My Story

February 9, 2009

Hi,I've been reading the forum messages for quite a while, but I didn't post a lot ( one or two messages to be exact).I just wanted to write my story before going in tomorrow to have my first liver transplant.I am originally from Germany and was diagnosed with PSC and UC 15 years ago. At that time I was around 17 years old and it was quite shocking. ( in hindsight I am happy they found it right away). After the diagnosis my doctors put me on URSO, which worked great for the last 13 years, except for the regular blood work and tests. No itching, no pain, nothing, no elevated LFts. So I did not worry two much about my PSC, but I really struggled with the UC. I spent many years sick with this disease and went through a lot to keep it hidden from family,

friends and work. After sometime I managed to get the UC under control as well. Two years ago I had my first cholangitis attack which wasn't too bad. Had an ERCP, where they found nothing. Soon the values normalized and everything was okay again. Biles looked okay, a little bit narrowed, but nothing to worry. That's what I thought and my doctors too, since my blood work and the ultra sonic looked great. The next two years my levels also looked good and I had no problems. I moved to the US, my doctors they had no problem with that at all. Once there, I found new doctors who have done a great job. Everything was going okay until the end of October. Some LFTs started to spike. So I had an MRCP, ERCP, EUS and some additional blood work.The results where quite devastating: A ton of stones were found in my liver and huge bags of bile filled with stones at the end of the branches of

the liver. Addtionally my CA 19-9

started to elevate. As a result of this they wanted me to have a transplant as soon as possible.With this condition, there was really no way to get close to the stones with an ERCP, and it would need also to many anyway. The risk of infection was to big, especially with these bags at the end of my biles. My doctors feared that I could get an infection because the bags with the stones were too hard to reach by antibiotics, since not a lot of blood was coming to this area. This could make the situation so bad that I would not be eligible for a transplant.After getting over this shock I went to two different hospitals to get there opinion.All of the hospitals said the same thing. I needed a transplant and sooner rather than later.There is no way out of the transplant ( the risk for cancer and seroius infection is too high)Unfortunately they also told me, that my MELD score does not present the risks I inherit. That means I

would have to wait a long time on the transplant list before I would be eligible. This was not great news.The good part of the story is that my fiancee was a match for me an volunteered to be a donor, even though we are perfect match I wasn't thrilled about the decision It has been difficult for her to except what is happening and we have struggled with our situation but we both believe this is the best choice for us. Hearing that she would recieve her care for Dr. Humar made me feel more secure about all of this. We are one of his last patients in Minnesota before he leaves to take on UPMC. So why did write all this down? I honestly just felt the urge to share my story before I go tomorrow to my transplant surgery :-)HardyPS: To all moms and dads whose children have PSC:) I finished my studies ( it took me a little bit longer than normal, but who really cares :-)), got a

really good job, went abroad and started even my second master's part time. And I am confident, that I will finish my second degree after all of this is over. So what I want to say is: your kids can live their life like everybody else, achive their goals, study what they want, everything is still possible and open to them.

February 9, 2009

I am pleased you shared your story. Thank you so very much.

I will be in prayer for you and your fiance and family.

Please let us know how you are doing.

