Beware the Heparin Vampire

So poor Larry and Shelby.  I paged for them to come since my bag didn't just spring a leak, it totally let go on the side of my body, thus covering my gown and the bed in well....contents.  And since I was still on clear liquids, I do mean cover as it was like water.  Larry comes in, asks what is needed, and I tell him what I normally use for my ostomy.  He goes to the supply cabinet and comes back with the available wafers that they have.  They were big enough for a person with a 2xl stoma.  They were huge!  They also had the tape border on them, which my skin reacts to, so we had to modify just a bit by cutting off the whole tape edging.  Shelby came in for the assist, bringing towels to put under me as the stoma was continuing to leak, and got a heat pack to warm up the wafer at my encouraging.  See, when I was originally hospitalized back at Vassar, I was told by my home health aide (right after surgery) that the best way to get a bag to stick is to warm up the wafer by rubbing it between your hands for between thirty and sixty seconds, with the backing still on of course.  That way the wafer is about the same temeprature as your skin and sticks so well indeed.  So with lack of range of motion on my arms and an inability to warm anything up, Shelby got the heat pack so we could put the wafer on it to 'self warm.'  In addition, they found me adapt barrier rings by some stroke of luck (which help prevent erosion from stool on skin and are my personal God send), and we managed to get me cleaned up, the new bag on, and new bedding in the course of about twenty minutes.  In hospital time, that's record speed!  I think that there probably aren't too many ileostomy patients that find their way onto the spinal unit, so it was a crash course for all of my nurses in dealing with an ile with a mind of its own.  I'm pretty sure some of the nurses hadn't handled them before, but knew what to do from reading it in a textbook or hearing it in a lecture, but it's always good to have the hands on experience.  Larry, bless him, found out the proper size I used and put an order in for the correct sized supplies to be sent to the floor to have on hand for the next time it fell off.  They even were to be put in my room number specifically.  I really felt like I was getting 5 star treatment, at least as far as my ostomy was concerned. 

Larry came back in with my evening dose of heparin, the bood thinner I was on to keep clots from forming in my body since I had been immobile for so long.  Normally they can do it in your belly so it hurts less, but considering my was covered in bandages, the only option seemed to be my right thigh.  They squeeze a chunk of your thigh, plunge the needle tip in, and give it a good push to get all of the medicine inside.  It had become somewhat of a joke between Rich and me regarding the shots, as my skin scars so easily, it was beginning to look like a pattern of some nature.  After the heparin vampire did the first few puncture marks, they varied around my leg.  We were wondering if we should go for a rousing game of connect the dots or see if we could do constellation patterns.  They hurt like the dickens going in, burn for about three minutes afterward, and at least on my body, left marks that didn't go away, but at least I wasn't clotting internally.  That, with my history, is a blessing.

See, back when I was in college I got very bad cellulitis in my ankle during the last week of school.  It got to the point that I could no longer walk on my foot, but moreso hobble.  When my parents came to pick me up and bring me back home for the year they found me sitting in my room with hardly anything packed.  What was upset on their part quickly turned to concern when they saw that my ankle was about three times the size it should have been, and it was on fire and I was in severe pain.  They hurridly packed me up, brought me home, and I went to my podiatrist who said I'd need to go to the doctor the next day.  By the next morning, I had developed a blood clot in the tip of my thumb, and ended up being admitted to the hospital for ten days.  Since then, I'm considered at risk for clots, hence taking the extra precaution with the heparin to make sure it didn't happen while lying flat in bed. 

I was also getting used to having a new roommate.  She was an older lady, somewhere in her 70s if I had to venture a guess.  She was a bit of an add one.  She was dressed in a sweatshirt and sweatpants.  She had absolutely no i.v.s on her at all.  She took two pills orally per day and complained about everything.  And I do mean everything.  I just had no clue how bad she would be as a roommate, but I'd soon learn, she was the antithesis of the nice older lady.  But day three came to an end, or so I thought.  Hoping to get some sleep, we turned off the lights, and for the first time by back was pain free.  I slowly drifted off to a semi-conscious sleep, happy that I wasn't on the verge of tears. 

It looked like a bug's eye....

Okay.  Wow.  Talk about a whirlwind of a week.  And some stunning alliteration.  But I digress.....

