Showing posts with label Infection. Show all posts
Showing posts with label Infection. Show all posts

Friday, July 20, 2012

P.G. With No Baby

I've been told  many, many times that "whatever is wrong is self inflicted" in reference to my leg.  And I've been assured that it definitely couldn't hurt as much as I say it hurts.  I've been told I'm not sick, that there's no physical reason for the symptoms I battle daily.

But recently, that's all changed.  My doc believes in me and has fought to help me heal, and has endured the highs and lows as my leg gets better and worse unpredictably.  And finally, there's a word for what I am fighting.  Two words, actually.  Pyoderma gangrenosum.  Look it up if you want, but be warned that most articles include graphic and rather unappealing pictures.  Basically, it means my body attacks itself from the inside out (so in that regard, I suppose you could call it self-inflicted).  It favors previously damaged skin, but I have no control over when or where or how badly it will do so.  When it flares, my skin first turns red, then warm and spongy, then blisters, then peels and rapidly erodes  until I have ulcers muscle-deep and usually bigger than a silver dollar.  It is excruciatingly painful - far more so than it should be given the wounds themselves.  It has coupled with a disturbing lack of immune response to allow infection after infection to form, for which I am almost daily at the clinic receiving treatment. 

Now, that said, I'm not trying to whine.  I honestly have a beautiful life, made that way by a faithful God.  It's just that people often wonder what it is that is actually wrong with me - what keeps me so sick so much of the time.  And this is certainly not the only problem, but it is a big one.  One I'll overcome.  And when I do, God will get the glory because it will be by His grace.

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Sunday, May 20, 2012

Leg Time

1st Peter 2:24:
Who His own self [meaning Christ] bore our sins in His own body on the cross, so that we, being dead to sin, should live righteously:  By His stripes you were healed.

Healed.  It is with joy and excitement and hope and thanksgiving that I speak that word.  Healed.

For years, I attacked my own body.  I kept it hidden from most of the world, but not from the doctors who worked so hard to help me heal from those attacks.  I received compassionate, skilled medical care; many who admit to self injury are not so fortunate.

But medicine and time can only heal so much.

My right leg has been hurt quite badly, many times.  A few years back, it caught up to me.  Requiring yet another set of sutures landed me in the hospital.  Hospitals are good places to go if you are sick.  Hospitals are also good places to go if one wishes to be exposed to a plethora of hurtful bacteria.  My leg got infected, and for the first time in my life, the medical care I received was sub-par.  It festered and deteriorated for months before I had the first of too many emergency procedures.  At that time, it was found that the years of injury had caused significant vascular impairment.  In other words, you can only wreck so many arteries (big and small) before your foot simply doesn't get enough blood.  Because of the circulation problems and the effects of stress on my immune system and the unfortunate combination of resistant bacteria, it has been a rocky road since then.  I have spent more days either in a walking boot or on crutches, than I have spent walking normally.  I've got very limited sensation.  Lasting muscle weakness.  Pain, all the time.  And when stuff happens - little stuff, like a scuff on my heal from the stairs or a scratch from one of the cats - it doesn't heal like it should.  It can't. 

Last fall, things cascaded downhill really quickly. 

I am proud to say, though, that I have not done anything to deliberately harm myself in any way since the beginning of 2010.  I've been taking care of my body; seeing it as a gift from God.  It has been a fight.  A difficult, frustrating fight that has been worth it every second of the way. 

But it is in my medical record that I used to hurt myself, deliberately.  Every time a professional has entered the picture to try to help with my leg, it has been assumed b y them that I am still doing things to hurt myself.  It's led to ineffective and unprofessional treatment.

I am now three months into a process of trying to heal the ulcers that broke through the surface of my skin graft and proceeded to worsen and deepen for weeks as wound care specialists treated me for infection.  Infection that isn't present.  And it has been three and a half weeks of daily (yes, every day) appointments with my family doctor.  Three and a half weeks of finally having someone acknowledge that this is not something within my control, and it is not something I have caused.  Three and a half weeks of compassion and the best medical care that my doctor and the nurses working with him can provide. 
And healing is happening.  All the fancy solutions and ointments have been abandoned in favor of simplicity.  Pain relief has been not only provided but encouraged.  Nobody is wasting time trying to place blame.  And the wound that physically should not be able to do so, is healing.  Rapidly and well.  Skin is growing where skin can't grow.  I am completely without signs of systemic infection, and there is also no evidence of bacterial colonization.  Some of the defects that were present even after reconstruction and grafting surgeries have been filled in with healthy tissue.

It is nothing short of amazing.  Even miraculous.

And instead of a future full of continuous appointments and frustration and pain, there is an end in sight.  The day is not so far off when I will be able to leave the clinic and know that I don't have to go back any time soon.  Don't get me wrong; my doctor and the nurses and even the receptionists are wonderful people.  People I care about, people who are uplifting and kind, who are the sort of people I would choose to spend time with simply for the sake of their company.  It's just that the daily appointments, the constant need for said appointments, and the amount of energy, time, and attention being devoted to me, feels suffocating.  I'm the sort of person that prefers to fly under the radar.  Solitude doesn't feel lonely to me - it feels peaceful.  There are times when I am not sure what I look forward to more - being healed or the simple reality of not needing and not receiving this sort of intervention every day. 

Eventually though, I will be well enough to just pack a bag and go stay with my dad and family without having to worry about making it to my next appointment.  Eventually, my time and energy will be put into something more, something better.  Eventually, I  won't require so much as an Advil or Tylenol for pain relief, let alone narcotics.  Eventually, I'll walk into that clinic on two feet with no crutches in my hands, and I will undergo the recommended yearly physical exam, and there won't be any problems.  I'll smile at the nice people and walk back out the door.

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Tuesday, December 20, 2011

Prayer Request

So, I have a prayer request for you... my faithful readers.

Can you pray for me?  For complete recovery, both physical and mental/emotional?

The physical recovery has slowed down considerably.  I am still moving the right direction, but there is also still a lot of pain each day, and not just in my leg.  I have a very sore back and ribs from the fall, and some internal pain, as well as feeling similar to having the flu (aches and pains randomly coming and going in various muscles and joints).  Also, the scar from my central line is still very sensitive.  As far as my leg, I had what I hope was my last silver-nitrate treatment yesterday.  The silver nitrate is used to "burn" away some of the granulation tissue, since it has been inflamed and tending to grow higher than the edges of the wound.  I believe things will be closed up in another two weeks or so, and then it's a waiting game to see if the scar will need surgical attention.  I am really trying to limit the amount of hydrocodone I take for pain, but it is hard right now.  Just the simple act of walking is painful enough to make me nauseous.  But after six weeks on crutches, I'm just thankful to be on my own two feet.

That brings me to the second half of my request.  When I was still in the hospital, there wasn't any room or time to be very upset about what was happening.  I was confused and a little angry and scared, but so much of the focus was on the moment to moment task of trying to recover.  As time has gone by though, and my body slowly rebuilds, I have been struggling emotionally.  I have tried not to make a big deal of it, but that Monday that I got very sick, I genuinely believed I was dying... and so did most of the medical professionals caring for me.  It was terrifying then, and now that my head is clear and I'm fully conscious, it's even more terrifying.  I don't have a solid answer, and never will, about what exactly caused the sepsis.  While my blood culture did reveal the same bacteria that was grown from each of the four abscesses they operated on, there was nothing about the day in question that should have sent things spiraling so out of control.  That's the scary part.  I keep saying it will never happen again... but how do I know?  If I don't know how or why it happened to start with, how do I prevent it in the future? 