Wishing you every blessing ,

Dawn

My Story

Hi,I've been reading the forum messages for quite a while, but I didn't post a lot ( one or two messages to be exact).I just wanted to write my story before going in tomorrow to have my first liver transplant.I am originally from Germany and was diagnosed with PSC and UC 15 years ago. At that time I was around 17 years old and it was quite shocking. ( in hindsight I am happy they found it right away). After the diagnosis my doctors put me on URSO, which worked great for the last 13 years, except for the regular blood work and tests. No itching, no pain, nothing, no elevated LFts. So I did not worry two much about my PSC, but I really struggled with the UC. I spent many years sick with this disease and went through a lot to keep it hidden from family, friends and work. After sometime I managed to get the UC under control as well. Two years ago I had my first cholangitis attack which wasn't too bad. Had an ERCP, where they found nothing. Soon the values normalized and everything was okay again. Biles looked okay, a little bit narrowed, but nothing to worry. That's what I thought and my doctors too, since my blood work and the ultra sonic looked great. The next two years my levels also looked good and I had no problems. I moved to the US, my doctors they had no problem with that at all. Once there, I found new doctors who have done a great job. Everything was going okay until the end of October. Some LFTs started to spike. So I had an MRCP, ERCP, EUS and some additional blood work.The results where quite devastating: A ton of stones were found in my liver and huge bags of bile filled with stones at the end of the branches of the liver. Addtionally my CA 19-9 started to elevate. As a result of this they wanted me to have a transplant as soon as possible.With this condition, there was really no way to get close to the stones with an ERCP, and it would need also to many anyway. The risk of infection was to big, especially with these bags at the end of my biles. My doctors feared that I could get an infection because the bags with the stones were too hard to reach by antibiotics, since not a lot of blood was coming to this area. This could make the situation so bad that I would not be eligible for a transplant.After getting over this shock I went to two different hospitals to get there opinion.All of the hospitals said the same thing. I needed a transplant and sooner rather than later.There is no way out of the transplant ( the risk for cancer and seroius infection is too high)Unfortunately they also told me, that my MELD score does not present the risks I inherit. That means I would have to wait a long time on the transplant list before I would be eligible. This was not great news.The good part of the story is that my fiancee was a match for me an volunteered to be a donor, even though we are perfect match I wasn't thrilled about the decision It has been difficult for her to except what is happening and we have struggled with our situation but we both believe this is the best choice for us. Hearing that she would recieve her care for Dr. Humar made me feel more secure about all of this. We are one of his last patients in Minnesota before he leaves to take on UPMC. So why did write all this down? I honestly just felt the urge to share my story before I go tomorrow to my transplant surgery :-)HardyPS: To all moms and dads whose children have PSC:) I finished my studies ( it took me a little bit longer than normal, but who really cares :-)), got a really good job, went abroad and started even my second master's part time. And I am confident, that I will finish my second degree after all of this is over. So what I want to say is: your kids can live their life like everybody else, achive their goals, study what they want, everything is still possible and open to them.

February 9, 2009

I am pleased you shared your story. Thank you so very much.

I will be in prayer for you and your fiance and family.

Please let us know how you are doing.

Wishing you every blessing ,

Dawn

My Story

Hi,I've been reading the forum messages for quite a while, but I didn't post a lot ( one or two messages to be exact).I just wanted to write my story before going in tomorrow to have my first liver transplant.I am originally from Germany and was diagnosed with PSC and UC 15 years ago. At that time I was around 17 years old and it was quite shocking. ( in hindsight I am happy they found it right away). After the diagnosis my doctors put me on URSO, which worked great for the last 13 years, except for the regular blood work and tests. No itching, no pain, nothing, no elevated LFts. So I did not worry two much about my PSC, but I really struggled with the UC. I spent many years sick with this disease and went through a lot to keep it hidden from family, friends and work. After sometime I managed to get the UC under control as well. Two years ago I had my first cholangitis attack which wasn't too bad. Had an ERCP, where they found nothing. Soon the values normalized and everything was okay again. Biles looked okay, a little bit narrowed, but nothing to worry. That's what I thought and my doctors too, since my blood work and the ultra sonic looked great. The next two years my levels also looked good and I had no problems. I moved to the US, my doctors they had no problem with that at all. Once there, I found new doctors who have done a great job. Everything was going okay until the end of October. Some LFTs started to spike. So I had an MRCP, ERCP, EUS and some additional blood work.The results where quite devastating: A ton of stones were found in my liver and huge bags of bile filled with stones at the end of the branches of the liver. Addtionally my CA 19-9 started to elevate. As a result of this they wanted me to have a transplant as soon as possible.With this condition, there was really no way to get close to the stones with an ERCP, and it would need also to many anyway. The risk of infection was to big, especially with these bags at the end of my biles. My doctors feared that I could get an infection because the bags with the stones were too hard to reach by antibiotics, since not a lot of blood was coming to this area. This could make the situation so bad that I would not be eligible for a transplant.After getting over this shock I went to two different hospitals to get there opinion.All of the hospitals said the same thing. I needed a transplant and sooner rather than later.There is no way out of the transplant ( the risk for cancer and seroius infection is too high)Unfortunately they also told me, that my MELD score does not present the risks I inherit. That means I would have to wait a long time on the transplant list before I would be eligible. This was not great news.The good part of the story is that my fiancee was a match for me an volunteered to be a donor, even though we are perfect match I wasn't thrilled about the decision It has been difficult for her to except what is happening and we have struggled with our situation but we both believe this is the best choice for us. Hearing that she would recieve her care for Dr. Humar made me feel more secure about all of this. We are one of his last patients in Minnesota before he leaves to take on UPMC. So why did write all this down? I honestly just felt the urge to share my story before I go tomorrow to my transplant surgery :-)HardyPS: To all moms and dads whose children have PSC:) I finished my studies ( it took me a little bit longer than normal, but who really cares :-)), got a really good job, went abroad and started even my second master's part time. And I am confident, that I will finish my second degree after all of this is over. So what I want to say is: your kids can live their life like everybody else, achive their goals, study what they want, everything is still possible and open to them.

