Re: Can someone give me good news?

[Guest guest]

Tammy-Take a deep breathe! You have found an excellent group with a wealth of experience & knowledge that is readily available to you!I am sorry to hear of your husbands dx. Keep in mind that PSC affects everyone differently. We have members in this group that have lived 20+ years symptom free, other's 10+, some less. Your husband can live a very product life. The best defense for you is to learn. Learn what works for your husband, learn what works for your lifestyles. Have a doctor that you can communicate everything to! Having a doctor that you trust and will listen to you is worth it's weight in gold with this disease. Don't be afraid to ask questions, even if you are afraid of the answers. My brother was dx in his early 20's with PSC, with UC in his early teens. We were told he would need a transplant in about 6 years from dx of PSC, and with him he is right on track. We just went through eval testing.

There are members here that have only occasional flare ups, and lead very normal productive lives. PSC is a scary dx, but you are not alone. Ask questions, this group is an amazing resource.Best of luck to you & your husband.

Brother, , 30, UC & PSC

My husband's doctor says he's 99% sure that my husband (Chad) has PSC.

He is going for a liver biopsy on Wednesday. We are both 30 years

old. Chad is a K-9 police officer & very active in his job. It's

driving him crazy being on sick leave. Everything that I have read on

PSC suggests that a person will probably go into liver failure & need a

liver transplant within 10 years of being diagnosed. I'm not dealing

very well with that! Can someone give me some more positive news about

this disease before I have a complete nervous breakdown? Thanks. Tammy

[Guest guest]

Dear Tammy,Welcome to the group. I know what you are feeling as my 21 year old son was diagnosed in 2004. I would say that the biggest question mark I have is the time frame from diagnosis to transplant. No one knows. I was told the same as you.PSC Partners Seeking a Cure has a brochure that you might want to look at. Chad would find it a positive thing to see Olympic snowboarder Klug on the front winning a bronze medal after transplant from PSC.  Partners also has all our newsletters on line with lots of information to help you.The web site is www.pscpartners.org.Partners was born from this group and we are just about to have our 3rd conference in Denver this weekend.If you happen to be from CO. then I suggest you join us as you would find it so helpful.Has Chad already had an ERCP for diagnosis?On a positive note, many here are taking high dose Urso and fish oil to help.High dose Urso is in studies now.After gathering more information, talk to Chad's Dr. about treatment.Ask questions here.Lee mother of Bill On Apr 9, 2007, at 5:02 PM, zorro_tammy wrote Can someone give me some more positive news about this disease before I have a complete nervous breakdown? Thanks. Tammy

[Guest guest]

Dear Tammy,Welcome to the group. I know what you are feeling as my 21 year old son was diagnosed in 2004. I would say that the biggest question mark I have is the time frame from diagnosis to transplant. No one knows. I was told the same as you.PSC Partners Seeking a Cure has a brochure that you might want to look at. Chad would find it a positive thing to see Olympic snowboarder Klug on the front winning a bronze medal after transplant from PSC.  Partners also has all our newsletters on line with lots of information to help you.The web site is www.pscpartners.org.Partners was born from this group and we are just about to have our 3rd conference in Denver this weekend.If you happen to be from CO. then I suggest you join us as you would find it so helpful.Has Chad already had an ERCP for diagnosis?On a positive note, many here are taking high dose Urso and fish oil to help.High dose Urso is in studies now.After gathering more information, talk to Chad's Dr. about treatment.Ask questions here.Lee mother of Bill On Apr 9, 2007, at 5:02 PM, zorro_tammy wrote Can someone give me some more positive news about this disease before I have a complete nervous breakdown? Thanks. Tammy

[Guest guest]

Dear Tammy,Welcome to the group. I know what you are feeling as my 21 year old son was diagnosed in 2004. I would say that the biggest question mark I have is the time frame from diagnosis to transplant. No one knows. I was told the same as you.PSC Partners Seeking a Cure has a brochure that you might want to look at. Chad would find it a positive thing to see Olympic snowboarder Klug on the front winning a bronze medal after transplant from PSC.  Partners also has all our newsletters on line with lots of information to help you.The web site is www.pscpartners.org.Partners was born from this group and we are just about to have our 3rd conference in Denver this weekend.If you happen to be from CO. then I suggest you join us as you would find it so helpful.Has Chad already had an ERCP for diagnosis?On a positive note, many here are taking high dose Urso and fish oil to help.High dose Urso is in studies now.After gathering more information, talk to Chad's Dr. about treatment.Ask questions here.Lee mother of Bill On Apr 9, 2007, at 5:02 PM, zorro_tammy wrote Can someone give me some more positive news about this disease before I have a complete nervous breakdown? Thanks. Tammy

