My Aortic Dissection Story
Hello! My name is Brian S. Tinsley and
here's my story of my aortic dissection. On August 22nd, 2003 I was just
starting to play my usual Friday afternoon match. We had played about 3
games and while lunging for a low ball to my backhand side, I "cringed"
as if my entire chest had exploded. I immediately sat down on the bench
on the court as my partner said that's it. I sat there for maybe 3
minutes and we walked back into the main lobby of the club.
Then I was approached by several folks
wanting to know what was wrong with me? Anyways, a "key" mistake I
almost made was allowing my partner to drive me to the hospital versus
calling 911. The traffic was bad on Friday afternoon and no telling how
long of a delay there might have been? So, I moved out to the front
entrance of the club and we called 911. They arrived about 12 minutes
later. I was taken to Everett General hospital-about 6 miles north of my
club. I was given some baby aspirin and nitro tablets on the way up in
the ambulance. I still had no idea of what was wrong with me, just a
feeling like never before.
To my luck, EVERYTHING fell into place
for me! GOD has this all planned out for me. I was immediately taken to
the ER room, where to this day, that ER doctor was a "crucial" factor in
my survival. From what I can remember is that I was taken to the CT
scan/MRI lab and put down in this tube that completely submerged me. I
was very scared and wanted out of that thing! The next thing I remember
is this man, about 6'4" standing at the end of my bed telling me that I
had a 50/50 chance of living. As my wife-who was over with my kids at a
friends house arrived to hear this news, we all were terrified. For some
strange reason, I was completely out of it and just remember being taken
away with out any chance to say goodbye to my wife and kids.
The next thing I remember was waking
up-seemed like I was missing a few days, in a room with all kinds of
devices stuck in my body. And, with my wife right at my side. From what
I heard is this, when I arrived at the hospital my Blood Pressure was
very high and they needed to get it down as well as them not being able
to find a pulse in either of my legs. I have a 6 inch scar on my left
thigh towards my groin and a 11 inch one down the middle of my chest. I
was told that my surgery lasted from about 10:00pm to 0600am. Little did
I know that the hospital that I was taken to was the number one cardiac
hospital in the state and top 5% in the nation.
Thanks GOD! And, I also was fortunate
to have Dr. Jim Brevig on call who did the operation of replacing my
ascending aorta. I can not thank Jim and the team of nurses at the
hospital enough. I have to tell you what happened on 3/27/04, I was on
my walk while my daughter was at ballet. I decided to go a different
route and then head back and get my wife her Starbucks coffee. Guess who
I run into while walking? Jim Brevig!
Here's a great article about Jim! I got a another chance to tell him
how thankful I was for him saving my life and gave him a big hug!
Furthermore, I was able to stay in their new unit too!
So that meant, I spent the entire 5 days in the hospital in my "single
stay unit" versus having to go to various rooms during my recovery
process. The hospital stay was tough-I hated lying there and not being
able to do anything. I would see the cleaning lady come in and pick up
the trash cans and change them thinking-man... I would love to have that
Suddenly, the simple things seemed like
they were so important to me. When you are given a second chance, that's
how everything becomes. It's funny that you sometimes need a second
chance to realize how fortunate you are to have family and friends who
love you and pray for you. My dad had told me that he had asked God to
save me during the late night and was comforted when he felt God would
take care of me and see me through this. Being at the right place and
right time-and with the GOOD LORD on your side was the "key" to my
survival. With a skill saw running down my chest and clamps
pulling everything open wide for the doctors/nurses to repair me, I was
sore! Even, 8 months later, my chest is still tender when you really
press on it.
After the surgery, I could barely walk
or do anything that might risk having my chest open back up. My wife-who
is my number one fan, was incredible! She was at my side helping me with
EVERYTHING! I could not shower, go to the bathroom, get out of bed, into
bed without her help! Thanks GOD! When I got home, I ended up living in
our down stairs (main floor) as I could not make it upstairs to the
bedroom. Although, I was looking forward to a bed that was big enough
for me as my feet stuck out on those hospital beds and my son's bed that
I used while staying down stairs.
I can remember sitting up on couch just
gazing out the window feeling every heart beat. It seems like (and still
even today) any beat or funny sensation is felt and somehow sends a
message to your brain that you better pay attention. My parents were
amazing too! As well as my brother. Listen to me, forget
everything......Remember your family! They are the only thing that
As I was starting my recovery process-I
was told that I would make a full recovery in 2 months! Literally, this
was written on my "short-term" disability insurance forms. I work for
MCI-formally Worldcom (bankrupt) and luckily had pretty decent coverage
for the 2 months that I was out. Little did I know that the 2 months was
the expected time that my breast bones would be healed back-not
necessarily me ready to go back to work and just all of the sudden be
like the "old Brian" and as if nothing had ever happened.
