Gary,
You are really too kind. I'll try to give a brief version of my
story for those of you I don't know.
I am a 43 year old female. I live in Athens, Alabama, which is a
small town about 25 miles west of Huntsville, AL, 10 miles south of
the Tennessee state line. I live with my wonderful husband, Bud,
and my sweetie, KayDee, a miniature dachshund. Bud is my second
husband and we have been married 14 years as of June 1st. This is
the second year in row (and at least the 3rd year out of our 14
years) that I've spent our anniversary in the hospital! However,
Bud is about as close to a saint as guy can be and I could never
have survived the health issues life has handed me if not for him.
Bud and I each one daughter and they are both in college and no
longer living at home. My daughter, Nikki, is 22. She just got
married to her fiance of 2 1/2 years, Jonathan, on May 29th. After
a week honeymoon in Cancun, Mexico, they are now back in Montevallo,
AL (130 miles south of Athens), where they are both students at the
University of Montevallo. Nikki got her B.A. in English in May, but
is continuing on for a masters in education, which she'll have next
May. Jonathan will graduate with a degree in accounting in December
of this year. They plan to live in the Huntsville/Athens area after
they finish college. Bud's daughter/my stepdaughter, Rachel, is 20
years old. She lives in Florence, Alabama, which is about 40 miles
west of Athens. She is a student at the University of North
Alabama. Rachel's boyfriend of three years, Luke, asked her to
marry him and gave her a gorgeous diamond ring on May 29th, only
minutes before the start of Nikki and Jonathan's wedding ceremony!
Soooo, May 29, 2004 will always be a very special day for both of
our daughters, and we really could not be happier. However, I did
tell Rachel and Luke that I need at least a year to recover before
we have another wedding! They haven't set a date yet, but Luke said
it'll probably be about 2 years. Nikki's wedding was quite large
and members who've been in the group know all about it. We had
sooooo many glitches and boy, did we learn a lot. However, the
wedding ceremony was by far the most beautiful I've ever witnessed!
Our minister's words, sermon, reading of the scripture, and even the
vows were soooo incredibly touching and meaningful. Of course,
Nikki was the most beautiful bride. She had the most beautiful maid
of honor (Rachel), maiden of honor (Tori - Nikki's 14 year old sis
by her dad and stepmother), and 2 very close friends as
bridesmaids. The groom was a real hunk and the best man and
groomsmen were not hard on the eyes, either. The flower girl was my
adorable niece, Kaitlyn - 6, and the ring bearer was my nephew,
Michael - 8. Despite the fact that the ceremony was rather long,
the two little ones were remarkable. In the rehearsal the night
before the wedding, they practically ran down the aisle. I knew
they could do better so I promised them $5 if they would slow down
and do their best at the wedding! Amazing what a little bribe can
do! My other nephew, John Cameron - 12, was one of the ushers and
he was perfect, also. I gave each of the kids $20 for their hard
work. The wedding day was a very long day and the kids were so good
all day long. They had to be at the church at 3:30 p.m. and the
reception didn't end til midnight!
Despite the many glitches and lessons learned, which I am not going
to go into because I have promised myself I'm only going to remember
the good things about the wedding and reception, Nikki and Jonathan
left the reception very happy and married. They had a wonderful
week long honeymoon in Cancun and returned home safely. I must say
that it was a lot of fun, a lot of very hard work, and a lot of
lessons learned. We are all glad that it is over and looking
forward to getting the lovely pics and video.
Thankfully, Rachel and Luke want a fairly simple and inexpensive
wedding, so their wedding will be much easier to handle! Unlike
Nikki and Jonathan, Rachel and Luke will only have the money Bud and
I promised both girls for their weddings, so their wedding will have
to be simpler out of sheer necessity. I'm sure it will still be
beautiful, though. Even though Nikki and Rachel are very close,
they are both very different. Nikki is lucky to have two parents
who contribute to her college expenses and also to her wedding
cost. Also, she and Jonathan began a joint savings account within
days of their engagement in order to contribute to the cost of their
wedding. So, they had a significantly larger budget to work with
than Rachel and Luke will have.
