Rejection Episodes

January 5, 2009

Hello to All,

My husband was diagnosed with PSC in January of 1991. About 7 years ago he was

placed

on the Transplant List at Jewish Hospital in St. Louis. His labs, etc.

remained stable

during that time. I can't remember his Meld score, but as I recall, he was in

about the

middle of the list.

The first part November he had an MRCP and HCC (hepatic cellular carcinoma) was

discovered on his liver. That immediately moved him to the top of the

transplant list.

Within 8 days of being moved to the top of the list we got our first call for a

possible

transplant. It was on Friday morning after Thanksgiving. We rushed to St.

Louis, we live in

Central Illinois, and at 8:00 p.m. that night we were told that it was a " no

go " . We were

disappointed but hoped that someone else would be able to receive the organ. We

then

got another call around 10:00 p.m. on December 2nd. That time it was " a go " and

my

husband received this precious gift on December 3rd.

The surgery went very well. He was in the hospital for 5 days. We stayed in a

hotel that is

attached to the /Washington University Medical School complex through a

walkway,

for another 10 days. After we got home he has labs done on Monday's and

Thursday's. On

the 12th day of being home, we got a call that Ron was rejecting. That was on

December

29. We loaded up at went back to St. Louis.

They did an ultra sound that showed no blockages and then a liver biopsy. The

liver

biopsy showed rejection. They increased his prednizone and tweaked a couple of

his other

meds. He was in the hospital from Monday until Thursday evening (New Year's

Day). We

came home on Saturday. This morning he had labs again. We got a call from our

transplant coordinator this afternoon telling us that there hadn't been as much

improvement in his labs as they had wanted. He is to have more labs on

Wednesday,

instead of Thursday, and if they haven't improved, we'll have to go back down.

Needless to say, we are scared and upset. He's starting to feel much better

since the

transplant. His color is good. In fact, his cheeks are now rosy. We were told

that this is

not unusual and that it happens to a lot of folks. Ron is afraid he will have

to have another

transplant. If this one doesn't work, why would another one work? There are so

many

questions.

My husband was 45 when he was diagnosed and he's now 63. He's a retired

firefighter

and not a whiner but he is feeling a little weary. We both had a " moment of

tears " this

afternoon and I think we both feel a little better.

We both have a strong faith and I've given this over to God. I keep trying to

fix things and

I cannot. We would appreciate any advice, suggestions or encouragement that you

might

have.

I've only posted a few times over the last 18 years but I always read what

everyone has to

say. It's been very helpful during this medical journey.

Judy from Central Illinois (wife of Ron..... my hero)

January 5, 2009

Your story has left my eyes a little blury.

I myself kind of put things( my health ) on the back burner. I need to have some time to just move on. My twins help me live life and look at the better things as adults we tend to take for granted.

Well what I wanted to say is time does heal. Live it up when you can. I am sorry for the bad news about the complications in your husbands transfer. I will keep him in my prayers.

I hope to share what ever good thing come . If you ever want to chat we are here.

Sending love , laughter, good energy!

Namaste',

Subject: Rejection EpisodesTo: Date: Monday, January 5, 2009, 3:36 PM

Hello to All,My husband was diagnosed with PSC in January of 1991. About 7 years ago he was placed on the Transplant List at Jewish Hospital in St. Louis. His labs, etc. remained stable during that time. I can't remember his Meld score, but as I recall, he was in about the middle of the list. The first part November he had an MRCP and HCC (hepatic cellular carcinoma) was discovered on his liver. That immediately moved him to the top of the transplant list. Within 8 days of being moved to the top of the list we got our first call for a possible transplant. It was on Friday morning after Thanksgiving. We rushed to St. Louis, we live in Central Illinois, and at 8:00 p.m. that night we were told that it was a "no go". We were disappointed but hoped that someone else would be able to receive the organ. We then got another call around 10:00 p.m. on December 2nd. That time it was "a go" and my

husband received this precious gift on December 3rd.The surgery went very well. He was in the hospital for 5 days. We stayed in a hotel that is attached to the /Washington University Medical School complex through a walkway, for another 10 days. After we got home he has labs done on Monday's and Thursday's. On the 12th day of being home, we got a call that Ron was rejecting. That was on December 29. We loaded up at went back to St. Louis. They did an ultra sound that showed no blockages and then a liver biopsy. The liver biopsy showed rejection. They increased his prednizone and tweaked a couple of his other meds. He was in the hospital from Monday until Thursday evening (New Year's Day). We came home on Saturday. This morning he had labs again. We got a call from our transplant coordinator this afternoon telling us that there hadn't been as much improvement in his labs as they had wanted. He

is to have more labs on Wednesday, instead of Thursday, and if they haven't improved, we'll have to go back down.Needless to say, we are scared and upset. He's starting to feel much better since the transplant. His color is good. In fact, his cheeks are now rosy. We were told that this is not unusual and that it happens to a lot of folks. Ron is afraid he will have to have another transplant. If this one doesn't work, why would another one work? There are so many questions. My husband was 45 when he was diagnosed and he's now 63. He's a retired firefighter and not a whiner but he is feeling a little weary. We both had a "moment of tears" this afternoon and I think we both feel a little better.We both have a strong faith and I've given this over to God. I keep trying to fix things and I cannot. We would appreciate any advice, suggestions or encouragement that you might have. I've only

posted a few times over the last 18 years but I always read what everyone has to say. It's been very helpful during this medical journey.Judy from Central Illinois (wife of Ron..... my hero)

January 5, 2009

Judy and Ron,

I want to relay what the transplant

surgeon told my wife and I when we were in the pre-transplant clinic. I

asked what would be done if I rejected my new liver. He said rejection is

more of an annoyance today than it is a threat. He said that the

current meds help make rejection events short lived. That is almost a

direct quote. It put my mind more at ease.

