Re: Updated List of Q's for Doc's

[Guest guest]

Great job, Thanks for putting this together

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]

Great job, Thanks for putting this together

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]

Great job, Thanks for putting this together

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]

RossI like it. Specifically since it splits it up. ShaulPSC UCSent via BlackBerry by AT&TFrom: Ross Heil Date: Thu, 8 Jan 2009 16:12:46 -0800 (PST)To: < >Subject: Updated List of Q's for Doc's Okay, I appreciate all those who responded and I have added your suggestions accordingly. Please review the revised list again and add any more questions and give any suggestions. Thanks again! PSC Questions for New Patients Should Ursodiol play a role in my management of PSC? If yes, what dosage?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? Phototherapy with tanning beds?Is it safe to smoke Marijuana with known liver disease such as PSC?Are fish oils an acceptable supplement? If yes, what dosage would you recommend?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?At what point would you want me to call regarding symptoms, and forwhich symptoms would you want me to go straight to an ER?Can I have my routine labs drawn before my appointments so that wemay discuss the results in person?Are any of my current medications problematic?If I have a headache or musculoskeletal pain what over the counter medications would you recommend? What should I avoid? PSC Questions for follow up visitsUpon average, when does bile duct cancer (cholangiocarcinoma, aka the Klatskin tumor) arise from the time diagnosed with PSC? Does Ursodiol decrease the incidence of cholangiocarcinoma? What about decreasing the chance of colon cancer?If bile duct cancer is suspected and brush scrapings are done, will you send the sample to Rochester Mayo for FISH staining?How often do you recommend an ERCP or MRCP?How often should I have a colonoscopy?How often should I have an abdominal ultrasound? How did my gallbladder appear? Any evidence of ascities? Any specious lesions?How often should a CA 19-9 level be drawn?How often should my INR/PT, Albumin, AST, ALT, Alkaline Phosphatase, Total Bilirubin, and Direct Bilirubin be drawn?What is my MELD score?Can I have a copy of my blood and diagnostic test results?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?How often should a bone density test be done?What vaccinations are required since I have liver disease? From: jeffmn54 <jswdi (AT) yahoo (DOT) com>Subject: Re: Q's for Docs from newly dx personsTo: Date: Wednesday, January 7, 2009, 10:07 AMRoss,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]

Again….

Is it ok to smoke marijuana?

1. You’re

basically admitting you do, did or want to.

2. Smoking marijuana is

illegal, what doctor in his right mind will say yes to an illegal activity?

3. Trouble getting listed may be looming, if the doctor notes that in

your chart.

Barb in Texas - Together in the Fight - Whatever it

Takes!

Son Ken (34) UC 91 PSC 99, LTX 6/21 & 6/30 2007

@ Baylor/Dallas

[Guest guest]

Again….

Is it ok to smoke marijuana?

1. You’re

basically admitting you do, did or want to.

2. Smoking marijuana is

illegal, what doctor in his right mind will say yes to an illegal activity?

3. Trouble getting listed may be looming, if the doctor notes that in

your chart.

Barb in Texas - Together in the Fight - Whatever it

Takes!

Son Ken (34) UC 91 PSC 99, LTX 6/21 & 6/30 2007

@ Baylor/Dallas

[Guest guest]

Again….

Is it ok to smoke marijuana?

1. You’re

basically admitting you do, did or want to.

2. Smoking marijuana is

illegal, what doctor in his right mind will say yes to an illegal activity?

3. Trouble getting listed may be looming, if the doctor notes that in

your chart.

Barb in Texas - Together in the Fight - Whatever it

Takes!

Son Ken (34) UC 91 PSC 99, LTX 6/21 & 6/30 2007

@ Baylor/Dallas

[Guest guest]

I agree with Barb. That question belongs right beside the questions about doing crystal meth and the one about doing crack cocaine. Are you wanting to hear how strongly the doctor is against doing marijuana???

I would ask specifically about how high (or low) a fever should you go to the ER.

Ian

Again…. Is it ok to smoke marijuana?

1. You're basically admitting you do, did or want to.

2. Smoking marijuana is illegal, what doctor in his right mind will say yes to an illegal activity?

3. Trouble getting listed may be looming, if the doctor notes that in your chart.

Barb in Texas - Together in the Fight - Whatever it Takes!

Son Ken (34) UC 91 PSC 99, LTX 6/21 & 6/30 2007 @ Baylor/Dallas

-- Ian Cribb P.Eng.

[Guest guest]

I agree with Barb. That question belongs right beside the questions about doing crystal meth and the one about doing crack cocaine. Are you wanting to hear how strongly the doctor is against doing marijuana???

I would ask specifically about how high (or low) a fever should you go to the ER.

Ian

Again…. Is it ok to smoke marijuana?

1. You're basically admitting you do, did or want to.

2. Smoking marijuana is illegal, what doctor in his right mind will say yes to an illegal activity?

3. Trouble getting listed may be looming, if the doctor notes that in your chart.

Barb in Texas - Together in the Fight - Whatever it Takes!

Son Ken (34) UC 91 PSC 99, LTX 6/21 & 6/30 2007 @ Baylor/Dallas

-- Ian Cribb P.Eng.

[Guest guest]

I want to preface this post by stating that I have never taken any illegal substances and I never intend to. However, I have been given prescription narcotics following J-pouch surgeries and an especially bad car accident. I have always wondered about the effects that those prescription meds had on my liver (I believe I had Percocet after J pouch surgeries, and tylenol with codeine and a muscle relaxor after the car accident).