I have actually been having nightmares and things that could almost be described as "flashbacks" about that day.  About laying there with my feet up in the air (I was tilted about 30-35 degrees, head down).  About the agony of the central line going in (no sedation, no local anesthetic because of being too unstable, and everything already really hurt), about the far more intense pain involved with opening up the abscess in ICU, where the lidocaine did nothing because the tissue was too inflamed.  About laying on the CT table and feeling sheer terror as my lungs felt like a hose was letting water fill them, and about the exhaustion that I felt by morning after struggling so hard to just breathe, for so long. 

About the looks on the faces of those I loved.  Especially about that.

So if you could pray that peace would replace the fear and that good memories would replace the bad, and if you could pray for continued healing and the restoration of sound health, I would be very, very thankful.

Thank you everyone.  May you have a very blessed and beautiful Christmas!

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Thursday, December 1, 2011

I'm Alive

Alrighty then.  Sunday, November 27th, I felt FINE.  My leg was sore and looking icky, but the surgeon had SEEN it looking icky and didn't seem worried.  My husband and I spent the night talking and watching a few episodes online and then did some snuggling.  About four thirty, I went to sleep out on the couch, because it hurts my leg like crazy to be touched.  At six AM, I woke up and started throwing up more violently, and with more... substance... than I thought a person possibly could.  It lasted about ten minutes.  Derek helped me get cleaned up and then I went back to sleep, for about fifteen minutes.  I woke up again, feeling like I needed the bathroom - I knew things were going to come out both ends.  I stood up, and could hear blood rushing in my ears and feel my heart pounding.  I took about eight steps - enough to get me into the bedroom, next to the night stand.  Everything went black with sparkling lights, and I felt my body crumple, bouncing off the nightstand.  I heard myself vomiting... and then it was blissful, black, silence.

This part, is just what I've been told.  The ambulance was called, and I was loaded up into their stair-chair. 

Halfway down our stairs, I woke to someone digging their knuckle into my ribs and saying "Jenn, look at me.  Look me in the eyes."  I wanted to do so, wanted to be the obedient patient... but I could not see a thing.  Nothing.  Just blackness.  Then, silence. 

The next thing I remember is waking up with a paramedic on each side of me stabbing my arms.  They wanted to get an IV started, desperately, and so both were trying.  After many, many tries, Grumpy Lady finally got one in.  Nice Man retreated to the front to take me to the Little City hospital because I was so unstable.  Blood pressure was 48/25.  They put my feet way above my head and started pouring in fluids - heated fluids.  My temperature was 102.  Half way to the Little City Hospital, my vision cleared and I was able to start speaking.  When we got there, they had to put the stretcher flat to move me, and everything went black and quiet again.

By the time we left Little City Hospital to go to the Bigger City Hospital, my temperature was 104.8, my BP was only up to 60/30, and I'd had three liters of fluid.  As soon as they put me back in the ambulance, they angled my feet way up and I was awake again.  Each trip to flatness knocked me out as effectively as a hammer to the head would have.  On the way to the Bigger City, I started realizing just how sick I was.  I could feel different organs beginning to hurt - really hurt, like they were caught in clamps.  First was up under my ribs on the right.  Then it was all up and down my left side, too.  Then it was as if I'd been punched in the right kidney... the left followed a few minutes later.  I threw up again, and I could feel the sore spot on my ribs where I'd hit the nightstand.  I could also feel the scuff on the end of my chin where I'd hit... something.  My head started to pound loudly with every heart beat and was throbbing with pain.  My vision was coming and going.

I faded into nothingness again when they put the stretcher flat to wheel me into the emergency room.  I woke up on their bed with my feet way higher than my head was.  I had an IV in each arm and I was mumbling to Derek about who he should call.  Then they kicked him out, and drew blood cultures and ran two and a half more liters of fluid - putting my total up to 6 in 2 hours.  My BP stubbornly stayed down at 60/30, and my heart rate was steadily climbing.  My temperature was 105.  Blood work showed kidney and liver problems as well as the presence of extra-large platelets, which were clotting off and getting in the way of things.

Someone said "We need to get a central line in her."  Someone else said "We can't.  She can't be sedated right now.  Not at all.  And she's so feverish that lidocaine wouldn't be terribly effective."  "Well, we'll just do it right here.  Clear everyone else out."

And they did.  Not fun.  Not fun at ALL.  I get why people get sedated for it... I'd have given anything for some nitrous or even just some pain relief.  Halfway through, I hollered that they were hurting my neck, and the assured me that wasn't possible.  They got the line in, did a chest x-ray which showed fluid on my lungs and a central line that had flipped and gone up into my neck.  They needed to start the medications for my heart though, so they let it slide momentarily.  They came in and did an ultrasound to check blood flow in my major organs, and then I got an injection of something to break up clots.  Then things got quiet for a while, while they waited for the heart and blood pressure meds to start working.  My husband and my best friend both came in and were there.

I was so convinced that I was dying, that it took everything I had to resist the urge to say "Goodbye" to them.  Alarms were constantly going off.  We were just waiting around to get me down for a CT of my leg.



My friend came in, and held my hand and offered comfort and kept me from killing the surgeon, as the surgeon operated on my leg right there in my room.  There was no option for sedation, as I was far too sick and my lungs, especially, would have failed under anesthesia.  Because of how sick I was and how infected my leg was, the lidocaine was... useless.  Hurt like crazy going in, and offered no numbing effect at all.  He finished and packed a bunch of gauze into my leg, and then a different surgeon came in.  My friend left, and the new surgeon said "I'm here to re-do your central line" and I LOST.IT.  I was DONE.  I psyched myself up for this horrible repeat of earlier... instead, she put a wire through one of the catheters to hold her place in the artery, pulled the old line, threaded the new one over the wire, I felt a bunch of pressure, and then this crazy tickling sensation by my heart.  The next chest xray showed lungs even more filled with fluid, but the central line was in the right place.  It felt good to not get a burning, full feeling in my neck every time they gave an IV injection.

Respiratory therapy came up and did a breathing treatment to help get rid of the fluid...

and that's how I spent the night.  Nurses constantly doing things, monitors beeping and alarms grating and beginning to wonder if I had enough drugs in me to compensate for embalming procedures.  Yes, I still thought I was probably going to die.  My feet were still over my head and I still felt absolutely horrible.

About 24 hours after being admitted though, things started turning around... faster and faster and faster.  I even got a PCA for the leg pain (couldn't have it before because I was too sick).  I was getting a lot of heparin shots, and there were never fewer than five IV bags hanging and dripping various things into my central line.  And every 30 minutes someone would come in with yet another syringe full of medication for me.

By Thursday afternoon, I was well enough that the doctor said "Okay, you may as well go home."

That kind of recovery, after that kind of sick, is nothing short of miraculous in my book.  I have found out since then, that the doctors were quite certain I would not make it through the first night. 

To GOD be the glory - I want to go to heaven, but I don't want to go so soon that it tears at the hearts of those I love.

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Sunday, November 20, 2011

WOW.

So I actually DO have a reason for having neglected this blog so thoroughly.

Starting mid-September, my leg (the one that had the graft in May of 2010) started hurting more than usual, and getting more warm and swollen.  I had xrays and blood tests and even a bone scan.  Nothing indicated an infection of the bone, but nothing was entirely "normal" either.  We were in the middle of investigating possible causes, while I fought increasing pain.  The following bullet list is a short summary of what transpired after the bone scan.

  • Sunday, 10/30/2011
    At some point before this, I acquired a small, innocuous looking scratch on my graft, close to the edge that is stuck to the front of my tibia.  It didn't hurt, didn't look infected, didn't cause a fever... and I have no idea where or when or how I got it, because I can't FEEL the skin where the graft is.  Not sharp pain, that is.  I can feel pressure, sure, and heat, but no sharp sensations.  On Sunday, Derek and I noted and commented on the scratch and what appeared to be a bruise beneath it.  Just a little pink, and a little warm.  I already had an appointment scheduled for Monday, to discuss pain control options.

