It's the 15 year anniversary of the beginning........

Had some problems getting into the 'new post' section, as it was using my Google account, and this was set up under an AOL account (yes, this blog is that old!).  Stopped posting on this when set up my Facebook page, but that also meant not delving deeply and, if you were following me in years past, at great length!  Hope that starting to post again will gain a few followers, as that gives me encouragement to dig into my muck & mire.  So, PLEASE, leave a comment to show someone has seen this! 

Feeling contemplative, as Feb 16 is the 15 year anniversary of the first echocardiogram, and therefore the first time I knew of my congenital heart disease (CHD).  If you know the history already then feel free to scroll down to 'So, now, 15 years after that fateful day.....' because this is a LONG one for those who are just joining my saga.

I'd gotten back from Egypt Jan 23, 2004, having been on steroids there as my allergies & asthma always worsened when traveling.  Stopped the steroids, but a couple days later needed to re-start with horrible bouts of coughing, difficulty breathing, feeling terrible, but working full time.  After a particularly bad episode in the bathroom in the doctor's lounge of the hospital I emerged to find G, the head doctor of the group, sitting in the lounge.  He looked at me and said 'That was you?  Upstairs, right now, you're seeing P'.  P is a pulmonologist there at the hospital,  had seen him as a patient a few times.  Got to his office, wheezing away, low pulse ox, clearly in distress.  He took one look at me and said 'You're out of work, at home, 2 weeks minimum'.  P prescribed huge daily doses of prednisone--80mg/day, mini-neb at home every 2 hours. I had to call every day, failure to do so meant getting admitted to the hospital.

Fortunately, the 36 rolls of film (not kidding!) from the trip were already developed, so did the absolute best scrapbook that I've ever done--it's a frickin' work of art.  It kept me entertained for hours, sitting at my dining room table and crafting away.  The cats didn't like the sound of the nebulizer, so I'd pull out the laser pointer and they quickly associated the horrible noise with play time.

Two weeks with high-dose steroids, P said to continue for another week before starting to taper  I wasn't wheezing, but was still out of breath and my heart rate was going up to 130 beats/minute just walking around at home.  My bosses were chomping at the bit for my return, so the first Monday P allowed it I was sent to Bryn Mawr's ER to admit a patient.  After finishing called my immediate supervisor, E, of course a cardiologist, and said 'I'm going to the office and getting an echo'.  He responded in a voice dripping with annoyance 'Why do you think you need an echo, Laurie?'  I responded in the same tone as his 'Because I'm short of breath and tachycardic, E.'  He paused and said 'Ok, that's a good reason.'  I followed up with my guess of having gotten a little viral or bacterial cardiomyopathy in Egypt while happily crawling around 5,000 yr old mastabas and in pyramids full of bat guano (which is just about the worst smell ever, and that comes from someone who's dealt with rotting flesh!).  It was the only explanation that made sense to me right then, and it was a solid thought process based on my history.  (Cardiomyopathy is a thickening of the heart muscle, making it less effective.  There are at least a multiple causes, including heart attacks, alcohol abuse, genetic and infectious.  CM is the reason people get transplants, as, regardless of the cause, if the muscle gets too enlarged it can't squeeze well.)

At the office ordered my own test,  told the echo tech my guess, then got undressed from the waist up and 'assumed the position', which is lying on your left side with the left arm under your head; in that position you can't seen the screen.   I'd been looking at echocardiograms, ultrasounds of the heart, for 10 years, and had gotten pretty good at interpreting them.  It's the same as ultrasounds looking at babies in utero, except you're looking at the heart valves & muscle as it contracts & relaxes.