February 9, 2009

I am pleased you shared your story. Thank you so very much.

I will be in prayer for you and your fiance and family.

Please let us know how you are doing.

Wishing you every blessing ,

Dawn

My Story

Hi,I've been reading the forum messages for quite a while, but I didn't post a lot ( one or two messages to be exact).I just wanted to write my story before going in tomorrow to have my first liver transplant.I am originally from Germany and was diagnosed with PSC and UC 15 years ago. At that time I was around 17 years old and it was quite shocking. ( in hindsight I am happy they found it right away). After the diagnosis my doctors put me on URSO, which worked great for the last 13 years, except for the regular blood work and tests. No itching, no pain, nothing, no elevated LFts. So I did not worry two much about my PSC, but I really struggled with the UC. I spent many years sick with this disease and went through a lot to keep it hidden from family, friends and work. After sometime I managed to get the UC under control as well. Two years ago I had my first cholangitis attack which wasn't too bad. Had an ERCP, where they found nothing. Soon the values normalized and everything was okay again. Biles looked okay, a little bit narrowed, but nothing to worry. That's what I thought and my doctors too, since my blood work and the ultra sonic looked great. The next two years my levels also looked good and I had no problems. I moved to the US, my doctors they had no problem with that at all. Once there, I found new doctors who have done a great job. Everything was going okay until the end of October. Some LFTs started to spike. So I had an MRCP, ERCP, EUS and some additional blood work.The results where quite devastating: A ton of stones were found in my liver and huge bags of bile filled with stones at the end of the branches of the liver. Addtionally my CA 19-9 started to elevate. As a result of this they wanted me to have a transplant as soon as possible.With this condition, there was really no way to get close to the stones with an ERCP, and it would need also to many anyway. The risk of infection was to big, especially with these bags at the end of my biles. My doctors feared that I could get an infection because the bags with the stones were too hard to reach by antibiotics, since not a lot of blood was coming to this area. This could make the situation so bad that I would not be eligible for a transplant.After getting over this shock I went to two different hospitals to get there opinion.All of the hospitals said the same thing. I needed a transplant and sooner rather than later.There is no way out of the transplant ( the risk for cancer and seroius infection is too high)Unfortunately they also told me, that my MELD score does not present the risks I inherit. That means I would have to wait a long time on the transplant list before I would be eligible. This was not great news.The good part of the story is that my fiancee was a match for me an volunteered to be a donor, even though we are perfect match I wasn't thrilled about the decision It has been difficult for her to except what is happening and we have struggled with our situation but we both believe this is the best choice for us. Hearing that she would recieve her care for Dr. Humar made me feel more secure about all of this. We are one of his last patients in Minnesota before he leaves to take on UPMC. So why did write all this down? I honestly just felt the urge to share my story before I go tomorrow to my transplant surgery :-)HardyPS: To all moms and dads whose children have PSC:) I finished my studies ( it took me a little bit longer than normal, but who really cares :-)), got a really good job, went abroad and started even my second master's part time. And I am confident, that I will finish my second degree after all of this is over. So what I want to say is: your kids can live their life like everybody else, achive their goals, study what they want, everything is still possible and open to them.

