Re: Q's for Docs from newly dx persons

[Guest guest]

I think the list is great. The only con is that it is super overwhelming for new patients. That is not a negative comment just a fear. Good luck,ShaulPSC UCSent via BlackBerry by AT&TFrom: Ross Heil Date: Tue, 6 Jan 2009 17:47:02 -0800 (PST)To: < >Subject: Q's for Docs from newly dx persons Hello all, I hope everyone enjoyed the holiday season. I'm trying to put together a list of questions for newly diagnosed people with PSC to ask their physicians so that they get the best possible care. Please submit questions that you did ask or wish you had asked early on in your path with PSC. Any question is reasonable and all help is appreciated. These are what I have come up with so far: Should Ursodiol play a role in my management of PSC? If yes, what dosage?How frequently should I be checked for fat soluble vitamins (Vit A, E, K, D) levels?Should I take Fat Soluble vitamin supplements? If yes, what dosages?Should I consume alcohol containing products?If I experience itching from my liver disease, also known as pruritis, what can I do to gain relief? Is grapefruit juice ok to try?Is it safe to smoke Marijuana with known liver disease such as PSC ?Upon average, when does bile duct cancer (cholangiocarcinoma, aka the Klatskin tumor) arise from the time diagnosed with PSC?If bile duct cancer is suspected and brush scrapings are done, will you send the sample to Rochester Mayo for FISH staining?Are fish oils an acceptable supplement? If yes, what dosage would you recommend?How often do you recommend an ERCP or MRCP?How often should I have an abdominal ultrasound?How often should a CA 19-9 level be drawn?How often should I follow up for an office visit?How many cases of PSC have you managed in the past and currently?What do you think about getting a second opinion? Thank you for your time. Sincerely, Ross Heil PSC & UC 2004

[Guest guest]

I think the list is great. The only con is that it is super overwhelming for new patients. That is not a negative comment just a fear. Good luck,ShaulPSC UCSent via BlackBerry by AT&TFrom: Ross Heil Date: Tue, 6 Jan 2009 17:47:02 -0800 (PST)To: < >Subject: Q's for Docs from newly dx persons Hello all, I hope everyone enjoyed the holiday season. I'm trying to put together a list of questions for newly diagnosed people with PSC to ask their physicians so that they get the best possible care. Please submit questions that you did ask or wish you had asked early on in your path with PSC. Any question is reasonable and all help is appreciated. These are what I have come up with so far: Should Ursodiol play a role in my management of PSC? If yes, what dosage?How frequently should I be checked for fat soluble vitamins (Vit A, E, K, D) levels?Should I take Fat Soluble vitamin supplements? If yes, what dosages?Should I consume alcohol containing products?If I experience itching from my liver disease, also known as pruritis, what can I do to gain relief? Is grapefruit juice ok to try?Is it safe to smoke Marijuana with known liver disease such as PSC ?Upon average, when does bile duct cancer (cholangiocarcinoma, aka the Klatskin tumor) arise from the time diagnosed with PSC?If bile duct cancer is suspected and brush scrapings are done, will you send the sample to Rochester Mayo for FISH staining?Are fish oils an acceptable supplement? If yes, what dosage would you recommend?How often do you recommend an ERCP or MRCP?How often should I have an abdominal ultrasound?How often should a CA 19-9 level be drawn?How often should I follow up for an office visit?How many cases of PSC have you managed in the past and currently?What do you think about getting a second opinion? Thank you for your time. Sincerely, Ross Heil PSC & UC 2004

[Guest guest]

-At what point would you want me to call regarding symptoms, and for

which symptoms would you want me to go straight to an ER?

-Can I have my routine labs drawn before my appointments so that we

may discuss the results in person?

>

> Hello all,

>  

> I hope everyone enjoyed the holiday season.  I'm trying to put

together a list of questions for newly diagnosed people with PSC to

ask their physicians so that they get the best possible care. Please

submit questions that you did ask or wish you had asked early on in

your path with PSC.  Any question is reasonable and all help is

appreciated.

