cancelled (postoned, really)

I just got a call from my surgeon with the worst possible news-he's come down with the flu, vomiting and diarrhea and cannot do surgery tomorrow.  He said he's very sorry but just not humanly possible to do an 8 hour surgery in the morning.  I do understand but at the moment am just freaking the hell out and don't know how I'll possibly get thru this.  My folks drove all the way out here, booked a hotel for the week, changed ALL the holiday plans and now we have to turn around and go home tomorrow.  I can't stop crying.  I called my parents room (we're in a hotel tonight) and my dad came over and was very calm and tried to help me calm down.  It really will be better later, and the surgeon will be there the whole time instead of his partner caring for me like was planned for this week.  Its just SO incredibly frustrating and I'm completely overwhelmed.
  

Now it's Thrusday and have had a few days to digest all of this craziness.  When I got that call from Dr. Moser (the pancreatic surgeon) I was in shock and said something like "Soooo,  I just go home then?" He was so sick he had to end the conversation to run to the bathroom.  I suppose I'm lucky he didn't come down with the flu 12 hrs. later, at 9:30am, 2 hours into a 9 hr. surgery.  (actually that was my mom's worry, but I  agreed with and wondered about that one myself) I was just crying and rocking back and forth sitting on the bed.  I just felt helpless and scared.  My father really did try to help me calm down immediately after the phone call, and his usual calm demeanor helped me a bit.  I realized I was more worried about how the postponement would affect my parents, people set up to feed the cat and others.  My parents assured me that it was not a problem for them, tho it was not pleasant for anyone, it was just a freak occurrence.  It was obviously not my fault and beyond my control.   We will figure everything out and just do it all over again.  I have to wait till Moser's PA/assistant, Jennifer, comes back to work on Monday to re-schedule it.,   I'm now glad surgery will be in 2011.  As long as everything goes as planned for the surgery I will be feeling better for the year 2011, I have high hopes for this upcoming year...                                                           

Lara's dad test of posting to her blog.

Hi all,
This is a test to be sure I can post to this blog to provide info to all Lara's friends on a timely basis. I'm sure in the upcoming days there will be times she will not be up to doing her own posting.

Two nights in Philly

Just a really quick note tonight because I am exhausted..   I spent the last 2 nights in Jefferson Hospital in Philly and its really impossible to get any decent sleep in the hospital.  I caught the train in Lansdale very early Tuesday morning, thanks to my awesome dad who picked me up at home and drove me there, rode to Market East and walked 3 cold blocks to Jefferson.  I was scheduled for an ERCP to place a stent in my pancreas at 7:30am.  Dr. Moser (surgeon at Pitt) requested Dr. Kowalski place the stent a week before surgery to help open the duct.  An ERCP is an outpatient procedure, normally, but as you know by now, I'm definitely not normal.  The resident doc going over info pre-procedure told me there is a 5% chance of pancreatitis from an ERCP.  I suppose those stats are for those "normal" people, but I and my other cranky panky buddies experience pancreatitis flare-ups around 50% of the time after an ERCP.  So, while optimistic things would go well, I still packed a bag in case they kept me overnight.  Even tho I was given Zofran for nausea and Dilaudid for pain before I even woke up I still came to with horrible pain and nausea, and was vomiting within an hour.  Obviously, I was admitted for the night.  The next morning Dr. Kowalski said I could likely go home, that he knows I'm good at managing my disease at home and smart enough to know when to come back to the hospital if needed.  However, by late afternoon I'd not seen him or other Dr.s, had my nurse page him and he said I really should stay one more night so I could have adequate pain relief and try solid food in the morning.  I woke up in a lot of pain but tried not to ask for Dilaudid since I was determined to go home.  Had a bit of oatmeal for breakfast.  So eating food and not asking for much pain relief got me a ticket home today!  My folks came to the big city to get me, just as it started snowing, which made for a long, slow ride home.  
Now I'm home, had a long, hot shower and I'm sitting in bed with the Babycakes curled up next to me, purring away.  I will be going to sleep soon, which is a rarity for a nite owl like me.  Oh, and I had the best roommate ever in the hospital!  Her name is April, she's about my age and was in for a stricture in her colon.  Since I have a stricture in my pancreas we became "stricture buddies".    We swapped info and will keep in touch.  It was just so nice to have someone to talk to and who understands life with a chronic illness (she has Ulcerative Colitis).   Plus in 6 years in and out of hospitals I've had some wacky roommates here and there, but that's a story for another day.  April and I talked a lot about losing friends to chronic illness.  I know people give up on us after canceling plans many times, not showing up to outings, even not feeling up to talking on the phone, but we still really need friends.  That's my thought for the day, not exactly a tip, but hang on to your friends, no matter how distant they get, that's when they need you the most.  
Thanks so very very much to all of you who still are here for me, I love and appreciate you all!
 

