My Story

[Guest guest]

Dear Tammy,

Your story touched my heart. Faith in God, cooperation and support from family

members can do wonders. This is what we need. I wish and pray for you and your

family. Good luck.

Best regards

Bobby

PLY72DUSTER@... wrote: First I would like to thank everyone for their kind

words and for a place

that we can come together and talk about out illness.

In January of 1990 I was diagnosed with pancreatitis. In April of 1990

and I got married. I would have bad attacks and when he would take me

to the ER; sometimes I felt like he would get upset with me. The pain was so

bad that I couldn't sit still, I would go around and around in circles. And

all I could do was plead for someone to help me. On my first Anniversary

April 1991, I was in the hospital have my GB removed with 40 stones. In

August of 1991 I found out that I was 2 months pregnant. I was so excited, my

first child. My sister and my cousin was also pregnant at the same time. We

had big plans, it was our first child. But in September I started having some

real bad pain. I was put in the hospital for a 24 hour watch. The nurse told

the doctor that I wasn't able to go home. I was placed in the woman's center.

In October I was 20 weeks Pregnant and I had my appendix removed. When I came

back from surgery I thought it was weird, that I couldn't lay on my left

side, but I could lay on the right side ( The side I was just cut on). I went

home for 2 days. And was back in the hospital for pain in the left side. One

of my doctors came in and told me that there was nothing that they could do,

because I was pregnant. They needed to do a CT scan, but wouldn't because of

the baby inside me. I could feel the attacks coming on and all I could do was

get out of the bed and scream. I felt like I was on fire, and I wanted them

to put me in atub of ice. I was getting Demerol 100mg every 2 hours and I was

on a pain pump that would give me Demerol every 30 min. I was also getting

phenergan, Even though I had a NG Tube I was still very nausea and throwing

up. I couldn't lay down in the bed. I slept sitting straight up in the bed.

Finally I told the doctor that I was going to die, she needed to do what she

had to make the pain stop. I was sent for a CT Scan at 4:00am and found out

that I had a Pseudocyst. I was taken down stairs and a very large needle was

inserted into the pancreas to drain the fluid. Well, the fluid was too thick

to drain. A few days later I was put to sleep and a drain tube was inserted.

It didn't work, The fluid was too thick. On Friday December 13,1991 I was

taken down for surgery. The doctor cut a whole into the cyst so that it would

drain into the stomach. I was placed into ICU.

I was 29 weeks pregnant. My sugar was so hi and they couldn't get it to come

down, they just gave me a bag of Insulin and would come in every hour to

check my sugar.

On Sunday December 15. ( Two days later) My husband to make a choice. It was

either me live or the baby live. My husband prayed and prayed for an answer.

My blood pressure had gotten so Hi that they had to take the baby. She

weighted 2 lbs and 7 oz. And was 21 inches long. Before they took her, they

gave me a shot to help her lungs produce faster. She was placed in the NICU

unit on the 3rd floor. I was taken back to the ICU on the 2nd floor. It was 4

days before I got to see her. She was so tiny, all I could think was what

have I done. If I wasn't sick she would be all right. That night I was let

out of ICU and placed on a regular floor. I was there for 2 weeks. About

3:00am I started throwing up blood. And was but back inthe ICU. This was my

2nd blood transfusion. February the 5th I was able to come home from the

hospital. My daughter got to come home on February 10th. She weighted 4 lbs

and 5 oz. She is now 10 years old and almost as tall as me.

My days of pancreatitis wasn't over. I was in and out of the hospital for

years. I drove my husband crazy. But he loved me enough to stick with me.

(Even though people tried to get him to leave me.)

In October of 1995 I was sent to ton, SC at MUSC for test. There I had

the stint placed into the pancreatic duct. It just made things worse. I ended

up having a Peustow done and having another blood transfusion. I was in SC

for 1 month.

After the recovery I started seeing signs of improvement.

In April of 1999, I had to have a hysterectomy done. I had cancer cells, that

were burned and frozen several times, but kept coming back. That surgery has

really helped also with the pain from the pancreatitis.

I still hurt and have very few days where I don't have any pain. But God has

helped me to deal with it. And I know my limits. When the pain starts getting

bad I put myself on the liquid diet. I have great support from my family ( MY

DAD AND BOTH OF MY SISTERS ALSO HAVE PANCREATITIS) and friends.

Thanks for letting me share my story with you.

