NARRATIVES
TALK TO A
ADVICE
Established April 15, 1995
University of West Georgia Disclaimer
From early childhood years in the 1950s the family
doctors had detected a heart murmur, and the contention was that it
would go away during teenage years and certainly not adversely
effect an entire future lifetime. My athleticism was experienced in
the sport of fencing throughout all years of high school, at
Rutgers University, and for several years beyond. During child
rearing years, the norm was coaching youth sports to include
basketball (3rd to 6th grade), Little League baseball (TeeBall to
Senior League), football (3 yrs), and soccer (2 yr). From marriage
to the present I have always been active in home improvement and
repair, landscaping, wood burning (tree removal, cutting,
splitting, stacking and handling), and auto service and
restoration. Fitness was never a problem or shortcoming. Smoking
and drugs were never used, and alcohol was consumed seldom at
best.
At age 52 a complete physical concluded that the heart murmur
remained, and an echogram confirmed the aortic valve was
congenitally a bicuspid rather than tricuspid valve. Yet the
medical conclusion was again that no adverse impacts would occur in
my lifetime. In most recent years the engineering career work
environment has become stressful with excessive travel
requirements, major program cancellation, insecure program
redirection and short schedule suspenses. Then came 17 Oct 2002
immediately following five weeks of business trips.
26 December 2002
The Chest Pain Starts
While at the end of a business trip to MN, I headed to
the men's room for relief when suddenly crushing chest pains
started to occur. This was nothing like I ever experienced, and as
I stared into the mirror I concluded this was strange and there
could be a serious problem arising. During departure headed to the
airport, I stopped for a short visit to Twin City Tennis. While
placing goods into the rental vehicle, there was a Community
Medical Center at that same location. Because the crushing chest
pain was sporadic and recurring, I entered and was immediately
checked with EKGs twice and blood tests. The conclusion was likely
not a heart condition, however, nitrostat medication was offered to
relieve pain for the duration of the return trip. Needless to say,
those were used several times on the flight, at Newark airport, at
my office and during the drive to home. The relief is admittedly
only 3 to 5 minutes worth of time. After arriving home late in the
evening, I suspected that if this is not heart problems then
something digestive was wrong, perhaps some stomach pain or a
hiatus hernia.
The Next Day of Pain
I urgently wanted to see my daughter in the Collegiate
Tennis League post-season doubles championship in NJ on Friday and
Saturday. However, the chest pain was becoming more knifelike and
occasionally shot up my neck and into my shoulders. It was
certainly symptomatic of heart attacks, and any digestive problem
should have moved downward into my abdomen. A call to the family
physician in the mid-afternoon resulted in a response to get to the
local hospital immediately! That we did, and I suspected that the
hospital had bigger and better equipment to diagnose, and perhaps
had even more experienced medical staff.
The cardiologist assessed blood tests and EKGs, but also offered morphine, something new to me. It did offer big time relief, and for more time than the nitrostat. The conclusion after several hours was that more frequent morphine and a slight change in the EKG was cause for an emergency transfer to one of the nation's top 100 cardiac hospitals, St. Luke's in Bethlehem, PA. The cardiologist Dr. Patricia Rylko made that decision and concluded that this case was urgent, although there was no real determination of the heart problem.
The Evening of Medivac
The helicopter was immediately available, the weather
was clear and a beautiful helicopter journey of 15 minutes from the
Pocono Mountains to the Lehigh Valley ensued. Upon arrival on the
rooftop, I was rushed down a ramp to a top floor operating room
where I waited for less than a minute to see the last victim being
removed and I was rushed into place. At around 9:30pm I only recall
the mask on my mouth causing the lights to go out immediately and I
was gone. All I knew going in was that a catheter inspection from
my leg to my heart would help determine what was going on inside my
body. I really didn't know much about heart attacks, about
excessive cholesterol and bypass operations, or about other
technical difficulties. If I knew then what I learned later, I
would have been scared to death.
