Desperately Seeking Breathing

Last week, while we were all already dealing with a terrifying hurricane and no power for days, I began experiencing dramatic shortness of breath after only taking a few steps.  I struggled and struggled, trying to convince myself it was just something I was imagining, even though I was taking deep, prolonged gasps for air with the least bit of exertion.   I was attempting to persuade myself that I was simply deconditioned and if I pushed myself just a little bit harder I would end up with Olympic level lungs.   Finally on Sunday, Mary Kate announced she couldn’t watch anymore and she called 911. 

I actually conceded to ride in an ambulance, because I knew I wouldn’t have made even the few yards to the car.   And I agreed to go because all through that whole brutal week, one particular exchange had loomed in my memory.

Two weeks before Christmas in 1993, my husband Dennis offhandedly mentioned his past bout of pleurisy was bothering him.  What do you say to someone who you have been married to for 17 years and who is notorious for not taking care of himself?  “What are you telling me for?  Call the doctor.”  And he replied, “I will, right after the holidays.”  Well, he never made it to the holidays.  He died of a massive heart attack on December 20.  He had no idea he was mortally ill.  He never would have left his kids behind if he had had any choice in the matter.  These are the things that went through the head of this particular notorious patient, over and over again, as I struggled to breathe.

So off I went, sirens and all.  I was too scared to be mortified.  Well, I was too scared to be really mortified.  I truly was more relieved than anything.

I suppose because I grew up with a world class hypochondriac who I never believed a word from, I always assume that I will not be taken seriously.  And, as a matter of fact, I often am not.  Part of it is, yes, due to managed care and the time constraints that limit practitioner revenue.  But I think it is far more because healthcare providers are jaded, bored and do not listen.  (My PCP is an incredible exception, but more about him another time).

I lay on the gurney in the ER, wearily waiting for the first in a series of MD’s who would ask me the same questions, few of which would be apropos and who would not listen to the answers anyway.  Then curtain discreetly opened enough for a young voice to ask “Mrs. Cooper?” And he leaned his face in just a crack, with a raised eyebrow.  He was the most adorable thing I had seen in a long time and I nearly told him that.  Way to start an assessment by being defined as a dirty old lady.

He was cute, as I said, but mostly he just exuded niceness.  He was polite and sensitive but not smarmy.  He listened to my responses and then repeated them back to me in different words!!  Agghhh!! He got it!  When he came back with my lab results, which indicated I was in dire need of a blood transfusion, he looked so concerned I thought he was going to cry.

I was going to be admitted, so I was taken to a new unit the hospital had just opened to facilitate patient back-up.  Because oversight of this department was my job at another hospital, I knew what they were trying to do, but they were failing miserably.  Beds in our local hospitals are like gold.  When you have a high population of elderly and poor, as you do at the Jersey Shore, ER’s get backed up very, very quickly.  A hospital only has so many beds.  Most of them are dedicated, such as orthopedic, surgical, or mother/baby.  You can only place that kind of patient in that bed.  If your patient has a co-morbidity, such as a communicable disease or infection, they have to be isolated or put in a room with a patient who has the exact same diagnosis AND is the same gender.  So your bed possibility is reduced even further.  It is a constant juggling game.  Sometimes, the Gods smile and you can fit everyone together like a Chinese puzzle.  Other times, it is a nightmare of vast proportions with 20 seriously ill 80-plus year-olds languishing in the halls of the ER.  Within hours you have family members in your office, who you completely sympathize with, screaming at you to get their grandmother out of the ER corridor where she has been for 20 or more hours.  But you literally have nowhere to put them.

So up pops the Transition Unit idea (that is what we called it at my facility, it has other names, such as the Discharge Unit, which confuses the hell out of everyone because the patient is only being discharged from the ER to the hospital).  Anyway, the thought process is to get the patient completely assessed and prepped and tied up with a little bow so they simply have to be moved into the proper bed when it becomes available. The patient gets to wait in a comfortable bed in a nice little curtained cubicle.  Sounds like a great idea, doesn’t it?

Only it doesn’t work, except as a sort of a highway rest stop, without the tasteful souvenirs .  The patient continues to suffer in limbo.   Patients are not discharged from the main hospital any faster, and that is where the backlog starts.  So patients aren’t stuck in the hallways anymore, but they do get stuck in these way stations.  They are uncomfortable and there is no privacy.  When you are already sick, you feel simply miserable.  Patience frays, family members lose their tempers.  Frequently with each other.

