I need a new what?

An informational page by Warren Montgomery

Please note -- the information here is not intended as medical advice.  You should always follow the instructions from trained medical professionals who know your case.

As I write this, I am a 67 year old man recovering from open heart surgery to replace my Aortic Valve.  I lived most of that time getting regular medical checkups with no indication I had a developing problem, and only the broad indicators for heart disease -- high blood pressure and high cholesterol, both of which I controlled with diet, exercise, and medication for half my life.  Then, suddenly, shortly after my 67th birthday a new doctor observed something my previous doctors hadn't, and began a medical journey I expect others make as well, and may want to know what to expect.

Anyone ever tell you you have a heart murmur? 

My previous primary care doctor retired around the time I turned 67, and not long before I was due for a checkup, so after some research I signed up to see a new one at the same group practice.  He was younger and took more time, and found everything much the same until that final check of my heart with a stethiscope.  He looked a bit pensive and asked me if anyone ever told me I had a heart murmur.  Not definitively --  my previous doctor said he might have heard something once years ago, but that it wasn't clear, and not enough to follow up on.  Back in the present he asked if I had ever had various heart tests.  Well, I had a lot of EKGs in the past 10 years, all in connection with two inpatient and two outpatient surgeries, and nobody ever told me there was anything unusual.  "I think we should get you an echocardiogram -- it's a good way to find out what's going on and fast and non-invasive."  Great, my two favorite words to hear about medical tests. 

The echo-cardiogram was basically an ultrasound of the heart.  That's an easy one, you basically just sit there while they rub goop on you, run over your chest with the ultra sound emitter and sensor, and note numbers and take images off the monitor.  The technician didn't say much (they never do), but one benefit of my doctor's practice being absorbed into a major medical system is that everything goes on line and the patient can look at the results.  That took a couple of days.  A lot of figures about pressure and volume, and some disquieting notes about calcification, with an overall diagnosis of "Severe Aortic Stenosis".

That was a shock.  I'm not an inactive person.  I walk 5 miles a day on the golf course most days in the summer and use a cross country ski machine in the winter, and also do real cross country skiing and hike mountain trails.  Okay, I had noticed in recent years that I had to reduce the "drag" on the ski machine and couldn't go as fast or long as before, but I could still walk over 10 miles in a day and never felt a chest pain.  When my doctor saw it he translated the results as I had and referred me to a Cardiologist.  Meanwhile I was going right on with my normal activities, including 5 days of walking a mountain goat golf course in Colorado springs to be a scorer for the US Senior Open.

I saw one of the cardiologists after that, who went through the results in detail with me and said I would need a new Aortic Valve.  I knew that, and realized this was likely major surgery, but had heard there was a less invasive option available.  He told me that was true, but it was new, without enough data to reliably project longevity, and that as a result they used it in patients who were too old or too frail to tolerate the open heart version.  He also said they couldn't do either procedure at our local hospital but recommended two others in their system, and said I could take some time to think about it, so we set up an appointment in a month after another tournament and a trip to Alaska.

In a month, after some reading I was convinced I had to get this done.  The cardiologist wanted to set up an Angiogram, which would bar me from travel and golf for 2 weeks, so we put it right after labor day, the last tournament on my schedule.

On to planning a repair

I had heard about Angiograms but never realized exactly what they did.  They run tubes (catheters) into the vein and artery in a leg and up to your heart to inject dye while they Xray the heart area to see how it flows through your heart, your coronary arteries, and the major arteries and veins in that area.  One reason they do this is just to give the surgeon a preview of what your plumbing looks like, but also to determine whether anything else is wrong, so that they can fix clogged arteries or other valve problems in one surgery.  My cardiologist is a specialist at this, so he did a thourough job.  The good news he gave me was that there was nothing else wrong in the heart.  The bad news was that he said my Aortic valve was really bad, almost blocked.  After some discussion we picked the suburban hospital for the procedure.  It wasn't as big or complete as the one in downtown Chicago, but still had a big cardiac surgery department and an excellent reputation, and would make it much easier for me and my wife to get to and from for appointments and visits.  Two weeks later I saw the surgeon.

I wound up going with a young surgeon relatively new at this but with intensive experience and published articles on the condition.  He went through all the options for repair:

He recommended the tissue valve, with a plan to do a TAVR if needed, and in the end what I went with.  I went away with a surgery date in November 3 days after my last planned travel of the year and a bunch of information for prep. 

It's showtime.