Well, so much for short! Those of you who know me, know that short
messages are impossible for me!
Okay, back to my health story. I was diagnosed with systemic lupus
in Oct 1996. I had my first documented attack of acute pancreatitis
in Jan 2000. However, I think I had attacks before that one, but
just attributed them to may gallbladder. My gallbladder finally got
bad enough to show up on tests. The ultrasound showed stones and
sludge and the hida scan showed my gallbladder only functioned at
13%. It was removed on June 1st, which was our 8th wedding
anniversary. Back to the panc. 2000 was a rough year. I was in
and out of the hospital. I had 3 ERCPs with a sphincterotomy done
in the first two. The first ERCP revealed 'sludge' in the common
bile duct. My 3rd ERCP in 2000 was done by a new GI. He told me I
had 'gastric bile reflux' and that was the cause of my pain. He put
me on several stomach meds and assured me I'd never have another
panc attack. He told me if the meds didn't work for the gastric
bile reflux, I could have a gastric bypass which would prevent the
bile from splashing back into my stomach and destroying the stomach
wall lining. I applied for a disability retirement in Dec 2000.
However, my health turned around in March 2001 and only days before
I received my disability approval letter, I decided that I would
turn down the disability and continue working. I assumed my GI was
right and the meds were working and all was well.
For the most part things went well for most of 2001. However,
around October 2001, that 'naggy' pain under my right rib began
getting worse again. I researched the gastric bypass and found that
not only would it 'cure' the gastric bile reflux, it was also
the 'gold standard' in weight loss surgery. Considering that I
weighed 260, which was around 90 lbs overweight for my 5'9" height,
the decision to have a roux-en-y gastric bypass (weight loss
surgery) was really pretty easy. I saw it as a 'two for one' deal!
I'd get rid of the gastric bile reflux and the three stomach meds I
took for it daily and I'd get my excess weight off for good! I had
the gastric bypass in Dec 2001 and I would have again 10 times
over. I had no problems or complications from the surgery and I
will forever believe that if I were still at 260 lbs, my health
problems would be worse. I lost down to 155 lbs, but that was when
I was very sick. My weight now stays around 165-169 lbs except when
my liver decides to not function as well as it should and my body
loads up on fluid - sometimes as much as 10-12 lbs in a two day
period, despite being on 80 mg of lasix and 5 mg of amiloride hcl
daily!
Things went fairly well for several months, although I continued to
have some of the pain that sure felt like a panc attack. The
episodes I was having caused pain that was way beyond the 'naggy'
level! I was having short episodes of pain that was a definite 10,
but it only lasted about 20 minutes or so and was not accompanied by
vomiting. The pain sure felt the same as the pain I'd had with the
acute pancreatitis attacks in 2000 and also the same as the attack
of pain I'd had in Oct 2001 (two months prior to the gastric
bypass). However, my GI did an endoscopy in March 2002 and told me
my new 'small' stomach looked beautiful and there was no inflamation
or gastric bile reflux. He did an MRCP in April 2002 and told me my
panc was perfectly healthy and the attacks of 2000 were a fluke and
I'd never have another attack. I did have a couple of months after
April 2002 with little or no pain, so I decided that the GI must
have been right and I decided that maybe the 'naggy' pain under my
right rib must have just been delayed healing from the gastric
bypass.
Never only lasted 2 months! I was in Virginia on one of my many
business trips when I was hit with the familar pain. This time it
didn't stop. I had a co-worker take me to the ER and was shortly
admitted to the hospital with acute panc. My family was having a
stroke because I was about 500 miles from home. My hubby managed to
fly to VA and it was a darn good thing. It's amazing how much
better you can think you are when all you are doing is lying in a
hospital bed and getting lots of drugs to ease the pain and nausea.
I could never have managed to even get my luggage to the check in
counter to fly home because I was so weak. I was only home for 3
days when I ended up in the hospital with an even worse attack. I
think I was in the hospital about 15 times from July 2002 to
December 2002. The GI did 3 ERCPs between Aug and Dec 02. Because
of the gastric bypass, my intestines have been re-routed. He was
only able to get to the very end of my common bile duct and could
not get to the panc at all. the first ERCP, he just looked. the
second one, he put a stent in the bile duct, and the third he
removed the stent because it didn't seem to help. Each ERCP
resulted in about 12 hours of puking my guts out and many days of
increased pain. As far as I'm concerned, I have had my LAST ERCP!
