RE: Lets try again- rollercoaster disease

[Guest guest]

Maggie,

 

I would welcome you but you've been a member much longer than I (longer than most of us). It sounds like a real roller coaster that this disease has you on. We will pray for you and your husband that your roller coaster ride will end in a good spot (like maybe with a transplant).

 

Ian 

Hi Everyone,

Sorry about that my computer is doing strange things. I joined this group in 2003 when my husband was diagnosed with PSC. I've just been reading all the post for the past 6 years. My husband was diagnosed after he was admitted to the hospital for a seizure, which he has no history of. He had blood clots in both legs,arms and in his head.He had a serious antithrombin III deficiency. It wasn't until a yr later that they discovered and diagnosed him with PSC. The doctors are all fascinated with his case bc they say this only happens to 1% of people with PSC and it usually happens at the endstage of the disease. He has been pretty much symptom free for 6 yrs, other than the occasional cholangitis " attacks " (jaundice, dark urine, gray colored bms and pain in urq) every two yrs. that last for about 2 wks. 2 yrs ago his doctor the famous Dr.Regenstein (thats what all the doctors in New Orleans call him) with Tulane Hospital said that looked horrible ,after he did an ERCP,and said that he would have to get on the transplant list. Well all the sudden got better. 2 months ago he started with symptoms again. Dr said needed to get on the list. So, we went thru all the testing, 's INR was 11 so they wouldn't let us leave the hospital bc they thought he might be bleeding internally ( is on coumadin). His score at that time was a 28. Regenstein wanted to see a neurologist before they put him on the list (because of him having had a blood colt in the head) and also we had to wait for approval from the Ins. Co. Everything took about 2 wks to get going so of course had to retake labs for tx list and what do think happened. His score is now a 17! so now we go from being told he would be transplanted possibly in a wk but no longer than 6 wks, to could be a year! what a rollercoaster! We had gotten mentally prepared for this and now it's a waiting game. When they did the testing they discovered that his gallbladder was filled with sludge and enlarged, along with the spleen being slightly enlarged. they also found what they think is a complex cyst within the liver. They said they cannot remove the gallbladder bc it would complicate the TX. They haven't really said anything about the complex cyst in the liver other than they will check it agin in 6 months if he hsa not been TXed yet. Well I think thats all 's history, Just wondering if this rollercoaster is normal and should we be worried about the possible cyst and the gallbladder problem? Thanks to everyone who actually read this entire email, That's what happens when you keep quite for 6 yrs.

 

Thank you,

Maggie, wife of   UC 1987, PSC 2003

Mom to and

-- Ian Cribb  P.Eng.cell:  (6...Enefen - Reviewer/Designerwww.enefen.com

[Guest guest]

Maggie,

 

I would welcome you but you've been a member much longer than I (longer than most of us). It sounds like a real roller coaster that this disease has you on. We will pray for you and your husband that your roller coaster ride will end in a good spot (like maybe with a transplant).

 

Ian 

Hi Everyone,

Sorry about that my computer is doing strange things. I joined this group in 2003 when my husband was diagnosed with PSC. I've just been reading all the post for the past 6 years. My husband was diagnosed after he was admitted to the hospital for a seizure, which he has no history of. He had blood clots in both legs,arms and in his head.He had a serious antithrombin III deficiency. It wasn't until a yr later that they discovered and diagnosed him with PSC. The doctors are all fascinated with his case bc they say this only happens to 1% of people with PSC and it usually happens at the endstage of the disease. He has been pretty much symptom free for 6 yrs, other than the occasional cholangitis " attacks " (jaundice, dark urine, gray colored bms and pain in urq) every two yrs. that last for about 2 wks. 2 yrs ago his doctor the famous Dr.Regenstein (thats what all the doctors in New Orleans call him) with Tulane Hospital said that looked horrible ,after he did an ERCP,and said that he would have to get on the transplant list. Well all the sudden got better. 2 months ago he started with symptoms again. Dr said needed to get on the list. So, we went thru all the testing, 's INR was 11 so they wouldn't let us leave the hospital bc they thought he might be bleeding internally ( is on coumadin). His score at that time was a 28. Regenstein wanted to see a neurologist before they put him on the list (because of him having had a blood colt in the head) and also we had to wait for approval from the Ins. Co. Everything took about 2 wks to get going so of course had to retake labs for tx list and what do think happened. His score is now a 17! so now we go from being told he would be transplanted possibly in a wk but no longer than 6 wks, to could be a year! what a rollercoaster! We had gotten mentally prepared for this and now it's a waiting game. When they did the testing they discovered that his gallbladder was filled with sludge and enlarged, along with the spleen being slightly enlarged. they also found what they think is a complex cyst within the liver. They said they cannot remove the gallbladder bc it would complicate the TX. They haven't really said anything about the complex cyst in the liver other than they will check it agin in 6 months if he hsa not been TXed yet. Well I think thats all 's history, Just wondering if this rollercoaster is normal and should we be worried about the possible cyst and the gallbladder problem? Thanks to everyone who actually read this entire email, That's what happens when you keep quite for 6 yrs.