I ended up in the Discharge Unit for about 24 hours.  Every conversation with every specialist who came to talk to me was overheard by the entire place.  The space assigned to each patient, divided by curtains, is approximately 8’ by 10’.  And I am being generous.  The guy in the cubicle next to me snored all night long, interspersed with shouting out obscenities.  Charming.   The little old lady in the cubicle on the other side of me was enduring the pain and confusion of dementia and she whimpered the whole time.  And periodically snorted violently.   I spent the night in contemplation and prayer.  I contemplated holding pillows over their faces and prayed for forgiveness for wanting to kill them.

Two members from entirely different families came to actual physical blows as long simmering issues exploded over their sick, elderly relatives.  Mom always did like you best.

So by the time I was sprung, everyone else had already been moved along with the indelible memory of when my last menstrual period was, if I was having difficulty urinating and if I was sexually active, among other delightful tidbits.  For, additionally, the subtext in every single solitary consult was Fat.  Did you know you were Fat?  How long have you been Fat?  Did you know being Fat can make you sick?  What are you doing to stop being Fat?  Fat, fat, fatty fat fatty.  Fat.  I am ready to stick my head in the oven, but I know if I ask where the kitchen is they will think it is because I am Fat.  I turn on the television power for the Internet and notice for the first time the screen is personalized.  Name: Marie Cooper, Room Number: 6007, Overweight.  WHAAAT?!?!  It’s even on the effing TV?!?!  Then I see this is the weather: OverCAST.  Oh. 

For a horrible minute, I thought even the Internet was on my Fat Case.

 

 

On the plus side, my room is spacious and bright.  I am getting great care from kind people (for the most part).  Mary Kate brings me flowers, and better still, brings me Madailein, who charms everyone by saying “Hi Da Da!” when my male tech walks in the door.  He did turn a trifle pale.  My dear friend Kathy from high school comes by.  Deacon Gail brings me Communion.  Christine comes by but I am at a test.  She comes the next day in a blizzard!!  I am surrounded by love, including virtually on Facebook with dozens of kind and encouraging thoughts.

I go for test after test, but I am still so short of breath it is almost incapacitating.  While talking to the pulmonologist, I realized that the litany of symptoms is a mirror of the transverse myelitis I had eight years ago. I suggest that to her and she happily agrees it is a possibility.  I started the IV steroids yesterday, too soon for any improvement, but fingers crossed.  On the other hand, I am feeling overwhelmed that the MS is causing such significant and crippling symptoms.  The prognosis will not be a good one.  People who have lung involvement end up on respirators.  I am so scared.

One of the people I encounter here is a jolly woman who brings me my dinner tray.  I am very down about the whole Fat thing and I say so.  She puts her hands on her hips indignantly.  “Honey, you are a lovely looking woman!  Beauty comes from the inside.  No one has a right to make you feel bad about yourself and you need to tell them that.  You need to say ‘That makes me feel bad. Don’t talk to me like that!”  I don’t care who it is!”  She shares some of the incredibly overwhelming circumstances she has struggled with and I am so touched by the generosity of her spirit.  I feel better simply from being exposed to her spontaneous kindheartedness.  It is such a gift to have someone like this placed in your path when you most need it.

And then there was the blizzard!!  A week after the Jersey Shore was devastated by Hurricane Sandy, we are hit with a pre-season blizzard.  People who have just gotten their power back after six days lose it again.  No one is prepared for eight inches of snow.

The view from my hospital room on Wednesday.  I know it says Thursday, but I am not operating on all four burners right now.   So that is a big FAT mistake, ok?!?

And the view this morning approximately 5:30:

Looks like that pesky demon may still be there.

Continuing to pray for strength and grace and praying the same for all of you, my wonderful virtual true friends.

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My Journey, Part 4

And where was all this fun leading? The second day I was in the hospital, Dr., we’ll call him Green, the neurologist, advised me I had something called Transverse Myelitis. I asked, what about the Multiple Sclerosis the ED doctor mentioned? “Oh,” he replied casually, “You are too old for Multiple Sclerosis. My oldest MS patient is 45.” Well that made me feel better, sort of, except for the “too old” part. I had never heard of Transverse Myelitis and immediately called my sister to look it up on the Internet. The results she read me were horrifying, with causes like AIDS and Lupus, and dire prognostications of permanent, crippling disability. It was also a symptom of MS, but I figured he had ruled that out for me.

Transverse Myelitis causes a demyelation of part of the spinal cord. The nerve coatings are destroyed by something, infection or inflammation, interrupting the proper flow of messages from nerve to nerve. The spinal cord damage would be permanent, with varying degrees of recovery, ranging from nearly complete to none. The symptoms were everything I had: tight banding sensation around the waist and chest, parasthesias, back pain, urinary dysfunction and Lhermitte’s sign, the electric shocks I had noticed months earlier when I flexed my neck. What it affected depended on where the damage was. Mine was on my cervical spine, so it impacted everything below my neck, including my heart rate and breathing. There was no cure, but it sometimes responded to steroid treatment and the symptoms could abate. The steroids were most likely to work when the TM was caused by MS.