I started a walking program while on
disability we would drop my son off at pre-school and I would start
walking and then when my wife put him finally into the class, she would
come pick me up down the road. I noticed a pain in my right hip. I had
never had any hip problems before and as a competitive tennis player, I
was in pretty decent shape. However, once you go through this type of
surgery, you are pretty much back to square one and will need to work on
getting back into shape. Chance are, you might not get back to your old
self again. That's tough, but I got a second chance! I am very thankful!
The hip pain eventually moved down to my
right calf muscle and stayed there for almost 5 months! I went to my
doctor, who referred me to a vascular surgeon-Jim Cook. He had me do a
test where they measure your Blood Pressure on your ankles and arms, do
a stress test and measure you again for your circulation. I thought
everything was OK, but when I met with the doctor again, he said that I
had a form of "claudication"
in my leg. Then, I panicked! I thought-great, my leg is going to come
off and I will be in a wheel chair. That's what happens when you
go to the internet and are not sure what you are really looking for. Be
The pain in my leg would
seem to come and go. It turns out that when you have a tear, it moves
around. Which explains why some days I wouldn't really notice it and
others I would. Especially on hills or stairs. It was determined that I
could do a couple of things. Do nothing, with the chance that it would
improve over time or, get an angiogram and see what was really going on.
I was leaning to the opinion, I will
give this one year and if it's not better, I will get the procedure
done. However, I was goofing around on the internet one night and came
across the Stanford University Website. Little did I expect a return
email as I had sent other experts on AD emails with no responses. I sent
them my story and I received an email back from
Dr.Craig Miller himself. He's probably the most knowledgeable
surgeon on Aortic Dissections on the planet.
Here's his biography! Craig put me in touch with Sunny and the
co-department head, Dr. David Liang and I sent them my medical records
and all my CT scans. These folks have a special ward called the
Marfan's Syndrome Clinic. It turns out that a majority of
Marfan's patients have aortic
dissections or other connective tissue disorders.
My time at Stanford was going to
consist of me getting some tests done on 3/19 and having a "flap
fenestration" done on my left leg and an aortic stent either in my iliac
artery or aorta (true lumen). However, after a series of tests, it
appears that my circulation had improved enough that I didn't need the
surgery. My present situation is half of my body is being fed the blood
via the "false lumen" and the other side (right) is the "true lumen"
side. Dr. Liang decided that I basically needed to work to get my heart
rate back up, after discovering that the root cause of my aortic
dissection was most likely caused from a defective valve. It turns out
that I have a "bicuspid valve" instead of a tricuspid valve. He thinks
that this is what lead to a weakening of my aorta. I originally thought
it was caused from High Blood Press/Stress and many years of competitive
tennis and some heavy weight lifting in my late teens and through late
twenties. I am also taking some medication for depression. Read my
depression section for the name of it. It seems to be helping.
My hope is that this site will help other
people find more information on living and dealing with an aortic
dissection. Part of my therapy is trying to make this site very helpful
to others. I feel fortunate that GOD gave me another shot at life and I
need to help others too!
I had my CT scan done about a week ago at
CDI imaging in Federal Way WA. They have the most sophisticated machine
in the country. I had my echo cardiogram done about 2 months ago. So, I
had my meeting with my cardiologist, Dr. Sandra Gan from Stanford a few
days ago. My CT seems to have stabilized as I am 2 days away from my 1
year anniversary. My echo seems to look good as well. But, my Blood
Pressure is high about 50% of the time and I had neglected to take my
night time medications, so I am taking them now and will start checking
my BP starting Sept 1, 2004 and track it. I am also going to really try
to make sure that I exercise EVERYDAY (7 days) a week for a minimum of
It's been almost 4.5 years since my
dissection and replacement of part of my ascending aorta. Still going
strong and thanking GOD for his blessings!
2/17/2008: I have re-written my story,
here you go!
My name is Brian S. Tinsley. It
all started back on August 22nd, 2003. It was a hectic day as
I was working for MCI at the time and was caught up in the usual work
related things. I remember I was working from home that day and it was a
sunny day. I had actually gone up to my neighborís house and was sitting
out on the deck chatting with my friend Michael about how stressful life
was and that I was contemplating buying a motorcycle from my client. She
had this motorcycle that had been apparently in a wreck, and it had some
front end damage.
I hadnít actually seen it, but since she was my
customer, I figured that I would be getting some type of good deal on
it. We were going back in forth on email about the price, and I think
that weíd finally agreed upon $1300.00. I didnít have truck, so I had
contacted my other customer, Patrick and he was going to leave a key
under his mat at home so I could borrow his truck. He lived in Duval and
the motorcycle was located in Bellevue. In the meantime, I was supposed
to play tennis at 0700 am that next day with a guy who I had never
played before but was a known good player (college level). I was to pick
up the truck at 10:00am in Duval and then drive to Bellevue to pick up
the bike (unseen and doing a favor for my client at work) at 11:00am.
