Established April 15, 1995
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Dr. Robert Parker & wife Kathleen
Robert Parker is a 58 year old electronics engineer who has spent his entire career working in aerospace, first for Hughes Aircraft Company, and subsequently for Boeing. A graduate of Caltech and USC, Dr. Parker also teaches spacecraft design in the graduate school at USC. He had emergency surgery for a dissecting aneurysm of his ascending aorta on January 28th, 2003, at Little Company of Mary Hospital in Torrance California. He lives with his wife Kathleen, two Golden Retrievers, two cats, and an African Grey parrot in Palos Verdes, California. He has returned to work full time, and he and his wife are looking forward to an active retirement.
(Robert's Identity Theft Story)
(Robert's Post Trauma Stress Disorder Essay)
13 February 2004
It has been exactly a year today, 27 January 2004, since I was sitting in the office of Terry Hammer, my Family Practitioner, and was startled out of my mind when he looked at my EKG, turned to his nurse, and barked, "Kathy call the Paramedics!"
I have had a very healthy life. My weight has always been under control; I visit the gym regularly working with a trainer, and run with my dogs; and while I have had elevated cholesterol I was careful to consult with my physicians to get it under control using niacin, and to have yearly physicals, the results of which, as they say in medicine, were unremarkable. My only previous experience with hospitals and surgery was the repair of an inguinal hernia when I was 12.
In January of last year, I came down with something that initially both I and my doctor thought was the flu. However, it hung on longer than the flu was supposed to, and my significant other, Kathleen, thought I looked more fatigued than at any time she could remember. The last weekend of the month, I began to experience an irregular heartbeat. Looking in my 25 year old American Medical Association family home health guide, I found something called Holiday Heart, which was supposed to happen to middle aged people under a large amount of stress, which could occur around the holidays (thus Holiday Heart). The symptom was that my resting heart rate, about 65, went suddenly to 165, for about 30 seconds, and then back to normal. This happened several times a day.
That following Monday, the 27th of January, I had lunch with an old friend and former Hughes colleague in Manhattan Beach, and found myself out of breath climbing the slight hill to the restaurant, which was odd, given the hours I log at the gym. After lunch, I called my family doctor, and arranged an appointment that afternoon. In his office, the condition reoccurred. He took one look at my EKG, turned to his nurse and told her to call the paramedics. In rushed half a dozen firemen and paramedics, and I was taken literally across the street from his office to Little Company of Mary Hospital in Torrance, California.
After an evening in the emergency room, the night in a cardiac monitor unit, and most of the next day of tests, the initially puzzled doctors (by this time I had several working on me) ran the echocardiogram that detected the type A dissecting aneurysm (of the ascending aorta). It was about 7 in the evening on Tuesday the 28th when the surgeon (whom I'd never met before) accompanied by my family doctor and a cardiologist (who I'd met only once), came into my room, summarized his findings, and said quietly but firmly "You have to have this surgery right now or you're going to die." I called Kathleen to tell her; she dropped the evening English as a Second Language class she was teaching and rushed to the hospital. We both listened to the surgeon, who explained that not only did I have to have immediate surgery, I had a 10-20% chance of dying during the operation, which he described as being "the biggest surgery you can have except for a heart-lung transplant." I asked him how many of these he did in a year, and he said "about five"; when I asked, why so few, he replied succinctly, "Most people who have what you have arrive here dead."
We asked for a few minutes; the surgeon went off to assemble his team. We looked at each other, called a minister who came immediately to the hospital room, and, as Kathleen says, "Put our hearts in each other's hands as the anesthesiology team paced outside the door."
The surgery lasted seven and a half hours. The surgeon, John Stoneburner, and his team replaced my entire ascending aorta (the part between the heart and the aortic arch) with a Dacron graft, repaired the aortic valve and the pulmonary artery, glued as much of the rest of aorta back together as he could reach, and re-assembled me.
I was in the hospital 10 days, the first four in intensive care; went through 13 weeks of cardiac rehabilitation; and was out of work for four months, returning part time the first week in June, full time in July. Kathleen took leave from her teaching position the winter quarter to take care of me at home.
Recovery has been hard work, but things are going well. I'm working full time, and am back at the gym four days a week. I've gained back most of the weight I lost in the hospital and post surgery, and have gotten back most of the muscle tone. It has been a long hard road back, and a year later I have begun to feel almost as good as I did before the condition occurred.