[Guest guest]

Lee Are you the one that lives in Delhi? Martileedeubert wrote: Dear Tammy, Welcome to the group. I know what you are feeling as my 21 year old son was diagnosed in 2004. I would say that the biggest question mark I have is the time frame from diagnosis to transplant. No one knows. I was told the same as you. PSC Partners Seeking a Cure has a brochure that you might want to look at. Chad would find it a positive thing to see

Olympic snowboarder Klug on the front winning a bronze medal after transplant from PSC. Partners also has all our newsletters on line with lots of information to help you. The web site is www.pscpartners.org. Partners was born from this group and we are just about to have our 3rd conference in Denver this weekend. If you happen to be from CO. then I suggest you join us as you would find it so helpful. Has Chad already had an ERCP for diagnosis? On a positive note, many here are taking high dose Urso and fish oil to help. High dose Urso is in studies now. After gathering more information, talk to Chad's Dr. about treatment. Ask questions here. Lee mother of Bill On Apr 9, 2007, at 5:02 PM, zorro_tammy wrote Can someone give me some more positive news about this disease before I have a complete nervous breakdown? Thanks. Tammy

Expecting? Get great news right away with email Auto-Check.Try the Yahoo! Mail Beta.

[Guest guest]

Lee Are you the one that lives in Delhi? Martileedeubert wrote: Dear Tammy, Welcome to the group. I know what you are feeling as my 21 year old son was diagnosed in 2004. I would say that the biggest question mark I have is the time frame from diagnosis to transplant. No one knows. I was told the same as you. PSC Partners Seeking a Cure has a brochure that you might want to look at. Chad would find it a positive thing to see

Olympic snowboarder Klug on the front winning a bronze medal after transplant from PSC. Partners also has all our newsletters on line with lots of information to help you. The web site is www.pscpartners.org. Partners was born from this group and we are just about to have our 3rd conference in Denver this weekend. If you happen to be from CO. then I suggest you join us as you would find it so helpful. Has Chad already had an ERCP for diagnosis? On a positive note, many here are taking high dose Urso and fish oil to help. High dose Urso is in studies now. After gathering more information, talk to Chad's Dr. about treatment. Ask questions here. Lee mother of Bill On Apr 9, 2007, at 5:02 PM, zorro_tammy wrote Can someone give me some more positive news about this disease before I have a complete nervous breakdown? Thanks. Tammy

Expecting? Get great news right away with email Auto-Check.Try the Yahoo! Mail Beta.

[Guest guest]

Lee Are you the one that lives in Delhi? Martileedeubert wrote: Dear Tammy, Welcome to the group. I know what you are feeling as my 21 year old son was diagnosed in 2004. I would say that the biggest question mark I have is the time frame from diagnosis to transplant. No one knows. I was told the same as you. PSC Partners Seeking a Cure has a brochure that you might want to look at. Chad would find it a positive thing to see

Olympic snowboarder Klug on the front winning a bronze medal after transplant from PSC. Partners also has all our newsletters on line with lots of information to help you. The web site is www.pscpartners.org. Partners was born from this group and we are just about to have our 3rd conference in Denver this weekend. If you happen to be from CO. then I suggest you join us as you would find it so helpful. Has Chad already had an ERCP for diagnosis? On a positive note, many here are taking high dose Urso and fish oil to help. High dose Urso is in studies now. After gathering more information, talk to Chad's Dr. about treatment. Ask questions here. Lee mother of Bill On Apr 9, 2007, at 5:02 PM, zorro_tammy wrote Can someone give me some more positive news about this disease before I have a complete nervous breakdown? Thanks. Tammy

Expecting? Get great news right away with email Auto-Check.Try the Yahoo! Mail Beta.