It was around 12:00 is and I decided to go get some
Teriyaki for lunch. I had been there a few times before and it was
pretty good. Little did I remember just how high in sodium that Teriyaki
really is? Anyways, I went and had lunch, not really thinking about much
and on my mind the entire time was trying to coordinate, including how I
would pay of the bike the next morning.
I went back home, I lived about 10 minutes away,
but this time, I was also thinking of my match at 4:30pm. It was my
usual Friday afternoon 4:30pm match with Jack. Jack was a lawyer and a
very good tennis player. In fact, he was one of the top singles players
in the menís 45ís singles in the PNW region, a few years later; he
became #1 in the 45ís division. I had been able to beat him before and
weíd go back and forth. He was 3 years older than me.
I left my house about 4:15 and headed to the Tennis
club that was about 10 minutes away. We had a Clay court reserved for
the match. When I arrived at the parking lot and popped my trunk to go
back and get my tennis bag and shoes, I realized that I had forgotten my
shoes. So, I went racing back down the highway this time instead of the
back roads to save time and go and get my shoes so we could get the
match started. I returned back with my shoes on and hurried out of the
car and ran to the outside court, court #1. Jack was waiting there and I
put my bag down, got my racquet out and took my side.. Oh yah, I had to
supply the balls as I was late! J
Jack won the toss and elected to serve. My mind was
racing on all kinds of things, the Sun in my eyes factor when I had to
serve on that side, the fact that I really hadnít had a good warm up and
all the things that had to happen the next morning so I could buy this
partially wrecked motorcycle that I had never seen. Needless to say, the
match progressed along. I believe that I was down like 3-1 in the first
set and I remember going for a shot that was hit deep to my back hand
and I stretched for it and hit a slice backhand back and thenÖÖ.. My
life changed forever.
All of the sudden, something that can not be
explained happened inside of me that gave me the weirdest feeling that I
had ever experienced. The even weirder thing is that it wasnít that
painful. It was more of a quick sinking feeling that something was
majorly wrong inside of me. I had no clue what was going on. I managed
to pull myself walking over to the bench and I am sure that Jack could
tell by the look on my face that we were done with the match. After
sitting on the outside court bench, I managed to make my way into the
first lobby. I sat down and remember my friend Curt come up to me and
ask me whatís wrong? I donít believe I even answered him? I think stayed
there a few minutes, during this time, I had told Jack that I need to
get the ER room. The closest hospital was Providence Everett, Colby
campus, not the Major Trauma center, which was even further north. Jack
had said that he would give me a ride to the ER room, but that he needed
to get his kids out of the child daycare.
He had them in there while we were playing our
match. In the meantime, it was around 5:00pm and it was Friday afternoon
and horrible traffic going northward. By this time, I had made it to
the main front entrance lobby and took a seat. As I set there, I felt as
if I was actually some other person as I did not feel normal at all.
Something had happened to me that I could not describe. My right leg
began to go numb. I decide to have them call 911 (my first miracle
decision that God helped me make that day.) The paramedics showed up and
put me on the stretcher and wheeled me out of the tennis club and into
the back of the ambulance.
The Paramedics were great. They began to treat a
healthy active male tennis player, who looked to be in great shape for a
heart attack. I was given a couple of baby aspirin and an inhaler or
something with nitroglserin in it? Anyways, I remember not hearing the
siren and I could visualize that they were in traffic and then the siren
went on and I heard them say, ďWe need to get movingĒ and I remember
arriving at the further Providence Everett Hospital. Little did I know,
it would be the second miracle that it just happened to be one of the
top hospitals in the state for cardiac care. Thanks God!
Since I was already planning on playing tennis, my
wife had taken my son Owen who was 4 at the time and my daughter Olivia
who was 8 over to a friend of the familiesí sonís (Hunterís) Birthday
party. Hereís where things kind of begin to fade in and out.
I would speculate that I had been in the ER
department for about an hour and I remember that Jack said heíd had
called my wife and that she was on the way. I donít he knew the severity
of the situation; he just knew something was up. I remember later him
telling me that heíd actually left the ER room thinking that everything
was Ok and had to go and pick up his kids. I think heíd spoken to my
wife when she arrived. My wife had dropped off the kids at Karen and
Johnís, my great neighbors across the street from us before she got
The next thing that I can remember was being
wheeled on the stretcher into an elevator and going up some where in the
hospital. During this entire time, I did not feel like the same person,
I felt like the old Brian was going and I was in a different world and
this was all really not happening. Yet, it was. It was serious and it
was scary. I remember this technician saying that I was going to get
some pictures taken. Later I would find out that the reason for the High
Speed CT scan was my d-dimer test had come back high for a pulmonary
embolism. Thatís supposedly a potential blood clot in the lungs.
