Finally some relief!

2009-01-08 11:22:01

Hi all! Wanted to give you an update on my incision. And I want to
apologize for not keeping up with the posts. I got pretty sick from the
incision on Saturday and the fevers really knocked me on my butt. Saturday
night I had my friend take me to the hospital. My incision was killing me.
They doped me up, took a CT Scan, and were going to send me home, but I
spiked a fever so they admitted me. My PCP got a surgeon involved that cut
my incision open, cleaned out the gunk, and took a culture. Home health is
coming once a day to hang a bag of IV antibiotics and pack and change my
incision. She didn't want me to have to stay in the hospital for that and
pain control. I was pleased! She prescribed me IV Demerol 75 mg every 2
hours and IV Phenegran 50 mg every 2 hours. Needless to say I am pretty
comfortable. I think I might be getting somewhere finally.
Jenise

Re: [ThePancreatitisPlace] arthritis/autoimmune dx?

2009-01-08 04:00:43

Shannon, I would definitely see a rheumy. My dad had was terribly sick
(they thought he had some kind of lung disease) and it turned out to be
an autoimmune illness - no one else could diagnose it.
It's a shame, but you need to be your own doctor these days!
Eileen

Sandostatin LAR

2009-01-08 00:57:57

Hey all. It's been quite some time since I last posted. My life has
been quite chaotic. My health, however, has been AWESOME! Hence,
the e-mail and the title of the e-mail. Denise e-mailed me and let
me know that Jenise and a new member, Kime, were taking and going to
be taking Sandostatin and the LAR. I have been taking LAR since
January, and this shot has been a lifesaver for me. God certainly
blessed my life and my family by placing this drug in my hands. It's
very expensive at somewhere over $2000 per shot, but somehow He made
it that I only pay $12 per month. Contrary to reports, the shot that
I take is not painful at all. We rotate each side of the buttocks
from month to month, and I have no problems with it - no after
effects, nothing! I can always tell when it's time for the shot, as
I seem to need my Ultram a little more. I went from taking seven
types of meds to only one. I also only take Ultram from time to
time, and that is a non-narcotic pain killer that allows me to
function and relieves the pain well enough for me to go on with
life. Back in November, there was no way I could have survived on
that pain med. I was having pain blocks and seriously considering
the medtronics pain pump. I am a totally different human being, and
I give God all of the glory for this!
I feel like a whole mommy, wife, employee, etc. Everything I do
seems more real. I haven't been to the ER in over six months!!!!!
That's worth everything!
I totally recommend this drug to those of you who are considering and
are capable of taking it. I understand that not everyone will
respond as I have, but it has been so good to me.
I wish both of you the best luck with this medicine. The drug began
to work almost instantly with me. So, Jenise, get ready for a new
life - expect it!!!!!
For those of you who remember me, I know I haven't been around much.
Charles' cousin/best friend was murdered a few weeks ago. He was
engaged and had two children, one and four. I haven't forgotten
anyone. We also just moved, and all of my time is just sucked up by
trying to get everything done and being an emotional support for
Charles. I hope each of you are feeling some sort of relief. For
those of you who don't know me, I am so glad you have found your home
here. This house is a blessing. It always feels good to come home,
as well!
Anyone heard from Joe and Jenn? I got an e-mail from her a little
while back. What about Mary B? Is she okay? Is Jan okay? I
haven't gotten to catch up on the posts!
I start jury duty tomorrow, so access to e-mail will, once again, be
very limited. I am thinking about everyone.
Love and God Bless,
Shelley in KY

Re: [ThePancreatitisPlace] Digest Number 316-Cecilia-Dr. Sutherland

2009-01-07 15:07:17

I am starting to wonder if this is such a great
surgery, it seems as if latley we are starting to hear
horror stories My daughter had her pancreatectomy with
Islet cell transplant last April she now has seizures
and is dibeteic and lost her right leg below the knee
all because we thought this surgery would give her a
better shot at a normal life how many of you have had
this surgery with a good outcome we did'nt go to
Minnesota either so becareful where you go. a mad
mother
Belinda in Il

Digest Number 316-Cecilia-Dr. Sutherland

2009-01-07 04:42:19

Dear Cecilia,
Hello lover-girl! Long time no chat... My bad.
Anyway, I just had to reply to your note - disturbing news, but informative,
for which I am most thankful. If you can elaborate at all, I for one would
love to hear more... It seems like this "God" has been receiving
less-than-perfect publicity of late, and not that this in particular makes me
happy (it doesn't), I do like to be as informed as much as possible.
Thank you, Dear Sister, for passing on any information that you have access
to.
Peace and Love,
Terry in KC