  • Monday, 10/31/2011
    By Monday morning, my shin was huge and hot and red, I felt like I'd been run over by a Mac Truck, I had a fever, and was genuinely sick.  Sick enough that after drawing cultures and other labs, my doctor tucked me into an ambulance and sent me away to the City.  By this point, every breath made my leg feel like it was being smashed.  I was in tears, shaking and sweating.  I will pause here to say this:  Whoever decided that paramedics can start IV's and administer Fentanyl at their discretion... they are something along the lines of "hero" to me.

    We got to the Hospital, and I was taken straight to a room.  NO ER, no triage, nothing.  Just up to a room.  More cultures were drawn, another IV line was started, and a circle was drawn on my leg marking the edges of the red, swollen, hot skin.  I was then sent for an X-Ray, which I assumed would come back normal - the last one had.  But no, it did NOT.  It showed fluid and air building up in the deeper tissues, indicative of a fast-moving infection.

    Then I met my surgeon, Dr. J.  I had him and his resident assigned to me, another surgeon, Dr. A, as well as Dr. M, Dr. C, Dr. M and Dr. F, plus their interns.  It was a herd.  I wish it could have all been done by just one person.  Less intrusive that way.

    7:30 that night I was in surgery.  The operation went fast.  They didn't have to remove anything terribly important, and left the incision (about 6 inches long) open and packed.  I woke up in recover at about 9:00 and I swear, I had NEVER been so miserable in my life.  My temp was up over 104, I was pouring sweat, covered in goosebumps, shivering so hard it was more like convulsions, crying so hard, throwing up, and my leg felt like a combination of fire and being crushed, more intensely than I could comprehend.  It was almost midnight before I was in good enough shape to see my hubby.  They said I was septic, and that's why I was so miserable.  I had a great night nurse who kept my double room just for me, and took care of me so well.  Next morning my roommate arrived and I could. not. do. it.

    I don't like PTSD.  I don't like that an other's simple presence when I'm not feeling well or perceive that I am vulnerable, is enough to send me into full-on flashbacks and panic attacks and terror and my brain goes into lock down mode.  There is no reasoning to make it stop, there's no gentle tones or persuasive words.  I spazz out in a world-class manner.  So my good ol' nurse got me moved to a private room in a different unit.  The staff THERE were great too.

  • Tuesday, 11/1/2011Tuesday morning, I found out that I was now on Vancomyacin, Rocephin, merepenem, and flagyl.  And I got my PCA pump.  Oh that wonderful device with the stupid nose flap.  Hospital brought me in a laptop to use... mostly it just sat there playing music or shows off of Hulu.    That afternoon, I went back into surgery for more debridement and dressing change.  Late that night, I was taken to a procedure room and sedated for a dressing change.

  • Wednesday, 11/2/2011 I continued to complain of pain on the inside of my shin bone - not where the abscess was.  And in my ankle.  It kept getting dismissed.  Temp was staying mostly normal.  They told us the organism was susceptible to the meds I was getting (e. Coli - and NO, I don't know how anyone gets e. coli in their leg, but apparently it's not as far fetched as I thought).  I pointed out a second area of possible infection.  They agreed.

    They wanted to unpack, debride, use pressurized water to cleans, and then repack my wound.  And I flipped again.  NO WAY.  Not with me awake!!!  They ran around and around with me about it, until Dr. J finally asked what the real problem was.  I explained the flashback it was conjuring.  And from then forward, it was sleep-city.

  • Thursday, 11/3/2011 Thursday morning, I went to a procedure room and was given conscious sedation for my dressing change.  I kept complaining about the area near my tibia that hurt, so they ordered an ultrasound to look for free fluid... and boy howdy, did they find it.  Nice little abscess under the skin but mostly fluid buildup around the bone.  The took me to the OR, knocked me out completely, did a needle aspiration on the new abscess and tried to get the deeper fluid, and then aggressively cleaned the initial incision and performed a delayed closure.  They left a lot of drain tubing in place.

  • Friday, 11/4/2011 Was still on the Fentanyl PCA.  Dr. M wanted me to go home... I knew I wasn't ready.  Dr. F, from infectious disease made a plan with my husband - I would go 24 hours with IV fluids but all meds would be oral, unless things escalated, before I would be allowed home.  Surgery liked the plan, but said we should wait till Sunday, so they could pull the drain before I left.  So we left THAT as our plan.

  • Saturday, 11/5/2011 1/2 of the drain was removed.  I was taught how to do my own dressing changes, shown what to watch for.  There was some iffy blood work, but they decided it was contaminated by skin, not by actual blood-borne pathogens.  I was off the PCA.  Miserable, but off the pump and ready to go.

  • Sunday, 11/6/2011 Sunday, they pulled the rest of the drain, said what to watch for, how to care for things.  At that time, a secondary abscess just medial of my tibia was noted.  It was felt to be small enough that antibiotics alone would address the problem.  After much waiting around, I got to LEAVE.  To go to MY HOME.

  • Monday, 11/7/2011 I did my dressing change as ordered - I even filmed it for documentation. The rest of the day, I spent sleeping.

  • Tuesday, 11/8/2011
    Because I was uncomfortable waiting a week to see my surgeon for a recheck, my family doc agreed to take a look.  He did so, and called the surgeon.  They had me go NPO immediately in preparation for seeing the surgeon on Wednesday.

    Unfortunately, that night, I took a shower.  My first since the surgery.  They had finally given permission and it felt SO SOOO GOOD.  A sponge bath just can't even compare.  About 7:50 PM I was all relaxed and sleepy and fell asleep on the couch.  I woke up screaming at the TOP of my lungs at 8:05.  My head was the WORST pain I can imagine.  Searing and pressure and throbbing with my heart beat and made worse by sound and light and trying to lay flat and turning my head or moving or coughing or talking.I was screaming too much to call 911, and my husband was at work.  They got there though.  I rode lights and sirens (and lots of IV meds pushed and some crazy EKG monitors - finally a nicely documented run of SVT). 

    Doctors started talking meningitis, encephalitis, and big scary bad words.

    They still don't know what caused it.  Spinal fluid came back indicative of SOMETHING, but non-specific.  CT didn't show any large abnormalities.  So I got me a room with a room mate and the pain and the PTSD fed off each other until they ended up moving me up to the cardio floor, into the only private room left in the hospital. 

    They had me on Vanc, Rocephin, and Merepenim.  They switched the Rocephin to Timentin, and the merepenim to Erdepenim.  They also added in Acyclovir.  I had to have two lines again, because the meds couldn't mix together outside the body.

  • Wednesday, 11/9/2011
    Finally, things under control enough that I SLEPT.  And SLEPT.  And then SLEPT some more.

  • Thursday, 11/10/2011 Home sweet home.

  • Wednesday, 11/16/2011 Recheck with the surgeon.  He informed me I needed my secondary abscess drained.  He recommended a standard I&D, under anesthesia.  I consented, and planned for Thursday to be a nightmare.

  • Thursday, 11/17/2011 So much for a nightmare.  The day went well.  Operation was really fast and smooth, recovery was smooth, they are hopeful that maybe this could be my last trip to the OR for this problem.
     
  • The weekend went well, but the defect was growing worse.  And today, my surgeon has prescribed honey.  Like from bees.  That's what I put in the wound.  I thought he was crazy.  But it turns out it's more widely known than I thought.
So THAT, is where I've been.  If folks have an interest, I'll put together a picture tour similar to what I did with my hand for you all that time.  But right now?  I am going to SLEEP.

