Re: Re: New to Group/Transplant Eval Question

[Guest guest]

That's interesting Larry. When my son's test first came back he had an

ALK of 800, an AST of 107 an ALT of 135. While these are worse than

yours his bili was only .3 When I asked my son's physician about being

on a transplant list she told us he would have to be 10 times sicker

than he was. Since Bill started on the URSO his ALT and AST came back

to normal but his ALK is still close to 300. My son's ERCP also showed

narrowing of his bile ducts. I'm still trying to figure out his

symptoms from PSC vs. UC. Sometimes he can't eat and he does get

fatigued but he is also anemic. This is a rocky road and so far we are

hitting a lot of bumps. I'm waiting to hit that smooth stretch of road

and when we do I will encourage my son to go full speed ahead with

whatever it is he wants to do.

Take care

Lee

>

> Lee (and anyone else following this thread)-

> My GI doc said that he did not think that I was in immediate need for

> a new liver, but wanted me to go ahead and get in the system at UAB,

> so when the time does come, the process is much smoother. I think one

> reason he wants me to be evaluated is that my biopsy showed some

> cirrhosis. As far as symptoms, I have some jaundice in the eyes, and

> I do have the occasional fatigue and a bit of nausea, and maybe two or

> three times a year I have stomach pains (this is from thinking back

> over the past few years when I probably had PSC but just didn't know

> it). My ERCP basically showed narrowing of my bile ducts. As far as

> my most recent lab work:

> Total Bili 3.3

> Alk Phos 652

> AST 110

> ALT 91

>

> How does this compare to others in the group?

>

> Thanks for the support. It really makes me feel better that I've got

> another network of support, and that I can be there for others as well.

>

> larry

[Guest guest]

Lee,

Sounds like your son is going through the same things I am. My ALK is

349, his much higher, AST 105 and ALt 160. My bilirubin is 1.2 and my

iron level is at 34, which is low (anemic). My ERCP done in September 2004

showed narrowing of the bile duct and they performed a sphecterotomy to

create an opening for the bile to flow out. I am currently on 4 pills a

day of URSO, 20 mg prednisone for UC, 100 mg of 6-MP to taper off

prednisone which I have been on for 18 months.

The biggest difference is that I have UC, PSC and also Budd-Chiari

syndrome. I am currently taking Coumadin at 8 mg and my INR level is only

at 1.6. It needs to be at 2.5 - 3.0. Budd-Chiari is a independent Disease

within my liver. So, I have UC which is known to be associated with both

of the diseases I have. It is rare to have both at the same time. I am

fatigued during the day and find myself slowing down daily. My

hepatologist also told me that I am not ready to be listed even though the

PSC is progressing and the Budd-Chiari is creating blood clots in my

hepatic veins in my liver. This summer they put a Stent in place and I have

been doing better since this procedure. I believe they are waiting for me

to get control of the blood thinner medication. Other than this, I am in

good health, young (37) and positive outlook.

I hope the best for your son in getting to a smooth road. I am at a even

road, just not smooth with all the medication they have me taking. I would

like to keep up with his numbers as they are close to mine.

Take care and God Bless,

in St. Louis

PSC 5/03, UC 6/03, Budd-Chiari Syndrome 5/04

Lee Bria

<ldbria@... To:

et> cc:

Subject: Re: Re:

New to Group/Transplant Eval

10/01/2004 05:31 Question

PM

Please respond to

That's interesting Larry. When my son's test first came back he had an

ALK of 800, an AST of 107 an ALT of 135. While these are worse than

yours his bili was only .3 When I asked my son's physician about being

on a transplant list she told us he would have to be 10 times sicker

than he was. Since Bill started on the URSO his ALT and AST came back

to normal but his ALK is still close to 300. My son's ERCP also showed

narrowing of his bile ducts. I'm still trying to figure out his

symptoms from PSC vs. UC. Sometimes he can't eat and he does get

fatigued but he is also anemic. This is a rocky road and so far we are

hitting a lot of bumps. I'm waiting to hit that smooth stretch of road

and when we do I will encourage my son to go full speed ahead with

whatever it is he wants to do.

