Re: PSC

[Guest guest]

Janice,

Many of us take Wellbutrin (or it's generic) for fatigue. Wellbutrin is actually an antidepressant, but it noted to help with fatigue so it is often prescribed for PSC patients (as well as MS patients, etc.) that are dealing with overwhelming fatigue. I began taking it a few months ago and have clearly benefited from it. I would suggest that your husband check with his doc.

Regarding the swelling in the belly and legs...I also recommend that he speak with his doctor about that. It may be necessary for him to get on a fluid pill that will help reduce the fluid buildup. If the fluid retention continues and gets bad enough they may need to draw fluid off of his abdomen. I'm certainly not trying to scare either of you, it's just that it is easier and SAFER to take the medication to minimize the swelling.

Good luck to both of you!

(MO)PSC & UC '84, chronic pancreatitis '97, listed for tx 06/05for details see www.caringbridge.org/visit/melaniejs

[Guest guest]

Hi Janice;

Welcome! It is really difficult to predict how rapidly (or slowly)

the disease will progress in any one PSC patient. Specialists at

Mayo Clinic who have been studying this disease for many years have

developed some models which try to assess how much " at risk "

individual patients are based on several variables. The variables

used in the " Revised Mayo Risk Score for PSC " include age,

bilirubin, serum albumin, alanine aminotransferase (ALT) level and

whether or not the patient has had variceal bleeding:

Mayo Clin Proc. 2000 Jul;75(7):688-94.

A revised natural history model for primary sclerosing cholangitis.

Kim WR, Therneau TM, Wiesner RH, Poterucha JJ, Benson JT, Malinchoc

M, LaRusso NF, Lindor KD, Dickson ER.

Division of Gastroenterology and Hepatology, Mayo Clinic, Rochester,

Minn. 55905, USA.

OBJECTIVE: To describe a natural history model for primary

sclerosing cholangitis (PSC) that is based on routine clinical

findings and test results and eliminates the need for liver biopsy.

PATIENTS AND METHODS: Using the proportional hazards analysis,

we created a survival model based on 405 patients with PSC from 5

clinical centers. Independent validation of the model was undertaken

by applying it to 124 patients who were not included in the model

creation. RESULTS: Based on the multivariate analysis of 405

patients, a risk score was defined by the following formula: R =

0.03 (age [y]) + 0.54 loge (bilirubin [mg/dL]) + 0.54 loge

(aspartate aminotransferase [u/L]) + 1.24 (variceal bleeding [0/1]) -

0.84 (albumin [g/dL]). The risk score was used to obtain survival

estimates up to 4 years of follow-up. Application of this model to

an independent group of 124 patients showed good correlation between

estimated and actual survival. CONCLUSIONS: A new model to estimate

patient survival in PSC includes more reproducible variables (age,

bilirubin, albumin, aspartate aminotransferase, and history of

variceal bleeding), has accuracy comparable to previous models, and

obviates the need for a liver biopsy. PMID: 1090738.

A Mayo Risk Score Calculator is available at:

http://www.psc-literature.org/mrscalc.htm

Additional important variables that determine patient risk are

international normalized ratio (INR) which is a measure of blood

clotting ability, and kidney function (e.g. serum creatinine). Serum

creatinine, bilirubin and INR determine the " MELD " score which is

used to try to quantify a patient's risk of dying while waiting for

a liver transplant.

http://www.psc-literature.org/meldcalc.htm

This score is not perfect, and patients at particularly high risk

seem to be those with ascites and low serum sodium.

Some patients who have frequent bouts of cholangitis often benefit

from periodic ERCP's to dilate bile-duct strictures. I don't think

that there are any hard and fast rules concerning " how rapid does

the disease start to progress after you start having bouts with

cholangitis " ... I think this depends greatly on what is done to

open up accessible strictures, and how well bacterial (and fungal)

infections are controlled.

Wait times for a transplant vary greatly in different parts of the

country, but within each region wait times depend upon MELD score.

I'll let others in the group comment on this and living donor

transplants. Several members of this group have had living donor

transplants.

Best regards,

Dave

(father of (21); PSC 07/03; UC 08/03)

[Guest guest]

Hi Janice;

Welcome! It is really difficult to predict how rapidly (or slowly)

the disease will progress in any one PSC patient. Specialists at

Mayo Clinic who have been studying this disease for many years have

developed some models which try to assess how much " at risk "

individual patients are based on several variables. The variables

used in the " Revised Mayo Risk Score for PSC " include age,

bilirubin, serum albumin, alanine aminotransferase (ALT) level and

whether or not the patient has had variceal bleeding:

Mayo Clin Proc. 2000 Jul;75(7):688-94.

A revised natural history model for primary sclerosing cholangitis.

Kim WR, Therneau TM, Wiesner RH, Poterucha JJ, Benson JT, Malinchoc

M, LaRusso NF, Lindor KD, Dickson ER.

Division of Gastroenterology and Hepatology, Mayo Clinic, Rochester,

Minn. 55905, USA.

