The Unpredictability of Life

Dearest Friends,
I know this blog is usually the home of Teeny Teas, Miniature Museum openings and other fun things, but today is about some serious stuff.  Lots of medical talk ahead, just consider yourself warned if this in some way upsets you.  Also, I'm currently in warrior-mode, so the voice you hear when you read this today will not be the same voice you hear when you read my other art-related posts.

Tuesday of last week, August 13th, was supposed to be the four-year anniversary of surviving my emergency open-heart surgery.  But instead of celebrating, I ended up back in the hospital.  What follows is a very open account of what happened to me this week.  I'll never stop talking about what it is like to have a heart problem because lots of people end up having them and never thinking they will.  That was me, as well, prior to December 2000.

So, I woke up on Tuesday about 4:30 a.m. not feeling well.  When I say that, I want everyone to know that if you ever feel in any way very, very differently than you ever have, you should seek medical assistance immediately.  You've probably lived in your body for a while, so you know how you feel all the time.  Very drastic changes to this are generally indications something bad is happening.  I woke up to my arms aching a lot, there being a pain (but not a big one) in my chest, along with some pressure, as well as a pain in between my shoulder blades and being slightly nauseous.  These were all different symptoms from previous heart problems, but I knew something was not right.

First of all, if you already know this, great, but I need everyone to understand something...

Please read that again, and make sure that you understand that most people who have heart attacks do not experience them like you have seen on TV or in movies.  The symptoms portrayed of heart attack symptoms tend to be closer to the experience of men and women's symptoms are almost never the same or as obviously heart-related.

My symptoms of the beginning of previous heart problems were pain in my jaw, pain and tingling in my hands, shortness of breath, pressure in my chest.

So, I let Victor know that we would probably have to go to the hospital.  We live only a couple of blocks away and I was able to walk downstairs and get myself dressed, so we drove there.  This has not always been the case for me and the ambulance has had to come and get me.  Frankly, the EMT staff are mostly super great, but they are not great at putting in the lines (and my veins have been poked at so much now that they are not very cooperative anymore), so it was just better (for me) to let the ER staff do it.  If you live more than a few blocks from the hospital, you should ALWAYS call 911 and have the ambulance bring you.  Also, you must NEVER drive yourself to the hospital if you suspect you are having a heart attack!  So, in the interest of safety, I'll tell you to do as I say, not as I do in this case and just always call 911!  They are able to do things to stabilize you and that could save your life! 

I got to the ER and you know something in your life is askew when you recognize the ER doctor and he recognizes you too!  But Dr. Matthew Kerr of Stephen's Memorial Hospital is a certifiable ROCK STAR.  When he talks to you, he looks right in your eyes.  He is so smart and so empathetic. He found my aneurysm 6 years ago and got me on a Life Flight helicopter to Maine Med in Portland.  He treated me twice in the ER in the month before I had to have my open-heart surgery 4 years ago (and again a few weeks after).  And he was there for me again on Tuesday morning.

When someone is having a heart attack, an enzyme is released into your blood stream called Troponin.  It indicates that damage (sometimes temporary, sometimes permanent) has occurred.  Generally, the doctors have to wait to see this appear before they can say you have had a heart attack.  But Dr. Kerr looked at my EKG and told me that I was currently having a heart attack and he needed to get me to a bigger hospital ASAP.  He gave me the choice to go to the hospital a bit closer or to go to Maine Medical Center in Portland, but it would require getting some clot-busting drugs before I left.  I chose to go to Portland because I have had everything done there in the past and I trust the cardiac team there.

For the first time since I started my heart adventure nearly 20 years ago, I was taken to Maine Med with the lights and siren going (and with the EMT driving like a race car driver!!)  Kudos to Kristina, Adam and Aaron for getting me there!!   On my way there, I started to feel much better because the blood thinners were clearing out the blockage in my heart.  Blood thinners are NO JOKE and I need everyone to know that under very close supervision, they can save your life.  Some of them are very good and some are, frankly, dangerous.  I almost added my specific thoughts about this, but decided to delete it.  I'll just say this: Don't let any self-serving doctor try to give you Eliquis.  If you want to hear more, you are welcome to contact me.  