So morning of surgery, we had to leave at 4am, and considering I went to bed around 245am, I was just a tad bit sleepy, and yet on the two hour ride up to Albany, I don't remember sleeping even a minute.  I think my already jumpy nerves were getting the best of me.  My mouth, already dry since after midnight is NPO (nothing to eat or drink, including gum, tooth brushing, etc), is like cotton.  We get there and dad drops mom and me off to go get started in the admission processing.  We go in, get checked in, and I get taken back into the back to start filling out the medical history stuff.  Then they bring in the nurse to start my i.v. to run the sleepy drugs that are normally given pre-surgery.  As anticipated, it hurt like the dickens and my vein blows.  The nurse goes back and gets the 'sure thing,' a woman who is skilled at getting veins of those who are like me.  The woman comes over, says 'I've had you before, right?' and I said 'yup, so hopefully you'll be able to get it.'  Yeah.  Didn't happen.  So my already frayed nerves at this point are completely shot and I burst into tears.  For me, this was a worst case scenario.  I've never been this on edge prior to surgery, and when my veins aren't even able to be gotten by the expert who has gotten them before, it ups the panic tenfold.  They tell me that they aren't going to run the i.v. until I'm under with the gas anesthesia.  Mom and Dad pray over me, and I'm wheeled away.

I've never been in the operating room fully awake.  Never.  I'm usually on the sleepy time i.v. stuff and passed out drooling by the time I'm wheeled away.  It was such a sense of panic to be back there, flat on my back, looking up and around at the massive sterility that is the OR.  The light overhead has to be a minimum of three feet in diameter, made up of at least (or so it seemed) 100 little lights that I knew would soon be peering down into my abdomen, illuminating all for my surgeons to see.  I swear, it looked like a bug's eye.  And in the midst of my soaking up of my surroundings, Dr. Lee walks over.  Greets me with a good morning and how things have been going.  I told him about the increased issues with my uterus, and he assures me he'll take a look and take good care of me, at which time I break down crying again.  The look on Dr. Lee's face scared me.  He asked why, I told him of my feelings, my fears with this surgery, and asked him to bring me through it all.  He reassured me that I was in good hands with both him and Dr. Polynice and that I'd be fine.  Crying.  To my surgeon.  And in the biggest panic you can imagine.  Dr. Polynice also walks in, Dr. Lee grabs him, pulls him aside, briefs him on my lack on emotional stability, and he also came over and reassured me everything would be fine. 

Still sniffling, I laid back down on the gurney and was strapped down, oxygen mask over my face.  I could hear everyone still talking, hear them say to start the gas through the mask.  Unable to move, gas started getting pumped through.  I don't have many fears in life, but it was scary to sense that I was losing oxygen and it was being replaced by something that was making me feel like I was suffocating.  And while breathing as deeply as being told, I went under.....

Over the puddles and through the woods....

a warrior dash training we go.
Our feet help us run, we're having such fun

And we hope we break no bo-ones

(that word is bones, stretched out......sing it to "Over the River and Through the Woods" in case you were confused)

So.  Less than a week to go.  And I've been beyond delinquent with posting.  I do have a valid, legitimate excuse though, at least in my opinion.  I've been rent-a-nanny for the past few weeks on and off.

My brother is stationed at Fort Dix right now, and is a single father of a very active three year old boy.  He's currently in air traffic control, and is working his butt off, but is on shift work which consists of two weeks of days and two weeks of nights.  During his weeks of nights, he goes in at 3 and gets home around 11, so normally his son goes into a baby sitter's house and falls asleep there until Kevin is able to pick him up.  Enter Auntie :)

I've gone down three times in the last four weeks to help out with Colton (his son) so that they could have some home cooked meals and quality time.  I'm loving the proximity and the fact that I get to see my brother and nephew more, and get to help out.  That said, it's fairly exhausting parenting a toddler, so I've been negligent with my postings because by the time I get him bathed and down to bed I'm about ready to crash and usually do.

Training has been going wonderfully now that we have the expanded terrain/area on which we go.  It's such a help having the extension of ground to cover to make it as close to the dash as humanly possible.  Rich (the guy with whom I'm running) is just in amazing shape.  He sets the pace for going up the hill and I do my best to try to catch him.  He stays about 5-8 minutes ahead of me, and I try to keep him in sight distance.  Unfortunately, every time I get closer, he pushes himself to try to lose me.  It's a fun game of cat and mouse that has really stepped up our run.  We're able to do the whole 3+ miles in 43 minutes.  I realize that sounds horribly lame, but if I had been able to get a video of the road on which we train, you'd understand it's much more of a steep hike than a flat jog around a level track, so keeping the pace and time that we have has made us very proud. 