February 9, 2009

Hardy.....Please get someone to list you and your wonderful fiancee with

http://www.caringbridge.org

Our prayers to you both and gods speed to a quick recovery!

Don PSC/UC -11-08

To: Sent: Monday, February 9, 2009 9:18:10 PMSubject: Re: My Story

-HardyThat is so amazing that you are doing the live donor option. My husband went through the evaluation process to be my live donor, two weeks ago we found out he would not be able to donate. His liver is too small. Its an incredible thing that someone would volunteer to be so selfless to give another person their life back. You guys will be in my thoughts and prayers. Serbrina-- In @ yahoogroups. com, Hartmut Durchschlag wrote:>> Hi,> > I've been reading the forum messages for quite a while, but I didn't post a lot ( one or two messages to be exact).> I just wanted to write my story before going in tomorrow to have my first liver transplant.> > I am originally from Germany and was diagnosed with PSC and UC 15

years ago. At that time I was around 17 years old and it was quite shocking. ( in hindsight I am happy they found it right away). After the diagnosis my doctors put me on URSO, which worked great for the last 13 years, except for the regular blood work and tests. No itching, no pain, nothing, no elevated LFts. So I did not worry two much about my PSC, but I really struggled with the UC. I spent many years sick with this disease and went through a lot to keep it hidden from family, friends and work. > After sometime I managed to get the UC under control as well. Two years ago I had my first cholangitis attack which wasn't too bad. Had an ERCP, where they found nothing. Soon the values normalized and everything was okay again. Biles looked okay, a little bit narrowed, but nothing to worry. That's what I thought and my doctors too, since my blood work and the ultra sonic looked great. > The next two

years my levels also looked good and I had no problems. I moved to the US, my doctors they had no problem with that at all. > Once there, I found new doctors who have done a great job. Everything was going okay until the end of October. Some LFTs started to spike. So I had an MRCP, ERCP, EUS and some additional blood work.> The results where quite devastating: A ton of stones were found in my liver and huge bags of bile filled with stones at the end of the branches of the liver. Addtionally my CA 19-9 started to elevate. > As a result of this they wanted me to have a transplant as soon as possible.> With this condition, there was really no way to get close to the stones with an ERCP, and it would need also to many anyway. The risk of infection was to big, especially with these bags at the end of my biles. My doctors feared that I could get an infection because the bags with the stones were too

hard to reach by antibiotics, since not a lot of blood was coming to this area. This could make the situation so bad that I would not be eligible for a transplant.> After getting over this shock I went to two different hospitals to get there opinion.> All of the hospitals said the same thing. I needed a transplant and sooner rather than later.> There is no way out of the transplant ( the risk for cancer and seroius infection is too high)> > Unfortunately they also told me, that my MELD score does not present the risks I inherit. That means I would have to wait a long time on the transplant list before I would be eligible. This was not great news.> > The good part of the story is that my fiancee was a match for me an volunteered to be a donor, even though we are perfect match I wasn't thrilled about the decision It has been difficult for her to except what is happening and

we have struggled with our situation but we both believe this is the best choice for us. Hearing that she would recieve her care for Dr. Humar made me feel more secure about all of this. We are one of his last patients in Minnesota before he leaves to take on UPMC.> > > So why did write all this down? I honestly just felt the urge to share my story before I go tomorrow to my transplant surgery :-)> > Hardy> > PS: To all moms and dads whose children have PSC:)> I finished my studies ( it took me a little bit longer than normal, but who really cares :-)), got a really good job, went abroad and started even my second master's part time. And I am confident, that I will finish my second degree after all of this is over. So what I want to say is: your kids can live their life like everybody else, achive their goals, study what they want, everything is still possible and

open to them.>

February 9, 2009

Hardy.....Please get someone to list you and your wonderful fiancee with

http://www.caringbridge.org

Our prayers to you both and gods speed to a quick recovery!

