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Pancre-Ass Act 2

Posted in Pancre-ass with tags , , , , , , on May 30, 2009 by Alison Amok

“Vitality shows in not only the ability to persist but the ability to start over.”

-F. Scott Fitzgerald

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If you’re just getting here please read the first part of this story at Pancre-Ass Act 1.

So here we are, nine months out from my last surgery.  I can normally be found attached to my heating pad on any given day, which has caused a permanent “burn” to my stomach from living with it on my tummy trying to help with the pain.  I’m pretty tethered to my home these days by either my heating pad or my many medications.  I can’t just run out on errands without planning or a designated driver because I need to take narcotics and anti-nausea medication that make it unsafe for me to drive.  So I plan my outings for when my medication is wearing off and I can safely drive.  Every day I take two different pain medications, one a narcotic, the other a “synthetic narcotic” that makes my pain manageable.  I also take two different anti-nausea medications, one that is incredibly sedating and the other, while it does not make me sleepy, its made for cancer patients and the chemotherapy induced nausea.  This second pill is incredibly expensive and costs about $30 a pill.  So needless to say, my insurance only allows me so many of these a month.

As I’ve previously mentioned, I was in the Air Force.  All this began in 2004 about 3 years into my enlistment.  I finally was medically retired in December of 2008.  So I’ve been able to keep my health insurance and get a small retirement check every month.  This is nice because Husband and I don’t have to worry much about the costs of my care and we can afford for me to be sick.  I don’t have to work if I don’t want to and am able to go back to school full time now.

I bet you’re wondering exactly how much patient care I’ve racked up so let me tell you.  I have had 5 ERCP’s, my gallbladder removed, my appendix removed and polyps removed from my uterus.  I have been admitted to the hospital for pancreatitis 6 times and I have lost count the ER visits for when I lose control of my pain and can’t handle it at home any more.  My ER visits normally entail IV fluids, a crazy amount of narcotics, assorted non-narcotic pain medications, multiple doses of anti-nausea medication, blood draws to make sure my liver and pancreatic enzymes are too crazy high warranting an actual hospital admission and an occasional CT scan or abdominal x-ray just to cover the ER doc’s butt and make sure I don’t have some weird tumor or obstruction causing my issues.

I hate ER’s.  HATE HATE HATE them… Well I hate being a patient in them.  I love working in the ER.  Because ER’s deal with all the crayzee who want these drugs and its hard not to be looked at questionably until they read my history.  And then I get absolutely snowed from all the drugs they start pumping through my IV.  And there are good nurses and not-so-great nurses.  The doctors normally are totally understanding and way helpful.  But the nurses can sometimes be real bitches.

Look, I know how it rolls in ERs.  I’ve worked in them my whole professional career until recently.  And some people are just lazy, crazy, bitchy, and/or burnt out and need to move on.  The worst is I’ll occasionally get a nurse who forgets how to push certain drugs and I end up with my arm on fire because they pushed a medication too fast.  Or they don’t listen to me when I tell them my IV has infiltrated again.  And don’t even get me started on telling them I’m a hard stick.  I never tell anyone anymore, I just let them figure it out for themselves.  Because I have learned the HARD WAY that if you tell the person putting in your IV that you are a hard stick they will blow it off and go out of their way to prove your wrong even if that means sticking you 17 times.  YES, once I was so sick I went through 17 sticks before I was able to get an IV.  I do have a rule though.  If you are rude and not nice to me you get two tries, move on let someone else try it because I’m already sick I don’t need you taking your angst out on me.  If you are pleasant about it though, I’ll let you stick me ’til the cows come home because I know its not your fault.  It’s my veins, they suck and pretty much don’t want to participate.  Oh and by the way… Husband is a medic by trade too courtesy of the Air Force and he has a time or two gotten frustrated with the medical staff and started my IV’s for me.

Oh and I forgot to mention the best part, with all my liver issues I bruise incredibly easily.  And all the blood draws and IV’s needed for my tests often make my arms look like a druggy.  There have been days when Husband refuses to let me leave the house without long sleeves on because he’s afraid people will think he’s beating me.

But we make it through it all some how.  It’s become our life and I know its hard for people to understand it.  My parents are wonderful though albeit a little frustrated sometimes because its hard for them to see me so sick and in the hospital all the time.  My mother worries about all my ER visits and hospital admissions and always tries to convince me to let her rush to my side.  Normally I successfully can convince her I’m fine and Husband is taking good care of me.  But now that we live 4 hours away from her, here in DC, instead of the 10 hours we were when we lived in Ohio… I’m thinking I won’t be able to convince her to stay at home anymore.  But that’s fine.  Being in the hospital is really boring and even with all the crazy drugs its no fun.  So all visitors are welcome and I’ve been told I can be pretty entertaining while attached to the Demerol and/or Morphine drip.

