Monday, January 11, 2016

To the ER and Back Again

Part of the reason I've been missing from here is the last health scare escapade.  For about a year now I've been having some nasty nasty chest pain (and yes I should have gone to the hospital the first time it happened and yes the EMTs and nurses all chewed me out for not doing so).  Anywho, when I'm fast asleep I'll get woken up by a horrible stabbing pain in my back on the left side just above the bottom of  my rib cage.  After the initial shooting pain it tends to settle into a tight band around my chest at the level my bra strap usually circumnavigates my chest.  Not a way that I like getting woken up.  I can't lie down.  I have to sit up until it passes which usually happens after a few minutes of excruciating pain.  Each time it has happened I've wondered if I'm having a heart attack but then it goes away and I almost immediately go back to feeling normal (well my normal) so I've put off doing anything about it.  One October morning about 10am I got woken out of a dead sleep by this stabbing pain.  It was the worst it has ever been.  This time the pain migrated up the right side of my neck/throat into the right side of my face before settling into the more normal tight band around my chest.  I was scared enough to fess up that I should prob go to the hospital.  Well this set of an astonishing chain of events.

First hubs got grouchy that he had to, yet again, take me to the ER.  He asked me where I wanted to go.  I told him that we should prob go to the hospital ER but the walk in clinic two towns over would be open also.  So rather than going to the hospital which was much much closer he decides to head to the walk in clinic.  The waiting room was full to busting but I got to cut to the head of the line because "heart attack".  After I had a team of women working on me doing vitals, EKGs etc one of the PAs told me that she knew me.  Turns out she was the PA to my regular doc many years prior so we chatted a bit and she told me off for not going straight to the hospital.  She told me that they were arranging transport for me since it might be a 'heart attack'.  Righteo.  'Can I go to the bathroom before you stuff me in an ambulance?"  "Sure."  I go and do my business but when I hobble out of the bathroom not one but three ambulances, a fire truck, the police and a rescue unit were waiting for me.  Turns out the staff decided that transport would take too long and they called 911 instead.  I had most of the Wilmington rescue services there as well as three private ambulances.  I got loaded onto the gurney nearest me and off I went to the hospital.  You should have seen the bill sent to Medicare.  Thousands of dollars.

The EMTs were great but I did get chewed out for not going straight to the hospital.  He asked me why and I told him to talk to my husband.  Then his cell phone went off and he had the Star Trek communicator ringtone which got us talking about scifi movies and made me very happy.

I spent the next several hours in the ER hooked up to various machines.  Lots of blood was taken.  They finally told me that I was going to be admitted for observation and more tests.  The hospitalist, who is supposed to be my patient advocate,showed up and I took an instant dislike to him.  I never saw him again even though I was there for three days.  Hubs went home around 10-11pm while I was still waiting for an open room.  I got formally admitted around midnight.  This seems to be the norm for this hospital.  I get held in the ER and if I am admitted it is usually after midnight.  Must be some magical insurance thing.

Anyway, I never see my husband for the rest of my stay.  I get a terse phone call the next day where he tells me he is sick and shouldn't show up.  I beg my son to come and bring me a huge latte from Starbucks.  So there I am by myself in the hospital room, hopped up on pain meds and now suffering from sleep deprivation.  Since I'm in the cardiac wing they do vitals every couple of hours rather than letting you sleep any length of time.  In comes the Mr Cardiac Doc.  He asks me a few innocuous questions then suddenly turns to me and forcefully announces "You are obese!  You are going to die!"  He said more after that but I have no recollection of anything else he said.  All that rattled around in my brain was "You're fat and you're going to die!!"  I think my mouth was hanging open but the day is pretty fuzzy.  I had wanted to talk to him about my CFS/ME and the stress test he wanted to do.  He started telling me about the treadmill and I interrupted him to tell him about the CFS/ME and how I couldn't walk on a treadmill and he launched into another rant "I've been doing this 27 years...." at which point I knew it was useless to try to talk to him.  He saw me as a fat blob that he had to fix.  A 5'2" 290lbs woman with chest pain.  Of course I was going to die of heart failure.  It didn't matter that I have excellent blood pressure.  It didn't matter that my cholesterol numbers, while not perfect, are still within normal range. It didn't matter that I have no family history of heart problems.  It didn't matter that I used to exercise every single day and was in great shape despite being fat (fit fat it's called and yes it is a thing).  It didn't matter that I had gained most of my weight due to meds and steroids.  It didn't matter that I can NOT exercise due to my illness.  I HAD to walk on his stupid treadmill even though the stress test can be induced chemically.  He was going to prove me wrong!  Of course I knew I wouldn't make it very long on the treadmill so I'm like "Game on, asshole!".

