockages in order to get the

liver.

I hope you don't feel like you're getting 20 questions. These are

just things for you to think about, and you don't have to answer at

all if you don't want to. I just wanted to share what I've learned

in hopes of helping you along your journey. I've had a very strange

course myself, and I'm not someone who would ordinarily suggest

rushing to transplant...I've just never heard a case like yours and

I'm intrigued as to why the doctors have proceeded the way that they

have.

HTH,

Deb in VA

PSC 1998, UC 1999, Listed Ltx 2001, LDLTX 5/19/2005, Post-surgical

biliary strictures with stents 9/2005-3/2006, Partial Portal Vein

Thrombosis 7/2005, 3 sinus surgeries in 2006, Osteopenia 7/2006,

Intestinal Varicies 8/2006. For updates see:

caringbridge.org/va/deniseb

[Guest guest]

Sue,

What a year you've had! So many new things to deal with and all of

those hospitalizations! From what you've written, it sounds like

you'd be a candidate for transplant at some of the places where I

listed, but I obviously don't know your whole medical history. You

could have other health concerns that might eliminate you from a

transplant, though they've obviously proven that you could withstand

and recover from major abdominal surgery - and that's usually what

they're looking for in an evaluation. They're main question: Is this

person going to survive the operation and have a real chance at life

following a transplant?

This is just my humble opinion, hearing only the limited information

that you've shared - before you let them poke you further, I would

quiz the doctors about being evaluated for liver transplant. I would

ask under what circumstances would they list me for transplant. We

have other members who have been listed with low MELD scores who

have only had cholangitis attacks - not even cirrhosis. (That was

initially why I was listed for transplant myself. I was on

maintenance antibiotics - if I stopped taking them for more than two

days, I was infected.)

I was told prior to transplant that there was no reason to cut out a

portion of my liver because it would grow back diseased, so that is

why I'm surprised that they have done this with you. I didn't have

the " is it cancer? " issue that you've had, though, and perhaps that

is why they have treated you differently? I know many of our group

members who have struggled with being whether they've had

cholangiocarcinoma (bile duct cancer) have gone to the Mayo clinc to

Dr. Gores for a second opinion. The only way to reduce the cancer

risk completely is to get a new liver, so that's why I'm surprised

that they aren't moving you in that direction. When they did your

prior surgery, did they take out your gallbladder? I felt loads

better the year that they removed mine. Eventually, they stopped

doing so many ERCP's on me because that was the only way to let my

MELD score rise. I had to have the blockages in order to get the

liver.

I hope you don't feel like you're getting 20 questions. These are

just things for you to think about, and you don't have to answer at

all if you don't want to. I just wanted to share what I've learned

in hopes of helping you along your journey. I've had a very strange

course myself, and I'm not someone who would ordinarily suggest

rushing to transplant...I've just never heard a case like yours and

I'm intrigued as to why the doctors have proceeded the way that they

have.

HTH,

Deb in VA

PSC 1998, UC 1999, Listed Ltx 2001, LDLTX 5/19/2005, Post-surgical

biliary strictures with stents 9/2005-3/2006, Partial Portal Vein

Thrombosis 7/2005, 3 sinus surgeries in 2006, Osteopenia 7/2006,

Intestinal Varicies 8/2006. For updates see:

caringbridge.org/va/deniseb

[Guest guest]

Deb, I don't think cancer was an issue by the time I was referred to the University. In fact the GI and General surgery did not think I had cancer, they both said they thought I looked to healthy and had not lost any weight, but they wanted to make sure no cancer exists. The doc. I see now said they would not have done that surgery if I would have been down there. I think they knew what the abnormal brushing were. I never thought of having cirrhosis, in fact I was constantly told my liver was healthy and we needed to intervene with the bypass to keep it from being damaged. After surgery the surgeon stated he did not think I would ever need a transplant. I got the impression that he thought the PSC would not progress that far in my lifetime. Can you visualize my head spinning? I feel as though it is with the infection returning and all this new

information. Have you had problems since your by-pass? Thanks for all the information and taking an interest. You have given me lots to think about and access to alot of information. I was limited to Web MD, PSC, as I'm sure you know the information that comes up is limited. I also have a couple books that my husband found at Borders. They are interesting. It is unbelievable what the liver does. Thanks!! Sue Deb in VA wrote: Sue,What a year you've had! So many new things to deal with and all of those hospitalizations! From what you've written, it sounds like you'd be a candidate for transplant at some of the places where I listed, but I obviously don't know your whole medical history. You could have other health concerns that might eliminate you from a transplant, though they've obviously proven that you could withstand and recover from major abdominal surgery - and that's usually what they're looking for in an evaluation. They're main question: Is this person going to survive the operation and have a real chance at life following a transplant? This is just my humble opinion, hearing only the limited information that you've shared - before you let them poke you further, I would quiz the doctors about being evaluated for liver transplant. I would ask under what