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Friday, February 18, 2011

Chronology of an Owie

In pictures, here is what my hand has done over the last three weeks.  This is all the result of having blood drawn from one of the veins in my hand for a routine test.  It formed a clot and for whatever reason, the clot didn't dissolve.  Over time, the bacteria introduced by the blood draw multiplied and formed an abcess inside the vein.  They then spread to surrounding tissue, including my skin.  Officially, it is septic thrombophlebitis.  The two pictures that are NOT of my hand mark the start of each hospitalization.  One showing the three IV bags and PCA meds I had, one showing the goofiness of my doctor and his and my mutual friend. 

The pictures are low quality because they are all from my cell phone.

This post is brought to you in response to some requests I've gotten.



















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3 Times Crazy

Third admission is behind me.  If there is a fourth, it will be in a city about two hours from here, a city filled with world-famous really good doctors.

The last admission went badly from the moment we walked in to the emergency room.  Strike that, it went badly in the hours prior, too.  Lots of anger and fear and irrational outbursting on my part.  Plus going into shock, which involved six blankets in a 70 degree building, with one of the stronger space heaters I've ever "known" blasting full-tilt in my face while I still got colder and colder and colder (my temp in the ER was under 96).  And me whining about the cold and the fact that the heater "didn't work."  And a spectacular and very mis-placed, poorly timed, and inappropriate display of anger. 

In the ER, we found out that the orthopedics doctor on call was the one that I would never let touch me, ever.  Not even with a ten-foot spaghetti noodle.  She wanted to attempt to aspirate the fluid out of every joint that was swollen, to make sure it wasn't infected.  That means nine joints on one hand.  Nuh-uh no way, not a chance.  Stab through skin and the deeper tissue that we already know is infected and full of bacteria, and into joints that may or may not be infected?  Many times over?  No way.  Especially not her.  We told her that - including the not her part.  She yelled.  Derek yelled.  The ER doc yelled.  I yelled.  She refused to call a hand specialist (she most definitely is NOT) because "they work all day and have lives, too."  The ER doc refused to call because she did.  He refused to call my regular doctor.  Refused to allow us to have a second opinion.

They took me to a room that, well... let me just say it triggered some massively bad memories.  Bad enough that I cried and vomited uncontrollably for the two hours we sat in it.  With grumbling and "harrumphing" from the nurses on the floor they then moved me to, it was off to a different floor, different unit, different room.  I refused to "make a decision" about the aspiration until after the timeline the surgeon set forth, since she had to go home because a full day of surgery awaited the next morning.  Score.  If she was in surgery, I wouldn't have HER anywhere near me with a needle, right?

Not so right.  I consented at about 10:15 PM, too late for the night and I knew it.  But that consent kept me from having to sign an AMA form.

The next morning at 6 AM, my nurse mentioned that this doctor would be in to talk to me about the aspiration and figure out when she could squeeze it into her schedule.  Ahem.  This is not what I planned.  So I told the nurse that I was refusing to see the doctor, at all.  That she could not touch me or have contact for the remainder of the stay.  The nurse said that since I was admitted under that doc, I couldn't get rid of her completely.  And I said I didn't care if she managed things from afar, so long as she didn't get near me.

They informed me later in the morning that I'd be going to interventional radiology, and the radiologist would be doing the aspiration - of one joint.  Seemed much more reasonable, but I've had needles in joints before and knew it would hurt.  Probably a lot, given the amount of inflammation.

My regular doctor came up to see me.  I was freaking out about the procedure for reasons only partly related to the procedure (this is one of those deliberate withholding of information things).  He stayed with me.  Tried to get me to squeeze his hand.  I don't squeeze hands in pain.  Especially hands of people I don't want to hurt.  The procedure itself didn't hurt terribly.  Meaning it didn't make me scream or cry or pull my arm away.  No, they didn't have it restrained in any way.  Just draped and laying on a foam thing.  The grating sound followed by a crunch was the worst, both audibly and feeling-wise.  It was when he was pushing through the joint capsule.  The capsule is very, very inflamed - it looks kind of cool on ultrasound, actually.  Fluid came back clear initially, but the bacteria in my hand are gram-negative so they don't pick up a gram stain.  The culture was taken Wednesday, and since day 5 is Sunday, won't actually be checked until Monday. 

They discharged me yesterday.  Said if the culture grows anything, then they'll call me and I'll have to be readmitted for I.V. antibiotics for a week.  Again.  Meanwhile, that joint is so big and hard and massively swollen and hot, as are the two next to it and the one above it.  The redness on my hand is accented quite well by the purple marker they used to mark the edges (which have expanded well past the marker). 
As I told my doctor when he said "just hold on a while longer, Jenn," - I am all done.  I am out of hold on.  I am out of gritting my teeth and tolerating.  I am out of being patient.  I am all done.  All done.  Maybe in the next couple days I'll get some fight back, but for today, I just don't have any left.

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Monday, February 14, 2011

Wow.

Sorry to have left you all hanging.

I stayed home from the hospital for ALMOST 36 hours.  Almost.

When I was readmitted, my temp had gone from 96.8 when I was discharged to 103.9 when I showed up back in the emergency room.  Seven degrees doesn't matter much in weather but inside a human body, it's a really big deal.  Hot stuff. 

Okay, that was across the lame line.  But it made you either smirk or groan, right?

Reality is, I first mentioned my hand to a nurse at the end of December.  I had the fertility doctor check it on January 5th.

I made my first trip to urgent care on January 12th.  No labs were drawn and the only advice was "use lots of heat.  If it weren't for your leg, I'd say this wasn't infected at all.  But it looks similar to how that did, so I'm going to prescribe this particular antibiotic for you for seven days."  I dutifully soaked my hand many times a day, making sure to move it and use it and get it good and toasty.

Nine days later, on the 21st, I was back in the ER with a temp of 100.9 (normally run 96.5-96.8) and my hand looked... rough.  Bad.  Not so good.  Swollen and red and pretty sore.  I had thought I was getting the flu Wednesday night (24 hours after the last dose of antibiotics), and it proceeded to worsen along with the appearance of my hand.  That doctor said that since the first course of antibiotics worked so well (It did?  Really?  How'd I miss that?) he thought I must be one of those "rare people where seven days isn't long enough" and he was going to prescribe the exact same medicine, at the exact same dose, but this time for ten days.  He said that if the heat helped, I should continue it but it didn't really matter.

My husband and I both felt very uncomfortable with the hasty exam (more just a glance than actual exam), the lack of blood work, and the lack of follow up.  Especially since at that point my hand was acting exactly the same as my leg did last year - and the doctor was acting exactly the same as the doctors did last year.  We kept insisting we were uncomfortable and the doctor got more and more irritated, until he finally offered a referral to the wound clinic.  We knew that the 48 hours until I'd be able to see them (if seen immediately) could see things go south really quickly, but at least we also knew that the wound clinic is home to a bunch of very smart, talented, experienced infectious disease doctors and surgeons.

Wound clinic called Monday morning, offering me an appointment less than 30 minutes later.  It's a 40 minute trip in this weather, minimum.  I asked for a later appointment and was put off until the next afternoon.  That night, I did not sleep.  I used heat, I tried ice, I tried compression, I took Advil, I took Zofran, I took Vicodin 7.5 (two of them).  I finally fell asleep at 7:30 A.M.  I slept until noon, and when I woke up I knew I would be admitted.  For what started out as a simple skin infection of the hand, and even Friday night, could have been handled on an outpatient basis if it had been done correctly.  But now my hand was so swollen that it looked fake.  The skin was shiny and tight and deep, dark red.  It was very hot to touch, and I could no longer move my pinkie, ring, or middle fingers.  The pinkie and outside edge of the ring finger were numb.  And I felt generally sick.  Achy, sweats, chills, fever jumping between 99 and 102.9, unable to keep anything down.  I packed some books and clean underwear and socks and a stocking cap along with my favorite pillow, and off I went to the wound clinic.  My appointment was at 2 PM, my blood was drawn and x-rays taken by 2:30, husband got there at 3:00 just in time to watch the orthopedics consult jab an insanely large, thick needle into my hand in an effort to "aspirate" the pus.  By 4:00 I was getting settled into my room and waiting for IV therapy to come get things started.  After five days of high-dose Rocephin and Vancomyacin, with a Fentanyl PCA pump and frequent IV Zofran, I was sent home with Bactrim, Vicodin, Zofran, and Neurontin for the pain in my now-damaged nerves.  I'd been seen by infectious disease, orthopedics, plain internal medicine, neurology, OT and PT, an intensivist, and about a million interns and 500,000 residents. 

