To the Brink and Part Way Back

Poor Cavor! He did have such a terrible cold.

–H. G. Wells, First Men on the Moon

I’m dropping off this piece because I have friends here and there and this is the best way to communicate with them.

And some people like my art, so I’m including some of that as well.  Clicking on the images should open larger versions in new tabs.

If you belong in neither of those categories, why are you here?

Day 1:

Really, it wasn’t so bad.  A sore throat and the sniffling start of a runny nose.  On the night before the start of Thanksgiving break, surely I could make it through.  But when I got to class, I discovered I was losing my voice.  What better excuse would there be to go home after the first 45 minutes and let the students have lab time for the last hour?

Did I feel a twinge of pain during and after eating dinner?  I’m not sure.  If I had, it would have seemed rather minor, I’m sure.  And rather normal.  Pain after eating had become a lifestyle during the past decade or more.

Day 2:  Thanksgiving eve

We debate.  Do I have a cold, as I think, or is it a flu virus?  Pain in the gut isn’t necessarily a sign for someone who has had acid reflux for over a decade.  Pop some Prilosec and chase it with some chewable Maalox.

And clean the house.  And brine the turkey.  There are so many things to keep me busy.  Complaining about pain is for sissies.  Right?  “Playing through pain” is the American way.

Day 3:  Thanksgiving

Cook turkey.  Check.

Bake squash.  Check.

Bake pumpkin pie.  Check.

Make stuffing and prepare cranberry sauce.  Check and check.

Eat?  Not so much.  A little bit of turkey, most of which remained on the plate.  The same with the cranberry sauce.  I had more luck with the stuffing and the pie.

But it really didn’t matter, I suppose, except maybe for the degree of pain involved.  It all eventually came back up.

And The Pain started.  The real pain.  Someone apparently snuck up behind me and drove an invisible butcher’s knife into my back, right between the shoulder blades.  It seemed to emerge right beneath my sternum.

Days 4 – 6:  The long weekend of pain.

Our doctor’s office was, of course, closed.  God forbid someone should get sick on a holiday.  Then again, I probably wouldn’t have called even if they had been open.  It was the way we were raised.  “You can take it.”  I’d had this pain before, back when Prilosec went over-the-counter and the insurer refused to pay for it (like it was not still the case that I was prescribed to take it daily, religiously) and eventually it subsided.  And eventually my argument made sense to someone and I got back on the purple pill as covered by the insurer.

But now I was taking the pill and it wasn’t working.  Neither was the Maalox, in either chewable or liquid form.

Three days were spent trying to survive.  Can’t eat.  Can barely keep down fluids.  Can’t sleep.  What else is there?

And the pain was spreading.  The pain under the sternum was radiating down the left side of my abdomen, following the path of my gastrointestinal tract.  Occasionally I could find a way to lay which would alleviate the pain between my shoulder blades.  But then it would just move to the left side of my lower back.  However I might try, there was too much pain in my back and gut to sleep for more than 15 or 20 minutes at a time.

I considered asking Debbie to hit me in the head with something heavy, seeking unconsciousness.  A concussion might be worth it.

Day 7:

As soon as the doctor’s office opened on Monday morning, I called and asked for an emergency appointment.  The best I could manage was to be double-booked to see Dr. Grobstein at 5 pm…and a promise of a call if something opened sooner.

Debbie had called in sick at City Tech; she had contracted my “cold.”  As the day slowly passed, I tried desperately to nap a bit.  Eventually I was rewarded by having my appointment moved to 4:30.  Debbie canceled her evening class and took the other appointment.

I can’t promise exact reproductions of events and discussions from that point on.  Things were getting worse.

Naomi poked and prodded.  She gave a list of possibilities:  gall stones, blocked bile duct, pancreas or liver problem, aortic aneurism.

Not that any of them sounded good, but really?  Aortic aneurism?  Debbie was told she probably had “a bug” and that she should rush me to the emergency room at Mountainside Hospital in Montclair, where Naomi was on staff, so she would be able to monitor my progress better.  Naomi also said she would call Dr. Padma Alli, who was the surgeon Debbie went to in order to have her breast biopsy done.

