Newsflash

I’ve decided that if I need to, I’m gonna be blogging in between The Lost Summer posts.  So much is going on in my life RIGHT NOW, I don’t want to skip it simply because I want to write about the past.  Make sense?  Good.

Mr. Spleen, Mr. Spleen AKA The Lost Summer (Part 2b)

Not all Doctors are created equal, in fact some doctors should have never been created…

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So, where were we?  Ahh yes.. Pocono Medical Center.  So, I’ve been getting platelets all night to stabilize my condition; I remain in the ICU in case something catastrophic happens.  Poor Anita is stuck having to be with me.  Strangely, what I am worried about most is losing my job.  I had missed so many days this year due to this illness, I feared any more sick days and my boss would have it.  Him and I already had a little bit of a “sit down” due to the amount of sick time I was taking from the company and while he understood I was dealing with something completely off the wall, he also made clear his need to have someone he can rely on to put their butt in the seat when he needed them.  What made the situation worse in my head was that I was actually on call that weekend.  The last thing I needed was to be sick that weekend in case something huge had happened.

 

And all the while I was worrying about this… I was actually ill, too… Or so they told me.  The orange juice flowed, eventually my mom came up from NJ, and the barrage of specialists came in; all wanting a piece of the mystery disease that was so far above their capabilities, they must’ve been dizzy in their research.  I don’t remember any of their names, but I don’t remember liking most of them save for two.  The worst part?  The doctor in charge of my condition was a hematologist that wanted no part of my situation from the second he saw my chart.   I don’t remember what he looks like, really.  White man, lab coat, indifferent look on his face.  While having my first conversation with this man, I already know that his main goal is not to find anything out, but to get my platelet count above 50K so he can ship me off.  Now, while the prospect of being stabilized is wonderful, I (and everyone else) was more concerned with the fact that no one knew what was going on inside me and the fact that every time they’d infuse me with platelets, every time they drew blood and checked it thereafter, the count would drop.  When I bring this up to the hematologist, his response was an indifferent phrase to the likes of “don’t worry, we’ll getcha outta here.”  At first I was afraid that I was going to be stuck there forever, now I feared that I’d be given the proverbial band aid and left to fend for myself. 

That first day in the ICU was difficult to deal with.  I was so afraid and so confused and so worried about so many things that I just felt awful.  My mom came in and has no idea as to what is happening which naturally throws her into panic mode.  Anita is her usual calm self, nut her concern is as visible on her face as her smile.  Even more wonderful is dutiful James who basically sacrificed his Saturday night to spend it with me there in the ICU.  Sitting there in my little half room, watching TV with me until he fell asleep.  Having those people around feels reassuring.

What is not reassuring is the massive confusion between the doctors.  They are sending in infectious disease specialists, the douche hematologist, endocrinologists, and various other unidentifiable doctors that all come in, ask the same questions that I am forced to answer again and again; they all poke and prod and press and do whatever other uncomfortable procedure they deem necessary.  Of course, after all the prodding and answers I give them, they all walk out of the room just as baffled as they entered.  Of course, I would expect nothing less from doctors that have had absolutely no experience with my illness that has had no diagnosis for 20+ years.

After what seems like an unending line of idiots, my knight in shining armor (white lab coat??) appeared.  He is the attending physician and while he understands that this may be above his head, his interest is not in setting me free, but in getting to the bottom of whatever was causing the issue.  I remember him very distinctly because he was the only one in that place that made any sense to me.  He was the only one who spoke with any sense of urgency.  I believe his name is Dr. Kemed.  Aside from his doctor clothes, he really didn’t look like a doctor.  Short, pasty-white, intentionally shaved head, even an earring in his ear.  He kind of looks like Chris Daughtry if he had decided to become a doctor instead of a rock star (did I just admit to listening to Daughtry?); just shorter and with less eyeliner.

Instead of trying to discharge me and was the hospital’s hands of this problem child, he insisted that I remain in the hospital for my own safety and that he would try to have me transferred to UPENN ASAP to see Dr. Stadtmauer (the hematologist that had been studying my issues for 3 years).  Great, right?  My prayers have been answered!  Wrong.  UPENN does not accept hematology transfers on the weekend save for acute leukemia patients.  Dr. Kemed and one of his associates said they would see if they can pull some strings and make some phone calls and get me transferred and have this if not taken care of, at least looked at.  All I had to do was sit tight (as if I had another choice).