I was thrilled to be going home.  Finally, healing and doing well.

I lasted from Saturday afternoon until Monday morning.

When I was readmitted, my hand was blowing back up, I now had no sensation or reflexes below the wrist in my ulnar nerve and limited sensation and reflexes in the others, and my temperature went from 101 when we left home to 103.9 when the admitting nurse took my temperature. 

More Vancomyacin and Rocephin, more Vicodin ans Neurontin, more days on the Fentanyl PCA pump, More Zofran, more doctors, and an operation to remove the abscessed vein (yes, apparently a not-quite-sterile blood draw can lead to the development of not only phlebitis and cellulitis, but also abscesses inside of your veins) and the necrotic (i.e. dead) tissue that was around it, and I was sent home.  After finding out that the infection I was fighting was directly linked with human saliva.  Eeeeewwww.  There is only one person who could have introduced the germs, and that is the technician who drew my blood in December when all of this started.  I was actually asked this past week, by one of the infectious disease doctors, if this infection was self-inflicted.  Um... no flipping way. Besides, how would I have done it?  "Excuse me, Ms. Lab Tech person, before you stab my hand with that needle, would you mind letting me lick it first?"  Seems unlikely.

Now here I am, halfway through February and two months out from the original offending blood draw, and I am struggling hard to stay out of the hospital.  Three admissions might just send me over the deep end.  Well, not so much the admissions... it's the need for the admissions and the fact that this can all be traced to one person and the fact that we aren't ever going to even be apologized to for any of it, plus the fact that I have long-term, likely permanent, damage and loss of function in a previously healthy hand.

I know, I'll let go of the anger and sadness, and I will learn ways of making my hand do what I need it to do, but right now, tonight, I am so very ticked.

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Saturday, January 29, 2011

MRSA

So, the hand?

It was MRSA.

It snowballed, big time.  It got worse throughout the day on Friday the 21st.  Went to the ER that night when Derek got home from work.

The doctor frustrated me... not because he was a bad doctor, but because he didn't listen to what I was saying.  He felt a second course of antibiotics was the best choice.  That is pretty standard when an infection recurs.  He also felt that since the first course did impact it, he'd use the same kind again.  I disagreed, but he is the doctor, not me.  I repeatedly voiced my concern that this was eerily similar to the progression my leg initially followed this past spring, but he assured me this was very different.  However, he did refer me to the wound clinic.

Monday, things were not any better but hadn't worsened drastically, either.  Talked to my doctor, told him how I felt, and he told me I needed to be seen that day.  I told him they'd refused to work me in until Tuesday.  He called them, and then called me and said that the infectious disease doctors said it would be fine to wait.  He told me to go in if things got worse quickly or significantly. 

Overnight Monday, my fever went back up to 102.3, which is not the 103.9 that it had been.  I didn't sleep at all, until about 4:30 or 5:00 AM.  I slept through until noon, then got up to get ready to go to the wound clinic.  I freaked out when I looked at my hand - it had grown a lot in the 7.5 hours or so I'd been sleeping, and I felt super crummy.  I knew they'd probably admit me or at least run a dose of IV antibiotics, so I brought my backpack with my phone and charger, my favorite pillow, and books to read.

The doctor initially seemed very calm - rude, but calm.  He sent me for blood work and x-rays - I've never walked into the lab with red-edged orders before.  It gets you to the front of the line.  (Note to self - if ever in a hurry, bring a red sharpie for lab appointments.  Kidding.  Mostly.)  In the 30 minutes it took to do those things, the redness visibly darkened and the swelling increased.

My appointment was at 2:00.  At 4:00, I was getting settled into my hospital bed after having seen the infectious disease doctor and the orthopedic/hand surgeon and having had really big, long, painful needles jabbed into my hand in an attempt to aspirate "infectious matter" for pressure relief and culture.

It got worse throughout the evening Tuesday.  Wednesday, the put me on a PCA pump (pain control) with fentanyl, and I was getting pushes of tordal and taking hydrocodone by mouth.  My hand was so swollen that the skin started getting dark red lines where it was starting to tear.  My temperature was fluctuating up to 103.  They had me on rocephin and vancomyacin.  Plus the zofran and benadryl and pepcid to control the effects of the vanc. 

Yesterday, things started to pick up pace improvement-wise, but the pain changed and worsened - the smaller my hand got as the swelling went down (and the bigger my forearm and elbow got as they continued to sell), the worse it hurt.  The doctor on call was a fairly new resident, who insisted that there was no reason for the pain and chose to discontinue the PCA pump and cut the amount of pain-relievers down to 1/16th of what I'd been getting right up until she made rounds.  Talk about a loooooong night.

This morning, the regular attending came in, took one look, and got me some hefty doses of the meds I'd been given previously, and they didn't really help.  I saw my hopes of going home slipping out the window, and slipping fast.

Neurology came in and found that my ulnar nerve is very displeased with all that's gone on and has ceased proper function starting just above my wrist.  I was told it will recover, but it'll take "up to two months."  Two months... I can handle two months.  I don't like two months, but it's better than forever.  Besides, I have a God who is bigger than one tiny little nerve.  And they gave me... something... for which I can't remember the name.  It's a medication that was made to treat seizures, but didn't work for that, but someone noticed that in people with nerve damage, it really helps that sort of pain.  That medicine, paired up with hydrocodone and ibuprofen (and zofran) got things under control.  I went to occupational therapy, got to sit with my arm in a whirlpool and then get a thorough massage, and then they gave in and let me go HOME.

It feels so good to be here, in my house with my cats and ready to crawl into my very own bed

And it turns out, the infection was MRSA.  I've got five more days of oral antibiotics and then in a week I follow up with infectious disease.

Moral of the story?  Apparently, it's that you should go to the hospital every time a blood draw results in more than a super-tiny bruise.

Okay, not really.  The actual moral is that if you jump on top of infections early, like was done this time, and you get proper and prompt treatment... you may still spend hospital time, but they don't have to start chopping chunks of flesh out of your body.  I'm thankful for my friend being pushy and not letting me shrug it off or say "oh, it can wait."  Thankful for my doctor being mean and riding me about getting it rechecked sooner, and calling infectious disease to make them get me in sooner (they were going to give me an appointment Friday, i.e. yesterday).  If not for those two, I'd have crawled into bed and gutted it out until Wednesday or maybe even Thursday before going to the emergency room, and it'd have been a much longer road to recovery, probably involving surgery and permanent damage.

Also, if not for those two, the information board by my bed wouldn't have had the following on it:  APPTS (supposed to be an abbreviation for appointments) - No, she lives in a house.  Get it?  I know, I know... apartments only has one P, but it was funny at the time.  The doctor and friend thought so, especially.

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Sunday, January 23, 2011

Pray?

So these are low-quality pictures off my cell phone.  Sorry for that.  But here's the deal:

December 17th, I had my blood drawn for a simple test.  They only needed ONE tube.  They stuck me a LOT of times in my left hand, and then a lot of times in the right, before they met with success.