I've had no serious complications, apparently very rare with this surgery. I keep having journeys through the medical community for tests and opinions, and have emerged mostly unharmed. I have a slightly damaged right kidney, the damage probably having occurred before the surgery when the blood flow was slowed by the dissection; but the last tests showed the blood flow was improving. My descending aorta is also dissected, from the aortic arch all the way down to where it splits to go down the legs, but the dissection is, for now, non aneurismal and stable.
There is a continuing discussion about whether I should have another surgery, to repair the rest of the currently stable descending aorta; my local physicians are divided on the issue, but I'm also consulting with the Chairman of the Department of Cardiothoracic Surgery at USC and other specialists (but I'm not particularly excited about having another surgery of this magnitude).
Currently, I am on a mixed drug blood pressure medicine regimen, a beta blocker to keep the heart from pounding too much, and an ACE inhibitor (the dissecting descending aorta is usually managed with blood pressure medications). I also take digoxin. Because my cardiologist believes that my condition was caused by cardiovascular disease, I am on a relatively high dose of Pravachol, a statin drug.
Compared to my pre-surgery condition, I find that I have:
Frequent dizzy spells (which could be a side
effect of the either the blood pressure medication or the
statin).
Rashes and excessive skin dryness, particularly on my back (a known
statin side effect).
Cold hands and feet (probably a side effect of the blood pressure
medication).
Occasional coordination and diction problems (possibly a statin
side effect)
Occasional bleeding into the urinary tract and bowel (a reported
statin side effect), and an increase in floaters in both
eyes.
Periodic numbness and tingling in my hands and feet (peripheral
neuropathy).
Because of the side effects, and with information gained by corresponding with the UCSD study on statins (noted below), I am now taking Co-enzyme Q10, and find it has definitely decreased the side effects, especially the coordination and diction issues.
The only physical limitation that I have is that lifting heavy objects is completely forbidden, as is carrying heavy objects any distance. Heavy, in this case, is probably about 40 pounds for lifting and 25 pounds for carrying. The reason for this limitation is to avoid a blood pressure spike. For reading on this topic, look at Kenneth Cooper's book, called "Overcoming Hypertension". It's an excellent, clear ten year old work that is available in paperback now.
I also eat a low sodium, low fat diet, and track both my diet and exercise using a software program for the Palm Pilot; I discovered it after doing a little Internet research. It's called "Balance Log" and it tracks calorie consumption, sodium, fat, carbohydrates and protein, and exercise output. I have found it very useful and recommend it highly.
The University of California at San Diego is conducting, in its medical school, a study of the side effects of the most common cholesterol-lowering drugs, the statins. After reading what they were doing, I elected to become a part of the study and contribute data from my experiences, both to help others and to try to understand the side effects I personally was experiencing. Information on this study, funded by the National Institute of Health, can be found by sending an email to the principal researcher, Beatrice A. Golomb, at statinstudy@ucsd.edu . An interview with Dr. Golomb can be found at the Colorado Health Site (do a search for: Golomb).
A relatively new technology that my doctors are employing in monitoring me is what they have been calling the "16 slice CT scan". This is a higher resolution scanner that generates a computer tape or CD ROM, rather than the conventional sheet of film with a whole legion of little bitty images on it. A properly trained radiologist can take advantage of the computer driven aerospace technology, and generate a higher resolution three dimensional image of the aorta which he can then turn, and inspect from all angles. My physicians have used it to rule out an apparent defect in the repair as it appeared on conventional CT scans; the apparent defect turned out to be bioglue, used in the surgery to repair the aorta.
A difficult thing with which we have been dealing is that aortic aneurysms seem to fall right between specialties:
The cardiologist worries about the heart, but
this isn't about the heart, except peripherally.
The vascular surgeon mostly is concerned with the arteries that
provide blood flow to the heart (e.g., bypass surgery), not the
aorta.
The urologist, or other specialist, worries about the part of the
body that is his specialty.
The Family Practitioner is supposed to do oversight of and coordination among the specialists, and I am extremely fortunate to have an energetic, knowledgeable, and dedicated Family Practioner who does exactly that. Still, occasionally I find that the patient has to do some of this work himself.
One crystal clear example of this is that my otherwise excellent medical insurance initially refused to pay for post-surgical cardiac rehabilitation; "your surgery didn't involve your heart", they said. I got them to pay for it by pointing out that Dr. Stoneburner had had to resuspend the leaflets on my aortic valve, thus involving the heart, but had he not had to do that, I wouldn't have had insurance coverage for rehabilitation. For much the same reason, you will find many many books about cardiac bypass surgery, cardiac rehabilitation and recovery, but not one on aortic aneurysms and recovery from them.