>  

> These are what I have come up with so far:

>  

>

> Should Ursodiol play a role in my management of PSC?  If yes, what

dosage?

> How frequently should I be checked for fat soluble vitamins (Vit A,

E, K, D) levels?

> Should I take Fat Soluble vitamin supplements?  If yes, what dosages?

> Should I consume alcohol containing products?

> If I experience itching from my liver disease, also known as

pruritis, what can I do to gain relief?  Is grapefruit juice ok to try?

> Is it safe to smoke Marijuana with known liver disease such as PSC ?

> Upon average, when does bile duct cancer (cholangiocarcinoma, aka

the Klatskin tumor) arise from the time diagnosed with PSC?

> If bile duct cancer is suspected and brush scrapings are done, will

you send the sample to Rochester Mayo for FISH staining?

> Are fish oils an acceptable supplement?  If yes, what dosage would

you recommend?

> How often do you recommend an ERCP or MRCP?

> How often should I have an abdominal ultrasound?

> How often should a CA 19-9 level be drawn?

> How often should I follow up for an office visit?

> How many cases of PSC have you managed in the past and currently?

> What do you think about getting a second opinion?

>  

> Thank you for your time.

>  

> Sincerely,

>  

> Ross Heil

> PSC & UC 2004

>

>  

>

[Guest guest]

Haven’t given any

thought on what to ask, but I can tell you

what our doctor answered to a couple of questions.

Should I consume

alcohol containing products?

An occasional weak drink in early stages probably wouldn’t

be a problem, but be aware - too much or too often could possibly harm your

liver. I can’t

imagine a cold without Nyquil, but I’d be really careful not to take

too much. In

later stages…. any alcohol

would likely cause harm.

Is grapefruit

juice ok to try?

Grapefruit or juice can cause problems with any medicine

you take.

Is it safe to

smoke Marijuana with known liver disease such as PSC ?

Absolutely NOT! Transplant

centers can and will turn you down for transplant if you smoke marijuana. Remember reading about that man in California who smoked marijuana and was turned

down by his center for smoking it? He died.

Barb in Texas

,_._,___

[Guest guest]

Haven’t given any

thought on what to ask, but I can tell you

what our doctor answered to a couple of questions.

Should I consume

alcohol containing products?

An occasional weak drink in early stages probably wouldn’t

be a problem, but be aware - too much or too often could possibly harm your

liver. I can’t

imagine a cold without Nyquil, but I’d be really careful not to take

too much. In

later stages…. any alcohol

would likely cause harm.

Is grapefruit

juice ok to try?

Grapefruit or juice can cause problems with any medicine

you take.

Is it safe to

smoke Marijuana with known liver disease such as PSC ?

Absolutely NOT! Transplant

centers can and will turn you down for transplant if you smoke marijuana. Remember reading about that man in California who smoked marijuana and was turned

down by his center for smoking it? He died.

Barb in Texas

,_._,___

[Guest guest]

Here are some questions That I asked my Hepatologist. Not sure if

they are helpful to others though

When I get the pain in my side what should I do?

What do you anticipate the timeframe/course of my PSC to be?

Can I have my blood drawn BEFORE I see you next time, so we

can discuss the results?

What medications should I be on?

Are any of my current medications problematic?

What is my MELD score?

How often should I see you?

Can I have a copy of my blood and diagnostic test results?

Dawn

>

> Hello all,

>  

> I hope everyone enjoyed the holiday season.  I'm trying to put

together a list of questions for newly diagnosed people with PSC to

ask their physicians so that they get the best possible care. Please

submit questions that you did ask or wish you had asked early on in

your path with PSC.  Any question is reasonable and all help is

appreciated.

>  

> These are what I have come up with so far:

>  

>

> Should Ursodiol play a role in my management of PSC?  If yes, what

dosage?

> How frequently should I be checked for fat soluble vitamins (Vit A,

E, K, D) levels?