[Guest guest]

Tammy As you have been told, this is a disease that has its own timetable. Some people are fine for many many years before the disease gets them in trouble. The important things to know is to have a good relationship with your Dr and get good specialists. Know what your insurance covers and take careful notes whenever you have to speak with either the insurance company or a Dr. We have a looseleaf notebook that I started when our 21 year old was diagnosed at 11. 2 years ago he finally got his tx and is in college feeling great. I now want to kill him because he is acting like a normal 21 year old. Both you and your husband need to go on with your lives and be aware of the PSC but do not let it consume you. I made that mistake when was diagnosed and it almost killed me. Come to this group for info and support. We are always here. Martizorro_tammy wrote: My husband's doctor says he's 99% sure that my husband (Chad) has PSC. He is going for a liver biopsy on Wednesday. We are both 30 years old. Chad is a K-9 police officer & very active in his job. It's driving him crazy being on sick leave. Everything that I have read on PSC suggests that a person will probably go into liver failure & need a liver transplant within 10 years of being diagnosed. I'm not dealing very well with that! Can someone give me some more positive news about this disease before I have a complete nervous breakdown? Thanks.

Tammy

The fish are biting.

Get more visitors on your site using Yahoo! Search Marketing.

[Guest guest]

Tammy As you have been told, this is a disease that has its own timetable. Some people are fine for many many years before the disease gets them in trouble. The important things to know is to have a good relationship with your Dr and get good specialists. Know what your insurance covers and take careful notes whenever you have to speak with either the insurance company or a Dr. We have a looseleaf notebook that I started when our 21 year old was diagnosed at 11. 2 years ago he finally got his tx and is in college feeling great. I now want to kill him because he is acting like a normal 21 year old. Both you and your husband need to go on with your lives and be aware of the PSC but do not let it consume you. I made that mistake when was diagnosed and it almost killed me. Come to this group for info and support. We are always here. Martizorro_tammy wrote: My husband's doctor says he's 99% sure that my husband (Chad) has PSC. He is going for a liver biopsy on Wednesday. We are both 30 years old. Chad is a K-9 police officer & very active in his job. It's driving him crazy being on sick leave. Everything that I have read on PSC suggests that a person will probably go into liver failure & need a liver transplant within 10 years of being diagnosed. I'm not dealing very well with that! Can someone give me some more positive news about this disease before I have a complete nervous breakdown? Thanks.

Tammy

The fish are biting.

Get more visitors on your site using Yahoo! Search Marketing.

[Guest guest]

Tammy As you have been told, this is a disease that has its own timetable. Some people are fine for many many years before the disease gets them in trouble. The important things to know is to have a good relationship with your Dr and get good specialists. Know what your insurance covers and take careful notes whenever you have to speak with either the insurance company or a Dr. We have a looseleaf notebook that I started when our 21 year old was diagnosed at 11. 2 years ago he finally got his tx and is in college feeling great. I now want to kill him because he is acting like a normal 21 year old. Both you and your husband need to go on with your lives and be aware of the PSC but do not let it consume you. I made that mistake when was diagnosed and it almost killed me. Come to this group for info and support. We are always here. Martizorro_tammy wrote: My husband's doctor says he's 99% sure that my husband (Chad) has PSC. He is going for a liver biopsy on Wednesday. We are both 30 years old. Chad is a K-9 police officer & very active in his job. It's driving him crazy being on sick leave. Everything that I have read on PSC suggests that a person will probably go into liver failure & need a liver transplant within 10 years of being diagnosed. I'm not dealing very well with that! Can someone give me some more positive news about this disease before I have a complete nervous breakdown? Thanks.

Tammy

The fish are biting.

Get more visitors on your site using Yahoo! Search Marketing.

[Guest guest]

One of our members (Craig) is a K9 officer in the Des Moines, IA area. We have not heard from him in a while, but he still has an active membership.

I had a similar diagnosis, but it's been 7 years and I'm still asymptomatic since balloon dilatation of my common bile duct in 2001. My wife had a similar reaction to yours (we're pretty hard on our caregivers , but she's settled down a bit now! Hang in there - this is the place for questions.

Arne

55 - UC 1977, PSC 2000

Alive and (mostly) well in Minnesota

________________________________

From: [mailto: ] On Behalf Of zorro_tammy

Can someone give me some more positive news about this disease before I have a complete nervous breakdown? Thanks. Tammy

[Guest guest]

One of our members (Craig) is a K9 officer in the Des Moines, IA area. We have not heard from him in a while, but he still has an active membership.