Weird Al Yankovic - Pancreas

Video Day!

Hi, the videos I've been sharing today were intended to go all in one post, but I really couldn't figure that one out right now.  So, sorry for all the separate posts.  They are all about how a pancreas "should" work, so when watching keep in mind that mine does not secrete enzymes or produce insulin.  In the video by Heywood Banks (who I love) is the famous line "may you never have a cranky pancreas!" which the facebook friends with pancreatitis, got our name "cranky pankys".

Video

Heywood Banks Pancreas

crisis day yesterday

My latest crisis: nurse/assistant from my  surgeon's called yesterday at 5pm to tell me he insisted on pushing surgery to the following week, I kinda freaked out and cried then she talked to him and he agreed to keep the surgery on 21st if I agreed to have his Jr. partner watch over me over Christmas. I did of course, we have tooooo many plans set to change anything, I'm coming all the way across the state!  It may not be ideal but i guess it will all work out. I also have to go get a stent placed by ERCP in the next week or so, down at Jefferson in Philly. That's gonna suck but I've been feeling sick most days lately, am so worried about everything and having too many things get in my way.  An ERCP often causes a pancreatitis flare up in folks with CP.  It's caused them for many ERCPs.  

Also, I've been mostly in bed the last 2 days, and woke late yesterday afternoon to discover Babycakes had peed on my dirty laundry in the closet.  Then found the door to her litter box had gotten shut, I probably did it (well, had to, she doesn't shut doors) but don't know when and she was bugging me a lot but I just thought she wanted more (new) food in her already filled bowl, like usual.  I'm really frustrated because its really my fault, I normally scoop out the litter every single day.  She's only peed before when the litter wasn't clean.  Simple solution to just keep the litter clean, right?  I suppose I have to get out of bed every day for that to work.  Anyway, all laundry was washed twice, 2nd time with Clorox 2 and it seems all smell is gone, but I still may just get rid of some older stuff. Also, there is now a big rock (from Belfast, Maine) in the door to her litter box, it can't get shut accidentally anymore.

After most of this calmed down, still running to the laundry room, my friend Paul came over and we went to Zern's, an indoor flea market.  Was good to just get out for a while, even tho I was really over-heated, I often am lately from the narcotics and/or pain,  and there were too many smells there-cooked food, raw food, produce, etc.  Just took a Zofran and kept going.  I'll go back there soon for some produce, its good there and some local and its cheap.  We came back to my place to watch a documentary, one few channels I have on my antenna TV is all documentaries.  It was about the Gerson Institute and therapy which is mostly about healing with nourishment, vitamins and minerals.  It is mainly taught and used to cancer and chronic illnesses, without drugs and mega-doses of vitamins and minerals and raw and  organic food.  It all sounds wonderful if I had the $500 to take the course offered, buy and keep organic foods, and constantly juice and prepare my own food.  They also talked a lot about the health care system and pharmaceutical companies denying or not trying this method because it so easy and inexpensive I but then their workshops, therapy and information is so very expensive and not covered by any insurance. I do take many supplements but they only do so much and I do wish to improve my diet but just have issues with food right now. 