 

Thank you,

Maggie, wife of   UC 1987, PSC 2003

Mom to and

-- Ian Cribb  P.Eng.cell:  (6...Enefen - Reviewer/Designerwww.enefen.com

[Guest guest]

Thanks Ian. I know it sounds horrible but and I are hoping he will get sick again so he get TX and be done with it. My mistake I joined this group in Jan of 2004.

Hi Everyone,

Sorry about that my computer is doing strange things. I joined this group in 2003 when my husband was diagnosed with PSC. I've just been reading all the post for the past 6 years. My husband was diagnosed after he was admitted to the hospital for a seizure, which he has no history of. He had blood clots in both legs,arms and in his head.He had a serious antithrombin III deficiency. It wasn't until a yr later that they discovered and diagnosed him with PSC. The doctors are all fascinated with his case bc they say this only happens to 1% of people with PSC and it usually happens at the endstage of the disease. He has been pretty much symptom free for 6 yrs, other than the occasional cholangitis "attacks"(jaundice, dark urine, gray colored bms and pain in urq) every two yrs. that last for about 2 wks. 2 yrs ago his doctor the famous Dr.Regenstein (thats what all the doctors in New Orleans call him) with Tulane Hospital said that looked

horrible ,after he did an ERCP,and said that he would have to get on the transplant list. Well all the sudden got better. 2 months ago he started with symptoms again. Dr said needed to get on the list. So, we went thru all the testing, 's INR was 11 so they wouldn't let us leave the hospital bc they thought he might be bleeding internally ( is on coumadin). His score at that time was a 28. Regenstein wanted to see a neurologist before they put him on the list (because of him having had a blood colt in the head) and also we had to wait for approval from the Ins. Co. Everything took about 2 wks to get going so of course had to retake labs for tx list and what do think happened. His score is now a 17! so now we go from being told he would be transplanted possibly in a wk but no longer than 6 wks, to could be a year! what a rollercoaster! We had gotten mentally prepared for this and now it's a waiting game. When they did

the testing they discovered that his gallbladder was filled with sludge and enlarged, along with the spleen being slightly enlarged. they also found what they think is a complex cyst within the liver. They said they cannot remove the gallbladder bc it would complicate the TX. They haven't really said anything about the complex cyst in the liver other than they will check it agin in 6 months if he hsa not been TXed yet. Well I think thats all 's history, Just wondering if this rollercoaster is normal and should we be worried about the possible cyst and the gallbladder problem? Thanks to everyone who actually read this entire email, That's what happens when you keep quite for 6 yrs.

Thank you,

Maggie, wife of UC 1987, PSC 2003

Mom to and

-- Ian Cribb P.Eng.cell: (6...Enefen - Reviewer/Designerwww.enefen.com

[Guest guest]

Thanks Ian. I know it sounds horrible but and I are hoping he will get sick again so he get TX and be done with it. My mistake I joined this group in Jan of 2004.

Hi Everyone,

Sorry about that my computer is doing strange things. I joined this group in 2003 when my husband was diagnosed with PSC. I've just been reading all the post for the past 6 years. My husband was diagnosed after he was admitted to the hospital for a seizure, which he has no history of. He had blood clots in both legs,arms and in his head.He had a serious antithrombin III deficiency. It wasn't until a yr later that they discovered and diagnosed him with PSC. The doctors are all fascinated with his case bc they say this only happens to 1% of people with PSC and it usually happens at the endstage of the disease. He has been pretty much symptom free for 6 yrs, other than the occasional cholangitis "attacks"(jaundice, dark urine, gray colored bms and pain in urq) every two yrs. that last for about 2 wks. 2 yrs ago his doctor the famous Dr.Regenstein (thats what all the doctors in New Orleans call him) with Tulane Hospital said that looked