So the next day comes and I'm scared.  I haven't slept well in two days now.  I've been on oxygen continuously "just in case".  They keep alarming my bed but I've figured out how to turn it off and the nurses are too busy to notice.  Dr Ahole has ordered a low fat no salt diet for me which when combined with the gluten free corn free diet leads to NO food choices so I'm now starving and caffeine deprived on top of everything.  I get rousted out of bed and sent down to the cardiac lab.  I have an ultrasound done of my heart which comes out pretty good and then I get sent over to the treadmill room.  They put a harness on me.  No one explains what is going on.  They make me sign papers that I can't read.  I'm freezing cold and they park me in a cold plastic seat with the johnny hanging open due to the harness.  Loud rock music is blaring over my head.  This isn't going to go well.  I get left there for 20-30mins.  I can feel myself descending into head bobbing territory.  Finally the crew shows up: the nurse, Dr A'hole and the nuclear med nurse.  Dr A'hole proceeds to tell me how great I'm going to do on the treadmill.  I mumble "uh huh" and go over to it and climb on.  They start it and already it is going to fast.  My normal gait is much slower.  Then they incline it.  I almost burst out laughing.  "Oh this is going to be good!" runs through my head.  I'm holding onto the handle bar for dear life and am already breathing heavily.  I time the breath to the steps.  Then the ataxia starts.  First my feet start dragging.  Then I start staring at my hands gripped onto the handlebars.  My head starts bobbing in rhythm to my feet.  All three of them panic.  Dr Ahole is yelling "Shut it off!  Shut it off! She is going to pass out!"  The nurse is scrambling to shut down the equipment and the treadmill.  The nuclear med nurse who is a burly guy is trying to catch me and inject me at the same time.  The doc tries to put a chair behind me on the treadmill but the nurse waves him off because she doesn't want the treadmill damaged (fuck the patient).  They manage to get the radioactive dye into me and me onto the gurney and now I can't speak.  The nurse is asking what happened and I manage "Ataxia.  Ataxia starts when I exercise too much."  She was confused as she had never heard of it but Dr A'hole knew what it was.  They covered me in blankets and of course part 2 of ataxia is a panic attack.  I still had no idea what was going on.  I didn't know what they shot me up with.  I didn't know what was supposed to happen next.  They covered me in blankets and left me alone in the room again.  I could hear Dr. A'hole on the phone transcribing his notes on my disastrous treadmill episode.  I had lasted 1 min and 9sec.  They had to stop the test early so the data might not be useful.  "Fuck you Doc!  I showed you! Asshole!" I wanted to scream at him.  I did end up getting stuffed into an imaging machine while having a panic attack.  I was a mess.  Nothing like being completely at the mercy of an abusive doctor.  It was a horrendous experience.  Having no family there made it worse.  God knows where hubs was.  I never saw the cardiac doc again.  Whew!

