Hi Wes,
I am so sorry that you are depressed. It isn't surprising, though, with all
you have been through and continue to go through. I wish there was something
I could do to help. Just know that I am here thinking and praying for you. I
am so frustrated with the egos of some doctors, that I rarely see any of
them now. I muddle through on my own and monitor my monthly blood work for
major problems. It should never be that way, but sometimes the stress of
dealing with the medical community is a worse option. Take care and know
that we are here anytime you need to talk.
BJ-Sk. Canada

( ( ( Wes ) ) )
Perhaps you could nip that one in the bud, and give him the name of the doctor to whom
you want the report sent to (even if it's a lie). It would keep the specialist happy and
the reports would all go to the same place?
J

One of the reaons I posted that was because of the commalities of pancreatitis.
The other was noting that stem cell transplant seems to have cured one person of
everything, but I don't know if your kidney or you could survive stem cell transplant,
which would mean you'd have to be in hopsital on a kidney machine?
J

Wes, getting good health care is exhausting, frustrating and
depressing.  Unfortunately you do have to fight for yourself.  Having
belonged to an HMO and now Blue Cross, I have to say that being able
to self-refer is a HUGE advantage.  It's even more frustrating to have
a PCP who is being paid by the insurance company NOT to refer you to a
specialist (HMO).  Do you have a good PCP?  I find it helpful to have
one doctor who looks at the big picture - and my rheumy wants me to
keep following up with her, too - even though he handles almost all of
my meds.

Don't give up!  There are lots of people who care about what happens
to you.

Gretchen

a
nurse calls from time to time to track my progress.  She called last
friday, and I broke down while on the phone. I'm worn out by the

Oh Wesley! {{{}}}

THIS is what a support group is for! YOU have just helped me by sharing your
frustration!

Suffering from lupus can sure be not only incredibly frustrating but I've
found it to be incredibly lonely! People just don't understand.

I moved clear across the country to be near my family because of this
illness and what it does to me. I have asked them for help and well, don't!
They just don't *get it*!

Recently while at my parent's house, I came down with a lupus headache.
Sitting with my head cradled in my arms, my mom asked me if I wanted an
Excedrin. I snapped at her, which I feel badly about. "EXCEDRIN?! HOW ABOUT
A PISTOL?!" Not nice.

Too, I called her for help with my little kids a few weeks ago. I was so
tired, it was all I could do to call her and picking my 6 yr old twins up
from school was unthinkable. She asked me out to lunch. <sigh!> I almost
responded, "What part of 'I can't lift my head off the pillow' don't you
understand?" And I literally could not.

If it is any consolation to you, I too get feelings of helplessness and
hopelessness with this illness!

People used to describe me as "vivacious" and now I'm happy if I'm able to
maintain "normal" hours, pain not withstanding.

Recently too, I went through boxes and boxes of old photos and I was almost
brought to tears at the reactions of some newer friends at how I used to
look. I'm thirty-twelve and believe I look much older - and I DO look unwell
all of the time, whereas 10 years ago I looked pretty darn good, now that my
neighbors have not so delicately mentioned it! (Will someone please provide
the link to the photo pages for this group again? I would love to see some
of you!)

Wesley, remind yourself that it has been said that a patient will diagnose
him/herself: If a doctor listens, REALLY listens to a patient, that patient
will tell the doctor what is wrong with them.

You're right about the healthcare in the U.S.. I LOVE the whole concept of
homeopathy, which makes absolute sense, but requires a doctor to LISTEN.
Routinely practiced in nearly every country but the United States, here
doctors are programmed (as are patients) to have the doctor tell US what is
wrong with us. Of course it's wonderful to have a "name" or a "label" to
what we're experiencing (and for some, particularly with illnesses such as
our lupus it can even be a relief), but we must remind ourselves that for
the most part, we know what is bothering us. We know what hurts. We don't
need to be told. We are seeking treatments/relief/remedies/cures.

I fired a rheumy once for being disrespectful. I was a new patient and was
very pleased that my labs came back looking relatively good. My ANA was
negative! (But only for that appointment, unfortunately.The lab report may
have been wrong.) Based solely upon the ANA He told me that I didn't need to
see him, rather I needed to see a psychiatrist and he inferred that I had a
"drug problem" because I asked him for vicodin. Just thinking about him
makes my blood boil! I would love to know where to report that sucker, but
somehow doubt that he'll even receive a hand slap. (I met someone else with
lupus who informed me that "everyone" in her support group had fired him
because he's so mean, uncaring and rude.)