> Should I take Fat Soluble vitamin supplements?  If yes, what

dosages?

> Should I consume alcohol containing products?

> If I experience itching from my liver disease, also known as

pruritis, what can I do to gain relief?  Is grapefruit juice ok to

try?

> Is it safe to smoke Marijuana with known liver disease such as PSC ?

> Upon average, when does bile duct cancer (cholangiocarcinoma, aka

the Klatskin tumor) arise from the time diagnosed with PSC?

> If bile duct cancer is suspected and brush scrapings are done, will

you send the sample to Rochester Mayo for FISH staining?

> Are fish oils an acceptable supplement?  If yes, what dosage would

you recommend?

> How often do you recommend an ERCP or MRCP?

> How often should I have an abdominal ultrasound?

> How often should a CA 19-9 level be drawn?

> How often should I follow up for an office visit?

> How many cases of PSC have you managed in the past and currently?

> What do you think about getting a second opinion?

>  

> Thank you for your time.

>  

> Sincerely,

>  

> Ross Heil

> PSC & UC 2004

>

>  

>

[Guest guest]

Here are some questions That I asked my Hepatologist. Not sure if

they are helpful to others though

When I get the pain in my side what should I do?

What do you anticipate the timeframe/course of my PSC to be?

Can I have my blood drawn BEFORE I see you next time, so we

can discuss the results?

What medications should I be on?

Are any of my current medications problematic?

What is my MELD score?

How often should I see you?

Can I have a copy of my blood and diagnostic test results?

Dawn

>

> Hello all,

>  

> I hope everyone enjoyed the holiday season.  I'm trying to put

together a list of questions for newly diagnosed people with PSC to

ask their physicians so that they get the best possible care. Please

submit questions that you did ask or wish you had asked early on in

your path with PSC.  Any question is reasonable and all help is

appreciated.

>  

> These are what I have come up with so far:

>  

>

> Should Ursodiol play a role in my management of PSC?  If yes, what

dosage?

> How frequently should I be checked for fat soluble vitamins (Vit A,

E, K, D) levels?

> Should I take Fat Soluble vitamin supplements?  If yes, what

dosages?

> Should I consume alcohol containing products?

> If I experience itching from my liver disease, also known as

pruritis, what can I do to gain relief?  Is grapefruit juice ok to

try?

> Is it safe to smoke Marijuana with known liver disease such as PSC ?

> Upon average, when does bile duct cancer (cholangiocarcinoma, aka

the Klatskin tumor) arise from the time diagnosed with PSC?

> If bile duct cancer is suspected and brush scrapings are done, will

you send the sample to Rochester Mayo for FISH staining?

> Are fish oils an acceptable supplement?  If yes, what dosage would

you recommend?

> How often do you recommend an ERCP or MRCP?

> How often should I have an abdominal ultrasound?

> How often should a CA 19-9 level be drawn?

> How often should I follow up for an office visit?

> How many cases of PSC have you managed in the past and currently?

> What do you think about getting a second opinion?

>  

> Thank you for your time.

>  

> Sincerely,

>  

> Ross Heil

> PSC & UC 2004

>

>  

>

[Guest guest]

These two are excellent. Everyone should

get a copy of their results for all tests. When the time comes for a

transplant or change of doctors, these will be extremely valuable. They will

provide dates and trends. Unfortunately I was not smart enough to figure this

out until after my transplant. Also, the MELD score is very important. It

gives you a gauge that is valuable for your own peace of mind.

Joe

From:

[mailto: ] On

Behalf Of mdwblaze

Sent: Tuesday, January 06, 2009

8:44 PM

To:

Subject: Re: Q's for

Docs from newly dx persons

What is my MELD score?

Can I have a copy of my blood and diagnostic test results?

[Guest guest]

These two are excellent. Everyone should

get a copy of their results for all tests. When the time comes for a

transplant or change of doctors, these will be extremely valuable. They will

provide dates and trends. Unfortunately I was not smart enough to figure this

out until after my transplant. Also, the MELD score is very important. It

gives you a gauge that is valuable for your own peace of mind.