OBJECTIVE: To describe a natural history model for primary

sclerosing cholangitis (PSC) that is based on routine clinical

findings and test results and eliminates the need for liver biopsy.

PATIENTS AND METHODS: Using the proportional hazards analysis,

we created a survival model based on 405 patients with PSC from 5

clinical centers. Independent validation of the model was undertaken

by applying it to 124 patients who were not included in the model

creation. RESULTS: Based on the multivariate analysis of 405

patients, a risk score was defined by the following formula: R =

0.03 (age [y]) + 0.54 loge (bilirubin [mg/dL]) + 0.54 loge

(aspartate aminotransferase [u/L]) + 1.24 (variceal bleeding [0/1]) -

0.84 (albumin [g/dL]). The risk score was used to obtain survival

estimates up to 4 years of follow-up. Application of this model to

an independent group of 124 patients showed good correlation between

estimated and actual survival. CONCLUSIONS: A new model to estimate

patient survival in PSC includes more reproducible variables (age,

bilirubin, albumin, aspartate aminotransferase, and history of

variceal bleeding), has accuracy comparable to previous models, and

obviates the need for a liver biopsy. PMID: 1090738.

A Mayo Risk Score Calculator is available at:

http://www.psc-literature.org/mrscalc.htm

Additional important variables that determine patient risk are

international normalized ratio (INR) which is a measure of blood

clotting ability, and kidney function (e.g. serum creatinine). Serum

creatinine, bilirubin and INR determine the " MELD " score which is

used to try to quantify a patient's risk of dying while waiting for

a liver transplant.

http://www.psc-literature.org/meldcalc.htm

This score is not perfect, and patients at particularly high risk

seem to be those with ascites and low serum sodium.

Some patients who have frequent bouts of cholangitis often benefit

from periodic ERCP's to dilate bile-duct strictures. I don't think

that there are any hard and fast rules concerning " how rapid does

the disease start to progress after you start having bouts with

cholangitis " ... I think this depends greatly on what is done to

open up accessible strictures, and how well bacterial (and fungal)

infections are controlled.

Wait times for a transplant vary greatly in different parts of the

country, but within each region wait times depend upon MELD score.

I'll let others in the group comment on this and living donor

transplants. Several members of this group have had living donor

transplants.

Best regards,

Dave

(father of (21); PSC 07/03; UC 08/03)

[Guest guest]

Hi Janice;

Welcome! It is really difficult to predict how rapidly (or slowly)

the disease will progress in any one PSC patient. Specialists at

Mayo Clinic who have been studying this disease for many years have

developed some models which try to assess how much " at risk "

individual patients are based on several variables. The variables

used in the " Revised Mayo Risk Score for PSC " include age,

bilirubin, serum albumin, alanine aminotransferase (ALT) level and

whether or not the patient has had variceal bleeding:

Mayo Clin Proc. 2000 Jul;75(7):688-94.

A revised natural history model for primary sclerosing cholangitis.

Kim WR, Therneau TM, Wiesner RH, Poterucha JJ, Benson JT, Malinchoc

M, LaRusso NF, Lindor KD, Dickson ER.

Division of Gastroenterology and Hepatology, Mayo Clinic, Rochester,

Minn. 55905, USA.

OBJECTIVE: To describe a natural history model for primary

sclerosing cholangitis (PSC) that is based on routine clinical

findings and test results and eliminates the need for liver biopsy.

PATIENTS AND METHODS: Using the proportional hazards analysis,

we created a survival model based on 405 patients with PSC from 5

clinical centers. Independent validation of the model was undertaken

by applying it to 124 patients who were not included in the model

creation. RESULTS: Based on the multivariate analysis of 405

patients, a risk score was defined by the following formula: R =

0.03 (age [y]) + 0.54 loge (bilirubin [mg/dL]) + 0.54 loge

(aspartate aminotransferase [u/L]) + 1.24 (variceal bleeding [0/1]) -

0.84 (albumin [g/dL]). The risk score was used to obtain survival

estimates up to 4 years of follow-up. Application of this model to

an independent group of 124 patients showed good correlation between

estimated and actual survival. CONCLUSIONS: A new model to estimate

patient survival in PSC includes more reproducible variables (age,

bilirubin, albumin, aspartate aminotransferase, and history of

variceal bleeding), has accuracy comparable to previous models, and

obviates the need for a liver biopsy. PMID: 1090738.

A Mayo Risk Score Calculator is available at:

http://www.psc-literature.org/mrscalc.htm

Additional important variables that determine patient risk are

international normalized ratio (INR) which is a measure of blood

clotting ability, and kidney function (e.g. serum creatinine). Serum

creatinine, bilirubin and INR determine the " MELD " score which is

used to try to quantify a patient's risk of dying while waiting for

a liver transplant.

http://www.psc-literature.org/meldcalc.htm

This score is not perfect, and patients at particularly high risk

seem to be those with ascites and low serum sodium.

Some patients who have frequent bouts of cholangitis often benefit

from periodic ERCP's to dilate bile-duct strictures. I don't think

that there are any hard and fast rules concerning " how rapid does

the disease start to progress after you start having bouts with

cholangitis " ... I think this depends greatly on what is done to

open up accessible strictures, and how well bacterial (and fungal)

infections are controlled.