Take care

Lee

>

> Lee (and anyone else following this thread)-

> My GI doc said that he did not think that I was in immediate need for

> a new liver, but wanted me to go ahead and get in the system at UAB,

> so when the time does come, the process is much smoother. I think one

> reason he wants me to be evaluated is that my biopsy showed some

> cirrhosis. As far as symptoms, I have some jaundice in the eyes, and

> I do have the occasional fatigue and a bit of nausea, and maybe two or

> three times a year I have stomach pains (this is from thinking back

> over the past few years when I probably had PSC but just didn't know

> it). My ERCP basically showed narrowing of my bile ducts. As far as

> my most recent lab work:

> Total Bili 3.3

> Alk Phos 652

> AST 110

> ALT 91

>

> How does this compare to others in the group?

>

> Thanks for the support. It really makes me feel better that I've got

> another network of support, and that I can be there for others as well.

>

> larry

[Guest guest]

God bless you , I send my best wishes for an improvement in your

health.

My son's iron level is also 34 and he just started on 40mg of

prednisone on Friday.

He has not been able to get his UC under control enough to stop losing

weight. We are hoping that this works. His ALK is also in the 300's at

the moment. I see that you have exactly one more year of experience

with this health problem than we do. Would you mind telling me how old

you are and how long you had symptoms before you were diagnosed? My son

had problems indicative of the UC about a year before we got him to the

doctor.

Lee

> Lee,

>

> Sounds like your son is going through the same things I am. My ALK is

> 349, his much higher, AST 105 and ALt 160. My bilirubin is 1.2 and my

> iron level is at 34, which is low (anemic). My ERCP done in September

> 2004

> showed narrowing of the bile duct and they performed a sphecterotomy to

> create an opening for the bile to flow out. I am currently on 4 pills

> a

> day of URSO, 20 mg prednisone for UC, 100 mg of 6-MP to taper off

> prednisone which I have been on for 18 months.

>

> The biggest difference is that I have UC, PSC and also Budd-Chiari

> syndrome. I am currently taking Coumadin at 8 mg and my INR level is

> only

> at 1.6. It needs to be at 2.5 - 3.0. Budd-Chiari is a independent

> Disease

> within my liver. So, I have UC which is known to be associated with

> both

> of the diseases I have. It is rare to have both at the same time. I

> am

> fatigued during the day and find myself slowing down daily. My

> hepatologist also told me that I am not ready to be listed even though

> the

> PSC is progressing and the Budd-Chiari is creating blood clots in my

> hepatic veins in my liver. This summer they put a Stent in place and I

> have

> been doing better since this procedure. I believe they are waiting

> for me

> to get control of the blood thinner medication. Other than this, I am

> in

> good health, young (37) and positive outlook.

>

> I hope the best for your son in getting to a smooth road. I am at a

> even

> road, just not smooth with all the medication they have me taking. I

> would

> like to keep up with his numbers as they are close to mine.

>

> Take care and God Bless,

>

> in St. Louis

> PSC 5/03, UC 6/03, Budd-Chiari Syndrome 5/04

>

>

>

>

> Lee Bria

> <ldbria@... To:

>

> et> cc:

> Subject: Re:

> Re: New to Group/Transplant Eval

> 10/01/2004 05:31 Question

> PM

> Please respond to

>

>

>

>

>

>

>

> That's interesting Larry. When my son's test first came back he had an

> ALK of 800, an AST of 107 an ALT of 135. While these are worse than

> yours his bili was only .3 When I asked my son's physician about being

> on a transplant list she told us he would have to be 10 times sicker

> than he was. Since Bill started on the URSO his ALT and AST came back

> to normal but his ALK is still close to 300. My son's ERCP also showed

> narrowing of his bile ducts. I'm still trying to figure out his

> symptoms from PSC vs. UC. Sometimes he can't eat and he does get

> fatigued but he is also anemic. This is a rocky road and so far we are

> hitting a lot of bumps. I'm waiting to hit that smooth stretch of road

> and when we do I will encourage my son to go full speed ahead with

> whatever it is he wants to do.