My GI finally did a liver biopsy in Dec 2002, only 4 months after my
internal med doc began insisting I needed a liver biopsy because my
liver enzymes were 'all over the place' ranging from normal once or
twice to almost 800 (normal is less than about 35). My 'perfectly
healthy' liver revealed that I have autoimmune liver disease -
specifically autoimmune hepatitis (AIH). For those of you who
haven't heard of AIH and most probably haven't because the odds of
having it are only about 1 in 150,000, AIH is caused by my immune
system seeing my liver as foreign and attacking it. Unlike
Hepatitis C, it is not 'caught', nor is it contagious. Well, I
guess you could say I 'caught' it from one of my parents. My sis
and I found out recently that we got a gene from each of our parents
that can cause autoimmune diseases! Strange when you consider that
neither our mom or dad have any autoimmune diseases that we know
of! Anyway, the liver biopsy revealed definite AIH and stage 3
fibrosis. Liver damage is graded on a scale of 0 to 4, with 4 being
cirrhosis. So, my 'perfectly healthy' liver was well on the way to
cirrhosis and a liver transplant! Can you tell I'm a just a little
miffed at my previous GI?
Well, then the GI began insisting that all of my pain and attacks of
acute pancreatitis, which he was calling 'recurrent acute
pancreatitis' were actually caused by the liver disease and as soon
as we got the liver disease under control with prednisone and imuran
(an immunosuppresant), I'd no longer have any pain, nausea, or
vomiting. Never mind that with many of my attacks, my amylase and
lipase were elevated and I presented with pretty classic symptoms of
acute pancreatitis. Luckily, my liver has responded well to the
prednisone and imuran. I'm down to just a very low dose of
prednisone daily and imuran and other than when I have a panc flare
up, my liver enzymes remain in the normal range.
Out of frustration over the continued episodes of pain, nausea, and
vomiting, which my GI kept insisting were caused by the AIH, I went
to Vanderbilt University Medical Center in Nashville, TN to see a
hepatologist. He confirmed the diagnosis of AIH after reviewing the
biopsy slides, but wasn't interested in even discussing my panc
problems. He was strictly a 'liver' man! He did send a letter to
my GI and my family doc saying that the AIH appeared to be pretty
well under control and my continued episodes of pain, nausea, and
vomiting were most likely caused by either a pancreas or biliary
tree problem.
Oh, I left out the fact that in Oct 2002, I began having problems
with my blood sugar. First, it just went very low if I went longer
than 2 hours without eating. However, by the end of December, I
began having problems with it going both high and low. When it went
up to around 250 the end of December, I asked my family doc to send
me to an endocrinologist. I was told I had type II diabetes on Jan
17, 2002, only 11 days after being told I had AIH. The endo told me
I was doing all the right things. I had talked to a nutritionist
shortly after the blood sugar problems began and was already
following a diabetic diet. The endo said for me to continue doing
what I was doing because he really didn't want me on any oral meds
for diabetes as they are all hard on the liver. So far, I've
managed to do without meds for diabetes except when I'm in the
hospital with an acute panc attack. I always end up having to be
given insulin once or twice when I have a panc attack.
I also left out the fact that between July 2002 and January 2003,
three different surgeons insisted that I did indeed have chronic
pancreatis, which would explain my developing type II diabetes AFTER
I was no longer at all overweight!
After seeing the hepatologist at Vandy, my family doc discussed my
case with my GI. My GI then told my family doc, that 'yes, he did
think that I had probably had something going on with my bilary tree
in addition to the liver disease'. He said that whatever the
problem was, it was caused by the gastric bypass and I simply needed
to have surgery to reverse the gastric bypass! I told my family doc
that was a load of crap considering the pain was exactly the same as
the pain I'd had during most of 2000 and I reminded my family doc
that I'd seen him after a pretty bad attack in Oct 2001 (two months
prior to the gastric bypass). I was furious that I had wasted so
much time with my GI and decided right then that I would never be
seeing him again.