While these two fine doctors try to call in favors or promise favors or whatever doctors do when they push their problems onto their friends, the douchatologist comes in revealing what we already knew.  With every transfusion, the platelet count increased, but with every hour that passed, the number would diminish.  Great deduction, jack ass.  Tell us something we don’t know.  Please.  Anything.  Have it be the weather, the color of your eyes, your birthday.  Anything to justify the bill your office is going to send my insurance company for this bedside visit here.  Anyway..  Another bag of orange juice was in order and he went on his merry way.  Wonderful.

After a few hours (which was passed wonderfully with more visitors.  Anita’s family was wonderful enough to come in and visit… And bring KFC.  My God, do I love KFC), I learn the results of the doctors’ attempts to parcel me off to UPENN.  Nothing.  There would be no way for UPENN to break with policy and free up a bed for someone not having complications from Leukemia.  Isn’t that just selfish?  I mean, come on people!  I WAS BLEEDING FROM MY GUMS!  Haha.  I’m just kidding.  Totally understandable.  They need to keep beds open in the hematology ward for people that really deserve them.  I would have to wait until Monday to be transferred.  It is Sunday at this point, so one more day without some sort of medical disaster and at least I would be someplace with people that were familiar with my condition.

Monday comes.  More orange juice, terrible hospital food (seriously…  Thank God for Anita’s parents bringing me KFC.  I can’t say that I wouldn’t have survived without it… But I also can’t say that I would have survived without it… You decide), and one final blow to the jugular.  The douchatalogist walks in with a smugness about him as if he had just accomplished some great feat.  Guess what?  The hospital is sending me home.  Yep.  They had brought my platelet count above 50,000 and they could now legally release me.  Doesn’t that sound great?  After an entire weekend of doctors telling me how dangerous my situation is and that any number of normal every day activities can lead to my death, now I get to go home and partake in those normal every day activities!  Hooray!

Needless to say (but I will), I am completely horrified by this news.  What kind of practice is this?  Scare the pants off the patient into believing anything beyond the hospital walls can kill him and then…  Release him beyond those hospital walls?!?  I am horrified while everyone else involved on my side is furious.  We don’t even get a say in the matter.  One of the doctors tries one last plea to UPENN to no avail.  With a platelet count above 50,000, no one even thinks my insurance would pay to have me transferred to UPENN because.. Well.. They legally don’t have to.  Ain’t our health system grand?  Of course, in hind sight nothing happened and everything worked out fine, but at the time, it was just absolutely infuriating. 

So, I am released.  A weekend sojourn to the Pocono Medical Center was concluded only to be followed by what I fear to be endless out patient testing at UPENN.  I toy with the idea of writing an email to Dr. Stadtmauer at UPENN asking (read:begging) him to admit me so that I (and whoever else.. or rather EVERYONE else involved) would not have to travel between either The Poconos and Philadelphia and/or my mother’s house in Somerset, NJ and Philadelphia.  Also, if I was going to be an outpatient, I would have to return to work and that would just have been a scheduling nightmare.  And for what it’s worth, I just wanted this whole thing to be over.  Spending another who-knows-how-many days driving back and forth to UPENN to get whatever tests they wanted me to take would drive me crazy.  I just wanted to stay there, let them poke and prod me for however many days they deemed fit and have this be done with once and for all.  Through the grace of my job and my boss, I would be eligible for short term disability for up to six months (granted I didn’t think I’d need anywhere near that long) and not have to worry about my salary or losing my job.  It just seemed to make sense.  Let’s just hope Dr. Stadtmauer sees it the same way.

I write the email first thing when I get home.  If nothing else, with all the thoughts of danger swirling around my head, it feels good to be home.  It feels good to sleep in my own bed.  It feels good to be surrounded by my stuff and not tubes, dinging monitors, nurse call bells, and strangers in white lab coats.  Much to my amazement, the next day Dr. Stadtmauer replies to my email.  I wrote him a long plea trying to tug at his heart strings in explaining my situation and my frustration with my condition seemingly deteriorating.  The email must’ve translated to two and a half pages of whiny drivel.  Maybe even more.  I’m actually surprised he read it.  I wonder if he made it all the way through.  Thankfully, his reply was short and much more succinct.

He simply wrote that he remembered me and to bring my bag to my appointment as he was going to have me admitted to the hospital and we were going to get to the bottom of this starting that following Wednesday (7/15/09) at 12:00pm.  Success.

