Steven's Journal

So Thursday I find out that my aneurysm is stable. Cardiologist schedules an echo to check on the BAV.
Friday the surgeon calls to schedule a quick chat but that's fine, we kinda figure that he's aligned with the cardiologist.
Great, Happy Happy, Smile Smile.

At noon I notice blood in my urine. Then clots.

Long and short of it I spent some time in the hospital. Another CT and ultrasounds and machines that go "PING!" and, well, because I'm not in pain, don't have a fever, am not nauseous, and they can't see anything on the CT, I'm queued up for a clinic visit and a scope next week.

Now it's likely just a bleed in the bladder but still. Can't I have ONE flipping day of feeling happy and well?

Sheesh.

Had a virtual cardiologist visit today and the news is that due to aggressive blood pressure and pulse medications and my losing a cr4p-ton of weight and despite COVID and losing work I have a lot less stress, so we have halted the growth of the aortic aneurysm. The dosages have been drastically reduced to account for all this and the fact that my BP is averaging 93 over 68 this last week.

He wants an echo just to see if there's been any change on the regurgitation which was mild-moderate last time and unchanged.

His take though is that it's still not a question of "if" but one of "when" to have the surgery.

So you're stuck with me for a while yet.

It is Canadian Thanksgiving! What with calls by public health officials to keep it simple and our boys living on the "wet" coast it was just us two. Some Canadians do the big meal on Sunday and we did this year, although as cook I kept it simple. Pumpkin pie... from scratch though!

Lots to be thankful for. We are on the right side of the turf and we have each other.

I am also thankful for this site and community.

Went for the CT cardiogram of the heart and aneurysm today. The experience was surreal. Oh, not the CT, I've had those a-plenty, it was the hospital itself.

Three security guards at the door with sanitizing stations, then the questionnaire station and temperature station and a pass station and a porter to take me to my destination.

Foothills Hospital is vast, about a dozen buildings all interconnected. "A maze of twisty passages, all alike". Usually it is bustling like downtown, but the corridors were more like you'd expect overnight, some people, all keeping their distance.

This hospital has had 7 wards affected in the last month by Covid, and 10 deaths, most of which were in the Cardiac wards. It was a bit off-putting for someone who has basically kept home for the last 6 months.

But I felt strangely safer than I have going downtown to visit my dentist. People there are taking precautions very seriously.

At any rate... no news for a few days. The tech said. "Yup, Bi-cuspid valve." I didn't figure it had cured overnight.

How have your hospital visits been? Noticed the changes?

My in person follow-up with my cardiologist after the CT scan next week has been turned into a Zoom event. He's part of a practice that is in lockdown, or the building is in lockdown. He's tested clear. He does practice out of the hospital that is experiencing "issues" in Calgary, and his partners do too. *sigh*

More concerned about the folks in the two of the 7 affected wards that are nearer to my heart (no pun intended), the cardiac general ward and the cardiac surgery ward including the ICU.

It's the start of the annual test-fest for me, blood work, physical, CT scan of the heart and aneurysm, stress test, meet with the cardiologist and surgeon, you all know the drill.

Since the end of February I've been in lock-down. A hermit. The love of my life is my face to the world and I don't venture out except for the occasional drive to the mountains for a picnic in the car. We call them "nowheres" because that's where we go... nowhere in particular.

At any rate I knew that I wanted a bit of a change in lifestyle since my being laid off. I took over the cooking duties and that has helped with a bit of stress management. Nothing like chopping veggies to relieve stress.

I knew that I was dropping weight because clothes became increasingly looser, but I wasn't trying to lose weight, just live healthier. I'd walk on the dreadmill, do some gardening, eat healthy, and the weight loss was a happy by-product.

Oh... and we don't have a scale. I couldn't get obsessed over a number.

So when I saw my doctor yesterday for the physical she asked me how much I thought I weighed. I didn't know. When I saw the number I said, to use a technical / medical term, "I've lost a sh*t ton of weight". Now I wasn't morbidly obese, but let's put it this way, I now look thinner than my picture and that was when I was "fighting weight".