Husband and I have it down to a science though.  Before each of my surgeries, I pack a back of essentials.  Underwear, comfortable bras, socks, yoga pants, tank tops and cardigan sweaters.  I throw in some toiletries, like those nice face wipes, Clinique face lotion, my Johnson’s baby lotion for my skin, a comb, a new toothbrush and toothpaste, deodorant.  I normally put in a book that I never read because the drugs make it hard to focus and read.   I put some new DVD movies and my old faves in a travel CD book and pack that too.  I make sure my computer, Nintendo DS, my games, my iPod and all my chargers are packed.  And we put that aside so when I eventually am admitted, Husband can just run home and I have all my creature comforts.

The clothes are the most important part though.  I hate, hate, hate hospital gowns.  They are uncomfortable and completely unflattering.  So I like to bring my own clothes.  The clothes serve a purpose though and that’s why I always bring my own.

Because all the IV contrasts from the ERCP’s and MRI’s and CT’s and all the drugs are so harsh on my veins, my veins are really bad.  I have little veins and they are angry angry after years of medical drama.  And normally I end up with some sort of semi-permanent IV access such as a PICC line or central line.  This is always better in the long run because then I can have a couple different IV fluids running at the same time, have my medication given to me on time, and they have an easy way to draw my blood with out poking and re-poking and re-poking.

The tank tops are important so I don’t have to strip everytime my lines need to be fussed with.  They provide easy access to my chest or arms and I can retain some of my modesty.  And my cardigans provide warmth while being gentle and stretch around any lines coming from my arms.  Plus just because I’m sick, it doesn’t mean I have to be unfashionable.  I normally pack my most colorful sweaters, the bright colors or the fun polka dot ones.  And my socks are always colorful.  I have a million of ankle socks in every color and pattern available.  Because looking down at my feet in my hospital bed, seeing purple polka dots makes my heart happy.

Husband is always great to me during this time and never lets me see his fear.  If anything he takes the opportunity to razz on me a little bit more.  😉  He always sneaks me in an ICEE or two.  He rubs my swollen feet caused by all the IV fluids and puts lotion on my itchy dry legs.  In the ER and right after my procedures, he’ll read to me.  And he such a good sport because he reads whatever I happen to be reading at the time, even if its one of those guilty pleasure romance novels by Nora Roberts.  He is a fabulous husband and I love him dearly, but the fact that he reads to me is what melts my heart.  He hates it, I know, but he does it without complaint and even grudgingly gets into the story and will do voices.

So there it is.  The whole story.  Don’t be afraid to ask questions.  If I wasn’t clear on something let me know!  Or if you just want to know all the little, juicy details I will share!  I have come to terms with my life and it is kinda cathartic talking about it all.

In another post I’ll talk about my fears for the future.  But I feel I’ve said enough for now and I need to give y’all a chance to digest (pun intended) all the information given to you today.

I have an appointment at Georgetown with my doctor in two weeks and we’ll be scheduling my next ERCP then.  I’m dreading the surgery but looking forward to being off the drugs again for awhile.  Its always fun being healthy again, even temporarily, and I normally go a little wild.  Last time I got a tattoo.  This time, I’m starting school so I’m thinking thats enough adventure for this heathly cycle.

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Pancre-Ass Act 1

Posted in Pancre-ass with tags , , , , , , , on May 30, 2009 by Alison Amok

“Life’s disappointments are harder to take when you don’t know any swear words.”

-Calvin & Hobbes (Bill Watterson)

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I am broken and Husband apparently forgot to buy the extended warranty when he purchased me.

It recently occurred to me that you might be curious about this mystery illness I’ve casually glossed over and mentioned here and there.  This post will not be witty.  It will not be full of wistful prose.  It will be an open, outright, and frank discussion on the reality of my life.  So here it goes, try and keep up.

Basically, I have broken pancreatic (or biliary) ducts.  For those of you not in the know, because seriously who really wanders around going “Wow today I want to learn all about the pancreas”, I will explain. So lets get a little anatomy lesson first.