Wait times for a transplant vary greatly in different parts of the

country, but within each region wait times depend upon MELD score.

I'll let others in the group comment on this and living donor

transplants. Several members of this group have had living donor

transplants.

Best regards,

Dave

(father of (21); PSC 07/03; UC 08/03)

[Guest guest]

Janice my son had a living donor 18 months ago from me and has gone back to college feeling like a new person. We were done at Lahey in Boston. MartiIma Winner wrote:

[Guest guest]

Janice my son had a living donor 18 months ago from me and has gone back to college feeling like a new person. We were done at Lahey in Boston. MartiIma Winner wrote:

[Guest guest]

Janice,

Well, your husband picked two rare disorders, but tell

him he's not alone. I also have both PSC and Factor V

Lieden.

I have always suffered from phantom pains for years

from the factor V, but have pretty much disappeared

since I started taking high doses of ursodiol. I bleed

real well if I nick myself. Must be a blood thinner. I

never really suffered that bad from Factor V anyway.

My mother is more chronic. She has been hospitalized a

few times and her blood is monitored every two weeks

where they constantly change her from heperin to

cumiden depending on the results.

My brother is also positive, but shows no symptoms.

Another brother is negative. Factor V is genetic and

usually shown in siblings. The rest of your family may

want to get tested as well.

Don't forget to tell the doctors about his Factor V

and they will use Teds (compression stockings) during

his procedures and a small dose of hepperin to prevent

clotting. Some have no idea what it is, most

hepotologists know though.

The depression is harder to resist. I still haven't

followed through and actually called the counselor

that my Healthpartners Case Manager suggested. I guess

that they have people that specialize in organ

transplants. I just try really hard to keep it

together.

The fatigue, pain and jaundice are harder to deal

with. I try to stay away from the painkillers, but

sometimes there just isn't a choice. Just got up from

a nap actually. Sometimes the pills get you even more

depressed.

Whenever I start feeling down I just remember that so

many others out there are much worse than I am. They

are in our prayers. If they can do it and have such a

positive outlook on life, so can I.

Luckily I have a new baby to look forward to in 5

weeks and a loving wife that is my rock and support

base/counselor. I couldn't handle it without her.

I also learn quite a bit from this forum and it helps

knowing your not alone. There are some pretty smart

and very strong people on here. It is definately a

support group.

in Minnesota

PSC 2006, Factor V Lieden 2002

__________________________________________________

[Guest guest]

Janice,

Well, your husband picked two rare disorders, but tell

him he's not alone. I also have both PSC and Factor V

Lieden.

I have always suffered from phantom pains for years

from the factor V, but have pretty much disappeared

since I started taking high doses of ursodiol. I bleed

real well if I nick myself. Must be a blood thinner. I

never really suffered that bad from Factor V anyway.

My mother is more chronic. She has been hospitalized a

few times and her blood is monitored every two weeks

where they constantly change her from heperin to

cumiden depending on the results.

My brother is also positive, but shows no symptoms.

Another brother is negative. Factor V is genetic and

usually shown in siblings. The rest of your family may

want to get tested as well.

Don't forget to tell the doctors about his Factor V

and they will use Teds (compression stockings) during

his procedures and a small dose of hepperin to prevent

clotting. Some have no idea what it is, most

hepotologists know though.

The depression is harder to resist. I still haven't

followed through and actually called the counselor

that my Healthpartners Case Manager suggested. I guess

that they have people that specialize in organ

transplants. I just try really hard to keep it

together.

The fatigue, pain and jaundice are harder to deal

with. I try to stay away from the painkillers, but

sometimes there just isn't a choice. Just got up from

a nap actually. Sometimes the pills get you even more

depressed.

Whenever I start feeling down I just remember that so

many others out there are much worse than I am. They

are in our prayers. If they can do it and have such a

positive outlook on life, so can I.

Luckily I have a new baby to look forward to in 5

weeks and a loving wife that is my rock and support

base/counselor. I couldn't handle it without her.

I also learn quite a bit from this forum and it helps

knowing your not alone. There are some pretty smart

and very strong people on here. It is definately a

support group.

in Minnesota

PSC 2006, Factor V Lieden 2002

__________________________________________________

[Guest guest]

Janice,

Well, your husband picked two rare disorders, but tell

him he's not alone. I also have both PSC and Factor V

Lieden.

I have always suffered from phantom pains for years

from the factor V, but have pretty much disappeared

since I started taking high doses of ursodiol. I bleed

real well if I nick myself. Must be a blood thinner. I

never really suffered that bad from Factor V anyway.

My mother is more chronic. She has been hospitalized a

few times and her blood is monitored every two weeks

where they constantly change her from heperin to

cumiden depending on the results.

My brother is also positive, but shows no symptoms.

Another brother is negative. Factor V is genetic and

usually shown in siblings. The rest of your family may

want to get tested as well.

