My Hero, Zero

The pacemaker technician stared at the print out. She showed it to her supervisor.
“Rachel, you’ve had zero episodes in the last six months!” the supervisor grinned. I tried to understand what she was saying.  My pacemaker is set up to pace me up to 100 beats per minute if my heart rate drops rapidly. This is to prevent asystolic episodes like the one they caught on my Tilt Table Test when I first got sick. It’s been my security, my safest and most effective medical intervention over the last seven years. It even got to the stage where the wiggly worm feeling in my chest when I have a pacing episode was comforting. But come to think of it, I haven’t felt that for some time…

“Should we check to see if it is working?” I wondered aloud.  They nodded, one of them had never seen a zero reading before and it was important to make sure it wasn’t because something had gone wrong with the pacing program, the battery, or something else. So they looked at the data, ran the tests, paced me a few times to make sure it was behaving according to the parameters. They commented that all my stats looked great, like a young woman.

And a happy bubbling thing broke the surface of my brain.

ZERO!

A picture of me making the hand symbol for zero

When I started immune suppression at the beginning of this year, I couldn’t even imagine a result like this one.  But there it is. Concrete evidence that things in my body have changed.  I don’t understand it. But I love it. And I have a new favourite number.

Zero is my hero.

 

The Smear Campaign

smearcampaignWhen I embarked on my six month steroid treatment, I was told by numerous people in the medical profession that I couldn’t safely stay on them any longer than that.  As it became clear that the infusions were making a massive difference in my quality of life, I began to wonder why we couldn’t just stay with them.
They’re working!  So why not?”   I asked.  I would be a given serious look and a statement like “No, no, not a good idea long term”.  I was told that they effect bone density, among other things, and of course, you don’t want to have the bones of an eighty year old when you are forty, not if you can avoid it!  In addition, steroids are an immuno-suppressant, which is why they are working for me. One of the things my immune system does is erroneously attack my autonomic nerves.  It’s why I am sick. So suppressing my immunity reduces that misguided malfunction, making me feel better.  It’s just another convoluted body conundrum, my immune system is making me sick… but I still need it.

See, suppressing the immune system isn’t selective. The medication can’t specifically target the part of my immune system that isn’t working properly, it suppresses all of it. And that means that all the work my immune system usually does, battling infections and reducing the impact of other threats to the body, is compromised. I noticed it first in the little things. Small cuts and abrasions that took longer to heal and got infected easily. Eye infections, UTIs, coughs, colds and sore throats that took ages to clear. And then, a phone call from my GP.  Remember I had a smear recently? She said that the results, in combination with my steroid treatment, meant I needed a colposcopy.  So she referred me to the hospital.  I called them after I got my letter, asking if they had a date. The receptionist said that my appointment hadn’t been triaged yet, but based on the wait list I’d be seen next month. Then last week I had a phone call asking if I could come in the next morning.

A colposcopy is the next step after an iffy smear test.  It is a scope used to examine the surface of the cervix to better see the changes noted in the cells at the transformation zone, where the squamous and glandular cells meet.  The doctor uses a combination of acetic acid and iodine to observe changes that are indicative of a problem.  This screening service is so crucial, because it is an early intervention.

anatomical diagram of the colposcopy procedure
Source: www.pixgood.com

I had high grade changes in my smear results (possibly why my GP said, this). The colposcopy doctor found visual evidence of a bloom of pre-cancerous cells and biopsied the tissue for confirmation. She explained that around 80% of women contract a virus called the HPV (Human Papilloma Virus) back when they become sexually active (those stats are the reason behind the vaccination they’re giving all those teenagers).  Normally, the immune system is very efficient at handling the longer term cervical cancer risk posed by this virus. But when your immunity is suppressed, well, it’s much easier for nasty cells to proliferate.

Thankfully, there is an easy fix.

Usually it is a day-stay surgery with a local anaesthetic, a diathermy knife and a deft doctor.  It’s called the LLETZ Procedure (Large Loop Excision of the Transformational Zone) .  My doctor explained that, for me, it will have to be under a general anaesthetic.  That’s because although the previous gynaecological surgery I had was successful (the top and bottom walls of my vagina have held) the side walls have now prolapsed. It’s a bit more of a challenge for the surgeon so they’ll need me to be ‘out’.