> Take care

> Lee

>

>

>>

>> Lee (and anyone else following this thread)-

>> My GI doc said that he did not think that I was in immediate need for

>> a new liver, but wanted me to go ahead and get in the system at UAB,

>> so when the time does come, the process is much smoother. I think one

>> reason he wants me to be evaluated is that my biopsy showed some

>> cirrhosis. As far as symptoms, I have some jaundice in the eyes, and

>> I do have the occasional fatigue and a bit of nausea, and maybe two or

>> three times a year I have stomach pains (this is from thinking back

>> over the past few years when I probably had PSC but just didn't know

>> it). My ERCP basically showed narrowing of my bile ducts. As far as

>> my most recent lab work:

>> Total Bili 3.3

>> Alk Phos 652

>> AST 110

>> ALT 91

>>

>> How does this compare to others in the group?

>>

>> Thanks for the support. It really makes me feel better that I've got

>> another network of support, and that I can be there for others as

>> well.

>>

>> larry

>

>

>

[Guest guest]

Lee,

I gave blood in 95 and was given a letter to see my doctor regarding the

blood work they performed on it. I did but the doctor never said anything

was wrong. I had UC symptoms in 98 but never got diagnosed until 2003.

Looking back now, they were not as sever as they are now. When I have a

flare with my UC I lose 5 lbs in 2 days. I also get fevers of 103 - 105.

The only thing to get rid of the fevers is to increase the Prednisone. My

hepatologist does not like me to take any Tylenol, Advil, ibuprofen. I was

diagnosed at age 36 and am now 37 with a birthday in January. My last

bought in the hospital kept me there for 5 weeks. I began to retain water

in my abdomen, so much that I looked 3 - 4 months pregnant. I am around

135 lbs and my abdomen extended 4-5 inches. It was stretching so much it

was painful. I had a bilirubin of 23, all liver counts 4 times higher than

now and kidneys beginning to fail. That is when transplant team I was sent

to put in a TIPS - stent. This is when I was diagnosed with Budd-Chiari.

I have done quite a bit of research with the help of those on this email

group.

The prednisone hopefully will get your son's UC to be tolerable.I was asked

to take Milk Thistle, Vitamin E and Fish Oil supplements outside of

prescriptions. Has it been suggested your son take any supplements at this

time?

If you haven't done so yet, I suggest you keep a running log of the

medications your son is taking, the amount he is taking and everytime they

change it. When I go to any of my doctors, I print a copy of this which

lists all the medications so they know exactly what I am taking at any

given time. I have listed my pharmacist phone number, doctors office and

exchange numbers, how to contact my wife or parents and insurance

information. Everytime I go to the hospital, it makes life so much easier.

With taking 7 different medications and 5 vitamin supplements, its hard to

keep everything straight.

Hope the prednisone gets your son out of pain and to gain some weight. You

may want to ask if he can take a liquid supplement like Ensure. The name

brand is expensive but they do have it in generic brands as well.

Best of luck,

in St. Louis

PSC 5/03, UC 6/03, Budd-Chiari Syndrome 5/04

Lee Bria

<ldbria@... To:

et> cc:

Subject: Re: Re:

New to Group/Transplant Eval

10/03/2004 02:54 Question

PM

Please respond to

God bless you , I send my best wishes for an improvement in your

health.

My son's iron level is also 34 and he just started on 40mg of

prednisone on Friday.

He has not been able to get his UC under control enough to stop losing

weight. We are hoping that this works. His ALK is also in the 300's at

the moment. I see that you have exactly one more year of experience

with this health problem than we do. Would you mind telling me how old

you are and how long you had symptoms before you were diagnosed? My son

had problems indicative of the UC about a year before we got him to the

doctor.

