RE: Help anybody that reads this

[Guest guest]

Marna,

 

I don't think they NEED a scan, ultrasound, MRI or something before they do a liver biopsy. I'm not sure what they are expecting to find which is causing the low blood counts. They might schedule him for some other tests after they see the results of the first tests. Generally a second opinion doesn't hurt (if there isn't any financial ramifications). It doesn't sound like they have given you a first opinion yet (just scheduled some tests).

Ian (52) PSC 89

 

This is Marna with 14 year old Wesley. I am at s Hopkins. I just found out that an MRCP was read wrong in April 2006. ( It said Normal....which I told the gastro that did not sound write and he blew it off ,,,did a punch biopsy that showed 3rd stage with beading ) No jaundice, no itching, Hemoglobin 12.6.

Sept 24, 2008 Wesley was looking gaunt and had a hemoglobin of 10.2 and low white count. and low RBCNow 2/27/09 he looks really bad ( gaunt )...quit growing,,,has a 8.6 hemoglobin and 3.7 white count,,,

the MRCP in 2006 read moderately enlarged spleen with what looked like enlarged lymph nodes. MY QUESTION IS SHOULDN'T THEY BE DOING SOMETHING TO LOOK AT HIS SPLEEN AGAIN ? ALL THEY HAVE HIM SCHEDULED FOR ARE COLONOSCOPY, ENDOSCOPY, AND LIVER BIOPSY. DON'T THEY NEED A SCAN , ULTRASOUND , MRI OR SOMETHING FIRST ?

I AM A NURSE AND TO ME THEY ARE NOT DOING RIGHT,,,THE DOCTOR HAD A BAD ATTITUDE BECAUSE I CAME FROM OUT OF STATE. SHE BASICALLY SAID GO BACK TO TEXAS !MARNAMY SISTER IS AN ER NURSE AND SAID HE SHOULD HAVE POSSIBLY BEEN ADMITTED AND THAT I SHOULD JUST WALK IN THE ER FOR A SECOND OPINION ?

-- Ian Cribb  P.Eng. (6...

[Guest guest]

Marna,

 

I don't think they NEED a scan, ultrasound, MRI or something before they do a liver biopsy. I'm not sure what they are expecting to find which is causing the low blood counts. They might schedule him for some other tests after they see the results of the first tests. Generally a second opinion doesn't hurt (if there isn't any financial ramifications). It doesn't sound like they have given you a first opinion yet (just scheduled some tests).

Ian (52) PSC 89

 

This is Marna with 14 year old Wesley. I am at s Hopkins. I just found out that an MRCP was read wrong in April 2006. ( It said Normal....which I told the gastro that did not sound write and he blew it off ,,,did a punch biopsy that showed 3rd stage with beading ) No jaundice, no itching, Hemoglobin 12.6.

Sept 24, 2008 Wesley was looking gaunt and had a hemoglobin of 10.2 and low white count. and low RBCNow 2/27/09 he looks really bad ( gaunt )...quit growing,,,has a 8.6 hemoglobin and 3.7 white count,,,

the MRCP in 2006 read moderately enlarged spleen with what looked like enlarged lymph nodes. MY QUESTION IS SHOULDN'T THEY BE DOING SOMETHING TO LOOK AT HIS SPLEEN AGAIN ? ALL THEY HAVE HIM SCHEDULED FOR ARE COLONOSCOPY, ENDOSCOPY, AND LIVER BIOPSY. DON'T THEY NEED A SCAN , ULTRASOUND , MRI OR SOMETHING FIRST ?

I AM A NURSE AND TO ME THEY ARE NOT DOING RIGHT,,,THE DOCTOR HAD A BAD ATTITUDE BECAUSE I CAME FROM OUT OF STATE. SHE BASICALLY SAID GO BACK TO TEXAS !MARNAMY SISTER IS AN ER NURSE AND SAID HE SHOULD HAVE POSSIBLY BEEN ADMITTED AND THAT I SHOULD JUST WALK IN THE ER FOR A SECOND OPINION ?

-- Ian Cribb  P.Eng. (6...

[Guest guest]

Marna,

 

I don't think they NEED a scan, ultrasound, MRI or something before they do a liver biopsy. I'm not sure what they are expecting to find which is causing the low blood counts. They might schedule him for some other tests after they see the results of the first tests. Generally a second opinion doesn't hurt (if there isn't any financial ramifications). It doesn't sound like they have given you a first opinion yet (just scheduled some tests).

Ian (52) PSC 89

 

This is Marna with 14 year old Wesley. I am at s Hopkins. I just found out that an MRCP was read wrong in April 2006. ( It said Normal....which I told the gastro that did not sound write and he blew it off ,,,did a punch biopsy that showed 3rd stage with beading ) No jaundice, no itching, Hemoglobin 12.6.