 

To be continued…

Mr. Spleen, Mr. Spleen AKA The Lost Summer (Part 2a)

Not all doctors are created equal.  In fact some doctors should have never been created

 

So here I am, driving to the ER against my will.  Almost as soon as I turn they key, I change the radio station to WCBS to hear the Yankees game.  Before I hear one solitary word from John Sterling’s mystical voice, Anita’s protests are met immediately by me explaining to her that I was obviously deathly ill and the only thing that had a chance at keeping me going was hearing a John Sterling homerun call.  She lets me listen to the game.  She loses some respect for me too, but she lets me listen to the game.

We arrive at the completely overcrowded ER and have difficulty finding parking.  What are these people doing here?  Don’t they know that I’m having a serious problem and waiting in line is NOT something that I’m into?  Whatever.  So, we walk into the ER and go to the registration desk.  I’ve been to the ER before, so it didn’t take that long.  The one HUGE mistake that I made when registering was when she asked me to gauge the amount of pain I’m in, I declared I was in no pain.  This will inevitably come back to haunt me.

Anita and I take a seat on the far side of the ER waiting for my number to come up.  I brought a bottle of Gatorade (or G, rather) with me to keep me hydrated.  Of course, Anita wants none of that and is drinkless.  She would later regret that.  One hour passes.  This is not abnormal for an ER and it does not raise any concerns in either of us.  We pass the time blabbering to each other only to be interrupted by me checking the Yankees’ score on my phone.  Finally, we are called into the triage nurse’s area.  As she was taking my vitals and asking me the reason for my visit, I ask Anita if I can have a sip of my Gatorade.  Before I can take the cap off the bottle the nurse scolds me as if I’m a little boy to not eat or drink anything until the doctor sees me.  I really REALLY plan on listening to her.  Seriously.  I do.  She issues me my pretty little hospital bracelet (an uneasy staple for the next two months) and we return to our seat.  Another hour or so passes (as does plenty of G intake) and we are not quite sure, but it seems as though some of the people that have registered after us have been going through the magic ER doors before us.  We aren't completely sure of this, so we ignore it for now.  Another obvious mistake.  A third hour passes.  Now it is plainly obvious that people that have registered before us have been admitted to the ER before us.  We realize what we did wrong.  When we were with the triage nurse, she asked me to measure my pain on a 10 point scale.  I wasn’t in any pain, so I said that my pain was a zero.  Let this be a lesson to you, kids.  Honesty does not pay off in the end.  By the time we actually went through the doors, it must’ve been 1:00am.

So anyway, we finally get into the ER and we’re both waiting for the nurse.  They immediately start me on an IV and draw blood.  We sit and blah blah blah for a while until the doctor arrives.  The doctor walks into the room, closes the door, and asks me what’s going on.  He’s not exactly intimidating, but he’s not exactly benign, either.  A middle aged man with a scruffy face with no distinguishable marks except for the military tattoo peaking out from under his doctor’s scrubs.  Sure, this wouldn’t scare other people, but I’m squeamish and tattoos are scary.  Especially on doctors.  Am I alone here?  Anyone?  Is this thing on?  Anyway, I’m not that scared because last time I was in this ER, I had the same doctor and he was great.  I explain to him that I had been bleeding from my gum for 2 days and I had noticed some petechiae on my feet and Anita noticed it over my body in general.  As soon as he sees the density of the petechiae on my feet, he looks up at me with a look of minor horror.  He looks at my mouth and sees the extent of my bleeding and tells me that there might be an issue with how many platelets are in my body and that he’d have to check the bloodwork and see if I will need any sort of transfusion or anything.

This is not completely foreign to me.  I’ve been having trouble with my blood since I was about 5 years old.  No one has been able to really figure it out (until recently) and I wasn’t completely afraid of the results.  I go through periods of low blood counts from time to time and I figure that this would not be any different.  I feel no fear at all.  Yet another mistake.

The doctor returns again after some time with another look of worry on his face, this time one more serious than the previous.  He looks up at me saying that my platelet count was around 2000 and that I would need an immediate transfusion of platelets.  A normal platelet count is between 150,000 and 400,000.  Apparently, at 2,000, a person is in danger of just bleeding out through his capillaries and stuff like that.  Real good news.  This was definitely something I was not suspecting.  I became worried now because I was on call from work this weekend and could not feasibly stay the entire weekend at the hospital.  Anita yells at me for not just worrying about my health.  Hey, when you’ve missed as many days over the last fiscal year due to this crazy illness at a job you’ve only had for 2 years, you’d be worried, too.  I convince Anita to go back to the car get my work laptop and the on call phone.  This way I can charge them and be ready the next day.