The Surgery
The following is determined from post surgery
findings. The medical doctor in charge of the catheter
investigation was immediately available, and concluded that an
aortic dissection and aortic aneurysm failure was imminent. The
surgeon, Dr. William Risher, was immediately available. Upon
meeting my dear daughter and wife, who had to sign paperwork
authorizing the surgery, they were informed of two statistics. Only
15% of those with such conditions ever survive, and in his surgery
there is only a 50% chance of success. Needless to say, my family
was totally distraught and frightened unimaginably.
The surgery took all night and ended at 6:00 am with success. The surgery included a replacement of the bicuspid aortic valve with a St. Jude's valve. I understand this device will last my lifetime, as well as the replaced section of aorta. No medical person can explain why in most cases the aneurysm will burst but in my case it was a slow leak. As one nurse in the local hospital claimed, there was an angel on my shoulder for the duration. I conclude that the tremendous outpouring of prayers and well wishes represent the angel. These were from my co-workers, neighbors, relatives, daughter's college, friends and the church congregation. I am told post surgery that my heart is now in better condition than it ever has been, and this includes the increased flow rate to the extent of 66% flow rate (most average people supposedly experience 50%).
The Post Surgery
The first week in the hospital recovery was the most
severe I've ever experienced. The first few nights were constant
interruptions for all kinds of excuses: measure my weight, take the
blood pressure, take blood samples, take temperature etc. As I
walked around the nearby hospital neighbors, each day increasing
the distance walked, I found people who had bypass surgery, pig
valve replacement surgery or heart attack surgery. There was then
and ever since, nobody with my condition and I have to believe the
statistics of survivors really being rare.
I recall feeling terribly weak in my legs, my arms and my shoulders. The most excessive pain was leaning forward when the 2 abdominal drain tubes were in place. It was truly agonizing. A thick pad was tied to my chest but that was not only to cover the 2 drain tubes but also the large scar in the center of my sternum, the full length. They must have used some kind of glue because there were no stitches. A young intern visited to discuss my case, because "it was so unusual", and he actually purchased one of my daughter's artworks that were bringing hominess to the bleak hospital room.
When the two abdominal tubes were removed after three days, they also removed wires somewhere attached to my ribcage, supposedly there in the event I needed a pacemaker! I also had yellow iodine legs and black felt tip markings, all there in the event I needed bypass veins. It is all evidence that the medical staff had no clue what to expect, or like good scouts they wanted to be prepared.
The First Three Weeks Home
The home recovery was slow because I will have to
admit I was totally weak. We take for granted how much we use our
arms and shoulders. My morning showers with shampooing my hair, my
electric shaving and my tooth brushing followed by dressing and
climbing down the stairs of our center hall colonial home, resulted
in me sitting at the dining table in complete exhaustion. I had
virtually no energy to even eat a meal. I did have a low-grade
fever that was cured with an antibiotic, and we'll never know the
real cause because all the healing scars were not infected so it
must be internal. I hoped that they removed all the surgical tools
from inside me, like we sometimes don't do when working in
automotive engine compartments. I hate when that happens.
The first week I took one early afternoon nap, and awoke with knifelike pains in my left shoulder that frequently traveled up my neck and gave me sharp pains in my left ear. The pain medication took care of that, and the surgeon concluded it was not the heart operation but rather muscle pulls. The second week in mid-night movement, it felt like I was stabbed in the lower right back. Once again, another muscle pull. The third week I was in my basement that felt excessively damp and found the dehumidifier full, so I did what I always do, empty it. Oh boy, as I lifted the 2 gal container out and up, my lower left back felt like a knife stabbing. That took at least 3 days to heal with pain medication. The best medication was darvocet, but with the addictive potential I transitioned to varieties of Tylenol. The Tylenol PM was best for night use to get sleep, but in these first three weeks, there never was a complete night's sleep.
Each week a morning and afternoon walk around the neighborhood was increased in distance, from 10 to 15 to 20 minutes in duration. Also during the first three weeks there was a visit to the surgeon each week. The first visit was the first time I heard his explanation of the surgery and it was a general check up. The second was removal of the vacuum bulb and tubing from my right leg thigh, draining excessive fluids from the incision that was used in two ways: the catheter inspection, and the mechanical heart operating during the surgery on my heart. The third visit was to get a CTscan of my body to serve as a baseline in future comparative analysis. The visiting home nurses did health checks and took weekly blood samples for testing the coumadin blood thinner levels. During this period we increased the level of blood thinner and decreased the level of lopressor to lower blood pressure.