Oh dear! Now I'm using this reply to vent! I AM sorry, but again, this
illness is SO LONELY! It is a problem at times when people cannot see our
handicaps, much like my son who has autism. People just don't understand
what we're dealing with. INCLUDING doctors!
I think my sisters may be avoiding me (or perhaps I'm overly sensitive),
because I'm a "downer". I have tried to describe how I feel and fear people
think of me as a "whiner" or as a "complainer". Again, they can't see
fatigue, nor headaches, nor joint pain. I asked one if she were avoiding me
and she said that she wasn't, explaining that she didn't invite me to lunch,
shopping, etc as I'd always told her that I couldn't. It still hurts. And
then it hurts even more remembering how I used to be. "Vivacious".

And then comes the guilt. For me it is my children. I'd wanted children all
my life. I yearned for them. Truly ached. I battled infertility for 14 years
and all of the dehumanizing testing and procedures that goes along with it
(mild, undiagnosed lupus = infertility perhaps?). I even went so far as to
becoming a social worker to high-risk families and burning out, got my
teaching credentials and taught. These occupations weren't careers which I
"had on my heart", rather they were substitutions for not being able to
parent, which was.

Finally I did get pregnant a few times medically assisted with meds and
artificial insemination and each of those pregnancies were ectopic. And
there were the three adoptions which fell through... All SO heartbreaking!
"Losing" babies was worse than having no hope. ...then the bi-lateral
ectopic pregnancy which ruptured. I lost both fallopean tubes and my left
ovary. And my "babies". I thought that I'd never smile again.

As a "last chance" effort to get pregnant, I went all the way to and through
In-Vitro and it worked! I have my twins to prove it! It was and is and they
were and are walking-talking-LIVING-smiling-laughing miracles! (Butthead
left during my pregnancy, telling me that he never wanted children and that
he "went along" with "it" to placate me, although we discussed having a
family in depth prior to marrying, but that's another story.)

And a year after giving birth to the twins (it was the pregnancy from hell -
5 1/2 mos bedrest, delivery at 30 weeks, then NICU), I was so tired. And
sick. I "wrote it off" to the aforementioned. It got worse. New symptoms
arose. And I wasn't getting better. And I was diagnosed. And sometimes now I
can't even get out of bed. My kids have spent nights with my sister and her
family. Both children worry about me. They shouldn't have a care in the
world! They're little kids! I should be able to run around with them! And
when I'm sick, I feel so, so guilty. They deserve so much more than I'm able
to give them, darn it!

Octavia

Did anyone read Bert's story?  I actually just did a search & found
Bert's story & came back here & saw that it was the same website that J
had found.

Scroll down & read:  3rd story, I believe.

Bert's Story
2/15/03

www.pancassociation.org/anthology.htm

Here's the website to the  Pancreatic center of Cincinnati.  They are
performing total pancreatectomies with auto islet cell transplantation &
only one of the patients has developed brittle diabetes.  They do have
to give patients insulin for awhile, but it sounds very promising.

www.ucpancreas.org

They have a "contact us" link & although I really think this should be a
last resort treatment, Wesley, it seems to be a promising one.  Maybe if
you contacted them & explained your overall health & past medical
history, then they could advise you better.  I have searched for a
pancreatic center doing this in your state, but haven't found anything
as of yet.  I know this is in Ohio, but it's mostly for info right now.
They may start doing this elsewhere in the future.  I just hope you
won't need it.  

Maggie

Hi Wes,
I'm revisiting this pancreas divisum.
Pancreatitis can be associated with it.

http://chorus.rad.mcw.edu/doc/00303.html
21-45% get pancreatitis,

http://www.emedicine.com/radio/topic520.htm
(not supposed to copy from that web page, they warn about copyright), but they mention

Various endoscopic approaches used for the treatment of pancreas divisum with acute
recurrent pancreatitis include endoscopic sphincterotomy of the minor ampulla with or
without sphincterotomy of the major ampulla, ductal balloon dilatation, and pancreatic
duct stent placement "

Johns Hopkins - as far as I know, they are the best in the world on pancreatic issues...