circumstances would they list me for transplant. We have other members who have been listed with low MELD scores who have only had cholangitis attacks - not even cirrhosis. (That was initially why I was listed for transplant myself. I was on maintenance antibiotics - if I stopped taking them for more than two days, I was infected.) I was told prior to transplant that there was no reason to cut out a portion of my liver because it would grow back diseased, so that is why I'm surprised that they have done this with you. I didn't have the "is it cancer?" issue that you've had, though, and perhaps that is why they have treated you differently? I know many of our group members who have struggled with being whether they've had cholangiocarcinoma (bile duct cancer) have gone to the Mayo clinc to Dr. Gores for a second opinion. The only way to reduce the cancer risk completely is to get a new liver, so that's why I'm

surprised that they aren't moving you in that direction. When they did your prior surgery, did they take out your gallbladder? I felt loads better the year that they removed mine. Eventually, they stopped doing so many ERCP's on me because that was the only way to let my MELD score rise. I had to have the blockages in order to get the liver.I hope you don't feel like you're getting 20 questions. These are just things for you to think about, and you don't have to answer at all if you don't want to. I just wanted to share what I've learned in hopes of helping you along your journey. I've had a very strange course myself, and I'm not someone who would ordinarily suggest rushing to transplant...I've just never heard a case like yours and I'm intrigued as to why the doctors have proceeded the way that they have.HTH,Deb in VAPSC 1998, UC 1999, Listed Ltx 2001, LDLTX 5/19/2005, Post-surgical

biliary strictures with stents 9/2005-3/2006, Partial Portal Vein Thrombosis 7/2005, 3 sinus surgeries in 2006, Osteopenia 7/2006, Intestinal Varicies 8/2006. For updates see: caringbridge.org/va/deniseb

Sponsored LinkMortgage rates near 39yr lows. $510,000 Mortgage for $1,698/mo - Calculate new house payment

[Guest guest]

Deb, I don't think cancer was an issue by the time I was referred to the University. In fact the GI and General surgery did not think I had cancer, they both said they thought I looked to healthy and had not lost any weight, but they wanted to make sure no cancer exists. The doc. I see now said they would not have done that surgery if I would have been down there. I think they knew what the abnormal brushing were. I never thought of having cirrhosis, in fact I was constantly told my liver was healthy and we needed to intervene with the bypass to keep it from being damaged. After surgery the surgeon stated he did not think I would ever need a transplant. I got the impression that he thought the PSC would not progress that far in my lifetime. Can you visualize my head spinning? I feel as though it is with the infection returning and all this new

information. Have you had problems since your by-pass? Thanks for all the information and taking an interest. You have given me lots to think about and access to alot of information. I was limited to Web MD, PSC, as I'm sure you know the information that comes up is limited. I also have a couple books that my husband found at Borders. They are interesting. It is unbelievable what the liver does. Thanks!! Sue Deb in VA wrote: Sue,What a year you've had! So many new things to deal with and all of those hospitalizations! From what you've written, it sounds like you'd be a candidate for transplant at some of the places where I listed, but I obviously don't know your whole medical history. You could have other health concerns that might eliminate you from a transplant, though they've obviously proven that you could withstand and recover from major abdominal surgery - and that's usually what they're looking for in an evaluation. They're main question: Is this person going to survive the operation and have a real chance at life following a transplant? This is just my humble opinion, hearing only the limited information that you've shared - before you let them poke you further, I would quiz the doctors about being evaluated for liver transplant. I would ask under what

circumstances would they list me for transplant. We have other members who have been listed with low MELD scores who have only had cholangitis attacks - not even cirrhosis. (That was initially why I was listed for transplant myself. I was on maintenance antibiotics - if I stopped taking them for more than two days, I was infected.) I was told prior to transplant that there was no reason to cut out a portion of my liver because it would grow back diseased, so that is why I'm surprised that they have done this with you. I didn't have the "is it cancer?" issue that you've had, though, and perhaps that is why they have treated you differently? I know many of our group members who have struggled with being whether they've had cholangiocarcinoma (bile duct cancer) have gone to the Mayo clinc to Dr. Gores for a second opinion. The only way to reduce the cancer risk completely is to get a new liver, so that's why I'm