Don PSC/UC -11-08

To: Sent: Monday, February 9, 2009 9:18:10 PMSubject: Re: My Story

-HardyThat is so amazing that you are doing the live donor option. My husband went through the evaluation process to be my live donor, two weeks ago we found out he would not be able to donate. His liver is too small. Its an incredible thing that someone would volunteer to be so selfless to give another person their life back. You guys will be in my thoughts and prayers. Serbrina-- In @ yahoogroups. com, Hartmut Durchschlag wrote:>> Hi,> > I've been reading the forum messages for quite a while, but I didn't post a lot ( one or two messages to be exact).> I just wanted to write my story before going in tomorrow to have my first liver transplant.> > I am originally from Germany and was diagnosed with PSC and UC 15

years ago. At that time I was around 17 years old and it was quite shocking. ( in hindsight I am happy they found it right away). After the diagnosis my doctors put me on URSO, which worked great for the last 13 years, except for the regular blood work and tests. No itching, no pain, nothing, no elevated LFts. So I did not worry two much about my PSC, but I really struggled with the UC. I spent many years sick with this disease and went through a lot to keep it hidden from family, friends and work. > After sometime I managed to get the UC under control as well. Two years ago I had my first cholangitis attack which wasn't too bad. Had an ERCP, where they found nothing. Soon the values normalized and everything was okay again. Biles looked okay, a little bit narrowed, but nothing to worry. That's what I thought and my doctors too, since my blood work and the ultra sonic looked great. > The next two

years my levels also looked good and I had no problems. I moved to the US, my doctors they had no problem with that at all. > Once there, I found new doctors who have done a great job. Everything was going okay until the end of October. Some LFTs started to spike. So I had an MRCP, ERCP, EUS and some additional blood work.> The results where quite devastating: A ton of stones were found in my liver and huge bags of bile filled with stones at the end of the branches of the liver. Addtionally my CA 19-9 started to elevate. > As a result of this they wanted me to have a transplant as soon as possible.> With this condition, there was really no way to get close to the stones with an ERCP, and it would need also to many anyway. The risk of infection was to big, especially with these bags at the end of my biles. My doctors feared that I could get an infection because the bags with the stones were too

hard to reach by antibiotics, since not a lot of blood was coming to this area. This could make the situation so bad that I would not be eligible for a transplant.> After getting over this shock I went to two different hospitals to get there opinion.> All of the hospitals said the same thing. I needed a transplant and sooner rather than later.> There is no way out of the transplant ( the risk for cancer and seroius infection is too high)> > Unfortunately they also told me, that my MELD score does not present the risks I inherit. That means I would have to wait a long time on the transplant list before I would be eligible. This was not great news.> > The good part of the story is that my fiancee was a match for me an volunteered to be a donor, even though we are perfect match I wasn't thrilled about the decision It has been difficult for her to except what is happening and

we have struggled with our situation but we both believe this is the best choice for us. Hearing that she would recieve her care for Dr. Humar made me feel more secure about all of this. We are one of his last patients in Minnesota before he leaves to take on UPMC.> > > So why did write all this down? I honestly just felt the urge to share my story before I go tomorrow to my transplant surgery :-)> > Hardy> > PS: To all moms and dads whose children have PSC:)> I finished my studies ( it took me a little bit longer than normal, but who really cares :-)), got a really good job, went abroad and started even my second master's part time. And I am confident, that I will finish my second degree after all of this is over. So what I want to say is: your kids can live their life like everybody else, achive their goals, study what they want, everything is still possible and

open to them.>

February 9, 2009

Hardy.....Please get someone to list you and your wonderful fiancee with

http://www.caringbridge.org

Our prayers to you both and gods speed to a quick recovery!