I too had a worrisome event after I had

progressed well for the first week. My biliruben spiked to 21+ and after

feeling great and my color returning to normal, I became jaundiced and had all

of the other symptoms - fatigue, loss of appetite, etc. My wife and I cried,

complained, and prayed. It turned out that one of the meds they had given

me to bolster my immunity for a particular harsh variety of pneumonia was

causing my issues.

The follow-up hep’s nurse told me

that the first six months are the worst. It gets better after that.

Joe

PSC & UC 1990; Tx- 10-17-2007

BTW, I am from central Illinois

also (near Peoria).

Where are you located?

From:

[mailto: ] On Behalf Of jrshort45

Sent: Monday, January 05, 2009

5:36 PM

To:

Subject: Rejection

Episodes

Hello to All,

My husband was diagnosed with PSC in January of 1991. About 7 years ago he was

placed

on the Transplant List at Jewish Hospital in St. Louis. His labs, etc. remained stable

during that time. I can't remember his Meld score, but as I recall, he was in

about the

middle of the list.

The first part November he had an MRCP and HCC (hepatic cellular carcinoma) was

discovered on his liver. That immediately moved him to the top of the

transplant list.

Within 8 days of being moved to the top of the list we got our first call for a

possible

transplant. It was on Friday morning after Thanksgiving. We rushed to St. Louis, we live in

Central Illinois, and at 8:00 p.m. that night

we were told that it was a " no go " . We were

disappointed but hoped that someone else would be able to receive the organ. We

then

got another call around 10:00 p.m. on December 2nd. That time it was " a

go " and my

husband received this precious gift on December 3rd.

The surgery went very well. He was in the hospital for 5 days. We stayed in a

hotel that is

attached to the /Washington University Medical School complex through a

walkway,

for another 10 days. After we got home he has labs done on Monday's and

Thursday's. On

the 12th day of being home, we got a call that Ron was rejecting. That was on

December

29. We loaded up at went back to St.

Louis.

They did an ultra sound that showed no blockages and then a liver biopsy. The

liver

biopsy showed rejection. They increased his prednizone and tweaked a couple of

his other

meds. He was in the hospital from Monday until Thursday evening (New Year's

Day). We

came home on Saturday. This morning he had labs again. We got a call from our

transplant coordinator this afternoon telling us that there hadn't been as much

improvement in his labs as they had wanted. He is to have more labs on Wednesday,

instead of Thursday, and if they haven't improved, we'll have to go back down.

Needless to say, we are scared and upset. He's starting to feel much better

since the

transplant. His color is good. In fact, his cheeks are now rosy. We were told

that this is

not unusual and that it happens to a lot of folks. Ron is afraid he will have

to have another

transplant. If this one doesn't work, why would another one work? There are so

many

questions.

My husband was 45 when he was diagnosed and he's now 63. He's a retired

firefighter

and not a whiner but he is feeling a little weary. We both had a " moment

of tears " this

afternoon and I think we both feel a little better.

We both have a strong faith and I've given this over to God. I keep trying to

fix things and

I cannot. We would appreciate any advice, suggestions or encouragement that you

might

have.

I've only posted a few times over the last 18 years but I always read what

everyone has to

say. It's been very helpful during this medical journey.

Judy from Central Illinois (wife of Ron.....

my hero)

January 5, 2009

Hi Joe,Thanks for your encouragement. It means a lot. I read your e-mail to one of our sons and my husband. They also were encouraged. We're saying prayers and keeping our fingers crossed that his liver enzymes look better on Wednesday. We live in Urbana. Home of the University of Illinois. Go Illini! Judy (wife of Ron)To:

Sent: Monday, January 5, 2009 7:10:27 PMSubject: RE: Rejection Episodes Judy and Ron, I want to relay what the transplant surgeon told my wife and I when we were in the pre-transplant clinic. I asked what would be done if I rejected my new liver. He said rejection is more of an annoyance today than it is a threat. He said that the current meds help make rejection events short lived.

That is almost a direct quote. It put my mind more at ease. I too had a worrisome event after I had progressed well for the first week. My biliruben spiked to 21+ and after feeling great and my color returning to normal, I became jaundiced and had all of the other symptoms - fatigue, loss of appetite, etc. My wife and I cried, complained, and prayed. It turned out that one of the meds they had given me to bolster my immunity for a particular harsh variety of pneumonia was causing my issues. The follow-up hep¢s nurse told me that the first six months are the worst. It gets better after that. Joe PSC & UC 1990; Tx- 10-17-2007 BTW, I am from central Illinois also (near Peoria ). Where are you located?