Anyways, I proceeded down this enclosed tube. I was like being placed as
a torpedo in submarine. I am not Closter phobic, but this really testing
it and I began to say, ďGet me out of hereĒ this is scary. My
subconscious mind today reminds me that the technician said that these
pictures could save your life.
I actually donít remember going back down the
elevator to my ER Triage room one bit. Hereís where the scary part
happens. I remember that my wife had just shown up and there was a very
tall man at the end of my bed. He said, I believe he had the CT scans in
his hand that I had had an aortic dissection and that he was hoping it
wasnít all the way up around the arch where my carotid arteries were. I
donít think he could quite tell then? Not 100% sure.. What I do remember
was the next statement and the main reason for writing this story to
begin with. He said, ďYou need emergency Open heart surgery and you have
a 50/50 chance of living.Ē
Now, if thatís not good news, I donít know what is!
The weird thing again, was it was almost as if I was half asleep and not
really quite fully comp rending what could have been the last words I
would have ever heard down on this earth. Did I get to say all the
things that I had wanted to tell my family? Did I get to forgive all my
enemies? Did I really even have any? What about the tennis match and
motorcycle I was buying the next day?
My wife had called my parents, who live in
Bremerton Way, which was about 2 hours away by ferry or very close to
that driving if you had limited traffic. I am actually not sure what
time that they arrived or my brother got there or my wifeís best friend
and her sister.
I was sent to surgery and Dr. James Braving was my
surgeon in charge of the entire operation. This operation is no cake
walk and is very complicated. Again, the planets had already started
aligning for me as GOD began his game plan for me to come out of the
good side of the 50/50 equation. The first planet aligned was that I was
in pretty good shape to be able to take on this monstrous operation. The
second was the decision to take the Paramedics ride versus getting
driven to the hospital on a Friday late afternoon by a friend, who in
reality might have taken me to the closer Providence Hospital that
wasnít as well known or staffed for cardiac care? Also, to this day, the
fact that I came into the ER with the paramedics versus walking in, it
saved me all the paper work! LOL!
Seriously, another part of Godís plan in this
amazing miracle he performed on me.
The operation would be a real test of a skilled
surgeon. From what I have learned is that the first thing that they had
to do for me was to get my BP down. I imagine that my actual operation
didnít quite start till around 9pm that evening by the time all the prep
work was done. By this time, my parents had arrived, my brother, my
wifeís friend and her sister Jane. I remember my dad coming up to me at
home after I had been out of the hospital for a few weeks, how he had
asked God for him to allow this surgeon to have a successful operation
and that he prayed for Godís favor to allow me to live. My dad said that
he had asked God for this prayer around 1:00am in the morning and my
dad, by faith got an answer from God that it would be granted.
One of the main things that they do for this
operation is to get your body temperature down. They do this by putting
your body on ice. The reason for this is that they need to get your body
core temperature down to help lower your BP and what eventually happens,
not 100% sure of the order, but you are placed on the heart and lung
machine and then I believe that they get that working correctly and they
began to cool your heart down to the point where it actually stops
beating. Think about that! You basically are only kept alive with your
brain as everything else has shut down. Itís like the motor of your car
is not longer there and you are coasting down the road.
During this time, after the stop your heart is
where I believe the real training and expertise comes in. From what I
have been led to believe is that there a few surgical clamps placed on
the aorta and then right above the aortic valve is where my dissection
began. They end up actually cutting out a piece of your aorta and
replacing it with a Dacron graft that is sewn back onto the aortic value
and then the other end back to the aorta, some glue is also used in
there somewhere to secure the walls of the aorta back together!
I donít really know what exactly happens next, but
the point is that thereís some amazing skill required and I know that
God was working with my surgeonís handís to guide him.
My wife tells me that the operation went on through
the evening and it was over around 7:00am the next morning. Oh yah...
almost forgot, you get the privilege (even though you donít feel it at
the time) of having a 14 inch scar down the middle of your chest thanks
to the Skill saw that use to cut you open!
I donít really remember that much until literally 2
days later, Sunday morning that I was alive and had this cuff around my
arms squeezing me for my BP what seem like every 15 minutes. I had a
draining hole in my chest, a tube into my carotid artery, a cafeter and
a few other monitoring devices. Some of the things that I can remember
in the room, which by the way, and another of Godís mysterious miracles
was that I was in the new wing of the hospital called the Single Stay
units that actually Dr. James Brevig was instrumental in getting built!