So I guess, for me, the presence of those nasty cells was a loud and clear example of exactly why I can’t stay on those steroids.  I get it! And I am so glad that we have a screening service that finds these things before they pose a serious risk to the patient. Only 1:100 patients who present like I have will go on to develop cancer needing further treatment, so I feel safe and in good hands.
And lucky!

In New Zealand our cervical screening programme is free.  All women should be having pap smears at regular intervals.

I know there are a lot of reasons not to do it.  Having pap smears is not nice.  It can hurt and for some women it can be painfully embarrassing. For others it is a difficult reminder of bad past experiences in that region and can trigger traumatic responses.

Please find a way, somehow,  to have your regular smear.
It’s five minutes of unpleasantness that might save your life.

Have you had yours?

No Harm

Four years ago, in a neurology outpatient’s waiting room, somewhere in the southern hemisphere…

I’m your eighth patient today, here in this clinic.  Before that, you were doing ward rounds with your students, you’ve barely had time for lunch.  I don’t know this for fact, but I know you’ve seen a lot of patients from the slump in your shoulders, the way you don’t look up when I am too slow to follow directly behind you into your space.  You finish reading something on your computer, maybe it’s my record. You push your keyboard away, sigh and swing your gaze towards me. It rests on me for a nano second.  Then it flits to somewhere over my left ear. Your brain is busy, I can see that. Who knows what thoughts are travelling through your mind?  Not me. But I try to guess, trying to read your body language; trying to find the right way to talk to you based on the incomplete information in front of me.  My first instinct is to apologise to you, for making your day busier.  I give myself an internal faceslap. Your time is valuable, it’s true.  Mine has no monetary value.  The numbers a neurologist like you can earn are a reflection of your worth. But that thought doesn’t seem to cheer you.  You rub your temples and say:
“Exactly why is it you are seeing me!? You POTS people don’t need a team of physicians, you know.  A cardiologist should suffice.”

I’ve been waiting a long time to see you.  Hoping that seeing you is going to make a difference.  I hear you have a brilliant mind, that you might be able to help me. Waiting for this appointment has kept me going.  I know that my medical history is long. I know that the things that have been going wrong for me don’t seem to add up.  I know that I bring my burden of hope and lay it at your feet.  And I see that you don’t want it.  I wish I could have brought you in a cup of tea.  Might you have smiled if I had?  Might you have seen who I am, beneath the data on your screen?

“I am sorry,” I say, my voice barely audible.  “I have a neurological condition and I am seeing you because you are a neurologist”.

If you are taken aback by my response, you don’t show it. Your head swivels back toward your screen. “Tell me more” you intone.  So I do.  I tell you my symptoms as succinctly as I can while you scan through my notes. “hmmmm” and “yes, I see” and “ah”. The nods as we cover each autonomic oddity. You do a neurological exam.  We sit down again. When you look at me, it is as if you are seeing a puzzle. You’re analysing the information you have gathered. You are searching for the placement and order of the pieces so you can see the whole. The pieces suddenly slot into place.  Satisfied, you rock back on your chair. Your next sentence is certain and clipped.

“You don’t have POTS”.

Do I suppose, at that moment, that a cardiologist might not suffice after all? I look at you, wondering what is coming next.  But I am not surprised.  I never really felt like POTS was the whole story, it just didn’t fully explain everything. So I wait for your view of things.

“You have Pandysautonomia.  Pan means ‘all’ and Dysautonomia, well you know what that means, a dysfunction of your autonomic nervous system.  It can’t be auto-immune, because your blood tests are normal*. It appears to be progressive. You’ll be happy to know that breathing is usually the last thing to be affected.  You’ll continue to decline, and then, eventually…”   You don’t say the next part.  You tell me to go an do the things with my family that I need to do while I am still able. Then, you clear your throat, raise your eyebrows and meet my eyes, properly. You push your chair backwards and explain that you have no need to see me again, you’ll send a letter to my General Physician.

You stand, and as I look up, you ask,
“-any questions?”  
and I see that I am dismissed. My inner roar of frustration is silenced, replaced with a whimper as I survey the decline and fall of my future. The small feral creatures of uncertainty that populate my mind have grown into monsters in a few of your short sentences.  I stand, thank you for your time and leave your rooms.