horrible ,after he did an ERCP,and said that he would have to get on the transplant list. Well all the sudden got better. 2 months ago he started with symptoms again. Dr said needed to get on the list. So, we went thru all the testing, 's INR was 11 so they wouldn't let us leave the hospital bc they thought he might be bleeding internally ( is on coumadin). His score at that time was a 28. Regenstein wanted to see a neurologist before they put him on the list (because of him having had a blood colt in the head) and also we had to wait for approval from the Ins. Co. Everything took about 2 wks to get going so of course had to retake labs for tx list and what do think happened. His score is now a 17! so now we go from being told he would be transplanted possibly in a wk but no longer than 6 wks, to could be a year! what a rollercoaster! We had gotten mentally prepared for this and now it's a waiting game. When they did

the testing they discovered that his gallbladder was filled with sludge and enlarged, along with the spleen being slightly enlarged. they also found what they think is a complex cyst within the liver. They said they cannot remove the gallbladder bc it would complicate the TX. They haven't really said anything about the complex cyst in the liver other than they will check it agin in 6 months if he hsa not been TXed yet. Well I think thats all 's history, Just wondering if this rollercoaster is normal and should we be worried about the possible cyst and the gallbladder problem? Thanks to everyone who actually read this entire email, That's what happens when you keep quite for 6 yrs.

Thank you,

Maggie, wife of UC 1987, PSC 2003

Mom to and

-- Ian Cribb P.Eng.cell: (6...Enefen - Reviewer/Designerwww.enefen.com

[Guest guest]

Thanks Ian. I know it sounds horrible but and I are hoping he will get sick again so he get TX and be done with it. My mistake I joined this group in Jan of 2004.

Hi Everyone,

Sorry about that my computer is doing strange things. I joined this group in 2003 when my husband was diagnosed with PSC. I've just been reading all the post for the past 6 years. My husband was diagnosed after he was admitted to the hospital for a seizure, which he has no history of. He had blood clots in both legs,arms and in his head.He had a serious antithrombin III deficiency. It wasn't until a yr later that they discovered and diagnosed him with PSC. The doctors are all fascinated with his case bc they say this only happens to 1% of people with PSC and it usually happens at the endstage of the disease. He has been pretty much symptom free for 6 yrs, other than the occasional cholangitis "attacks"(jaundice, dark urine, gray colored bms and pain in urq) every two yrs. that last for about 2 wks. 2 yrs ago his doctor the famous Dr.Regenstein (thats what all the doctors in New Orleans call him) with Tulane Hospital said that looked

horrible ,after he did an ERCP,and said that he would have to get on the transplant list. Well all the sudden got better. 2 months ago he started with symptoms again. Dr said needed to get on the list. So, we went thru all the testing, 's INR was 11 so they wouldn't let us leave the hospital bc they thought he might be bleeding internally ( is on coumadin). His score at that time was a 28. Regenstein wanted to see a neurologist before they put him on the list (because of him having had a blood colt in the head) and also we had to wait for approval from the Ins. Co. Everything took about 2 wks to get going so of course had to retake labs for tx list and what do think happened. His score is now a 17! so now we go from being told he would be transplanted possibly in a wk but no longer than 6 wks, to could be a year! what a rollercoaster! We had gotten mentally prepared for this and now it's a waiting game. When they did

the testing they discovered that his gallbladder was filled with sludge and enlarged, along with the spleen being slightly enlarged. they also found what they think is a complex cyst within the liver. They said they cannot remove the gallbladder bc it would complicate the TX. They haven't really said anything about the complex cyst in the liver other than they will check it agin in 6 months if he hsa not been TXed yet. Well I think thats all 's history, Just wondering if this rollercoaster is normal and should we be worried about the possible cyst and the gallbladder problem? Thanks to everyone who actually read this entire email, That's what happens when you keep quite for 6 yrs.

Thank you,

Maggie, wife of UC 1987, PSC 2003

Mom to and

-- Ian Cribb P.Eng.cell: (6...Enefen - Reviewer/Designerwww.enefen.com

[Guest guest]

Thank you Gene for your prayers, we greatly appreciate it. We have people of all different faiths praying for and all are welcome.