They were very nice rooms. Some of my memories
included my wife being there right by me on my left side sitting in the
chair and holding my left hand. She was there by my side, I know praying
for me and caring for me like a true wonderful wife that she is. Thanks
GOD for my wife! I am so thankful for her! I remember the flowers that I
saw around the room, I donít really remember too many other visitors as
my parents-who are both miracle workers had come to stay at our house
and were taking care of my children. I do remember my brother coming in
and I can vaguely remember the look on his face that WOW.. My brother
had been through hell kind of look. One of my favorite radio stations
that I liked to listen to while driving home from downtown Seattle back
to Everett was smooth Jazz. However, I remember that it seemed like the
radio played 7*24 with that station only. To this day, almost 5 years
later, I do not listen to that station anymore.
I also remember taking walks around the floors, I
would carry my sack of pee with me and wonder very slowly around the
halls, trying to do a bit more each day and then come back and lie down.
I remember I would always be freezing cold and they would have to pile
on 2 heated blankets to warm me up.
As my 5 days came to near and various encounters
with Dr. Brevig, who I owe my life to and his great PA assistance, Jill,
I was ready to leave. But... then, before you can leave and actually I
donít really remember eating hardly anything the entire time there, the
nurse, whoís name was Marne says, ďMr. Tinsley, in order for us to
discharge you, YOU need to have a BM.. A good old bowel movement! Yikes!
Are you kidding me! You are going to torture me by having to go the
bathroom? Apparently, this is standard operating procedure. Oh... I
almost forgot, I think that I got hosed down that last day by the nurse
for a pseudo type of short shower. That was embarrassing!
Well, you can imagine after being filled up with so
much anesthesia and little to no food, how in the world are you able to
have a BM? Whereís the roughage? Whereís the beef? Fiber? Bingo! The
pill! It was a tiny suppository black pill that was handed over to me.
Itís during the tough times like this that you are glad you have someone
to go through this with down to the minute details. I needed my wife to
insert this stupid pill. When your chest is cut wide open, you can
hardly move your arms anywhere, any direction for the first 6 weeks!
Your wife on here wedding day, although not officially announced that
she would install suppository for you, managed to help me get this done.
I was able to produce that required BM, which turned out to look more
like a small dark black piece of cat poop! Sorry to bother you with the
details, but itís all part of the plan that I had to go through.
They discharged me after 5 days. I can not begin to
say enough about that facility and how great of care I got. What is even
scarier is this fact. Fast forward 4 years. It was August of 2007 and I
was down at the watching some of the tennis matches at the Wa State
Open. I ended up running into Josh Hershfield a buddy of mine that lived
on my floor while at WSU, my first year of college. He and I were
talking about my situation and what had happened to me. He mentioned to
me that his mother had died of one! Then, he asks me if I had read the
Sunday paper and heard about the story of the ladyís husband that had
died at an Everett Hospital. I didnít think anything of it and watched
some more tennis and went home.
When I got home we ran some errands and I remember
asking my wife where the Sunday paper was. She said sheí put it out in
the recycling bend already and I went out and got it. I pulled it out
and actually started reading the story on the front page. It was about a
ladyís husband who had died of an Aortic Dissection at the Providence
Hospital in Everett, Way, at the main campus.
Hmmm I said, thatís interesting as I read further,
I saw the date of the visit, it was exactly 40 days before I had
arrived. I ended up calling my friend Ron, whose wife actually was in
charge of the Nurses there and asked here about this case and who was
the ER doctor on call? She told me it was doctor so in so. Guess what?
That was the same ER doctor that I saw 40 days later. I was mesmerized
that this personís death is probably what saved my life. What had they
learned about his death that helped them diagnosed mine more quickly?
Why did he have to die and not me? What if I had
been there 40 days earlier? Would it have been my time? I actually had
to go sit down and really reflect on this sudden revelation and again
thank ALMIGHTY GOD for this miracle of a second chance of life. For
coming out on the good side of the 50/50 equation. I got the ladyís
phone number and called her. She was so thankful that I had called and
felt an immediate connection with her. A deep debt of gratitude for her
husband paving the way for me to live. She was fighting with the
facility to make sure that the nurses would be able to have more say in
questioning an ER doctor if they saw things that looked funny or things
that they thought should be done and were not. Itís a very sad event
that it took the loss of her husband to save my life, but I thank God
that the hospital was able to turn the tragedy into something they could
learn from and become a better trained facility, which ultimately led to
I remember riding in the wheel chair down to the
front entrance of the hospital. At the time, my neighbors, John and
Karen had this big old Lincoln 4 door; it was big, with big doors and
fairly low to the ground. My dad drove up in it to pick me up. I was so
thankful to see him. I love my mother and father so much and there were
very instrumental in my recovery and through their prayers and strength,
they helped me immensely and I thanks GOD for them.