Sept 24, 2008 Wesley was looking gaunt and had a hemoglobin of 10.2 and low white count. and low RBCNow 2/27/09 he looks really bad ( gaunt )...quit growing,,,has a 8.6 hemoglobin and 3.7 white count,,,

the MRCP in 2006 read moderately enlarged spleen with what looked like enlarged lymph nodes. MY QUESTION IS SHOULDN'T THEY BE DOING SOMETHING TO LOOK AT HIS SPLEEN AGAIN ? ALL THEY HAVE HIM SCHEDULED FOR ARE COLONOSCOPY, ENDOSCOPY, AND LIVER BIOPSY. DON'T THEY NEED A SCAN , ULTRASOUND , MRI OR SOMETHING FIRST ?

I AM A NURSE AND TO ME THEY ARE NOT DOING RIGHT,,,THE DOCTOR HAD A BAD ATTITUDE BECAUSE I CAME FROM OUT OF STATE. SHE BASICALLY SAID GO BACK TO TEXAS !MARNAMY SISTER IS AN ER NURSE AND SAID HE SHOULD HAVE POSSIBLY BEEN ADMITTED AND THAT I SHOULD JUST WALK IN THE ER FOR A SECOND OPINION ?

-- Ian Cribb  P.Eng. (6...

[Guest guest]

I live in MD and I refuse to be treated at Hopkins because of things like that.

I was seen there a few years ago and the Doctor told me that he did not care

that I have had two biopsies (one confirmed by MAYO) that say I have PSC and a

ton of MRCP's saying I have PSC, he's a specialist and I do not have it. My

elevated Alk Phos is from my Bones. They ran a diffeential and it showed that

the alk phos was absolutely from my liver and he still said that I had the wrong

DX. He was arrogant and rude. He infomred me that there is no such thing as

small duct PSC, that some people in the field just make up terms to please

themselves.

I thanked him for his opinion and informed him that I would no longer need his

services.

I then transfered my care to the University of land. Many of my friend and

clients have been seriously put off by the way they have been treated by the

staff at Hopkins and no longer willing to go there.

Write letters and demand a consult from another doctor. call your insurance

carrier and ask for a consult. Call the patient advocate. Speak up but be

polite. Also make it very clear that if you son deteriorates because of their

negligence that your attorney will be sure to fill suite immediately. Hopkins

has been held liable a lot lately for things ranging from breach of

confidentiality through medical errors.

GOod luck SOrry I went on a rant, but this stuff makes me mad!!

Dawn

>

> This is Marna with 14 year old Wesley. I am at s Hopkins. I just found

out that an MRCP was read wrong in April 2006. ( It said Normal....which I told

the gastro that did not sound write and he blew it off ,,,did a punch biopsy

that showed 3rd stage with beading ) No jaundice, no itching, Hemoglobin 12.6.

>

> Sept 24, 2008 Wesley was looking gaunt and had a hemoglobin of 10.2 and low

white count. and low RBC

>

> Now 2/27/09 he looks really bad ( gaunt )...quit growing,,,has a 8.6

hemoglobin and 3.7 white count,,,

>

> the MRCP in 2006 read moderately enlarged spleen with what looked like

enlarged lymph nodes.

>

> MY QUESTION IS SHOULDN'T THEY BE DOING SOMETHING TO LOOK AT HIS SPLEEN AGAIN

? ALL THEY HAVE HIM SCHEDULED FOR ARE COLONOSCOPY, ENDOSCOPY, AND LIVER BIOPSY.

DON'T THEY NEED A SCAN , ULTRASOUND , MRI OR SOMETHING FIRST ?

>

> I AM A NURSE AND TO ME THEY ARE NOT DOING RIGHT,,,THE DOCTOR HAD A BAD

ATTITUDE BECAUSE I CAME FROM OUT OF STATE. SHE BASICALLY SAID GO BACK TO TEXAS !

>

> MARNA

>

> MY SISTER IS AN ER NURSE AND SAID HE SHOULD HAVE POSSIBLY BEEN ADMITTED AND

THAT I SHOULD JUST WALK IN THE ER FOR A SECOND OPINION ?

>

[Guest guest]

I live in MD and I refuse to be treated at Hopkins because of things like that.

I was seen there a few years ago and the Doctor told me that he did not care

that I have had two biopsies (one confirmed by MAYO) that say I have PSC and a

ton of MRCP's saying I have PSC, he's a specialist and I do not have it. My

elevated Alk Phos is from my Bones. They ran a diffeential and it showed that

the alk phos was absolutely from my liver and he still said that I had the wrong

DX. He was arrogant and rude. He infomred me that there is no such thing as

small duct PSC, that some people in the field just make up terms to please

themselves.

I thanked him for his opinion and informed him that I would no longer need his

services.

I then transfered my care to the University of land. Many of my friend and

clients have been seriously put off by the way they have been treated by the

staff at Hopkins and no longer willing to go there.

Write letters and demand a consult from another doctor. call your insurance

carrier and ask for a consult. Call the patient advocate. Speak up but be

polite. Also make it very clear that if you son deteriorates because of their

negligence that your attorney will be sure to fill suite immediately. Hopkins

has been held liable a lot lately for things ranging from breach of

confidentiality through medical errors.

GOod luck SOrry I went on a rant, but this stuff makes me mad!!