Joe

From:

[mailto: ] On

Behalf Of mdwblaze

Sent: Tuesday, January 06, 2009

8:44 PM

To:

Subject: Re: Q's for

Docs from newly dx persons

What is my MELD score?

Can I have a copy of my blood and diagnostic test results?

[Guest guest]

Ross,

I would expand your question and give a bit of a speal about why your asking the question, before asking the question. For instant;

- question 2. The Liver effects the bodies absorption of fat soluble vitamins (Vit A, E, K, D).

How frequently should I be checked their levels?

Ian

Hello all,

I hope everyone enjoyed the holiday season. I'm trying to put together a list of questions for newly diagnosed people with PSC to ask their physicians so that they get the best possible care. Please submit questions that you did ask or wish you had asked early on in your path with PSC. Any question is reasonable and all help is appreciated.

These are what I have come up with so far:

Should Ursodiol play a role in my management of PSC? If yes, what dosage?

How frequently should I be checked for fat soluble vitamins (Vit A, E, K, D) levels?

Should I take Fat Soluble vitamin supplements? If yes, what dosages?

Should I consume alcohol containing products?

If I experience itching from my liver disease, also known as pruritis, what can I do to gain relief? Is grapefruit juice ok to try?

Is it safe to smoke Marijuana with known liver disease such as PSC ?

Upon average, when does bile duct cancer (cholangiocarcinoma, aka the Klatskin tumor) arise from the time diagnosed with PSC?

If bile duct cancer is suspected and brush scrapings are done, will you send the sample to Rochester Mayo for FISH staining?

Are fish oils an acceptable supplement? If yes, what dosage would you recommend?

How often do you recommend an ERCP or MRCP?

How often should I have an abdominal ultrasound?

How often should a CA 19-9 level be drawn?

How often should I follow up for an office visit?

How many cases of PSC have you managed in the past and currently?

What do you think about getting a second opinion?

Thank you for your time.

Sincerely,

Ross Heil

PSC & UC 2004

-- Ian Cribb P.Eng.

[Guest guest]

Ross - great list and I know others have sent in additional questions.

I agree with the questions about how best to contact the doctor for questions (telephone, email, fax, talk to nurse, etc)?

What is the easiest way to get a copy of my lab work, test results?

How often should a bone density test be done?

Frequency of screening colonoscopy (with and without UC/Crohn's)

What symptoms does the doctor want to know about quickly?

Necessary vaccinations (Hepatitis A and B, Pneumonia, Influenza, others?)

If planning travel, especially outside of the country, ask about special vaccines or medications to take to have "if needed"

If you are not available, who is on-call for you?

Recommendations on over-the counter medications and supplements

Last thought for as you finalize the question list - maybe the questions are grouped into two or three categories - like all screening tests together, all tests questions together... or the first important questions for someone newly diagnosed and then questions that are on-going and related to all PSC'ers... just to make the list feel more concise and easy to handle?

Thanks for taking on this task! Hope all is going well for you.

Joanne H

(, Ca, mom of , 18, UC/PSC 2-06)

-----Original Message-----From: [mailto: ]On Behalf Of Ross HeilSent: Tuesday, January 06, 2009 5:47 PMTo: Subject: Q's for Docs from newly dx persons

Hello all,

I hope everyone enjoyed the holiday season. I'm trying to put together a list of questions for newly diagnosed people with PSC to ask their physicians so that they get the best possible care. Please submit questions that you did ask or wish you had asked early on in your path with PSC. Any question is reasonable and all help is appreciated.

