NARRATIVES
TALK TO A
ADVICE
Established April 15, 1995
University of West Georgia Disclaimer
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 Aortic Dissection Story)
(Robert's Identity Theft Story)
10 February 2006
The Mental Part
We all have read about aortic aneurysms. Some of us
have been most fortunate to have had great diagnosticians and
skilled surgeons, and so we are still walking around this world
after suffering aneurysms or dissections. There is quite a lot on
this web site about the surgeries, the different medications, and
there are excellent referrals to sites on which you can learn about
where best work is done.
What we read almost nothing about are the mental issues that arise after an aneurysm is diagnosed and repaired. On-going work has shown that a surprisingly large number of people who are involved with a major medical catastrophe (which certainly defines an aortic dissection or aneurysm) end up with post traumatic stress disorder. How they, and the people who support them, handle this is key to how well they recover and go on to lead normal lives.
I know, because I've been through it, and am still enmeshed in it.
What Does PTSD Look Like?
It is different for each person. It was first
recognized in soldiers, and called "shell shock" (World War I) or
"battle fatigue" (World War II). A well known military history
notes "battle fatigue was a term used by troops but considered
suspicious by medics and brass hats", but subsequent to the Korean
War it came to be recognized as a real condition. The web sites set
up by the Veterans Administration and others will tell you that the
general symptoms are any of the following:
1. Re-living the event through recurring nightmares or other intrusive images that occur at any time. People who suffer from PTSD also have extreme emotional or physical reactions such as chills, heart palpitations or panic when faced with reminders of the event.
2. Avoiding reminders of the event, including places, people, thoughts or other activities associated with the trauma. PTSD sufferers may feel emotionally detached, withdraw from friends and family, and lose interest in everyday activities.
3. Being on guard or being hyper-aroused at all times, including feeling irritability or sudden anger, having difficulty sleeping or concentrating, or being overly alert or easily startled. And naturally all this stuff gets in the way of resuming a normal life. Curiously, or not, the medical community has been slower than one would like in recognizing that the stresses of major medical events cause the same effects in patients, and that those effects, left untreated, can get in the way of recovery.
My Story
My story, posted February 2004, on our Aneurysm and
AVM Support site is "Kathy, Call the Paramedics". I was 57 when my
ascending aorta dissected. I had grown up in the great Western
American tradition of believing that you are self-sufficient; when
I was a kid Dwight Eisenhower was in the White House and John Wayne
on the movie screen. When someone was revealed as having gone to a
psychologist or psychiatrist, the comment around our dining room
table was "they must be crazy". We were taught that men controlled
and contained their emotions, managed their pain, and that they
never cried no matter what. It was the 50's view of the male role.
To seek help was an admission of weakness.
Then my aorta came apart in January of 2003. I can still clearly see and hear my surgeon, John Stoneburner, standing in my hospital room in scrubs and tennis shoes at seven in the evening, looking terribly fatigued (he'd been operating all day, I was later to find out), telling me that I was dying. He drew a picture of my aorta on the bed sheet with a pen, and said to me quietly but firmly, "You have to have this surgery right now or you're going to die, and you have a 20% chance of dying in surgery".
After I got out of the hospital and was sufficiently recovered that I could be taken places by my wife, my family doctor referred me to a psychologist whose specialty is working with people who had had cardiac bypass surgery. This man managed to convince me that much of what I was going through physically was the normal recovery process for someone who had had their chest taken apart and all their internal organs re-arranged. (The only instructions I had gotten from my doctors were, "walk your dogs, and don't lift anything heavy"). He also pointed out that some of the fears I had, of the repair being less than perfect, for example, were also normal.