I sink into one of the waiting room chairs.  I am shaking from the effort of holding myself upright throughout the appointment. I’m devastated. I thought you might tell me that all I needed to do was x or y.  I was even prepared to try z. The stress of the interaction has sent adrenalin coursing through my blood stream.  I feel the usual battery of autonomic warning signs.  I wait it all out, half reclined, embarassed, listening to the hammering of my pulse between breaths. I am suspended there, in the waiting room I am desperate to escape from. I think about how you must not know how terrifying you are.  How scary your words. How easily you could have reassured me.

You are already seeing your next patient. The waiting room is so full of people.  I wonder how many of them are for you.  I wonder when you will get your cup of tea.  When you will get to escape from the burdens that crowd your clinic rooms. I wonder what you are thinking as you face that ninth patient.  And I wonder if you really love what you do anymore.

So yes, I am sorry.  I’m sorry you are busy. That the Medical Profession isn’t what it used to be. I’m sorry to be one of the many who demand yet another slice of your mental gifts, your time, your attention.  I’m sorry that you have lost, or maybe never had, the ability to connect with the person sitting in that chair across from you.  Your intellect is a beautiful gift. A valuable gift. Your education and years of training have positioned you to make a living from that intellect.  And just as any person (making a living in a service role) needs to have interpersonal skills; so do you.  If a McDonald’s cashier can afford me a smile on minimum wage, I kind of think you should be able to manage one. I’m sorry to be the one to tell you that, because I don’t think anyone else ever has, or maybe, no one since Med School. I wish I had been strong enough to tell you when I was in your rooms.

Take a break, doctor. Make some changes to your schedule. Fix the system, if it is the system that traps you in such misery. Take a look at the person behind the records, and the person in your mirror.  Both are beautiful, complex, intricate human beings. Try a small smile, a minute’s reprieve from your analysis and timeframes.  And if what ails you is exhaustion, it might be good to remember that you are not Atlas.  You shouldn’t need to shoulder the planet alone. A holiday might make all the difference, you could take one.

Remember that the words you tell your patients are always significant to them. But the things you tell them with your body language speak louder than anything you say in words. And if it all carries on this way, you are not only hurting your patients with your brusque and bullish manner, you are denying yourself one of the greatest joys of medicine. That magical interplay between doctor and patient, when your skills and their need combine to create a job well done.

It’s great to have a masterful intellect. But, did you forget?

First, do no harm.

*general auto-immune screening won’t necessarily show the antibodies implicated in autonomic dysfunction.

Future doctor_pateient(1)

__________________________________________________________

It’s a long time since that appointment. I write about it now, because I spent four years believing, yet fighting, what I was told. That I was on a progressive trajectory, that I would decline towards the ultimate end, that I should do what I want to with my family while I still can.  That is a pretty harmful idea to live with. Or a helpful one, depending on your perspective.  But it is certainly painful.

I’ve since had a much, much better appointment with the same neuro. I don’t hold a grudge anymore about that first appointment, but I think it is illustrative of the difficulties faced by chronically ill patients being seen through the hospital outpatient system. And also of the difficulties facing our chronically stressed doctors. Our bodies may be sick, but their system is also sick. My subsequent search for more answers to all my questions, eventually led me to an immunologist.  My response to immuno-suppression indicates that my problem is indeed auto-immune, and absolutely able to be treated with immune modulation therapy.  I don’t expect my neurologist to have known about auto-immune autonomic antibodies.  But I did expect him to be compassionate and want to help.  Perhaps to do some research with that clever brain of his. Or phone a friend!

What I am saying is that I would like to see a future where doctors understand that they have a wonderful opportunity to limit the harm their patient’s endure, simply by being nice.  I believe that Hippocrates was not only talking about physical harm in his oath “First, do no harm”.  I’d like to see a future where kind doctors are recognised and rewarded for the extra efforts they make with their patient interactions.  And where hospital systems improve the working conditions of all their health workers, including doctors and specialists.  And maybe, one where girls like me; the apologising kind, find the strength to say their piece when they should.

Have you had an interaction with a specialist like the one I talk about, above?  I’d love to hear about it.
Do you think something can be done about the pressures facing doctors in our modern medical systems?