Don PSC/UC -11-08

To: Sent: Monday, February 9, 2009 9:18:10 PMSubject: Re: My Story

-HardyThat is so amazing that you are doing the live donor option. My husband went through the evaluation process to be my live donor, two weeks ago we found out he would not be able to donate. His liver is too small. Its an incredible thing that someone would volunteer to be so selfless to give another person their life back. You guys will be in my thoughts and prayers. Serbrina-- In @ yahoogroups. com, Hartmut Durchschlag wrote:>> Hi,> > I've been reading the forum messages for quite a while, but I didn't post a lot ( one or two messages to be exact).> I just wanted to write my story before going in tomorrow to have my first liver transplant.> > I am originally from Germany and was diagnosed with PSC and UC 15

years ago. At that time I was around 17 years old and it was quite shocking. ( in hindsight I am happy they found it right away). After the diagnosis my doctors put me on URSO, which worked great for the last 13 years, except for the regular blood work and tests. No itching, no pain, nothing, no elevated LFts. So I did not worry two much about my PSC, but I really struggled with the UC. I spent many years sick with this disease and went through a lot to keep it hidden from family, friends and work. > After sometime I managed to get the UC under control as well. Two years ago I had my first cholangitis attack which wasn't too bad. Had an ERCP, where they found nothing. Soon the values normalized and everything was okay again. Biles looked okay, a little bit narrowed, but nothing to worry. That's what I thought and my doctors too, since my blood work and the ultra sonic looked great. > The next two

years my levels also looked good and I had no problems. I moved to the US, my doctors they had no problem with that at all. > Once there, I found new doctors who have done a great job. Everything was going okay until the end of October. Some LFTs started to spike. So I had an MRCP, ERCP, EUS and some additional blood work.> The results where quite devastating: A ton of stones were found in my liver and huge bags of bile filled with stones at the end of the branches of the liver. Addtionally my CA 19-9 started to elevate. > As a result of this they wanted me to have a transplant as soon as possible.> With this condition, there was really no way to get close to the stones with an ERCP, and it would need also to many anyway. The risk of infection was to big, especially with these bags at the end of my biles. My doctors feared that I could get an infection because the bags with the stones were too

hard to reach by antibiotics, since not a lot of blood was coming to this area. This could make the situation so bad that I would not be eligible for a transplant.> After getting over this shock I went to two different hospitals to get there opinion.> All of the hospitals said the same thing. I needed a transplant and sooner rather than later.> There is no way out of the transplant ( the risk for cancer and seroius infection is too high)> > Unfortunately they also told me, that my MELD score does not present the risks I inherit. That means I would have to wait a long time on the transplant list before I would be eligible. This was not great news.> > The good part of the story is that my fiancee was a match for me an volunteered to be a donor, even though we are perfect match I wasn't thrilled about the decision It has been difficult for her to except what is happening and

we have struggled with our situation but we both believe this is the best choice for us. Hearing that she would recieve her care for Dr. Humar made me feel more secure about all of this. We are one of his last patients in Minnesota before he leaves to take on UPMC.> > > So why did write all this down? I honestly just felt the urge to share my story before I go tomorrow to my transplant surgery :-)> > Hardy> > PS: To all moms and dads whose children have PSC:)> I finished my studies ( it took me a little bit longer than normal, but who really cares :-)), got a really good job, went abroad and started even my second master's part time. And I am confident, that I will finish my second degree after all of this is over. So what I want to say is: your kids can live their life like everybody else, achive their goals, study what they want, everything is still possible and

open to them.>

February 9, 2009

Hardy,

Thankyou for sharing your encouraging story. Godspeed to you and your fiancee. If you do, as Don suggests, get a caringbridge site setup and find someone to update it for you. I am willing to copy the updates and post them (with a link) for this group.