At the emergency room, triage jumped me to the head of the list and I was put in a bed…for hours.  Debbie got to remain by my side.  I was once again poked and prodded and was scheduled to get an ultrasound, an EKG, and an MRI.  First blood work  showed that I had a massive infection and that my sodium level was passing through basement level.  I recall that my temp was only 100.2, but my blood pressure was extremely high.  Asked if I were in pain, I agreed that was so and was told they would put me on dilaudid.  I had been given demerol in the past with not altogether agreeable results, but had never had dilaudid.  So they put in a saline IV drip and shot the dilaudid through that.

My temp went through the roof.  I was cast into a cloud of dizziness.  Having not been able to eat for days, there is no reason I should have had to, but vomit I did…over and over and over again.  And each spasm was egregiously painful.

Apparently some people have this bad reaction to the drug.  Really?  Nice to tell me after the fact.

People came and went, seeking more history.  One of the people was a bean counter.  I developed an instant dislike of him.  Someone asked if I had ever had abdominal surgery before.  That’s not a question one can lie about in this situation, so I reported my sex change in 1994 and the partial vaginal prolapse when I went into a sodium tailspin in 1998.  Those statements in my paperwork would come back to cause painful events in the next couple of days.

The EKG guy missed out twice because he arrived when I was puking.  So it never happened that night.  The ultrasound was extremely painful because of the pushing upon the places where it really hurt.  The MRI was massively discomfortable since I was required to lay perfectly still flat on my back, feeling as though I had had a stake driven though the middle of me.

I just wanted to be unconscious.  Or dead.  Anything to stop the pain.

In the dribs and drabs between those events, time was passing and I still had no

room assigned.  Debbie was waiting for that to happen before she could go home.  I sent her home at 2 am.  I didn’t want her to be driving half asleep.  By then, they had a room for me…or so we were told.

After she left, the room was canceled.  It was decided I should be in ICU rather than not.  Great.  Debbie would be calling in the morning and be told I was in intensive care.  Just what she needed to hear.

Day 8:  Surgery

Of course, there wasn’t a spot in ICU available at the moment, so I had a couple of more hours to wait in emergency, where it is never quiet.  I spent the time listening to the monitor on the patient in the next room to the right, which seemed to be altogether way too irregular.  I wondered if Death were hanging nearby.

Somewhere during the early morning hours, two residents spoke to me.  A man and a woman of Indian heritage, if not actually from India, it was clear that neither one of them had spoken to a transsexual woman before and decided to use my presence to increase their knowledge base.

Eventually I was transfered to the ICU, hooked up to numerous machines, and put to sleep for a few hours.

In the morning, I overheard from my bed that people were calling about me and being told that they couldn’t give out any information.  I immediately rang for a nurse and instructed her that my civilly united spouse was entitled to any information available and that I was concerned about her reaction to me being in ICU, unlike what she understood when she left the previous night.  The nurse called Debbie and told her how it was going.

At that point she probably had more data than I did.  I was mostly learning my condition by eavesdropping.  Although I suffer from decades of severe tinnitus, it was not hard to hear conversations just outside of my room.

The resident mentor…or whatever they are called (the doctor who takes the residents on rounds and interrogates them)…stopped outside, read from my chart and asked a few questions.  My Indian resident duo mentioned my sex-change.  The mentor asked them how it might be relevant.  I didn’t hear the response.

I did learn, however, that I had a massive infection of the gall bladder and my hiatal hernia had swallowed over half of my stomach…which may have been a main cause of the infection.  I also heard that if the infection spread to my pancreas, that could be fatal.

As in deadly.  Kaput.  Shedding the earthy container.  Going through the door to who knows where.

Some of that was repeated by the head doctor of the ICU a bit later…though he didn’t mention the death part.  A cardiologist came by and said that the ultrasound and MRI showed no structural defects in my heart.  But he said he hadn’t seen the EKG yet.  I told him that one hadn’t been done.  So within a few minutes, I was hooked up to another machine and an EKG was, in fact, completed.

I discovered that two of the machines near me interfered with each other.  The blood gas finger connection would fluctuate if I touched the nurse call button.  That caused some panic since there was suspicion I was having arrhythmia.  An echocardiogram was ordered to see if it would be safe to operate on me.  It didn’t happen that day, but was to prove to be a painful experience in what followed.

Debbie arrived in the afternoon.  So did Dr. Alli.  SHe was focused on the gall bladder.  Apparently she hadn’t noticed the hiatal hernia and when I mentioned it, she said she would take a look at the test results again.   But the immediate concern was the gall bladder infection.  She would try to remove that laparoscopically.