Dawn

>

> This is Marna with 14 year old Wesley. I am at s Hopkins. I just found

out that an MRCP was read wrong in April 2006. ( It said Normal....which I told

the gastro that did not sound write and he blew it off ,,,did a punch biopsy

that showed 3rd stage with beading ) No jaundice, no itching, Hemoglobin 12.6.

>

> Sept 24, 2008 Wesley was looking gaunt and had a hemoglobin of 10.2 and low

white count. and low RBC

>

> Now 2/27/09 he looks really bad ( gaunt )...quit growing,,,has a 8.6

hemoglobin and 3.7 white count,,,

>

> the MRCP in 2006 read moderately enlarged spleen with what looked like

enlarged lymph nodes.

>

> MY QUESTION IS SHOULDN'T THEY BE DOING SOMETHING TO LOOK AT HIS SPLEEN AGAIN

? ALL THEY HAVE HIM SCHEDULED FOR ARE COLONOSCOPY, ENDOSCOPY, AND LIVER BIOPSY.

DON'T THEY NEED A SCAN , ULTRASOUND , MRI OR SOMETHING FIRST ?

>

> I AM A NURSE AND TO ME THEY ARE NOT DOING RIGHT,,,THE DOCTOR HAD A BAD

ATTITUDE BECAUSE I CAME FROM OUT OF STATE. SHE BASICALLY SAID GO BACK TO TEXAS !

>

> MARNA

>

> MY SISTER IS AN ER NURSE AND SAID HE SHOULD HAVE POSSIBLY BEEN ADMITTED AND

THAT I SHOULD JUST WALK IN THE ER FOR A SECOND OPINION ?

>

[Guest guest]

I live in MD and I refuse to be treated at Hopkins because of things like that.

I was seen there a few years ago and the Doctor told me that he did not care

that I have had two biopsies (one confirmed by MAYO) that say I have PSC and a

ton of MRCP's saying I have PSC, he's a specialist and I do not have it. My

elevated Alk Phos is from my Bones. They ran a diffeential and it showed that

the alk phos was absolutely from my liver and he still said that I had the wrong

DX. He was arrogant and rude. He infomred me that there is no such thing as

small duct PSC, that some people in the field just make up terms to please

themselves.

I thanked him for his opinion and informed him that I would no longer need his

services.

I then transfered my care to the University of land. Many of my friend and

clients have been seriously put off by the way they have been treated by the

staff at Hopkins and no longer willing to go there.

Write letters and demand a consult from another doctor. call your insurance

carrier and ask for a consult. Call the patient advocate. Speak up but be

polite. Also make it very clear that if you son deteriorates because of their

negligence that your attorney will be sure to fill suite immediately. Hopkins

has been held liable a lot lately for things ranging from breach of

confidentiality through medical errors.

GOod luck SOrry I went on a rant, but this stuff makes me mad!!

Dawn

>

> This is Marna with 14 year old Wesley. I am at s Hopkins. I just found

out that an MRCP was read wrong in April 2006. ( It said Normal....which I told

the gastro that did not sound write and he blew it off ,,,did a punch biopsy

that showed 3rd stage with beading ) No jaundice, no itching, Hemoglobin 12.6.

>

> Sept 24, 2008 Wesley was looking gaunt and had a hemoglobin of 10.2 and low

white count. and low RBC

>

> Now 2/27/09 he looks really bad ( gaunt )...quit growing,,,has a 8.6

hemoglobin and 3.7 white count,,,

>

> the MRCP in 2006 read moderately enlarged spleen with what looked like

enlarged lymph nodes.

>

> MY QUESTION IS SHOULDN'T THEY BE DOING SOMETHING TO LOOK AT HIS SPLEEN AGAIN

? ALL THEY HAVE HIM SCHEDULED FOR ARE COLONOSCOPY, ENDOSCOPY, AND LIVER BIOPSY.

DON'T THEY NEED A SCAN , ULTRASOUND , MRI OR SOMETHING FIRST ?

>

> I AM A NURSE AND TO ME THEY ARE NOT DOING RIGHT,,,THE DOCTOR HAD A BAD

ATTITUDE BECAUSE I CAME FROM OUT OF STATE. SHE BASICALLY SAID GO BACK TO TEXAS !

>

> MARNA

>

> MY SISTER IS AN ER NURSE AND SAID HE SHOULD HAVE POSSIBLY BEEN ADMITTED AND

THAT I SHOULD JUST WALK IN THE ER FOR A SECOND OPINION ?

>

[Guest guest]

-----Original

Message-----

MY QUESTION IS

SHOULDN'T THEY BE DOING SOMETHING TO LOOK AT HIS SPLEEN AGAIN

? _

From our experience (Pre

& Post transplant) the answer is no.

Everyone with liver disease is going to eventually get

an enlarged spleen. As the blood

backs up from the liver, it moves back into the spleen and

the spleen loves it some good blood (especially red blood cells, both good and

bad and platelets – Yum Yum)!