Tammy in TN

[Guest guest]

,

You will be in my prayers. Please keep us informed on how things are going.

Tammy

[Guest guest]

,

Sorry to note that you are not doing well. But sure that you can manage it as

you have the confidence and hope. Keep in touch. Let us hope that it is not

related to pancreas but if you are diabetic then it should do something with

your pancreas. Wish you good luck.

Brother

Bobby

susanr6726 susanr@...> wrote: I am not sure if I even suffer from

pancreatitis, but my symptoms are

almost identical to what I have read on this site and others.

4 weeks ago I attended my local ER suffering from upper abdominal

pain, vomiting, back pain and dehydration. I had also lost 6kg in a

week. As I am a diabetic it was extremely important for me to find

the cause as soon as possible.

My doctor, who happended to be on call at the time suggested that it

could be a reaction to a general aenesthetic that I had three days

earlier. I was admitted to hospital and stayed for three days while

they rehydrated me and did some blood tests.

4 days later I was back at the ER and this time I was told that I had

pelvic inflamitory disease. I stayed at the ER until my doctor came

in, he then admitted me again for another three days. On the day of

my discharge he suggested that perhaps I had problems at home that I

wasm't dealing with, or perhaps it was the medication that I was

taking. I actually thought that I was happy with my life. But hey

he was my doctor.

Pain continued, vomiting continued, sugar levels impossible to

stabilize. So I went to another Doctor, he did the same blood tests,

neither checked amylase or lipase levels. and sent me home with anti-

nausea drugs and pain killers.

saw him again a week later and basically insisted on an ultrasound

scan, he agreed. Got the results today, saying that I have either a

mesenteric or other cyst on or attached to my pancreas, either way my

pancreas was involved.

I left a message for my previous DR to ring me, but surprise,

surprise he hasn't so far. Just wait until I catch up with him.

Anyway that is my story so far, I have to have a CT scan and then

surgery to remove or drain the cyst, and guess what, my old DR is the

local aenethesist.

will keep you up to date on what happens next, keep your chins up

people, and never lose hope.

[Guest guest]

,

wanted to welcome you to the group and that I hope you get

your cyst taken care of. Definitely going to be interesting

with your old Dr. having to get involved.

Kimber

--

Kimber

hominid2@...

Southwest Representative

Pancreatitis Association, International

[Guest guest]

Thanks Tammy,

I really needed that. I will be calling you tomorrow, AM if that is okay. I

mean it, I really did need to know your story.

Hope you have a great night.

Joy

My story

First I would like to thank everyone for their kind words and for a place

that we can come together and talk about out illness.

In January of 1990 I was diagnosed with pancreatitis. In April of 1990

and I got married. I would have bad attacks and when he would take me

to the ER; sometimes I felt like he would get upset with me. The pain was so

bad that I couldn't sit still, I would go around and around in circles. And

all I could do was plead for someone to help me. On my first Anniversary

April 1991, I was in the hospital have my GB removed with 40 stones. In

August of 1991 I found out that I was 2 months pregnant. I was so excited, my

first child. My sister and my cousin was also pregnant at the same time. We

had big plans, it was our first child. But in September I started having some

real bad pain. I was put in the hospital for a 24 hour watch. The nurse told

the doctor that I wasn't able to go home. I was placed in the woman's center.

In October I was 20 weeks Pregnant and I had my appendix removed. When I came

back from surgery I thought it was weird, that I couldn't lay on my left

side, but I could lay on the right side ( The side I was just cut on). I went

home for 2 days. And was back in the hospital for pain in the left side. One

of my doctors came in and told me that there was nothing that they could do,

because I was pregnant. They needed to do a CT scan, but wouldn't because of

the baby inside me. I could feel the attacks coming on and all I could do was

get out of the bed and scream. I felt like I was on fire, and I wanted them

to put me in atub of ice. I was getting Demerol 100mg every 2 hours and I was

on a pain pump that would give me Demerol every 30 min. I was also getting

phenergan, Even though I had a NG Tube I was still very nausea and throwing

up. I couldn't lay down in the bed. I slept sitting straight up in the bed.

Finally I told the doctor that I was going to die, she needed to do what she

had to make the pain stop. I was sent for a CT Scan at 4:00am and found out

that I had a Pseudocyst. I was taken down stairs and a very large needle was

inserted into the pancreas to drain the fluid. Well, the fluid was too thick

to drain. A few days later I was put to sleep and a drain tube was inserted.