When I got to the hospital, I was in line to receive a catheterization as soon as I arrived, depending upon how I was feeling once I got there.  So, they wheeled me directly to the cath lab and the doctor in charge of catheterizations, Dr. Cam Donaldson, met me in the hall outside the procedure room.  He asked me how I felt and luckily, I was able to tell him that I felt much better.  The blood thinners had clearly begun their work and had dissolved the clot in my heart enough to have made me feel so much better!  This was good news for me because it's always a relief to feel better after something like this, but also because it meant that Dr. Donaldson was able to postpone my cath until the next day.  That was safer from a bleeding perspective because it's always safer to wait until some of the blood thinners have had a chance to leave your system because they have to enter an artery in order to take a look inside your heart!!  That may sound very scary, but let's step back a minute and think about what a miracle this is!  When I tell you what they were able to see inside my heart, I hope you will me more amazed than mortified!

I spent the rest of the day and the night in the CICU, which means you will be in a very tiny room, filled with lots of equipment, a commode inside a small cupboard above a tiny sink and glass doors and curtains, which are open most of the time because they have to be able to see you all the time.  Cardiac leads are attached to you and they are looking at your heart activity all the time from the nurses station, which is only a few feet away.  At night, the lights in the nurses station are dimmed, yet they continue to work there all night.  If there is any change at all, they are able to get to you within seconds.  Luckily, it was a very quiet night for me.

Here's the one interesting (and frankly, pivotal) thing that happened while I was in CICU that day.  At some point, four or five doctors all crowded into my tiny ICU room to talk to me, all of them young and female.  I can't tell you how happy it made me to see all of these bright young ladies, all doing cardiology, making a difference in people's lives.  But one of them stepped up, introduced herself, and frankly, changed my world completely.  Dr. Jennifer Monti is so bright, so intuitive, so personable. She shook my hand and said, "Has anyone ever told you that you have very smooth skin?"  I said I wasn't sure (I was a bit confused by this being the first thing she asked me!)  She started talking about what had happened that morning that had ended up with me in the hospital and then she told me that she had her own theory about why I was there!  She asked me if I had ever heard of Ehlers-Danlos Syndrome.  I had, and more importantly, always wondered if I might have it, or another of the connective tissue disorders, such as Marfans!  She said that she had read all of the notes from my previous hospitalizations and she had concluded that I have EDS (Ehlers-Danlos) and that shaking my hand had been that final connection to her diagnosis!  Apparently, some of the people who have it, have "velvet-y skin"!  She could tell from the way my skin felt!  

Early the next day, they prepped me and came to get me and take me to the Cath Lab!  I was actually not very nervous about it because I have had catheterizations before and frankly, after my open-heart surgery 4 years ago, I was fairly certain this would not be nearly so serious!  

Dr. Donaldson is a super nice man, something I so admire, because many people I've met in cardiology are nice, but some seem to possess more ego than humanity and I don't like dealing with them.  Also, all of Dr. Donaldson's team were so nice and personable!  Everyone looks right in your eyes and is very kind.  I wish I could say all medical personnel was this on point in the area of human relations.  

If you haven't had one, I'll just tell you that having a cath done will not be the highlight of your day.  It's not the worst thing you will go through, but it won't be the nicest either.  Too many needles, and yes, there is a bit of pain when they put the line into your artery so they can look around.  But, for the most part, once that part is done, there is only minimal discomfort.  This time, I was lucky, because they used the newer procedure, where they go in through your wrist, as opposed to the inside of your upper leg.  Also, doing it this way requires much less bed rest, fewer restrictions when you get home.  