Three days later, my left hand had bruised and swelled and looked like this:


After about a week, it looked like this:


Then it almost disappeared, and then came back and got red and hot, and about the second week of this month, I ended up in the emergency room (because urgent care wouldn't see me... grr...) for antibiotics.  After 7 days, it was better and looked like this again:


24 hours after my last dose of antibiotics, I got what I thought was the flu.  As in, not a cold, but influenza.  Super achy, headache, throat was kind of sore, and I had a nasty fever (103+).  Still have that, by the way.  After a day in bed, I noticed my hand getting more painful.  Friday, over the course of 8 hours, it went from looking pretty decent to looking like this:


I know this isn't my typical post.  But I'm asking, will you pray?  This is exactly, EXACTLY, how things were initially with my leg last year.  I'm back on antibiotics (was on cepholexin last week, this week I'm on cephadroxil; not sure what the difference is, if any).  I feel a tiny bit better today, almost 48 hours after starting this new course of antibiotics (plus the loading dose I got in the ER) and it's supposed to be "a lot better" within three days.  I can NOT go through the surgeries and the wound vacs and hospital stays and skin grafts and all of that again.  I WILL not.  My God IS bigger and better than all this. 

I see the wound clinic (staffed by surgeons and infectious disease docs) tomorrow since the infection recurred so promptly, and also since it's the second significant infection I've had in less than a year.

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Wednesday, October 27, 2010

Leg Update.

Have had a few people wondering how my leg is doing... so I thought I'd post an update.  I am 5.5 months post-op, and almost 33% of the way through the "active healing" phase.

The graft is doing well, after I split it open a while back.  Other than the scars from that, it looks pretty good.  It's turning colors, and is closer to the color of my regular skin.  There's something going on with one of the muscles in the front of my shin - it hasn't functioned since I bruised and split things. 

Yes, I bumped the contrast a little on this, so you could see the outlines of the muscles.  See that big gap in my shin?  That's not supposed to be there.
It's hard to sit idly by as adhesions form between the graft and the muscle facia, since I know eventually they'll tear free.  Surgeon sais absolutely no efforts are to be made to stretch or break them until after that 18 months, though, so... I watch.  The medial edge of the graft is adhered to my periosteum.  THAT part of it actually really hurts.  Very sensitive to the touch, very uncomfortable if it gets pulled on.


But over all, I am thrilled with how well it is doing.  It is healing, I have TWO functional legs, I am alive.


And as a friend said the other day... it's starting to look like a leg again.  :)

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Monday, August 30, 2010

Das Boot.

This is a leg update, just in case you want to quit reading now. 

It's been REALLY sore the last week or so - I think from nerves regenerating.  Or something.  I've been getting some spots of superficial sensation back, but the spatial awareness isn't there at all yet.  Tibial plateau is still very sore and bruises randomly (and often), but I haven't had a fever in over a month.  I've been working out and for the most part, tolerating it pretty well.  By working out I mean doing Martial Arts and pushing as I do.  But over all, in spite of the soreness, I feel like it's been doing really well.

Today, I put some things into a cave for a friend.  Heavy things.  That I was dragging in a big blue toy bucket with one hand, while I used the other hand to hold a rope and walk backwards down a VERY muddy incline.  A very steep, very muddy incline.  And then I climbed up for a second load.  And then climbed up to untie a rope to use down in the cave.  And then climbed out again.  And then built a fire (I'm an excellent fire builder).  At some point, either in dealing with the cave or in breaking up wood for the fire, there was an impact to the back edge of my graft.  It didn't hurt - I never felt it happen.  But now there's a nasty bruise underneath the graft, the muscle compartment is rock-hard, and the skin graft is split in a few places.

SO... I'll be backing off on the physical exercise for a week or two, and wearing BOOT again until the swelling goes down and the muscle softens back up.  It's frustrating, but... it will be okay.

**I am editing this to add a picture?  Why?  Because you guys asked for it.  I'll leave it small for those of you who might be a bit... squeamish.  But this is what it looks like if you happen to have a skin graft wrapped halfway around your leg, and you subsequently happen to bang it into... something.

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Friday, July 2, 2010

Stock in 3M

So I've been thinking... maybe my husband and I should support ourselves financially.  By taking out stock in 3M.  You know, the company that makes VetWrap.  I use a roll every day.  For my leg.  Speaking of leg... I think it's time I quit hiding it and post an update.

This is what it looks like all wrapped up the way it's supposed to be.  VetWrap comes in a lot of colors, by the way.  In case you were curious.  I use the VetWrap for the fact that it creates and maintains even tension.
Underneath the VetWrap, I have an ace bandage.  Not a regular one - one that is twice as long as normal.  It holds my foot in alignment, at least most of the time.  It would not be adequate without the VetWrap though.  The tension, if left as you see it below, would migrate and slip, and would fail to control the swelling or assist with circulation.
Underneath all that ace bandage, I have a hefty layer of 6-ply gauze.  I'm not actually oozing or bleeding or anything.  But the gauze is important.  I have learned how to carefully fold it so that it provides padding and also some protection in the instance of shearing pressure over the graft.  Plus, I can gob massive amounts of aquaphor underneath it, and keep everything soft and happy.
The final thing that stands between my leg and the world at large is Aquaphor.  Maybe I should take out stock in Beiersdorf Inc. (the makers of Eucerin and Aquaphor) too.  I use great gobs of it on my graft site every morning and night.  It is, according to the plastic surgeon, the most important thing I can do for the graft.  Keeping it soft helps to gain thickness, prevents it from splitting and causing major issues, and enables it to stretch a little if it is bruised, instead of breaking open.
Okay, this next one is the one that embarrasses me.  Please no mocking.  But also, please don't look away.  I'm not trying to engender sympathy, not trying to say "poor me."  I'm trying to say... be careful.  What you see below is the result of a relatively small self-inflicted cut on my shin.  It got infected.  The bacteria was resistant to treatment and ate away a LOT of flesh, including some important blood vessels and a nerve.  It also inflamed the lining on my tibia, which caused enough internal swelling to significantly damage the interior nerve.  I have no sensation below that ugly hole, short of some intermittent tingling that cannot be interrupted.  Irritating.  But, I am blessed.  The infection nearly took my life.  I am not only alive, but I can walk.  On my own leg.  It looks pretty stupid, but it is attached and mostly functional.  The surgeon was able to move around existing muscles to make up for the loss of one of my shin muscles.  That's why the graft looks so lumpy - the muscles are still settling into their final positions, and are bulking up a little unevenly.  I expect it to improve over time.
Anyway. for the curious, this is an update on how my leg is doing.  I have some big leg-related news pending right now... I will post when the time is right.  Meanwhile, I hope this answered your questions. 

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Thursday, June 10, 2010

I'm Alive.

It wasn't all that long ago that I wondered how long that would be true. The alive part, that is. I remember the surgeon coming, telling me that the VRE infection I had developed in January was still rampant. It grew both in my wound and blood cultures. For those of you unfamiliar with the abreviation, the VR portion stands for vancomyacin resistant. That means that they literally don't have anything left to treat it with. They were pumping me full of three kinds of antibiotics, plus the antihistamines and steroids required when giving me levaquin (I am allergic). Those would take care of some of the bacteria - the other kinds. But the VRE? The doctor said it was up to my own body.

God was merciful. I initially caught the infection along with four other kinds of bacteria. Most likely from someone who didn't wash his or her hands adequately before applying gloves and doing a dressing change while I was hospitalized. They told me then that there was nothing they could do about the infection. We all thought it had abated, until nearly three months later when my shin literally started rotting off.