I had a similar diagnosis, but it's been 7 years and I'm still asymptomatic since balloon dilatation of my common bile duct in 2001. My wife had a similar reaction to yours (we're pretty hard on our caregivers , but she's settled down a bit now! Hang in there - this is the place for questions.

Arne

55 - UC 1977, PSC 2000

Alive and (mostly) well in Minnesota

________________________________

From: [mailto: ] On Behalf Of zorro_tammy

Can someone give me some more positive news about this disease before I have a complete nervous breakdown? Thanks. Tammy

[Guest guest]

One of our members (Craig) is a K9 officer in the Des Moines, IA area. We have not heard from him in a while, but he still has an active membership.

I had a similar diagnosis, but it's been 7 years and I'm still asymptomatic since balloon dilatation of my common bile duct in 2001. My wife had a similar reaction to yours (we're pretty hard on our caregivers , but she's settled down a bit now! Hang in there - this is the place for questions.

Arne

55 - UC 1977, PSC 2000

Alive and (mostly) well in Minnesota

________________________________

From: [mailto: ] On Behalf Of zorro_tammy

Can someone give me some more positive news about this disease before I have a complete nervous breakdown? Thanks. Tammy

[Guest guest]

Welcome Tammy,

I am sorry you are here, but if your DH has PSC you have found a

wonderful support group. You will find that everyone is in a different

phase of this rollercoaster called PSC. Everyone reacts to PSC

differently and you will find the the internet has a TON of scary

information on this disease. Step one: TAKE a DEEP breath. Step two:

find the best specialist in your area. PSC is not well known, getting

more so as we go on. Personally I would suggest a heptologist, but that

is the route we went and feel we got the best care. My husband is now 3

months post-transplant, and doing very well. It has taken time and he

still is not at 100% but everyday is a positive step forward.

As my husbands wife... I researched my butt off cause he delt with PSC

by NOT dealing with it. I knew more about his disease than he did.

Good Luck and God Bless

Litsa

wanna read how he is doing? www.delivermyliver.com

[Guest guest]

Welcome Tammy,

I am sorry you are here, but if your DH has PSC you have found a

wonderful support group. You will find that everyone is in a different

phase of this rollercoaster called PSC. Everyone reacts to PSC

differently and you will find the the internet has a TON of scary

information on this disease. Step one: TAKE a DEEP breath. Step two:

find the best specialist in your area. PSC is not well known, getting

more so as we go on. Personally I would suggest a heptologist, but that

is the route we went and feel we got the best care. My husband is now 3

months post-transplant, and doing very well. It has taken time and he

still is not at 100% but everyday is a positive step forward.

As my husbands wife... I researched my butt off cause he delt with PSC

by NOT dealing with it. I knew more about his disease than he did.

Good Luck and God Bless

Litsa

wanna read how he is doing? www.delivermyliver.com

[Guest guest]

Welcome Tammy,

I am sorry you are here, but if your DH has PSC you have found a

wonderful support group. You will find that everyone is in a different

phase of this rollercoaster called PSC. Everyone reacts to PSC

differently and you will find the the internet has a TON of scary

information on this disease. Step one: TAKE a DEEP breath. Step two:

find the best specialist in your area. PSC is not well known, getting

more so as we go on. Personally I would suggest a heptologist, but that

is the route we went and feel we got the best care. My husband is now 3

months post-transplant, and doing very well. It has taken time and he

still is not at 100% but everyday is a positive step forward.

As my husbands wife... I researched my butt off cause he delt with PSC

by NOT dealing with it. I knew more about his disease than he did.

Good Luck and God Bless

Litsa

wanna read how he is doing? www.delivermyliver.com

[Guest guest]

Hi Tammy,

As everyone else has said, this disease can progress in different ways.

In a weird way having this sword dangling over my head has kind of has

helped me focus on doing what I value now, and avoid putting it off to

some distant future date. But it has also made me focus on working on

financial security as best I can.

My husband and I have a rule that only one of us can panic at a time!

It really helps to talk your anxieties out with a trusted friend or

counselor, as well as with each other.

Martha (MA)

UC, 1979, PSC 1992, asymptomatic

[Guest guest]

Hi Tammy,

As everyone else has said, this disease can progress in different ways.

In a weird way having this sword dangling over my head has kind of has

helped me focus on doing what I value now, and avoid putting it off to

some distant future date. But it has also made me focus on working on

financial security as best I can.

My husband and I have a rule that only one of us can panic at a time!