Knowing what would happen and when, I set out to do everything I needed to do in the fall around the house -- clear the leaves from the roof and gutters, clean all the windows and paint any frames needing it, mow and mulch all the leaves I could, even put up the Christmas Lights (but we didn't turn them on in October).  That's because I knew that I basically couldn't do anything with my arms for 6 weeks after the surgery and likely wouldn't be able to do things like climb on the roof until next spring.  That all worked out well (and was a familiar routine from my hip surgeries.  I also had a discussion with the doctor about supportive medical devices, like a walker, raised toilet seat, or shower chair, and he said probably not.  What I really need to do is make sure I can get up and down from any place I need to without pushing off with the arms, which I could.

It was an odd feeling going to a conference, talking to friends, and thinking all the time I was going into a medical procedure with serious risks and long recovery time 3 days after I returned.  We got a little good news in that my surgery was pushed back from 7AM to 9AM, meaning I could wait until nearly 6AM to make the trip in.  I followed the instructions for discontinuing most of my medications to the letter (you can't be on blood thinners or various supplements for 3-7 days before surgery like this because it effects blood clotting.  I took my shower in disinfectant, wiped off with disinfectant soaked towels, then did all that again at the hospital before climbing into a gown and a gurney while they hooked up monitors and IVs. 

I've had several rounds of surgery.  Normally I remember the ride to the OR (just like portrayed in various TV dramas, mainly what you see is the ceiling lights passing overhead), the cold of the OR, the big team of supporting people, and being transferred to the table before anesthesia kicks in -- not this time.  The next thing I remember was waking up in a bed and asking "what time", getting something like 7PM as the answer, later than I thought.  My wife was there and would clearly be spending the night.

The doctor eventually reviewed what he had done.  The procedure normally takes 4-6 hours, most of that spent in prep and closure, with only an hour of actual surgery on the valve.  That's basically what happened, but the doctor said my valve was the worst one he ever saw, and took an extra hour to remove all the deposits (or "rocks" as he called them).  In the end he been able to get it all and put in a large tissue valve, big enough to do a TAVR replacement in it twice if it were ever needed.  I liked the sound of that.  Both he and the staff cardiologist said I probably had a condition known as Bicuspid Aortic Valve, which makes your valve prone to getting fouled with deposits, but that mine was so bad they couldn't be sure.  In any case they said I had had the obstruction of the valve for a long time.

My wife said I looked dreadful.  Probably unavoidable.  I had two chest tubes (both passing thin red fluid), a catheter for urine, an IV and an arterial connection to monitor pressure and pulse in my left arm, A nasty large looking "port" in my neck to take blood samples, and a catheter going to my heart to monitor and deliver medications.  On my chest I had EKG leads and wires going into my chest connected to a pacemaker "just in case".  I had an oxygen dispenser under my nostrils and had only recently been taken off a breathing tube.  The surgeon, however kept saying I looked fantastic, as did all the nurses and technicians who saw me.  I guess I was in the Cardiac ICU (normal), and a lot of people there were being treated for heart failure or attacks, not surgical recovery, and as a result in much worse shape to tart with  I remember little of that first night -- My wife said another patient died in the night and the most vivid memories was the cheery blast of tones that preceded grim announcements of stroke or cardiac emergencies in various parts of the hospital to summon doctors and EMTs to respond.

Time to recover.

As I said I've been in the Hospital before and am a firm believer that you want to get better quickly to get out as soon as possible.  It's not that you don't get excellent care, but it's tough to sleep with all that activity overnight, and you run a risk of being exposed to germs your immune system hasn't dealt with (i.e. while your home is likely much "germier", it contains bugs your system has been dealing with successfully).  That's a big step starting in the Cardiac ICU.  Typical recovery is apparently something like 5 days, 2 in the ICU and 3 more in the hospital cardiac ward.  My case seemed a bit more like those Star Trek Episodes where some crew member is at the edge of death or being transformed into an alien until the doctor finds the right setting on the medical tricorder, and suddenly all the damage drops away. 

The dropping away process started pretty quick.  I was off the IV pain killers in the morning and could order from the "Cardicac" menu from the hospital (actually quite broad).  I wasn't feeling up to much originally, partly because of having had trouble keeping food down in some other surgery (probably just the wrong anesthetic), and partly because the breathing tube had left me pretty sore in the neck, but it was nice to eat on my own.  By mid AM they had me up, walking to the door, and back into a chair, then in the afternoon pulled out the chest tubes and the heart catheter so I could take a walk around the Cardiac ICU -- a quadrangle of rooms surrounding a bullpen of nurses, technicians, and monitors.  I made a full circuit, but felt weak and light headed, but they continued to tell me I was recovering fine.  By now they were talking about getting me out of the ICU that day, but there were no patient rooms, so I had dinner, had some more equipment removed, and my wife went home.

