Ruptured Ascending Aortic Dissection At 49
On March 23rd,2000 I got up as usual it was 5:30 am. I put the coffee
on, fed the dogs, let them out, and then poured a fresh cup of coffee.
As soon as I sat down to drink it, I felt a gaseous burning sensation
come up from my stomach to my throat. My legs started to go numb, and I
was getting dizzy and faint. I knew something was really wrong, and that
I had to wake my wife to get help. I tried to walk to the bedroom while
calling her name for help. I made it all of 15 feet, before I felt so
faint that I just lay down on the floor in the hall. She heard me and
called 911 immediately.
When they finally arrived, (they had to be woken), they put me on a
stretcher and put me in the ambulance. They gave me an EKG while sitting
in the driveway. This showed them that I wasn't having a heart attack,
and that my heart was strong. But, It also took away the urgency of my
situation in their minds, and in the minds of those at the emergency
room at Williamson County Hospital. Once I got there, at 6:30 am, I
waited alone on the stretcher in a staging area for over an hour before
anyone helped me. I saw the doctor casually strolling outside, and a
nurse finally came in and said I probably only have a Virus! I was in
such pain. The doctor finally came in. I told him my stomach hurt bad
and that both my legs were numb. When he could not find a pulse in my
legs, he ordered a CT Scan. The results showed that I had an aneurysm
rupture. The doctor immediately called the head cardiologist for the
hospital, and after reviewing the CT results determined that they could
not handle it, and to forward me to the Vanderbilt University Hospital's
Heart Trauma Unit. So, back into the ambulance I went.
Upon arrival at Vanderbilt, it was like something out of the movies.
17 people from the Heart Trauma Unit were all over me the instant I
arrived. They told Cristi, my wife, not to worry about how it all
looked, that is what they do, and each one had a specific job. They ran
another CT Scan, and took me directly into surgery at 11:00 am. Yup it
took that long thanks to the first hospital taking their time. That is
the last I remember until waking up later after surgery.
I was in surgery for 5 ½ hours. That must have seemed like a
life-time to my wife. During that time, they told her that my chances of
surviving the surgery were only 3 to 6 percent. That only 1 out of ten
people survive the surgery, and that if I did survive it, they would
then have to possibly amputate my leg, since it has been without blood
for so long. They also told her that I lost one kidney due to the lack
of blood flow, and also told her that since they had to stop blood flow
for a portion of the surgery, that I may have some problems with my
brain function as well due to a possible stroke while being operated on.
Also, they said that due to the heavy sedation required for the surgery,
I probably would not wake up until 2 to 3 days later.
I surprised them all, later that night I woke up! My wife whispered
into my ear and I woke up! She was only allowed to see me for 15 minutes
every 2 hours, and this was her first visit 7:00 pm. The first thing I
thought of was “ Wow, no more pain in my stomach, and my legs felt
fine” So I began to wiggle my toes. She went and told the nurse, who
was very surprised. Later that night they took the Life Support
apparatus out of my mouth and throat. By morning I was drinking liquids
and eating ice chips. The doctors were amazed. I was moved out of the
ICU the following day to a step-down room, where I continued to recover.
My wife said she was asking the doctors what to expect next, and they
finally laughed and said, " He's done things we never thought
possible in such a short time, and everything we have projected he has
proven wrong.. We don't really know what he will do next" They
released me from the hospital on Weds, March 29th, just 7 days after My
Open Heart Surgery.
The doctors don’t believe I would have made it, if not for being in
such good health before hand. (That seems contradictory considering what
happened ) I have a healthy heart, good cholesterol, and never had high
blood pressure. It seems that the cause for what happened to me is
congenital.
So what did they do to me? I had an ”Ascending Aortic Aneurysm
Dissection Rupture”. The rupture caused my aortic valve to tear, so
they replaced it with an artificial valve. They also replaced a part of
my artery with a new 4 inch Gortex artery. As to my right leg, the one
they might have had to amputate, They made 2 large incisions in my calf
to relieve the pressure when the blood finally did get back into my leg.
This procedure worked, and thus, I am still walking on 2 legs. However,
They will never be working at 100% again. As for my kidney, tests after
surgery proved that I was OK, and didn't lose any functionality. I am
now focusing on getting over the surgery, finding out what my new base
line is, and then pursuing getting back into shape. The doctors told me
I would need to take it easy for at least 6 weeks, and not to lift
anything more than 5 lb. during that time. I hope to get some tests that
will show me if I have any more weak arteries that I should be concerned
about. This will help me establish my new base line. Since I was already
eating fairly healthy, my dietary changes will be minimal. My first
appointment with my doctor since I was released from the hospital is
next week, April 14th. I hope to have a lot more answers to my concerns
after meeting with him.
I am walking around the house, and can go for short walks around the
yard. Every day I seem to get stronger than the day before. So things
are looking up! Looks like I will be reading a lot over the next few
weeks.
A friend of mine asked me, “ If this happened again, what would you
do different?” I told him that I would skip Williamson Hospital and go
directly to Vanderbilt!