surprised that they aren't moving you in that direction. When they did your prior surgery, did they take out your gallbladder? I felt loads better the year that they removed mine. Eventually, they stopped doing so many ERCP's on me because that was the only way to let my MELD score rise. I had to have the blockages in order to get the liver.I hope you don't feel like you're getting 20 questions. These are just things for you to think about, and you don't have to answer at all if you don't want to. I just wanted to share what I've learned in hopes of helping you along your journey. I've had a very strange course myself, and I'm not someone who would ordinarily suggest rushing to transplant...I've just never heard a case like yours and I'm intrigued as to why the doctors have proceeded the way that they have.HTH,Deb in VAPSC 1998, UC 1999, Listed Ltx 2001, LDLTX 5/19/2005, Post-surgical

biliary strictures with stents 9/2005-3/2006, Partial Portal Vein Thrombosis 7/2005, 3 sinus surgeries in 2006, Osteopenia 7/2006, Intestinal Varicies 8/2006. For updates see: caringbridge.org/va/deniseb

Sponsored LinkMortgage rates near 39yr lows. $510,000 Mortgage for $1,698/mo - Calculate new house payment

[Guest guest]

Deb, I don't think cancer was an issue by the time I was referred to the University. In fact the GI and General surgery did not think I had cancer, they both said they thought I looked to healthy and had not lost any weight, but they wanted to make sure no cancer exists. The doc. I see now said they would not have done that surgery if I would have been down there. I think they knew what the abnormal brushing were. I never thought of having cirrhosis, in fact I was constantly told my liver was healthy and we needed to intervene with the bypass to keep it from being damaged. After surgery the surgeon stated he did not think I would ever need a transplant. I got the impression that he thought the PSC would not progress that far in my lifetime. Can you visualize my head spinning? I feel as though it is with the infection returning and all this new

information. Have you had problems since your by-pass? Thanks for all the information and taking an interest. You have given me lots to think about and access to alot of information. I was limited to Web MD, PSC, as I'm sure you know the information that comes up is limited. I also have a couple books that my husband found at Borders. They are interesting. It is unbelievable what the liver does. Thanks!! Sue Deb in VA wrote: Sue,What a year you've had! So many new things to deal with and all of those hospitalizations! From what you've written, it sounds like you'd be a candidate for transplant at some of the places where I listed, but I obviously don't know your whole medical history. You could have other health concerns that might eliminate you from a transplant, though they've obviously proven that you could withstand and recover from major abdominal surgery - and that's usually what they're looking for in an evaluation. They're main question: Is this person going to survive the operation and have a real chance at life following a transplant? This is just my humble opinion, hearing only the limited information that you've shared - before you let them poke you further, I would quiz the doctors about being evaluated for liver transplant. I would ask under what

circumstances would they list me for transplant. We have other members who have been listed with low MELD scores who have only had cholangitis attacks - not even cirrhosis. (That was initially why I was listed for transplant myself. I was on maintenance antibiotics - if I stopped taking them for more than two days, I was infected.) I was told prior to transplant that there was no reason to cut out a portion of my liver because it would grow back diseased, so that is why I'm surprised that they have done this with you. I didn't have the "is it cancer?" issue that you've had, though, and perhaps that is why they have treated you differently? I know many of our group members who have struggled with being whether they've had cholangiocarcinoma (bile duct cancer) have gone to the Mayo clinc to Dr. Gores for a second opinion. The only way to reduce the cancer risk completely is to get a new liver, so that's why I'm

surprised that they aren't moving you in that direction. When they did your prior surgery, did they take out your gallbladder? I felt loads better the year that they removed mine. Eventually, they stopped doing so many ERCP's on me because that was the only way to let my MELD score rise. I had to have the blockages in order to get the liver.I hope you don't feel like you're getting 20 questions. These are just things for you to think about, and you don't have to answer at all if you don't want to. I just wanted to share what I've learned in hopes of helping you along your journey. I've had a very strange course myself, and I'm not someone who would ordinarily suggest rushing to transplant...I've just never heard a case like yours and I'm intrigued as to why the doctors have proceeded the way that they have.HTH,Deb in VAPSC 1998, UC 1999, Listed Ltx 2001, LDLTX 5/19/2005, Post-surgical

biliary strictures with stents 9/2005-3/2006, Partial Portal Vein Thrombosis 7/2005, 3 sinus surgeries in 2006, Osteopenia 7/2006, Intestinal Varicies 8/2006. For updates see: caringbridge.org/va/deniseb