Don't forget to tell the doctors about his Factor V

and they will use Teds (compression stockings) during

his procedures and a small dose of hepperin to prevent

clotting. Some have no idea what it is, most

hepotologists know though.

The depression is harder to resist. I still haven't

followed through and actually called the counselor

that my Healthpartners Case Manager suggested. I guess

that they have people that specialize in organ

transplants. I just try really hard to keep it

together.

The fatigue, pain and jaundice are harder to deal

with. I try to stay away from the painkillers, but

sometimes there just isn't a choice. Just got up from

a nap actually. Sometimes the pills get you even more

depressed.

Whenever I start feeling down I just remember that so

many others out there are much worse than I am. They

are in our prayers. If they can do it and have such a

positive outlook on life, so can I.

Luckily I have a new baby to look forward to in 5

weeks and a loving wife that is my rock and support

base/counselor. I couldn't handle it without her.

I also learn quite a bit from this forum and it helps

knowing your not alone. There are some pretty smart

and very strong people on here. It is definately a

support group.

in Minnesota

PSC 2006, Factor V Lieden 2002

__________________________________________________

[Guest guest]

Hi , I really appreciated your reply. My husband has been pretty lucky so far in not having much pain in the liver and the jaundice disappeared after the initial diagnosis and his first ERCP. He has several short-term jaundice incidents, but they usually cleared up rather quickly. Thank god, he has no itching at this time. He did have a mild case of itching, only in the shoulder area, a while back but it also went away reasonably quick. The two cases of cholangitis were in July of 2005 and again this year in June. Both times he ran a fever and had chills like he was battling the flu. Cipro cleared the infection both times and saved him from a hospital stay. What dosage of urso are you taking? My husband takes 250mg 8 times a day and it seems to be working well for him. However, if you read the side effects of the drug, depression and

fatigue are two of them. I am extremely concerned for my husband since he has not been himself for almost a year now. Of course, he was recently diagnosed with the Factor V Leiden Mutation and the elevated homocysteine levels and had to have his vein stripped in his left leg due to blood clots! We do not know much about family history concerning his blood disorders or the liver disease, but we do know his mom was on coumadin for years. When I questioned her years ago about the coumadin, she simply said she took it because her blood was too thick! I don't think they really knew what her problem was at the time. We are not sure if anyone in the family had liver disease or specifically PSC. We have two children, a 25 year old daughter and 21 year old son, and am concerned about the genetic possibilities. The hepatologist does not feel it is time for them to be tested since the disease usually does not surface

until you are 40+ years old, but they plan to have bloodwork done soon to see what their liver profile shows and also to check to see if they have the Factor V condition. , you didn't say how old you are! My husband just turned 50 and, from what we can figure out, he has probably had the disease for at least 15 years. How long were you feeling ill prior to the diagnosis of PSC and are you on a transplant list yet? The doctors do not feel that my husband qualifies at this time, which is a good thing, yet the cholangitis attacks prove that the disease is starting to progress. Both of my kids want to be tested to see if they match in case he needs a living donor, but again the doctor feels it is premature. You are absolutely right when you say that there are so many others out there worse off than you. I continually tell my husband that the cup is half full and he laughs at

me! He has always been a bit of a pessimist and I try to keep him focused on the positive. I think we all need to count our blessings instead of our misfortunes. I love my husband very much and plan on doing everything in my power to see him through this health crisis in a very positive way. Good nutrition, routine ERCP's, medication, exercise, up-to-date literature and the love of your families will get you guys through this! Please keep in touch and let me know how you are feeling. Congrats on the new baby! Janice Sny wrote: Janice,Well, your husband picked two rare disorders, but tellhim he's not alone. I also have both PSC and Factor VLieden.I have always suffered from phantom pains for yearsfrom the factor V, but have pretty much disappearedsince I started taking high doses of ursodiol. I bleedreal well if I nick myself. Must be a blood thinner. Inever really suffered that bad from Factor V anyway.My mother is more chronic. She has been hospitalized afew times and her blood is monitored every two weekswhere they constantly change her from heperin tocumiden depending on the results.My brother is also positive, but shows no symptoms.Another brother is negative. Factor V is genetic andusually shown in siblings. The rest of your family maywant to get tested as

well.Don't forget to tell the doctors about his Factor Vand they will use Teds (compression stockings) duringhis procedures and a small dose of hepperin to preventclotting. Some have no idea what it is, mosthepotologists know though.The depression is harder to resist. I still haven'tfollowed through and actually called the counselorthat my Healthpartners Case Manager suggested. I guessthat they have people that specialize in organtransplants. I just try really hard to keep ittogether.The fatigue, pain and jaundice are harder to dealwith. I try to stay away from the painkillers, butsometimes there just isn't a choice. Just got up froma nap actually. Sometimes the pills get you even moredepressed.Whenever I start feeling down I just remember that somany others out there are much worse than I am. Theyare in our prayers. If they can do it and have such apositive outlook on life, so

can I.Luckily I have a new baby to look forward to in 5weeks and a loving wife that is my rock and supportbase/counselor. I couldn't handle it without her. I also learn quite a bit from this forum and it helpsknowing your not alone. There are some pretty smartand very strong people on here. It is definately asupport group. in MinnesotaPSC 2006, Factor V Lieden 2002__________________________________________________

