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| Doug’s humorous story of his near death |
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| Beating Hearts and the Odds |
It all started out with fireworks. Last July 1, some neighbors
inquired if I was interested in setting off a few. Suddenly realizing that I
would be out of town at a family reunion on the Fourth of July, I let these
neighbors, the eldest of which was eleven, “talk me into” charging out our back
slider toward our shed. I knew the fireworks were only legal to light on the
Fourth, but I didn’t want to waste them. I grabbed the “works” and seconds later
ran back into the now-closed slider, breaking my nose. As I told my kids, “let
that be a lesson to you, illegal fireworks can cause serious facial injuries!”
Since we were scheduled to fly just hours later, I decided not to visit the
emergency room, but elected instead to attend the family reunion with a freshly
broken nose. This incident played a minor but important part in the heart drama
that was yet to come.
Upon returning home after scaring the relatives with my adjusted face, I went to
the doctor who decided that he needed to break my nose because it was broken.
Really. Rebraking to reset it is what he called it. That went fine, I guess, as
surgeries to break your nose go, but before the August surgery I was asked to
take a physical exam. It was here that a doctor (didn’t catch the name) made a
discovery that was important later: I had an extremely slight heart murmur, well
below a “one” on the four-point heart valve health scale where “one” means “wait
and see,” and “four” means the valve is bad and needs to be replaced. Normally
it takes many months to move from point to point along the scale, if your valve
decides to fail.
Fast-forward to mid-December. I had the flu, and like many men, I pretended I
didn’t. I dropped my daughter Lisa at work. Little did I know that saying
good-bye to Lisa would be the last words I would speak with full lung-power for
a month. I jogged home.
I am a 49-year-old guy who jogs 2-3 miles about three times a week and plays
soccer on a year-around team (Go Shamrocks!). I eat a generally low-fat diet,
but am overweight because I like cookies too much. I drink very rarely and don’t
smoke, and I don’t have diabetes. Drinking, smoking, diabetes, lack of exercise
and a high-fat diet are generally associated with heart-valve problems. None
applied to me.
After jogging home, I could not catch my breath. I thought it strange, but
possibly due to the cold weather and…maybe I did have the flu after all. The
next day, I had fever, chills, cough, and still couldn’t catch my breath. The
following day, my fever, chills and cough were gone, so I thought I was on the
mend, even though I still couldn’t catch my breath. The next three days,
December 21-23, I went to work, because I convinced myself (Mr. Denial) I was
mending, and because I was planning to take the week between Christmas and New
Year’s off on vacation and had stuff at work I wanted to “button up.”
Christmas Eve night I couldn’t sleep because I couldn’t breathe well. Even in my
state of denial, that seemed like a bad thing. I checked several web sites on
the internet that advise you given certain health symptoms. All said the same
thing: Get to an emergency room, now! One didn’t even ask for my credit card
information. I thought they were just conservative, because they didn’t want a
dead geek on their hands. I remembered a bookmarked Group Health web site. That
site said that it was okay to wait up to a few hours, but if conditions did not
improve, then I should go straight to the emergency room. Well, I didn’t want to
ruin Christmas. So I went to the family gathering at my sister’s, but announced
as we walked in that we would be going straight to the emergency room after
eating. My sister thought it was a wise-crack about her food and ignored me. But
I was serious. She’s right, though—that usually would be a joke.
At the Group Health Eastside Emergency Room, there is a sign that says if you
have shortness-of-breath to tell the receptionist and she’ll get you in right
away. I think this sign finally started to get through my state of denial—maybe
this WAS serious.
After determining that I was not having a heart attack, the ER doc decided that
I had pneumonia and prescribed antibiotics, although he didn’t like all the
extra fluid he saw on the chest x-ray. I asked my cousin, Dr. William J.
Dufresne about the “extra fluid.” Billy said that it would normally be caused by
cancer or heart failure, but in rare cases it can be caused by pneumonia. He
said he didn’t see any of my tests, but “you are a rare guy, Doug.” Billy gave
me a bit of a wake-up call, but I focused my worries on the “big C”—cancer—which
killed both my parents. The ER doc told me to see my regular doc as soon as the
offices opened. When I did, she said to wait and see if the antibiotics worked.
She also prescribed an inhaler similar to what people with asthma use. She said
to come back in a week if I was not better.
My cousin, Dr. William J. Dufresne, former Director of Prison Medicine for the
State of New York, had a nasty article written about him in the NY Times which
caused a subsequent investigation and full exoneration by the New York Medical
board; the NY Times never published a retraction, so here it is—Billy you are a
great guy and don’t let anyone tell you different.
I took the week off as planned, and the antibiotics did make me feel somewhat
better at first. I showed up for work after the New Years holiday, but I only
stayed three hours. I realized I was not “better.” I had been Mr. Denial again.