It really helps to talk your anxieties out with a trusted friend or

counselor, as well as with each other.

Martha (MA)

UC, 1979, PSC 1992, asymptomatic

[Guest guest]

Hi Tammy,

As everyone else has said, this disease can progress in different ways.

In a weird way having this sword dangling over my head has kind of has

helped me focus on doing what I value now, and avoid putting it off to

some distant future date. But it has also made me focus on working on

financial security as best I can.

My husband and I have a rule that only one of us can panic at a time!

It really helps to talk your anxieties out with a trusted friend or

counselor, as well as with each other.

Martha (MA)

UC, 1979, PSC 1992, asymptomatic

[Guest guest]

Hi Tammy;

Welcome to the group. Sorry that your husband's PSC diagnosis brings

you here, but glad that you found us. As others have already mentioned

the course of the disease is very variable. The " 10-year to

transplant " estimate is only an average ... some may progress faster,

and some slower. It's helpful to remind ourselves about the slowly

progressing/less severe cases:

Dig Dis Sci. 1981 Sep;26(9):778-82.

Long-standing asymptomatic primary sclerosing cholangitis: report of

three cases.

Chapman RW, Burroughs AK, Bass NM, Sherlock S.

Three patients, two males and one female, with asymptomatic primary

sclerosing cholangitis (PSC) are described. The diagnosis was made in

each case by endoscopic retrograde cholangiography after investigation

of persistent elevation of the serum alkaline phosphatase. All three

have remained completely well without any medical or surgical treatment

for 3, 7, and 15 years, respectively, despite extensive involvement of

the biliary tree. Follow-up liver biopsies in two have shown no

histological evidence of progression to secondary biliary cirrhosis.

PSC may occur more frequently and may follow a less severe clinical

course than previously recognized. PMID: 7285744.

Best regards,

Dave

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

[Guest guest]

Hi Tammy;

Welcome to the group. Sorry that your husband's PSC diagnosis brings

you here, but glad that you found us. As others have already mentioned

the course of the disease is very variable. The " 10-year to

transplant " estimate is only an average ... some may progress faster,

and some slower. It's helpful to remind ourselves about the slowly

progressing/less severe cases:

Dig Dis Sci. 1981 Sep;26(9):778-82.

Long-standing asymptomatic primary sclerosing cholangitis: report of

three cases.

Chapman RW, Burroughs AK, Bass NM, Sherlock S.

Three patients, two males and one female, with asymptomatic primary

sclerosing cholangitis (PSC) are described. The diagnosis was made in

each case by endoscopic retrograde cholangiography after investigation

of persistent elevation of the serum alkaline phosphatase. All three

have remained completely well without any medical or surgical treatment

for 3, 7, and 15 years, respectively, despite extensive involvement of

the biliary tree. Follow-up liver biopsies in two have shown no

histological evidence of progression to secondary biliary cirrhosis.

PSC may occur more frequently and may follow a less severe clinical

course than previously recognized. PMID: 7285744.

Best regards,

Dave

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

[Guest guest]

Hi Tammy;

Welcome to the group. Sorry that your husband's PSC diagnosis brings

you here, but glad that you found us. As others have already mentioned

the course of the disease is very variable. The " 10-year to

transplant " estimate is only an average ... some may progress faster,

and some slower. It's helpful to remind ourselves about the slowly

progressing/less severe cases:

Dig Dis Sci. 1981 Sep;26(9):778-82.

Long-standing asymptomatic primary sclerosing cholangitis: report of

three cases.

Chapman RW, Burroughs AK, Bass NM, Sherlock S.

Three patients, two males and one female, with asymptomatic primary

sclerosing cholangitis (PSC) are described. The diagnosis was made in

each case by endoscopic retrograde cholangiography after investigation

of persistent elevation of the serum alkaline phosphatase. All three

have remained completely well without any medical or surgical treatment

for 3, 7, and 15 years, respectively, despite extensive involvement of

the biliary tree. Follow-up liver biopsies in two have shown no

histological evidence of progression to secondary biliary cirrhosis.

PSC may occur more frequently and may follow a less severe clinical

course than previously recognized. PMID: 7285744.

Best regards,

Dave

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

[Guest guest]

Marti,We just moved from Ann Arbor MI to St. sburg, FL.LeeLeeAre you the one that lives in Delhi?Marti