These are what I have come up with so far:

Should Ursodiol play a role in my management of PSC? If yes, what dosage? How frequently should I be checked for fat soluble vitamins (Vit A, E, K, D) levels? Should I take Fat Soluble vitamin supplements? If yes, what dosages? Should I consume alcohol containing products? If I experience itching from my liver disease, also known as pruritis, what can I do to gain relief? Is grapefruit juice ok to try? Is it safe to smoke Marijuana with known liver disease such as PSC ? Upon average, when does bile duct cancer (cholangiocarcinoma, aka the Klatskin tumor) arise from the time diagnosed with PSC? If bile duct cancer is suspected and brush scrapings are done, will you send the sample to Rochester Mayo for FISH staining? Are fish oils an acceptable supplement? If yes, what dosage would you recommend? How often do you recommend an ERCP or MRCP? How often should I have an abdominal ultrasound? How often should a CA 19-9 level be drawn? How often should I follow up for an office visit? How many cases of PSC have you managed in the past and currently? What do you think about getting a second opinion?

Thank you for your time.

Sincerely,

Ross Heil

PSC & UC 2004

[Guest guest]

Ross - great list and I know others have sent in additional questions.

I agree with the questions about how best to contact the doctor for questions (telephone, email, fax, talk to nurse, etc)?

What is the easiest way to get a copy of my lab work, test results?

How often should a bone density test be done?

Frequency of screening colonoscopy (with and without UC/Crohn's)

What symptoms does the doctor want to know about quickly?

Necessary vaccinations (Hepatitis A and B, Pneumonia, Influenza, others?)

If planning travel, especially outside of the country, ask about special vaccines or medications to take to have "if needed"

If you are not available, who is on-call for you?

Recommendations on over-the counter medications and supplements

Last thought for as you finalize the question list - maybe the questions are grouped into two or three categories - like all screening tests together, all tests questions together... or the first important questions for someone newly diagnosed and then questions that are on-going and related to all PSC'ers... just to make the list feel more concise and easy to handle?

Thanks for taking on this task! Hope all is going well for you.

Joanne H

(, Ca, mom of , 18, UC/PSC 2-06)

-----Original Message-----From: [mailto: ]On Behalf Of Ross HeilSent: Tuesday, January 06, 2009 5:47 PMTo: Subject: Q's for Docs from newly dx persons

Hello all,

I hope everyone enjoyed the holiday season. I'm trying to put together a list of questions for newly diagnosed people with PSC to ask their physicians so that they get the best possible care. Please submit questions that you did ask or wish you had asked early on in your path with PSC. Any question is reasonable and all help is appreciated.

These are what I have come up with so far:

Should Ursodiol play a role in my management of PSC? If yes, what dosage? How frequently should I be checked for fat soluble vitamins (Vit A, E, K, D) levels? Should I take Fat Soluble vitamin supplements? If yes, what dosages? Should I consume alcohol containing products? If I experience itching from my liver disease, also known as pruritis, what can I do to gain relief? Is grapefruit juice ok to try? Is it safe to smoke Marijuana with known liver disease such as PSC ? Upon average, when does bile duct cancer (cholangiocarcinoma, aka the Klatskin tumor) arise from the time diagnosed with PSC? If bile duct cancer is suspected and brush scrapings are done, will you send the sample to Rochester Mayo for FISH staining? Are fish oils an acceptable supplement? If yes, what dosage would you recommend? How often do you recommend an ERCP or MRCP? How often should I have an abdominal ultrasound? How often should a CA 19-9 level be drawn? How often should I follow up for an office visit? How many cases of PSC have you managed in the past and currently? What do you think about getting a second opinion?

Thank you for your time.

Sincerely,

Ross Heil

PSC & UC 2004

[Guest guest]

Ross,

I would also, because PSC patents normally have lower body temperatures,request a base line body temperature reading and ask at how high a temperature should you get to the hospital?

Ian

Ross,

I would expand your question and give a bit of a speal about why your asking the question, before asking the question. For instant;

- question 2. The Liver effects the bodies absorption of fat soluble vitamins (Vit A, E, K, D).

How frequently should I be checked their levels?