Re: New member seeking insights

2009-01-06 22:17:39

Denise,
Thank you so much for the warm welcome and for the advice and info.
The cause of Will's pancreatitis is unknown. He was born with a rare
syndrome called Cornelia deLange Syndrome and we have heard from our
foundation that at least 10 other children with CdLS have had
pancreatitis and some have had several episodes. For an illness that
is supposedly rare in children this seems to be an interesting
finding!
As for Will's eating, he normally is a big eater, eating several
meals and snacks a day(like every two hours) but a slow grower, which
is part of his syndrome. At age 11 he weighs only 37 pounds and
looks more like a 4 year old. Since returning home from this
pancreatic episode he is eating from the minute he wakes up until the
minute he goes to bed. We're not sure if he is trying to comfort
himself from the pain, or eating from the agitation, or if he is just
truly unusually hungry. Has any one encountered this hunger in
recovery before?
Can anyone tell me where he experiences the pain? During the acute
episode it was clear that all areas of his abdomen hurt, even the
light touch of the stethascope hurt. He now has intermittant pain
episodes but we aren't sure where he is feeling the pain..or what it
might feel like.
Thanks again for welcoming me aboard!
Beth
http://www.geocities.com/Heartland/Acres/2451

[ThePancreatitisPlace] Something I found about Zyprexa and Diabetes

2009-01-06 20:56:13

Oh, Jan, I am so sorry! But Sarasota Hospital is a wonderful place -
that's where they transferred my dad when he was so sick. He will be
treated very well there!
Hugs, Eileen

[ThePancreatitisPlace] Pl...

2009-01-06 16:18:00

Hi... Your happy thoughts are much appreciated this morning... and i am
relieved to know that the tubes coming out is not a big deal... I asked
because Crystal said... she went to the OR to get hers JP tubes out
with the last of her pain medicine. So that sent up some flags i don't
like surprises..... especially when it comes to my pan.... and what's left
of it now... You've eassed my mind... I'v3 been using these huge bath
cloths that are soaked in some nice ssmelling stuff..... to wash with...
They feel wonderful... Last night when Tom was changing the bandage.... the
sites of entry looked really good and healed.... and i believe ready to come
out... Some of the bottom of the steri strips are losening up at the bottom
and it feels good to itch those spots... Ohhhhhhhhhhh do they itch.... I
feel like i have fleas..... at times!!! hehe!! i know that's good... the
itching part... that means it's healing.. I soooooooo appreciate you
answering my silly questions..... but i'm trying to be careful and keep[
this rapid healing going in the right direction.... and so far.... so
good. I must say one thing though.... part of the operations we4re to
resection my bowels to the pan and the small intestines... and it wasn't
til 2 days ago that i finallly went to the bathroom. I was getting scared
that the resectioning wasn't going to work.... and i would have
problems going to the bathroom.... but finally... after drinking tons of
aloe juice things happened.... and i cheered!! YIPPEE!!! Hope you
all have a good day.... i'm waiting to call my son Nick....( the one who
kept Denise informed when i was in the hospital) He is in the
hospital... went there last night... and had his appendix taken out!
Ohhhhhhhh my poor baby.... but thankfully he's close to home and nnot at
school in Tampa... So... the good Lord waited for things to happen til
he was closer.... Now...... we are still waiting for Jas and Jenn
to have their baby... My first grandson... Joshua will be his name... any
day now.... please help me through all this..... YIPES! better
go.... i'm rambling love, jan xox

Eileen update (very long)