[Guest guest]

Hi , I really appreciated your reply. My husband has been pretty lucky so far in not having much pain in the liver and the jaundice disappeared after the initial diagnosis and his first ERCP. He has several short-term jaundice incidents, but they usually cleared up rather quickly. Thank god, he has no itching at this time. He did have a mild case of itching, only in the shoulder area, a while back but it also went away reasonably quick. The two cases of cholangitis were in July of 2005 and again this year in June. Both times he ran a fever and had chills like he was battling the flu. Cipro cleared the infection both times and saved him from a hospital stay. What dosage of urso are you taking? My husband takes 250mg 8 times a day and it seems to be working well for him. However, if you read the side effects of the drug, depression and

fatigue are two of them. I am extremely concerned for my husband since he has not been himself for almost a year now. Of course, he was recently diagnosed with the Factor V Leiden Mutation and the elevated homocysteine levels and had to have his vein stripped in his left leg due to blood clots! We do not know much about family history concerning his blood disorders or the liver disease, but we do know his mom was on coumadin for years. When I questioned her years ago about the coumadin, she simply said she took it because her blood was too thick! I don't think they really knew what her problem was at the time. We are not sure if anyone in the family had liver disease or specifically PSC. We have two children, a 25 year old daughter and 21 year old son, and am concerned about the genetic possibilities. The hepatologist does not feel it is time for them to be tested since the disease usually does not surface

until you are 40+ years old, but they plan to have bloodwork done soon to see what their liver profile shows and also to check to see if they have the Factor V condition. , you didn't say how old you are! My husband just turned 50 and, from what we can figure out, he has probably had the disease for at least 15 years. How long were you feeling ill prior to the diagnosis of PSC and are you on a transplant list yet? The doctors do not feel that my husband qualifies at this time, which is a good thing, yet the cholangitis attacks prove that the disease is starting to progress. Both of my kids want to be tested to see if they match in case he needs a living donor, but again the doctor feels it is premature. You are absolutely right when you say that there are so many others out there worse off than you. I continually tell my husband that the cup is half full and he laughs at

me! He has always been a bit of a pessimist and I try to keep him focused on the positive. I think we all need to count our blessings instead of our misfortunes. I love my husband very much and plan on doing everything in my power to see him through this health crisis in a very positive way. Good nutrition, routine ERCP's, medication, exercise, up-to-date literature and the love of your families will get you guys through this! Please keep in touch and let me know how you are feeling. Congrats on the new baby! Janice Sny wrote: Janice,Well, your husband picked two rare disorders, but tellhim he's not alone. I also have both PSC and Factor VLieden.I have always suffered from phantom pains for yearsfrom the factor V, but have pretty much disappearedsince I started taking high doses of ursodiol. I bleedreal well if I nick myself. Must be a blood thinner. Inever really suffered that bad from Factor V anyway.My mother is more chronic. She has been hospitalized afew times and her blood is monitored every two weekswhere they constantly change her from heperin tocumiden depending on the results.My brother is also positive, but shows no symptoms.Another brother is negative. Factor V is genetic andusually shown in siblings. The rest of your family maywant to get tested as

well.Don't forget to tell the doctors about his Factor Vand they will use Teds (compression stockings) duringhis procedures and a small dose of hepperin to preventclotting. Some have no idea what it is, mosthepotologists know though.The depression is harder to resist. I still haven'tfollowed through and actually called the counselorthat my Healthpartners Case Manager suggested. I guessthat they have people that specialize in organtransplants. I just try really hard to keep ittogether.The fatigue, pain and jaundice are harder to dealwith. I try to stay away from the painkillers, butsometimes there just isn't a choice. Just got up froma nap actually. Sometimes the pills get you even moredepressed.Whenever I start feeling down I just remember that somany others out there are much worse than I am. Theyare in our prayers. If they can do it and have such apositive outlook on life, so

can I.Luckily I have a new baby to look forward to in 5weeks and a loving wife that is my rock and supportbase/counselor. I couldn't handle it without her. I also learn quite a bit from this forum and it helpsknowing your not alone. There are some pretty smartand very strong people on here. It is definately asupport group. in MinnesotaPSC 2006, Factor V Lieden 2002__________________________________________________

[Guest guest]

Insurance paid for it all but we did jump through a lot of hoops to get it done. If you and the donor are not on the same plan then the recipent's insurance is supposed to cover everything. Since this was my son, his insurance was mine. I feel as if I never had surgery. I went back to work after 4 months and I work at least 12 hours a day running an ICU. The out of pocket stuff was living in a hotel for 6 weeks post op. That's where fund raisers are real important. Marti Ima Winner wrote: Marti, Did insurance pay for the surgery or was it out of pocket? How are you feeling? Best of health to the both of you! JaniceMarti wrote: Janice my son had a living donor 18 months ago from me and has gone back to college feeling like a new person. We were done at Lahey in Boston. MartiIma Winner <creativemind1020> wrote:

[Guest guest]

Insurance paid for it all but we did jump through a lot of hoops to get it done. If you and the donor are not on the same plan then the recipent's insurance is supposed to cover everything. Since this was my son, his insurance was mine. I feel as if I never had surgery. I went back to work after 4 months and I work at least 12 hours a day running an ICU. The out of pocket stuff was living in a hotel for 6 weeks post op. That's where fund raisers are real important. Marti Ima Winner wrote: Marti, Did insurance pay for the surgery or was it out of pocket? How are you feeling? Best of health to the both of you! JaniceMarti wrote: Janice my son had a living donor 18 months ago from me and has gone back to college feeling like a new person. We were done at Lahey in Boston. MartiIma Winner <creativemind1020> wrote:

[Guest guest]

Excellent! This is good info to know. I hope it never has to happen, but it is good to be prepared just in case. I have been putting aside some cash just in case he needs a transplant somewhere in the future. Stay healthy! ~~~ Jan ~~~

Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

[Guest guest]

Hi Janice,

I am 39 years old and my hepotologist probably says I

have had it for years too. My gallbladder removal he

says was related and that happened in 2002. Was only

diagnosed with PSC in January of this year. At first I

just thought I had bad indigestion and chowed Rolaids

constantly.

Was misdiagnosed for a few years. First they thought

it was NASH (non-alchololic strep hepetitis). A few

liver biopsys, MRI's, Cat Scans later and now we know.

Nope, not listed yet. Only a 7 on the meld score, but

suffering many cholangitis attacks and they have me on

3 different antibiotics that rotate monthly to fight

constant billary infections. I take 2 300 MG Ursidol 3

times a day. Not sick enough for the list just yet.

Just waiting.

Had my first transplant meeting at the U of M last

month and going back in October. Feel like I am going

downhill quickly though.

Just had another ERCP a couple weeks ago and since

Thursday have been getting progressively more

jaundiced, fevered, fatigue, side pain. Only went

through the itching for a couple months. Increasing

the Urso definately helped out. After the first ERCP

people called me an Umpa Lumpa due to my skin color.

Now the transplant team says my new stent may be

plugged. After only two weeks. They cleaned out some

clogs, removed a few stones, and changed to a bigger

stent. Don't really want to go back for another ERCP

so soon.

They did make it perfectly clear that you have to

communicate with the transplant team if you notice any

changes to your health such as bad fatigue and fever

(more than usual). I never wanted to go in and didn't

go in last time til my temp was over 103. Stayed

overnight. The Doc said " don't do this again " . " No

matter what, let us know. "

They send me to the local clinic for about 4 different

liver (blood) tests and request the results " Stat "

when it gets bad. Went again today. Blood tests are

standing orders every 3 weeks. The pokes don't even

bother me anymore. Just used to it. Just get my IV in

under 5 tries, OK? Must have been a student.

Don't freak out over the Factor V with your family.

They probably already monitor the clotting factors

regularly anyway. Most people never even know they

have Factor V and never show any ill effects. Aspirin

is usually recommended. Your husband and my mom are

definately exceptions to the rule. My family wasn't

tested until mid-thirties. The shot in the belly

catches you by suprise though. You are 10 times more

likely to suffer a clot from being imobile than anyone

else in the hospital so the hepprin isn't a choice

(sorry for the spelling, I am new too).

Most times I have read that PSC is not genetic and

something that just happens and nobody knows why?

My transplant team is awesome and I am a phone call

away from one of the best in the world. I am truly

blessed.

Keep the faith.

in Minnesota

PSC 2006, Factor V 2002

__________________________________________________

[Guest guest]

Hi Janice,

I am 39 years old and my hepotologist probably says I

have had it for years too. My gallbladder removal he

says was related and that happened in 2002. Was only

diagnosed with PSC in January of this year. At first I

just thought I had bad indigestion and chowed Rolaids

constantly.

Was misdiagnosed for a few years. First they thought

it was NASH (non-alchololic strep hepetitis). A few

liver biopsys, MRI's, Cat Scans later and now we know.

Nope, not listed yet. Only a 7 on the meld score, but

suffering many cholangitis attacks and they have me on

3 different antibiotics that rotate monthly to fight

constant billary infections. I take 2 300 MG Ursidol 3

times a day. Not sick enough for the list just yet.

Just waiting.

Had my first transplant meeting at the U of M last

month and going back in October. Feel like I am going

downhill quickly though.

Just had another ERCP a couple weeks ago and since

Thursday have been getting progressively more

jaundiced, fevered, fatigue, side pain. Only went

through the itching for a couple months. Increasing

the Urso definately helped out. After the first ERCP

people called me an Umpa Lumpa due to my skin color.

Now the transplant team says my new stent may be

plugged. After only two weeks. They cleaned out some

clogs, removed a few stones, and changed to a bigger

stent. Don't really want to go back for another ERCP

so soon.