K didn't say anything as she moved the probe and jelly around my chest.  As she finished I asked 'See any cardiomyopathy?', she replied 'No. Is E still here?'  I knew then there was something wrong, because she wouldn't care where he was if there wasn't a problem, but my main thought at that point was getting my bra and top back on before my boss came in, and that required getting all the jelly off.  She quickly left and told me later that she barely got out of the room before starting to cry, obviously she knows how to read echoes.  She went straight to E and said 'It's the worst mitral valve (MV) I've ever seen.'  He responded 'I don't believe you.'  K said it again, and he said 'That's impossible.  She's worked here 2 years, I'd know if she had MV disease.'  (Can you tell the ego?!)

Fortunately got dressed just in time, because regardless of what's wrong you don't want your boobs hanging out in front of your boss.  The screen was blank, there hadn't been any time for me to look at anything.  E came in, avoided looking at me, ,just said 'Well, let's see what we've got.'  Then he hit the play button.  In an instant it was clear how bad it was--it was that obvious, and it was terrible.  The first thought through my head was 'Life will never be the same again'.  I had no idea at that moment how accurate or rapidly that change would occur.

There was then a back & forth:
E: 'You never told me you had MVP.'
Me: I didn't know.
E: You had to know.
Me: I didn't know.
E: Laurie, this is really bad, you had to know.
Me: I can see that it's really bad, I never knew.
E: You HAD to know.
Me: I DIDN'T know.
E: YOU HAD TO KNOW ABOUT THIS. 
Me: I.    DIDN'T.     KNOW.   (The pauses were because I was yelling and had to breathe in between words.)

Brief medical lecture:  MVP, mitral valve prolapse, is the most common congenital heart condition.  While the experts vary, it is felt to be present in at least 5-10% of the population.  Women have it far more often, about 6:1, but it generally isn't a big deal.  It's usually found with just a stethoscope, having a distinctive extra 'click' in between the heart sounds.  Picture the MV like a set of French doors with two panels on each side which fold in half when the doors are open.  When both sides of the door are closed they meet in the middle and the door, or valve, is shut and no blood goes through.  But if one of the doors made up of two panels catches a bit while closing then the door doesn't close fully, or a millisecond more slowly, and that allows a little blood to shoot backward.  It's not a big deal for most people, mostly it's just one side (or door) of the MV, and a little regurgitation (back flow) isn't an issue.   Less commonly it can be both sides, meaning both leaflets are bowing backwards, which allows regurgitation of the blood.   It can worsen as you age, because, if it's severe enough, it will affect the valve leaflets and they will become enlarged due to the extra pull on them. For some reason, while women have MVP more commonly it is men whose valves deteriorate more severely. In > 95% of the time the diagnosis is made in childhood, when heart sounds are clearer because the chest wall is thinner: not as much muscle or fat between the heart and the stethescope.  Probably 75% of people in whom MVP is heard in childhood have it so mildly that by the time they are in their 20s it can't be heard anymore as their chest wall thickness increases with age.  While the leaflets can be damaged due to endocarditis, an infection which affects the tissue on the inside of the heart, including the heart valves, the vast majority of people were born with the abnormality.  (Yes, I used to lecture for PA programs and review courses before Board exams.)

My mitral valve was severely prolapsing on both sides, so the two 'doors' never closed completely.  Both leaflets were massively enlarged, literally about 5x the normal size. At that point with each beat of my heart about 40% of my blood was going backward, or regurgitating, into the left atrium and then backing up into the lungs, increasing the pressure on the blood vessels in the lungs.  The wheezing that had been diagnosed as asthma for years was actually heart failure, called 'cardiac asthma'.  And it had been exacerbated by the high-dose steroids, which had caused me to retain fluid, increasing the volume of my blood and making the strain on the valve leaflets even worse.  Remember the doppler effect from high school science (or Big Bang Theory!)?  If flow/sound is coming towards you it looks/sounds different than if it's going away from you.  The doppler in echoes uses colors: red means coming towards you, blue means going away from you, and depending on where you are looking those colors tell you the direction of blood flow through the valves.  My doppler was 'mosaic', a mixing of the colors because of turbulence (think big rock in the  middle of a fast stream), going backwards in two large jets.  That's why it only took a second for both E and myself to know what was wrong.  It was big & bad & ugly.