The Cardiac Rehab
The program to regain physical strength is a
structured exercise program at the local Pocono hospital. The
standard length is 36 sessions at three a week for 12 weeks. The
exercises include: treadmill, bike, free weights, arm pedaling,
wall rope pull, stair stepper, and the boat row device. Each week
progresses with increasing resistance or intensity. The
neighborhood walks continue, but during the bad weather winter
season are accomplished on an indoor treadmill. I will be the first
to admit that this program is really what has improved my physical
strength. I was able to rake some leaves and push some snow at home
without the pains I would otherwise experience. It is hard to tell
the improvement session to session, but it is clearly evident when
comparing week to week. During this period the requirement to get
blood tests every two weeks continues, and this is only to verify
the correct level of coumadin to thin my blood.
Outcomes and Concerns
There are several outcomes that I have discussed with
my family physician and others, and the following notes include my
observations as well. Pinched Nerves. My right hand still has the
last two fingers plus outer palm always feeling somewhat numb with
pins and needles effects. That will slowly improve and has to do
somehow with the clamping of the ribs during open-heart
surgery.
Night Sweats.
On occasion there are nights with profuse sweating from head to
toes. The surgeon suggested it was metabolism related. I have found
from friends, that the anesthesia takes months to leave the body,
and that is really the root cause.
Sleeplessness.
I only had 4 nights of complete sleep (e.g. 11:00pm to 6:30am)
since the surgery on 18 Oct 02. I still do not have good reasons.
Sometimes the medication helps and sometimes it makes no
difference. One factor is the noisy clicking of the St. Jude's
valve that is something to which I just have difficulty becoming
accustomed.
Appetite and Weight.
The increase has been slow, and maybe early on was cause for weight
loss. Post surgery was 205 lbs, the return home was 195 lbs and the
stable weight during rehab has been 176 lbs.
Lung Capacity.
The inhaler test device after surgery resulted in only 500 on the
scale to 2500. After three weeks home around 1250 was achieved but
during rehab after 3 weeks the level has gone to 2250.
Chest Pain. During the first three weeks post surgery any burp, hiccup, cough, or yawn resulted in excruciating chest pain. The sternum has not yet healed. I couldn't even imagine a sneeze or a barf. After three weeks rehab (six weeks home) there is no fear of a cough, sneeze, etc. I am so fortunate to have avoided colds and stomach viruses.
Rehab Blood Pressure.
Here is one oddity not yet solved satisfactorily. When rehab
exercise progresses, other participants increase their pressures,
while mine decreases. After starting at 140s/80s, mine progresses
to 130s/70s and then 120s/60s. The family physician only exclaims
that this is evidence of a good athlete!(?). No cardiologist
feedback is received yet.
Return to Work.
Because I work for the Army, there is no requirement to have a Dr.
release or permission for return. I would be welcomed immediately
if not sooner. It is fundamentally a decision self-inflicted, but
the message from above is to slow down. It is my intention to
accept a retirement in the near term.
Viewpoints on Life.
Every day is a beautiful day, and every family member is so much
more precious, especially the loving and caring wife of 29
years.
Feedback Requested
As this new experience continues, I would appreciate
any feedback from those who have knowledge or experience in the
following topics.
St. Jude's Valve.
Is this noisy clicking something difficult to accept and become
accustomed to in the near future? Will the valve really last my
lifetime, assuming my goal is 100 yrs to finish all my home
projects and hobbies?
Night Sweat.
Is this really from the anesthesia? Will it dissipate in the near
term?
Pinched Nerves.
Will this outcome dissipate in the near term as well?
Blood Pressure.
Does anyone have any theory on why it would go downward during
physical exercise?
Bicuspid Valve Correlation.
Does anyone know if an original aortic bicuspid valve is a root
cause of either dissection or of an aortic aneurysm? Is it more of
a coincidence?