2009-01-06 02:08:45

Well, my computer crashed, right after my cell phone died. So I came
home today to 562 emails....I can't remember when I last posted, so here
is an update of the last week.
Mark completed his 3rd week of radiation - two more to go. He is just
about completely bald, and his head looks so odd because of all the
scars. I worked Monday and Tuesday, so the medical car took him to the
hospital on those two days.....
Wednesday, I took Mark to the hospital and we also saw the pancreatic
surgeon, who told us that Mark should see his primary care physician
about the cough that he is having. He also recommended a surgeon at
Northwestern University Hospital, which IS in our PPO, since he will
have to have a CAT scan in three weeks, and at some point, another
surgery. Since the pancreas has a cyst on it that seeps fluid into the
chest cavity, he will have to have the cyst removed, and the pancreas
opened up and attached to the small intestine. Mark was really
disappointed to be told that he could not eat - he has been on TPN since
January.
Thursday, we also saw our primary care physician (at another location,
but at least the medical car took him, because I had to work that
morning), who said that Mark should have a chest x-ray, and said that
the thoracic surgeon should not have released him while the chest tube
was still seeping. Oh well. She gave us a referral for a chest x-ray,
but it was at STILL another hospital (damned insurance), and he was too
sick to go. - coughing and throwing up. By the way, Mark has lost 50
pounds - and I have now lost 14, just from exhaustion!
Friday, I woke up with a sore throat and coughing. I took Mark to the
hospital for radiation, we also had blood drawn, and saw the oncologist,
who said that Mark looked very good, but we would have to check back
monthly for a year to monitor the results of the treatment. He said
that Mark will not be able to have radiation done again, and will only
be able to have chemo in small doses. (We have decided to move all of
the doctors except the neurologist and the oncologist from the
University of Chicago Hospital to Northwestern University Hospital,
because of insurance issues - our insurance will only cover the doctors
at U of C at 60%, and will exclude everything that they consider higher
than "usual and customary", which is about 50% of the bill. ) We then
went to the THIRD hospital and tried to get Mark that chest x-ray -
waited two hours, and the line didn't even move. I told Mark that I HAD
to go home and get some rest - I just couldn't do this any more. Then we
had about an hour of "Friday traffic" to top off the day. I get home,
and get an update on Sasha's grades - she is still flunking math and
English, and has a D going in science, which used to be her best class.
Sasha showed up with another girl Friday night at 9:45 PM, after they
had gone to a play (I had told her that she could go out after school,
since she was coming to help me with the cottage this weekend). I asked
if her mom was coming to get her - she said yes. So then I called the
mom, found out that the mom wasn't even home, but the girl's dad was -
he didn't want to come get her, because he was cooking dinner. I told
him that he had to come get her, because I was sick (and I hadn't had
dinner, either, but what else is new) - he didn't show up until she
called him a second time, at 11:30 PM! I had to stay up and get all of
Mark's meds ready for the next two days, but I was pretty annoyed. Then
I went to bed and had the chills and sweated all night.
Saturday morning, Sasha and I took off for a five-hour drive to our
cottage in Michigan to pack it up to be sold. I had planned for an early
start, but ended up going back to bed because I felt so lousy. I didn't
even want to go, but we were closing on Monday, and my girlfriend's
husband was driving up with his truck on Sunday to help move things for
us. As it was, I had to stop at a rest area and take a nap halfway
there, and then I had to take another nap once I got there. ( I got a
friend of ours to stay with Mark in the afternoon (and asked him to take
Mark for that chest xray), and had his brother spend the night with
him. I was pretty nervous about leaving him, but I didn't have much
choice....)
It was freezing at the cottage - it was under 50 degrees INSIDE when we
woke up this morning, but at least I had one night without Mark waking
me up because he needed something! I ended up just giving away a lot of
stuff to our next-door neighbor, just so I wouldn't have to deal with
it. I left most of the furniture (it was old stuff) for the people who
bought the cottage. As it was, we still had to tie stuff to the roof of
the car, and stuff it almost up to the roof inside. Just got home and
parked the car with everything still in it. Ten minutes later, I get a
call from a total stranger who has our DOG, who somehow got out the door
after greeting me, and managed to roll in something that smells just
nauseating.
So I am home, with a stinky dog who will not leave my side, and a needy
husband. I feel like I just ran a triathalon, and I have to go to work
tomorrow.
Sasha at least decided that she had a good time after all (lots of
whining during the trip). I have the lyrics of every single rap song on
the radio (which are pretty bad, let me tell you!) stuck in my head
every time I lie down and try to close my eyes. It is past midnight, and
I have to start all over in six hours... more later!
Eilene

Re: [ThePancreatitisPlace] New member seeking insights

2009-01-06 02:03:42

Beth,
Welcome to The Pancreatitis Place! I am so sorry that you have the
unfortunate luck of having to deal with this dreadful disease, but you have
come to the right place to seek information and gain insight and support.
If you look on the left hand side of the message board you will see a list of
links... one of them is called "LINKS" click on that link and it will open
up a new page. That page will open a window full of folders of information
for you to browse. As you go through the folders you will find lots of
information that may or may not be useful to you. Most of them have good
summaries so you won't have to visit each site to see what is there, just
read a little, if its not what you are looking for move on!!
If you don't find anything that you need, feel free to post questions and I'm
sure you will get lots of good answers from folks on the board, as we have a
few parents on the board too with children that have been sick too. We have
a site for photos if you would like to add photos of your family, please feel
free to do so. And if you have questions about the board or any information
listed in it, please don't hestitate to email myself or ReeAnn at anytime! I
can be reached at DeniseHallock@... and ReeAnn can be reached at
MsReeAnnBetts@... .
As for his wanting to eat... please watch the fats and if he isn't on any
kind of pancreatic enzymes I would suggest talking with your pediatrician
about getting him on something to aid in his digestion. Do they know what
caused the attack? High cholesterol possibly? High Triglycerides can cause
pancreatitis by themselves. My youngest son takes Papaya enzymes daily we
get them at Walmart, they aren't really strong enough to do much but he says
they make his tummy feel better and he's 10. I also have an emotionally
impaired 11 year old. He'll be 12 in August. They keep life interesting
don't they??
Stay strong... many, many {{{HUGZ and Prayers}}} coming your way... Welcome
Aboard!!!
Denise
Denise Hallock in Michigan
Co-Owner ~ The Pancreatitis Place