It didn't work, The fluid was too thick. On Friday December 13,1991 I was

taken down for surgery. The doctor cut a whole into the cyst so that it would

drain into the stomach. I was placed into ICU.

I was 29 weeks pregnant. My sugar was so hi and they couldn't get it to come

down, they just gave me a bag of Insulin and would come in every hour to

check my sugar.

On Sunday December 15. ( Two days later) My husband to make a choice. It was

either me live or the baby live. My husband prayed and prayed for an answer.

My blood pressure had gotten so Hi that they had to take the baby. She

weighted 2 lbs and 7 oz. And was 21 inches long. Before they took her, they

gave me a shot to help her lungs produce faster. She was placed in the NICU

unit on the 3rd floor. I was taken back to the ICU on the 2nd floor. It was 4

days before I got to see her. She was so tiny, all I could think was what

have I done. If I wasn't sick she would be all right. That night I was let

out of ICU and placed on a regular floor. I was there for 2 weeks. About

3:00am I started throwing up blood. And was but back inthe ICU. This was my

2nd blood transfusion. February the 5th I was able to come home from the

hospital. My daughter got to come home on February 10th. She weighted 4 lbs

and 5 oz. She is now 10 years old and almost as tall as me.

My days of pancreatitis wasn't over. I was in and out of the hospital for

years. I drove my husband crazy. But he loved me enough to stick with me.

(Even though people tried to get him to leave me.)

In October of 1995 I was sent to ton, SC at MUSC for test. There I had

the stint placed into the pancreatic duct. It just made things worse. I ended

up having a Peustow done and having another blood transfusion. I was in SC

for 1 month.

After the recovery I started seeing signs of improvement.

In April of 1999, I had to have a hysterectomy done. I had cancer cells, that

were burned and frozen several times, but kept coming back. That surgery has

really helped also with the pain from the pancreatitis.

I still hurt and have very few days where I don't have any pain. But God has

helped me to deal with it. And I know my limits. When the pain starts getting

bad I put myself on the liquid diet. I have great support from my family ( MY

DAD AND BOTH OF MY SISTERS ALSO HAVE PANCREATITIS) and friends.

Thanks for letting me share my story with you.

Tammy in TN

[Guest guest]

Well, hello to everyone. I am new to this group and felt the need to

reach out and tell my story. Although, before I begin, it seems as

though I do not have it as rough as many of you out there. However, I

have always been a very healthy person and this is all so new to me.

I have recently been diagnosed with what I believe to be Acute

Pancreatitis (rather than Chronic, but who knows...). The " episodes, "

as I like to call them, began during my 6th month of pregnancy. It

was 4am and I felt a very sharp pain in my upper abdomen, which felt

like an air pocket. After a reliable home remedy did not relieve my

pain (seltzer water to burp it out), and I was having trouble

breathing, my husband and I began to get dressed to go to the

hospital. Then after 30 minutes, as quickly as it came, the pain

vanished. I called my OB/GYN and she was convinced it was gas.

A few days later I had my monthly check-up and she again told me it

was gas and to get used to it, as pregnant women get a lot of it. She

also gave me the impression that if I couldn't tolerate this little

pain, how was I going to handle labor and delivery. I responded by

saying, " This was not gas! " but left believing that maybe it was...

Throughout my last trimester, I had 5 additional " episodes " - each

one getting a bit worse than the previous, and the last one in my 9th

month lasting 3 1/2 hours. Each time I was convinced that the baby

was simply sitting on a nerve or something, since the pain came and

went so fast and when the pain was there I did not feel my son

moving. So during each episode, I never called the doctor.

I gave birth on July 19th via C-Section and everything was fine. Then

3 weeks later, another episode - and a doozy. Now I was scared - I

was no longer pregnant, so what is going on?! It got so bad and we

all got so scared that my husband called 911. I was brought to the ER

and finally admitted with the diagnosis of Pancreatitis. The pain

went away after being given a wonderful drug called Dilauded (sp?),

and I felt fine for the 2 1/2 days they kept me there (missing my

newborn terribly!).

So the long and short of it is that I have gallstones and everyone

says to have the gallbladder removed is the only way to treat my

problem. Now we are going through a battery of tests and will soon be

scheduling laproscopic surgery to have it removed. I wish someone

would say " Well what do you know... you've passed all of your stones

so we don't have to go through with the surgery afterall! " But I

don't think that is in the cards.