Maggie

Subject: Re: Lets try again- rollercoaster diseaseTo: Date: Wednesday, March 25, 2009, 8:07 PM

Maggie, You and are in our prayers. I was diagnosed with PSC in 2000, and just recently had a cancer scare that Leah and I were able to get through. Our faith in God is very strong. Keep us posted on how you all are doing. God Bless. Eugene U/C 1993, PSC 2000>> Hi Everyone,> Sorry about that my computer is doing strange things. I joined this group in 2003 when my husband was diagnosed with PSC. I've just been reading all the post for the past 6 years. My husband was diagnosed after he was admitted to the hospital for a seizure, which he has no history of. He had blood clots in both legs,arms and in his head.He had a serious antithrombin III deficiency. It wasn't

until a yr later that they discovered and diagnosed him with PSC. The doctors are all fascinated with his case bc they say this only happens to 1% of people with PSC and it usually happens at the endstage of the disease. He has been pretty much symptom free for 6 yrs, other than the occasional cholangitis "attacks"(jaundice, dark urine, gray colored bms and pain in urq) every two yrs. that last for about 2 wks. 2 yrs ago his doctor the famous Dr.Regenstein (thats what all the doctors in New Orleans call him) with Tulane Hospital said that looked horrible> ,after he did an ERCP,and said that he would have to get on the transplant list. Well all the sudden got better. 2 months ago he started with symptoms again. Dr said needed to get on the list. So, we went thru all the testing, 's INR was 11 so they wouldn't let us leave the hospital bc they thought he might be bleeding internally ( is on coumadin). His score at

that time was a 28. Regenstein wanted to see a neurologist before they put him on the list (because of him having had a blood colt in the head) and also we had to wait for approval from the Ins. Co. Everything took about 2 wks to get going so of course had to retake labs for tx list and what do think happened. His score is now a 17! so now we go from being told he would be transplanted possibly in a wk but no longer than 6 wks, to could be a year! what a rollercoaster! We had gotten mentally prepared for this and now it's a waiting game. When they did the> testing they discovered that his gallbladder was filled with sludge and enlarged, along with the spleen being slightly enlarged. they also found what they think is a complex cyst within the liver. They said they cannot remove the gallbladder bc it would complicate the TX. They haven't really said anything about the complex cyst in the liver other than they will check it agin in 6

months if he hsa not been TXed yet. Well I think thats all 's history, Just wondering if this rollercoaster is normal and should we be worried about the possible cyst and the gallbladder problem? Thanks to everyone who actually read this entire email, That's what happens when you keep quite for 6 yrs.> > Thank you,> Maggie, wife of UC 1987, PSC 2003> Mom to and >

[Guest guest]

Thank you Gene for your prayers, we greatly appreciate it. We have people of all different faiths praying for and all are welcome.

Maggie

Subject: Re: Lets try again- rollercoaster diseaseTo: Date: Wednesday, March 25, 2009, 8:07 PM

Maggie, You and are in our prayers. I was diagnosed with PSC in 2000, and just recently had a cancer scare that Leah and I were able to get through. Our faith in God is very strong. Keep us posted on how you all are doing. God Bless. Eugene U/C 1993, PSC 2000>> Hi Everyone,> Sorry about that my computer is doing strange things. I joined this group in 2003 when my husband was diagnosed with PSC. I've just been reading all the post for the past 6 years. My husband was diagnosed after he was admitted to the hospital for a seizure, which he has no history of. He had blood clots in both legs,arms and in his head.He had a serious antithrombin III deficiency. It wasn't

until a yr later that they discovered and diagnosed him with PSC. The doctors are all fascinated with his case bc they say this only happens to 1% of people with PSC and it usually happens at the endstage of the disease. He has been pretty much symptom free for 6 yrs, other than the occasional cholangitis "attacks"(jaundice, dark urine, gray colored bms and pain in urq) every two yrs. that last for about 2 wks. 2 yrs ago his doctor the famous Dr.Regenstein (thats what all the doctors in New Orleans call him) with Tulane Hospital said that looked horrible> ,after he did an ERCP,and said that he would have to get on the transplant list. Well all the sudden got better. 2 months ago he started with symptoms again. Dr said needed to get on the list. So, we went thru all the testing, 's INR was 11 so they wouldn't let us leave the hospital bc they thought he might be bleeding internally ( is on coumadin). His score at