MY Visit with my Heart Surgeon April 14th. He informed me that
everything looked good, and he cut back on all the medication I had to
take. I now take Coumadin, Atenolol, and 325 mg prescription Aspirin.
They first gave me Lopressor as a Beta Blocker, but that made me too
lethargic, so they changed it to Atenolol. My surgeon released me, and
told me to get a cardiologist for my on-going care. The Vascular surgeon
that worked to save my leg was my next appointment. He had me take an
MRA to map out my arteries and get some size measurements to track,
using the MRA as my base-line. He wants to see me every 6 months. The
hospital wants to track my recovery. Also, I found out that my case was
the main topic of the doctor's conference there. My surgeon sure was
proud of his achievement. I am too.. It is so good to be alive! Thanks
to him and the staff.
It has now been 12 weeks since my ordeal, I am doing OK, but
constantly wondering how this happened to me. I am 5'8" tall, 170
lbs, have worked out with free weights for over 14 years, 5 days a week.
No family history of aneurysms. My grandmother lived to age 94, my folks
are in their mid 70's, and here I am, almost 50 and I get the surprise
of my life.
I am trying to deal with it. I would love to find out what my new
limits are, but none of the doctors can tell me. They say that non of
the classic Connective Tissue Disorders fit me, except for the fact that
my middle wall of the aortic artery was weak. Therefore they say I am
one of those cases that they say; cause " Unknown". If I knew
what my limits where I could get on with living without worry.
There are no tests that can tell me if I have further thin walls in
my arteries. If there was a test, I could take corrective measures, or
if they didn't find any thin areas, I would have peace of mind.
They tell me that they do not want me lifting more than 40 lbs for
the rest of my life. Guess they are playing it safe, since they don't
really know the cause. Sure wish I knew some of the answers. I want to
find my new limits, but the penalty for exceeding those limits could be
deadly to me.
On the positive side. I am feeling stronger every day. I have to
force myself not to push it too much. I exercise everyday, lightly for
now, but I plan on increasing it. I do not lift much weight, just trying
to tone up and get some cardio exercise in too.
One of the hardest things for me to deal with is sleeping. I can hear
the artificial heart valve clicking, and also feel a thumping. I think
the thumping is the Gortex aortic portion of my artery hitting my inner
cavity wall as my heart beats. That is my guess. I know tissue hitting
tissue is a lot softer than a man-made piece of hose hitting tissue. So
at night, I lay in bed and hear the clicking and feel the thumping. My
wife can even hear the clicking as she tries to go to sleep next to me.
We went out and bought a sound machine, ocean waves, rain, mountain
stream, to drown out the clicking and let me sleep. It has helped, and I
am getting used to it. I guess it is kind of like living next to the
railroad tracks. Ya just get used to it.
Well, that brings me up to date. I found this site, and found that I
was not alone, there are many of us out there that don't have the
answers to our medical ordeals. I also wrote my congressman letting him
know that we need more funds for medical research in this area. I hope
to update my narrative as time goes on. I found the ones I read very
helpful. I hope my experience may help someone also. May you all live
long healthy lives.
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Update 8 Sep 2000
It has been just over 5 months since my surgery and I thought I would
let everyone know how things are going. Shortly after my last update in
April, I did get depressed. Guess I had a dose of the "Why Me"
syndrome. My wife wanted me to seek professional help for my depression,
but I wanted to work it out myself. I started to do some light workout
routines at home, and started to research everything I could on the
Internet about my condition. I wanted answers to my
"Congenital" Connective Tissue Disorder" I wanted to find
out what would promote good connective tissue development. The doctors
had no answers, so I went looking on the web. I did find that Vit
"C" and "E" helps promote collagen, so I began
taking 1,000 mg of "C" and 400 units of "E" daily. I
also found a great web site message board for people with heart
conditions on WebMD and started talking with the people on there. They
were able to provide me with good information, and interaction. Another
great help was talking with people here in our club who wrote to me, and
getting updates from Bill regarding new narratives. I felt that I could
now help those who were new to our club, even if just by writing to
introduce myself and saying hello.
I stayed out of work for a full 3 months. I think I needed that time
to get myself together. My wife and I went to Maui on vacation just
before I returned to work. Imagine That! 10 weeks after surgery and here
I am riding a bike down a volcano in the islands. I just paced myself,
and really enjoyed living!
When I returned to work, everyone was very supportive. They let me
leave early if I felt tired, and kept me busy working locally instead of
traveling. I joined a new gym that was only 1/2 mile from my office. I
have been going there every day at lunch time, and walking on the
treadmill for 30 minutes at 4.4 mph, and then working out with light
weights. I am not exceeding the 40 lb limit my doctor put on me.
I also went to the Heart Patient Rehab, but they didn't know what to
do with me. They said I already know how to exercise, and that there was
nothing new they could teach me.
