checking in ... help with GI's requested

[Guest guest]

Hi all,

It has been a long time since I've posted to the group. Things have

been overwhelming for me in the last year. I apologize for not being

more of a group member, but I've been going through a lot and I have

needed to do it privately. I am coming out of hiding to say hello,

to let you all know that I've missed your powerful words of support,

and I do have a request for help.

For the past year, I've been having varicial bleeds due to the clot

in my portal vein. The clot formed after my living donor liver

transplant two and a half years ago. We have done so many tests and

the docs cannot find the varicies that have been bleeding this last

month. The tests have included push enteroscopies (a longer,

specialized EGD), colonoscopies and a pill cam. We also did a

bleeding test on Friday when it still appeared that I was bleeding.

Unfortunately, the blood I was seeing must have been old - because

the test didn't pick up any bleeding. Obviously, I'm very

frustrated. I need answers. I'm getting sicker by the day. I'm so

anemic that my mouth tastes like metal. My H & H before release was 24

and 8. (I've gotten blood when I was that low before, but now

they're not offering it.)

So, where are the best GI's in the country? I need the absolute

best - people who have experience with tracking down hard to find

bleeds and who also understand the special needs of a transplant

patient with multiple issues. (I also want them to have a good

Interventional Radiology team that they work well with since IR can

be so important in treating this.) Also, I need them to have a good

group of surgeons who could treat this surgically, if necessary. (My

current hospital tells me I'm not a candidate for TIPS.)

I appreciate any help you all can give. I will travel anywhere in the

country for help. I'm considering the Mayo Clinic since it gets such

good press on this group...Thoughts? I'm absolutely desperate for

answers.

I wish you all the best-

Deb in VA

PSC 1998, gallbladder removed 1998, UC 1999, Listed Ltx 2001, LDLTX

5/19/2005, 3 liver biopsies summer 2005, Summer 2005 PVT - only a

small part of my portal vein is open, 13 PTCs w/ bile drains 2005-

2006, 3 sinus surgeries 2006, multiple MRIs, colonoscopies,

endoscopies, and various other tests since.

[Guest guest]

Dear Deb;

It's great to hear from you, but very sad to hear that you are

struggling so much with this obscure bleeding problem and anemia. My

heart goes out to you.

Doing a quick search for obscure gastrointestinal bleeding, and

filtering out results only for those in North America, I came across

this recent article, from Case Western, Cleveland OH, where they are

using multidetector CT angiography to detect obscure gastrointestinal

bleeding. They also mention the need for a " multispecialty approach

involving gastroenterologists, surgeons, internists, emergency

physicians, and radiologists " in evaluation and treatment:

Radiographics 27: 1055-1070 (2007)

Acute gastrointestinal bleeding: emerging role of multidetector CT

angiography and review of current imaging techniques.

Laing CJ, Tobias T, Rosenblum DI, Banker WL, Tseng L, Tamarkin SW

Department of Radiology, MetroHealth Medical Center, Case Western

Reserve University, 2500 MetroHealth Dr, Cleveland, OH 44109, USA.

utmaddoc@...

Acute gastrointestinal bleeding is a common cause of hospitalization,

morbidity, and mortality in the United States. The evaluation and

treatment of acute gastrointestinal bleeding are complex and often

require a multispecialty approach involving gastroenterologists,

surgeons, internists, emergency physicians, and radiologists. The

multitude of pathologic processes that can result in gastrointestinal

bleeding, the length of the gastrointestinal tract, and the often

intermittent nature of gastrointestinal bleeding further complicate

patient evaluation. In addition, there are multiple imaging

modalities and therapeutic interventions that are currently being

used in the evaluation and treatment of acute gastrointestinal

hemorrhage, each with its own strengths and weaknesses. Initial

experience indicates that multidetector computed tomographic

angiography is a promising first-line modality for the time-

efficient, sensitive, and accurate diagnosis or exclusion of active

gastrointestinal hemorrhage and may have a profound impact on the

evaluation and subsequent treatment of patients who present with

acute gastrointestinal bleeding. PMID: 17620467.

They have a Vascular and Interventional Radiology (VIR) department:

http://www.metrohealth.org/body.cfm?id=2305 & oTopID=2305

and this was something that you specified.

Dr. Tamarkin might be a good person to contact first?

W. Tamarkin, M.D.

Interim Chairperson, Department of Radiology

Chief, Body Imaging

Assistant Professor, Case Western Reserve University

Specialty: Ultrasound

Computed Tomography

Areas of Interest: Body and Thoracic Imaging

Certification: American Board of Radiology

MetroHealth Appointment: 1994

Location Division Appointment

MetroHealth Medical Center Radiology

Medical School: Medical College of Ohio, Toledo, Ohio

Internship: University Hospitals of Cleveland, Cleveland, Ohio

Residency: University Hospitals of Cleveland, Cleveland, Ohio

Fellowship: University Hospitals of Cleveland, Cleveland, Ohio

The radiology department website at Case Western:

http://www.metrohealth.org/body.cfm?id=624 & oTopID=624

links to:

http://www.radiologyinfo.org/index.cfm?bhcp=1

where you can get information on diagnostic radiology and

interventional radiology. CT angiography is described here:

http://www.radiologyinfo.org/en/info.cfm?PG=angioct

I hope that this helps, and that this is not reiterating something

that you have already tried.