Now the waiting game, or rather another waiting game.  Apparently, the platelets had to be special ordered from another hospital because they didn’t have any there (really?!?) and I was waiting for a room to clear up in the ICU because that would be my home for the weekend.  It was not until what felt like 5:00 in the morning until they found a room for me and I was transported and started on the transfusion.  The bag, connected to me through the IV, was full of this disgusting, gritty, orange juice looking liquid that was slowly seeping into my blood stream through the hole in my hand.  Not that I could physically feel anything, but it was just…. I don’t know… Icky.  Not to mention I had to sign all these waivers absolving the hospital of any liability over contracting any number of diseases from the flu all the way up to the mighty HIV.  Doesn’t exactly instill a lot of confidence.

The worst part about this was telling my mom.  At first, I didn’t want to mention anything, but I decided on the car ride there that I would tell her in case something bigger actually did occur, it wouldn’t be as much of a shock.  In the end, I don’t think it made much of a difference.  Really, of everyone that’s been involved with this situation just over the last 2 months, she easily deserves the most credit.  And that’s saying a lot because everyone involved has done SO MUCH, but I don’t think anyone had worried, struggled, or felt the sting of everything I was going through as much as she did.  She’s a champion for having braved the storm as much as she did; I don’t know if I would’ve have been able to do it given her place.  She may not seem like a pillar of strength to look at her, but I don’t think I would’ve been able to handle the magnitude of everything I went through were it not for my mom holding my hand through everything telling me that it will be OK in the end and to trust in the doctors and in God and in the future.  She’s not a pillar of strength, she’s a mountain of it.  But I digress…

So here I am, wheeled into the ICU like some car crash victim, spleen enlarged to somewhere between 22-26CM (normal size is 8) and a platelet count so low that doctors were afraid of blood vessels bleeding out into my brain, rendering me a vegetable.  If they saw me on lazy weekends, they’d see it’s not too much of a change from my regular behavior.  I try to remain calm and strong, but inside I’m freaking out.  My condition has never put me in this much danger and I’m wondering if this is a signal of a worsening of the disease.  It would’ve been befitting my luck; A job that I like with people that I love, A woman that I want to spend the rest of my life, my own house, yeah.. My life’s almost complete.. Why not add a life or death battle with a disease no one has been able to identify for 25 years to the mix.. Just to balance things out.  Right?  Ugh.

If my recollection serves me right, I receive two bags of magic pulpy orange juice that brings my platelet count just about 10,000.  Still in the danger zone, but in any imminent danger.  Once morning hits, I begin being visited by doctors, of all shapes and sizes.  The worst of these is the hematologist.  I don’t remember his name, but it was clear to me that he was solely interested in stabilizing my condition and getting me the hell out of his hospital.  Great attitude to have, douchebag.

 

This is going to have to be continued in a 2b sort of way…  I feel absolutely exhausted…  I’m sorry.  I didn’t even proofread.  Bleh

Mr. Spleen, Mr. Spleen AKA The Lost Summer (part 1)

Who said flossing won’t kill you

So, the last few weeks of my life have been somewhat of a whirlwind.  Well, that’s not actually true.  They’ve been a whirlwind in the sense that I’ve been turned and spun out and been dealing with things that I really didn’t expect to.  They’ve been chaotic, frightening, revealing, depressing, painful, and at times, very very lonely.  I’ve learned much about my life, my illness, my family, my friends, and about how much physical pain and mental anguish I can handle at once.  I’m hoping that when this is all over, I will emerge on the other side a healthier, happier, and stronger person.  At this point, these things are far from certain.

The story begins on July 8th.  Actually, no.  The story begins the evening of July 7th.  I am at home, watching the Yankees game at night.  It gets late and being the lazy ass that I am, I decided not to floss.  I brushed my teeth, washed my mouth, and decided that flossing just wasn’t going to happen tonight.  This is not that uncommon, I go to sleep not really thinking about it.

I wake up the next day early for some reason.  What’s stranger is that I actually decided to get out of bed instead of wasting the extra time laying there.  Instead, I actually get up, shower, brush, and get dressed.  I have about 10 minutes of extra time.  Now obviously, I have absolutely NO intention of leaving and getting to work early, so I decide instead that I floss.  Why not, right?  I’m flossing and admiring the gross food particles discovered between my teeth.  Yes, I’m disgusting.  Well, while digging for treasure between my teeth, I accidentally cut my gum and it starts bleeding.  This is not completely uncommon, I’m an uncoordinated dufus and the fact that I’ve survived this long surprises almost everyone I knowl.  I thought nothing of it and continued on to work.  I figure it will stop bleeding in a few minutes.