I was taken to the OR prep room, where the wait seemed interminable.  Fortunately Debbie got to come in to wait with me.   I met with the anesthesiologist, the lead OR nurse and yes, the bean counter guy again.  And Dr. Alli came to see us again.  She said she was extremely concerned about the “humongous” hiatal hernia which had swallowed much of my stomach and part of my pancreas, but it was beyond her skills…and probably beyond the resources of this hospital, to fix it.  She then went over the procedure and explained that they might have to actually cut me open more if the situation warranted it.

I was eventually rolled to the ER and laid out on the standard operating cross.  Once again (as in surgeries past), I was unconscious before the tubes went into my right arm.

I awoke in Recovery a few hours later, screaming in pain.  They put me back to sleep.  I remember struggling to breathe.

Eventually I was settled into a room on the fourth floor.  I was connected to an IV saline drip, oxygen, and my abdomen was wrapped in a tight elastic band, I guess to hold my insides together.  All I know is that it hurt like hell.  To this day I wonder if one of my ribs may have been cracked.  I still feel that pain.

Day 9:  Sleep was fitful though the night…but there was some, which was a relief.  I recall having a splitting headache.  And the regular visits to take more blood and measure more data began.  And begging for something brought me a diet ginger ale, which I savored.  I can’t say that all of my interactions with the nurses and physician’s assistants were pleasant.

I remember events.  I can’t necessarily put them into correct order.  Many of the them were no doubt mundane in the daily life of a hospital.  They are of more importance to people not comfortable with hospital culture.

The headache thing is one of those.  According to Debbie’s research, it was likely a a symptom of my low sodium level.  It took me 24 hours of complaining about it…and then my partner speaking to the head nurse at the station…before someone finally gave me a Tylenol 3 to help make it go away.

The incidents which bothered me the most occurred in the afternoon.  Someone from “transportation” brought a wheelchair to take me to have an echocardiogram.  Since I had already talked to the cardiologist a few hours earlier and been given a clean bill of health with regards my heart, I asked if this were a mistake.  I was told it was supposed to have been done…before my surgery.  My complaints that this was therefore unnecessary fell on deaf ears.

The wheelchair was too small for me.  Instead of getting a more fitting one, I was forced into this one by the woman from transportation, who several times referred to me as “he” or “him”, even as my breasts became visible when I had to squirm into the chair.  As I was being pushed down the hallway, she spoke to a small child waiting for an elevator and referred to me with male pronouns again.  Finally I asked her to stop doing that.  She denied that she had.  When I assured her that she had, several times, she blew it off with something muttered about transsexuals.

She abandoned me in the corridor near where the echos are located.  The lady technician there was quite nice and completely at a loss about how come they painfully squeezed me into this size of chair when much bigger ones were available.

After the test, a different woman from transportation came to take me back to my room.  She asked about my surgery in a friendly manner.  Then she asked who my surgeon was.  When I said it was Dr. Alli, she said,”Your surgeon is a Muslim?”  When I said that I didn’t know and didn’t care, she responded, with a sneer on her lips, that “With that name, she’s a Muslim.”  

Dr. Alli is, in fact from India.

When I returned to my room, I discovered that they brought me garlicky chicken for lunch, even though I had quite explicitly insisted many times that I was allergic to garlic.  I tried to salvage a bun and some lemon pudding.  I later discovered that the lemon pudding was salty.  Horrid stuff.  when I complained to my nurse, she promised to and did bring me another ginger ale.

Day 10:  Thursday was “boring” in addition what had become the usual “painful.”  I tried to spend as much of it as possible napping.  But that was, of course, interrupted by doctor visits.  The doctors were all sure I would be discharged.  They just avoided giving me a fixed time.

I tried to make sure to have discussion about the hernia problem.  This seemed serious to me.  The appearance of the thing suggests that it has been an untreated problem for about 20 years.  What was originally no doubt a very small problem and could have been fixed rather easily is now a major concern.  And it is growing in the telling.

Eventually, I was released, with instructions to see Dr. Alli in a week or so…and I was allowed, as much as possible, to go to work.