Ian

Hello all,

I hope everyone enjoyed the holiday season. I'm trying to put together a list of questions for newly diagnosed people with PSC to ask their physicians so that they get the best possible care. Please submit questions that you did ask or wish you had asked early on in your path with PSC. Any question is reasonable and all help is appreciated.

These are what I have come up with so far:

Should Ursodiol play a role in my management of PSC? If yes, what dosage?

How frequently should I be checked for fat soluble vitamins (Vit A, E, K, D) levels?

Should I take Fat Soluble vitamin supplements? If yes, what dosages?

Should I consume alcohol containing products?

If I experience itching from my liver disease, also known as pruritis, what can I do to gain relief? Is grapefruit juice ok to try?

Is it safe to smoke Marijuana with known liver disease such as PSC ?

Upon average, when does bile duct cancer (cholangiocarcinoma, aka the Klatskin tumor) arise from the time diagnosed with PSC?

If bile duct cancer is suspected and brush scrapings are done, will you send the sample to Rochester Mayo for FISH staining?

Are fish oils an acceptable supplement? If yes, what dosage would you recommend?

How often do you recommend an ERCP or MRCP?

How often should I have an abdominal ultrasound?

How often should a CA 19-9 level be drawn?

How often should I follow up for an office visit?

How many cases of PSC have you managed in the past and currently?

What do you think about getting a second opinion?

Thank you for your time.

Sincerely,

Ross Heil

PSC & UC 2004

--

Ian Cribb P.Eng. -- Ian Cribb P.Eng.

[Guest guest]

Ross,

I would also, because PSC patents normally have lower body temperatures,request a base line body temperature reading and ask at how high a temperature should you get to the hospital?

Ian

Ross,

I would expand your question and give a bit of a speal about why your asking the question, before asking the question. For instant;

- question 2. The Liver effects the bodies absorption of fat soluble vitamins (Vit A, E, K, D).

How frequently should I be checked their levels?

Ian

Hello all,

I hope everyone enjoyed the holiday season. I'm trying to put together a list of questions for newly diagnosed people with PSC to ask their physicians so that they get the best possible care. Please submit questions that you did ask or wish you had asked early on in your path with PSC. Any question is reasonable and all help is appreciated.

These are what I have come up with so far:

Should Ursodiol play a role in my management of PSC? If yes, what dosage?

How frequently should I be checked for fat soluble vitamins (Vit A, E, K, D) levels?

Should I take Fat Soluble vitamin supplements? If yes, what dosages?

Should I consume alcohol containing products?

If I experience itching from my liver disease, also known as pruritis, what can I do to gain relief? Is grapefruit juice ok to try?

Is it safe to smoke Marijuana with known liver disease such as PSC ?

Upon average, when does bile duct cancer (cholangiocarcinoma, aka the Klatskin tumor) arise from the time diagnosed with PSC?

If bile duct cancer is suspected and brush scrapings are done, will you send the sample to Rochester Mayo for FISH staining?

Are fish oils an acceptable supplement? If yes, what dosage would you recommend?

How often do you recommend an ERCP or MRCP?

How often should I have an abdominal ultrasound?

How often should a CA 19-9 level be drawn?

How often should I follow up for an office visit?

How many cases of PSC have you managed in the past and currently?

What do you think about getting a second opinion?

Thank you for your time.

Sincerely,

Ross Heil

PSC & UC 2004

--

Ian Cribb P.Eng. -- Ian Cribb P.Eng.