Not long after dinner they had a room, and put me in a wheel chair to get me there.  That was a larger, cheerier room, with less monitoring equipment but still plenty going on.  I managed to call home and let my wife know where I was and even tried to follow a football game on my phone.  Mostly though I just read, something else my care givers took as a positive sign, since most patients just zonk in front of TV.

The next day brought more solid food, and more stuff removed, as well as several walks around the larger patient ward, plus a few stairs (they told me to go up and I had climbed 3 stairs normally before the nurse could stop me and said I was only supposed to climb one, one foot at a time.) It wasn't easy, but it wasn't difficult either. The doctors were amazed at my progress and said I'd probably be released the next day, matching the fastest time out.  That was just fine.  They did say that the 3rd day was often the toughest.  Actually I think I was a little ahead of schedule there too, feeling dead tired after my last walk of the day.  I was worried something wasn't working right, but when I got a chance to look at the results of all those blood tests they were running it became clear why.  My red cell and hemoglobin levels were so low I could have passed for a corpse.  Probably a consequence of replacing my lost blood with plasma, and the fact that I lost some the bone marrow that rebuilds blood to my hip implants, but they were rising. 

I thought the 3rd day would be a waiting game, but nope.  They were satisfied I could go home and started preparing for that early on, removing the remaining equipment.  I took my first shower, set up followup appointments, got instructions and training on how to get up and down.  My wife made it in by 9AM and was there for most of the "release planning", and nervous when the hospital was engulfed in a shroud of snow.  We figured the snow would be gone by the time I was released, and mostly were right.  By 11AM the sun was shining and I was in wheelchair headed for the exit.  The trip home was more exciting than planned as another round of snow had iced all the roads in our home town making it difficult to get to the pharmacy and pick up the new medications I'd be taking, but I made it.  So far recovery has meant steady progress and no real concerns, and I rapidly reached the point where I was walking as long at a time as they want patients to walk after a month, so yes, it pays to be in shape.

Time to ponder

One thing you have with any surgery, especially open heart, is a lot of time with limited activity.  That's time to think about things, read, or just binge watch something you always wanted.  In my case one thing I did was read up more on "Biscupid Aortic Valve", and the more I read the more likely it looked that this was indeed what I had.  It occurred in 2-3% of birth and ran in families.  What it means is that the valve, which normally has 3 "flaps" which open to let blood out of the heart and then close against each other to keep it from flowing back, has two of those flaps joined, restricting how far it opens and often causing the valve to leak.  I know others in my father's family, including my father, had heart problems though I don't know exactly what problems.  Many with a Bicuspid Valve. have the valve leak enough at birth or in childhood to be detected and many have it repaired, but in others, like my case, the valve seals well enough to not product a murmur on a stethescope, and other than a somewhat reduced capacity for exercise the condition doesn't have any symptoms that would cause someone to seek more elaborate tests to detect.  Mainly it makes you more prone to building up deposits in the artery around the valve, which eventually constrict the artery or interfere with the valve opening, as mine did. 

It did make me wonder though whether any of the things I struggled with physically over the years were also related.  I was never any good at intense exercise and quickly developed a dislike for it.  I couldn't imagine "runners high", when running only made me gasp for breath and want to throw up.  I particularly didn't like exercising in hot weather, and people would often comment on the fact that I'd quickly get soaked in sweat if I tried.  All that strikes me as a likely consequence of lowered blood flow.  Still it didn't keep me from discovering that I could enjoy activities that involved sustained moderate exercise, like hiking trails that weren't too steep or playing golf on foot (not from the seat of a motorised cart), and always took the 2-4 flights of stairs to my offices rather than the elevator.  Developing a taste for this clearly helped me go as long as I did before there was a problem, but not being athletically talented or inclined was certainly a factor in my focusing on math, science, and engineering and largely shunning the normal teenage social life.

So, the bottom line again is make sure someone actually listens to your heart periodically, especially if any of your blood relatives has had Aortic Valve trouble, and don't wait to long to get anything fixed.

Warren Montgomery (wamontgomery@ieee.org)