Day 11 and onward:  I was homebound for the weekend, but spent the entire next week as much as I could as a normal school week, except for the fact that it was, of course, the last week before Finals.  I had to adjust some assignment schedules and cajole students about their missing work…and the work that had not been done while I was absent.  What’s up with that?

One of the concerns about being in the hospital was that I was not given my normal pill regimen:  estrace, synthroid, zyrtek, singulair, prilosec, toprol…  Missing the first two menat I had been suffering from hot flashes and night sweats for a couple of days.  That eventually subsided.

When I finally met with Dr. Alli again, I learned that the latest interpretation is that my entire stomach has passed into my chest, as well as part of my pancreas.  This is not good.  I don’t know where we are going from here.  Reconstructing my diaphragm and putting the pieces back where they are supposed to be will be complicates and require a much bigger hospital and a tam of experts.

The question, just as it was when I asked to have the problem fixed during the 90s, is whether the insurance company will allow the procedures involved to be covered.  Back in the wayback, they did not, because “most people your age have this problem.”  Apparently the strategy was to allow it to get worse…and see if I might die before it would need to be fixed.

I have another doctor to see on December 22, my primary care physician in Dr. Grobstein’s office.  And Dr. Alli again on January 12.  

40 comments

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    • Robyn on December 14, 2009 at 2:01 am
      Author

    …for as much as possible, but some days are better than others now and this is not one of the good ones.

  1. I am so happy to hear from you.  I’m so sorry you are in such distress.  Please accept my wishes for a complete and quick recovery.

    I miss you.

    • Robyn on December 14, 2009 at 2:06 am
      Author

    …I can actually relax again in about 10 days.  Then maybe I will be able to do some more writing.

    • Edger on December 14, 2009 at 2:38 am

    I’m glad you made it through all this, as far as you have so far, and I hope things continue to improve for you, and glad to hear that you are able to do your work at school.

    Take care, as best you can, eh?

    • frosti on December 14, 2009 at 2:41 am

    If you had called me, I would have told you it was your gallbladder, not that I can abide telephone medicine at all.  I am sorry for all of your troubles.

    Mike called me with his problems, and I can’t fix his messed up life. Sigh.  He never calls me unless he wants something.  I am not sure if he is suicidal, but I asked him last week and he said no.  Knowing I am on vacation in St. John, he texted me to ask me if I wanted Dad’s baseball memorabilia.  

  2. Many in the community here hope for your healing and recovery.

    • TMC on December 14, 2009 at 2:49 am

    You mentioned in a comment that you had been ill, had surgery and were facing more. That was quite an ordeal, I assume they removed your gallbladder. You have my sincerest wishes for a successful recovery. Best wishes to you and Debbie

  3. … for letting us know how you are and what happened.

    May you and Debbie be all right, and I wish you a complete healing.

    ((((((((((((Robyn))))))))))))

    ((((((((((Debbie)))))))))))))

  4. possibly facing more surgery.

    If that surgery is necessary, hope you get expert doctors and that the surgery will go well. Also, may your recovery be fast and uneventful.

     

    • Alma on December 14, 2009 at 4:00 am

    Just saw this a few minutes before time for me to leave.  I’ve only made it up to the begining of day 8.

    (((((Robyn & Debbie)))))

  5. Im so sorry you had to endure such pain and then the  stupidness on top of it. Sending thoughts and prayers for you and Debbie both as you make your way through the recovery and the next steps.

    Im so impressed with your ability to write this “story” so well. I had some stories in my mind this past August with my experience in the E.R. and hospital with breaking both wrists… by the time I could type well enough, poof! heh.

    But I will tell you this much… I HATE being in the hospital! There I was with TWO BROKEN (and useless painful) wrists and those dumbass aides… oh my god. Rolling the tray of Food to me (and I was HUNGRY!) then scadaddle. Hello, I CANNOT pick up the frikkin fork! So I had to just sit there and smell it and wait for someone to return and feed me. I had to be “spoon fed” for more than a week actually. And also, the very first night morning after the surgery… they … so ridiculous… I had a Patient (I forget what its called now) I had an I.V. and this button push of morphine, programmed to only allow every ten minutes or something but you had to PUSH THE BUTTON with, yes, your finger. Again, I just laid there in agony with the Thing I Need within reach but not accessible. Torture. Im sorry but it was mental torture.

    So I am not keen on the idea of ever having to be there again and you truly have my sympathies for those aspects.