From: @ yahoogroups. com [mailto:psc- support@yahoogro ups.com] On Behalf Of jrshort45 Sent: Monday, January 05, 2009 5:36 PM To: @ yahoogroups. com Subject: Rejection Episodes Hello to All, My husband was diagnosed with PSC in January of 1991. About 7 years ago he was placed on the Transplant List at Jewish Hospital in St. Louis . His labs, etc. remained stable during that time. I can't remember his Meld score, but as I recall, he was in about the middle of the list. The first part November he had an MRCP and HCC (hepatic cellular carcinoma) was discovered on his liver. That immediately moved him to the top of the transplant list. Within 8 days of being moved to the top of the list we got our first call for a possible

transplant. It was on Friday morning after Thanksgiving. We rushed to St. Louis , we live in Central Illinois , and at 8:00 p.m. that night we were told that it was a "no go". We were disappointed but hoped that someone else would be able to receive the organ. We then got another call around 10:00 p.m. on December 2nd. That time it was "a go" and my husband received this precious gift on December 3rd. The surgery went very well. He was in the hospital for 5 days. We stayed in a hotel that is attached to the /Washington University Medical School complex through a walkway, for another 10 days. After we got home he has labs done on Monday's and Thursday's. On the 12th day of being home, we got a call that Ron was rejecting. That was on December 29. We loaded up at went back to St. Louis . They did an ultra sound that showed no blockages and then a liver biopsy. The liver biopsy

showed rejection. They increased his prednizone and tweaked a couple of his other meds. He was in the hospital from Monday until Thursday evening (New Year's Day). We came home on Saturday. This morning he had labs again. We got a call from our transplant coordinator this afternoon telling us that there hadn't been as much improvement in his labs as they had wanted. He is to have more labs on Wednesday, instead of Thursday, and if they haven't improved, we'll have to go back down. Needless to say, we are scared and upset. He's starting to feel much better since the transplant. His color is good. In fact, his cheeks are now rosy. We were told that this is not unusual and that it happens to a lot of folks. Ron is afraid he will have to have another transplant. If this one doesn't work, why would another one work? There are so many questions. My husband was 45 when he was diagnosed and he's

now 63. He's a retired firefighter and not a whiner but he is feeling a little weary. We both had a "moment of tears" this afternoon and I think we both feel a little better. We both have a strong faith and I've given this over to God. I keep trying to fix things and I cannot. We would appreciate any advice, suggestions or encouragement that you might have. I've only posted a few times over the last 18 years but I always read what everyone has to say. It's been very helpful during this medical journey. Judy from Central Illinois (wife of Ron..... my hero)

January 5, 2009

Hi Joe,Thanks for your encouragement. It means a lot. I read your e-mail to one of our sons and my husband. They also were encouraged. We're saying prayers and keeping our fingers crossed that his liver enzymes look better on Wednesday. We live in Urbana. Home of the University of Illinois. Go Illini! Judy (wife of Ron)To:

Sent: Monday, January 5, 2009 7:10:27 PMSubject: RE: Rejection Episodes Judy and Ron, I want to relay what the transplant surgeon told my wife and I when we were in the pre-transplant clinic. I asked what would be done if I rejected my new liver. He said rejection is more of an annoyance today than it is a threat. He said that the current meds help make rejection events short lived.

That is almost a direct quote. It put my mind more at ease. I too had a worrisome event after I had progressed well for the first week. My biliruben spiked to 21+ and after feeling great and my color returning to normal, I became jaundiced and had all of the other symptoms - fatigue, loss of appetite, etc. My wife and I cried, complained, and prayed. It turned out that one of the meds they had given me to bolster my immunity for a particular harsh variety of pneumonia was causing my issues. The follow-up hep¢s nurse told me that the first six months are the worst. It gets better after that. Joe PSC & UC 1990; Tx- 10-17-2007 BTW, I am from central Illinois also (near Peoria ). Where are you located?

From: @ yahoogroups. com [mailto:psc- support@yahoogro ups.com] On Behalf Of jrshort45 Sent: Monday, January 05, 2009 5:36 PM To: @ yahoogroups. com Subject: Rejection Episodes Hello to All, My husband was diagnosed with PSC in January of 1991. About 7 years ago he was placed on the Transplant List at Jewish Hospital in St. Louis . His labs, etc. remained stable during that time. I can't remember his Meld score, but as I recall, he was in about the middle of the list. The first part November he had an MRCP and HCC (hepatic cellular carcinoma) was discovered on his liver. That immediately moved him to the top of the transplant list. Within 8 days of being moved to the top of the list we got our first call for a possible

transplant. It was on Friday morning after Thanksgiving. We rushed to St. Louis , we live in Central Illinois , and at 8:00 p.m. that night we were told that it was a "no go". We were disappointed but hoped that someone else would be able to receive the organ. We then got another call around 10:00 p.m. on December 2nd. That time it was "a go" and my husband received this precious gift on December 3rd. The surgery went very well. He was in the hospital for 5 days. We stayed in a hotel that is attached to the /Washington University Medical School complex through a walkway, for another 10 days. After we got home he has labs done on Monday's and Thursday's. On the 12th day of being home, we got a call that Ron was rejecting. That was on December 29. We loaded up at went back to St. Louis . They did an ultra sound that showed no blockages and then a liver biopsy. The liver biopsy