The initial reason we consulted the Chairman of the Cardiothoracic Surgery Department at USC was to try to understand why this happened to someone who was much younger than the average aneurysm patient and had none of the apparent risk factors-not overweight, not diabetic, no family history; and, while I was in the hospital I was extensively tested for all the more common causes, for example Marfan's syndrome and all the tests came back negative. The USC professor's comment about the cause was "borderline high blood pressure and bad luck"; the surgeon who performed the operation guesses that it was a congenital weakness (which might be the medical equivalent of bad luck); and as noted above the cardiologist thinks it was cardiovascular disease. So, I've also been working with a psychologist who is a specialist in biofeedback, to be able to better control the blood pressure.
But taking all that into account, life is really wonderful. Dr. Rachel Remen has written, "The view from the edge of life is different and often much clearer than most of us see things". My journey to the edge and back has given me a whole new perspective. Each day, I get up early and watch the dawn break with my two Golden Retrievers as my wife sleeps. I am the luckiest guy in the world, to be able to watch each dawn come up. The last night I was in the hospital, the Spanish nurse I had said, "It just wasn't your time; God has something else in mind for you". And each morning, I give thanks to Him for the extra time and pray that I will use it wisely.
Update: 5 June 2004
It's been the better part of half a year since I wrote the original post. Recall I had an emergency repair of a Type A aneurysm a little more than a year and a half ago, which left me with a Dacron graft in my ascending aorta and a dissected descending aorta.
In the early part of the year, the doctors noticed a little blood in my urine; an extensive workup came up entirely negative for any sort of cancer or other problem. My Family Practitioner tells me that it is his opinion that the blood was the result of the dissected descending aorta, but as noted previously a possible side effect of the statin drugs is bleeding into the urinary tract,
In the later part of April, my Family Practioner convened a group of specialists, including a radiologist expert in the interpretation of 16-slice (or high resolution) CT scans, the surgeon who performed the original surgery and his partner, and the cardiologist who has been following my case. The purpose of the meeting was to examine all the (five) different CT scans to determine if anything was changing and what to watch or do next.
When all the scans were examined, this group reached the conclusion that the diameter (the radiologist uses the word "caliber") of the remaining aorta, both the aortic arch and the descending aorta, was unchanged over time, and was essentially the normal diameter, and the dissection is stable. They also reported that the right half of my body below the rib cage is fed from the true lumen of the aorta, and the left half is fed from the false lumen. So, we will have to watch for the dissection changing with time, either going further, or closing up to interrupt the blood supply to the left side. The way my Family Practioner put it was, "if you notice one of your legs turning blue, I'd like to know about it". Don't you just love medicine??
My surgeon concluded that we would switch to MRAs (magneto-resonance angiograms), rather than use CT scans, to both eliminate the radiation exposure and also the exposure to the iodine based dye used in CT scans, to which it is possible to develop allergic reactions over time. He told the group that he did not need any more high resolution scans to continue to monitor me.
Following this, I have just been through the first comprehensive physical exam in two years, "to fill in the blanks" around the data already collected as part of all the follow up testing after surgery. My cardiologist changed me from Pravachol to Lipitor for cholesterol, and I am now taking a time-release beta blocker which seems to have greatly reduced the dizzy spells I was having before.
On a entirely non-medical front, I traded a condo that I had owned for a number of years in the ski resort of Mammoth Lakes, California for a newer home in Galena Forest, between Reno, Nevada, and the North Shore of Lake Tahoe. I also retired from the Boeing Company at the end of May, and am planning to consult in the aerospace field locally in Southern California until Kathleen and I are ready to move to Nevada and try to figure out what we want to be when we grow up. (By the way, the selection of the Reno area was not simply happenstance: we very carefully looked at the quality of the medical care available there, and the proximity and ease of access to major medical centers like UC Davis and Stanford, before we made the choice of the location. You have to be lucky and smart).
Still, getting up every morning to watch the sun rise with my dogs is a very special treasure, for which I give thanks every day.
Update: 30 January 2005
It has now been two years since surgery, and things are going well. Since the last update, I have had an MRA in August to check on the aorta, and an echocardiogram in September to check on the repair of the valve. Both show that my situation is stable; the aorta is still non-aneurismal, and the valve, thank God, still works. I'm on an exam schedule of MRAs every six months to check the aorta, and echocardiograms every year to check the valve. The surgeon who replaced my ascending aorta reads the radiologists' report of the MRAs, and the cardiologist reads the echocardiograms. I've also returned to my normal physical exam schedule.