While he continued trying to talk me into the Lumbar Puncture, Dr. Green asked me what rehabilitation hospital I wanted to be sent to when I was done in the acute care hospital. It was as though he were speaking in tongues. I could not go to a rehabilitation hospital, I wanted to scream, because I am going HOME! Home, walking, on my own two feet, from which I shall go back to work. Instead I just bleakly parroted, “Rehabilitation hospital?” Yes, he replied because Transverse Myelitis usually causes such significant disability… his voice seemed to retreat as I just heard blah, blah, blah, blah. I finally was able to focus as he said, so we’re going to start you on steroids. Now, steroids can cause significant sudden weight gain. “Great”, I said, “I always knew if I ever got sick it would be with something that would make me even fatter than I already am.” He paused for a second and I could see him thinking, “Oh, right, it’s this one, who thinks she’s funny.” He continued, “Anyway, we’ll get you started on that and see what happens.” Wonderful, I love to take powerful, dangerous drugs and see what happens. He left and I waited for my steroid pill.

About ten minutes later, the nurse came in with a bag of Solumedrol and started to hang it. “I didn’t realize Dr. Green meant IV steroids.” “Well that’s what he ordered.” Ok, no problem, I thought, I just wish he had told me. A few minutes later, the nurse came back in and said, “Here is your Prevacid, Mrs. Cooper.” “But I don’t take Prevacid.” “Oh, you’ll need it with the Solumedrol.” Ok, no big deal, I just wish he had told me. An hour later, the nurse came back in and said I have to check your blood sugar, it can get a little high with the steroids. Boink, he stuck my finger and wordlessly left the room. Three minutes later, he was back with a syringe of insulin. “Are you kidding me!?!” I blurted, “Why didn’t Dr. Green tell me any of this?” I simply received a nasty look and no answer. My blood sugar went so high I would continue to need insulin 4 times a day for 3 weeks.

The next day, when I lost it before the lumbar puncture and Dr. Green came to my room to talk me into it, I lit into him. He sat in my bedside chair and coolly crossed his legs as I ranted. “One sentence, that’s all it would have taken, one sentence: ‘Mrs. Cooper we are going to start you on IV steroids because that works the best; it might bother your stomach so I’m going to order Prevacid and it sometimes can cause your blood sugar to go up, so you might need insulin.’ How hard would that have been? Now I feel as though I am being bullied into this test and I have no confidence in anything you are telling me.” His gang of residents looked nervous, shifting back and forth on their feet, waiting for the outcome of what must have been, for them, the fight of the century. A lowly patient challenging their high and exalted mentor? Who would win? Would he maintain his status? Would they fix me by writing “Freaking Maniac” in my chart so it could haunt me forever? By this time the nursing supervisors were all in the room too. Everyone held their breath. It was neurological High Noon.

Dr. Green casually adjusted the beautifully tailored trousers on his crossed leg, subtly reminding me that I was the one in bed in my p.j.’s, with a hep-lock in my arm and barely able to walk. He went into a very patient and condescending explanation of why IV Solumedrol was better than oral and what he was looking for with the spinal tap, most of which I really already knew and could have remembered if I wasn’t demented with fear. Completely deflated, I murmured, well I just wish you had told me all this yesterday. Our audience simultaneously exhaled in relief. Order would be maintained in the hospital. He withdrew triumphantly, another nut job successfully conquered. I wouldn’t be surprised if he scratched a little notch in his reflex hammer. I obediently gobbled up my Valium and was taken to be punctured.

THE OTHER SHOE DROPS

I spent five days total in the hospital and would have been there longer if I hadn’t talked my regular doctor into letting me have the last two infusions of Solumedrol at home. He was very unhappy and said he had never let anyone go home with IV steroids and four times a day insulin coverage, but, he said, looking at me dubiously, he had confidence in my clinical skills.

Dr. Green came in the day of my discharge to tell me that I did not seem to have an infectious process causing the TM and it was a very good sign that I was responding so quickly to the Solumedrol. I was now able to take faltering steps and had regained some strength in my legs. I was weak and still numb, but I was going home! I went back to work four days later, sooner than I should have, but with no sick time I couldn’t afford to lose any more salary. After a few harrowing days, I started to feel almost normal, confident that this was a one-time deal, a freak occurrence. Then I had my follow-up visit with Dr. Green and the world I was in that had already been knocked off kilter was turned completely upside down.