I was amazingly calm (maybe a little shock) utilizing a method perfected over the years of seeing horrible things as a paramedic.  I became very detached from my emotions, was purely clinical, so calm that E didn't think I completely understood the significance.  He kept replaying the pictures, clearly stunned, disbelieving.  About the 3rd time through one of the other cardiologists walked by, E called out to him to come look, giving him a warning look as he said 'This is LAURIE'S echo', meaning don't react.  But when L looked at the screen he burst out with 'Oh my God!'--which I never heard from him before or since, making it all the more dramatic and confirming the worst.
I looked at him and said wryly 'Not making me feel better.'

How did I reach 41 yrs old without anyone ever hearing any abnormality?  There is no answer.  I don't think E believed me until presented with my medical records from the doctor's office that treated me from 3 yrs old to 27 yrs old.  One time when sick, someone heard a murmer, which isn't unusual as an increased flow state with fever can give a temporary murmer.  But, over and over, for decades 'no murmers or gallops' was in virtually every note.  No one at Hahnemann had heard anything, and as students we all listened to each other.  Two sinus surgeries, both times having problems coming out of anesthesia, no one heard or suspected anything.  And I'd done the 'right' thing for years, not treating my asthma exacerbations myself (PAs can prescribe drugs) but going to pulmonologists, and they never heard anything.   I'd always been pudgy, never athletic, got out of breath easily.  I'd been tired for decades, but had supported myself while working my way through two degrees.  After graduating I worked 7 days a week to pay off debt and buy a house--who wouldn't be tired?  Sure, I had to pee a lot, so figured a small bladder.  Sure, there were ridges in my legs from socks, but my legs weren't skinny to begin with.  Sure, I'd get out of breath when crouching down for more than a few seconds, but I was out of shape.  And sure, my asthma had been getting worse.......

E & L sat me down, told me I'd need heart surgery, but that it was probably 10-15 yrs away.  The presumption was once I was off the steroids and the fluid retention was gone that the amount of regurgitation would diminish.

I did get better off the steroids, saw a specialist in the city who rolled his eyes at the drama and said 'maybe 15-20 years' before surgery was needed.  Then, inexplicably, it got worse again.  But we'll cover that when the anniversary comes up, or I'll tell you the date to read in the archives.

So, now, 15 years after that fateful day, it brings reflections on how much my life has changed. I went from being the rescuer to being the needy one.  Went from riding in on my shiny steed with red lights and sirens blaring to needing someone else do my housecleaning.   Went from the drama of restarting people's hearts to getting exhausted from doing paperwork.  Went from saving lives to feeling useless, and that's a struggle on a number of levels.  It's tough to go from decades of front line drama to having your week highlight being told you're doing a good job on a committee.  I'm not exactly changing the world the way it felt like 'before sick', and it's been an emotional struggle for the last several months.

But unexpectedly in the last couple weeks there have been multiple instances where I have made a difference to people in a more definitive  way.  Last week a PA at Bryn Mawr texted me, said one of the patient care techs had just found out at 39yo she has severe aortic valve disease and needs heart surgery.  She is, understandably, freaking out, we spoke for almost an hour, and she thanked me repeatedly, will keep me apprised as her surgery approaches in another couple weeks.  Today took my mother in for her monthly urine catheter change, while making her next appointments the clerk noticed Mom was now 89yo, and said 'well, you've got good genes!'  I laughed and said 'they aren't going to help me!', then mentioned the multiple heart surgeries.  Turns out the clerk has MVP, had an echo years ago but has been too anxious to get follow up.  I told her the statistics, the women vs men stuff.  She thanked me and said 'I'm much less anxious now!' and promised she'd call her doctor.  After that I went to the bank, got into a discussion with the manager who mentioned she was trying vegan to see if it made a difference to her asthma, and I told her she should try gluten free as it had made my asthma dramatically better.  We exchanged numbers, she texted me an hour later and said 'I can't believe how much stuff there is online about the connection of asthma and gluten; why didn't anyone tell me about this?'  It may make a world of difference to her, but even if it doesn't she feels empowered that she can do something to help herself.