As I've continued to walk the dogs regularly, and work with a trainer to build muscle tone, I find myself getting strong enough that I could violate some of the physical constraints that I have, for example, I think I could now easily lift something that is heavier than I am allowed to lift. Before, during the time it took to recover, this wasn't a problem at all, but now... So managing this new capability is another challenge in outliving my family doctor, which I have promised him I will do.
One of the things with which I was struggling was how to deal with the many excellent physicians who had helped me survive this illness. Finally, my Family Practitioner agreed to be the focal point to manage my medications and coordinate my examinations. He switched me to a timed-release beta-blocker, Toprol XL, which has virtually eliminated the dizzy spells that I was having after physical exercise when I was taking atenolol.
I found that I had what cardiologists call "white coat syndrome" — my blood pressure measurement was always high in the doctor's office, and I came to really dread the visits. For their part, some of the people who were taking it didn't help matters any, by remarking with alarm about how high it was. However, the wonderful psychologist with whom I've been working on biofeedback for blood pressure control talked me into taking my blood pressure twice a day and keeping track of it. I use one of the automatic blood pressure machines. Taking it this often has eliminated much anxiety, and it turns out that the real numbers are something like 125/65, rather than 140/70 or 150/80. And when I walk into the doctor's office with my daily printout in my hand, the technicians just say, "Oh, white coat syndrome", rather than "Oh my God you have to get your blood pressure down, have you been taking your medications!!" This, of itself, is great news.
On the non-medical side, my wife Kat and I took our very first overseas vacation to Australia in July. I had been there many times on business, but she had never been; we both had a wonderful time in Sydney and Canberra, seeing old friends.
After I retired from Boeing this past May, I took an assignment at what used to be TRW (now Northrop Grumman Space Technology) working on NASA programs. I imagine I will stay there until we decide to move to Northern Nevada for "retirement".
And I still treasure the sunrises with my golden retrievers, every single day.
Update: 18 November 2005
It's time for another update, still positive.
My regular MRA and echocardiogram in Torrance in September were "unremarkable"; they showed no change from the previous ones, which indicates that the aorta is stable and the aortic valve still works as intended. In the meeting to review the results with John Stoneburner, my surgeon, I asked about how these repairs hold up over time. He indicated that, yes, something could go "wrong". We need to watch the valve because, even though it was "re-suspended", it might begin to work poorly, and because my descending aorta dissected from the arch down through the abdomen it bears watching to be sure that another aneurysm does not develop.
So, with that data in hand, my wife Kathleen and I packed up our home and all our pets and moved from Southern California to a home we bought in the mountains of Northern Nevada between Reno and the North Shore of Lake Tahoe. The process of moving a residence, and especially the process of finding new physicians to monitor my condition, has been somewhat of a challenge.
Fortunately, I started out with a recommendation from the retired chaplain of the major local hospital, Washoe Medical Center; he checked his contacts, and gave me the name of a surgeon who, his contacts said, understood the surgery and had trained in it. When I called the surgeon's office for an appointment, the staff was a little perplexed that my referral had come from a minister, but went ahead and scheduled me.
By roughly the same process I found a cardiologist (to watch the valve), and from him I found a cardiac surgeon who actually does about one ascending dissecting aneurysm repair a month. The cardiologist spent about an hour with me, going through all my records, and, having listened carefully to my heart, he remarked that the repair of the valve must have been very good, because he didn't even hear a murmur. The surgeon quickly read the operative report from Dr. Stoneburner and commented that he would have done exactly the same repair. Both invited me back in a year for follow-ups.
We've also found a family doctor, via referral from one of the surgeons, and a dentist, via a referral from our family dentist in Redondo Beach. Given all that I suppose the best news is that I had no trouble making an appointment with a highly regarded veterinarian, who agreed immediately to see my two Golden Retrievers, and my wife's two cats.
It's slower here, even given the hysteria surrounding the move process. The weather is very different. The sky is wonderful, changing every day. On the property we have coveys of quail, rabbits, little rabbit-like creatures called pikas, all manner of songbirds, great horned owls and golden eagles, deer, and the occasional coyote (and presumably a black bear, since the Forest Service left a bear trap parked up the street). What the slowness has done for me is that my measured blood pressure is down from 125/70 to about 115/60.
Bear and Sierra (the Goldens) and I still get up every morning and watch the dawn, and give thanks that we can do it together.
Update: 20 August 2006
Well, we survived the record rainfall at Christmas, and the long, cold, snowy spring, and have now lived here in the mountains between Reno and Lake Tahoe for almost a year. My health has remained very good, and I find that I am doing more and more in the yard in the spring and summer, and of course blowing snow in the winter, than I dreamed I would be able to do.