So I'll end on that (as I have a Diet Coke and vitamins for breakfast) and leave with a tip: check out what Gerson therapy is about for yourself, especially if you have a chronic illness or cancer or know someone who does.  They also use this method for extreme weight loss.  I can't recommend their course or therapy (where you go to a treatment center) because I don't know enough about it, and its very expensive.  I believe it makes a lot of sense though, and if you did enough research on your own or with a natural healer you could follow a lot of their ideas. 

 

http://www.gerson.org/

http://www.healingdaily.com/conditions/Gerson-therapy.htm 

Wikipedia article about Dr. Max Gerson 

Its scheduled...

So, I've neglected to write it here but have told most folks already...I'm scheduled for surgery at UPMC on the morning of December 21.   The (at least) 2 week recovery in hospital time means I will be there thru both Christmas and New Years.  I guess most people wouldn't want surgery for Christmas, but I do.  I've wanted to be "fixed" for 6 years now.  From the first episode of pancreatitis I've wanted this to be over.  As long as all goes well, and the surgery does what it should this WILL be the best Christmas present ever.  Of course I'm also a bit bummed about missing the "actual" holidays and scared of the surgery.  Apparently all of my fears and concerns are "normal", according to my therapist yesterday.  Even the brief wishes to just cancel the whole thing and stay home.  I certainly don't feel normal, and this is all scary to me.
I am having a surgery called the Berne procedure and if you care to hear the gory details the basics are here (click on the word here to go to site).  That article is the best explanation I've found on the web (it is rather technical), and personally have gotten most of the info directly from my Dr.   It is very similar to the Berger procedure, which is also on that page.  The reason Dr. Moser chose this particular surgery is to stay out of the way of the portal vein, where the blood clots are.  It will keep the pancreatic duct from continually getting backed up, blocking  food, causing nausea and vomiting and hopefully get rid of the abominable abdominal pain.  (tee-hee, see what I did there? glad I can at least amuse myself while writing)  The surgery will last about 9 hours.  That's the easy part for me, I guess, I'll be blissfully unaware of the difficult work the Dr.s are doing, and the worrying my parents will be doing.  After that, well that's the part that's scaring me.  I will probably be in intensive care for a day or two, and then a long haul of recovery.  Apparently abdominal surgery is one of the toughest and most painful surgeries.  I already favor my upper abdominal area, where most of my pain is, but that will get worse for a while.  There will also be quite a big scar.  
All that's left to get me to December 21st is cleaning my apartment, arranging for people to feed Babycakes, and some pre-op testing.  I know she will be taken care of, but I will really miss and worry about Babycakes.  I also know cats don't have the greatest sense of time and she'll just sleep thru most of the time.  I'm also having a pre-holiday/pre-op party in a week or two, so I can have a bit of Christmas and a chance to hang out with friends before all of this.  
I'll give you more details as I have them.  Thanks for reading.  I don't have a tip today, just keep in touch with me as I go thru all of this!