Sponsored LinkMortgage rates near 39yr lows. $510,000 Mortgage for $1,698/mo - Calculate new house payment

[Guest guest]

Hi Jutta, Our paths do sound very similar. My gall bladder was removed also, it was actually diseased. Glad to hear the stents are working for you. I had 10 ERCPs in a year and eventually the stents did not work. The last one worked for less than 10 days. Because of the bypass ERCP is no longer an option for me, so I'm anxious for the doctor's appt. on Tues. to see what the next course will be. I'm so sorry to hear about your husband's illness. I can't imagine the stress you both must be dealing with. I too will keep you and your husband in my prayers. Sue"J. H." wrote: Hi , I just read your e-mail and what do you had to go through. I went nearly the same path. Getting in Dec. 04 jaundice, went through tests over tests and than came in Feb. 05 the news, that I have to have the Exploritory, because I have pancreatic cancer and they do the whipple. The doctor smashed me with these news right into my face and I had to live 2 weeks with that knowledge, that I have maybe cancer. I did not receive any emotional support from the clinic, they only ask me if I have health insurance, which I don't have. You should have seen the faces of the doctors when I answered no. In Feb. 05 I was on the table and they closed me up 1 1/2 hours later with 28 stables and the knowledge that they did not found any cancer near or in the

pancreas, but they took my gallbladder out, just in case. 5 weeks later I got another jaundice attack and was back in hospital. This time the radiologist put 2 stents - one left and one on the right side - into my body. Both stents were working fine and after 1 year I got in April 06 one stent out. Now I have one stent left and fortunately it is working, every 8 to 10 weeks I go for the cable change, my numbers are so far not too bad, I had no jaundice attack anymore. I take 2000 mg Urso Forte per day as well as 3 to 4 times a day 20mg Creon. I am doing fine so far and I try now to find a part time job, which is very difficult, because I guess no employer wants somebody to employ with an unpredictable disease. But I hang in there and be as positive as I can be. As my husband was diagnosed in August with throat cancer and is undergoing radiation treatment at the moment, my life is very stressful but I keep my german humor going. Regarding coming on a transplant list was

never an option for my doctors as I am too healthy for a transplant but they mentioned that this situation can change anytime. As I said before, I can feel with you after all these ups and downs and dealing with doctors. I will keep you in my thoughts and prayers, take care, JuttaPSC since Dec. 04 ___ Stay in touch with old friends and meet new ones with Windows Live Spaces

Check out the all-new Yahoo! Mail beta - Fire up a more powerful email and get things done faster.

[Guest guest]

Hi Jutta, Our paths do sound very similar. My gall bladder was removed also, it was actually diseased. Glad to hear the stents are working for you. I had 10 ERCPs in a year and eventually the stents did not work. The last one worked for less than 10 days. Because of the bypass ERCP is no longer an option for me, so I'm anxious for the doctor's appt. on Tues. to see what the next course will be. I'm so sorry to hear about your husband's illness. I can't imagine the stress you both must be dealing with. I too will keep you and your husband in my prayers. Sue"J. H." wrote: Hi , I just read your e-mail and what do you had to go through. I went nearly the same path. Getting in Dec. 04 jaundice, went through tests over tests and than came in Feb. 05 the news, that I have to have the Exploritory, because I have pancreatic cancer and they do the whipple. The doctor smashed me with these news right into my face and I had to live 2 weeks with that knowledge, that I have maybe cancer. I did not receive any emotional support from the clinic, they only ask me if I have health insurance, which I don't have. You should have seen the faces of the doctors when I answered no. In Feb. 05 I was on the table and they closed me up 1 1/2 hours later with 28 stables and the knowledge that they did not found any cancer near or in the

pancreas, but they took my gallbladder out, just in case. 5 weeks later I got another jaundice attack and was back in hospital. This time the radiologist put 2 stents - one left and one on the right side - into my body. Both stents were working fine and after 1 year I got in April 06 one stent out. Now I have one stent left and fortunately it is working, every 8 to 10 weeks I go for the cable change, my numbers are so far not too bad, I had no jaundice attack anymore. I take 2000 mg Urso Forte per day as well as 3 to 4 times a day 20mg Creon. I am doing fine so far and I try now to find a part time job, which is very difficult, because I guess no employer wants somebody to employ with an unpredictable disease. But I hang in there and be as positive as I can be. As my husband was diagnosed in August with throat cancer and is undergoing radiation treatment at the moment, my life is very stressful but I keep my german humor going. Regarding coming on a transplant list was

never an option for my doctors as I am too healthy for a transplant but they mentioned that this situation can change anytime. As I said before, I can feel with you after all these ups and downs and dealing with doctors. I will keep you in my thoughts and prayers, take care, JuttaPSC since Dec. 04 ___ Stay in touch with old friends and meet new ones with Windows Live Spaces

