Diary of a Heart Patient – Part 1

It’s day 14 after my open heart surgery to repair my faulty mitral valve, and I thought I would share my story in the hopes of helping others who may be facing similar medical challenges.  As for me, I’m recovering remarkably well, pain essentially gone, walking regularly, keeping up my breathing exercises and enjoying life – even if I can’t drive yet.  So don’t worry about me!

My own heart issues started when I was born apparently, though I didn’t learn this until now.  I was born with this faulty mitral valve, even though it didn’t start to leak and work poorly for 66 years!  I don’t have ‘heart disease’; I’ve always been very active, and the arteries around my heart are fine – no need for by-pass surgery, and no danger of a heart attack for me!   But…

The first related incident was in 2007 when I suffered an aortic dissection, a tear in the inner lining of the aorta, with symptoms very like a heart attack, especially that excruciating chest pain.  The blood tears the lining and establishes an extra channel between the inner lining and the outer wall of the aorta – that’s what the pain comes from.

But although it feels like a heart attack, actually it’s sort of the opposite.  The heart is pumping too strongly, not too weakly.  If you treat it like a heart attack (trying to boost the heart), it would kill you.  Fortunately I had a doctor in emerg who took his time and diagnosed it properly, and I was successfully treated medically – that is, medicated to slow my heart rate and decrease my blood pressure for awhile.  That one was a long slow recovery!

Every year thereafter I’ve been going for annual check-ups and monitoring of my aorta (through a catscan) to be sure there were no further problems.  Along the way I learned I had a ‘heart murmur’, but it was at my check-up this spring I learned it was getting worse.  I go to a teaching hospital in London, so I’m seen by an Intern first, who then explains my case to the doctor.  That Intern listened to my heartbeat and greeted me with the words: “That’s the loudest heart murmur I’ve ever heard!!”

Things have moved fast since then.  I was referred to a cardiologist, who ordered an echocardiogram (essentially an ultrasound of the heart).  They could see the faulty mitral valve, which was not successfully pushing all the blood through my system with each heartbeat.  In fact I was told that less than 50% of the blood was getting through, and that means less than 50% of the oxygen was getting through – no wonder I was out of breath.

In fact being out of breath was the main symptom along the way.  I rarely got out of breath, but I did find walking uphill, or going on fast hikes, left me stopping for breath.  You’d think it was your lungs, but it’s not, it’s your heart.  In any case, it left me largely unable to participate in organized Bruce Trail hikes, which are too fast for me.  In response I invented ‘Slowpoke Walks’, which suit me just fine.

As the doctor explained it, you’re just getting 50% less oxygen to those big leg muscles especially, but also to the brain.  It made sense to me.  Ever since the first illness in 2007 I’ve felt I just wasn’t as mentally sharp as before.  As Chair of a big university department I used to multi-task constantly, and be assertive where needed to manage the place and the people effectively.  Today I can barely remember one project at a time, and simply have no desire to be assertive at all.  Life is to be enjoyed!

My wife has latched onto this as the excuse for all my foibles – ‘You’re obviously not getting enough oxygen to your brain!’  What am I ever going to do when it’s fixed?  I’ll have no excuse left!

We moved from the cardiologist to testing at St. Mary’s Hospital in Kitchener quickly, having both an angiogram and a transesophogeal echocardiogram (they put the sensor down your esophagus).  The former told me that my arteries are in great shape (a good thing), and the latter gave the surgeon a more detailed look at that faulty mitral valve so he could decide exactly what to do.  Surgery was scheduled two weeks later.

I have to say that I decided not to worry about the risk of surgery right from the start.  I have faith in our modern medical system, and I have some sort of spiritual faith myself.  I was convinced that it simply would not help me recover well to be worrying.  My dear wife on the other hand has done enough worrying for both of us!

We arrived at the hospital at 5.45 a.m. just two weeks ago, and it was less than an hour and a half until I was out cold, the first surgery on Monday morning (a good time slot).  I don’t think about exactly what they did, but I woke very groggily what seemed like two days later, with numerous tubes sticking out of my body and a brain that was seeing some pretty strange things, presumably because of the narcotics in the pain killers.  The vision I remembered was those large blue furry rabbits!  Today’s philosophy is to keep pain under control to help you recover, and I can honestly say that I have felt no serious pain throughout.  Now I’m down to just two Tylenol at night.