What all this means is that my beta blockers and other BP meds have to be adjusted PDQ. I've been having low blood pressure spells again and they are disconcerting.

She says that the murmur from the bi-cuspid valve is loud and clear but that it doesn't seem to have worsened - I kinda could have told her that based on my ability to exert myself.

We'll see what the CT scan brings.

Hang in there folks!

Well, according to almost every company advertising these days, since I last posted the world has changed. Has it?

The BP is higher but still low-ish (100 over 68). I've lost weight, and look like the picture. I'm feeling pretty good actually but I'm pacing the cage. I'm being a good boy. My Primary Care doc and Cardiologist have both told me to stay at home and practice social distancing. Apart from a drive in the country every other week with a picnic (self-contained within the car) I have not set foot outside the garden. The dreadmill and I are friends of sorts now.

I'm waiting on the benchmark CT scan to see if the aneurysm has grown. It's grown by about a mil each year so this one will likely be no different.

What gets me through is actually reading your updates. I am firmly convinced that we tackle what's been dealt to us one step at a time. We keep moving. That's what you're teaching me.

Some wag said that you can come through this pandemonium as a hunk, a lunk or a drunk. While I've had an adult beverage or three now and then I'm no drunk. I'm never going to be a hunk, and I'm no lunk. Maybe... I'm a monk.

Hang in there folks.

I'm not saying it's aliens but...

No, it's not aliens. It's the drugs. That and the fact that I was a distance runner and handle exercise a bit differently. That AND the fact that I've been "retired" now for a half a year and the stresses of not strangling the living daylights out of people who so richly deserve it have dissipated.

In other words, it ain't the ticker, or not quite all the ticker. Cardiologist has reduce BP meds and the beta blockers.

Understatement of the day "I think 51/38 is a tad low."

Oh, and I am a touchy feely guy. I never actually would have strangled anyone. Much.

Thanks all.

Primary Care physician saw me. Thinks BP is too low (not including the 51/38 I pulled on Friday. Going for an echo, she's dropping my beta blockers in the meantime and testing for other things to rule them out.

Quick question.

I've had a stable bi-cuspid aortic valve. Cardiologist said that when and if it went downhill I would know it pretty quick.

Been having bouts of extremely low blood pressure mid-day and lethargy. I have called him. But in the interim, for those of you with stenosis, did you have similar episodes?

I have had double vision since the first few days of September. Long story, I thought it was related to muscular strain headaches (backpacking). Nope.

Latest is that it might be something called Myasthenia Gravis.

One of the set of drugs I am supposed to avoid? Beta Blockers.

What drugs am I on to lower heart rate due to the aneurysm? Beta Blockers.

The story continues. Film at 11:00

Unlurking for a bit to update where I'm at.

The day after Thanksgiving, a bit auspicious perhaps. One thing I'm grateful for is that a month after turning 61 I had a doctor seriously call me "young". That doesn't happen much.

CT scan and echo show that the bi-cuspid aortic valve is stable. No sign of stenosis. No change really since I was first diagnosed over a decade ago. That's good.

The aneurysm is at 50 mm (5 cm) at the widest. Surgeon says "I measured it at 5.1 but I'm not going to fight the radiologist". That is relatively stable. May have moved by .1 of a cm over the year. Surgeon said that if he was a betting man we'll be having a talk about surgery by the time I hit 70.

And so it's life as usual or as usual as possible under the circumstances. If I was / am asymptomatic for the valve and aneurysm, my lifestyle has changed with the drugs I am on. Slower, for sure.

That said, we had a wonderful trip to the UK and tramped all over the place, 10-12 miles a day usually. The day pack did something to me though. I may have impinged nerves because I have double vision. CT scans for that (yes, I collect them) indicate that my carotid is aligned a bit oddly, a variant of the normal. Hey, I'm collecting variances and congenital defects. So we're watching that too and I'm wandering around with an eye patch.