Check out the all-new Yahoo! Mail beta - Fire up a more powerful email and get things done faster.

[Guest guest]

Hi Jutta, Our paths do sound very similar. My gall bladder was removed also, it was actually diseased. Glad to hear the stents are working for you. I had 10 ERCPs in a year and eventually the stents did not work. The last one worked for less than 10 days. Because of the bypass ERCP is no longer an option for me, so I'm anxious for the doctor's appt. on Tues. to see what the next course will be. I'm so sorry to hear about your husband's illness. I can't imagine the stress you both must be dealing with. I too will keep you and your husband in my prayers. Sue"J. H." wrote: Hi , I just read your e-mail and what do you had to go through. I went nearly the same path. Getting in Dec. 04 jaundice, went through tests over tests and than came in Feb. 05 the news, that I have to have the Exploritory, because I have pancreatic cancer and they do the whipple. The doctor smashed me with these news right into my face and I had to live 2 weeks with that knowledge, that I have maybe cancer. I did not receive any emotional support from the clinic, they only ask me if I have health insurance, which I don't have. You should have seen the faces of the doctors when I answered no. In Feb. 05 I was on the table and they closed me up 1 1/2 hours later with 28 stables and the knowledge that they did not found any cancer near or in the

pancreas, but they took my gallbladder out, just in case. 5 weeks later I got another jaundice attack and was back in hospital. This time the radiologist put 2 stents - one left and one on the right side - into my body. Both stents were working fine and after 1 year I got in April 06 one stent out. Now I have one stent left and fortunately it is working, every 8 to 10 weeks I go for the cable change, my numbers are so far not too bad, I had no jaundice attack anymore. I take 2000 mg Urso Forte per day as well as 3 to 4 times a day 20mg Creon. I am doing fine so far and I try now to find a part time job, which is very difficult, because I guess no employer wants somebody to employ with an unpredictable disease. But I hang in there and be as positive as I can be. As my husband was diagnosed in August with throat cancer and is undergoing radiation treatment at the moment, my life is very stressful but I keep my german humor going. Regarding coming on a transplant list was

never an option for my doctors as I am too healthy for a transplant but they mentioned that this situation can change anytime. As I said before, I can feel with you after all these ups and downs and dealing with doctors. I will keep you in my thoughts and prayers, take care, JuttaPSC since Dec. 04 ___ Stay in touch with old friends and meet new ones with Windows Live Spaces

Check out the all-new Yahoo! Mail beta - Fire up a more powerful email and get things done faster.

[Guest guest]

Sue,

It sounds like a good thing that you're now seeing the University

docs! I'm glad to hear that they better understand what's going on.

I would ask them as many questions as you can about what your future

looks like and about all that you're learning now about PSC. It

sounds like your former surgeon was well-intentioned, but didn't

understand much about PSC (or even that you had it prior to doing

the surgery, if I understood you correctly). It sounds like you're

on a better path now that you have doctors who are familiar with PSC

on your team.

I am much better after my living donor transplant when my husband

donated the right lobe of his liver to me. I have had some

complications, and I'm learning to live a very different life

following the surgery. Before the surgery, I had those infections, I

had encephalopathy, and I itched constantly. I also had the fatigue

and about a zillion other little things that bothered me everyday.

Since the surgery, the hardest part has been learning what is normal

for me as someone who is immunosuppressed. After nearly a year and a

half, I can now tell when I'm getting sick - what aches and

pains/symptoms can be ignored and which cannot.

My complications included some bile duct strictures from the way

that things healed after the surgery. They did some PTC's (the kind

of cholangiogram where they stick a tube in your belly to open up

the bile duct), and eventually, after wearing those darn external

drain tubes for months, the new ducts decided to stay open. I've

also had a blood clot in my portal vein. This wasn't bad by itself,

but impacted how the new liver regrew inside me and caused some

problems there. More recently, having the clot has caused some

portal hypertension, so I now have varices in my intestines. Almost

no one gets these, I've read, so again, I'm a medical oddity.