Three organs produce digestive “juices” that help break down the food you eat.  These are the pancreas, the liver and the gallbladder.  The biliary ducts act as the plumbing system for these organs.  The biliary ducts allow bile from your liver to be released from your liver.   The pancreas is the organ normally know for being responsible for producing insulin, which is used to control your blood sugar.  But the pancreas also is responsible for producing a number of hormones and also enzymes that further help breakdown food in your intestines.  Bile is required to digest the food you eat.  Extra bile is stored in the gallbladder until its needed, this is a good organ to have but not necessary so when you have gallbladder problems surgeons normally just remove it.  The gallbladder is basically the middle man between the liver and pancreas, because it holds bile until its needed.  The biliary tree is basically all the ducts that connect these three organs and transport the bile and pancreatic enzymes to the intestines.  So just to make sure we’re all on the same page here…. Bile comes from the liver, through bile ducts, into the pancreas, extra bile is stored in the gallbladder, extra enzymes are added by the pancreas, then all of the bile is transported through the common bile duct into the intestines to break down and absorb your food.  Got it?  Good.

So now that you understand basically how this system works, you can begin to understand my condition.  There isn’t really an official “name” to the condition (like Lupus or Diabetes) I have but it basically referred to as Pancreatic Duct Strictures.  My condition isn’t really just one thing, its more like a lot of little things causing huge problems.  Pancreatic duct strictures can be the result from several things like infection, cancer, gallstones, or for unknown causes which is my version.  My doctors have no idea why I suddenly developed these strictures.   A stricture is basically a significant narrowing of the duct, causing a much smaller hole for everything to go through.

These strictures cause huge problems though.   Because my ducts become so narrow, bile that normally would pass through the pancreas is backing up into my liver.  And because the liver also filters the body of toxins, these toxins are also included in the bile on the way out via the bile ducts.  So all those toxins building up in my liver cause for a lot of problems.  This whole cascade of problems is where my illness lies.  The liver and pancreas cause me a lot of pain.  They also give me a lot of nausea.  And when my liver is particularly sick I get unbelievably itchy.  Because apparently all those toxins that build up in the liver cause a reaction similar to an allergic reaction and cause itching that no allergy medication can fix.  The damaged liver also causes fatigue and arthritis symptoms.  And because my pancreas isn’t being used like it normally should be, because of the duct stricture within the pancreas itself, my pancreas is slowly atrophying.  Basically, its shrinking and slowly dying because it’s not being used, just like muscles do if they’ve been in a cast too long!

At this point I’m sure you’re wondering why this hasn’t been fixed yet!  Well that is a simple answer, it can’t.  Well that’s not entirely true.  There is a major surgery that is an option that requires basically my whole digestive system to be literally taken apart and re-wired.  This is very serious and normally reserved for last case scenario.  Transplantation might also become an option later on if my liver and pancreas become damaged enough.

But we do have a temporary fix and this is why all this comes in cycles.  About once a year, or sometimes more often if my liver starts getting really sick, I have a surgical procedure called an ERCP.  This procedure is done under general anesthesia, that uses endoscopes, like they use for colonoscopies, to take a closer look at the inside of my pancreas and all the ducts.  During this procedure my doctor inserts a temporary stent into the strictured area, to re-stretch out the stricture.  But obviously this is temporary and the ducts start to clamp down again.

After my ERCP, I normally develop pancreatitis.  This is a complication that occurs in 40% of patients after an ERCP, but due to my already scarred ducts and repeated procedures, I’ve developed it every time.  Pancreatitis is literally hell on earth.  Imagine the worst pain you’ve ever had then multiply it times ten.  And all the narcotics they pump through my veins barely touch the pain, they basically just sedate, numb and make me not care about the pain.  I’m live in the drugged state that isn’t sleep because I hurt so bad that sleep is impossible but it isn’t awake because of all the chemicals.  Normally I lose two weeks of my life to a drug-induced haze following my surgeries.

But then, I’m better again.  Its more than better, I’m fabulous again.  Its like one day I wake up and all the pain, the nausea, itching, fatigue is gone.  I am incredibly healthy for about six months and then I begin my downward slide again.  Its a horrible, never ending cycle.  But it is my life, and Husband and I have adjusted to it.

My last surgery was in August of last year and I am pretty sick these days.  The downward spiral towards my next surgery is getting shorter.  I’ve postponed my surgery to about as far as I can go.  Husband and I were hoping to try and push my next surgery out until August again in an attempt for me to be really healthy at the end of this year.  We are going to Disney World in December for our five year anniversary, because we never were able to take a honeymoon because I needed to have an ERCP right after our wedding and then Husband was deployed to Afghanistan for a year about six months after our wedding.  And then life got in the way as it normally does.  I’m also going back to school full time and didn’t want to be sick my first few months, while trying to get back into school mode.

I figure this is a good stopping point for right now.  The rest of the story will be in my next post.  I just don’t want to overwhelm y’all with too much at once.  Because I know it is a crazy story.