World Diabetes Day

As I write this the clock is turning to midnight and it is now November 14, 2010.  It is world diabetes day.  Support diabetes in any way you can.  If you have friends and/or family members with diabetes do all you can to help them thru the maze of diabetes and try your best not to be the food police.  If you have diabetes~take care of yourself!  Any change in diet, any extra exercise you can do, every baby step helps you live longer and healthier.  It is very possible to live a long and healthy life as any type of diabetic.
I was diagnosed Type 1 diabetic in Feb. 2008.  My pancreas simply quit making insulin.  I knew this was a possibility with chronic pancreatitis but hadn't really thought of it much.  The day a blood test came into my GI Dr.s office with a reading of almost 600 changed my life.  They called me immediately, said they thought it was a mistake and to repeat the test, but to do it soon in case it was correct.  I went right back to the lab, and it had already closed for the day.  My Dr.s advice was to go to the ER and get a finger stick and blood test, which I did.  I don't remember the number, but it was still over 500 (for those who don't know that's WAY too high.  Also, I test glucose in mg/dL,  and those in other countries usually read in mmol/l.  Conversion information here.)  Surprisingly, and I think, wrongly, the ER doc did not give me insulin, since I wasn't diagnosed diabetic.  Although numbers that high really should be treated ASAP.   That was a Saturday and Monday morning I went to my primary Dr. and was officially diagnosed Type 1 diabetic and prescribed insulin.  I am considered Type 1 because I am insulin dependent,  although people can develop "regular" Type 1 at any age.  Mary Tyler Moore was diagnosed Type 1 at 33, the same age I was at diagnosis.
I had been afraid of needles most of my life, and had felt even worse about them after years of difficult IV sticks.  I've always had small, tiny veins  (thanks Mom, or the Stinson side in general I guess) and they'd been used many times.  Most times I go to the ER is after days of vomiting and my veins are almost impossible to find and I get poked many times.  So that first insulin injection was really hard to do.  I had everything ready, and the needle at my thigh but just couldn't put it in.  After over a half an hour, I called my friend Frieda who was taking injections for RA to ask her how she got over her fear.  We talked for a few minutes, and she said "just do it, put the phone down, do it NOW and get it over with."  So I did just that, and survived it and have had no issues with giving my own shots since then.  I take long acting insulin, Novolin, twice a day and Novolog with meals.  Usually at least 3 shots a day.  I also need to check my glucose at least 4 times a day, with a finger prick to get a drop of blood.  With an average of 4 shots a day, I've had over 2,500 shots and 3300 finger pricks in my time with diabetes.   I'm doing quite well with the 'betes.   When I was first diagnosed my A1C (average glucose reading over 3 months) was 9.7 and 3 months after was down to a 7, and have kept in the 6.5 range since then.  Its quite tricky to combine the pancreatitis diet of higher carbs, low fat and low protein with what's best for diabetics-lower carbs and higher protein.

So please support World Diabetes Day.  Unfortunately, other countries do more on this day than the US does.  Pass the word on to everyone you know.  If you are diabetic please visit this site http://bigbluetest.org/ and participate in The Big Blue Test this afternoon.  Its easy, I'll be doing it and you should too!

Re: previous post

Just two days before I wrote my last post, with a link to a great article about suicide, another friend gave in to the terrible thoughts, sailed toward the sirens and ended her life.  I know her from a friend of her mother, have probably spent more time with her mom and my friend who is the girl's godmother, but I knew her for many years and we spent time together in Rehobeth Beach, Delaware.  She will be missed by many, most of all by her young son.
I didn't publish the previous post on facebook (at least I don't think I did) because I didn't want to bring much attention to it, but those who saw it anyway have told me it was helpful so I ask you to read it now and the article via link.  Suicide has become far to prevalent in teenagers and young adults and I hope this does not continue.  The extreme bullying has to have contributed to the rise, another issue that frightens me.  I was a prime target for bullies, mostly in junior high (that's why I am so happy the former East Junior High in Waynesboro is now an empty field).   I really believe that bullies create bullies-parents who encourage bullying and kids who were bullied and are lashing out.  Both the schools and parents need to work on this, and take it very seriously. 

Article from Psych Central

This is just a very good article about suicide I read today.   Most of the words could be my own, and I certainly don't want to scare anyone, just passing this along.  I lost one good friend to suicide, another has had too many close calls and I'll admit to having suicidal thoughts in my past.  Ironically, I was more depressed and had suicidal thoughts more often before I got sick with pancreatitis.  Since being so ill I believe I've just fought so hard to maintain my life that there is no way I'd give up now.  That doesn't keep the idea of it from creeping in now and then, but no matter how down I get about this damn disease, I know I'll not end my own life.  So just take a look:


Suicide is Not Painless~from Psych Central 
(http://blogs.psychcentral.com/unplugged/2010/11/suicide-in-not-painless/)

I love this painting and the story of the Sirens trying to lure Jason and the Argonauts to their death on a rocky shore.

