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...