On the way home, I really became aware of the
sights; I had been cooped up in the room for 5 days and hadnít seen the
light of day for a while. I think I was discharged finally after all the
paperwork, bathroom, and shower and BM specimen around 1:30pm. The
drive home with my father was comforting. Heís a very strong man. Not
only physically, but spiritually and mentally. Heís an Aggie! His father
left him at the age of 3 and he lived in Texas and grew up living with
his Mother, his motherís mother and his motherís brother in a small town
called Jefferson Texas. Although my dad didnít have a dad for very long,
he was and still is the best dad in the world to me and my family.
The drive took about 25 minutes to get home, not
going over any major bumps in the road or fast turns. We pulled up in
the drive way and I got out and walked very slowly into the house. I
remember that my sonís bunk bed, top bunk was brought down to the living
room. I would have to lie down quite a bit and rest as I wasnít feeling
that great at all and was on some heavy duty pain pills and pills to
help me sleep.
Itís during these times that you really realize how
blessed you are when you have a support system like your family. My
mother ended up staying with our family for almost a week straight to
help with the kids while Kathy, my wife helped me. One of the humbling
experiences that I had to endure was the fact that I could not got to
the rest room, number two without some help when I was finished. I think
you get the picture. My wife was amazing. She didnít think anything of
it, but I was very humbled, embarrassed, but she just said it was like
taking care of the kids when they were little!
I remember my parents also bought us this shower
chair and device that hooked on the shower with an arm that you could
use to spray you all over. Again, I had to have my wife help me get
cleaned up as I couldnít do it for a while. You never really realize
what debts your wife will go to for you or just what unconditional love
really means until you have experience agape, Godís unconditional love
for one another. My wife is full of it and I am so blessed to have her.
One of the other things that I was fortunate to
have was good insurance. I has signed up for both Long Term and Short
term disability and you never think you will need them, you just check
the boxes when you sign up for your Health care services each year.
However, I ended up having to go on Short Term disability for 2 months
and my wife helped me with this as well and coordinating all the paper
work, not to mention keeping track of the daily medications that I had
to take. I was fortunate at the time to also have a great boss name
Drew. Heís a Christian like me and was very caring and we cried together
a few times as I was very emotional, burst of crying often that I was so
happy to have survived.
During my time at home, I received some nice
flowers from friends and my tennis buddies made me a nice basket of
movies and goodies. I remember a plant I got with a beta fish in it
that lived off the root of the plant. I think we had that plant and fish
for almost 3 years! Thanks Intermec! I would sit on my couch and stare
out the window for hours. I would since and feel every heart beat while
doing this. I would wonder, what is that feeling? Is something wrong? I
was very paranoid about every little feeling in my heart area.
Eventually, I finally was able to ignore every single beat. About this
time a few more things happened. I remember receiving a call from my
brother Kevin, it was relatively early in the am and I was in bed. Ring
RingÖ Hello I said, my brother said, did you hear the news? I said no! I
am still trying to sleep. He said that John Ritter had died of an Aortic
Dissection. I said, thanks.. just want I need to here! My brother is the
best brother in the world. He is 14 months younger than me and is very
smart. A great Christian man. At the time, he was doing well in his
mortgage business and actually was able to pay a couple months of my
mortgage and my American Express bill. I think he spent about $7K on me
and didnít ask for any of it back! Thatís TRUE love and my brother is
the epitemy of that God Like brother that everyone would like to have! I
am so blessed again by the GOOD Lord for him.
John Ritter, the John Ritter of threeís company
that I always used to watch? Yes.. It was true! He did die of an aortic
dissection. At that time, that was all I knew. John Ritter dead at the
age of 54, September 12th, 2003.
As time went on, I was able to start gaining my
strength back and able to get my lungs back working. I had this Blow
Tube thing that I had to blow into a few times an hour it seemed like to
work on the pressure and capacity of air that my lungs could produce. I
also remember that I was given this heart shaped red pillow from the
hospital to hold close to my chest if I had to cough. I still have this
pillow today. As well as this teddy bear that my wife had taken my kids
to build a bear to make for me. It has a recorded message that says, ďHi
daddy, this is Olivia and Owen, we hope you get better soon, we LOVE
YOU!Ē I have this bear right by my night stand, almost 5 years later! I
love my wonderful kids, they are the reason for my persistence in
helping others, I got a chance to still be with them and some of us have
not been so lucky. If I can and I do, help others, itís my way to give
back.. Which I will get into in a few.
My son was going to a preschool across town and
there was a golf course near there. It was surrounded by sidewalks. As
it was time to pickup my son, my wife would pull into the parking lot of
the school and I would start walking down the street seeing how far I
could walk each day. Little by little I would go further.