showed rejection. They increased his prednizone and tweaked a couple of his other meds. He was in the hospital from Monday until Thursday evening (New Year's Day). We came home on Saturday. This morning he had labs again. We got a call from our transplant coordinator this afternoon telling us that there hadn't been as much improvement in his labs as they had wanted. He is to have more labs on Wednesday, instead of Thursday, and if they haven't improved, we'll have to go back down. Needless to say, we are scared and upset. He's starting to feel much better since the transplant. His color is good. In fact, his cheeks are now rosy. We were told that this is not unusual and that it happens to a lot of folks. Ron is afraid he will have to have another transplant. If this one doesn't work, why would another one work? There are so many questions. My husband was 45 when he was diagnosed and he's

now 63. He's a retired firefighter and not a whiner but he is feeling a little weary. We both had a "moment of tears" this afternoon and I think we both feel a little better. We both have a strong faith and I've given this over to God. I keep trying to fix things and I cannot. We would appreciate any advice, suggestions or encouragement that you might have. I've only posted a few times over the last 18 years but I always read what everyone has to say. It's been very helpful during this medical journey. Judy from Central Illinois (wife of Ron..... my hero)

January 5, 2009

Hi Joe,Thanks for your encouragement. It means a lot. I read your e-mail to one of our sons and my husband. They also were encouraged. We're saying prayers and keeping our fingers crossed that his liver enzymes look better on Wednesday. We live in Urbana. Home of the University of Illinois. Go Illini! Judy (wife of Ron)To:

Sent: Monday, January 5, 2009 7:10:27 PMSubject: RE: Rejection Episodes Judy and Ron, I want to relay what the transplant surgeon told my wife and I when we were in the pre-transplant clinic. I asked what would be done if I rejected my new liver. He said rejection is more of an annoyance today than it is a threat. He said that the current meds help make rejection events short lived.

That is almost a direct quote. It put my mind more at ease. I too had a worrisome event after I had progressed well for the first week. My biliruben spiked to 21+ and after feeling great and my color returning to normal, I became jaundiced and had all of the other symptoms - fatigue, loss of appetite, etc. My wife and I cried, complained, and prayed. It turned out that one of the meds they had given me to bolster my immunity for a particular harsh variety of pneumonia was causing my issues. The follow-up hep¢s nurse told me that the first six months are the worst. It gets better after that. Joe PSC & UC 1990; Tx- 10-17-2007 BTW, I am from central Illinois also (near Peoria ). Where are you located?

From: @ yahoogroups. com [mailto:psc- support@yahoogro ups.com] On Behalf Of jrshort45 Sent: Monday, January 05, 2009 5:36 PM To: @ yahoogroups. com Subject: Rejection Episodes Hello to All, My husband was diagnosed with PSC in January of 1991. About 7 years ago he was placed on the Transplant List at Jewish Hospital in St. Louis . His labs, etc. remained stable during that time. I can't remember his Meld score, but as I recall, he was in about the middle of the list. The first part November he had an MRCP and HCC (hepatic cellular carcinoma) was discovered on his liver. That immediately moved him to the top of the transplant list. Within 8 days of being moved to the top of the list we got our first call for a possible

transplant. It was on Friday morning after Thanksgiving. We rushed to St. Louis , we live in Central Illinois , and at 8:00 p.m. that night we were told that it was a "no go". We were disappointed but hoped that someone else would be able to receive the organ. We then got another call around 10:00 p.m. on December 2nd. That time it was "a go" and my husband received this precious gift on December 3rd. The surgery went very well. He was in the hospital for 5 days. We stayed in a hotel that is attached to the /Washington University Medical School complex through a walkway, for another 10 days. After we got home he has labs done on Monday's and Thursday's. On the 12th day of being home, we got a call that Ron was rejecting. That was on December 29. We loaded up at went back to St. Louis . They did an ultra sound that showed no blockages and then a liver biopsy. The liver biopsy

showed rejection. They increased his prednizone and tweaked a couple of his other meds. He was in the hospital from Monday until Thursday evening (New Year's Day). We came home on Saturday. This morning he had labs again. We got a call from our transplant coordinator this afternoon telling us that there hadn't been as much improvement in his labs as they had wanted. He is to have more labs on Wednesday, instead of Thursday, and if they haven't improved, we'll have to go back down. Needless to say, we are scared and upset. He's starting to feel much better since the transplant. His color is good. In fact, his cheeks are now rosy. We were told that this is not unusual and that it happens to a lot of folks. Ron is afraid he will have to have another transplant. If this one doesn't work, why would another one work? There are so many questions. My husband was 45 when he was diagnosed and he's

now 63. He's a retired firefighter and not a whiner but he is feeling a little weary. We both had a "moment of tears" this afternoon and I think we both feel a little better. We both have a strong faith and I've given this over to God. I keep trying to fix things and I cannot. We would appreciate any advice, suggestions or encouragement that you might have. I've only posted a few times over the last 18 years but I always read what everyone has to say. It's been very helpful during this medical journey. Judy from Central Illinois (wife of Ron..... my hero)

January 5, 2009

, thank you so very much for keeping my husband in your prayers. Judy (wife of Ron)To: Sent: Monday, January 5, 2009 5:45:07 PMSubject: Re: Rejection Episodes

Your story has left my eyes a little blury.

I myself kind of put things( my health ) on the back burner. I need to have some time to just move on. My twins help me live life and look at the better things as adults we tend to take for granted.