I am reminded of a verse from a song by a Canadian Folkie: "Being a pirate is all fun and games 'til somebody loses an eye..."

I have also found myself without a job. The wife, the family, friends, frenemies, evereyone seems to be delighted that I have retired. I'm not sure that I am ready to call it a day on the working front, but I will admit to enjoying a bit more sleep.

So that's the news from here. I'm off to enjoy more pumpkin pie.

Visit to the cardiologist:

Valve is still stable. No surprise.
Ascending aorta is the concern. No surprise.
That said, beta blockers are doing their job, and there is no indication that we have to move on surgery just yet. Scheduled for a CT in the summer and being actively monitored otherwise.

And that means... we're clear to travel and have a vacation. That's why I'm doing a (sedate) happy dance today.

Cardiologist does think that surgery is likely in the next couple of years. Years? Oh well. We'll burn that bridge when we come to it. In the meantime where are those travel brochures?

Last night after supper (7 to be precise), the missus and I were lingering over the dishes and conversation. The phone rang and it was our GP. She's also in charge of doctor's education for our health district, and I know she puts in long hours. I was surprised.

She had a copy of my echo and wanted to tell me about the results. She had called the cardiologist (as I had) and had discovered that he was on vacation.

Valve is (as always) stable with no stenosis and mild regurgitation. Echos don't give you as accurate a measurement of the dilation of the ascending aorta, but they seemed consistent with the last measures, so no new growth.

She just wanted me to know because we're off on vacation ourselves and she didn't want me to worry over much.

What a peach. We love her to bits. It's nice to know that you have the right people in your corner.

Last night after supper (7 to be precise), the missus and I were lingering over the dishes and conversation. The phone rang and it was our GP. She's also in charge of doctor's education for our health district, and I know she puts in long hours. I was surprised.

She had a copy of my echo and wanted to tell me about the results. She had called the cardiologist (as I had) and had discovered that he was on vacation.

Valve is (as always) stable with no stenosis and mild regurgitation. Echos don't give you as accurate a measurement of the dilation of the ascending aorta, but they seemed consistent with the last measures, so no new growth.

She just wanted me to know because we're off on vacation ourselves and she didn't want me to worry over much.

What a peach. We love her to bits. It's nice to know that you have the right people in your corner.

Had my echo today. I must be getting used to this, I had the tech laughing at me. I heard the swish of the blood flow and said "I don't hear any regurgitation." She replied "That's good, because that's your Tricuspid we're listening to."

"Oh."

Even though the doc was in the clinic I didn't have time to stick around. Will see him soon at any rate.

Poking my head in with a brief update.

Was AWOL for a while because I couldn't log in and my password reset emails from the site were going to the junk folders. Blushing because I'm an IT professional. Gah!

Still on observation, on beta blockers that are slowing me d o w n . Fringe benefit is that I haven't had a migraine in a while.

Aortic aneurysm is at 5.1 cm. Scheduled for another echo in a week just to monitor, and have had a stress test. Goal is to get another baseline measurement with a CT scan in the spring. If there's been a change then I'm in the batter's cage for surgery.

Bi-Cuspid valve is still stable AFAIK. Surgeon thinks he can repair in place.

Well now I know what "active monitoring" is. Gee, they're leaning on the active part. Met with my cardiologist today and he's changed meds. Because I was active and a runner my heart rate was already rather low, but the BP wasn't moving so now we're trying other meds. Got a stress test planned as well. Will be seeing this MD quite regularly in between echo sessions and another CT in a few months.

Cardiologist also put some restrictions on my activity levels again, and will only lift them after the stress test. He also made my day. Called me "young". Ha.

The meeting went very well and I was impressed both by the professionalism and the warmth with which we were received and consulted.

The upshot is that I am now joining the ranks of the crew who will sit around here watching and waiting until a surgery date is assigned.