Back to my regular doctor again, she ran about two hours worth of tests, but was
not happy with any results. She finally sent me to the Hospital ER for some
tests she could not do in the clinic. She called ahead and said Dr. Susan Egaas
would do the tests. I drove myself to the ER.
At the ER, Dr. Egaas introduced herself and listened to my heart. I can’t
remember what she actually said, but translated into layman’s terms it was
something like, “Holy Crap! That is the biggest heart murmur I have ever heard!”
Later (with my permission), she would call over a class of first-year residents
to hear it. But first, she called Dr. Jeffrey Gress, who took me to the cardiac
area where I was given an electrocardiogram, which is just an ultrasound where
the baby is your heart. Four doctors crowded around the screen, and they showed
me where my heart valve was “regurgitating.” The valve was about as effective as
an old-time saloon door, flopping back and forth. Dr. Gress said, “heart
failure” and it didn’t sink in right away. Then I realized: He meant MY heart
failure! That’s what Billy had said, too! I had always considered my heart the
strongest part of my body. Dr. Gress was very gentle with this incredible
information, and helped me break the news to my wife Lorraine. I needed to have
my aortic heart valve replaced in open-heart surgery! Soon! Dr. Gress is a
cardiologist, and he would not do the valve replacement surgery, but someone at
Virginia Mason hospital would. Dr. Egaas had just possibly saved my life. I was
numb.
I also needed to make another big decision: mechanical valve or tissue
valve—metal or pig—for the replacement valve. The advantage of the metal valve
is that it lasts forever. The disadvantage is that it would require being on
blood-thinning drugs (Coumadin) for the rest of my life. That would mean no more
soccer among other things. The pig valve, on the other hand, would require no
extra drugs, but could be expected to last only 10-20 years, and then it would
need to be replaced, possibly with another big surgery. But I could play soccer.
BIG decision.
That night, stunned, I scrambled to get information. Stay calm, stay calm. I
called everyone I knew who might know anything and surfed the net like crazy. I
found something on the internet that indicated that Virginia Mason Hospital was
the best place to have this type of surgery in the state in 2003. Good. A nurse
friend who works at another hospital, recommended Dr. Daniel Paull at Virginia
Mason as a fine surgeon. I talked to four people now taking Coumadin. Did you
know Coumadin is basically rat poison? Obviously, you shouldn’t take too much! I
decided on the pig valve even though I knew my soccer team would “ham” it up,
although you could argue I did it for them.
I was told that those with my condition usually have swollen feet. And here I
thought the guy who wanted to feel my feet when I told him I couldn’t breathe
must have done his school work at Home Depot.
The next day I made appointments to have a cardiac catheterization (where they
snake a tube from a vein in your leg up into your heart) done Monday, January 9
by Dr. Gress, and the valve replacement surgery done ten days later on January
19 by Dr. Paull as he was out of town until then.
I checked into the hospital January 9 and had the catheterization. I was under
only local sedation. I was shown and told that my arteries were “clean as a
whistle”—no problems there. But remember that four-point heart valve health
scale? They were looking for larger numbers to describe me. I was told my aortic
valve was a “four-plus” after having been less than a “one” just four months
ago. How was this possible? Stay calm, stay calm.
Dr. Gress strongly recommended heart valve replacement surgery soon, as in
before January 19. Dr. Gress called Dr. Alan Hall. He was a colleague of Dr.
Paull (the rhyming docs: Hall and Paull), and was available to do the surgery
the next day. Dr. Hall asked me if I wanted to do the surgery tomorrow. Gulp! I
asked for an hour to think about it.
Then Dr. Hall went into the hall (I know, I know, I have a last name like that),
and was confronted by my sister Linda, who had heard the catheterization results
and recommendation from Dr. Gress. She asked Dr. Hall if he was going to do the
surgery the next day. Dr. Hall said it was up to me. Poor Dr. Hall was backed to
the wall wide-eyed by my sister, who tried to insist that HE insist to me that
the surgery needed to be done the next day (January 10) rather than January 19
as scheduled. My wife Lorraine, rescued Dr. Hall from my sister, but after
hearing from Drs. Gress and Hall, my sister and my wife came charging into my
room to plead sooner rather than later. I really had no choice. My sister left
and Dr. Hall then explained what he planned to do, what I should expect and
answered questions for my wife and me. As he started to leave, Dr. Hall stopped
and said in a funny voice, “Your sister is quite a pistol!”
The nurse friend called and told me that the recommendation for Dr. Paull did
not mean that Dr. Hall was not good, just that the people she worked with were
more familiar with Dr. Paull. So, I was set and didn’t leave the hospital. Open
heart surgery the next day. Yikes! What had I gotten myself into? Stay calm,
stay calm.