I'm leaving out huge expanses of my experience, like my battle with

my sinsuses once I started taking the immunosuppressive drugs, but

I'm feeling much better now than I did before transplant. I only

itch a little now and then. My fatigue is MUCH better. I've actually

gained weight for the first time in my life (okay, now I have to

fight to keep the pounds off thanks to 5 mg of prednisone a day),

and I'm finally feeling like I'm getting back into my life.

If there's anything I've learned in the past two years, it is that

you have to educate yourself and keep your doctors on their toes

with lots of questions. My doctors know that I'm a force to be dealt

with, and that they'd better be ready for my questions when they

come to talk to me about a plan of treatment. I think you're doing

the right thing, being here and looking for your own answers.

Oh, one last thing - someone will call you on it soon if I don't

mention it. On the list, we try to remember to delete out all but

the most pertinant portions of the previous post when we reply - it

especially helps for the people who receive the digest version of

the emails.

Take care,

Deb in VA

PSC 1998, UC 1999, Listed Ltx 2001, LDLTX 5/19/2005, Post-surgical

biliary strictures with stents 9/2005-3/2006, Partial Portal Vein

Thrombosis 7/2005, 3 sinus surgeries in 2006, Osteopenia 7/2006,

Intestinal Varicies 8/2006. For updates see:

caringbridge.org/va/deniseb

[Guest guest]

Sue,

It sounds like a good thing that you're now seeing the University

docs! I'm glad to hear that they better understand what's going on.

I would ask them as many questions as you can about what your future

looks like and about all that you're learning now about PSC. It

sounds like your former surgeon was well-intentioned, but didn't

understand much about PSC (or even that you had it prior to doing

the surgery, if I understood you correctly). It sounds like you're

on a better path now that you have doctors who are familiar with PSC

on your team.

I am much better after my living donor transplant when my husband

donated the right lobe of his liver to me. I have had some

complications, and I'm learning to live a very different life

following the surgery. Before the surgery, I had those infections, I

had encephalopathy, and I itched constantly. I also had the fatigue

and about a zillion other little things that bothered me everyday.

Since the surgery, the hardest part has been learning what is normal

for me as someone who is immunosuppressed. After nearly a year and a

half, I can now tell when I'm getting sick - what aches and

pains/symptoms can be ignored and which cannot.

My complications included some bile duct strictures from the way

that things healed after the surgery. They did some PTC's (the kind

of cholangiogram where they stick a tube in your belly to open up

the bile duct), and eventually, after wearing those darn external

drain tubes for months, the new ducts decided to stay open. I've

also had a blood clot in my portal vein. This wasn't bad by itself,

but impacted how the new liver regrew inside me and caused some

problems there. More recently, having the clot has caused some

portal hypertension, so I now have varices in my intestines. Almost

no one gets these, I've read, so again, I'm a medical oddity.

I'm leaving out huge expanses of my experience, like my battle with

my sinsuses once I started taking the immunosuppressive drugs, but

I'm feeling much better now than I did before transplant. I only

itch a little now and then. My fatigue is MUCH better. I've actually

gained weight for the first time in my life (okay, now I have to

fight to keep the pounds off thanks to 5 mg of prednisone a day),

and I'm finally feeling like I'm getting back into my life.

If there's anything I've learned in the past two years, it is that

you have to educate yourself and keep your doctors on their toes

with lots of questions. My doctors know that I'm a force to be dealt

with, and that they'd better be ready for my questions when they

come to talk to me about a plan of treatment. I think you're doing

the right thing, being here and looking for your own answers.

Oh, one last thing - someone will call you on it soon if I don't

mention it. On the list, we try to remember to delete out all but

the most pertinant portions of the previous post when we reply - it

especially helps for the people who receive the digest version of

the emails.

Take care,

Deb in VA

PSC 1998, UC 1999, Listed Ltx 2001, LDLTX 5/19/2005, Post-surgical

biliary strictures with stents 9/2005-3/2006, Partial Portal Vein

Thrombosis 7/2005, 3 sinus surgeries in 2006, Osteopenia 7/2006,

Intestinal Varicies 8/2006. For updates see:

caringbridge.org/va/deniseb

[Guest guest]

Sue,

It sounds like a good thing that you're now seeing the University

docs! I'm glad to hear that they better understand what's going on.