View Pittsburgh

A map of downtown Pittsburgh, or google the address of the Presby building, where my Dr.s and procedure area are,

200 Lothrop st

Pittsburgh, PA 15213

Downtown Pittsburgh

About the hospital:
UPMC website

and the best place in Pittsburgh:
http://phipps.conservatory.org/

Home from Pittsburgh

Hi to all and thanks for everyone's well-wishes and prayers, it helped me get thru a difficult few days.  Right now I am home and well, feeling just a bit better than the day before, but can definitely feel that they poked around in my panky.  (I just added panky to my dictionary, its short for pancreas and the name of a friend from the  Milford Fire Co.)  I slept for 12 hrs. last night, I definitely needed it.  I also just erased a whole paragraph and lost it, it saves drafts as you go along, but couldn't retrieve it-damn..
So, we started the journey at 5:30am Thurs. Oct. 14th with my parents picking me up in Schwenksville and I was actually awake and ready.  We arrived in downtown Pittsburgh by 11am and was plenty early for my noon appointment to have the PICC line placed.  Instead of the PICC I thought I was getting they placed a simple IV line in my upper arm, just for IV access.  My veins are just very small to begin with, and have been used too much in the last 6 years.  Next I went thru pre-op testing, hoping that its in the window of time before a surgery, I'm not scheduled yet and really don't know when it will be.  But they did everything-blood test, chest x-ray, heart monitoring, and a general exam.  Got a CT scan a little later than scheduled, and had to drink my yummy radioactive drink for an hour before, 1 cup every 15 min.  Then when the CT tech attached my IV for the test, she was worried about me leaving the hosp. with the IV site, said they weren't supposed to release people with one.  So it took almost an hour to get the head CT woman to write a release, that I was indeed ordered to keep the line for my procedure in the am.  My parents were in the waiting room most of the day, they came prepared for that tho, and took a break for lunch.  I have a new little electronic solitaire game, I used to play it on my iPod constantly, esp. waiting for appts. but it broke recently :(   Was difficult to get thru all of this without one, and will really need a new MP3 player of some kind before surgery.  I am working with a wonderful hypno-therapist who made an MP3 to listen to just for hospital stuff-IVs, procedures, hospital stays, etc.
My parents went out to dinner alone, I wasn't feeling well from the CT scan drink and not eating all day, plus was fed up and cranky from everything taking too long.  I stayed in with the TV and had crackers and ginger ale.
Fri. am at 6:30 my mom and I arrived at UPMC's Presby building by taxi. My procedure was scheduled at 8:00 and I needed to arrive then for pre-procedure stuff.  Glad I had the IV site already, they were about to give the job to an EMT student, don't wanna mistrust the kid, but I really doubt he could have found a vein.  I was quite nervous at that point, but everyone was nice, and I'd had a Xanax with my morning meds.  In the procedure room I was out in a minute or two, thanks to what ever the nurse gave me, "for the ride" from the pre-op area down the hall.  Next thing I know (about 2 hrs. later I think) I kind of woke up, was in great pain and feeling sick enough to move my body towards the trash can on the side of the room, with the bars up on the bed.  A nurse came over, gave me the tiny kidney-shaped thingy to puke in and got me shots of Dilaudid and Zofran (for pain and nausea, respectively).  The Dr. who preformed my surgery, Dr. Sanders, talked to my folks, and I was taken to a room.  They figured I was in too much pain and nauseous to go home.  My parents told me what went on when I was in the room and mostly awake.  Dr. Sanders intended to get a wire thru the length of my pancreatic duct, he tried from one end with the wire and discovered how clogged it was in the middle, tried to go in from the other end with a needle. He was not successful in getting thru either way, and could not get the wire in.  He put a tiny stent in, designed to fall out as soon as I ate.  He told them, and me, that the surgery Dr. Moser previously talked about doing was definitely the only option left.  They tried the last possible procedure that could help. The surgery is not yet scheduled, Dr. Moser is in China currently and I'll need to coordinate times that I can get there and get back home, with being in hospital for at least 2 weeks after surgery.