However, I started to notice a pain in my right
hip. I had never had any hip problems and thought this was wired. It
seems to have moved down to my right calf after a week or two of daily
walking. I was concerned as I had to actually stop walking for a while,
sit down and rest for a few before I could go on. I decided to go to my
doctor, he sent me to get an ultrasound of my legs/arteries and I
remember going to the doctor and they said I had ďclaudicationĒ and it
sounded serious to me. I thought to myself, what in the heck is going on
now? Would this be permanent? What is causing this? I found out that
claudication is something that older folks get from hardened arteries
and itís really the inability for blood to flow through the artery
freely, itís getting blocked to some degree.
About this time, I started doing my own research on
the net. I would put in the words ďaortic dissectionĒ in the Google
search engine and everything that popped up was scary. I couldnít read
but a sentence or two and it was all about death and not good news at
all. I was frightened. I was wondering why? Why isnít there anything
positive? I happen to stumble across the term, Marfan syndrome and it
turns out that many of those folks with that disease are also very
susceptible to aortic dissections. Specifically, they have very weak
connective tissue which cause the aorta to be week and easy to dissect.
While searching, I came across the Stanford
University site for the center for Marfanís syndrome and Connective
Tissue Disorders. I ended up sending an email to them and was asking
them about my situation with the claudication symptoms. I had also read
about a procedure called a flap fenestration where the basically poke a
hold in your false lumen over to your true lumen and this opens up some
blood flow. I ended up getting in touch with another miracle person
from God, Dr. David Liang. Heís the head cardiologist at Stanford in
this department and works closely with one of the top surgeons there as
well, Dr. Craig Miller.
Heís known for being a one of the best in the world
for Aortic Dissection and aortic valve replacement surgery. I told David
about my symptoms, sent him a copy of my latest CT scan I had at the
time. I ended up going down there, I was scheduled to have a flap
fenestration done on my left leg and a stent put in my right leg by
their top radiologist. My parents also met us down at Stanford and were
going to watch the kids the day of the surgery. I was sent through a
battery of tests for blood flow and an echo cardiogram and CT Scan. What
was the pits was I had my CT scan done on a Saturday, my surgery was to
happen on that following Monday. During my CT scan, just after the
lovely injection of iodine/contrast, the CT machine quick working! They
didnít get the pictures.
They said, IĎd have to come back the next day as I
could not have more radiation that day. I had to get it out of me, which
is a routine I have to go through yearly, with the once a year CT/Angio
and the 6 months Echo cardiogram. It was really cool, we can back the
next day and I got the CT done, then David took us into the main room
where we say the CT scan up on this big TV screen. From the tip of tip
of my head to my lower extremities, I could see everything. An Aortic
Dissection like I have shows up like a white line running down the
aorta. In my case, it was down the middle of my all the way down to my
left iliac artery. My AD runs literally from about 1 cm above my Aortic
Valve all the way up both carotid arties and all the way down to my left
leg right above the point of bifurcation. After the review of this, I
finally was able to realize what a double barreled aorta really means.
Itís basically having one half of your bodyís major organs being fed by
one side of your aorta, the true lumen and the other half is known as
the false lumen.
After the review of the CT scans in their fancy
studio, we proceeded to go up to another section where I was given a
treadmill test and I believe something called a ďburkeĒ test. I was all
rigged up with these electrical nodes all over my chest which had to be
shaven in some areas. With a dry razor, that is not fun at all! They
basically take the readings of all your vitals before the exercise
begins, then they do the actually treadmill test and after 15 minutes I
was toast, I was immediately put back on the table and they took the BP
readings from all the different cuffs that I had attached.
We then went into a near by room and reviewed the
Echo cardiogram that I had actually had earlier in the day. Those are
the easiest tests to get done with the tremendous amount of detail that
they can tell. If you ever are told that you can have an EKG versus an
Echo Cardiogram, I would opt for the EchoÖ Itís way more definitive with
key information. In my case, it was determined here that I might
actually have what is called bicuspid value. From what I gather, itís a
form of a connective tissue disorder that also leads to the weakening of
the aorta. Whatís even more interesting is that David was amazed that
the technician that actually did the Echo was their most senior tech and
had missed calling this out. However, it was really hard for David to
find it, but he did see the leaflets stuck together. This also leads to
some leakage due to two of the leafs being stuck together.
We then went back to Davidís office and this was
still all on a Sunday! Thatís how amazing David was, heíd come in on his
day off to help me! Sunny his assistant was also there and amazing! That
group at Stanford is the best of the best! David reviewed all the
tests, Echo, CT, physical exam and he determined that he would call off
the surgery scheduled for early Monday morning. I think I had to be
there at 5:40am on Monday.
I was relieved to not have to go through the
surgery! One thing that David determined was that I was suffering from
depression. A common event from people who go through open heart
surgery. So, I was prescribed to take the drug called Lexapro, 10
milligrams to be exact daily. I am still taking this today, and I
believe it helps me.