Update: 02 Jul 2003
It is now halfway through 2003 and my initial report on Christmas week is worthy of an update, particularly since I reported many outcomes and concerns and I requested feedback from our community. My surgery was 18 Oct 2002, and my first report to the website was 26 Dec 2002. I sincerely appreciate all feedback, and surprisingly it was from many on the website, and many just perusing the website. What a wonderful act of kindness to send caring and thorough thoughts to me.
Let me first put into perspective those activities that have occurred. In March 2003 I went to my second echocardiogram with intentions of assessing the St. Jude's valve performance. The flow rates are excellent, of course I have thinner blood and the original bicuspid valve is gone so there is little if any regurgitation. In May 2003 I went to my wonderful surgeon Dr. Risher for a second CTscan in St. Luke's Hospital. We found no additional dissections or abdominal aneurysms and the synthetic Dacron aorta was fully attached, and not leaking. What a wonderful feeling of confidence that my plumbing is in excellent condition. Dr. Risher invited me the following day to his presentation in Scranton, PA where he detailed the future of robotics heart surgery. The potential for non-invasive surgery will be wonderful for future patients, and the group to whom he delivered this was the Mended Hearts Society. If there is one near you, and you have interest in sharing heart surgery concerns and tales, consider joining. It is our hope to start a chapter in the Allentown, PA area.
From my previous concerns and requests of feedback, let me progress through each issue to relate the current results and my new experiences.
Pinched Nerves.
My right hand had the last two fingers plus outer palm always
feeling somewhat numb with pins and needles effects. That did
slowly improve and I can say by the end of 4 months post-surgery
was completely gone. What a relief on that subject.
Night Sweats.
On occasion there were nights with profuse sweating from head to
toes. The surgeon suggested it was metabolism related. I have found
from friends, that the anesthesia takes months to leave the body,
and that is really the root cause. From feedback most responses
agree that anesthesia is the likely culprit. I found that such
conditions were completely gone by the end of Jan 2003, 3 months
post-surgery.
Sleeplessness.
I only had 4 nights of complete sleep (e.g. 11:00pm to 6:30am) from
the surgery until Christmas. One factor was the noisy clicking of
the St. Jude?s valve that is something to which I just had
difficulty becoming accustomed. In Jan 2003 I started using an air
purifier in our bedroom and that has helped enormously. From
feedback, most people estimate that it really takes 1 to 2 years to
really feel the heart valve as only background noise. At the moment
this summer, it is truly noisy in very solitude type circumstances.
The aches and pains of excessive labor tasks (rototilling, digging,
car washing and waxing, tennis etc) are causes for consuming
TylenolPM and that is very successful in achieving a deep sleep
(the Benedryl is supposedly the benefit).
Appetite and Weight.
The increase of appetite was slow after surgery, and maybe early on
was cause for weight loss. Post surgery I was 205 lbs, the return
home was 195 lbs and the stable weight during rehab was 176 lbs.
Now in the following summer I am around 190 lbs., but maybe this is
a comfortable lifestyle. You?ll see why ? read on please.
Lung Capacity.
I am glad to report that I have been playing tennis and still
taking neighborhood walks. It feels better all the time, and I can
admit that gains made are noticeable only monthly. The one thing I
need to work up to is tree cutting, splitting and stacking
firewood. I also need to put the rebuilt V8 engine back into the
Bronco. At least I?ve been able to power wash the house and start
restaining the deck.
Chest Pain.
During the first three weeks post surgery any burp, hiccup, cough,
or yawn resulted in excruciating chest pain. The sternum had not
yet healed. I couldn?t even imagine a sneeze or a barf. After three
weeks rehab (six weeks home) there was no fear of a cough, sneeze,
etc. I am so fortunate to have avoided colds and stomach viruses.
My only chest pain in recent months was my ribs and left arm when
playing tennis the first time in April 2003, for only 20 minutes or
so.
Rehab Blood Pressure.
There was one oddity. When rehab exercise progressed (completed 30
sessions from Nov 2002 to Feb 2003), other participants increased
their pressures, while mine decreased. After starting at 140s/80s,
mine progressed to 130s/70s and then 120s/60s. The family physician
only exclaimed that this is evidence of a good athlete!(?). Towards
the end of sessions in Jan 2003, the variations ended. I am
convinced the readings are not really accurate anyway, and I
surmise that the real values are plus or minus at least a value of
7.