I have also had what I think is the normal number of encounters with medical personnel who simply don't get it. At my first CT scan after surgery (about four months later, done as an outpatient) the technician didn't understand what she was seeing, freaked out, and tried to admit me to the hospital for immediate surgery. At the second CT scan, a different technician said to me, "I can't believe you're still walking around!" At one of the follow-up MRAs, the facility misread the orders and did a complete body MRA; when I asked why, the technician said casually, "Your doctors must think your dissection is progressing down your legs". And when we went for a review of the surgery with the head of thoracic surgery at a major university, he looked at everything, pronounced the repair deficient, and told my wife and I that I should prepare for a second surgery in a matter of weeks (fortunately, he was wrong; as my surgeon said later, "he's a very bright guy, but even bright guys make mistakes"; but his comments prompted a flurry of tests over about three months and a great deal of emotional stress).
When I went to church, during the services I found frequently myself on the verge of tears. This was the first sign that not only had my aorta been affected by my experience, but my mind. I began to have really horrific dreams; sometimes I was in an emergency room, and I knew what was happening, but I couldn't get anyone to pay attention to me.
When I returned to work, I had a position that required me to sit for six months or so doing routine work while I was processed into another program, and in that time I had moments to look at the literature about my condition on the web. And again, in those moments, I often found myself close to tears.
Though most of my professional career was in commercial aerospace electronics, I had been involved with state-side projects with the Navy and Air Force, and with Government projects overseas. I lost friends in Vietnam and more friends overseas later. In a flight home from Bangkok, my aircraft had come under fire from antiaircraft missile batteries in Cambodia. I was in Seoul when the US went to war in the Persian Gulf in 1991 and I had to make my way home through what basically was an armed camp. I worked in Beijing for about half a year, with all the security issues that entailed. I worked in Hong Kong just before the British handed it over to the Chinese. I worked in Jakarta in the early years of this decade. I landed in Brisbane, Australia on the day of the Bali bombing that killed so many Aussies. And I can very clearly remember looking out the window of my office, which then overlooked Los Angeles International Airport, on September 11th and the days following, seeing only fighter planes and the occasional military transport landing and taking off.
Sometimes I have had very vivid dreams of being attacked. Some of these dreams involve situations that I've been in, some situations that my subconscious literally dreams up. I've also had at least one dissociative experience, where I lost track of where I was and what I was doing while a very real dream played out, like a movie. I also find myself withdrawn from people at times; I think that this is simply my mind's way of sorting out the pictures that come up out of the mental muck, but also there is a point where the very last thing you need is any more advice from folks who don't have the same experience that you have had.
Then there is the "White Coat Hypertension" that I developed. White Coat Hypertension describes the situation where your measured blood pressure is much higher in the doctor's office than at home. If you have enough nurses and doctor's assistants yelling at you about your blood pressure, I think this is the inevitable result. No less an expert than Dr. Thomas Pickering, director of the Hypertension Center at Cornell, estimates that over 40% of patients develop this condition. And it causes some people to avoid the doctor's office!
Another aspect of this is what a dear friend of mine who has survived breast cancer calls "cancer brain". It works like this. You have some physical symptom, which, prior to this event wouldn't even have caused you to think about it. However, your mind takes the symptom and turns it into an impending catastrophe. Let me give you a recent personal example. My descending aorta is dissected, and some of the organs on the right side of my body are fed from the false lumen. It is a very real possibility that something will change within the aorta, curtailing blood flow to part of the right side of my body; this would be a major medical emergency, requiring immediate surgery. One night a few weeks ago I awakened with a strong ache in my lower right leg (which apparently was due to a sprain I suffered walking my dogs). I lay there for quite some time trying to decide whether what I had was a sprain (which would require, say, Advil), or whether it was something having to do with my dissection. When I got up to look for some Advil, I found myself checking my circulation by looking to see that both my feet were still the same color.
Coping
Before my retirement I sought out and worked with a
psychologist who understands PTSD. My otherwise excellent medical
insurance would only pay for part of her time, so I paid for the
rest out of my pocket. What I got out of the experience, along with
specific ways to deal with stress (meditation, for example) is that
what I am going through is a normal reaction to an incredibly
terrible stress, and that I have to face it, and deal with it.
