First Person Account of Med-Psych Illness by Michael Condylis

I recently heard from someone I saw several years ago as a psychiatric consultant at another hospital and he graciously gave me permission to post his letter to me, which is a spectacular example of the reason why it’s so important for doctors and the health care system to keep a both/and approach in mind when it comes to medical and psychiatric illness. He also gave permission to use his name. Michael Condylis had studied for his PhD in Philosophy and, though he didn’t get an opportunity to collect the degree he has continued his studies in both literature and philosophy. But for his long struggle with psychiatric illness, he would probably be teaching at the university level, if he chose. Michael has thought of starting his own blog, and I’m sure you’ll agree that he would probably be successful. He’s planning to write something for publication, perhaps a couple of novels and more. What always comes through in his letters to me is his goal to make a contribution.

As Michael loves to say, he’s “on the tortoise plan” regarding his writing projects. I’m hoping he’ll write something else for us in addition to what he wants to share below. I want to emphasize that Michael is not my “patient” per se and I saw him in my role as a psychiatric consultant when he was hospitalized on a general medical ward. He was delirious and had several medical problems. After he recovered, he was kind enough to participate as the star in a Grand Rounds presentation about his case regarding the interface between medicine and psychiatry, specifically the treatment of prolactinoma in the setting of a chronic episodic affective psychosis, at the University of Iowa Hospitals and Clinics at our expense. It’s rare to have a patient as articulate as Michael interact with learners at many levels from medical student to experienced faculty member in an educational forum. He was an absolute smash hit with everyone. I would hear from Michael occasionally after that, but then lost touch until just recently, for the reasons he describes in his letter. OK so it was an email, but the electronic nature of his communication is the only feature that differs from the traditional letter which people used to sit down and write to each other. You’ll see what I mean. He may be on the “tortoise plan” but he’s a road runner–J. Amos, MD.

Hello, Doctor;

You haven’t heard from me in a while, because, beginning in late Fall of 2007, my health took a turn for the worse. There is much I could tell you, but I want to narrow my focus to the few things I thought might be of particular interest to you.

I became groggy and drowsy all day, never being able to become alert or really wake up. I merely “limped” along in this condition, barely functional, until Fall of 2011, when I became seriously ill. My feet swelled, then my ankles, then my calves, then all of both legs. I became extremely physically weak, and started falling as I tried to walk, even across my own apartment. I fell to the rug and repeatedly scraped my shins with “rug burns”. I fell against the walls, and against objects in my apartment, knocking out nine of my teeth. I could no longer sleep reclined in bed, and would wake suddenly, gasping for air. I took to sleeping sitting upright in a chair, and could only sleep a few hours that way. In December of 2011, I was no longer able to walk to the drug store to fill my prescriptions, and after a month without medication, I was hospitalized in early January of 2012.

As a physician, you probably know that, from a medical perspective, the diagnosis was not difficult. I was diagnosed as suffering congestive heart failure. My legs had become infected from the many injuries to them, and I was also diagnosed as having a staph infection. Upon blood testing, I was discovered to be so low on vitamin D as to count as malnourished. And, of course, as a result of the physical stress and separation from my medication, I was now suffering a psychotic episode.

I required hospitalization from early January all the way to early April. I was first treated in a medical ward of a local hospital — Provena Medical Center — then moved from the medical ward to their locked psychiatric ward. From there I was sent off to a nursing home in Peoria, where I was kept for a month and a half before being released.

Very much happened during this time, but I wish to relate only a few key specifics relevant to what might interest you. I am now under the care of a cardiologist, and preliminary testing has been done. He has established that my heart’s “ejection fraction” is down to 27%. He stressed that I could not possibly have gotten this badly off all of a sudden — that I must have suffered congestive heart failure for some long time, slowly degenerating, and only this accounted for my being functional at all, and minimally being able to live on my own.

I have always described the depression I suffer as characterized by “fatigue”, and not low mood — not, for instance, “despairing” or “despondent” — but definitely leading to low functioning. When I was released from the nursing home, I said to my current prescribing psychiatrist that, “The congestive heart failure felt just like what I’ve been calling ‘depression as fatigue’, only worse.” And he agreed, both that my depression and congestive heart failure are largely one and the same, and that I have likely suffered congestive heart failure for a very long time.

I can trace the very same fatigue at least back to my late teens. I suffered a very serious bout of mono just before my senior year of high school, and, . . . well, . . . never recovered. I was out from school for a month, and returned not because I felt any stronger or better, but just because I couldn’t remain in bed forever. So I got up and went back to school, but didn’t feel any better at all. I never felt better. A year later, I was first prescribed low-dose Stelazine for panic attacks — hyperventilation and heart palpitations. And in my early twenties, I knew I was in very big trouble, for I was extremely fatigued, and my life was collapsed, and no one seemed to have any help for me. Suggestions and advice ranged from “talking to a counselor”, to total lack of empathy, jeers of “laziness”, “get a grip”, and so forth. I was all alone in the world and stranded, and I knew it, and any suggestion of any physical cause, aid, or even understanding, was very far away. Even in graduate school, at an Ivy League university, my peers couldn’t understand what it was to have “low energy”. They didn’t understand what I could possibly mean by that. They could only think it was a mental illness, and I needed psychotherapy to cure me of my idea that I had “low energy”. It was my idea that was the mental illness, and not even the low energy! In their conceptual framework, what I reported simply couldn’t be. They expected me to come out of psychotherapy not feeling any better, but now cured of calling it “low energy”.