God was merciful. In spite of the fact that the original wound was self inflicted, and in spite of the fact that I was falling apart in so very many ways, He saved my leg. And He saved my life.

I was thinking about this tonight in church, and Psalm 143 came to mind. I've got it below for you to read. It just seems... fitting.

O Lord, hear my prayer, listen to my cry for mercy;
in your faithfulness and righteousness come to my relief.
Do not bring your servant (me) into judgment,
for no one living is righteous before You.
The enemey pursues me, he crushes me to the ground;
he makes me dwell in darkness like those long dead.
So my spirit grows faint within me;
my heart within me is dismayed.
I remember the days of long ago;
I meditate on all your works and consider what your hands have done.
I spread out my hands to you;
my soul thirsts for you like a parched land.
Selah. (Which means meditate on this.)
Answer me quickly, O Lord;
my spirit fails.
Do not hide your face from me or I will be like those who go down to the pit.
Let the morning bring me word of your unfailing love,
for I have put my trust in you.
Show me the way I should go,
for to you I lift up my soul.
Rescue me from my enemies, O Lord, for I hid myself in You.
Teach me to do your will, for you are my God;

may your Spirit lead me on level ground.
For your name's sake, O Lord, preserve my life;
in your righteousness, bring me out of trouble.
In your unfailing love, silence my enemies;
destroy all my foes, for I am your servant.

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Sunday, May 30, 2010

An Un-Finished Product.

So, right now, my leg is almost a finished product. At least as far as my plastic surgeon is concerned. The graft has taken very well, and that's what his job was. He's proud of his work. And really, he did do a good job. The Hole, as I call it, is completely covered with skin/scar tissue.

But, and this is a big one... it's not finished. I am currently able to walk on it, but not very well. No proprioception (the ability to tell where it is at) and no feeling in most of it. Medically, there is nothing that can be done. According to medicine, I will always have The Hole, and it will always be super sensitive. I will always have a nerve deficit, and will be unable to regain a lot of the function that's been lost.

But there's something even bigger than that. I refer to Him as God. You know, the Creator of the universe? He amazes me with His love and His faithfulness. He is my provider. My healer. And with Him? Exceedingly above and beyond that which I could ask or even dare to imagine. That's what He'll do for me.

I can't honestly tell you what my leg will be like when He is done doing what He's doing. I don't know how much I'll feel, or what I will be able to do. I don't know if He will get rid of The Hole (He can, you know - He can do anything), or minimize it, or if it will always be as ugly as it is now.

But I DO know this: His mercy, shown to me in spite of the fact that I picked up the blade, I made the cuts, and I ignored His pleading voice... His mercy has left me standing. Do you get that? STANDING. I can stand up. I have two legs. Both of them work well enough that I can stand. And I can walk.

Today, I visited a friend who was working in the long-term care unit of a local hospital. The people there can't say what I can. Many of them will never walk again, this side of heaven. It wasn't all that long ago that I lay in a hospital bed, my leg feeling like it was on fire, and wondered if I'd still have two legs the next evening. It wasn't that long ago that a physician advised me I should be prepared, because a lot of the bacteria that grew in my wound culture was completely resistant to treatment. It wasn't that long ago that I quietly pleaded for my life. So in a way, I do get what those people are going through.

But in a much bigger way, I don't. The reality is, "The Worst Case" has already happened to them. For me, it was a future possibility. At times, I was told it was a future likelihood. But, I have received MERCY. I cannot complain. Yes, my leg is hard to use. Yes, my knee keeps getting wrenched because my foot floats to some some absurd angle mid-stride. Yes, I lay awake at night unable to sleep because my leg is covered in goosebumps and quivering and shaking and jerking.

But there's more. Because I can stand on my own two feet. I can walk down the long hallway of a rehab unit to visit a friend. I can get in my car and drive. My foot has a pulse despite significant arterial damage. My skin graft took, the first try. 100% of it. I stood in front of a Martial Arts class last Thursday, and taught. Next week, I'll stand in front of a group of women and endeavor to give to them what's been given to me.

I'm not ready, yet, to share what is left of my leg. It isn't pretty. It isn't completely healed. I still have a huge red rectangle where the doctor took skin for the graft. I still have to have it wrapped all of the time, to try and prevent swelling. But you know what? I am ready to share that my God has preserved my leg. I still have it. It is still useful. And, despite so many emotions saying otherwise, so am I.

So am I.

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Saturday, May 15, 2010

Last Day?

This could very well be my last day here in the hospital. That would be fantastic, you know. I'm not sure what will happen tomorrow, though. I may go home to resume all activity, or maybe I'll go home for more bed rest. If it's the bed rest thing, I'm going to stay in the same place I spent my high school years, simply because everything is on one floor. Or maybe I'll stay here on total bed rest still. Or stay, but with "bathroom privileges." Really no idea.

Today has been a rough one as far as feeling just... crummy. I ache everywhere - all my muscles and joints. My head is pounding, stomach rolling. Foot has gone completely numb to the touch, but still feels constant pins and needles. Donor site is super sore - had to rip the bandage away so it isn't getting brushed, and even then... my skin twitches and it almost makes me yelp.

Yes, I used the word yelp.

Have been being a jerk today as far as company goes - haven't wanted any. A friend who works here stopped in, and it was good to see her, but... over all, I want to be alone. Completely left to my own devices and quiet and peace.

I have to figure out supper, and to be honest... I think I just want oatmeal and strawberries and yogurt and bacon. Not a typical "supper" but it's about the only thing that doesn't turn my stomach at the mere thought of eating it.

There is also that hot fudge and marshmallow sundae down the hall in the freezer for me. But that's not "healing food," it's just yummy.

The nurse just came in and did a "mental health assessment." She doesn't seem to know what to do with the answers I gave her (honest answers). Is it really that unusual for a patient to come in with PTSD and also be in the middle of some serious depression?? Here's to hoping she doesn't page some random on-call person for me to talk to. Blech - who really wants a stranger to talk to, ya know?

Prayer requests today - I don't want to stay here any longer than absolutely necessary. I don't want these aches and sweats and chills and new pain and new numbness to mean anything actually bad. That this is just a normal healing progression. Otherwise, I'll check back in tomorrow and let you all know the verdict - home, here, what can I do, all that jazz.

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Friday, May 14, 2010

It's a Heaven Day Today

Today is post-op day 3. That means that the day after tomorrow, I may get to go home. Which would be fantastic.

However, having spent the last five months fighting to get this thing healed up, I am not going to argue with anything the surgeon says or recommends.
For the most part, the care I have received here has been phenomenal. The therapist who leads my DBT group stopped by to give me the homework from the group I missed. The psych. nurse who assists with that group came down today and spent nearly an hour - it was actually quite helpful.
My psychiatrist has been in at least twice every day, making sure that as my body gets all wonky from the surgery, the psych meds are adjusted as needed. Have had a few nurses and/or nurse's aids who are rather bitter that my "bed rest" does not involve a catheter or bedpan. Not sure why - it's less work for them this way, and it's definitely less traumatic for me. If the surgeon had not agreed to the modification, the psychiatrist would have prescribed some pretty serious sedatives.

Plus there's the whole laptop that's been supplied for my use. And the fact that some friends have allowed me to borrow some of their movies.
I guess I don't really have anything else to update you with. The wrappings (half-cast and LOTS of padding) won't come off until Sunday, and we won't know if the graft took, or how well it took, until then. Can't say when I'll be home, because nobody knows.

But I do know that when I get there, my house will be amazingly clean. My wonderful aunt Barb came over today, and she worked hard (very hard, from what I hear) to make my homecoming easier and safer. Extremely grateful.
My grampa's sweet, dear sister Hazel has stepped into eternity to join that cloud of witnesses. Those of us still here will miss her, but truth is, she's never been better than she is now. Today is her heaven day.
Specific prayer requests - rapid regrowth of skin at the donor site, and rapid growth at the graft site. Less of the pins and needles sensation, less itching. And it'd be great if the really persistent and very uncomfortable aching in my tibia were to ease up a bit.
So, that's all I've got for tonight.