Here's my favorite: a couple weeks ago I went to a fabulous drum making workshop, and during introductions a woman said her name and then burst into tears, saying she'd just found out there is something wrong with her heart and she's a wreck.  At the first opportunity I spoke with her.  She's having heart rhythm problems, I told her one of my bosses specializes in dysrhythmias, reassured her, explained some things, gave her names of doctors.  A week later, at a woman's spiritual group, I told them I was a cardiology PA, pointed out that it was heart awareness month and did a 2 minute spiel on women & heart disease.  About 8 of us went to dinner afterwards, including S, who then heard me talking about the drum workshop.  She asked me where and when, then told me that one of her closest friends was in that workshop, that the friend called her to say she had talked with a cardiology PA who made her feel so much better, and how touched she was that I'd talked with her & her husband, how much it meant to her that someone she didn't know cared and took the time to reassure her.

In one of my posts, think 2017 at the 10 yr anniversary of the third surgery in July, I  wrote about the struggle to survive, everything that was lost, the constant pain and disability which will be the rest of my life, and that I'd wanted something huge that would tell me 'This is why you lived!  This is what makes it all worthwhile!'  But that hadn't happened by that anniversary, and it hasn't happened since.  I wrote that there were, however, multiple small moments to relish, different ways to help and be a healer, that my expectations had had to change, that the ways I helped people would be different than before.  But sometimes it's hard for that to be enough.

There's a story vaguely remembered from many decades ago, thinking it might O Henry? A man asks God to reveal himself so that he can do something for God to show him how much he loves him.  Over the course of a day he runs across many people who need little things: a couple coins, a door held open, something moved, a scarf against a cold wind.  But God doesn't appear.  So the man stomps home, angry that God didn't appear to him.  He then has a vision/dream where he is shown all the people he did little kind acts to help, and God speaks to him saying 'I did reveal myself to you.  I was in all those people, you showed me your love by helping all of them.' 

While the concept of the Christian God does not work for me, I do believe in the Divine Essence of the Universe--interestingly that abbreviates to DiEU.  I believe in Spirits who are around us and in the Universe, something greater than we are, and that we are here to grow as souls.  In the last couple weeks the Universe has blessed me with multiple small opportunities to make a difference in people's lives.  I've knew what to say when, and said things to them that no one else could have said, helped in ways others couldn't because they didn't have my experiences.  Sometimes my just being there lets them know that they can successfully get through to the other side of the crisis.

On this anniversary and the life assessment that causes, I know deep in my soul that this is why I survived--for these moments, for these people, and the possibility of helping more people than I can ever know about.  These people's families and loved ones, the children they raise, their friends and co-workers, the people that they will encounter and help, made better because of me and my journey: the right person at the right time who said the right thing to help them cope.

So, on this 15 year anniversary, this is my epiphany: I used to be a big wave, crashing on the sand, making obvious dramatic changes.  Now I'm a breath of wind blowing across the surface of a still pond, creating ripples.  Small does not mean unimportant.  Tiny movements still have an effect.   Any change can expand out and make the world better. 

Before Sick I did things that gave immediate gratification, now the changes are subtle and nuanced, but they may have more lasting impact. Because there are lots of really good paramedics and PAs, but there's only one Laurie who can reassure you that if I got through 3 complicated heart surgeries that you can get through one, and come out on the other side.  Sometimes, just being present is enough.  Sometimes just a gentle breeze makes you feel better.  Sometimes ripples reach further than waves.

Thank you, Universe, for the message I so desperately needed to hear.  Oh, and keep them coming, please--even epiphanies need positive affirmations!