When I saw the floor doc, he told me that he had reviewed my chart and tests and thought I was probably having gastritis (inflammation of the lining of the gut) from taking Celebrex for four years straight.  He doubted that I had anything wrong with my heart but I still had to do the second part of the stress test.  However, no one could tell me what that second part entailed.  He asked me how I was doing and how I was feeling and if I was tired.  I told him yes.  I was exhausted and I couldn't eat anything they were giving me.  A few hours later a nurse popped in to tell me that I could leave that afternoon if I promised to show up the following day for the rest of the stress test.  I agreed and went home with my son.

This wasn't the end of the ordeal however.  Oh no.  Things couldn't be that easy.  Hubs was running a 103F fever.  He couldn't drive me anywhere so my son had to take another day off work to drive me in for stress test part two.  With my brain now working, I asked the second nuclear med nurse to explain what was going on.  Turns out the treadmill is done first, then you get shot up with dye and put in a special CT scanner that is just for imaging the heart.  Then you go back on the second day when you are all relaxed, you get shot up with dye again and imaged again so the two can be compared to each other.  The long waits I had the day before were for the dye to permeate my system so that they could do the imaging.  Geesh if they had just taken the time to tell me what was going on the day before.  We are done in under two hours.

Hubs is still sick.  My son and I are ignoring him at this point as he is just sleeping in weird places all over the house.  He built himself a pillow fort in one room and slept on the floor there.  I asked him if he needed to go to the ER since he was whingeing so badly.  He said no but he ended up at his docs the next day.  Turns out he had a bad case of flu that had turned into pneumonia.   So here I am fresh out of the hospital and supposed to take care of him.  Not going to happen.  He never asks how I am or what happened.  If he talks at all he just complains about how awful he feels.  I am livid.

I go to my doc for a follow up.  He tells me that I have pulmonary hypertension and wants me to do a follow up with the cardiologist.  I told him I flatly refuse to see the guy from the hospital.  He asks what happened and I almost break down in tears so to avoid crying I don't tell him how nasty he was.  Just that I want a different doctor.  My doc explains the hypertension as a pressure difference between the heart and the tube feeding blood to the lung.  Okay.  So far so good.  Until I get home and Google it.  Holy mother of God I'm going to die!  Turns out this is horrible.  It can't be fixed and it is rare enough and deadly enough that there are specialty centers set up around the US to deal with this and everyone recommends going straight to them and not dicking around with a regular cardio doc.  Luckily I'm near Boston and there is a center at Brigham and Women's where I've already been a patient so I'm in their system.  I set up an appointment with them but it will be a month before they can get me in.  I see the regular cardio doc in the meantime and he tells me that I don't have pulmonary hypertension and it was a freak data point in the echocardiogram.  Whew!  I still want  the expert's opinion though just to put me completely at ease.  The specialist confirms no hypertension.  YAY!!

However, both docs insist that I start an exercise program.  I try to explain CFS/ME to them and all we do is argue.  I give in.  They are cardio docs.  Their mantra is diet and exercise.  I've got the diet part down but I can not exercise and they just can't wrap their head around that.  They both guessed that I have sleep apnea so now I have a apt at Faulkner Hospital in Boston for a sleep study but it isn't for another two months.  Sigh.  Hurry up and wait.

In the meantime, I'm completely wasted from the hospital ordeal, the cardiologists, the trip to Boston, being scared that I was going to die.  I was actually planning out arrangements.  I have the worst two months of my illness all year and winter hasn't even begun yet.  Normally October is my best month of the year.  Gah!  Thank goodness my mum came for Thanksgiving.  I slept so much while she was here.  I started to feel more like my old self.  Kid had gone on vaca to Mexico and hubs had rushed out to Chicago to help his brother who has cancer and took a turn for the worse.  It was just me and Mum and it was great.  No sched to keep.  Relaxed meals.  I could go back to bed whenever I wanted.  It was great and I was bummed that it had to come to an end.

BTW, in case you were wondering.  Hubs and I are talking to each other again.  It took a while though.  I was really really angry.

Fuck CFS!

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