Rusty von Schwedler

Rusty von Schwedler – Age 56

 AORTIC DISSECTION, ANEURYSM AND VALVE.
A RARE SURVIVAL

 Author background.   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 impact 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 subsequent child rearing years, the norm was coaching youth sports to include basketball (3^rd to 6^th 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.

 1. 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 hietal hernia.

 2. 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.

 3.  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. 

 4.  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%).   

 5.  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.  

6.  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.

 7.  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.

 8.  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.

 9.  Feedback Requested.   As this new experience continues, I would appreciate any feedback from those who have knowledge or experience in the following topics.

 a.       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?

b.      Night Sweat.    Is this really from the anesthesia?  Will it dissipate in the near term?

c.       Pinched Nerves.   Will this outcome dissipate in the near term as well?

d.      Blood Pressure.   Does anyone have any theory on why it would go downward during physical exercise?

e.       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?   

Rusty von Schwedler Aneurysm and Heart Valve Update 1 July 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 1^st 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 30^th 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.