The cath lab is a big room, filled with lots of equipment,  four big computer screens on the wall, a small table, which is only as wide as you are!  They have to attach separate parts on the sides to rest your arms on!  The one they are only using to put meds into the lines for is close to your side, the one they plan to put the catheter in is on a small extension at a 45 degree angle to the table.  Of the four screens, one is hooked up to the heart monitor leads and shows your EKG in real time, one is connected to the tiny (truly!) camera they have inserted in your artery, and two are connected to large PET cameras that move over your chest while the procedure goes on.  Oh, and yes, you are awake for the whole thing, but sedated to keep you calm.  It is important for you to be awake so they can ask you questions about how you are feeling throughout the procedure.

Dr. Donaldson thought that my problem was the veins that had been grafted during my open-heart surgery four years ago (those veins came from my left leg in what is called Saphenous Vein Graft surgery).  As it turned out, those veins were all still in good shape!  That was the first bit of good news!  And, because they were in good shape and didn't have any significant narrowing, there was no need for an angioplasty or stents!  More good news!  He did see evidence of there having been a blood clot there, that had been mostly dissolved by the blood thinners and so he knew for certain that this was what caused my heart attack.  They removed the line from my wrist, applied pressure, affixed a small device which applies pressure to the area to stop the bleeding and wheeled me back to my room, where I sat up, ordered breakfast and ate it all!  

I want everyone to know that I think being a doctor or a nurse of any kind is a super special, super difficult job and I think that anyone who is good at their job and good with the people they are working with is pretty amazing.  So, I like being as kind and as polite and as non-demanding as I can possibly be while I am there.  That's hard work because I'm generally tired, uncomfortable, sometimes in pain, somewhat scared, just wishing I was home.  But, sometimes my need to be the best advocate for myself puts me in the position of being a bit of a pain in the butt.  Here's a good example:  The night before, an alarm kept going off on two drips that I had.  Over and over and over. Some ninny of a nurse kept coming in and telling me that my arm was bent, but it was not!  So, finally, I unplugged the pump (it operates on rechargeable batteries), wheeled it down the hall, beeping and carrying on, and TOOK IT TO THE NURSES STATION.  Trust me, I had their attention then.  The nurse who was sitting there snapped the lines and took some air bubbles out and it didn't beep again all night.  She didn't mind and understood that you can't sleep with that beeping next to your head!

Dr. Monti and more of her team came into my room the next morning and she was able to tell me why I had my sudden heart attack.  Apparently, some forms of EDS (there are 13 variants of it) involve collagen which is faulty.  That faulty collagen can bond with the platelets in your blood and cause random blood clots to form.  So, she has put me back on Plavix (I was on it in 2010, following the placement of a stent in my heart and I tolerated it well) and she is confident that this will work to prevent anymore unpleasant surprises like what happened last Tuesday. (Oh, and I told her about the drip alarm from the night before and she told me that she liked the way I advocate for myself!)

No one will advocate for yourself like you.  Do yourself a favor and keep the communication going between yourself and all medical personnel.  The good ones don't mind and most of them are grateful for communicative and helpful patients who want to be their partners.  Dr. Monti told me that I tell my story better than what she can get from the notes!  It's a lot to remember if you don't have a medical background, but sometimes it helps them and what helps them ultimately helps you.

If you have read this far, thank you!  I know it is a lot.  But before I go, please let me remind you of this again:  If you are a woman and you have a heart attack, your symptoms can be very different from a man's.  This information could save your life.

Be safe and healthy.  Everyone has something unique and important to contribute to life (well, almost everyone, don't get me started!).  Listen to your body.  Lots of times, if it is in trouble, it will try to let you know.  Treasure those doctors who are willing to listen to you and learn from you.  Don't be bullied by those who don't want you to know anything about their dumb "doctor stuff".  Egos should be checked at the door when doctors enter patients' rooms!  Good doctors know this.  Humanity is not weakness, but strength.

And mostly, thank you again for reading this!

(And, as per usual, Blogger may or may not allow you to leave a comment!  If you can't, please feel free to leave me a comment on either Twitter or Instagram (links to the right in the side bar), indicate that you want this to be a comment on the blog and I will be pleased and grateful to post them for you.  Apparently, I am still able to post comments to myself, which is so endlessly helpful, isn't it??)