Sunday, November 16, 2014

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.


23 comments:

  1. Your general physical condition going into all of this is no doubt a huge factor in how you're recovering.

    My uncle had heart issues, very different from yours, but I recall times that the waiting for news could be immensely trying.

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  2. It's great to know that you are on the mend. Thanks for sharing your story--it's one that I haven't heard before.

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  3. Hi Furry.....
    Sadly I have not visited you....and knew nothing of your surgery!
    Glad to see you are home and back on the old computer....
    Take it easy....I am sure your wife is glad to have you back home....
    I will check back to see your progress....
    Cheers!
    Linda :o)

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  4. Sounds like you are well on the road to recovery! Looking forward to more wonderful posts ahead!

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  5. That was a very complicated event. So much had to go exactly right. I'm glad you're making a good strong recovery. Thanks for sharing this event. All the best for a full recovery.

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  6. A well written post that I'm sure will be helpful to others. Continue with your speedy recovery & keep us informed of your progress.

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  7. From one who has been where you are now -- in six months you'll have nothing but memories of the hospitalization, a scar that will fade and occasional twinges from some nerves that were damaged during the procedure and/or ribs that may have been cracked; but you'll feel great. If they had to put you on a heart/lung machine during the procedure you may have on-going memory issues since about 20% of us do -- it's a bit of a nuisance, but also comes in handy sometimes.

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  8. Your wonderful post could have been written by my husband in 2009 - when he had his mitral valve repair. He had no heart disease - the arteries were fine, he just needed the mitral valve repair which was damaged from birth. Everything you wrote is exactly as it happened for him, from riding in the back seat going home to making a flow chart of medications, practicing getting up and down with his pillow (it was heart shaped and the surgeon drew his mitral valve repair on the pillow) to a good and speedy recovery.

    I had to give him shots for a week - that was harder on me than on him - and he, of course, couldn't drive for two weeks. He healed so fast, because, like you, he had been extremely healthy and active before the surgery and was back to work in three weeks (light duty in his office). It is a splendid thing to see the wonders that can be accomplished by fabulous heart surgeons.

    May your healing continue at a healthy pace. Looking forward to the next part of your diary - I think I know how it will come out - since it has been 5 years since my husbands' surgery, when he was 64.

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  9. This is great writing, detailed, and thorough. I can see you have positive thinking, and this will have done so much for a quick recovery. When Hugh had his heart attack and 2 stents inserted, he was on "Clopridogrel"an anti-platelet agent, for 12months, and also on prednisone for PMR. Thin skin, and he bled so easily, we learnt to take, whenever away from home, even just a simple shopping trip, packets of sterile pads, crepe bandages, wet wipes, sterile swabs, and a typed list of medications, date of surgery and contact numbers, We got caught once, before I was aware of how much blood would pour out of the tiniest scratch. I ended up in a huge store, asking for tissues or anything, they gave me a roll of toilet paper, then we were off to buy wipes and more. And, like you, we were so grateful for the expertise of cardiac surgeons, staff, pharmacy help, and friends who rallied, as well as family who flew long distances or drove many km. Let your progress continue, and I look forward to Part 2, no doubt as you have snow and cold days. p.s. my best regards to Mrs F.G., yes, the carer has hard days, driving for weeks ( too fast, too slow, look out for that truck/van/caravan/bicycle) Park here, not there, here!!! Keep smiling Mrs FG, those of us who have been where you are, send lots of fond wishes for you too .Best to you both, Jean.

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  10. You do have a wonderful, positive outlook. And clearly some fine support. That all goes a very long way to doing well. May that always be so. Stay healthy!

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  11. Sending good thoughts for a speedy recovery and it sounds like you are improving by the day! Thank goodness for your caregiver...she must be a real doll!! Sounds like you had great care...what a blessing:)

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  12. Oh my! I'm glad you found the medical care that was right for you. Take care!

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  13. I am so glad to know you are on the mend and all is going well. I've just started following you and have enjoyed reading some of your other posts as well. You've got some great pictures on here! :-)

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  14. Thanks for doing this. I am so glad to hear that you are in basically good shape and I wish many more productive years for you. Thank goodness for our wonderful Canadian health care system. It has its detractors, especially in the United States where people have no comprehension about how it works, but it is in fact a robust success (not perfect, but nothing is) that ensures that everyone, regardless of age, income, health status, or anything else gets treated on an equal footing. I have friends in California (San Diego) who pay over $900 each per month for health care coverage and they each have a $4,000 deductible so effectively they pay for their own care anyway. I confess to not understanding Obama Care but it sure hasn't helped them. Keep posting on your great blog, Stew, so that we can all enjoy it. Tonight we'll probably have a glass of wine with dinner and I'll drink to your continued good health. Vive La Santé Canadienne!

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  15. Cheers! Glad you are doing well. I think it was good to put all this down, so that others can be aware of symptoms. Although I understand heart issues are very different for men than for women. In any case, glad you are recovering.

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  16. Happy to see you back and doing well. So many fellows (and a couple of gals from my circle of friends and family) in our age group have had this surgery in the past while.

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  17. Thank you so much for sharing this on your blog. Some people don't like to talk of such serious issues but I feel it's important to share the experience with others as we never know when we'll need the encouragement in a similar situation. I'm happy that you are healing well and gaining strength. Cudos to your wife as she cares for you. We women all know what it's like when our men get sick. :) (no offence) It is challenging sometimes and I'm sure she is a gem through all this. Take care and keep up the good work. Blessings. Pam

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    Replies
    1. It's a pretty dumb, sexist remark that you make, which, had it been made by a man, would be subject to a torrent of negativity. I nursed my wife through a debilitating illness until she died from it. I cooked her meals, washed her clothes, changed her bed linens, cleaned up her bodily wastes when she couldn't control them....and so on. So get off your high feminine horse.

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  18. An excellent account of your experience, and I am encouraged by your positive attitude and progress towards full recovery.

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  19. Thank you for sharing your story. I had no idea!! It sure sounds like you have a great attitude and I am so happy to hear you are doing so well.
    I will be praying for you.

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  20. Thanks for sharing this journey. Heart stuff is always scary. I'm glad you are doing so well.

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  21. I could have written this very same Blog in April of 2005 when I required triple heart bypass surgery. I felt at the time, exactly as you do now! Glad you are doing great!!! The Health Systems work, and they saved my life. "Here is to the future!"

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  22. Wat zijn Nootropics? Is het echt mogelijk om het normaal functioneren van cognitieve functies te ondersteunen?
    Lees meer over Nootropics en leer dat het om meer gaat dan een hype.

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