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Thursday, May 13, 2010

Day 2. Or 3. Depends how you view it.

Had my surgery early Tuesday afternoon.

There were no complications. The doctor wasn't able to do as much reconstructing as he wanted, but that is okay. He got the skin graft in place, put the biggest splint/bandage on my leg that I have ever seen, and is very optimistic that the graft will take.

I'm hooked up to a hospital grade Slurpee now, which is a pity. I miss my little one.

This bed rest thing... there are people who do this for months at a time and they stay sane. I don't get that. I suppose maybe if I were actually miserable, it wouldn't be such a bad thing, but the truth is, they've got my pain under control and I feel pretty great.

Fortunately, they do supply us with laptops to use. So I can tell you all in real time that I am doing well. Just ordered a late lunch (like 4 hours late - whoops). Will be taking a nap sometime shortly thereafter, unless the pigeons outside provide me with adequate entertainment. We shall see...

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Tuesday, May 11, 2010

Scheduled Post #1

Today was the Big Day. As written on my pre-op orders, my surgeon performed, on "the lower right extremity," a "deep structure, muscular, and vascular reconstruction followed by a partial-thickness skin graft." I would imagine that right about now, I am in my hospital room either asleep or wishing I was. I'm receiving some pretty heavy duty antibiotics to fight the three bacteria that grew out in very large quantities on the last culture, and have formed obvious colonies in my wound. I've got a couple big whitish-yellow ones, and a couple big greenish ones. Or I should say, I had those. The surgeon removed them.

I can honestly say that while I doubt the next few weeks will be all that enjoyable, I am quite convinced that it is the right decision.

I'm not proud, but the wound was self-inflicted a long time ago. Toward the middle of January, actually. We are now pushing the middle of May. That's five months spent trying to deal with one stupid cut. I'm going to tell you a little bit more about it, just because I want to write it out for my own sake. And maybe some of you will read it and get the guts to stand up for yourself more effectively than I did.

The cut was deep - one of the deeper ones I've ever made. My bone was exposed, a muscle cut through nearly all the way, and an artery severed completely. My husband came home and found me with that and several other cuts, sitting on the floor in a daze. He called 911 - I think I asked him to. I had lost a lot of blood, and was scared. Very scared.

The nearest emergency room happens to be one we don't prefer, but when one calls 911, one loses the option to choose. Fortunately, they allowed me to call my regular physician to come in and do the repairs. He did an excellent job - I was able to walk when he was finished, despite the muscle damage.

I was admitted to the psychiatric unit of a different hospital. While there, nurses changed the dressing on my leg daily. After about a week, I noticed that one cut did not look quite right. I pointed it out to the nurse, and she assured me it looked fine. I know my body pretty well, and knew it didn't look "fine," but I let it go. The next day, it looked even more "off." I pointed it out again, with my husband present. She said that all wounds heal differently and it looked fine to her. The next day, the same thing. 12 days after the original injury, the sutures were removed. The wound looked swollen, was hot, and just a tiny bit pink. But I had no fever and there was no visible pus. I insisted, again with my husband and two nurses present, that it felt very much infected and asked that they please have a physician look at the wound. The nurse practitioner barely pressed on one end and the whole thing split, revealing the infection I had told them was present.

It took a month for the wound to close. Most of that month, I was in the psychiatric unit. I was accused of wound tampering and told that I was the reason for the infection. Cultures grew out bacteria normally found in fecal material, as well as some found in dirt, and some found exclusively in certain species of pet birds. In other words, the infection came from someone who just didn't do a good job of washing his or her hands.

After the scar was fully formed, my leg would frequently swell and get hot just below it. I was assured that that meant nothing. No problem. When yellow fluid began draining from the corner of that scar and from several others, I was told again that it was normal fluid and there was no issue. I let it go. Again.

Nearly a month passed, with constant drainage, swelling, and pain. I was assured by physicians (not mine - he was not yet cleared to see patients following a horrid accident) that it was fine. Told I was being a hypochondriac. My chart was noted that I was suspected to be a Munchhausen's patient. (Munchhausen's is a disease where patients make themselves sick in order to get attention from doctors. For the the record, I loathe having to go to the doctor. For anything.)

I woke up one morning with a leg that was grossly swollen, red, and hot. I had a fever, ached from head to toe, and couldn't stand even the brush of my pant leg against my leg. I emailed my doctor, and waited for the clinic to open. I was given a 2:30 appointment. When we got there, the doctor let us know that a surgeon was on his way over to look at it. Two hours later, I was wheeled into surgery and the abscess was drained. A wide, eye-shaped hole was left that went all the way down to the bone and muscle, to allow all of the "fluid" to drain. Wet-to-dry dressings were applied, that I changed out twice each day. After two weeks of no visible healing happening at all, the surgeon decided he'd order a wound V.A.C. Meanwhile, I noticed that there were little black spots forming inside the wound, around the edges mostly. He assured me that these were just dried spots of blood.

And then the whole thing turned black. As if someone had dumped tar into the wound. And the black started to spread. The surgeon took two days to believe me over the phone, and I came in a day early to get the wound V.A.C. put on. He was shocked to see that it really was black. Rather than do anything, though, he applied the V.A.C. (henceforth referred to as Slurpy) over the top of the eschar. He said he believed it would take care of itself.

Four days later, when I went back in for the dressing change, the necrosis and infection had spread dramatically. Went in the next morning for yet another operation, and stayed in the hospital for 6 days. The day I went home, the doctor applied a special dressing that contained silver. He said that would help kill off any micro-organisms. It started to sting and burn as soon as it was applied, and within two hours, I was in nearly unbearable pain. The doctor did not believe me, said that it was normal for it to burn a little. A nurse brought up Munchhausen's yet again. I asked to either be transferred or released so I could seek a second opinion.

By the next morning when I saw a physician in a wound clinic at a different facility, the reaction between my body and the silver had enlarged the hole in my leg considerably. I was in absolute agony. I was angry, tired, and barely able to think. The dressing was removed, taking with it all of the granulation tissue that had formed during my 6 days in the hospital, as well as the facia over one of my muscles. Fortunately, the exposed nerve stayed intact. The nurse dumped saline into the wound, over and over. Each time, it briefly stung but the agony lessened. By the time she was done, it felt just like it should - sore, a bit of stinging, some aching... nothing even remotely unbearable. The wound doctor looked at the wound and photographed it. Noted that my tibia was exposed. Noted that there were areas of necrosis that went deep into one of the muscles. Noted the exposed nerve. Noted the end of a vein that had been severed by the last surgery. And then referred me to a plastic surgeon.

He took more photographs, looked at the wound more. Talked to me about the fact that he was pretty sure the wound would not heal without significant intervention. Scraped away some colonies of bacteria. Burned away a bit of necrosis. Flushed everything out with saline. Put Slurpy back on, with a normal slurpy sponge. And scheduled today's reconstruction and skin grafts.

The point here? If you know, and I mean absolutely know something is wrong in your body, don't let a doctor or nurse blow it off. I did, and here I sit five months later, waiting to have major surgery and praying that everything can be achieved in one operation. I am on narcotics, and have been for the last three months. I have three types of bacteria that are not antibiotic resistant, and yet continue to colonize the gaping hole in my leg. And if that first nurse, the one who said all wounds heal differently, had listened... well, I wouldn't be in this situation at all. Had it been treated correctly way back in January, all of this would have been avoided.

Speak up folks, and be loud.

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