I would ask them as many questions as you can about what your future

looks like and about all that you're learning now about PSC. It

sounds like your former surgeon was well-intentioned, but didn't

understand much about PSC (or even that you had it prior to doing

the surgery, if I understood you correctly). It sounds like you're

on a better path now that you have doctors who are familiar with PSC

on your team.

I am much better after my living donor transplant when my husband

donated the right lobe of his liver to me. I have had some

complications, and I'm learning to live a very different life

following the surgery. Before the surgery, I had those infections, I

had encephalopathy, and I itched constantly. I also had the fatigue

and about a zillion other little things that bothered me everyday.

Since the surgery, the hardest part has been learning what is normal

for me as someone who is immunosuppressed. After nearly a year and a

half, I can now tell when I'm getting sick - what aches and

pains/symptoms can be ignored and which cannot.

My complications included some bile duct strictures from the way

that things healed after the surgery. They did some PTC's (the kind

of cholangiogram where they stick a tube in your belly to open up

the bile duct), and eventually, after wearing those darn external

drain tubes for months, the new ducts decided to stay open. I've

also had a blood clot in my portal vein. This wasn't bad by itself,

but impacted how the new liver regrew inside me and caused some

problems there. More recently, having the clot has caused some

portal hypertension, so I now have varices in my intestines. Almost

no one gets these, I've read, so again, I'm a medical oddity.

I'm leaving out huge expanses of my experience, like my battle with

my sinsuses once I started taking the immunosuppressive drugs, but

I'm feeling much better now than I did before transplant. I only

itch a little now and then. My fatigue is MUCH better. I've actually

gained weight for the first time in my life (okay, now I have to

fight to keep the pounds off thanks to 5 mg of prednisone a day),

and I'm finally feeling like I'm getting back into my life.

If there's anything I've learned in the past two years, it is that

you have to educate yourself and keep your doctors on their toes

with lots of questions. My doctors know that I'm a force to be dealt

with, and that they'd better be ready for my questions when they

come to talk to me about a plan of treatment. I think you're doing

the right thing, being here and looking for your own answers.

Oh, one last thing - someone will call you on it soon if I don't

mention it. On the list, we try to remember to delete out all but

the most pertinant portions of the previous post when we reply - it

especially helps for the people who receive the digest version of

the emails.

Take care,

Deb in VA

PSC 1998, UC 1999, Listed Ltx 2001, LDLTX 5/19/2005, Post-surgical

biliary strictures with stents 9/2005-3/2006, Partial Portal Vein

Thrombosis 7/2005, 3 sinus surgeries in 2006, Osteopenia 7/2006,

Intestinal Varicies 8/2006. For updates see:

caringbridge.org/va/deniseb

[Guest guest]

, Welcome to the group. I'm sorry that you find yourself here but I have found that the people here really support and help one another. I didn't know about this group until after my transplant but I'm happy I found it. I use to get so tired that I would fall asleep at my desk at work. I didn't know what to do about but and then one day I mentioned to my chiropractor (who I was seeing for something else) and he suggested that I have a session with the accupunturist in the office. I really found that these sessions helped me alot. No more falling asleep at work. In fact when we went on a family trip to Europe I was the only one who wasn't jet lagged. Just make sure you let them know that you hae a liver problem and that you need something to help with the fatigue that it is causing. Buczak wrote: I had a biliary bi-pass and the right lobe of my liver removed in 3/06, at that time I was also diagnosed with PSC. I have found very little information about the disease. I'm interested to know if there is a diet that is helpful and if there is anything that helps fight the tiredness. Sue Cheap Talk? Check out Yahoo! Messenger's low PC-to-Phone call rates.

Sponsored LinkMortgage rates near 39yr lows. $310,000 Mortgage for $999/mo - Calculate new house payment

[Guest guest]

, Welcome to the group. I'm sorry that you find yourself here but I have found that the people here really support and help one another. I didn't know about this group until after my transplant but I'm happy I found it. I use to get so tired that I would fall asleep at my desk at work. I didn't know what to do about but and then one day I mentioned to my chiropractor (who I was seeing for something else) and he suggested that I have a session with the accupunturist in the office. I really found that these sessions helped me alot. No more falling asleep at work. In fact when we went on a family trip to Europe I was the only one who wasn't jet lagged. Just make sure you let them know that you hae a liver problem and that you need something to help with the fatigue that it is causing. Buczak wrote: I had a biliary bi-pass and the right lobe of my liver removed in 3/06, at that time I was also diagnosed with PSC. I have found very little information about the disease. I'm interested to know if there is a diet that is helpful and if there is anything that helps fight the tiredness. Sue Cheap Talk? Check out Yahoo! Messenger's low PC-to-Phone call rates.