that time was a 28. Regenstein wanted to see a neurologist before they put him on the list (because of him having had a blood colt in the head) and also we had to wait for approval from the Ins. Co. Everything took about 2 wks to get going so of course had to retake labs for tx list and what do think happened. His score is now a 17! so now we go from being told he would be transplanted possibly in a wk but no longer than 6 wks, to could be a year! what a rollercoaster! We had gotten mentally prepared for this and now it's a waiting game. When they did the> testing they discovered that his gallbladder was filled with sludge and enlarged, along with the spleen being slightly enlarged. they also found what they think is a complex cyst within the liver. They said they cannot remove the gallbladder bc it would complicate the TX. They haven't really said anything about the complex cyst in the liver other than they will check it agin in 6

months if he hsa not been TXed yet. Well I think thats all 's history, Just wondering if this rollercoaster is normal and should we be worried about the possible cyst and the gallbladder problem? Thanks to everyone who actually read this entire email, That's what happens when you keep quite for 6 yrs.> > Thank you,> Maggie, wife of UC 1987, PSC 2003> Mom to and >

[Guest guest]

Maggie,

I can't help you with the cyst question,

but I had my gallbladder removed three years ago because of sludge. I was also

told then that removing the gallbladder could complicate the Tx somewhat

because of scar tissue. It was considered a risk worth taking since I was (and

am, I hope) nowhere near a transplant yet, and the doctors didn't want the

sludge in the gallbladder traveling from the gallbladder to the common bile

duct and clogging it up. In 's case I think it would be indeed better to

wait for his Tx and then do it all in one go. I am no doctor of course, but it

makes sense to me.

Regards,

Chaim

From: [mailto: ] On Behalf Of Maggie Roussel

Sent: Thursday, March 26, 2009

02:38

To:

Subject: Lets try

again- rollercoaster disease

Hi Everyone,

Sorry about that my computer is doing strange

things. I joined this group in 2003 when my husband was diagnosed with PSC.

I've just been reading all the post for the past 6 years. My husband was

diagnosed after he was admitted to the hospital for a seizure, which he has

no history of. He had blood clots in both legs,arms and in his head.He had a

serious antithrombin III deficiency. It wasn't until a yr later that they

discovered and diagnosed him with PSC. The doctors are all fascinated with

his case bc they say this only happens to 1% of people with PSC and it

usually happens at the endstage of the disease. He has been pretty much

symptom free for 6 yrs, other than the occasional cholangitis

" attacks " (jaundice, dark urine, gray colored bms and pain in

urq) every two yrs. that last for about 2 wks. 2 yrs ago his doctor the

famous Dr.Regenstein (thats what all the doctors in New Orleans call him)

with Tulane Hospital said that looked horrible ,after he did an

ERCP,and said that he would have to get on the transplant list. Well all the

sudden got better. 2 months ago he started with symptoms again. Dr said

needed to get on the list. So, we went thru all the testing, 's

INR was 11 so they wouldn't let us leave the hospital bc they thought he

might be bleeding internally ( is on coumadin). His score at that time

was a 28. Regenstein wanted to see a neurologist before they put him on

the list (because of him having had a blood colt in the head) and also we had

to wait for approval from the Ins. Co. Everything took about 2 wks to get

going so of course had to retake labs for tx list and what do think

happened. His score is now a 17! so now we go from being told he would be

transplanted possibly in a wk but no longer than 6 wks, to could be a year!

what a rollercoaster! We had gotten mentally prepared for this and now it's a

waiting game. When they did the testing they discovered that his gallbladder

was filled with sludge and enlarged, along with the spleen being slightly

enlarged. they also found what they think is a complex cyst within the liver.

They said they cannot remove the gallbladder bc it would complicate the TX.

They haven't really said anything about the complex cyst in the liver other

than they will check it agin in 6 months if he hsa not been TXed yet. Well I

think thats all 's history, Just wondering if this rollercoaster is

normal and should we be worried about the possible cyst and the gallbladder

problem? Thanks to everyone who actually read this entire email, That's what

happens when you keep quite for 6 yrs.

Thank you,

Maggie, wife of UC 1987, PSC 2003

Mom to and

[Guest guest]

Previous gallbladder surgery greatly complicated my later TX surgery. It took them 12 hours to remove my old liver, partly because of the scar tissue.

Don

Please be a blood/organ donor

[Guest guest]

Previous gallbladder surgery greatly complicated my later TX surgery. It took them 12 hours to remove my old liver, partly because of the scar tissue.

Don

Please be a blood/organ donor

[Guest guest]

Previous gallbladder surgery greatly complicated my later TX surgery. It took them 12 hours to remove my old liver, partly because of the scar tissue.

Don

Please be a blood/organ donor