The recommendation that we're going to go with is to do some aggressive monitoring for the next bit. As I am mostly asymptomatic and the CT scan reveals an even dilation with no adverse impact on the valve and the fact that the valve is still stable the team believes that the risks of surgery at the moment outweigh the benefits. But that might change - hence the monitoring.

So. Off to the the cardiologist. Thanks all for the words of support.

Okay, here's my list of questions, distilled from about 3x this:

• Tell him who I am and why I want to be heard/understood - active not willing to settle for being an invalid.
• Summary of current state (CT Scan and tests). What do they mean?
• Am I having symptoms or not? (Describe)
• What are next steps and why
o Risks and benefits
o Likely outcomes and Dr’s outcomes and success rates?
o Timing – is there an optimal time? How soon?
• Does my health history raise any special concerns about complications?
• Heart valve
o Part of procedure? If so, repair or replace?
o If repair is possible how long does it last?
o Preference for no blood thinners – so no mech valve. Is this okay? Why not?
• Complications
o What are typical adverse effects, complications or setbacks
• How long a surgery? Steps involved?
• How long in hospital?
• Stairs at home – an issue?
• How long for return to work?
• How to prepare mentally and physically?
• What to do and not to do in terms of activity.
- As a McGill alum, what does he think of the Canadiens this year?

Surgical team appointment has been rescheduled (advanced) to tomorrow based on the results of the CT scan (I think). Getting a whole list of questions together. Got the traditional ones:

"What is your recommendation and why?"
"What are your outcomes?"
"Why now?"

along with me-specific ones:

"Look, I was/am asymptomatic, so can you tell me that I will not deteriorate or feel worse after this longer term?"

And then I'm going off script:

"Will Tiger win another couple, do you think?"
"Ginger or Mary-Anne?"

Any suggestions?

Hard to be stressed out when hanging with this crew!

Quick question. On vacation (amazing) and cardiologist calls to say he wants me to start Bisoprolol right away. Anyone taking this?

The biopsy results came in this morning. My Nephrologist's assistant called to make an appointment and we went into a bit of a dance. The doc is on vacation until the end of August, and we will be gone until the middle of September. I gave her my phone number and we agreed that he'd call me if there was anything grave.

Then I realized that my primary care physician, a doctor that my family loves and cherishes, would also have my results. Duh.

A quick call to her assistant and "Of course, Steven, I'll have it on her desk in a jiff. She'll call you if there's any need."

Five minutes later the phone rings and I hear my doc's cheery voice... "Steven, go on vacation, you don't have cancer."

They don't know what it is - it might have been a stone I didn't feel (Yeah right!), and I have more tests to rule out obscure tropical diseases, but still...

Phew.

I'm back at work today (yesterday being a holiday in Alberta), but I have very little stamina. This after only a week in hospital and nothing at all to do with the heart.

One of those things that makes me go "hmmm". If this is the case with comparatively minor surgery, how much more important is it to get back on one's feet and get moving after heart surgery?

I'm home, waiting on the biopsy results, although the Nephrologist ("He who never visits the ward") dropped by and told me that he was going on vacation and NOT TO WORRY. (Yeah right).

The missus and I had real food. I told her a bit of what I'm going to write now and she urged me to write it. I don't pretend to have a universal truth to share, just MY truth from all of this.

I think what I've gleaned will help me as I prepare for surgery on the heart, or cancer or whatever comes next.

1) One step at a time.
I have to have an idea of what the plan is, but you don't eat an elephant all at once. What's the first bite? I think it also makes sense to look at the next step and have contingencies as well.
At one point this week I felt the frustration building and instead of letting it get to me I rolled my eyes and let out a laugh and a hearty "PLOT TWIST!"

2) I am and have to be my own advocate.
There was a mistake made, a miscommunication, that cost me a day or more in the hospital and had an anesthetist apologizing to me for doing her job: She cancelled my surgery until she could understand the risks of general anesthesia to my valve.