Just when you think the spleen can’t get any bigger – it will!! And that’s OK, because

after transplant it will go back down to normal size. What is normally fist size, under the

ribs, can grow very fat and very long all the

way well past the navel. The neat

thing about the spleen is this, even though it’s eating more than it’s

weight in blood, the goodies are still in the body and when needed (like an

infection or major bleed) some trapped blood cells can still do that thing they

do from the spleen. As far as

checking it, it’s almost impossible to check the liver (CT, MRI, Ultra Sound

even X-Ray) without seeing the spleen, so while it might not appear to you they

aren’t checking it, they are and will see it and report on it whenever

one of these other tests are taken.

BTW, I have 2 spleens! HTH

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]

-----Original

Message-----

MY QUESTION IS

SHOULDN'T THEY BE DOING SOMETHING TO LOOK AT HIS SPLEEN AGAIN

? _

From our experience (Pre

& Post transplant) the answer is no.

Everyone with liver disease is going to eventually get

an enlarged spleen. As the blood

backs up from the liver, it moves back into the spleen and

the spleen loves it some good blood (especially red blood cells, both good and

bad and platelets – Yum Yum)!

Just when you think the spleen can’t get any bigger – it will!! And that’s OK, because

after transplant it will go back down to normal size. What is normally fist size, under the

ribs, can grow very fat and very long all the

way well past the navel. The neat

thing about the spleen is this, even though it’s eating more than it’s

weight in blood, the goodies are still in the body and when needed (like an

infection or major bleed) some trapped blood cells can still do that thing they

do from the spleen. As far as

checking it, it’s almost impossible to check the liver (CT, MRI, Ultra Sound

even X-Ray) without seeing the spleen, so while it might not appear to you they

aren’t checking it, they are and will see it and report on it whenever

one of these other tests are taken.

BTW, I have 2 spleens! HTH

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]

THEY ACTED LIKE WESLEY DID NOT HAVE PSC....THAT WAS A ROLLING THE EYES MOMENT

FOR WESLEY AND ME ! LOL....WESLEY WAS PUNCH BIOPSY DIAGNOSED WITH SMALL DUCT PSC

AT AGE 3 FROM DR. DAVID KELJO (THEN AT DALLAS, NOW AT PITTSBURGH ) WHEN HIS

ENZYMES WERE 1100

.....THEN ERCP AT AGE 6 PSC FROM DR. SAUL KARPEN ( HEAD OF TEXAS CHILDREN'S LIVER

)

....THEN GENE WHITINGTON (HEAD OF PSC MORGAN FOUNDATION )

....THEN 2006 THIRD STAGE BEADING PSC FROM A PUNCH BIOPSY WITH DR. SAUL KARPEN

AT TEXAS CHILDREN'S...........

......BUT HOPKINS IS GOING TO TELL ME AFTER 13 YEARS OF THIS AND THIS MANY WELL

KNOWN MD'S THAT HE MIGHT NOT HAVE IT....LOL....GLAD I AM SMARTER THAN THEM ! LOL

THIS IS NOT ROCKET SCIENCE!

THE CAPS ARE FOR HUMOR,,,NOT YELLING LOL....

MARNA

> >

> > This is Marna with 14 year old Wesley. I am at s Hopkins. I just found

out that an MRCP was read wrong in April 2006. ( It said Normal....which I told

the gastro that did not sound write and he blew it off ,,,did a punch biopsy

that showed 3rd stage with beading ) No jaundice, no itching, Hemoglobin 12.6.

> >

> > Sept 24, 2008 Wesley was looking gaunt and had a hemoglobin of 10.2 and low

white count. and low RBC

> >

> > Now 2/27/09 he looks really bad ( gaunt )...quit growing,,,has a 8.6

hemoglobin and 3.7 white count,,,

> >

> > the MRCP in 2006 read moderately enlarged spleen with what looked like

enlarged lymph nodes.

> >

> > MY QUESTION IS SHOULDN'T THEY BE DOING SOMETHING TO LOOK AT HIS SPLEEN

AGAIN ? ALL THEY HAVE HIM SCHEDULED FOR ARE COLONOSCOPY, ENDOSCOPY, AND LIVER

BIOPSY. DON'T THEY NEED A SCAN , ULTRASOUND , MRI OR SOMETHING FIRST ?

> >

> > I AM A NURSE AND TO ME THEY ARE NOT DOING RIGHT,,,THE DOCTOR HAD A BAD

ATTITUDE BECAUSE I CAME FROM OUT OF STATE. SHE BASICALLY SAID GO BACK TO TEXAS !

> >

> > MARNA

> >

> > MY SISTER IS AN ER NURSE AND SAID HE SHOULD HAVE POSSIBLY BEEN ADMITTED AND

THAT I SHOULD JUST WALK IN THE ER FOR A SECOND OPINION ?

> >

>

[Guest guest]

THEY ACTED LIKE WESLEY DID NOT HAVE PSC....THAT WAS A ROLLING THE EYES MOMENT

FOR WESLEY AND ME ! LOL....WESLEY WAS PUNCH BIOPSY DIAGNOSED WITH SMALL DUCT PSC

AT AGE 3 FROM DR. DAVID KELJO (THEN AT DALLAS, NOW AT PITTSBURGH ) WHEN HIS

ENZYMES WERE 1100

.....THEN ERCP AT AGE 6 PSC FROM DR. SAUL KARPEN ( HEAD OF TEXAS CHILDREN'S LIVER

)

....THEN GENE WHITINGTON (HEAD OF PSC MORGAN FOUNDATION )

....THEN 2006 THIRD STAGE BEADING PSC FROM A PUNCH BIOPSY WITH DR. SAUL KARPEN

AT TEXAS CHILDREN'S...........