2. the starting of my website,
When I returned back home, it was late in 2003 that
I decided I wanted to give something back. I was literally given a
second chance at life. I was able to come out on the good side of the
50/50 equation. I was alive and great full and full of gratitude. What
could I do to help? I had always dabbled around in the domain name
business and actually had sold a few domain names in my past and made a
small amount of money. I had actually been using the Microsoft Front
page program and had built a small domain name website.
I started work on building the AorticDissection.com
website. Well, it turned out that someone had reserved the
Aorticdissection.com, .org, .net and .info names trying to capitalize on
the John Ritter death. How pathetic I said to this guy that had reserved
them. I ended up paying $100.00 for the names if I remember right.
I started my site with all the information that I
could find related to the subject of Aortic Dissections. I wanted to put
my story out there, so I created a Personal Stories section. It wasnít
long before I started getting questions sent to me on email about AD.
Dr. David Liang and Dr. Craig Miller said that they would help me with
the questions, second opinions and actual surgeries of patients that I
sent them. As the site began to get more notice, I got more requests to
add stories. I also built a newsletter that I could have people sign up
for and send out information to them when new stories are added. As of
2/16/2008, I have 159 stories.
I also started a Forum with the site. Itís a place
where other survivors and folks can come and share their experiences and
daily life struggles and victories that everyone goes through. An Aortic
Dissection affects not only the patient but everyone around them. As of
today, we have 726 members, over 1, 590 posts and members from all over
the world including places like India, Australia and China. I have been
able to team up with the top surgeons in the world. These people take my
referrals and also provide second opinions and help reviewing CT scans
as well. I have Cardiologist, Vascular surgeons and Radiologist that
help me. I am so thankful to be able to give something back!
My goal of the site was to spread the word and
knowledge about just what an Aortic Dissection really entails. Itís also
my goal to help educate everyone, including ER doctors on what to look
for. I have teamed up with various AD experts around the world and am
very proud of the lives that we have been able to save. The second and
third opinions that we have been able to offer. The amazing benefits
that they forum provides and the personal stories section. Every time I
get an email, itís usually in the first one or two sentences that I am
thanked for putting the site together. Thatís what I feel God called me
to do was to give back all that I can to help others. Thereís the Tyler
Kahle story on there, as well as some of the latest genetic testing that
is being done.
They have found a link a gene that has been shown
to cause AD. Just look at the Kahle story, the Dad, unfortunate death of
Tyler and then his brother and uncle having a dissection. Itís sad, but
this helpful information has led to doctors for instance at the
Methodist hospital changing they way the ER doctors treat patients that
might be potential AD diagnosed. They developed a new check list of
questions (posted on my site as well) on what to ask, such as is there a
history of AD in your family for starters? If so, be warned to go out
and get yourself and your family as well. See if you can get an Echo
Cardiogram done as not everyone can go to the doctors and request a CT
scan. In the case of John Ritter, it turns out that he apparently had a
full body scan, a few years (2 I think) before his tragic death, yet
they claim no enlarged Aorta or Aortic root showed up.
Today, I am back playing competitive tennis. I
finished #7 in the Pacific Northwest Menís 45 singles division. I am
captain of my USTA 4.5 team, I play tennis both singles and doubles 4-5
times a week. I can play a 3 hour singles match. However, and having run
6 marathons before, I can barely run/jog one time around a ľ mile track.
Unfortunately or fortunately depending on how you look at it, thatís
just the way planned for it. Itís largely due to my claudication
symptoms. However, I can honestly say as well, that your body produces
now veins that help carry the blood back up to your heart and from when
I started back playing tennis, I could play only a point before I would
have to bend over and take a 30 second rest to get my calves from
aching. Fast forward almost 3 years, and I am able to play a 3 hour
competitive singles match and not even have to sit down between the odd
games on the change over. I also am doing some light dumbbell work as
well. I donít go over 25lbs, my bench pressing of 325lbs days are long
closing, I am proud of the work that I have been able to get done so
far. Itís only the tip of the iceberg. There is a mountain of
educational training and awareness that needs to occur on a world wide
level and my goal is to be the catalyst to help drive this awareness
and most important of all, prevent unnecessary miss diagnosed deaths
from lack of training and knowledge. Knowledge is power and because I
have been given the second chance at life and Godís grace to continue
living, I must use my passion and determination and will power to drive
forward and spread the knowledge to the people who need it the most,
everyone single human being on this planet.
Happy New Year! Almost... Been a while... I am still trucking
along, just hurt my back yesterday playing tennis and had to miss this
mornings 05:30am doubles. I am sitting here with my back brace on trying
to hope that it gets better soon! It's been a bit over 6 years
now.. I am still taking my BP meds and my aorta has remained stable. In
fact, I believe that I don't have to get yearly CT's anymore-that it
will be every 5 years now.. Best of luck in 2010!
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