Lee

> Lee,

>

> Sounds like your son is going through the same things I am. My ALK is

> 349, his much higher, AST 105 and ALt 160. My bilirubin is 1.2 and my

> iron level is at 34, which is low (anemic). My ERCP done in September

> 2004

> showed narrowing of the bile duct and they performed a sphecterotomy to

> create an opening for the bile to flow out. I am currently on 4 pills

> a

> day of URSO, 20 mg prednisone for UC, 100 mg of 6-MP to taper off

> prednisone which I have been on for 18 months.

>

> The biggest difference is that I have UC, PSC and also Budd-Chiari

> syndrome. I am currently taking Coumadin at 8 mg and my INR level is

> only

> at 1.6. It needs to be at 2.5 - 3.0. Budd-Chiari is a independent

> Disease

> within my liver. So, I have UC which is known to be associated with

> both

> of the diseases I have. It is rare to have both at the same time. I

> am

> fatigued during the day and find myself slowing down daily. My

> hepatologist also told me that I am not ready to be listed even though

> the

> PSC is progressing and the Budd-Chiari is creating blood clots in my

> hepatic veins in my liver. This summer they put a Stent in place and I

> have

> been doing better since this procedure. I believe they are waiting

> for me

> to get control of the blood thinner medication. Other than this, I am

> in

> good health, young (37) and positive outlook.

>

> I hope the best for your son in getting to a smooth road. I am at a

> even

> road, just not smooth with all the medication they have me taking. I

> would

> like to keep up with his numbers as they are close to mine.

>

> Take care and God Bless,

>

> in St. Louis

> PSC 5/03, UC 6/03, Budd-Chiari Syndrome 5/04

>

>

>

>

> Lee Bria

> <ldbria@... To:

>

> et> cc:

> Subject: Re:

> Re: New to Group/Transplant Eval

> 10/01/2004 05:31 Question

> PM

> Please respond to

>

>

>

>

>

>

>

> That's interesting Larry. When my son's test first came back he had an

> ALK of 800, an AST of 107 an ALT of 135. While these are worse than

> yours his bili was only .3 When I asked my son's physician about being

> on a transplant list she told us he would have to be 10 times sicker

> than he was. Since Bill started on the URSO his ALT and AST came back

> to normal but his ALK is still close to 300. My son's ERCP also showed

> narrowing of his bile ducts. I'm still trying to figure out his

> symptoms from PSC vs. UC. Sometimes he can't eat and he does get

> fatigued but he is also anemic. This is a rocky road and so far we are

> hitting a lot of bumps. I'm waiting to hit that smooth stretch of road

> and when we do I will encourage my son to go full speed ahead with

> whatever it is he wants to do.

> Take care

> Lee

>

>

>>

>> Lee (and anyone else following this thread)-

>> My GI doc said that he did not think that I was in immediate need for

>> a new liver, but wanted me to go ahead and get in the system at UAB,

>> so when the time does come, the process is much smoother. I think one

>> reason he wants me to be evaluated is that my biopsy showed some

>> cirrhosis. As far as symptoms, I have some jaundice in the eyes, and

>> I do have the occasional fatigue and a bit of nausea, and maybe two or

>> three times a year I have stomach pains (this is from thinking back

>> over the past few years when I probably had PSC but just didn't know

>> it). My ERCP basically showed narrowing of my bile ducts. As far as

>> my most recent lab work:

>> Total Bili 3.3

>> Alk Phos 652

>> AST 110

>> ALT 91

>>

>> How does this compare to others in the group?

>>

>> Thanks for the support. It really makes me feel better that I've got

>> another network of support, and that I can be there for others as

>> well.

>>

>> larry

>

>

>

[Guest guest]

, thanks for being generous with me. I like your idea to keep a

running tab of Bill's meds. on line. I will make one today.

I did indeed buy the fish oil and the vit. E and the primal defense

powder. My son is just too overwhelmed getting in the pills he needs

to, never mind the extra stuff.

He is only 21 and I think he is still having a problem accepting how

sick he is.

