Husband just diagnosed with PSC

[Guest guest]

Hi There,

I am looking for advise and suggestions. My husband is 30 DOB 9-4-78.

He leads a very healthy lifestyle and is very athletic. He was

disgnosed with PSC last week after a ERCP. We were told that his bile

ducts within the liver are diseased (narrowing) as well as scarring on

the common bile duct.

He has elevated liver enzymes but no other outward symtoms at this

time. He did have elevated enzymes in 2004, they did a CAT Scan and

told us that they didn't see anything so we went on with our lives for

the past 4 years until we saw a liver specialist. They have him on

URSO, first at they high level, then the abstract came out and the

Doctor lowered his dose.

I really want to get a second opinion at the Mayo Clinic in MN. Are any

of you or your relatives being seen there? I am also interested in

dietary ways that I can help him, so any advise is welcome.

Thank you.

RC

[Guest guest]

My husband was also diagnosed in his early 30's. They found it when he had his gallbladder out. It turned out that the PSC had caused damage to the gallbladder. He is currently a patient at Mayo Clinic in Florida. Although I can't speak about the one in Minnisota, if it is as good as Fl. I would say that it is worth going there. We 1st went to Columbia Presbyterian in Manhattan and we were not impressed. After 3 years of going there I decided that my husband's health was worth more to our family and he deserved the very best care. I did hours of research to find that in the US Mayo holds the top 3 spots for success in transplants. I know that there are other good hospitals out there, but it helps when the patient and family are comfortable and trust where they go.

We have 3 children and this has been a long journey. My husband has been diagnosed for 7 years now. His numbers fluctuate depending on if the bile is draining. He is in the late stage of the disease now.

Keep your head up. Sometimes it feels like you are on a roller coaster!

Patti

[Guest guest]

My husband was also diagnosed in his early 30's. They found it when he had his gallbladder out. It turned out that the PSC had caused damage to the gallbladder. He is currently a patient at Mayo Clinic in Florida. Although I can't speak about the one in Minnisota, if it is as good as Fl. I would say that it is worth going there. We 1st went to Columbia Presbyterian in Manhattan and we were not impressed. After 3 years of going there I decided that my husband's health was worth more to our family and he deserved the very best care. I did hours of research to find that in the US Mayo holds the top 3 spots for success in transplants. I know that there are other good hospitals out there, but it helps when the patient and family are comfortable and trust where they go.

We have 3 children and this has been a long journey. My husband has been diagnosed for 7 years now. His numbers fluctuate depending on if the bile is draining. He is in the late stage of the disease now.

Keep your head up. Sometimes it feels like you are on a roller coaster!

Patti

[Guest guest]

Hi RC

I'm a relatively new member as my husband also has PSC. I have found this site to be supportive and informational..though there are so many emails coming in I don't really get to all of them because it can be overwhelming. Then, one day something will happen and instead of feeling alone, you beam out an email and low and behold...you get some of the most heartfelt, compassionate, insightful emails from strangers across the country dealing with the same fears and issues.

I recently sent an email out after I unexpectedly became pregnant (2nd time around) and my husband 's fears and anxieties had completely shut him off to me. I got some of the most personal and helpful emails back and it was really wonderful.

I am now 4 1/2 months pregnant and we are working through our issues but I realize that, although Rob doesn't have many symptoms right now either, the overwhelming shadow of PSC haunts him every day and I think affects his ability to be fully "present".

When someone is diagnosed with a "disease" it can affect them in different ways. Some people cherish each day more than ever before. Others become paralized, or let the disease control them. Others become more guarded with their feelings so that people don't "get too close." It's a tough road - both with the real and imagined fears and realities. There are so many "what ifs" and like someone said, it is a very individualized disease.

While we are the spouses, we worry and suffer in different ways. Sometimes being one step removed allows us to be on these support networks to gain knowledge and ask questions that maybe our spouses don't feel comfortable asking. Nevertheless, you're here and it's a good thing.Please visit http://www.cdbaby.com/lezlee---

Subject: Husband just diagnosed with PSCTo: Date: Monday, November 10, 2008, 2:02 PM

Hi There,I am looking for advise and suggestions. My husband is 30 DOB 9-4-78. He leads a very healthy lifestyle and is very athletic. He was disgnosed with PSC last week after a ERCP. We were told that his bile ducts within the liver are diseased (narrowing) as well as scarring on the common bile duct. He has elevated liver enzymes but no other outward symtoms at this time. He did have elevated enzymes in 2004, they did a CAT Scan and told us that they didn't see anything so we went on with our lives for the past 4 years until we saw a liver specialist. They have him on URSO, first at they high level, then the abstract came out and the Doctor lowered his dose.I really want to get a second opinion at the Mayo Clinic in MN. Are any of you or your relatives being seen there? I am also interested in dietary ways that I can help him, so any advise is welcome. Thank

you.RC

[Guest guest]

Hi RC

I'm a relatively new member as my husband also has PSC. I have found this site to be supportive and informational..though there are so many emails coming in I don't really get to all of them because it can be overwhelming. Then, one day something will happen and instead of feeling alone, you beam out an email and low and behold...you get some of the most heartfelt, compassionate, insightful emails from strangers across the country dealing with the same fears and issues.

I recently sent an email out after I unexpectedly became pregnant (2nd time around) and my husband 's fears and anxieties had completely shut him off to me. I got some of the most personal and helpful emails back and it was really wonderful.

I am now 4 1/2 months pregnant and we are working through our issues but I realize that, although Rob doesn't have many symptoms right now either, the overwhelming shadow of PSC haunts him every day and I think affects his ability to be fully "present".

When someone is diagnosed with a "disease" it can affect them in different ways. Some people cherish each day more than ever before. Others become paralized, or let the disease control them. Others become more guarded with their feelings so that people don't "get too close." It's a tough road - both with the real and imagined fears and realities. There are so many "what ifs" and like someone said, it is a very individualized disease.

While we are the spouses, we worry and suffer in different ways. Sometimes being one step removed allows us to be on these support networks to gain knowledge and ask questions that maybe our spouses don't feel comfortable asking. Nevertheless, you're here and it's a good thing.Please visit http://www.cdbaby.com/lezlee---

Subject: Husband just diagnosed with PSCTo: Date: Monday, November 10, 2008, 2:02 PM

Hi There,I am looking for advise and suggestions. My husband is 30 DOB 9-4-78. He leads a very healthy lifestyle and is very athletic. He was disgnosed with PSC last week after a ERCP. We were told that his bile ducts within the liver are diseased (narrowing) as well as scarring on the common bile duct. He has elevated liver enzymes but no other outward symtoms at this time. He did have elevated enzymes in 2004, they did a CAT Scan and told us that they didn't see anything so we went on with our lives for the past 4 years until we saw a liver specialist. They have him on URSO, first at they high level, then the abstract came out and the Doctor lowered his dose.I really want to get a second opinion at the Mayo Clinic in MN. Are any of you or your relatives being seen there? I am also interested in dietary ways that I can help him, so any advise is welcome. Thank

you.RC