I'm anxious to run/hike/jog the dash again this year, knowing what I'm facing.  Last year I completed it in one hour, one minute, twenty seconds.  My goal was to knock off at least 20 seconds this year, but I'll do the best I can.  I'm doing light training this week, drinking protein packed chocolate milk (mmmmm, milk) and picking up our team shirts. Yes, you read right, team shirts. 

I have a former business associate who owns a screen printing company.  He and his business are awesome.  Visit it at http://www.mixtureprints.com/ .  Chris does individual custom screen printing if you have a self design or only need a singular or few shirts made.  So tomorrow I get the LBC Warrior tanks that were made so we can be matching on Saturday.  We're going to have LBC Warriors on the front and our names on the back with the dates we're running.  I'll have last year's and this year's, and Rich will have this year's dates.  Every event we do, and every date we run we'll have added to the back of the tanks.  And if we have anyone else join the ranks, they'll get shirts too with their names and dates on the backs of them. 

I'm exhausted at this point, but cautiously optimistic about the run.  I'm hoping I do better this year but again, having had surgery in January, as long as I finish I'll be happy.  And with surgery about a month away, I'm cramming as much into my remaining weeks as possible.  As is, I have no clue how long it'll take my body to fully recover from this one and if I'll have full mobility afterward. 

So I'll try to update once more with the pic of the shirts.  And then, on Saturday at 9am, we run, we hike, we conquer.  And I'll do a post update for y'all with pics :)  

Thanks for your love, support, and prayers.  It means the world to me. 

Love ya,

B 

so...

A doctor walks into a room.  He talks to the patient about the newest surgery that's going to be needed, and asks about the patient's ileostomy and whether it's working well or not.  She assures him it is, but that healing after surgery is going to be a crap shoot.  He looks at her, deadpan, and says "literally."

ba dum ching!

get it?  ileostomy?  as a crap shoot?  oh, forget it. 

Honestly, I had an interesting meeting with Dr. Lee yesterday.  It was the first meeting I was going into where I already knew what was going to happen, what needed to be said, so nerves really weren't that high.  Truthfully, I'm kind of taking this surgery in stride.  That's not to say that it's not going to be a major major surgery, which it will, but how else can I view it but with humor?

The crap shoot?  Yeah, had Dr. Lee laughing with that one.  When we discussed what Dr. Polynice was going to do to my thighs, and that only one might be involved?  I again had Dr. Lee laughing and shaking his head when I said "I don't care if he does both.  At least then they'll be even!"  And later, when discussing which surgeon would be doing what, in my oh-so-delicate manner, I said "And you'll be reaming me out" much to Dr. Lee's amusement.  Sometimes I think he's not quite sure how to take me, but at least I can stay positive and joke about it, and I think that might be refreshing?  Beats me. 

So the surgery is going to be a bit bigger than expected, which is fine with me.  Dr. Lee is of the opinion (as am I) that as long as I'm under, it's better to open me up abdominally and make sure there is NOTHING overlooked.  It would suck to do this surgery without the abdominal component, and 3 months later develop another sinus from whatever would still be going on abdominally that we happened to overlook.  So Dr. Lee is going to cut the gut, make sure that's okay inside and if it's not, fix whatever is wrong.  Then he's going to open up and ream out my rectal sinus that's not healing, and he'll be closing me up abdominally while Dr. Polynice and his team will start with the gracilis cutting and stuffing into the butt.  The new expectation of time, with two surgical crews working on me simultaneously, is 6ish hours, give or take depending on what Dr. Lee finds abdominally. 

Surgery is scheduled for September 14th at this point, which means I get to do the dash AND have my birthday before going under the knife again.  That alone makes me happy. 

I started training last Sunday with my little walking group.  We're planning on continuing every Sunday until the dash to improve our strength and time.  I'll post separately regarding training. 

So that is all for now.  No more follow up appointments until my pre surgical workup, the week of.  I get to enjoy the summer, work hard at training, and get myself in great shape before surgery. 

Love to all and thanks for the thoughts and prayers.  Now for training and Chocolate milk, hummus and hula.  Whatever I can do to keep in shape and kick that dash's tush. 

kiss.hug.love

B

surgery on hold....for now...

So, went to see Dr. Lee first thing Monday morning.  You know that you're there more than you should be when 1, all the nurses recognize you by name and 2, the office and booking staff says "you're back already?  that's NOT a good thing." 