One of the things I do now for tests like spiral CTs and MRAs is to insist that I am given a copy of the orders that the physician wrote, and to make sure that the technicians have been specifically briefed on what condition I have and what they are expected to see. When I was in Los Angeles, I asked that whatever radiologist who was on duty when the tests were run do this, to prevent more emotional stress.
I learned (from the psychologist) to deal with White Coat Hypertension simply by taking my blood pressure twice a day, and keeping a record of the results. I use one of the automated measuring instruments, and the whole process takes about ten minutes a day. The initial readings were something like 150/80, but they quickly declined to 130/70, and now the readings I see are below 120/55 (all this with no change in medication). When I go to the doctor's offices now, I take a print-out of the most recent month's readings with me, and the nurse or assistant now calmly says, "oh, white coat hypertension", and doesn't scream, "oh my God, your blood pressure's way too high!"
If I have an unusual medical symptom, I see to it that I am quickly checked out by the appropriate medical professional. Here's a recent example. I have suffered from several different kinds of ophthalmic migraines since my "adventure". Mine usually show up as the glowing jagged lines that float around in my vision, and generally go away in about fifteen minutes. But I have also had the translucent cloud variety, which take as much as 45 minutes to dissipate. In December, I had what I initially though was one of the translucent cloud ophthalmic migraines, but it didn't go away, and the next morning I called my family physician's office, who told me to come in. When I got there, I found that they weren't equipped to deal with it, so I asked them to refer me to a local ophthalmologist (we're new in this town, having moved here a few months before). As I walked out of their offices, I called back over my shoulder, "tell them I'll be there in twenty minutes". The ophthalmologist took me as an emergency, gave me a thorough exam, and found that I had a "really large floater", which he said happens to "older people" (he's about 40, and time will get even with him!), and told me it would go away in a week or two, which it has.
So why is this response important? The PTSD that kicks in when you get a medical symptom gives you a great deal of energy; you can use that to wind yourself up in a knot, or you can focus the energy and use it to defuse your situation. That is what I have tried to do.
I am aware that some physicians prescribe antidepressants such as Zoloft for PTSD. I've not used an antidepressant, and none of the physicians or psychologists with whom I've worked even have suggested it, so I guess I don't have whatever symptom presentation leads them prescribe it.
As I have thought about it, I have begun to think of the appearance of PTSD symptoms as a cumulative process. An analogy would be the response of a hay fever sufferer to the presence of allergens. You may be allergic to cat dander, pollen, and house dust, but exposed to any one of those you may not have any allergic response. Exposed to several, you get a massive response. I think in my case, the stress of managing the illness combined with the other stresses in my life triggered the response I am seeing.
I didn't have the incredible resentment at what happened to me that I see in some people, nor did I have the "I know more than my doctors so I won't take my medicines" issue. In that I am extremely fortunate; I'm also fortunate in that I have physicians with whom I can talk. I saw many of these people in cardiac rehab, and recently ran into an old friend who has developed the same issue. These reactions, while normal, are damaging, and get in the way of getting better.
The Message
I wrote my story to try to be helpful to other people
who might have similar responses, and not understand what is going
on. I think the message is four things:
1. Going through an aortic aneurysm surgery is
an incredible mental stress, as well as a physical stress, and that
can affect how you subsequently deal with life.
2. Changes in your mental outlook and emotional well-being as a
result of this stress are normal.
3. If you choose, you can get help.
4. Life always throws something at you that you don't expect. How
you react to that and deal with it basically defines your
character.
Oh, and by the way, your husband/wife/significant other may have many of exactly the same issues, because he/she was there, too. Pay attention to him/her.
Discussion, comments, or questions: Robert Parker
© Copyright 2006 Robert Parker
All Rights Reserved - Fair Use
acknowledged