Sponsored LinkMortgage rates near 39yr lows. $310,000 Mortgage for $999/mo - Calculate new house payment

[Guest guest]

, Welcome to the group. I'm sorry that you find yourself here but I have found that the people here really support and help one another. I didn't know about this group until after my transplant but I'm happy I found it. I use to get so tired that I would fall asleep at my desk at work. I didn't know what to do about but and then one day I mentioned to my chiropractor (who I was seeing for something else) and he suggested that I have a session with the accupunturist in the office. I really found that these sessions helped me alot. No more falling asleep at work. In fact when we went on a family trip to Europe I was the only one who wasn't jet lagged. Just make sure you let them know that you hae a liver problem and that you need something to help with the fatigue that it is causing. Buczak wrote: I had a biliary bi-pass and the right lobe of my liver removed in 3/06, at that time I was also diagnosed with PSC. I have found very little information about the disease. I'm interested to know if there is a diet that is helpful and if there is anything that helps fight the tiredness. Sue Cheap Talk? Check out Yahoo! Messenger's low PC-to-Phone call rates.

Sponsored LinkMortgage rates near 39yr lows. $310,000 Mortgage for $999/mo - Calculate new house payment

[Guest guest]

Pat, Thanks for the suggestion. My employer has been very supportive, but I think the cot in my office will not fly, ha!! As you know I have only been communicating with the group for less than a week, but already it has been so helpful. It is so nice to talk to a group that knows what I'm talking about. Have you been well since your transplant? Sue pat jones wrote: , Welcome to the group. I'm sorry that you find yourself here but I have found that the people here really support and help one another. I didn't know about this group until after my transplant but I'm happy I found it. I use to get so tired that I would fall asleep at my desk at work. I didn't know what to do about but and then one day I mentioned to my chiropractor (who I was seeing for something else) and he suggested that I have a session with the accupunturist in the office. I really found that these sessions helped me alot. No more falling asleep at work. In fact when we went on a family trip to Europe I was the only one who wasn't jet lagged. Just make sure you let them know that you hae a liver problem and that you need something to help with the fatigue that it is causing. Buczak <swbuczak> wrote: I had a biliary bi-pass and the right lobe of my liver removed in 3/06, at that time I was also diagnosed with PSC. I have found very little information about the disease. I'm interested to know if there is a diet that is helpful and if there is anything that helps fight the tiredness. Sue Cheap Talk? Check out Yahoo! Messenger's low PC-to-Phone call rates. Sponsored LinkMortgage rates near 39yr lows. $310,000 Mortgage for $999/mo - Calculate new house payment

Sponsored LinkMortgage rates near 39yr lows. $420,000 Mortgage for $1,399/mo - Calculate new house payment

[Guest guest]

Pat, Thanks for the suggestion. My employer has been very supportive, but I think the cot in my office will not fly, ha!! As you know I have only been communicating with the group for less than a week, but already it has been so helpful. It is so nice to talk to a group that knows what I'm talking about. Have you been well since your transplant? Sue pat jones wrote: , Welcome to the group. I'm sorry that you find yourself here but I have found that the people here really support and help one another. I didn't know about this group until after my transplant but I'm happy I found it. I use to get so tired that I would fall asleep at my desk at work. I didn't know what to do about but and then one day I mentioned to my chiropractor (who I was seeing for something else) and he suggested that I have a session with the accupunturist in the office. I really found that these sessions helped me alot. No more falling asleep at work. In fact when we went on a family trip to Europe I was the only one who wasn't jet lagged. Just make sure you let them know that you hae a liver problem and that you need something to help with the fatigue that it is causing. Buczak <swbuczak> wrote: I had a biliary bi-pass and the right lobe of my liver removed in 3/06, at that time I was also diagnosed with PSC. I have found very little information about the disease. I'm interested to know if there is a diet that is helpful and if there is anything that helps fight the tiredness. Sue Cheap Talk? Check out Yahoo! Messenger's low PC-to-Phone call rates. Sponsored LinkMortgage rates near 39yr lows. $310,000 Mortgage for $999/mo - Calculate new house payment

Sponsored LinkMortgage rates near 39yr lows. $420,000 Mortgage for $1,399/mo - Calculate new house payment