Dr. Lee examined me and came up with one of two situations to have caused what I went through on Saturday.  Because I'd had some pelvic pain prior to this happening he thinks that it was possibly a pocket of leftover fluid from the last surgery that got trapped inside and forced its way out through my reproductive areas as the path of least resistance out of my body, and that it was a one time thing and it will not happen again.  It was a little thicker than I think it would have been to have been just fluid, but that's just my opinion.  This is scenario #1, or the best case scenario.

Scenario #2 is the worst case, which is that there is in fact a fistula between the small intestine and reproductive areas.  If it is this case, it will in fact happen again, be it sooner or later, and will require major abdominal surgery to fix it.  We are all hoping this is not the case as it would set me back at least 8 weeks in recovery. 

So now we wait.  I'm back to not driving again, as we don't want to exacerbate anything.  I've had more "stuff" come out since I started eating again.  I'm not contacting Dr. Lee right away though.  I'm going to wait until it either happens again or I start having a severe amount of pain, whichever comes first.  It's beyond frustrating that my body just won't be normal. 

If anything changes, I'll keep you posted. 

Love ya,

B 

Oh. Crap. Literally.

Oh boy, where to begin....

I went for my follow up this past Thursday with Dr. Lee and am still not totally healing, so they switched me to a silver cream to try to speed up my tushie healing process.  I was going to comment on how I have a silver plated rear and how I hope it doesn't get stolen or something dumb like that, but time for jesting is over.  We were just going to wait and follow up in 3 weeks and hope for the best in the meantime.  As usual, my lovely body had other plans.

Friday I went to see a caterer with whom I've worked, had lunch there, helped out a bit in the kitchen.  I had a fabulous time out of the house for the day and really enjoyed being behind a knife and prep table.  As a thanks, he fed me an amazing calamari salad for lunch and sent me home with some food for dinner, 4 gourmet soups, thai noodle salad (that I helped make), moroccan couscous, and a huge loaf of freshly baked still warm bread.  It was a good day.  My parents and I ate, cleaned up, and I got ready for bed in anticipation of going to see my aunt for an overnight (Saturday to Sunday).  But....yeah...

I woke up Saturday morning feeling fine as always, went potty, and flipped out.  I had stool coming out of my vaginal area.  Ummm, in case you don't realize, I HAVE NO RECTUM.  This means most likely I have a fistula connecting my uterus to my small intestine.  Awesome.  I flipped and called Dr. Lee immediately, especially since I had just been up there not 2 days prior.  He recommended I eat very little and drink very little and to see him first thing Monday morning at his office, which I will happily do.  I'm actually eating nothing (think self imposed colonoscopy prep without the laxative) and sticking strictly to clear liquids.  I don't want any matter going through my intestine that may put pressure on a fistula and possibly cause leakage into my gut.  So all day yesterday and all day today I'm on water, Stewart's half and half (iced tea lemonade mix), and whatever else I want to drink that's clear, and I'll be seeing Dr. Lee tomorrow morning asap.

What we're all assuming is a fistula.  I'm hoping (but will probably not be so lucky) that he can do a dye test to diagnose it and not a barium swallow.  I hate barium, especially on a totally empty stomach of two days, not to mention the amout of pressure it causes inside.  Because fistulas don't fix themselves, at least to the best of my research and knowledge, this probably means surgery, probably Tuesday.  Oh joy.  So I'm intending on bringing my laptop with me this time and blogging from the hospital, morphine and all.  And as soon as I find out tomorrow just what my body has done to itself this time, I'll update on the specifics of what, where, and why. 

Prayers are appreciated, but most importantly for my parents and surgeon.  I can't believe we are all going through this again.  AGAIN.  I swear, they should have a frequent surgery program club card at Albany Med.  Wouldn't that be nice, have 4 surgeries, get a vacation on them for when you're healed up.  Maybe I should suggest that on their comment cards....never know....

Signing off for now and packing my surgical/hospital bag.  Will keep you posted when I know more. 

Love ya,

B

  

slightly less leaky heine....

Had yet another surgical follow up 8/30 with Dr. Lee.  Based on our previous experiences, he was very hesitant to enter the room for fear of my impending doom yet again.  Boy, was he surprised to see a partial smile on my face.  First time since before surgery in February.

After examination, he basically said that my heine looks like it's closed up a little bit, but still is nowhere near totally healed.  He mentioned that surgery is still a definite possibility at this point, but it's not so urgent it can't wait until I'm a little less crazy with life and work. 

Fingers crossed that the heine continues to heal up and surgery won't be needed. Will keep you posted in a month when I go back for yet another follow up.

Love ya,

B