Insurance.
Has anyone had the problems I've had with insurance companies. Mine
is GEHA and I've exceeded what they call catastrophic coverage (out
of pocket maximum = $3500). It has been a real task trying to
follow the claims, the benefits paid and unpaid, and the amounts
owed out-of-pocket! I'm already over $4500. And guess what, the
calendar year claims restart all over with deductibles and
catastrophic coverage on Jan 1st each year. So, have all surgeries
in January! End of year surgeries and illnesses are not
economically efficient.
Return to Work.
I worked for the Army as a civilian engineer. It was my intention
to accept a retirement offer and I did just that on 03-03-03 after
working part time in Jan 2003 and full time in Feb 2003. Life is
different now, but certainly a joyful time as I see my wonderful
family more every day, and I don't have the stresses of business
traveling and a horrific commute from PA to NJ on Rt 80!
Viewpoints on Life.
Every day is wonderful. I am often overwhelmed by the recovery from
such massive surgery, and just being here to help others. This past
Thanksgiving and Christmas, my career retirement, my birthday,
father's day, and my 30th Wedding Anniversary this coming Oct 2003
are so special when there was such a risk of never seeing them
again. We should all thank God for such blessings and appreciate
every day.
Update: 26 December 2006
At age 60 I have long passed the original aortic aneurysm surgery of 17 Oct 2002 at age 56. The purpose of this update is to share the results of my case in 2006, another trying year in post open heart, aneurysm/heart valve surgery.
The Situation Defined
Every year I comply with the requirement for an annual
abdomen/chest CTscan and also an echocardiogram. My wonderful heart
surgeon Dr. William Risher has concluded that once experiencing an
aortic aneurysm, victims commonly have a 25% chance of further
aortic aneurysm. Thus the CTscan assures that the ascending Dacron
aorta section is still intact and my descending aorta is not
developing another aneurysm. The echocardiogram required of my
wonderful local cardiologist Dr. Patricia Rylco assures that blood
flow rates and the St Jude's Valve is in excellent condition. The
annual echocardiogram has been successful every year since my open
heart surgery in 2002, and that is not surprising since the
mechanical St Jude's valve is supposedly able to last longer than
my lifetime. Maybe that's good for anyone in need of repair parts,
because I am an organ donor? As I age I can't help but wonder who'd
ever want mine?
The annual CTscan in Nov 2005 a year ago concluded that there was something suspicious at the location of connections from the Dacron aortic branches attaching to the two coronary arteries. The need was therefore established to pursue a nuclear stress test.
The stress test conducted a year ago in Dec 2005 was performed in the cardiologist's office and it was concluded by examination of the electronic heart muscle tracings that I failed that test too. I was supposed to have shortness of breath and chest pains, but such was NOT the case and it was baffling to me. My cross examinations (so to speak) conclude that perhaps the medications of blood pressure reduction and blood thinner may be masking the true situation. Thus a catheter inspection was scheduled at St Luke's Hospital.
The catheter inspection was performed in Jan 2006 by the cardiologist and was proof positive that there were significant blockages in both right and left coronary arteries, and the connection of the Dacron graft (10mm diameter) to the arteries (5mm diameter) had resulted in scar tissue type blockage, although intact.
Bypass vs. Stent
The debate is now on between the heart surgeon Dr
Risher and the wonderful stent physician Dr Mohammed Salem. On the
one hand Dr Risher suggests that an open heart bypass surgery is
not such a great idea with my Dacron graft situation because
synthetic parts tend to grow into the body and the body bonds so
well to the new parts that it would be very messy and risky. Also,
I personally don't like the idea of "harvesting veins" from my legs
and arms. And then the renowned stent physician has never heard of
coronary stent work being done on patients with the Dacron graft
and it may never have been done. Maybe I'm the first? Could I then
be very special? Will I survive and how do you go through this
procedure awake and watching the monitor as the catheter winds it's
way through my body from my leg? Soooooooo many questions.
The conclusion collectively was to pursue the coronary stent work but because many were required it would take 2 separate sessions in Jan 2006.