Anyway, that is my story to date, which is changing everyday. Please

feel free to send along any thoughts or shared experiences. Also,

anyone think I have any recourse with my OB/GYN? I mean if she didn't

pass this off as gas and perhaps ordered a blood test or ultrasound,

this problem would have been detected. Even if I could be treated

when I was pregnant, perhaps I could have modified my diet and the

problem could have been stablized...

Hope to hear back from some of you... and good luck to everyone in

their treatments.

Debra

Kenilworth, NJ

[Guest guest]

Debra,

Congrats on the new baby... and welcome to the group! (I wish we could have met

under different circumstances... but I am glad we did meet!)

I had acute attacks while I was pregnant too... during my third and fifth

pregnancies. I never knew what my problem was though until (Officially) this

year. And my youngest child is 9 now.

I hope that you get all of the care you need and you find all of the support

here that you can stand! This is a great group of people and we have become

quite a family, if you ask me!

Take care and Many, Many {{{HUGZ}}}

in Michigan

---------------------------------

[Guest guest]

Debra,

Just wanted to say Welcome to the group, sorry you are

having problems with pancreatitis. Feel free to jump into

the posts. Talk to you later.

Kimber

--

Kimber

Vallejo, CA

hominid2@...

Southwest Representative

Pancreatitis Association, International

[Guest guest]

Hi, Debra.

I, too, had pancreatitis when I was pregnant the last time. I, however, was

diagnosed well before this pregnancy. I knew beforehand that things might be

rough, but I wanted my baby so much. I had just had a stent removed right

before becoming pregnant, so I did great for the first few months - only slight

discomfort. Then, at four, I started to have some small episodes. At six, it

hit full on - hospitalized five times before my son was born. The last episode,

my lipase was something totally absurd like 4500. My amalyse was off the wall,

as well. I was immediately hospitilized, and I spent four days on the maternity

floor on so many drugs that I can barely remember. They moved me up to the

anti-partum floor, where I laid in bed for four more days before the decided to

do amneo and induce me at 36 weeks. I had my son the next day, and felt like a

million bucks! Then, I developed a fever, found that I had pnuemonia - to make a

long story short, my son and I were released on the 14th day. Not pretty, but I

am so thankful for him.

I have had about five bad episodes since he was born seven months ago. The

others, I have tolerated at home with pain meds. I always refuse

hospitilization at the ER, as my GI is about an hour away. I refuse to let

anyone else touch me. I just know that, if my counts are bad enough, I'll just

have to make that drive.

I hope so much for you that your problem is gallbladder related. Mine was the

first to go in all of this mess, too. Is this your first baby? Try very hard

to enjoy him - even through the pain (I know it sounds hard - it's just a

mindset I have taken on lately).

I was lucky - my OB knew I had CP, and he just put me in anytime I had the pain.

I am so sorry for your bad experience. Welcome to the group. I am fairly new

here, and they have done so much for me.

All my prayers - and hoping for pain free days,

in KY

dvolz428 wrote:Well, hello to everyone. I am new to this group and felt the

need to

reach out and tell my story. Although, before I begin, it seems as

though I do not have it as rough as many of you out there. However, I

have always been a very healthy person and this is all so new to me.

I have recently been diagnosed with what I believe to be Acute

Pancreatitis (rather than Chronic, but who knows...). The " episodes, "

as I like to call them, began during my 6th month of pregnancy. It

was 4am and I felt a very sharp pain in my upper abdomen, which felt

like an air pocket. After a reliable home remedy did not relieve my

pain (seltzer water to burp it out), and I was having trouble

breathing, my husband and I began to get dressed to go to the

hospital. Then after 30 minutes, as quickly as it came, the pain

vanished. I called my OB/GYN and she was convinced it was gas.

A few days later I had my monthly check-up and she again told me it

was gas and to get used to it, as pregnant women get a lot of it. She

also gave me the impression that if I couldn't tolerate this little

pain, how was I going to handle labor and delivery. I responded by

saying, " This was not gas! " but left believing that maybe it was...

Throughout my last trimester, I had 5 additional " episodes " - each

one getting a bit worse than the previous, and the last one in my 9th

month lasting 3 1/2 hours. Each time I was convinced that the baby

was simply sitting on a nerve or something, since the pain came and

went so fast and when the pain was there I did not feel my son

moving. So during each episode, I never called the doctor.