(http://webapps.jhu.edu/jhuniverse/patients/ )
J
Pancreas Divisum

The most common congenital anomaly of the pancreas, pancreas divisum, occurs in
approximately 10% of the population and results from incomplete or absent fusion of the
dorsal and dorsal ducts during embryological development. In pancreas divisum, the
ventral duct of Wirsung empties into the duodenum through the major papilla, but drains
only a small portion of the pancreas (ventral portion). Other regions of the pancreas,
including the tail, body, neck, and the remainder of the head, drain secretions into the
duodenum through the minor papilla via the dorsal duct of Santorini (hence the term
dominant dorsal duct syndrome) (Figure 8). Recent clinical trials have supported the
concept that obstruction of the minor papilla may cause acute pancreatitis or chronic
pancreatitis in a subgroup of patients with pancreas divisum. Endoscopic or surgical
therapy directed to the minor papilla has been effective in treating these patients.

Transabdominal Ultrasound
Transabdominal ultrasound is a simple, noninvasive, and relatively inexpensive imaging
technique. Findings of a dilated pancreatic duct (greater than 4 mm), calcification, and
large cavities (greater than 1 cm) are associated with chronic pancreatitis. With a 70%
sensitivity and 90% specificity, a satisfactory ultrasound examination negates the need
for additional confirmatory testing.

Computed Tomography (CT)
More sensitive than transabdominal ultrasound, CT (computed tomography) scanning can
demonstrate duct dilation, cystic lesions, and calcification (Figure 12). This technique
is useful in discriminating chronic pancreatitis from pancreatic carcinoma.

Magnetic Resonance Cholangiopancreatography (MRCP)
Magnetic resonance cholangiopancreatography (MRCP) represents a major advance in the
demonstration of pancreatic ductal anatomy. MRCP yields satisfactory pancreatograms in
patients with chronic pancreatitis in whom a CT scan showed no abnormalities. No ductal
or intravenous injection of contrast medium is necessary, and the patient is not exposed
to irradiation. MRCP is derived from an enhanced MRI and may be adjusted to optimally
visualize the biliary and pancreatic ducts (Figure 13). Dynamic secretin magnetic
resonance pancreatography (DSMRP) has further advanced pancreatic visualization. DSMRP
may improve the clinician's ability to detect early chronic pancreatitis. Further
studies are needed to fully assess this novel approach.

Direct Access Endoscopy
Upper Endoscopy (EGD) indications include:
Upper abdominal distress which persists despite an appropriate trial of therapy or is
associated with anorexia and weight loss
Esophageal reflux symptoms which persist or recur despite appropriate therapy
Chronic iron deficiency anemia and the clinical situation suggesting an upper GI source
when colonoscopy is negative
An abnormal radiologic test which needs confirmation or specific histological diagnosis
(i.e. suspected neoplasm, gastric or esophageal ulcer, stricture, obstruction)

Exclusion Criteria for Direct Access Endoscopy:
Unstable patients or those with a contraindication for endoscopy such as suspected
perforation, severe or acute diverticulitis, or fulminant colitis.
Patients requiring advanced endoscopic procedures (such as therapeutic endoscopy:
laser, dilatation, ERCP, and endoscopic ultrasonography).
These patients require prior GI consultation. Please call (410) 955-4166 for further
assistance and information

How is chronic pancreatitis treated?
Treatment for chronic pancreatitis includes medical, endoscopic and surgical therapy.

Pancreatic enzyme replacement is therapy that replaces enzymes, the production of which
is reduced because of the disease process of pancreatitis. The goal of pancreatic enzyme
replacement therapy is to control diarrhea and help the patient stabilize his/her body
weight. These enzymes are critical to manage malabsorption. They are useful in
significantly improving steatorrhea (passage of fat through the stool). In addition,
pancreatic enzyme replacement therapy inhibits pancreatic secretions and may also
decrease the pressure in the ductal system (decreasing pain).

A stent, or endoprosthesis, is a hollow synthetic tube that may be inserted in a
pancreatic or biliary duct or sphincter to facilitate flow of pancreatic juice or bile.

Endoscopic sphincterotomy refers to the division of a muscle during endoscopy. This may
be used to treat disorders of the muscle or to facilitate endoscopic therapy in the
biliary and pancreatic ducts.

Surgery for chronic pancreatitis is indicated when more conservative approaches, such as
medical and endoscopic, fail to give relief from symptoms.