Then, this late summer, it was time for the yearly round of tests and exams: the MRA and review with a vascular surgeon to check on the aorta, its caliber, and the structure of the remaining dissection; and the echo and review with a cardiologist to check on the repair of the aortic valve.
I thought I had this all figured out, but medicine can surprise a person. While I had heard of chronic descending dissecting aneurysms (called DeBakey type III, or Stanford type B), I was not aware that one could have a chronic ascending dissecting aneurysm. In my meeting with Dr. Joe Brandl, my new vascular surgeon here in Reno, to review the current MRA, just such a surprise occurred.
First, he told me that everything was unchanged from last year, and I should keep doing whatever it was that I had been doing, and we talked about medications and schedule of future testing; that was the good news that my wife and I had been waiting to hear. But then, he began to talk with me about the symptoms that I had had prior to the surgery. He clearly had read the whole file that I had given him, including the reports I normally write after any meeting with a physician. (My situation was unusual, in that I did not have the excruciating pain reported by most dissection patients. And I had been feeling poorly for several weeks prior to my noticing an odd heartbeat, which led to the visit to my doctor, which led, almost two days later, to surgery.)
Then he asked me the question that really threw me: "Was this an elective surgery? Um, not exactly; I can still see, in my mind, my surgeon John Stoneburner standing in my hospital room at seven o'clock in the evening, saying to me, as the anesthesia team waited in the corridor, If you don't have this surgery right now you're going to die".
So, as we talked about it, he told me that in his experience about 95-98% of ascending dissections were acute; he said that in these cases, if surgery is not performed within 24 hours the patient normally does not survive. But, 3-5% of the dissections are chronic, meaning that the patient lives with them for some period of months before the damage causes physical symptoms. He felt this would explain why I had no pain in the period immediately preceding the surgery.
It probably also explains why I survived for more than 36 hours after admission to the hospital with symptoms, before everyone figured out what was going on, and I had surgery. It also possibly explains why the physicians working on me were so puzzled and took so long to diagnose what they were looking at was very non-normal, even for a completely non-normal condition: consider that only a small fraction of dissections are ascending, and if only about 5% of those are chronic, it is likely that none of the people in the emergency room, and none of the other physicians (save possibly the cardiologist, who insisted on the final test that provided the data that allowed the diagnosis) had ever seen one of these.
But, here's the kicker. He told me, "You probably had this for several months, possibly as many as six months, before surgery." During the period immediately prior to the surgery, I was managing satellite marketing campaigns in Asia for Hughes and Boeing. In that period, I flew to Singapore and back once and to Australia and back hree times, possibly with this dissection slowly progressing in my chest the entire time. Dr. Brandl, after reviewing all this, said, "You are a very lucky man" I think I already knew that. My wife agreed.
This morning, as is my custom, I was up before dawn to sit and watch the sunrise with my Golden Retrievers, and to thank God for the opportunity to do it.
Update: 6 October 2009
In April of this year, an optometrist ran a visual field test, noticed a defect, and announced that he thought I might have a brain tumor. After many tests, many doctor's appointments, and a neurological consultation in Los Angeles, everyone now agrees on what happened.
During the lengthy emergency surgery in 2003 to repair an ascending aortic dissection, a few blood clots got loose, and lodged in the brain, causing stroke-like damage (this happens sometimes even with the much shorter cardiac bypass, or CABG, surgery). There are three such areas of damage. They are all minor, but the largest one is in an area called a "silent area", meaning that even a major stroke in that place would not cause noticeable symptoms.
One of the other two is the cause of the very slight visual field degradation in the lower left quadrant in both eyes. This is so slight that only very recent modern test equipment can pick it up, and I do not notice it.
The other is in a place that causes a slight and occasional speech impediment, so slight that only I and my wife normally notice it. It is most noticeable when the I am tired, or under a great deal of stress.
There are no new changes, meaning that all this occurred in 2003, and is stable and expected to remain stable.
It was pointed out on several occasions that I am the luckiest guy in the world, because all the damage is in "very fortuitous areas", to quote my favorite physician in Los Angeles. For example, if the damage that slightly affects vision had been a millimeter or so lower in the brain, the I would have permanently lost all vision on the left side.
So, as my old primary care physician says, you have to be smart and lucky, both. Or to quote the little Spanish nurse I had on the last night in the hospital in February 2003, "It wasn't your time. God has something else in mind for you".
And life goes on.
Discussion, comments, or questions: Dr. Robert D. Parker
© Copyright 2004 Robert Parker
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