Ian (52) PSC 89

Hardy.....Please get someone to list you and your wonderful fiancee with

http://www.caringbridge.org

Our prayers to you both and gods speed to a quick recovery!

Don PSC/UC -11-08

To: Sent: Monday, February 9, 2009 9:18:10 PM

Subject: Re: My Story

-HardyThat is so amazing that you are doing the live donor option. My husband went through the evaluation process to be my live donor, two weeks ago we found out he would not be able to donate. His liver is too small. Its an incredible thing that someone would volunteer

to be so selfless to give another person their life back. You guys will be in my thoughts and prayers. Serbrina-- In @ yahoogroups. com, Hartmut Durchschlag wrote:

>> Hi,> > I've been reading the forum messages for quite a while, but I didn't post a lot ( one or two messages to be exact).> I just wanted to write my story before going in tomorrow to have my first liver

transplant.> > I am originally from Germany and was diagnosed with PSC and UC 15 years ago. At that time I was around 17 years old and it was quite shocking. ( in hindsight I am happy they found it right away). After the diagnosis my doctors put me on URSO, which worked great

for the last 13 years, except for the regular blood work and tests. No itching, no pain, nothing, no elevated LFts. So I did not worry two much about my PSC, but I really struggled with the UC. I spent many years sick with this disease and went through a lot to

keep it hidden from family, friends and work. > After sometime I managed to get the UC under control as well. Two years ago I had my first cholangitis attack which wasn't too bad. Had an ERCP, where they found nothing.

Soon the values normalized and everything was okay again. Biles looked okay, a little bit narrowed, but nothing to worry. That's what I thought and my doctors too, since my blood work and the ultra sonic looked great.

> The next two years my levels also looked good and I had no problems. I moved to the US, my doctors they had no problem with that at all. > Once there, I found new doctors who have done a great job. Everything was going okay

until the end of October. Some LFTs started to spike. So I had an MRCP, ERCP, EUS and some additional blood work.> The results where quite devastating: A ton of stones were found in my liver and huge bags of bile filled with stones at the end of the branches of the liver. Addtionally my CA

19-9 started to elevate. > As a result of this they wanted me to have a transplant as soon as possible.> With this condition, there was really no way to get close to the stones with an ERCP, and it would need also to many anyway. The risk of infection was to big, especially with these

bags at the end of my biles. My doctors feared that I could get an infection because the bags with the stones were too hard to reach by antibiotics, since not a lot of blood was coming to this area. This could make the situation so bad that I would not be eligible for a

transplant.> After getting over this shock I went to two different hospitals to get there opinion.> All of the hospitals said the same thing. I needed a transplant and sooner rather than later.> There is no way out of the transplant ( the risk for cancer and seroius infection is too

high)> > Unfortunately they also told me, that my MELD score does not present the risks I inherit. That means I would have to wait a long time on the transplant list before I would be eligible. This was not great news.

> > The good part of the story is that my fiancee was a match for me an volunteered to be a donor, even though we are perfect match I wasn't thrilled about the decision It has been difficult for her to except what is happening and we have struggled with our situation but

we both believe this is the best choice for us. Hearing that she would recieve her care for Dr. Humar made me feel more secure about all of this. We are one of his last patients in Minnesota before he leaves to take on UPMC.

> > > So why did write all this down? I honestly just felt the urge to share my story before I go tomorrow to my transplant surgery :-)> > Hardy> > PS: To all moms and dads whose children have PSC:)

> I finished my studies ( it took me a little bit longer than normal, but who really cares :-)), got a really good job, went abroad and started even my second master's part time. And I am confident, that I will finish my second degree after all of this is over. So what I want to

say is: your kids can live their life like everybody else, achive their goals, study what they want, everything is still possible and open to them.>

-- Ian Cribb P.Eng. (6...

February 9, 2009