As much as I hate to stay in hospital (and I like to write it like that now, as if I'm British), I was glad to be  still and medicated.  They kept on IV fluids thru the night.  I had the wonderful resident doctor, Dr. Daniella Damian who was from Romania, very sweet and attentive, she stopped to check in on me 3 times Fri. afternoon and evening.  Dr. Sanders and his resident came back to see me around 8pm, which impressed me, that's a long day for them, I was probably the first procedure at 8am but that's a longer than 12 hour day.  My parents had gone back to the hotel and to dinner after I got in a room, I slept off and on most of the afternoon, was so tired from the procedure.  I had some ginger ale and ice water in the evening and that went OK.
I was in lots more pain in the morning, I slept a few hours in the middle of the night, and being in one position and still too long hurts worse, and all of the anesthesia had worn off.  I got a yummy tray of clear liquids for breakfast-decaf tea, broth and jell-o.   Had half the tea and jell-o, just can't do broth for breakfast.  Dr. Damian came in around 9, asked if I wanted to try oral meds and go home later, said definitely yes.  It was worth some extra pain to not have to stay in hospital.  My parents came in around 11, and sometime after noon, they let me go.  The discharge insructions were to just take it easy, go back to my normal diet and get an x-ray and see my local doc in two weeks.
We went back to the hotel, I had a fabulous shower and cup of coffee.  (I know panky people, I shouldn't drink coffee, its the one vice I can't completely give up)  My mother had read about an orchid show on Sat., at a building of the Phipps conservatory, not in the actual botanical gardens, but another old building nearby.  I felt well enough for a short visit to the orchid show, in the small building and bonus of orchids for sale.  Talked to almost every grower there, got some good tips and information.  My folks bought me a lovely dark purple lady slipper ordhid.  Went back to the hotel to lay down, that's really the only way I feel any more comfortable, sitting isn't great.  I feel best laying on my left side with a pillow under me.  I had broth, jell-o and crackers while my parents went out to dinner at the Hofbrau house, which sounded intresting but I was too interested in laying down and sleeping a bit.  I also took in as much cable TV as I could, since I now have an antenna and converter box set-up at home.  I slept off and on thru the night, we got up for free breakfast, with lots of Steeler fans around, there was a game at noon downtown.  Left around 9am and was home before 3, not too bad really,  but was hurting by the end of the trip.  The kitty miss Babycakes was very happy to see me and even let my parents say hello.  I also came home to a nice surprise, a new espresso maker!  From Paul, who came over to feed Miss Cakes while I was gone.  (again, I know with the coffee, hehe)
As I began with, I now feel a bit better each day, sleeping a lot and just hanging in there.  Hopefully will schedule the surgery soon so I know when to expect and plan for things.  I didn't follow my own tip this last visit and get all my records, but UPMC is much better than Grand View or Jefferson with returning phone calls and getting things done and I asked for records to be sent to me today.  And my new tip is to read your written prescription before you hand it to the pharmacist.  I was given a script for 5 mg. of Oxycodone, to be taken in addition to my usual 10 mg. a few times a day, and was written as such.  The bottle came out with "take one tablet by mouth every 6 hr. as needed for pain up to 7 days".   I knew what the Dr. was giving me, but if someone didn't understand, or the Dr. didn't explain exactly how to take it, it could be misconstrued and they'd take only 5 mg. and feel worse than usual.  I doubt it, but hey, basically just a good reason to read exactly how to take things and/or ask your Dr. how to take it correctly.