Well what I wanted to say is time does heal. Live it up when you can. I am sorry for the bad news about the complications in your husbands transfer. I will keep him in my prayers.

I hope to share what ever good thing come . If you ever want to chat we are here.

Sending love , laughter, good energy!

Namaste',

From: jrshort45 <jrshort45 (AT) yahoo (DOT) com>Subject: Rejection EpisodesTo: @ yahoogroups. comDate: Monday, January 5, 2009, 3:36 PM

Hello to All,My husband was diagnosed with PSC in January of 1991. About 7 years ago he was placed on the Transplant List at Jewish Hospital in St. Louis. His labs, etc. remained stable during that time. I can't remember his Meld score, but as I recall, he was in about the middle of the list. The first part November he had an MRCP and HCC (hepatic cellular carcinoma) was discovered on his liver. That immediately moved him to the top of the transplant list. Within 8 days of being moved to the top of the list we got our first call for a possible transplant. It was on Friday morning after Thanksgiving. We rushed to St. Louis, we live in Central Illinois, and at 8:00 p.m. that night we were told that it was a "no go". We were disappointed but hoped that someone else would be able to receive the organ. We then got another call around 10:00 p.m. on December 2nd. That time it was "a go" and my

husband received this precious gift on December 3rd.The surgery went very well. He was in the hospital for 5 days. We stayed in a hotel that is attached to the /Washington University Medical School complex through a walkway, for another 10 days. After we got home he has labs done on Monday's and Thursday's. On the 12th day of being home, we got a call that Ron was rejecting. That was on December 29. We loaded up at went back to St. Louis. They did an ultra sound that showed no blockages and then a liver biopsy. The liver biopsy showed rejection. They increased his prednizone and tweaked a couple of his other meds. He was in the hospital from Monday until Thursday evening (New Year's Day). We came home on Saturday. This morning he had labs again. We got a call from our transplant coordinator this afternoon telling us that there hadn't been as much improvement in his labs as they had wanted. He

is to have more labs on Wednesday, instead of Thursday, and if they haven't improved, we'll have to go back down.Needless to say, we are scared and upset. He's starting to feel much better since the transplant. His color is good. In fact, his cheeks are now rosy. We were told that this is not unusual and that it happens to a lot of folks. Ron is afraid he will have to have another transplant. If this one doesn't work, why would another one work? There are so many questions. My husband was 45 when he was diagnosed and he's now 63. He's a retired firefighter and not a whiner but he is feeling a little weary. We both had a "moment of tears" this afternoon and I think we both feel a little better.We both have a strong faith and I've given this over to God. I keep trying to fix things and I cannot. We would appreciate any advice, suggestions or encouragement that you might have. I've only

posted a few times over the last 18 years but I always read what everyone has to say. It's been very helpful during this medical journey.Judy from Central Illinois (wife of Ron..... my hero)

January 5, 2009

, thank you so very much for keeping my husband in your prayers. Judy (wife of Ron)To: Sent: Monday, January 5, 2009 5:45:07 PMSubject: Re: Rejection Episodes

Your story has left my eyes a little blury.

I myself kind of put things( my health ) on the back burner. I need to have some time to just move on. My twins help me live life and look at the better things as adults we tend to take for granted.

Well what I wanted to say is time does heal. Live it up when you can. I am sorry for the bad news about the complications in your husbands transfer. I will keep him in my prayers.

I hope to share what ever good thing come . If you ever want to chat we are here.

Sending love , laughter, good energy!

Namaste',

From: jrshort45 <jrshort45 (AT) yahoo (DOT) com>Subject: Rejection EpisodesTo: @ yahoogroups. comDate: Monday, January 5, 2009, 3:36 PM

Hello to All,My husband was diagnosed with PSC in January of 1991. About 7 years ago he was placed on the Transplant List at Jewish Hospital in St. Louis. His labs, etc. remained stable during that time. I can't remember his Meld score, but as I recall, he was in about the middle of the list. The first part November he had an MRCP and HCC (hepatic cellular carcinoma) was discovered on his liver. That immediately moved him to the top of the transplant list. Within 8 days of being moved to the top of the list we got our first call for a possible transplant. It was on Friday morning after Thanksgiving. We rushed to St. Louis, we live in Central Illinois, and at 8:00 p.m. that night we were told that it was a "no go". We were disappointed but hoped that someone else would be able to receive the organ. We then got another call around 10:00 p.m. on December 2nd. That time it was "a go" and my

husband received this precious gift on December 3rd.The surgery went very well. He was in the hospital for 5 days. We stayed in a hotel that is attached to the /Washington University Medical School complex through a walkway, for another 10 days. After we got home he has labs done on Monday's and Thursday's. On the 12th day of being home, we got a call that Ron was rejecting. That was on December 29. We loaded up at went back to St. Louis. They did an ultra sound that showed no blockages and then a liver biopsy. The liver biopsy showed rejection. They increased his prednizone and tweaked a couple of his other meds. He was in the hospital from Monday until Thursday evening (New Year's Day). We came home on Saturday. This morning he had labs again. We got a call from our transplant coordinator this afternoon telling us that there hadn't been as much improvement in his labs as they had wanted. He