......BUT HOPKINS IS GOING TO TELL ME AFTER 13 YEARS OF THIS AND THIS MANY WELL

KNOWN MD'S THAT HE MIGHT NOT HAVE IT....LOL....GLAD I AM SMARTER THAN THEM ! LOL

THIS IS NOT ROCKET SCIENCE!

THE CAPS ARE FOR HUMOR,,,NOT YELLING LOL....

MARNA

> >

> > This is Marna with 14 year old Wesley. I am at s Hopkins. I just found

out that an MRCP was read wrong in April 2006. ( It said Normal....which I told

the gastro that did not sound write and he blew it off ,,,did a punch biopsy

that showed 3rd stage with beading ) No jaundice, no itching, Hemoglobin 12.6.

> >

> > Sept 24, 2008 Wesley was looking gaunt and had a hemoglobin of 10.2 and low

white count. and low RBC

> >

> > Now 2/27/09 he looks really bad ( gaunt )...quit growing,,,has a 8.6

hemoglobin and 3.7 white count,,,

> >

> > the MRCP in 2006 read moderately enlarged spleen with what looked like

enlarged lymph nodes.

> >

> > MY QUESTION IS SHOULDN'T THEY BE DOING SOMETHING TO LOOK AT HIS SPLEEN

AGAIN ? ALL THEY HAVE HIM SCHEDULED FOR ARE COLONOSCOPY, ENDOSCOPY, AND LIVER

BIOPSY. DON'T THEY NEED A SCAN , ULTRASOUND , MRI OR SOMETHING FIRST ?

> >

> > I AM A NURSE AND TO ME THEY ARE NOT DOING RIGHT,,,THE DOCTOR HAD A BAD

ATTITUDE BECAUSE I CAME FROM OUT OF STATE. SHE BASICALLY SAID GO BACK TO TEXAS !

> >

> > MARNA

> >

> > MY SISTER IS AN ER NURSE AND SAID HE SHOULD HAVE POSSIBLY BEEN ADMITTED AND

THAT I SHOULD JUST WALK IN THE ER FOR A SECOND OPINION ?

> >

>

[Guest guest]

That was exactly my experience with Hopkins. s I said I will not go back there

because I the level of arogance and the way I was treated.

I feel what you are saying

Dawn

>

> THEY ACTED LIKE WESLEY DID NOT HAVE PSC....THAT WAS A ROLLING THE EYES MOMENT

FOR WESLEY AND ME ! LOL....WESLEY WAS PUNCH BIOPSY DIAGNOSED WITH SMALL DUCT PSC

AT AGE 3 FROM DR. DAVID KELJO (THEN AT DALLAS, NOW AT PITTSBURGH ) WHEN HIS

ENZYMES WERE 1100

>

> ....THEN ERCP AT AGE 6 PSC FROM DR. SAUL KARPEN ( HEAD OF TEXAS CHILDREN'S

LIVER )

>

> ...THEN GENE WHITINGTON (HEAD OF PSC MORGAN FOUNDATION )

>

> ....THEN 2006 THIRD STAGE BEADING PSC FROM A PUNCH BIOPSY WITH DR. SAUL

KARPEN AT TEXAS CHILDREN'S...........

>

> .....BUT HOPKINS IS GOING TO TELL ME AFTER 13 YEARS OF THIS AND THIS MANY WELL

KNOWN MD'S THAT HE MIGHT NOT HAVE IT....LOL....GLAD I AM SMARTER THAN THEM ! LOL

>

> THIS IS NOT ROCKET SCIENCE!

>

> THE CAPS ARE FOR HUMOR,,,NOT YELLING LOL....

>

> MARNA

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

That was exactly my experience with Hopkins. s I said I will not go back there

because I the level of arogance and the way I was treated.

I feel what you are saying

Dawn

>

> THEY ACTED LIKE WESLEY DID NOT HAVE PSC....THAT WAS A ROLLING THE EYES MOMENT

FOR WESLEY AND ME ! LOL....WESLEY WAS PUNCH BIOPSY DIAGNOSED WITH SMALL DUCT PSC

AT AGE 3 FROM DR. DAVID KELJO (THEN AT DALLAS, NOW AT PITTSBURGH ) WHEN HIS

ENZYMES WERE 1100

>

> ....THEN ERCP AT AGE 6 PSC FROM DR. SAUL KARPEN ( HEAD OF TEXAS CHILDREN'S

LIVER )

>

> ...THEN GENE WHITINGTON (HEAD OF PSC MORGAN FOUNDATION )

>

> ....THEN 2006 THIRD STAGE BEADING PSC FROM A PUNCH BIOPSY WITH DR. SAUL

KARPEN AT TEXAS CHILDREN'S...........