The week in hospital seems now like a brief visit to another world.  Two days in Cardiac ICU, with round-the-clock personal nursing, followed by 4+ days in the Cardiac Care Unit.  Sitting up in a chair for meals from day one.  Starting to walk with help on day 4, and walking on my own by day 5 and 6, along with a welcome shower.  There was a beautiful chapel at St. Mary’s, just around the corner from my room, so I made it a regular stop on my walks.  The worst discomfort was simply having to sleep lying flat on my back, which drove me crazy.

They give you a small pillow to hold across your chest when getting up or lying down, or when coughing, and it works like magic.  That means too of course that you need to learn to sit up, lie down, and rise from lying on the bed without using your arms – a lot more difficult that you’d think.

In spite of this, I think the week in Kitchener was harder on my wife than on me.  It’s two hours from home, so she stayed in a hotel which was a convenient location, but didn’t have a very comfortable bed!  And I’m sure she was bored stiff sometimes.  Luckily our daughter (and her husband and our grandson) came over to visit and keep her company a bit.  She was reassured by the surgeon that the operation went well, and they were able to repair the mitral valve, not replace it.  We both felt good about that.

The wires and tubes started coming out on day 4, and then suddenly on day 7, the Nurse Practitioner came in to say I could go home.  The last wires and staples came out, and we were out the door.  I had to sit in the back seat (away from airbags), while my wife drove home.  But I felt remarkably good!

In the week we’ve been home I’ve settled into a good routine I think.  It took all of one day to get my medications sorted out and organized, knowing what to take when.  We’ve also got used to visiting our little local hospital for blood tests, as I’m on blood thinners for several months, and that has to be regulated closely.  There’s two walks a day, arm and neck exercises, breathing exercises and two rest periods to be had. 

In between it’s not much more than reading and writing.  I’ve started on the first of some ‘Blurb’ books I want to do this winter, and started re-organizing the lectures for a Life Long Learning Series I’m giving on ‘The Landscape and History of Scotland’ this winter in Owen Sound.  And so far, I’m keeping up with my blog again – though little new photography.

So what can I say about this whole experience to date?  First, enormous thanks to all the medical personnel who helped along the way.  My surgeon is central of course, but I think I counted 4 other doctors and nearly 25 other medical staff along the way if you consider the pre-op testing as well as the week in hospital.  Not a single person did less than their best, and every single person was pleasant and caring.

Secondly, it’s harder on the caregiver than the patient.  As patient, I’m doing less than normal, and I’m supposed to rest.  I have a great excuse to just take it easy, once I’ve done my exercises.  My poor caregiver is having to do more than normal, and worrying to boot.  I’m surprised that the system doesn’t do more to support the caregivers.  That being said, I couldn’t get through this without the loving support of my wife.

Third, I’m recovering much faster than I expected.  Apart from being slowed down, somewhat restricted in outdoor activities, to allow the sternum to heal, and needing to rest, I’m doing fine after only two weeks.  Perhaps the fact I was basically healthy and active beforehand is helping.

Fourth, I’ve recognized the vital need to take charge of your own health.  We’ve dealt with five different primary doctors over this period, both specialists and my GP.  They all have their roles.  In the hospital there were nurses, other doctors, physiotherapists, and nurse practitioners.  Here at home there is the local hospital for blood work, and the local pharmacy for medications. 

Who puts this all together?  You do.  You need to proactively make sure that you see the doctors as needed, and follow instructions yourself.  You need to do the rehab activities, and organize your life to promote your own health.  I’ve learned that there are ‘good’ and ‘bad’ patients, but what’s the point of being a ‘bad’ patient if it’s your own health that loses out.  I think managing your own attitude is a big part of it.

Overall, I’d say this has been a remarkably more positive experience than I expected, and I’m recovering more quickly.  Here’s to the future!

I don’t know if there will ever be a ‘Part 2’ of this post; we’ll see how the coming months unfold.  In the meantime, thanks for all your support.