    I cannot stress enough how important it is to have family & loved ones at your side. My sister was a godsend.

    May you be surrounded with love and healing, Robyn, and my best to Debbie too.

  6. and hope you heal well. I am amazed that you are writing and posting. Every morning when I come here my fingers forget your gone and I scroll to find your art. I was so glad to see you here tonight. I’m so sorry you are going through this health crisis but your a strong person and have some powerful Chi. I hope while your healing you post some poetry and art as we can shine your energy back to you.      

    • Alma on December 14, 2009 at 7:36 am

    You’ve really been through the wringer lately.

    I’m assuming when you go to your primary care physician the 22nd that they will set you up with a surgeon that can do the work you need done?  I would think its progressed enough that the insurance will probably pay for it now.  I really dislike insurance companies.

    I’ve missed you dear friend.  I wish your time away had been happier and healthier.

  7. Wow, so sorry to hear about your health problems.  Just: wow.

    Wishing you all the best & hoping that you get superb medical care & that your insurance company is better than the usual scumbag outfit.

    Wow.  Get better soon, okay?  And please keep us posted when you feel well enough to blog.

  8. I hope the fix is fast, calm and inexpensive.

    I hope to be accepted to PA school in two years.  I hope to be better than the PA’s you encountered.

  9. I’m amazed that you’re back to work so quickly! Sending you prayers and healing thoughts, that the doctors will have the right plan to get you healthy again. Please keep us updated, and thanks so much for sharing your lovely art with us.

  10. I haven’t been on line much lately, but I missed your art work so I went to look for it. Thought you had flown the coop when I couldn’t find you.

    Sorry to hear about your illness and the very bad hospital experience. Sending you my best wishes and a better experience next time. <<< cyberhug>>>

  11. Sorry you had this experience.  Wish I could offer insight or advice but not my area of knowledge medically speaking.  

    • pfiore8 on December 14, 2009 at 5:31 pm

    this is an incredible story.

    i will keep good thoughts going your way.

    i didn’t even realize you’d been gone, as i only stop by now and then. glad i checked in today.

    also regards to Debbie. this can’t be easy for either you.

  12. Robyn, I am so very sorry for everything you’ve been through the past few weeks. If there is a Hell, this kind of sounds like how it would be. 🙂 Well, that and your doctors would look like Fred Phelps and Rick Warren.

    I’m very glad that they eventually let Debbie in on what was going on with you, but to have to deal with others’ discomfort of you being a transsexual when you’re in the hospital? That’s beyond the pale. Wtf.

    I wish you a safe and speedy recovery, and I’m sending you and your family my thoughts and love. Please post again when you can, but no pressure!

  13. The transformations we, and the world, are all going through are dramatic and hard.

    But trust you, my dear friend, to top us all!

    Many many many Blessings and much love and we will see on the other side of this.

    Til then, PLEASE do nothing but take care of yourself!!!

    Photobucket

  14. I’m happy to hear that you’re ok.  What a dreadful series of events.

    Just wondering: is there anything those of us here can do to be of help? Please let us know if there is.

  15. What a friggin’ ordeal.  All so scary!

    I hear you, it’s not enough to have the health worries, you have to worry about whether the insurance companies will cover certain procedures.  

    Here’s crossing fingers on all accounts!

  16. I can now better understand what renditioned people might feel like in a limbo of pain.

    I just spent three days in a hospital visiting with my wife who was in an accident.

    She got very good care yet I couldn`t wait to have her home again.

    With all the days you were in hospital & the poor treatment you recount, by professionals even, I know for sure I would now be in jail if it was my loved one who had to go through what you did.

    Did all the people who were extremely rude, remove their hearts before starting their work shift, or are they just irreparably ignorant.

    I`m very sorry to read of what you`ve been through, not to mention, Debbie.

    Get better soon, & I hope you`re not allergic to these ‘Get Well Soon’ blooms.

    DSCN1188

    • Miep on December 15, 2009 at 11:26 am

    totally shitty and scary experience.

    Great art, though!

    You hang in there. I’d wondered where you were.

    I’ve always felt a kind of affinity for you because your writing helped me to open up to being kind of gender-strange.

    That’s not the right word, I know. But I don’t know the right word. Sometimes ya just don’t.

    But it was freeing, and you helped.

    Thank you.

    love,

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