is to have more labs on Wednesday, instead of Thursday, and if they haven't improved, we'll have to go back down.Needless to say, we are scared and upset. He's starting to feel much better since the transplant. His color is good. In fact, his cheeks are now rosy. We were told that this is not unusual and that it happens to a lot of folks. Ron is afraid he will have to have another transplant. If this one doesn't work, why would another one work? There are so many questions. My husband was 45 when he was diagnosed and he's now 63. He's a retired firefighter and not a whiner but he is feeling a little weary. We both had a "moment of tears" this afternoon and I think we both feel a little better.We both have a strong faith and I've given this over to God. I keep trying to fix things and I cannot. We would appreciate any advice, suggestions or encouragement that you might have. I've only

posted a few times over the last 18 years but I always read what everyone has to say. It's been very helpful during this medical journey.Judy from Central Illinois (wife of Ron..... my hero)

January 5, 2009

, thank you so very much for keeping my husband in your prayers. Judy (wife of Ron)To: Sent: Monday, January 5, 2009 5:45:07 PMSubject: Re: Rejection Episodes

Your story has left my eyes a little blury.

I myself kind of put things( my health ) on the back burner. I need to have some time to just move on. My twins help me live life and look at the better things as adults we tend to take for granted.

Well what I wanted to say is time does heal. Live it up when you can. I am sorry for the bad news about the complications in your husbands transfer. I will keep him in my prayers.

I hope to share what ever good thing come . If you ever want to chat we are here.

Sending love , laughter, good energy!

Namaste',

From: jrshort45 <jrshort45 (AT) yahoo (DOT) com>Subject: Rejection EpisodesTo: @ yahoogroups. comDate: Monday, January 5, 2009, 3:36 PM

Hello to All,My husband was diagnosed with PSC in January of 1991. About 7 years ago he was placed on the Transplant List at Jewish Hospital in St. Louis. His labs, etc. remained stable during that time. I can't remember his Meld score, but as I recall, he was in about the middle of the list. The first part November he had an MRCP and HCC (hepatic cellular carcinoma) was discovered on his liver. That immediately moved him to the top of the transplant list. Within 8 days of being moved to the top of the list we got our first call for a possible transplant. It was on Friday morning after Thanksgiving. We rushed to St. Louis, we live in Central Illinois, and at 8:00 p.m. that night we were told that it was a "no go". We were disappointed but hoped that someone else would be able to receive the organ. We then got another call around 10:00 p.m. on December 2nd. That time it was "a go" and my

husband received this precious gift on December 3rd.The surgery went very well. He was in the hospital for 5 days. We stayed in a hotel that is attached to the /Washington University Medical School complex through a walkway, for another 10 days. After we got home he has labs done on Monday's and Thursday's. On the 12th day of being home, we got a call that Ron was rejecting. That was on December 29. We loaded up at went back to St. Louis. They did an ultra sound that showed no blockages and then a liver biopsy. The liver biopsy showed rejection. They increased his prednizone and tweaked a couple of his other meds. He was in the hospital from Monday until Thursday evening (New Year's Day). We came home on Saturday. This morning he had labs again. We got a call from our transplant coordinator this afternoon telling us that there hadn't been as much improvement in his labs as they had wanted. He

is to have more labs on Wednesday, instead of Thursday, and if they haven't improved, we'll have to go back down.Needless to say, we are scared and upset. He's starting to feel much better since the transplant. His color is good. In fact, his cheeks are now rosy. We were told that this is not unusual and that it happens to a lot of folks. Ron is afraid he will have to have another transplant. If this one doesn't work, why would another one work? There are so many questions. My husband was 45 when he was diagnosed and he's now 63. He's a retired firefighter and not a whiner but he is feeling a little weary. We both had a "moment of tears" this afternoon and I think we both feel a little better.We both have a strong faith and I've given this over to God. I keep trying to fix things and I cannot. We would appreciate any advice, suggestions or encouragement that you might have. I've only

posted a few times over the last 18 years but I always read what everyone has to say. It's been very helpful during this medical journey.Judy from Central Illinois (wife of Ron..... my hero)

January 5, 2009

Your husband and your family are in my thoughts

Dawn

>

> Hello to All,

>

> My husband was diagnosed with PSC in January of 1991. About 7

years ago he was placed

> on the Transplant List at Jewish Hospital in St. Louis. His

labs, etc. remained stable

> during that time. I can't remember his Meld score, but as I

recall, he was in about the

> middle of the list.

>

> The first part November he had an MRCP and HCC (hepatic cellular

carcinoma) was

> discovered on his liver. That immediately moved him to the top of

the transplant list.

> Within 8 days of being moved to the top of the list we got our

first call for a possible

> transplant. It was on Friday morning after Thanksgiving. We

rushed to St. Louis, we live in

> Central Illinois, and at 8:00 p.m. that night we were told that it

was a " no go " . We were

> disappointed but hoped that someone else would be able to receive

the organ. We then

> got another call around 10:00 p.m. on December 2nd. That time it

was " a go " and my

> husband received this precious gift on December 3rd.

>

> The surgery went very well. He was in the hospital for 5 days. We

stayed in a hotel that is

> attached to the /Washington University Medical School complex

through a walkway,

> for another 10 days. After we got home he has labs done on

Monday's and Thursday's. On

> the 12th day of being home, we got a call that Ron was rejecting.