[Guest guest]

Ross,Thank you so much for getting this list together, when it is completed I hope it is something we can find a place for on our Partners web site for easy access. It will be very helpful to those newto PSC and to everyone else as they make different Dr. visits.I like the comments Joanne has made below. Thanks so much for doing this.LeeRoss - great list and I know others have sent in additional questions.I agree with the questions about how best to contact the doctor for questions (telephone, email, fax, talk to nurse, etc)?What is the easiest way to get a copy of my lab work, test results?How often should a bone density test be done?Frequency of screening colonoscopy (with and without UC/Crohn's)What symptoms does the doctor want to know about quickly?Necessary vaccinations (Hepatitis A and B, Pneumonia, Influenza, others?)If planning travel, especially outside of the country, ask about special vaccines or medications to take to have "if needed"If you are not available, who is on-call for you? Recommendations on over-the counter medications and supplements Last thought for as you finalize the question list - maybe the questions are grouped into two or three categories - like all screening tests together, all tests questions together... or the first important questions for someone newly diagnosed and then questions that are on-going and related to all PSC'ers... just to make the list feel more concise and easy to handle? Thanks for taking on this task! Hope all is going well for you. Joanne H(, Ca, mom of , 18, UC/PSC 2-06)

[Guest guest]

One more question,Did someone already mention asking whether your Dr. prefers you take tylenol or another pain reliever?Ross - great list and I know others have sent in additional questions.I agree with the questions about how best to contact the doctor for questions (telephone, email, fax, talk to nurse, etc)?What is the easiest way to get a copy of my lab work, test results?How often should a bone density test be done?Frequency of screening colonoscopy (with and without UC/Crohn's)What symptoms does the doctor want to know about quickly?Necessary vaccinations (Hepatitis A and B, Pneumonia, Influenza, others?)If planning travel, especially outside of the country, ask about special vaccines or medications to take to have "if needed"If you are not available, who is on-call for you? Recommendations on over-the counter medications and supplements

[Guest guest]

One more question,Did someone already mention asking whether your Dr. prefers you take tylenol or another pain reliever?Ross - great list and I know others have sent in additional questions.I agree with the questions about how best to contact the doctor for questions (telephone, email, fax, talk to nurse, etc)?What is the easiest way to get a copy of my lab work, test results?How often should a bone density test be done?Frequency of screening colonoscopy (with and without UC/Crohn's)What symptoms does the doctor want to know about quickly?Necessary vaccinations (Hepatitis A and B, Pneumonia, Influenza, others?)If planning travel, especially outside of the country, ask about special vaccines or medications to take to have "if needed"If you are not available, who is on-call for you? Recommendations on over-the counter medications and supplements

[Guest guest]

That is a good one! I asked, because my doc told me to not take NSAIDs

because of duodenitis. He said I can take Tylenol because I do not

have cirrhosis, so if I progress to that point I guess I will be stuck

with NSAIDs very minimally.

ee

>

> >

[Guest guest]

That is a good one! I asked, because my doc told me to not take NSAIDs

because of duodenitis. He said I can take Tylenol because I do not

have cirrhosis, so if I progress to that point I guess I will be stuck

with NSAIDs very minimally.

ee

>

> >

[Guest guest]

Ross,

Great List. I wish I had had a list like this when i was DX. An

idea for a secondary List would be one for when you begin the TX

evaluation as I am. I will use this list during the process.

Thanks again,

Jeff

>

> Hello all,

>  

> I hope everyone enjoyed the holiday season.  I'm trying to put

together a list of questions for newly diagnosed people with PSC to

ask their physicians so that they get the best possible care. Please

submit questions that you did ask or wish you had asked early on in

your path with PSC.  Any question is reasonable and all help is

appreciated.

>  

> These are what I have come up with so far:

>  

>

> Should Ursodiol play a role in my management of PSC?  If yes, what

dosage?

> How frequently should I be checked for fat soluble vitamins (Vit A,

E, K, D) levels?

> Should I take Fat Soluble vitamin supplements?  If yes, what

dosages?

> Should I consume alcohol containing products?

> If I experience itching from my liver disease, also known as

pruritis, what can I do to gain relief?  Is grapefruit juice ok to

try?

> Is it safe to smoke Marijuana with known liver disease such as PSC ?

> Upon average, when does bile duct cancer (cholangiocarcinoma, aka

the Klatskin tumor) arise from the time diagnosed with PSC?

> If bile duct cancer is suspected and brush scrapings are done, will

you send the sample to Rochester Mayo for FISH staining?