When I ask the surgeon preforming my J pouch surgery about pain control in the setting of my PSC his response was to consider the alternative if I didn't take pain meds and be keeled over in pain. Although I was only on the Percocet for a total of about 3-4 weeks following each surgery, it was a pretty heavy dose. All in all, I considered that my physcians at Mayo Clinic where I had my J pouch surgeries had my best interest in midn when I was given the prescriptions and I didn't ask more questions. But, in the setting of this question about Marijuana (isn't that considered as powerful as morphine?) and especially with many states legalizing medical marijuana - I think the question deserves to be answered. What kind of damage do narcotics do to our livers? For that matter, how much do we damage our livers when we have sedation for a colonoscopy, ERCP, or liver biopsy done? Aren't these drugs going to do some damage to our livers as well?

Rick

-------------- Original message --------------

I agree with Barb. That question belongs right beside the questions about doing crystal meth and the one about doing crack cocaine. Are you wanting to hear how strongly the doctor is against doing marijuana???

I would ask specifically about how high (or low) a fever should you go to the ER.

Ian

On 1/9/09, Barb Henshaw <barbhenshaw (AT) peoplescom (DOT) net> wrote:

Again…. Is it ok to smoke marijuana?

1. You're basically admitting you do, did or want to.

2. Smoking marijuana is illegal, what doctor in his right mind will say yes to an illegal activity?

3. Trouble getting listed may be looming, if the doctor notes that in your chart.

Barb in Texas - Together in the Fight - Whatever it Takes!

Son Ken (34) UC 91 PSC 99, LTX 6/21 & 6/30 2007 @ Baylor/Dallas

-- Ian Cribb P.Eng.

[Guest guest]

I want to preface this post by stating that I have never taken any illegal substances and I never intend to. However, I have been given prescription narcotics following J-pouch surgeries and an especially bad car accident. I have always wondered about the effects that those prescription meds had on my liver (I believe I had Percocet after J pouch surgeries, and tylenol with codeine and a muscle relaxor after the car accident).

When I ask the surgeon preforming my J pouch surgery about pain control in the setting of my PSC his response was to consider the alternative if I didn't take pain meds and be keeled over in pain. Although I was only on the Percocet for a total of about 3-4 weeks following each surgery, it was a pretty heavy dose. All in all, I considered that my physcians at Mayo Clinic where I had my J pouch surgeries had my best interest in midn when I was given the prescriptions and I didn't ask more questions. But, in the setting of this question about Marijuana (isn't that considered as powerful as morphine?) and especially with many states legalizing medical marijuana - I think the question deserves to be answered. What kind of damage do narcotics do to our livers? For that matter, how much do we damage our livers when we have sedation for a colonoscopy, ERCP, or liver biopsy done? Aren't these drugs going to do some damage to our livers as well?

Rick

-------------- Original message --------------

I agree with Barb. That question belongs right beside the questions about doing crystal meth and the one about doing crack cocaine. Are you wanting to hear how strongly the doctor is against doing marijuana???

I would ask specifically about how high (or low) a fever should you go to the ER.

Ian

On 1/9/09, Barb Henshaw <barbhenshaw (AT) peoplescom (DOT) net> wrote:

Again…. Is it ok to smoke marijuana?

1. You're basically admitting you do, did or want to.

2. Smoking marijuana is illegal, what doctor in his right mind will say yes to an illegal activity?

3. Trouble getting listed may be looming, if the doctor notes that in your chart.

Barb in Texas - Together in the Fight - Whatever it Takes!

Son Ken (34) UC 91 PSC 99, LTX 6/21 & 6/30 2007 @ Baylor/Dallas

-- Ian Cribb P.Eng.

[Guest guest]

I want to preface this post by stating that I have never taken any illegal substances and I never intend to. However, I have been given prescription narcotics following J-pouch surgeries and an especially bad car accident. I have always wondered about the effects that those prescription meds had on my liver (I believe I had Percocet after J pouch surgeries, and tylenol with codeine and a muscle relaxor after the car accident).

When I ask the surgeon preforming my J pouch surgery about pain control in the setting of my PSC his response was to consider the alternative if I didn't take pain meds and be keeled over in pain. Although I was only on the Percocet for a total of about 3-4 weeks following each surgery, it was a pretty heavy dose. All in all, I considered that my physcians at Mayo Clinic where I had my J pouch surgeries had my best interest in midn when I was given the prescriptions and I didn't ask more questions. But, in the setting of this question about Marijuana (isn't that considered as powerful as morphine?) and especially with many states legalizing medical marijuana - I think the question deserves to be answered. What kind of damage do narcotics do to our livers? For that matter, how much do we damage our livers when we have sedation for a colonoscopy, ERCP, or liver biopsy done? Aren't these drugs going to do some damage to our livers as well?

Rick

-------------- Original message --------------

I agree with Barb. That question belongs right beside the questions about doing crystal meth and the one about doing crack cocaine. Are you wanting to hear how strongly the doctor is against doing marijuana???

I would ask specifically about how high (or low) a fever should you go to the ER.

Ian

On 1/9/09, Barb Henshaw <barbhenshaw (AT) peoplescom (DOT) net> wrote:

Again…. Is it ok to smoke marijuana?

1. You're basically admitting you do, did or want to.

2. Smoking marijuana is illegal, what doctor in his right mind will say yes to an illegal activity?

3. Trouble getting listed may be looming, if the doctor notes that in your chart.

Barb in Texas - Together in the Fight - Whatever it Takes!

Son Ken (34) UC 91 PSC 99, LTX 6/21 & 6/30 2007 @ Baylor/Dallas

-- Ian Cribb P.Eng.