I hope you can get an answer and treatment soon.

Best regards,

Dave R.

[Guest guest]

Deb, It's good to hear from you. I am so sorry you are having troubles

and the ER doctor makes me furious. I know how you feel there. For

some reason they think the only people who go in there want pain

pills. For goodness sakes! 's GI would tell him to go to the ER

and I would beg him not to make us go through that. Once we got pass

the idiot doctors who quickly realized this was out of their league, we

would get stuck with an internal meds doc that would go screwing with

his medications and get him in worse shape that he went in there.

Anyway, sorry again for the bleeding. Why can't they give you some

blood? Hopefully, others will be able to recommend some good docs for

you who will be able to help you.

wife of

PSC & UC 2000 J pouch 2004 Tx 11-18-06

[Guest guest]

Hi Deb,

I am so sorry to hear what you are going through. I thought since we hadn't

heard from you, that all was going great.

The approach at Case Western that Dave sent sounds like just what you are

looking for. My only question would be is - are they familiar with liver

transplant. I am not sure if they are a center. If they are...that sounds like

exactly what you are looking for. I just got back from Mayo with Todd. I think

that would also be a GREAT place for you to go. After a call from Todd's doctor

we were able to get in within a couple of days. I think you will be amazed in

the Mayo Clinic...there truly is nothing else like it. I hope you are able to

get some answers and quickly get fixed. so you can get back to enjoying life.

Joanne (mom of Todd)

Sent from my Verizon Wireless BlackBerry

[Guest guest]

Deb,I am so sorry to hear this news and I wish you godspeed to a place that can help you.Like others here, I am a Mayo fan and would not hesitate to go there. I hope you hear from some ofthe others who have had problems more like yours for their input.Please keep the faith that there is help around the corner.I'll be thinking of you.LeeHi all,It has been a long time since I've posted to the group. Things have been overwhelming for me in the last year. I apologize for not being more of a group member, but I've been going through a lot and I have needed to do it privately. I am coming out of hiding to say hello, to let you all know that I've missed your powerful words of support, and I do have a request for help.

[Guest guest]

checking in ... help with GI's requested

IDeb, I can't help with the information you really need now but please know that we will keep ou in our thoughts and prayers and be here whenever you need us.

Bettyann (SC)

[Guest guest]

Hi Deb,

I’m so sorry to hear of your decline. I know we were all so happy when you went

back to work. It seemed like all of your

troubles were finally behind you.

Has anyone suggested an Endoscopic Ultra Sound? When doctors found a “mass” in Ken’s

chest, they first did all the usual tests (CT, MRI’s etc.) After dxing him with several nasty diseases,

they decided to do a biopsy. One doctor

said he wanted to be “sure” of what they were looking for before biopsy. So they sent Ken to Baylor for an EUS. The doctor

doing the procedure has to be very experienced and Baylor only had one that

was. But he found that Ken’s mass

was varices wrapped around Ken’s aorta (when all other tests didn’t

point to varices.) He also “saw”

all the other varices – everywhere.

Seems to me this might be the easiest, fastest way to take a look. They now have a smaller model they use called a

Mini-probe. I found the 2 studies below.

Ken is on his way …. just a

couple of months out from his PVT and his H & H numbers are already coming back

low. Have they listed you yet? I know no one wants to be re-listed, but it

is a cure for the PVT.

Hope these help…...

Endoscopic ultrasonography (EUS) represents a major advance in

endoscopic imaging. The usefulness and effectiveness

of EUS have been established during the past few years. However,

endosonography using dedicated echoendoscopes (7.5/12 MHz) has some serious

drawbacks, as follows: 1) Combining endoscopy and ultrasonography in one

instrument increases the diameter of such echoendoscopes (12-13 mm); 2) Because

of the large diameter, complete passage of severe strictures is often not

possible and, for examination of the pancreatobiliary duct system, is not

feasible at all; 3) Image quality and resolution for small lesions is not

always satisfactory; and 4) Conventional endosonography requires a second

examination separate from the previous routine endoscopy. Recently developed

ultrasonographic miniprobes (diameters about 2 mm; frequencies 12-20 MHz) can

be passed through the working channel of standard endoscopes to provide high

frequency ultrasound images. These miniprobes might

overcome some of the above-mentioned drawbacks and contribute to patients'

security and convenience. Moreover, in various

diseases of the GI tract and the pancreatobiliary duct system, diagnostic

accuracy of miniprobe ultrasonography has been shown to be even superior to

that of EUS. In summary, miniprobe ultrasonography

seems to be a promising tool in the armamentarium of gastroenterological

diagnostics. PMID: 10710047

Miniprobe sonography was found to be significantly superior to

conventional macroscopic diagnosis in both the detection of fundic varices and

the evaluation of the efficacy of endoscopic therapy. Moreover,

MPS could play an important role in follow up and in evaluation of the need for

further treatment. Therefore, MPS appears to be a safe

and very useful clinical technique in evaluating patients with portal

hypertension with respect to the detection of fundic varices and may help in

selecting patients for appropriate therapy.