I intended to get my wonderful internal med doc to refer me to a GI
when I saw him next. Oh, in the meantime, my mother, hubby, and I
looked over my labs. There was a clear pattern of my liver enzymes
elevating every time I went to the ER with what felt like a panc
attack to me. My amylase was normal, though, so the ER docs kept
insisting the problem couldn't be my panc. My local hospital never
bothers to check the lipase because they can't do it in house.
However, my internal med doc is in Huntsville (about 30 miles from
where I live). Sometimes I'd go to the hospital in Huntsville
nearest his office, Crestwood, because I got so much better
treatment there. In looking over my labs, we realized that my
lipase was slightly elevated on the occasions that my liver enzymes
were elevated. I decided that very day that with any future
attacks, I'd let my mom take me to Crestwood, as she'd been begging
me to do. I hated doing that because most of my attacks occurred at
night and the local hospital was only 5 minutes from my house.
Well, low and behold, I had a major attack that very night. Sure
enough, my theory proved true. this time my liver enzymes were back
up around 500 or so and my lipase was definitely elevated. My
amylase was dead center normal and has been every time it's been
checked since then. This was the end of May 2003. I was admitted
with a definite diagnosis of acute pancreatitis. My internal med
doc was not happy to find out that the docs at my local hospital
never bothered to check my lipase, since lipase is actually much
more specific for pancreatitis than amylase is. I spent 4 days in
the hospital and begged my doc to let me out. I was out 36 hours
and back in with an even worse attack. I was admitted again and my
internal med doc called in a new GI who specializes in both liver
and pancreas problems. My panc problems had finally progressed to
the point of showing a little damage on a ct scan. The new
GI/hepatologist told me that I definitely had chronic pancreatitis
in addition to the AIH. Finally, it all made sense! He felt that
one of the main causes of the panc flareups was that my bile didn't
flow well. He put me on actigall to thin the bile and panc enzymes.
Despite the fact that I still have pain on a daily basis and am
hospitalized pretty often, overall I have been much better since
going under the care of my current GI. I am under the care of a
pain management doc, also. I've had four celiac plexus blocks and I
do think they've helped. I also think that having med for pain and
nausea has helped my quality of life tremendously!
My rheumatologist decided she is not willing to just accept that I
have chronic pancreatitis and that I will have these attacks for the
rest of my life and have to go to the ER and/or be hospitalized
several times a year. So, she has referred me to the Mayo Clinic in
Rochester, MN. I discussed with my internal med doc and GI whether
it would be of value for me to go there. they both agreed that if I
could handle the trip, it certainly wouldn't hurt to have a fresh
team of doctors look at my case. According to my GI doc, I am
his 'most unusual and complex' patient! Kind of sad when you know
that he specializes in liver and pancreas problems! Oh, just to
make things even more fun, I have an autoimmune clotting disorder
called the antiphospholipid syndrome. this leads to an increased
risk of blood clots, strokes, heart disease, and miscarriage. I
have been on coumadin for this since Sep 2003. Thank goodness for
the coumadin. I had a definite TIA (mini stroke) in March 2003,
which I will always believe would have been a full blown stroke if I
had not been on the coumadin. My sis and my 22 year old daughter
also have the same clotting disorder. they are currently on aspirin
since their numbers aren't as bad as mine, yet. It's really a
blessing that we were all tested and found out we have the clotting
disorder PRIOR to having any of the problems it can cause!
I also found out around Feb 2004 that I have the same genetic IgG
deficiency that my sister has! We didn't know it, but IgG
deficiencies are very closely linked to autoimmune diseases.
According to the hematologist, my sis and I have no antibodies to
fight off sinus or upper respiratory infections. My sis has to get
monthly IgG supplements via IV, but so far it seems I don't get
infections like she does so we haven't added the IgG supplements to
my list of about 25 medications!
Okay - this has got to be the longest 'short' intro ever!
Karen W
Alabama