>

> .....BUT HOPKINS IS GOING TO TELL ME AFTER 13 YEARS OF THIS AND THIS MANY WELL

KNOWN MD'S THAT HE MIGHT NOT HAVE IT....LOL....GLAD I AM SMARTER THAN THEM ! LOL

>

> THIS IS NOT ROCKET SCIENCE!

>

> THE CAPS ARE FOR HUMOR,,,NOT YELLING LOL....

>

> MARNA

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

M a r n a,

 

Generally doctors don't believe in miracals (they would rather think previous diagnosis was a mistake)! Congratulations! I like the capitals, especially for your name (small " r " followed by small " n "   looks like small " m " and was being misread by me as you signing as M a m a. which was leading me to a very wrong mental picture of you! ;o) lol) (I use larger letters when I write, because my eyes sometimes have trouble reading the small ones)

 

Ian (52) PSC 89 

THEY ACTED LIKE WESLEY DID NOT HAVE PSC....THAT WAS A ROLLING THE EYES MOMENT FOR WESLEY AND ME ! LOL....WESLEY WAS PUNCH BIOPSY DIAGNOSED WITH SMALL DUCT PSC AT AGE 3 FROM DR. DAVID KELJO (THEN AT DALLAS, NOW AT PITTSBURGH ) WHEN HIS ENZYMES WERE 1100

.....THEN ERCP AT AGE 6 PSC FROM DR. SAUL KARPEN ( HEAD OF TEXAS CHILDREN'S LIVER )...THEN GENE WHITINGTON (HEAD OF PSC MORGAN FOUNDATION )....THEN 2006 THIRD STAGE BEADING PSC FROM A PUNCH BIOPSY WITH DR. SAUL KARPEN AT TEXAS CHILDREN'S...........

......BUT HOPKINS IS GOING TO TELL ME AFTER 13 YEARS OF THIS AND THIS MANY WELL KNOWN MD'S THAT HE MIGHT NOT HAVE IT....LOL....GLAD I AM SMARTER THAN THEM ! LOL THIS IS NOT ROCKET SCIENCE! THE CAPS ARE FOR HUMOR,,,NOT YELLING LOL....

MARNA

> >> > This is Marna with 14 year old Wesley. I am at s Hopkins. I just found out that an MRCP was read wrong in April 2006. ( It said Normal....which I told the gastro that did not sound write and he blew it off ,,,did a punch biopsy that showed 3rd stage with beading ) No jaundice, no itching, Hemoglobin 12.6.

> > > > Sept 24, 2008 Wesley was looking gaunt and had a hemoglobin of 10.2 and low white count. and low RBC> > > > Now 2/27/09 he looks really bad ( gaunt )...quit growing,,,has a 8.6 hemoglobin and 3.7 white count,,,

> > > > the MRCP in 2006 read moderately enlarged spleen with what looked like enlarged lymph nodes. > > > > MY QUESTION IS SHOULDN'T THEY BE DOING SOMETHING TO LOOK AT HIS SPLEEN AGAIN ? ALL THEY HAVE HIM SCHEDULED FOR ARE COLONOSCOPY, ENDOSCOPY, AND LIVER BIOPSY. DON'T THEY NEED A SCAN , ULTRASOUND , MRI OR SOMETHING FIRST ?

> > > > I AM A NURSE AND TO ME THEY ARE NOT DOING RIGHT,,,THE DOCTOR HAD A BAD ATTITUDE BECAUSE I CAME FROM OUT OF STATE. SHE BASICALLY SAID GO BACK TO TEXAS !> > > > MARNA> >

> > MY SISTER IS AN ER NURSE AND SAID HE SHOULD HAVE POSSIBLY BEEN ADMITTED AND THAT I SHOULD JUST WALK IN THE ER FOR A SECOND OPINION ?> >>

-- Ian Cribb  P.Eng. (6...

[Guest guest]

M a r n a,

 

Generally doctors don't believe in miracals (they would rather think previous diagnosis was a mistake)! Congratulations! I like the capitals, especially for your name (small " r " followed by small " n "   looks like small " m " and was being misread by me as you signing as M a m a. which was leading me to a very wrong mental picture of you! ;o) lol) (I use larger letters when I write, because my eyes sometimes have trouble reading the small ones)

 

Ian (52) PSC 89 

THEY ACTED LIKE WESLEY DID NOT HAVE PSC....THAT WAS A ROLLING THE EYES MOMENT FOR WESLEY AND ME ! LOL....WESLEY WAS PUNCH BIOPSY DIAGNOSED WITH SMALL DUCT PSC AT AGE 3 FROM DR. DAVID KELJO (THEN AT DALLAS, NOW AT PITTSBURGH ) WHEN HIS ENZYMES WERE 1100

.....THEN ERCP AT AGE 6 PSC FROM DR. SAUL KARPEN ( HEAD OF TEXAS CHILDREN'S LIVER )...THEN GENE WHITINGTON (HEAD OF PSC MORGAN FOUNDATION )....THEN 2006 THIRD STAGE BEADING PSC FROM A PUNCH BIOPSY WITH DR. SAUL KARPEN AT TEXAS CHILDREN'S...........