So those few minutes, they weren’t a few minutes.  My gums bled ALL day.  I didn’t know what to think.  The bleeding wasn’t exactly gushing, but it also wasn’t a small amount of blood.  It coats my teeth, coagulates into this disgusting gooey red-snot like monstrosity, and every few hours,  I would go and spit it out and let the process start all over again.  Pretty disgusting, right?  I get home that night and I’m genuinely worried.  I figure there is something SERIOUSLY wrong with my teeth, but I have absolutely no idea how to deal with it.

My first line of defense is to call Anita.  She’s obviously way smarter than I am and can handle these sorts of situations much better that I’d ever be able to.  I tell her what’s going on and I guess she didn’t realize how severe the situation was as she tells me to rinse my mouth out with warm salt water and it will be fine.  I had already tried this earlier with no success, but maybe Anita telling me to do it would work out better right?  Wrong.  That night was terrible.  I bled all over my bed sheets.  The pillow, the sheets.  I woke up in the middle of the night and vomited because of all the blood I swallowed.  An absolutely miserable experience.  Terrible.  I certainly didn’t get much sleep that night.

I wake up the next morning and I’m officially in full panic mode.  My gums are still bleeding; still at the same rate.  My worst fear is that this was some sort of advanced stage of gum disease or gingivitis.  Ever since I met Anita, I have been taking very good care of my teeth, but I thought that maybe previous years of somewhat lackluster oral hygiene have caught up to me.  The worst part?  I have an appointment with the dentist just a few days away.  Do I wait?  Is there something more wrong?  At this point, I am absolutely and completely freaking out (to myself).

I muster the courage togo one more day without really doing anything about it.  I don’t want to miss any work, especially with me being on call during the weekend.  So, I go to bed with the idea that I’ll be fine and this will pass.  Or at least, that’s what I hoped.  Of course not.  Instead, I spend the night having the exact same problems.  Waking up, vomiting, bleeding on EVERYTHING.  I wake up absolutely scared and exhausted.  I get to work, and by this time, everyone knows what’s going on.  Brian (my boss) asks me if I was going to see a doctor about it.  I am absolutely convinced that my issue is caused by a severe case of gingivitis, but that’s not the kind of news I want to declare at work. I figure I’ll wait for my dentist’s appointment and see what the damage is.  I follow the same procedures as yesterday and make it through the day...  Barely. I feel a small sense of relief when I get home because Anita would be coming over in a few hours and she will make everything better, right?  Right.

So Anita came over around 8:30.  At the time, I was in the bathroom as she entered the room.  As soon as her eyes focused on the scene in front of here, she shrieked as if she had just stumbled upon a murder scene.  She screamed and shrieked absolutely flabbergasted by what she saw in front of her.  She groans at the sight of blood everywhere.  Absolutely coating the bathroom.  The part where I get in the most trouble begins when she notices very little blood on my pillow and asks me how that happened.  Scared of what may happen to me, I softly tell her to prepare herself and to flip the pillow over.  “OH MY GOD, PAULASH!  You bled all over your pillow and then just flipped it over and went back to sleep?  That’s disgusting.  You are disgusting.  I can’t believe you.”  She then just stares at me as if to say, “How the Hell did I end up falling in love with you?”  This is a question that may never have an answer.  This is probably a good thing.

She tells me that we need to go to the hospital.  I am obviously against this idea.  I hate the hospital.  I’ve always hated hospitals.  I spend too much time in them to like them.  Especially the ER.  I try to negotiate.  I want to go tomorrow morning so that we can finish watching the Yankees game.  Nope.  We settle on calling Dr. Parikh’s emergency line.  Whatever he tells me to do, I would do.  So, I call and leave a message with his answering service.  Ten minutes later, Dr. Parikh calls me; I tell him the situation and I actually think I heard him gasp in horror in the middle.  As soon as I’m done, he proceeds to scold me as if I’m a little child.  Apparently, “knowing my condition” the fact that I allowed myself to bleed for two days without seeking medical attention was beyond stupid and why even bother with all these doctors trying to figure out what’s wrong with me if I’m going to do something like this.  I just listened and stuttered like a whimpering child.

So that is it.  The decision is made.  I still tried to haggle with Anita for the Yankees game, but she was having none of it.  I reluctantly get into the car and the two of us start to make our way to the ER.  In my mind, I’m thinking that this will be an affair of a few hours and I’ll be home the next day and be ready for work on Monday.  Little did I know the journey I was in for.  Little did I know how unprepared I was for it…

 

To be continued…