Now I had thought that I communicated that fact appropriately (I did) to the surgical resident, but it didn't get passed. My urologist knew, but surgical team didn't. I hugged the anesthetist and told her that I respected her professional integrity. I gritted my teeth and sighed, but firmed my resolve to ensure that I communicated everything that I thought germane.

3) I am not a piece of flesh or machinery to be worked on.
I made a point of finding out people's names, of asking roles, of making small talk. I am human. For my part I want to know who is involved and feel some sort of relationship to one or more of the professionals. I would hope as well that I would be less "That stent guy" and more of "the guy who took an interest in why I'd chosen this field..."

My stay on the ward was actually at times... fun. Gurnied here and there I would call out "ROAD TRIP" to the ward clerks, or ask if they wanted me to stop for coffee on my return.

My white board had a section for personal goals. I think you're supposed to put things like "Be mobile." I had "Smuggle Lagavulin in to the unit."

No, I wasn't being a clown. I was serious too. My favourite nurse is someone who is 17 weeks pregnant and she spent some time with me talking about my fears and revealed that she had fears about being a good parent. I told her that from my experience the ones who worry about it almost never have to worry. We chatted for a while and she would stop by at the end of her shift to just chat. We're human.

4) My dad always says 9 out of 10 of the things we worry about don't happen.
I would always counter that I was worried about that 10th. But I believe that he's right. I went so totally braced for a bad experience in the biopsy today ... and it was painless.

As I said, I am not going to borrow worries.

Thanks all for your support this last week. Now back to something we're all familiar with - waiting.

Oh, my thoracic surgical team sent me a nice little note both wishing a speedy recovery and a great vacation, and I haven't even met them yet.

Just back from a biopsy of the kidney. Did you get the tag of the truck that shmooked me?

Thanks all for your kind words of support. They've been bandying the "c" word about. I guess now I will just have to wait.

Urologist is a gruff can-do but matter of fact guy. He will work with my heart surgeon to craft a response plan.

In the meantime, where's my single malt?

Surgery went fine under general anesthesia. They didn't finds anything, but left a stent in and the obvious bleeding has stopped.

Just as I was about to head out the back door, the head of Urology has ordered a needle biopsy. He wants to be sure.

Ah, well.

I get to contemplate what heart surgery will be like, and it also has me thinking about how tough this all is for our loved ones and partners.

Exploratory surgery was cancelled in the OR by my anesthetist. She said she wasn't comfortable with general anesthesia given my aneurysm and the fact that the surgical suite was not properly set up for thoracic surgery. She wants an echo done and will consult with my thoracic surgeon on best course. Another night... I would murder for a good curry.

Likely a spinal block.

When did I become "That nice old gentleman?". I was aiming for cantankerous. Don't mind me, it's 4:30 and I'm waiting for the meds to kick in.

Woke up in agony at 2:30. Felt like a stone but the CT showed nothing significant. Still bleeding.

After a cystoscopy session it seems that I have clots in my ureter. Diagnostic surgery tomorrow.

Cancer is not likely but is a possibility. Doc knows about the aneurysm and surgery will be fine. If it is cancer then we have a problem or two.

Not going to borrow worries.

Great Friday and Saturday camping and hiking in Banff and Kootenay National Parks. As the missus and I readied for bed yesterday I passed copious amounts of blood.

We decided that since I was in no pain we would wait until this morning. The situation hadn't changed by Dawn, so e returned to Calgary, I had a shower and N cooked us up a campfire breakfast in our kitchen.

The joys of single payer health care... I was triaged within 5 minutes, admitted within 10 and in an emergency ward bed within 12. Blood work, ultrasound, urine test... All came out clear, so I waited for a CT scan and was told that there was nothing obviously wrong. I have a cytoscopy appointment for tomorrow.

What fun. The consolation is memories of the new growth forest we walked through and the gorgeous scenery revealed after a forest fire.

One foot in front of another.

The fun thing about being asymptomatic is that it plays with your mind. I have heeded warnings and cut out the running. Hello added weight! I still hike and we're planning on a vacation in Newfoundland and Cape Breton for late August and September.