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

Son Ken (33) UC 91 - PSC 99 - Tx 6/21 & 6/30/07 @ Baylor in Dallas

[Guest guest]

We've never " met " before but I want to say hi and that I'm sorry you

are going through this. A friend of mine was having problems with PV

hypertension (not sure why but not PSC related) and kept having

bleeding varicies. He went to a lot of different docs and I told him

to go the my hepadoc's office in Omaha. They called up there and saw

one of the GI specialists. He had several endoscopies and other stuff

(don't know the details). BUT he went from being very very ill to

being just fine and in a stable condition.

I don't know how far you are from Omaha nebraska but they also have a

good transplant team so I'm sure they'd be able to help you. The

number to the switchboard is you just ask them for the GI

department if you want to talk to someone. It's the University of

Nebraska Medical Center

PSC 8/07

PBC 10/06

[Guest guest]

Dear ,

Thank you so much for the research. I feel so much better having

resources! I've been so busy the last few days that I haven't been

back online. It is so hard to work a full time job, be a single mom,

and be in the hospital as often as I have been. I'm going to look

through all of the posts and go from there. I'll keep you all posted

on how things turn out. Working up the energy for this second opinion

is a chore all its own, but something I know I have to do...

Thanks again to this amazing group!!

Deb in VA

[Guest guest]

Dear Barb,

Glad to hear that Ken is stabilizing. I'm not relisted. My MELD is non-

existent, so listing me isn't going to help at this point. Eventually

would get to that point, but not now...Thanks for your information,

too. I will definitely ask about that at my follow-up appointment on

Wednesday and when I go for a second opinion.

Take care,

Deb in VA

[Guest guest]

Deb -

My thoughts are with you. I can't even imagine working full time, with a small child, plus feeling lousy and having multiple medical issues to deal with. I wish there was something I could offer to do from 3,000 miles away - but truly know that what you are doing each day is astounding.

Take care. Hope this week is good and that you find time and energy to make plans for your medical needs,which often needs to be placed absolutely first on the important list - taking care of you, allows you to take care of everyone else and do everything else. My theory is that putting you #1 makes everything else possible and is in no way selfish. Sorry, now I'll get off that soapbox, which of course no one asked for!

Joanne H

(, Ca., mom of , 17, UC/PSC 2-06; JRA 1998)

-----Original Message-----From: [mailto: ]On Behalf Of Deb in VASent: Sunday, October 28, 2007 8:53 AMTo: Subject: Re: checking in ... help with GI's requested

Dear ,Thank you so much for the research. I feel so much better having resources! I've been so busy the last few days that I haven't been back online. It is so hard to work a full time job, be a single mom, and be in the hospital as often as I have been. I'm going to look through all of the posts and go from there. I'll keep you all posted on how things turn out. Working up the energy for this second opinion is a chore all its own, but something I know I have to do...Thanks again to this amazing group!!Deb in VA

[Guest guest]

Dear Deb;

I saw a couple of papers in the latest issue of Gastroenterology

(volume 133, Issue 5, November 2007) that might be of interest to you

in terms of tracking down obscure gastrointestinal bleeding. The papers

are " free " at:

http://journals.elsevierhealth.com/periodicals/ygast/current

Look under " AGA Institute " for:

American Gastroenterological Association (AGA) Institute Medical

Position Statement on Obscure Gastrointestinal Bleeding

Gottumukkala S. Raju, Gerson, Ananya Das, Blair

pages 1694-1696.

American Gastroenterological Association (AGA) Institute Technical

Review on Obscure Gastrointestinal Bleeding

Gottumukkala S. Raju, Gerson, Ananya Das, Blair

pages 1697-1717.

The authors are from:

a Department of Medicine, University of Texas Medical Branch,

Galveston, Galveston, Texas

b Department of Medicine, Stanford University, Stanford, California

c Department of Medicine, Mayo Clinic, sdale, sdale, Arizona

d Department of Medicine, Mount Sinai School of Medicine, New York, New

York

I hope you've been able to get some assistance and are feeling better.

Best wishes,

Dave R.

>

> Dear ,

> Thank you so much for the research. I feel so much better having

> resources!