I gave birth on July 19th via C-Section and everything was fine. Then

3 weeks later, another episode - and a doozy. Now I was scared - I

was no longer pregnant, so what is going on?! It got so bad and we

all got so scared that my husband called 911. I was brought to the ER

and finally admitted with the diagnosis of Pancreatitis. The pain

went away after being given a wonderful drug called Dilauded (sp?),

and I felt fine for the 2 1/2 days they kept me there (missing my

newborn terribly!).

So the long and short of it is that I have gallstones and everyone

says to have the gallbladder removed is the only way to treat my

problem. Now we are going through a battery of tests and will soon be

scheduling laproscopic surgery to have it removed. I wish someone

would say " Well what do you know... you've passed all of your stones

so we don't have to go through with the surgery afterall! " But I

don't think that is in the cards.

Anyway, that is my story to date, which is changing everyday. Please

feel free to send along any thoughts or shared experiences. Also,

anyone think I have any recourse with my OB/GYN? I mean if she didn't

pass this off as gas and perhaps ordered a blood test or ultrasound,

this problem would have been detected. Even if I could be treated

when I was pregnant, perhaps I could have modified my diet and the

problem could have been stablized...

Hope to hear back from some of you... and good luck to everyone in

their treatments.

Debra

Kenilworth, NJ

[Guest guest]

Hi,

Thanks for posting your story.

I'm wondering, like Terry, if you could use Tapazole. It's reported to have

less side effects and it doesn't cause P-ANCA antibody development. A low

dose could help you work your way toward remission. Happy New Year, Elaine

[Guest guest]

Hi,

Thanks for posting your story.

I'm wondering, like Terry, if you could use Tapazole. It's reported to have

less side effects and it doesn't cause P-ANCA antibody development. A low

dose could help you work your way toward remission. Happy New Year, Elaine

[Guest guest]

-Hardy

That 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 , 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.

>

[Guest guest]

-Hardy

That 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 , 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.

>

[Guest guest]

-Hardy

That 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 , 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.

>

[Guest guest]

Anyone heard from Hardy?

Arne

From:

[mailto: ] On Behalf

Of Hartmut Durchschlag

Sent: Monday, February 09, 2009 10:26 PM

…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

[Guest guest]

Hi all,everything went well.My fiancee and I were released already on Monday.Yes six days after the surgery, I couldn't believe it myself, when they told me I can go; I still thought they make a joke. My Blood work looks also pretty good, nothing to worry and no complications yet (Hope it stays so). It's like a small miracle. It went really well, much better than I expected. I can just say, the guys in Pittsburgh can be now pretty happy with their new doctor :-) Dr. Humar and the other surgeons and the U of MN were very real good. Unfortunately Dr.Humar left Mn on 13th to Pittburgh. We were one of his last patients. Nevertheless he is even coming back next Friday to see my fiancee and me in MN ( and I assume some other patients). I am really impressed by his dedication

to patients.I will keep you updated about any news. Just needed some rest and time off.HardyTo: Sent: Friday, February 20, 2009 9:03:30 PMSubject: RE: My Story

Anyone heard from Hardy? Arne

From:

[mailto: ] On Behalf

Of Hartmut Durchschlag

Sent: Monday, February 09, 2009 10:26 PM

…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

[Guest guest]

Ausgezeichnet!  Congratulations to you both!

Arne

UC 1977, PSC 2000

Alive and well in Minnesota

From:

[mailto: ] On Behalf

Of Hartmut Durchschlag

Hi all,

everything went well.

My fiancee and I were released already on Monday.Yes six days after the

surgery, …

..

[Guest guest]

Ausgezeichnet!  Congratulations to you both!

Arne

UC 1977, PSC 2000

Alive and well in Minnesota

From:

[mailto: ] On Behalf

Of Hartmut Durchschlag

Hi all,

everything went well.

My fiancee and I were released already on Monday.Yes six days after the

surgery, …

..

[Guest guest]

Ausgezeichnet!  Congratulations to you both!

Arne

UC 1977, PSC 2000

Alive and well in Minnesota

From:

[mailto: ] On Behalf

Of Hartmut Durchschlag

Hi all,

everything went well.

My fiancee and I were released already on Monday.Yes six days after the

surgery, …

..