I bought the ensure also, he took one big sip and pronounced it

disgusting. His problem is that he is a 21 year old with a 10 year old

food attitude. Maybe he will improve his willingness to take things

even if he doesn't like them.

Reading what you have been through in just a year scares me to death

thinking that this might be what is ahead for us. Especially since Bill

is not doing well now. I feel so sorry for you and all you have had to

go through. I hope that you will now be on that smooth road that I'm

looking for.

Keep me posted on how you are feeling and I will keep you in my

thoughts.

Lee

> Lee,

>

> I gave blood in 95 and was given a letter to see my doctor regarding

> the

> blood work they performed on it. I did but the doctor never said

> anything

> was wrong. I had UC symptoms in 98 but never got diagnosed until 2003.

> Looking back now, they were not as sever as they are now. When I have

> a

> flare with my UC I lose 5 lbs in 2 days. I also get fevers of 103 -

> 105.

> The only thing to get rid of the fevers is to increase the Prednisone.

> My

> hepatologist does not like me to take any Tylenol, Advil, ibuprofen.

> I was

> diagnosed at age 36 and am now 37 with a birthday in January. My last

> bought in the hospital kept me there for 5 weeks. I began to retain

> water

> in my abdomen, so much that I looked 3 - 4 months pregnant. I am

> around

> 135 lbs and my abdomen extended 4-5 inches. It was stretching so much

> it

> was painful. I had a bilirubin of 23, all liver counts 4 times higher

> than

> now and kidneys beginning to fail. That is when transplant team I was

> sent

> to put in a TIPS - stent. This is when I was diagnosed with

> Budd-Chiari.

> I have done quite a bit of research with the help of those on this

> email

> group.

>

> The prednisone hopefully will get your son's UC to be tolerable.I was

> asked

> to take Milk Thistle, Vitamin E and Fish Oil supplements outside of

> prescriptions. Has it been suggested your son take any supplements at

> this

> time?

>

> If you haven't done so yet, I suggest you keep a running log of the

> medications your son is taking, the amount he is taking and everytime

> they

> change it. When I go to any of my doctors, I print a copy of this

> which

> lists all the medications so they know exactly what I am taking at any

> given time. I have listed my pharmacist phone number, doctors office

> and

> exchange numbers, how to contact my wife or parents and insurance

> information. Everytime I go to the hospital, it makes life so much

> easier.

> With taking 7 different medications and 5 vitamin supplements, its

> hard to

> keep everything straight.

>

> Hope the prednisone gets your son out of pain and to gain some weight.

> You

> may want to ask if he can take a liquid supplement like Ensure. The

> name

> brand is expensive but they do have it in generic brands as well.

>

> Best of luck,

>

> in St. Louis

> PSC 5/03, UC 6/03, Budd-Chiari Syndrome 5/04

>

>

[Guest guest]

Lee,

Try Carnation Instant Breakfast - comes in a powder that you mix with milk. Much less expensive than Ensure, and just as effective in providing some extra calories.Steve Rahn

PSC '80 --> L Tx 9/6 & 9/8 '85 (Wash U. - St. Louis)

Recurrent PSC '02 -->(re)Born on the 4th of July, 2003(Re-L Tx at U of Iowa)

"Solve the problem, not the solution" (Dean Kamen)

-- ___________________________________________________________Sign-up for Ads Free at Mail.com

http://www.mail.com/?sr=signup

[Guest guest]

thanks for a tip that I didn't think of. I will check into it.

Lee

> Lee,

>

> Try Carnation Instant Breakfast - comes in a powder that you mix with

> milk. Much less expensive than Ensure, and just as effective in

> providing some extra calories.

>

> Steve Rahn

> PSC '80 --> L Tx 9/6 & 9/8 '85 (Wash U. - St. Louis)

> Recurrent PSC '02 -->(re)Born on the 4th of July, 2003(Re-L Tx at U of

> Iowa)

> " Solve the problem, not the solution " (Dean Kamen)

>

> --