......BUT HOPKINS IS GOING TO TELL ME AFTER 13 YEARS OF THIS AND THIS MANY WELL KNOWN MD'S THAT HE MIGHT NOT HAVE IT....LOL....GLAD I AM SMARTER THAN THEM ! LOL THIS IS NOT ROCKET SCIENCE! THE CAPS ARE FOR HUMOR,,,NOT YELLING LOL....

MARNA

> >> > This is Marna with 14 year old Wesley. I am at s Hopkins. I just found out that an MRCP was read wrong in April 2006. ( It said Normal....which I told the gastro that did not sound write and he blew it off ,,,did a punch biopsy that showed 3rd stage with beading ) No jaundice, no itching, Hemoglobin 12.6.

> > > > Sept 24, 2008 Wesley was looking gaunt and had a hemoglobin of 10.2 and low white count. and low RBC> > > > Now 2/27/09 he looks really bad ( gaunt )...quit growing,,,has a 8.6 hemoglobin and 3.7 white count,,,

> > > > the MRCP in 2006 read moderately enlarged spleen with what looked like enlarged lymph nodes. > > > > MY QUESTION IS SHOULDN'T THEY BE DOING SOMETHING TO LOOK AT HIS SPLEEN AGAIN ? ALL THEY HAVE HIM SCHEDULED FOR ARE COLONOSCOPY, ENDOSCOPY, AND LIVER BIOPSY. DON'T THEY NEED A SCAN , ULTRASOUND , MRI OR SOMETHING FIRST ?

> > > > I AM A NURSE AND TO ME THEY ARE NOT DOING RIGHT,,,THE DOCTOR HAD A BAD ATTITUDE BECAUSE I CAME FROM OUT OF STATE. SHE BASICALLY SAID GO BACK TO TEXAS !> > > > MARNA> >

> > MY SISTER IS AN ER NURSE AND SAID HE SHOULD HAVE POSSIBLY BEEN ADMITTED AND THAT I SHOULD JUST WALK IN THE ER FOR A SECOND OPINION ?> >>

-- Ian Cribb  P.Eng. (6...

[Guest guest]

I always have to capitalize my name Marna....because people do read it as

Mama....I think people probably are wondering why I put MARNA...LOL....

glad you caught that Ian

> > > >

> > > > This is Marna with 14 year old Wesley. I am at s Hopkins. I just

> > found out that an MRCP was read wrong in April 2006. ( It said

> > Normal....which I told the gastro that did not sound write and he blew it

> > off ,,,did a punch biopsy that showed 3rd stage with beading ) No jaundice,

> > no itching, Hemoglobin 12.6.

> > > >

> > > > Sept 24, 2008 Wesley was looking gaunt and had a hemoglobin of 10.2 and

> > low white count. and low RBC

> > > >

> > > > Now 2/27/09 he looks really bad ( gaunt )...quit growing,,,has a 8.6

> > hemoglobin and 3.7 white count,,,

> > > >

> > > > the MRCP in 2006 read moderately enlarged spleen with what looked like

> > enlarged lymph nodes.

> > > >

> > > > MY QUESTION IS SHOULDN'T THEY BE DOING SOMETHING TO LOOK AT HIS SPLEEN

> > AGAIN ? ALL THEY HAVE HIM SCHEDULED FOR ARE COLONOSCOPY, ENDOSCOPY, AND

> > LIVER BIOPSY. DON'T THEY NEED A SCAN , ULTRASOUND , MRI OR SOMETHING FIRST ?

> > > >

> > > > I AM A NURSE AND TO ME THEY ARE NOT DOING RIGHT,,,THE DOCTOR HAD A BAD

> > ATTITUDE BECAUSE I CAME FROM OUT OF STATE. SHE BASICALLY SAID GO BACK TO

> > TEXAS !

> > > >

> > > > MARNA

> > > >

> > > > MY SISTER IS AN ER NURSE AND SAID HE SHOULD HAVE POSSIBLY BEEN ADMITTED

> > AND THAT I SHOULD JUST WALK IN THE ER FOR A SECOND OPINION ?

> > > >

> > >

> >

> >

> >

>

>

>

> --

> Ian Cribb P.Eng.

> (6...

>

[Guest guest]

I always have to capitalize my name Marna....because people do read it as

Mama....I think people probably are wondering why I put MARNA...LOL....

glad you caught that Ian

> > > >

> > > > This is Marna with 14 year old Wesley. I am at s Hopkins. I just

> > found out that an MRCP was read wrong in April 2006. ( It said

> > Normal....which I told the gastro that did not sound write and he blew it

> > off ,,,did a punch biopsy that showed 3rd stage with beading ) No jaundice,

> > no itching, Hemoglobin 12.6.

> > > >

> > > > Sept 24, 2008 Wesley was looking gaunt and had a hemoglobin of 10.2 and

> > low white count. and low RBC

> > > >

> > > > Now 2/27/09 he looks really bad ( gaunt )...quit growing,,,has a 8.6

> > hemoglobin and 3.7 white count,,,

> > > >

> > > > the MRCP in 2006 read moderately enlarged spleen with what looked like

> > enlarged lymph nodes.