They did make it perfectly clear that you have to

communicate with the transplant team if you notice any

changes to your health such as bad fatigue and fever

(more than usual). I never wanted to go in and didn't

go in last time til my temp was over 103. Stayed

overnight. The Doc said " don't do this again " . " No

matter what, let us know. "

They send me to the local clinic for about 4 different

liver (blood) tests and request the results " Stat "

when it gets bad. Went again today. Blood tests are

standing orders every 3 weeks. The pokes don't even

bother me anymore. Just used to it. Just get my IV in

under 5 tries, OK? Must have been a student.

Don't freak out over the Factor V with your family.

They probably already monitor the clotting factors

regularly anyway. Most people never even know they

have Factor V and never show any ill effects. Aspirin

is usually recommended. Your husband and my mom are

definately exceptions to the rule. My family wasn't

tested until mid-thirties. The shot in the belly

catches you by suprise though. You are 10 times more

likely to suffer a clot from being imobile than anyone

else in the hospital so the hepprin isn't a choice

(sorry for the spelling, I am new too).

Most times I have read that PSC is not genetic and

something that just happens and nobody knows why?

My transplant team is awesome and I am a phone call

away from one of the best in the world. I am truly

blessed.

Keep the faith.

in Minnesota

PSC 2006, Factor V 2002

__________________________________________________

[Guest guest]

Hi Janice,

I am 39 years old and my hepotologist probably says I

have had it for years too. My gallbladder removal he

says was related and that happened in 2002. Was only

diagnosed with PSC in January of this year. At first I

just thought I had bad indigestion and chowed Rolaids

constantly.

Was misdiagnosed for a few years. First they thought

it was NASH (non-alchololic strep hepetitis). A few

liver biopsys, MRI's, Cat Scans later and now we know.

Nope, not listed yet. Only a 7 on the meld score, but

suffering many cholangitis attacks and they have me on

3 different antibiotics that rotate monthly to fight

constant billary infections. I take 2 300 MG Ursidol 3

times a day. Not sick enough for the list just yet.

Just waiting.

Had my first transplant meeting at the U of M last

month and going back in October. Feel like I am going

downhill quickly though.

Just had another ERCP a couple weeks ago and since

Thursday have been getting progressively more

jaundiced, fevered, fatigue, side pain. Only went

through the itching for a couple months. Increasing

the Urso definately helped out. After the first ERCP

people called me an Umpa Lumpa due to my skin color.

Now the transplant team says my new stent may be

plugged. After only two weeks. They cleaned out some

clogs, removed a few stones, and changed to a bigger

stent. Don't really want to go back for another ERCP

so soon.

They did make it perfectly clear that you have to

communicate with the transplant team if you notice any

changes to your health such as bad fatigue and fever

(more than usual). I never wanted to go in and didn't

go in last time til my temp was over 103. Stayed

overnight. The Doc said " don't do this again " . " No

matter what, let us know. "

They send me to the local clinic for about 4 different

liver (blood) tests and request the results " Stat "

when it gets bad. Went again today. Blood tests are

standing orders every 3 weeks. The pokes don't even

bother me anymore. Just used to it. Just get my IV in

under 5 tries, OK? Must have been a student.

Don't freak out over the Factor V with your family.

They probably already monitor the clotting factors

regularly anyway. Most people never even know they

have Factor V and never show any ill effects. Aspirin

is usually recommended. Your husband and my mom are

definately exceptions to the rule. My family wasn't

tested until mid-thirties. The shot in the belly

catches you by suprise though. You are 10 times more

likely to suffer a clot from being imobile than anyone

else in the hospital so the hepprin isn't a choice

(sorry for the spelling, I am new too).

Most times I have read that PSC is not genetic and

something that just happens and nobody knows why?

My transplant team is awesome and I am a phone call

away from one of the best in the world. I am truly

blessed.

Keep the faith.

in Minnesota

PSC 2006, Factor V 2002

__________________________________________________

[Guest guest]

Many of us manage quite well with the disease and you have found the

> right place for support/suggestions/research information, etc.

I echo your answer Penny, well said. Please Prichsy do read up on

the subject and do ask questions there are so many caring helpful

people on this message board.

I was in an outpatients clinic for a colonoscopy 2 days ago - to

check if I like my 2 sibling I have colitus - they had dramatic

emergency trips to the hospital to diagnose theirs, I have no

symptoms, but awaiting for the report to see I can join Martha and

others with colitus with no symptoms!!

I talk to anyone, anytime, anywhere and was chatting to the bloke

lined up at the outpatients before me who was in to swallow a camera

for reflux. I told him about me and when I said PSC, he said " I

have read about that " , because when he went to see the specialist 2

weeks ago about his reflux he had LFT test, which came back very

high numbers. The reflux is being dealt with first as he has no

other health problems, then his liver is next. We exchanged phone

numbers in case he is diagnosed with PSC in the future.

Best wishes from the bottom of the world in New Zealand

[Guest guest]

Many of us manage quite well with the disease and you have found the

> right place for support/suggestions/research information, etc.

I echo your answer Penny, well said. Please Prichsy do read up on

the subject and do ask questions there are so many caring helpful

people on this message board.