He outlined my symptoms: Transverse Myelitis, which caused a demylenated lesion on my spinal cord, old MS plaques on my spinal cord, the Lhermitte’s sign, positive lumbar puncture, a suspicious lesion on my brain, episodes of dizziness, numbness and oh, yes, I forgot to mention, frequent falls. Speaking slowly and deliberately, he said these are all things that appear to be very strong indicators of MS. “The MS I am too old to have?” “Yes.”

There is no one test for Multiple Sclerosis. It is a diagnosis of inclusion and exclusion. They exclude anything that could be causing the symptoms, like infections or injuries, and include anything else that could cause the symptoms, such as lesions on the brain and spinal cord, positive spinal taps and medical history. All the things I had. The last pieces in the puzzle are confirming tests that show a lapse of time during which new lesions develop. That January, I seemed to be free of any progression. But in April of 2006 I was bowled over and back in the hospital with a relapse. There were new lesions. It was time to face the reality that my life had changed forever.

In an attempt to lengthen the time between inevitable relapses, for months I gave myself a shot every night. The shot itself was nothing. But then I would feel the medication, which is caustic and created a brutal reaction. It would burn for more than an hour, like dozens of wasps stinging over and over, leaving me with sore, itchy, egg-sized lumps at every injection site that lasted for days. Even with the medicine, I kept getting sick. It wasn’t working. Now I receive a monthly IV infusion of another medication that causes me to be immunocompromised and has the potential to cause a rare, fatal brain infection. It is the drug of last resort for MS patients because it is so dangerous. Such fun.

The reminders of the damage to my spinal cord and brain, while less intense now after time and steroids have done their job, nudge me daily with relentless pokes. My hands, legs and feet twitch. I have muscle spasms that wake me up and cause my limbs to have a life of their own. The pain from damaged nerves can be merciless. Balance is a foreign concept. However, using a cane gives me a gnome-like appearance (see aforementioned short and fat references) and my vanity resists the device. Unfortunately, my body does not resist gravity, making that appendage an attractive alternative to potentially bashing my face on the ground.

I have to frequently “rest”, like the heroine in a Victorian novel. Numbness and debility are my reward for overdoing it. But overdoing it was a lifestyle for me. I am no longer capable of doing it all and I still cannot accept that. I am devastated.

So now I stumble forward, almost literally, waiting for the unknowable. I have worked hard to create a life of order and harmony for myself and my children. I have been tenaciously autonomous. But the illness I have, this disease I face, obliterates these things. There is no predicting its course, there is no pattern. It is all the things I have most feared through my life and it is what I have fought hardest against, uncontrollable and disorganized. There is almost no illness that would be a better fit for my deepest dread, something slow, incurable and complicated, with the potential of forever robbing me of independence and dignity.

My friends tell me if anyone can handle this, it would be me.

Time will tell.

The Dreaded Steroids

I am having a flare up of Transverse Myelitis, which was the condition I developed that led to my diagnosis of MS.

Ugh, what a bummer.

I am one of the lucky ones. Although TM initially paralyzed me, I responded to IV steroids and got better. Better-ish. It left me with lots of deficits, dysfunction, numbness and weakness. But some people never recover at all and are crippled forever. Some even need to be on respirators.

This scary stuff is caused by lesions on the spinal cord that strip the nerve cells of their protective coating, the myelin. It’s called demyelinating. Your level of illness depends on where your lesions are. My biggest one (yes indeed, I have an entire collection back there) is on my cervical spinal cord. That causes just sooooo many things to malfunction. Ahhh well.

An intravenous steroid, in this case Solumedrol (IVSM), is the thing that will calm the lesion down and make me feel better. But it comes with a price.

First, after a few days of steroids, I am, let’s see, how can I put it? A raving lunatic. No sleep, non-stop talking, non-stop activity. A VERY clean house. Let me tell you, this is not fun to live with. The one child (a 22 year old CHILD; oy) who still lives with me (who I am trying to pry out with a crowbar; does anyone want her?) just rolls her eyes. This will be my fifth course of IVSM in three years, so she is used to it by now.

Then there is the physical stuff. A hep lock in my arm for days, no showering, nasty taste in your mouth, potential kidney damage, potential bone damage, potential diabetes, aching all over like you have the flu and feeling like you have been hit with a truck when it is done. The first time I was on IVSM my blood sugar went so high I was on insulin for three weeks. Some people develop a ravenous appetite. Amazingly, I don’t. I actually lose my appetite. Cool.

But it usually does help, so there is that.

Maybe, as I am up all hours with steroid induced energy, I will write dozens of brilliant and witty posts for my blog!!! Now that is something to look forward to.

This is a short video related to Project Restore at Johns Hopkins, which is doing research to develop a cure for demyelinating diseases like Transverse Myelitis and Multiple Sclerosis. Alysse describes exactly what it is like to develop TM and the losses we experience when we have it.