I told them that I was looking for a therapist that was familiar
working with Aneurysm patients, (that was asking too much..there aren't
that many of us around for them to work with), and that I wanted to find
out if I was doing any exercises that were wrong for my condition, and
if so, what exercises should I do in place of them. They referred me to
their hospital Sport Medicine Rehab Clinic. I got pretty much the same
reaction there. However, they did want me to take a Stress Test. (I told
them that it was the plumbing going into my heart that seems to be the
problem, not the heart itself.) My Cardiologist and my Vascular Surgeon
said it would be OK to take it , so I did. I did real well, they got me
up to 92% of my maximum heart rate. I was walking at 4.2 mph at a 16
degree incline by the end of the test. The test showed me at what point
my pulse jumps my blood pressure real high. All I have to do now if not
let my pulse get over that level when I work out.
I am sticking to my doctors advice regarding my not lifting more than
40 pounds until after I meet with my doctors again in October. I have
appointments with both my cardiologist and vascular surgeon that month.
I will have a CT scan to see if I am stable, hopefully there will be no
new aneurysms developing. I want to have a real good evaluation, so I am
really sticking to the doctors orders till we review the results and
hopefully make some changes if the results are good.
I will update my narrative after my tests in October. I feel so good
now, that it is hard to even believe that this has happened. If it
wasn't for looking into the mirror and seeing the scars, or for having
to take my medications, I would not believe that I had an aneurysm
dissection. Thanks again to everyone, you really have helped me cope
with everything that has happened to me this year.
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Update 28 Oct 2000
I was really waiting for this checkup, my 6 month review after the
doctors released me. I actually had 2 appointments, one with my
cardiologist, and another at Vanderbilt Medical Hospital with my
Vascular surgeon.
My cardiologist visit went real well. He said that I looked real
good, and that my heart sounded fine. I told him that I was back to
working out. I workout for 20 minutes each morning, mostly stretches,
some light weight exercises for the chest and shoulders, squats and
crunches. At lunchtime I walk on the treadmill for 30 minutes and get 2
miles in. I walk at a fast pace, 4.4 mph. And go up to 4.6 for 5 min of
that. After the treadmill, I lift weights for 30 minutes, but don't
exceed the limits they put on me. I don't lift over 45 lb. Whew… and
to think, I used to bench press 285 lb. and squat 410 lb. in the weight
rack.
This routine has provided me with some good benefits. I really feel
good, and I have gained some muscle back and also have gotten some
muscle definition back. My Cardiologist still wants to see me every 6
months, and for me to also continue on the medications I have been
taking. 5 mg of Coumadin every day, 50 mg of Atenolol, a beta blocker,
and 325 mg of Aspirin EC. By the way, my PT/INR levels have been stable
now for the last 3 months.
My next visit was to Vanderbilt to have a CT scan and see my vascular
surgeon. Along the way I stopped up to see my heart surgeon's assistant
and say hello. They still call me a miracle! I told her about this site,
and some of the other sites I frequent. She asked for the links and also
if I would mind talking with some of their patients, if they wanted to
talk with someone who has been through it. Of course I said yes. Being
part of these sites is like having a support group, then once you feel
better you help others, making you feel even better! All of you have
really helped me get out of the post operation depression.
OK, so on with the story. My CT scan showed that the dissection flap
was doing well, and looks to be scarring against the wall as it should.
He did notice that there were some changes since the last CT. This got
me concerned! There was some widening in a few places, around 2 or 3 mm.
The largest spot is just at the point of the thoracic/abdomen area. It
measured 3.1 mm at my prior CT, and is now 3.5 mm. Well, that sure
dampened my spirits. He said that it is probably nothing to worry about,
it could be just settling after the surgery. He told me that he was not
concerned at this time. It could be another weak area, but that we
really don't have many "Trend Points" to tell yet. They took
the measurements from my CT that was taken at the time of my surgery,
and compared that against the one they took yesterday. They didn't
measure against the MRA I had in May. My doctor said that comparing it
to the CT at the time of my surgery may be the reason for the
difference.
He also mentioned that normal would be 3.0 mm, and that he would not
start worrying until it got over 4.5 mm and serious consideration at the
5.5 to 6 mm range as to corrective action to be taken.
He also pointed out that the aortic wall is unpredictable. It can
stabilize, then grow again, then level off and stabilize, or
deteriorate. He also mentioned that there is nothing I can do about it,
what will happen will happen, we just have to watch it! I am really glad
that they want to see me every 6 months for a CT and exam. That could be
my life line!
I also found out that I did lose some function of my left kidney, but
it is very minor. In fact, there are some portions of a kidney that can
regenerate, and mine did. They are minor areas, but some is better I'll
take it! He also mentioned that my dissection went from the aortic root
to the iliac. Whew! I didn't know that. I thought it was just the arch.
I am going to obtain copies of all my hospital records, including the
doctors surgical reports.
Well, that's it, Looks like I will have to try to remain cautiously
optimistic until my next CT 6 months from now. At least I can have hope
that the difference is size was due to settling after the surgery as
opposed to a continual connective tissue degenerative disease. I sure
hope it isn't CTD!
Guess I was a little wordy, but hopefully informative for those of
you in the same club. Wishing you all continued good health.
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