> > > >

> > > > MY QUESTION IS SHOULDN'T THEY BE DOING SOMETHING TO LOOK AT HIS SPLEEN

> > AGAIN ? ALL THEY HAVE HIM SCHEDULED FOR ARE COLONOSCOPY, ENDOSCOPY, AND

> > LIVER BIOPSY. DON'T THEY NEED A SCAN , ULTRASOUND , MRI OR SOMETHING FIRST ?

> > > >

> > > > I AM A NURSE AND TO ME THEY ARE NOT DOING RIGHT,,,THE DOCTOR HAD A BAD

> > ATTITUDE BECAUSE I CAME FROM OUT OF STATE. SHE BASICALLY SAID GO BACK TO

> > TEXAS !

> > > >

> > > > MARNA

> > > >

> > > > MY SISTER IS AN ER NURSE AND SAID HE SHOULD HAVE POSSIBLY BEEN ADMITTED

> > AND THAT I SHOULD JUST WALK IN THE ER FOR A SECOND OPINION ?

> > > >

> > >

> >

> >

> >

>

>

>

> --

> Ian Cribb P.Eng.

> (6...

>

[Guest guest]

I always have to capitalize my name Marna....because people do read it as

Mama....I think people probably are wondering why I put MARNA...LOL....

glad you caught that Ian

> > > >

> > > > This is Marna with 14 year old Wesley. I am at s Hopkins. I just

> > found out that an MRCP was read wrong in April 2006. ( It said

> > Normal....which I told the gastro that did not sound write and he blew it

> > off ,,,did a punch biopsy that showed 3rd stage with beading ) No jaundice,

> > no itching, Hemoglobin 12.6.

> > > >

> > > > Sept 24, 2008 Wesley was looking gaunt and had a hemoglobin of 10.2 and

> > low white count. and low RBC

> > > >

> > > > Now 2/27/09 he looks really bad ( gaunt )...quit growing,,,has a 8.6

> > hemoglobin and 3.7 white count,,,

> > > >

> > > > the MRCP in 2006 read moderately enlarged spleen with what looked like

> > enlarged lymph nodes.

> > > >

> > > > MY QUESTION IS SHOULDN'T THEY BE DOING SOMETHING TO LOOK AT HIS SPLEEN

> > AGAIN ? ALL THEY HAVE HIM SCHEDULED FOR ARE COLONOSCOPY, ENDOSCOPY, AND

> > LIVER BIOPSY. DON'T THEY NEED A SCAN , ULTRASOUND , MRI OR SOMETHING FIRST ?

> > > >

> > > > I AM A NURSE AND TO ME THEY ARE NOT DOING RIGHT,,,THE DOCTOR HAD A BAD

> > ATTITUDE BECAUSE I CAME FROM OUT OF STATE. SHE BASICALLY SAID GO BACK TO

> > TEXAS !

> > > >

> > > > MARNA

> > > >

> > > > MY SISTER IS AN ER NURSE AND SAID HE SHOULD HAVE POSSIBLY BEEN ADMITTED

> > AND THAT I SHOULD JUST WALK IN THE ER FOR A SECOND OPINION ?

> > > >

> > >

> >

> >

> >

>

>

>

> --

> Ian Cribb P.Eng.

> (6...

>

[Guest guest]

Barby,

The HIPAA regulations give patients a

mechanism to request an amendment to their medical record. Each

healthcare facility must have their privacy notice on their web site and have

an internal procedure for requesting an amendment to your record. I would

put the request in writing and send it to the Director of Health Information at

the facility where the specimen was obtained. The Department of Civil

Rights is the regulatory agency for the HIPAA Act. If you do not get a

satisfactory response from the healthcare facility, I would contact them.

I was a HIPAA Privacy Officer for awhile

and learned to 400+ page regulation. It is really applicable

here. Most organizations will put a HIPAA complaint at a high

priority, because it can result in bad press.

Good luck on getting it amended.

From:

[mailto: ] On Behalf Of Barby

Sent: Saturday, March 14, 2009

2:17 PM

To:

Subject: Help

anybody that reads this

MARNA,

I experienced this to the end which

includes a path report coming back after my tx that says I had

PBC. I think you can imagine my reaction. I don't

think so... After 12 years of ERCP's and docs telling me my

ducts are beading and closing up and yes you have psc the pathologist has the

audacity to put pbc on the report. I wonder if they even looked at the

specimen. In addition to that they said they received a gall bladder

specimen which isn't possible since it was removed in 1995 when my psc was

discovered. Makes me wonder about the doctors who work in the

lab. In addition to them saying I had pbc it was

reported to UNOS registry that way. I have asked them to change it but

we are at a stand off right now because the nurse says it has to be reported

according to the path report at tx. I will continue to fight to

get this corrected. I really don't care if it messes up some of their

stats. I'm sounding a bit feisty and about this issue I

am.

Blessings,

Barby