Pretty much the next thing I remember is waking up after surgery. Good thing,
that: Waking up after surgery. I highly recommend it. I was rather groggy, but I
recall Dr. Hall told me I probably would not have lasted until the 19th, and
that my heart valve was “shredded, destroyed” and completely un-functional.
Linda and Lorraine were rather concerned. Dr. Hall found some discoloration on
the valve and had it cultured. That turned out to be brilliant, because it
turned out to be very rare bacteria that does not grow for two weeks from a
blood draw, but does grow from a direct culture. Without that culture, they
would have had little idea what they were up against for two weeks. I guess Dr.
Hall saved my life TWICE, so he’s one up on Dr. Egaas.
When I got to the Critical Care Unit I actually felt pretty good, all things
considered. Probably because I hadn’t died. Heavy drugs might have helped. I was
bantering with the nurses. In case you haven’t noticed, I am somewhat of a
wiseacre. At one point, two nurses were talking to each other as if I was not
there, and I kept tossing zingers. One nurse turned and said, “The reason I work
in the CCU is because the patients don’t usually TALK.” I think she was smiling,
but it is always dicey kidding with those who you depend upon for pain
medication.
So what happened? How did a healthy heart suddenly fail? It turns out, I had
four very unusual circumstances line up to make this happen:
1. I had a bicuspid aortic valve. A normal valve looks like a pizza with three
same-size slices. As the blood goes through, three flaps open and close. A
bicuspid valve looks like that same pizza without one of the cuts, that is, only
one flap opens and closes, and that valve allows an opening that is only about
one third of the normal size. Because the same amount of blood goes through, the
blood goes faster through a bicuspid valve, because it effectively is forced
through a nozzle. I am told about 1-2% of all people have a bicuspid valve, and
two-thirds of those who have it never know or care—it works fine for them. For
the other third, it can eventually fail, but not normally in four months.
2. I got a small abrasion on my valve. Normal heart valves don’t get them.
Bicuspid valves can, due to the higher speed of blood flow and the extra
“flapping” the lone flap must do. An abrasion was needed for bacteria to
enter—just like your skin, bacteria needs cuts to take hold. And, just like your
skin, if the abrasion heals, the bacteria can no longer get in. So the abrasion
on my valve must have been somewhat fresh.
3. I had bacteria floating around in me. As it turns out, the bacteria I had was
one of the rarest around (a member of the HACEK group, and that group accounts
for less than 2% of the total). However, bacteria cannot normally take hold of
the abrasion on my valve due to the increased speed of the blood flow in a
bicuspid valve. So, I would have been safe, except…
4. I got the flu. For some reason, when you have the flu, it causes some kind of
swirling of the blood through the aortic valve, such that the bacteria can take
hold. The flu and bacteria are usually completely separate and unrelated, and
enter the body in different ways.
So, I beat big odds to get this one: Weird valve—slight cut—rare bacteria—flu. A
new doctor got involved, Dr. Robert Thompson, a specialist in infectious
diseases. He said that he had seen maybe three of these kinds of cases in his
career, and the last one had been maybe thirteen years ago. (My cousin Billy
later said he’d never seen a case, although he’d read about them). The hospital
could not precisely identify the actual bacteria I got beyond putting it into
the rare HACEK group—they would send it to the University of Washington to find
out exactly what it was, and then do original research to find out which
antibiotic worked best against it. In the mean time, my doctors would use a more
general antibiotic.
The rest of my nine-day hospital stay was a roller-coaster ride of good news and
bad. I was severely allergic to one type of antibiotic (horrible itching), but
another antibiotic was more effective, so I could stop taking the itchy one. I
contracted atrial fibrillation (a-fib), then it went away, then it came back.
About a third of heart surgery patients get a-fib, where the heart beats too
rapidly and not in rhythm. It often goes away—meaning the heart suddenly starts
beating rhythmically—by itself, but it may take months. In the meantime, it
means extra drugs and a tired-all-the-time feeling. One of the extra drugs I
need to take thanks to a- fib (wouldn’t you know it?) is Coumadin.
Now I am recovering. I got an itemized bill from Group Health showing charges of
over $54,000 of which my responsibility is $208. The $200 is my deductible and
they noted that $8 of the $54,000 in charges was “not covered.” I thought I
might get all indignant and demand that they remove the $8 charge—are they
trying to rip me off?—but I decided against it.
More seriously, I am overwhelmed by the number of kind people who care about me
and my family. It is a fireworks display of friendship and caring. I am humbled.
However they show it, in cards, calls, visits, flowers, prayer groups, etc., I
appreciate it. I hope they know that. All kidding aside, I will certainly try
and let them know how much their concern means to me. OK, maybe I won’t
necessarily set all kidding aside… |
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