Wow, when I previewed this I realized its really long!  If you read this far, thanks.  I just keep writing, its good to get it all out.. so there's another tip, if you write it all out things really do feel better, more finished.

 my new orchid

sunset view of Pittsburgh, Allegeny river to left, tallest building is UPMC's main building

UMPC, take one

This is going to be short and sweet, I'm in a rather foul mood.  Leaving Schwenksville at 5:45am was a bad enough start.  Everything that had to be done today took waaaay longer than expected, as usually happens here.  We got into Pittsburgh around 11am, the trip only took about 5 1/2 hrs.   PICC line placement was first and it turns out they ordered a mini PICC or something, don't remember its exact name, but basically a line in my upper arm, but doesn't run as long as a usual PICC.  Schedules clashed for CT scan and Pre-OP testing and signatures, both took way too long and we didn't leave UPMC until after 6pm.  I'm a cranky tired bitch after all that and lack of sleep so I said I wasn't going out to dinner and my parents are out eating now.  I have a hotel room to myself, which is nice, and I'm soon going to lay down and watch some TV until I pass out.  Wake up at 5 something in the morning, get a cab back to UPMC (hotel shuttle doesn't run that early) and start ERCP/EUS procedure at 6:30am. 
Hopefully some funny TV and time alone will calm things down, heading to the lobby now for a cup of tea.
I hope to be able to update after the procedure tomorrow.  I just keep in mind that even if I do have a flare-up from the procedure, I'll wake up under medical care, anything is better than dealing with flare-ups home alone.  I have faith it will all turn out OK.

Information about and images of the pancreas

I understand that if you don't have pancreatitis yourself its difficult to figure all this out.  Hell, its difficult for me and I've had it for 6 years.  So here are some links to good websites where you can enter a term you want to understand, or see images of the areas I'm talking about.

http://pancreas.org/

http://en.wikipedia.org/wiki/Pancreas

http://pancreasfoundation.org/

How it all began...

Hi All...


The main reason I've started this blog is to keep friends and family updated on my health and upcoming surgery.  I'm also here to follow friends' blogs more easily.
I have had chronic pancreatitis for over 6 years.  I am having surgery to help stop blockages and pseudo cysts  from happening and to hopefully lessen my pain.  The surgery will take place sometime in the end of November, it is not scheduled yet because they are doing more testing before and putting in a stent on Friday, Oct. 15.  The stent will go through the length of my pancreatic duct.  Its likely to cause a flare-up of my pancreas because my pancreatic duct is not straight and narrow like it should be..it balloons up in spots, goes sideways, and is too narrow in some spots.  The stent placement, by ERCP/EUS and upcoming surgeries will be done at University of Pittsburgh Medical Center (UPMC) in downtown Pittsburgh, PA.  It is 6 hours away from my home in Schwenksville, PA, which is about an hour north of Philadelphia.  So even the first 3 visits for testing and consultation were difficult.  My parents drove me twice and the last time my good friend Anna S. drove me.  My parents are taking me to have the ERCP/EUS, we leave super-early on Thrusday so I can have  PICC line placed (a central line in my upper arm) and then have a CT scan done.  Then we get to relax a bit before going to bed early.  The procedure is scheduled for 8:00 am and I need to be there by 6:30.  I will keep you updated on the procedure.  This what my pancreatic duct looks like:

So this was going to be about how this all started.  It was 2004, I was living in Lansdale, sharing a house with a friend.  A few months into living there I began to have serious depression, a stay in the mental health wing of GVH and things went downhill from there.  I quit my job of about a decade of working in group homes with Mentally Retarded adults, a job I loved for a long time but had been getting burned out in.  I really was no longer useful at the job, I could barely take care of myself, how could I take care of others who depended on me?  I lived off my retirement fund for a while but had to go on state assistance for medical care and food stamps.  Around the same time I started losing weight rapidly, getting nauseous often and pain in my upper abdomen.   For about 6 months I would vomit for up to days at a time, most of the time just bile and then dry heaves (its gross, but that's what you're in for if you read this...this disease has lots of gross moments) All I could do was go to the ER, usually driving myself because I had isolated myself from friends and my parents.  All they ever did in the ER (Grand View in Sellersville, PA)  was treat my nausea, give me fluids and ignore my pain.  They figured I was drug seeking because I had mental health issues.  They also assumed I was drinking, I quit drinking alcohol completely when I began feeling sick, and rarely ate much.  Overall, I lost 70 pounds in under 6 months, was malnourished and ignored by the medical community.   One episode came with MUCH more severe pain, vomiting blood and scared the shit out of me.  I went again to the ER, and these symptoms finally got their attention, my pancreatic enzymes were thru the roof on bloodwork and they did a CT and then ultrasound.  They found tons of tiny gallstones in my gallbladder and a stone lodged in the common bile duct which had inflamed my pancreas.  Basically at that time I needed my gallbladder removed immediately and was having an acute attack of pancreatitis.  GVH removed the gallbladder, kept me NPO (nothing by mouth, IV fluids only) to rest the pancreas and eventually sent me to Jefferson Hospital in Philadelphia.  Dr. Thomas Kowalski at Jefferson is known as one of the leading pancreatic specialists on the east coast and my Dr. Dobroda, my GI at GVH knew him personally and they worked together on my care from then on.  They couldn't do anything for me at that time other than rest the pancreas, give me anti-nausea and pain meds.  I began taking enzymes with my food, and will need to take them the rest of my life.  If I eat without taking enzymes, especially a meal with any fat in it, I will vomit or have diarrhea.  Even with enzymes, I often have diarrhea, or I have days of constipation from the narcotics.  I would love to have a normal poop.  So I figured I was in for a life of pain and sickness, was malnourished and relatively thin (I'd been chubby all of my life, my eating habits probably contributed to the gallstones.) and  feeling hopeless.  I then applied for social security, as I knew I wouldn't be able to work for at least the near future.  Was turned down the first time, as most people are (due to too many people trying to abuse the system) but was approved the 2nd time, working with a lawyer.  I was at the end of my friend's generosity to let me remain in his home after I was unable to pay rent.  I'd been babysitting when able for a friend's neighbor.  One night I talked to the kid's mom about needing somewhere to live and she offered me their spare room in exchange for my babysitting services.  I continued to get sicker while living there, spent many hours sitting on the floor by the toilet, have been known to actually fall asleep with my head on the toilet seat.  I still watched the little girl, she grew used to hanging out in my bedroom on on the living room couch just watching movies, instead of running around at the park or with the dog.  I had fun with her and feel lucky to been a part of that family for a while, I lived there for 3 years altogether.  The family was somewhat disfunctional, it was messy and there were drug problems I found out about.  I was also really ready for having some independence back and looked for my own place.   In 2006 (I believe) I ended up at Jefferson Hospital for 65 days in a row, with a stent placed in my pancreas, to drain the pseudo cysts that had grown from blockage.   I was NPO most of that time and on high doses of pain killers.  When I was finally released I was still living with the family, and glad they allowed me to stay and kept the room while I was gone for so long.
So we're up to around 2006.  I need to end here for now, and consult records for dates and what surgeries and procedures I've had.  I can't remember much at all off the top of my head.  I've learned to keep all of my own medical records, esp. while going to 3 different hospitals, they don't always transfer what you need or when you need it.   That's my tip for the day, no matter what your health is:  keep all your own records!  It will help in an emergency to have them all in one place, and available for the Dr. to see, without relying on other places to coordinate.

So I am leaving early Thrus. morning and should be home Sunday afternoon as long as I don't have too bad of a flare-up and get stuck in Pittsburgh...