I was in an outpatients clinic for a colonoscopy 2 days ago - to

check if I like my 2 sibling I have colitus - they had dramatic

emergency trips to the hospital to diagnose theirs, I have no

symptoms, but awaiting for the report to see I can join Martha and

others with colitus with no symptoms!!

I talk to anyone, anytime, anywhere and was chatting to the bloke

lined up at the outpatients before me who was in to swallow a camera

for reflux. I told him about me and when I said PSC, he said " I

have read about that " , because when he went to see the specialist 2

weeks ago about his reflux he had LFT test, which came back very

high numbers. The reflux is being dealt with first as he has no

other health problems, then his liver is next. We exchanged phone

numbers in case he is diagnosed with PSC in the future.

Best wishes from the bottom of the world in New Zealand

[Guest guest]

Many of us manage quite well with the disease and you have found the

> right place for support/suggestions/research information, etc.

I echo your answer Penny, well said. Please Prichsy do read up on

the subject and do ask questions there are so many caring helpful

people on this message board.

I was in an outpatients clinic for a colonoscopy 2 days ago - to

check if I like my 2 sibling I have colitus - they had dramatic

emergency trips to the hospital to diagnose theirs, I have no

symptoms, but awaiting for the report to see I can join Martha and

others with colitus with no symptoms!!

I talk to anyone, anytime, anywhere and was chatting to the bloke

lined up at the outpatients before me who was in to swallow a camera

for reflux. I told him about me and when I said PSC, he said " I

have read about that " , because when he went to see the specialist 2

weeks ago about his reflux he had LFT test, which came back very

high numbers. The reflux is being dealt with first as he has no

other health problems, then his liver is next. We exchanged phone

numbers in case he is diagnosed with PSC in the future.

Best wishes from the bottom of the world in New Zealand

[Guest guest]

prichsy wrote:

>Hi,

>Hubby has just been diagnosed with PSC and I am terrified.Does anyone

>know of any case of PSC in remission or PSC cured? Just so I can hope

>and pray...

>

>

I know all the info you get can be overwhelming and scary. The thing is

that while most of the PSC info out there may be technically correct, it

doesn't really reflect the extremely wide range of experiences and

outcomes that we've seen here. For instance I've had the disease since

at least '91 and still have my own liver and do reasonably well most of

the time. Others people's disease may progress more quickly or more

slowly. Some have transplants after a few years of the disease and do

very well, others don't need one for many years. It is a serious

disease, and it's not what anyone wished or hoped for, but it's

something that is possible to deal with and get through.

As for a cure, all the websites will tell you that there isn't any

(except liver transplant) and again they are probably technically

correct, but there is a lot of exciting research going on right now, and

I for one am hopeful that real progress toward treatment and possibly a

cure is being made. Stick around here and you'll be sure to hear more

about this!

So go ahead and hope and pray... those are probably two of the most

important things to do!

athan

[Guest guest]

prichsy wrote:

>Hi,

>Hubby has just been diagnosed with PSC and I am terrified.Does anyone

>know of any case of PSC in remission or PSC cured? Just so I can hope

>and pray...

>

>

I know all the info you get can be overwhelming and scary. The thing is

that while most of the PSC info out there may be technically correct, it

doesn't really reflect the extremely wide range of experiences and

outcomes that we've seen here. For instance I've had the disease since

at least '91 and still have my own liver and do reasonably well most of

the time. Others people's disease may progress more quickly or more

slowly. Some have transplants after a few years of the disease and do

very well, others don't need one for many years. It is a serious

disease, and it's not what anyone wished or hoped for, but it's

something that is possible to deal with and get through.

As for a cure, all the websites will tell you that there isn't any

(except liver transplant) and again they are probably technically

correct, but there is a lot of exciting research going on right now, and

I for one am hopeful that real progress toward treatment and possibly a

cure is being made. Stick around here and you'll be sure to hear more

about this!

So go ahead and hope and pray... those are probably two of the most

important things to do!

athan

[Guest guest]

prichsy wrote:

>Hi,

>Hubby has just been diagnosed with PSC and I am terrified.Does anyone

>know of any case of PSC in remission or PSC cured? Just so I can hope

>and pray...

>

>

I know all the info you get can be overwhelming and scary. The thing is

that while most of the PSC info out there may be technically correct, it

doesn't really reflect the extremely wide range of experiences and

outcomes that we've seen here. For instance I've had the disease since

at least '91 and still have my own liver and do reasonably well most of

the time. Others people's disease may progress more quickly or more

slowly. Some have transplants after a few years of the disease and do

very well, others don't need one for many years. It is a serious

disease, and it's not what anyone wished or hoped for, but it's

something that is possible to deal with and get through.

As for a cure, all the websites will tell you that there isn't any

(except liver transplant) and again they are probably technically

correct, but there is a lot of exciting research going on right now, and

I for one am hopeful that real progress toward treatment and possibly a

cure is being made. Stick around here and you'll be sure to hear more

about this!

So go ahead and hope and pray... those are probably two of the most

important things to do!

athan