> Are fish oils an acceptable supplement?  If yes, what dosage would

you recommend?

> How often do you recommend an ERCP or MRCP?

> How often should I have an abdominal ultrasound?

> How often should a CA 19-9 level be drawn?

> How often should I follow up for an office visit?

> How many cases of PSC have you managed in the past and currently?

> What do you think about getting a second opinion?

>  

> Thank you for your time.

>  

> Sincerely,

>  

> Ross Heil

> PSC & UC 2004

>

>  

>

[Guest guest]

Ross,

Great List. I wish I had had a list like this when i was DX. An

idea for a secondary List would be one for when you begin the TX

evaluation as I am. I will use this list during the process.

Thanks again,

Jeff

>

> Hello all,

>  

> I hope everyone enjoyed the holiday season.  I'm trying to put

together a list of questions for newly diagnosed people with PSC to

ask their physicians so that they get the best possible care. Please

submit questions that you did ask or wish you had asked early on in

your path with PSC.  Any question is reasonable and all help is

appreciated.

>  

> These are what I have come up with so far:

>  

>

> Should Ursodiol play a role in my management of PSC?  If yes, what

dosage?

> How frequently should I be checked for fat soluble vitamins (Vit A,

E, K, D) levels?

> Should I take Fat Soluble vitamin supplements?  If yes, what

dosages?

> Should I consume alcohol containing products?

> If I experience itching from my liver disease, also known as

pruritis, what can I do to gain relief?  Is grapefruit juice ok to

try?

> Is it safe to smoke Marijuana with known liver disease such as PSC ?

> Upon average, when does bile duct cancer (cholangiocarcinoma, aka

the Klatskin tumor) arise from the time diagnosed with PSC?

> If bile duct cancer is suspected and brush scrapings are done, will

you send the sample to Rochester Mayo for FISH staining?

> Are fish oils an acceptable supplement?  If yes, what dosage would

you recommend?

> How often do you recommend an ERCP or MRCP?

> How often should I have an abdominal ultrasound?

> How often should a CA 19-9 level be drawn?

> How often should I follow up for an office visit?

> How many cases of PSC have you managed in the past and currently?

> What do you think about getting a second opinion?

>  

> Thank you for your time.

>  

> Sincerely,

>  

> Ross Heil

> PSC & UC 2004

>

>  

>

[Guest guest]

If you have your test results (including INR) you can figure out your MELD easily...

http://www.mayoclinic.org/meld/mayomodel6.html

-----Original Message-----

What is my MELD score?Can I have a copy of my blood and diagnostic test results?

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[Guest guest]

If you have your test results (including INR) you can figure out your MELD easily...

http://www.mayoclinic.org/meld/mayomodel6.html

-----Original Message-----

What is my MELD score?Can I have a copy of my blood and diagnostic test results?

Recent Activity

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[Guest guest]

Hi I am putting my two cents in regarding marijauna if you seek a

transplant you should not touch this drug. there was a man dying of

liver faliure and needed a transplant to save his life. he was turned

down at Swedish in Seattle and University of WA in Seattle even though

he was perscribed medical marijuana. He died I beleive within the

month in the university of wa hospital. I am on the transplant list

look at the rules there are other appetite suppresents out their. DO

NOT TOUCH MARIJAUNA IF YOU HAVE TO GET A TRANSPLANT!!!

SINCERELY

JULIE

[Guest guest]

Hi I am putting my two cents in regarding marijauna if you seek a

transplant you should not touch this drug. there was a man dying of

liver faliure and needed a transplant to save his life. he was turned

down at Swedish in Seattle and University of WA in Seattle even though

he was perscribed medical marijuana. He died I beleive within the

month in the university of wa hospital. I am on the transplant list

look at the rules there are other appetite suppresents out their. DO

NOT TOUCH MARIJAUNA IF YOU HAVE TO GET A TRANSPLANT!!!

SINCERELY

JULIE