Stent Procedures
It was the very next day after the catheter inspection
that the first stent session was performed. The circumstance
included two factors: too many stents needed and a limit of 2 hours
per session. The time limit is required because the dyes used in
tracking the remote catheter tools are very destructive to the
kidneys and should be completely cleared of the blood system prior
to the next session IF you have a large number to be inserted. That
leads to the first lesson learned below. The first session finished
with 6 stents of various lengths in one side coronary artery.
The second stent procedure was conducted in a session 3 weeks later in Jan 2006, but was faster than 2 hrs because only 4 were required in the other coronary artery. Therefore I became the proud owner of 10 coronary stents. Is that a record or what?
My personal observation in the stent procedures was the enormous pain in the numbing process at the insertion point on the leg, with a needle that looked over a half a foot long, and more appropriate for a huge mammal, maybe a horse or elephant? Once the leg was numb I felt absolutely nothing. During the procedure I could sense slight tingling in my chest, but nothing intolerable. Another observation for post-procedures is the enormous difficulty in not moving while recovering in a hospital bed for 6 to 8 hours while your leg is compressed significantly at the point of catheter insertion with a compression tool and a trucking industry sized ratchet strap! The entire point however, is to prevent bleeding to death from a major artery, and allowing time to heal, and in my case the blood thinners for the heart valve don't help. An overdose of blood thickener was used during the procedure just for the healing purpose, but then afterwards overdoses of Coumadin to rethin the blood.
New medications.
With the situation of cholesterol levels and
triglycerides too high a new regimen of medications ensued during
2006. The use of lipitor was superceded during the year to Advicor
(a combination of Lipitor 20mg and niacin 500mg), however the
niacin has an unnerving side effect of "flushing", quite unlike a
toilet. This flushing is a numbing of the jaw and sometimes to the
neck. What I discovered was a nutrition center with a non-flushing
niacin tablet. So with separate Lipitor and non-flushing niacin
there is no longer any side effect.
The other new medication started with Plavix that is intended to prevent blockages in the stents by reducing the "stickiness" of blood platelets. Watch your wallets because we are talking one a day at over $4 each tablet. The generic clopidogrel is less cost but the cost out of pocket depends on your insurance coverage. In recent news coverage the cases of restenosis (blockages reoccurring in the coronary arteries) there are medical conclusions that the Plavix medication should be taken long term and not short term. There are high percentages of restenosis if Plavix is stopped.
Next Step
It now seems prudent, and required by the
cardiologist, that an annual stress test be conducted so for me the
schedule is this next month of Jan 2007. Based on walks around the
neighborhood and local area, I feel confident I will pass with
flying colors. And of course I'm not quite like the elderly
patients who need some chemical to race the heartbeat for
measurements, I'll tackle the treadmill full speed ahead.
Lessons Learned.
a. Urination. In the first stent session I neglected to urinate
prior to the procedure and that had a painful consequence. By the
end of two hours my bladder was literally about to explode. There
is a combination of continuous intravenous injection to help
prevent kidney damage, and dye injection into the blood stream for
tracking the catheter and stent tools, so talk about an overload.
The lesson for anyone planning stent work is to urinate at the last
minute before starting the procedure!
b. Stress Tests. In retrospect, it is a great test to examine heart
performance and I wish I had done that even prior to the aneurysm
situation in 2002. When I just met the heart surgeon this month
after this year's successful 2006 CTscan, I brought up the open
heart surgery of 2002 and whether he was able to determine during
those procedures if there was anything suspicious on the matter of
coronary artery blockages. He reminds me that the open heart
aneurysm and heart valve surgery is extremely time critical. There
was but 20 minutes to spare, no way of knowing, and perhaps it is
most likely that blockages were developing even prior to the
aneurysm. My suggestion to any readers is to just get stress tests
done for your own peace of mind and good health.
c. Medications. Don't hesitate to do your own research on
medications and help yourself in solving the side effect
problems.
If anyone in our aneurysm family has similar experiences to mine, please write and I would be glad to communicate.
© Copyright 2006 Rusty von
Schwedler
All Rights Reserved - Fair Use
acknowledged