Those plans were cast in doubt what with the consultation and imaging and stuff, but we've managed the imaging appointments and surgeons appointments to allow us to go, but with the admonition that I'm not to lift anything heavy. So... I travel very light!

Surgeon consult is set. We'll go on from there.

Well that was fast. I just got a call from my surgeon based upon the referral. Calgary's Foothills Hospital has the Libin Institute of Cardiology and is also the teaching hospital for the U of C. My surgeon's research coordinator called to get acquainted and to help allay some fears and concerns. We're waiting on an imaging appointment, but they're going to put some pressure on to have it happen soon. I looked up the credentials of my surgeon and am really quite impressed. It helps that he's a graduate of one of my alma maters (HA!)

A few years ago now I had an incident while on a winter back-country expedition. A small group of us, including one of my sons cross-country skied several miles across a Rocky Mountain lake with the idea of setting up camp on the other side. Unfortunately we hit a snag, a few of them actually and the climb up from the lake through snags took me the better part of an hour pushing through waist deep snow. I arrived at the top unable to breathe. Another parent who is a nurse said that she thought I had cardiac asthma. Luckily she had a puffer and I stabilized.

A trip to the doctor on the way home confirmed that I had asthma, and tests revealed that that "murmur" I kept hearing about when I had physicals was actually a bi-cuspid aortic valve. I also discovered that my ascending aorta was a bit enlarged.

I signed up here, told my story, fully expecting that I'd be operated on based upon what my cardiologist was indicating at the time.

Well, that never happened. Regurgitation was mild, no signs of stenosis. I was fit but told that my days of marathons were behind me. (Good thing too: I kept winding up in the med tent with ischemic events and no pulse after them.)

Every year an echo, every year more poking and prodding. Every year another notch on the "Hey, nothing's happening" belt.

Three weeks ago I had my annual. You get to know how these things go. The tech was efficient, but she kept returning to this one spot on my chest and the exam took far longer.

"I'm just going to step out for a bit and show this to the doctor..." Uh oh.

When the doc came in I told him that I knew about my condition and that I'd appreciate some information. They don't usually tell you anything, they leave that up to your regular doc or cardiologist.

"Valve's fine", he said. "It's the aorta."

Oh.

"You run? Stop that." Terse fella he was. I run (ran) about 10km a day. Running relieves stress and calms me. I am getting aches and pains from running on pavement but I give the treadmill a good workout. That's stopped.

At any rate he was emphatic and said "I may just be a pictures guy, but you're going to need to be operated on soon." He said he'd inform my cardiologist and my regular doc.

At any rate, I'm at 4.9 cm at the root and up at the arch it is at least 5. I'm up for some more imaging (CT / MRI) to get a better idea of the measurements.

That's an increase of 3 mm over the last pics, not an enormous change but things are moving.

And I'm being lined up with a surgeon for a consult. Canadian guidelines are 5 cm instead of the 5.5 in the US. We're a cautious lot us Canadians.

Lots to think on, lots to ponder.

They might not want to replace the valve, it being still relatively stable, and I don't want unnecessary surgery, but I also don't want this to become a habit.

I don't like the thought of a mechanical valve because I have no great desire to take blood thinners for the rest of my life. I lead a fairly active life and I bruise easy.

I turn 60 in September. One of my employees just lost his Dad - he was my age. His grandfather is the same age as my Dad, 82, and wouldn't you know it, he had an aortic valve replacement and the ascending aorta to boot. He's doing well. That's encouraging.

What's also encouraging are the stories I come here to read. Been lurking for years. Now I'm back out in the open.

I won't say that I'm not scared. I'm terrified actually. But to paraphrase Boswell: "When a man knows that he's about to die of an aortic dissection it focuses the mind wonderfully." I'll take the surgery.

So I'll be around asking questions and finding some answers.

I haven't told family yet. There's no need in worrying people unnecessarily until I have answers and a direction charted.