That was on December

> 29. We loaded up at went back to St. Louis.

>

> They did an ultra sound that showed no blockages and then a liver

biopsy. The liver

> biopsy showed rejection. They increased his prednizone and tweaked

a couple of his other

> meds. He was in the hospital from Monday until Thursday evening

(New Year's Day). We

> came home on Saturday. This morning he had labs again. We got a

call from our

> transplant coordinator this afternoon telling us that there hadn't

been as much

> improvement in his labs as they had wanted. He is to have more

labs on Wednesday,

> instead of Thursday, and if they haven't improved, we'll have to go

back down.

>

> Needless to say, we are scared and upset. He's starting to feel

much better since the

> transplant. His color is good. In fact, his cheeks are now rosy.

We were told that this is

> not unusual and that it happens to a lot of folks. Ron is afraid

he will have to have another

> transplant. If this one doesn't work, why would another one work?

There are so many

> questions.

>

> My husband was 45 when he was diagnosed and he's now 63. He's a

retired firefighter

> and not a whiner but he is feeling a little weary. We both had

a " moment of tears " this

> afternoon and I think we both feel a little better.

>

> We both have a strong faith and I've given this over to God. I

keep trying to fix things and

> I cannot. We would appreciate any advice, suggestions or

encouragement that you might

> have.

>

> I've only posted a few times over the last 18 years but I always

read what everyone has to

> say. It's been very helpful during this medical journey.

>

> Judy from Central Illinois (wife of Ron..... my hero)

>

January 5, 2009

Your husband and your family are in my thoughts

Dawn

>

> Hello to All,

>

> My husband was diagnosed with PSC in January of 1991. About 7

years ago he was placed

> on the Transplant List at Jewish Hospital in St. Louis. His

labs, etc. remained stable

> during that time. I can't remember his Meld score, but as I

recall, he was in about the

> middle of the list.

>

> The first part November he had an MRCP and HCC (hepatic cellular

carcinoma) was

> discovered on his liver. That immediately moved him to the top of

the transplant list.

> Within 8 days of being moved to the top of the list we got our

first call for a possible

> transplant. It was on Friday morning after Thanksgiving. We

rushed to St. Louis, we live in

> Central Illinois, and at 8:00 p.m. that night we were told that it

was a " no go " . We were

> disappointed but hoped that someone else would be able to receive

the organ. We then

> got another call around 10:00 p.m. on December 2nd. That time it

was " a go " and my

> husband received this precious gift on December 3rd.

>

> The surgery went very well. He was in the hospital for 5 days. We

stayed in a hotel that is

> attached to the /Washington University Medical School complex

through a walkway,

> for another 10 days. After we got home he has labs done on

Monday's and Thursday's. On

> the 12th day of being home, we got a call that Ron was rejecting.

That was on December

> 29. We loaded up at went back to St. Louis.

>

> They did an ultra sound that showed no blockages and then a liver

biopsy. The liver

> biopsy showed rejection. They increased his prednizone and tweaked

a couple of his other

> meds. He was in the hospital from Monday until Thursday evening

(New Year's Day). We

> came home on Saturday. This morning he had labs again. We got a

call from our

> transplant coordinator this afternoon telling us that there hadn't

been as much

> improvement in his labs as they had wanted. He is to have more

labs on Wednesday,

> instead of Thursday, and if they haven't improved, we'll have to go

back down.

>

> Needless to say, we are scared and upset. He's starting to feel

much better since the

> transplant. His color is good. In fact, his cheeks are now rosy.

We were told that this is

> not unusual and that it happens to a lot of folks. Ron is afraid

he will have to have another

> transplant. If this one doesn't work, why would another one work?

There are so many

> questions.

>

> My husband was 45 when he was diagnosed and he's now 63. He's a

retired firefighter

> and not a whiner but he is feeling a little weary. We both had

a " moment of tears " this

> afternoon and I think we both feel a little better.

>

> We both have a strong faith and I've given this over to God. I

keep trying to fix things and

> I cannot. We would appreciate any advice, suggestions or

encouragement that you might

> have.

>

> I've only posted a few times over the last 18 years but I always

read what everyone has to

> say. It's been very helpful during this medical journey.

>

> Judy from Central Illinois (wife of Ron..... my hero)

>

January 5, 2009

Your husband and your family are in my thoughts

Dawn

>

> Hello to All,

>

> My husband was diagnosed with PSC in January of 1991. About 7

years ago he was placed

> on the Transplant List at Jewish Hospital in St. Louis. His

labs, etc. remained stable

> during that time. I can't remember his Meld score, but as I

recall, he was in about the

> middle of the list.

>

> The first part November he had an MRCP and HCC (hepatic cellular

carcinoma) was

> discovered on his liver. That immediately moved him to the top of

the transplant list.

> Within 8 days of being moved to the top of the list we got our

first call for a possible

> transplant. It was on Friday morning after Thanksgiving. We

rushed to St. Louis, we live in

> Central Illinois, and at 8:00 p.m. that night we were told that it

was a " no go " . We were

> disappointed but hoped that someone else would be able to receive

the organ. We then

> got another call around 10:00 p.m. on December 2nd. That time it

was " a go " and my

> husband received this precious gift on December 3rd.

>

> The surgery went very well. He was in the hospital for 5 days. We

stayed in a hotel that is

> attached to the /Washington University Medical School complex

through a walkway,

> for another 10 days. After we got home he has labs done on

Monday's and Thursday's. On

> the 12th day of being home, we got a call that Ron was rejecting.

That was on December

> 29. We loaded up at went back to St. Louis.

>

> They did an ultra sound that showed no blockages and then a liver

biopsy. The liver

> biopsy showed rejection. They increased his prednizone and tweaked

a couple of his other

> meds. He was in the hospital from Monday until Thursday evening

(New Year's Day). We

> came home on Saturday. This morning he had labs again. We got a

call from our

> transplant coordinator this afternoon telling us that there hadn't

been as much

> improvement in his labs as they had wanted. He is to have more

labs on Wednesday,

> instead of Thursday, and if they haven't improved, we'll have to go

back down.

>

> Needless to say, we are scared and upset. He's starting to feel

much better since the

> transplant. His color is good. In fact, his cheeks are now rosy.

We were told that this is

> not unusual and that it happens to a lot of folks. Ron is afraid

he will have to have another

> transplant. If this one doesn't work, why would another one work?

There are so many

> questions.

>

> My husband was 45 when he was diagnosed and he's now 63. He's a

retired firefighter

> and not a whiner but he is feeling a little weary. We both had

a " moment of tears " this

> afternoon and I think we both feel a little better.

>

> We both have a strong faith and I've given this over to God. I

keep trying to fix things and

> I cannot. We would appreciate any advice, suggestions or

encouragement that you might

> have.

>

> I've only posted a few times over the last 18 years but I always

read what everyone has to

> say. It's been very helpful during this medical journey.

>

> Judy from Central Illinois (wife of Ron..... my hero)

>

January 5, 2009

Hello! Judy

I am new at this bloging thing so bear with me : ) I am sorry to hear about your husbands rejuection episodes

I will pray with all that is in me that God will be done, just remember if God brought you to it he will see you

through it.

I was told almost 5 years ago that I have small duct PSC, but they belive I have had it long than that. It was a

hard thing to belive that I have something that can take my life, but then this still small voice said in my heart I am

right here and I am not going any where! You said that he was a firefighter will you tell him I said thank you for

his service as it a true calling from God. Tell him to think about all the people who he saved in his years of service and

all the wonderful things he has been blessed to do. Also to remember God says Be Still and Know that I am God !

I have a friend who is a fire fighter I should say I have a lot of friends who are fire fighters, but one this one has caught a part

of my heart, but I seem not to be able to tell him what is wrong with me, and I have no idea why. I has your husband am not

a winer or a push over, so I guess I do not want him to think that I want him to feel sorry for me becuase I don't I just would

like to spend more time with him.. Any advice would be of help!

I am here if you ever want to talk!

As Always God Blessings

Tammy

To: Sent: Monday, January 5, 2009 5:36:26 PMSubject: Rejection Episodes

Hello to All,My husband was diagnosed with PSC in January of 1991. About 7 years ago he was placed on the Transplant List at Jewish Hospital in St. Louis. His labs, etc. remained stable during that time. I can't remember his Meld score, but as I recall, he was in about the middle of the list. The first part November he had an MRCP and HCC (hepatic cellular carcinoma) was discovered on his liver. That immediately moved him to the top of the transplant list. Within 8 days of being moved to the top of the list we got our first call for a possible transplant. It was on Friday morning after Thanksgiving. We rushed to St. Louis, we live in Central Illinois, and at 8:00 p.m. that night we were told that it was a "no go". We were disappointed but hoped that someone else would be able to receive the organ. We then got another call around 10:00 p.m. on December 2nd. That time it was "a go" and my

husband received this precious gift on December 3rd.The surgery went very well. He was in the hospital for 5 days. We stayed in a hotel that is attached to the /Washington University Medical School complex through a walkway, for another 10 days. After we got home he has labs done on Monday's and Thursday's. On the 12th day of being home, we got a call that Ron was rejecting. That was on December 29. We loaded up at went back to St. Louis. They did an ultra sound that showed no blockages and then a liver biopsy. The liver biopsy showed rejection. They increased his prednizone and tweaked a couple of his other meds. He was in the hospital from Monday until Thursday evening (New Year's Day). We came home on Saturday. This morning he had labs again. We got a call from our transplant coordinator this afternoon telling us that there hadn't been as much improvement in his labs as they had wanted. He

is to have more labs on Wednesday, instead of Thursday, and if they haven't improved, we'll have to go back down.Needless to say, we are scared and upset. He's starting to feel much better since the transplant. His color is good. In fact, his cheeks are now rosy. We were told that this is not unusual and that it happens to a lot of folks. Ron is afraid he will have to have another transplant. If this one doesn't work, why would another one work? There are so many questions. My husband was 45 when he was diagnosed and he's now 63. He's a retired firefighter and not a whiner but he is feeling a little weary. We both had a "moment of tears" this afternoon and I think we both feel a little better.We both have a strong faith and I've given this over to God. I keep trying to fix things and I cannot. We would appreciate any advice, suggestions or encouragement that you might have. I've only

posted a few times over the last 18 years but I always read what everyone has to say. It's been very helpful during this medical journey.Judy from Central Illinois (wife of Ron..... my hero)

January 5, 2009