And I’ve simply been forced to struggle to make the best of it ever since.

I have read more than once that the trajectory of those with mental illnesses similar to mine often includes mono in late teens followed by the onset of the illness in their twenties, and that so far this is a notable correlation, but the causation is not readily understood. But I can say that I was never an energetic youth — that I huffed and puffed trying to ride a bicycle even as a pre-teen, and that my energy levels were collapsing during my junior year of high school. That is, I can say that I was simply always this way — born this way — and my health only getting worse since.

I have had periods of higher functioning, and lower functioning, lasting many years at a time. But I have simply always struggled with fatigue.

So with the diagnosis of congestive heart failure, much of my life is making more sense, at least in retrospect. Not at all that a diagnosis of congestive heart failure could replace that of bipolar disorder. No, I certainly do suffer bipolar disorder. But I’m thinking now that the bipolar disorder should be understood as embedded in the overall problem with congestive heart failure, and that it is the congestive heart failure that is the more fundamental. Congestive heart failure has meant oxygen deprivation to my body, meaning oxygen deprivation to my brain, which must be able to cause any number of mental problems.

I do wonder that the congestive heart failure wasn’t detected earlier — that I had to be wheeled into an emergency room with the congestive heart failure in full “bloom” before the diagnosis was made, suggested, or even hinted at. It’s not as if I hadn’t spoken up to both psychiatrists and physicians about being fatigued, and short of breath, and excessively sweating. But I had not even been prescribed blood pressure medication until just a few years ago. Is it that congestive heart failure is supposed to be something thirty-year-old’s don’t suffer, only fifty-year-old’s do?

And that is why I wanted to bring this up. There is much current research and discussion of problems with fatigue, now included under the larger umbrella term of “chronic fatigue syndrome”, as a cluster of symptoms both physical and psychological. And I wonder just how much fatigue and depression has congestive heart failure as an unsuspected cause, an underlying cause that is eroding physical and mental health without loudly announcing its existence.

So I just wanted to add my input as to the presence of congestive heart failure behind the depression. Let me then be one statistic entering into the mix, and duly registered, to perhaps add to the good that can be done for future generations in avoiding how I have suffered. The “mysterious” illness is over, and it’s identity is now known — congestive heart failure — or at least it is in my case.

Both of my parents died decades ago, and my mother’s cause of death is listed as “aldosteronism”, and my father’s cause of death is listed as “Parkinson’s”. However, death certificates also include a “proximate” cause of death — what it was, in the half hour or so before death, that immediately led to death — and the proximate cause of death for both my parents is listed as congestive heart failure. Knowing my parents as I do, congestive heart failure was a permanent part of both their lives, as it has been of mine, and not something that suddenly arose at the moment of death.

Also, I’d like to add that perhaps the psychological effects of vitamin D deficiency do not deserve the low priority they are currently given. Any research on the effects of insufficient vitamin D will readily turn up glaring information as to bone health. But it takes some long and careful research to even find mention that lack of vitamin D does also have negative effects on mental health. Ever since my release from the nursing home, I have been prescribed a thousand units of vitamin D a day, with calcium for absorption, and it has been this, and not my psychoactive medications or heart medications, that has made the biggest impact on the improvement of my mental status and mental health. In my experience, vitamin D is not just a “footnote” to mental health, and is not just an “also ran” in the mix of brain chemistry.

So I write only to add my input that perhaps congestive heart failure, and vitamin D, deserve a larger place in the pantheon of psychological theory than they currently possess.

The treatment of my brain tumor — such a matter of excitement when you and I first met — has largely been abandoned. It turns out I was unable to tolerate even the lowest doses of the bromocriptine. Surgery has been ruled out, not because it is impossible, but for reasons of law. There’s no protocol established for it, and doctors aren’t allowed to just start making up surgeries as they go along, even if it is really is obvious how such a surgery would go. Even the biopsy was “daring”, as legal standards go. Treatment by radiation has been ruled out, when the radiology department reported that they did not possess the accuracy to target the tumor without a fifty percent chance of causing blindness in my left eye. And this has left us with no options at all, but to monitor the progression of the tumor with occasional MRI’s. The endocrinologist treating the tumor put in the effort to research such an odd and unusual tumor, and determined that the tumor must have been with me since before birth, since I was a fetus — meaning that it is growing very, very slowly, and is likely to continue to. Blood tests show that the tumor is not producing a huge overabundance of prolactin, as was feared and might be expected, but instead a relatively minor surplus. I was warned I might have fifty thousand times too much, when it turns out I have fifty percent too much. The endocrinologist speculates that, when I was still a fetus, and in early development, and the cluster of cells that was to become my pituitary first tore away from the rest of the growing brain, it did not tear away cleanly, but left a substantial portion of itself behind — a portion that did not die out, but continued to grow where it was, and that is my tumor as it exists today. He explains that, at this time, the greatest threat from the tumor is its physical size. Tests on my vision show that there are slight effects of double vision that can be detected, and it is possible the tumor may some day grow large enough to put enough pressure on the optic nerves to cause partial blindness. But at this time, I have no actual loss of vision, or loss of visual field.

Is is interesting that knowledge tends to move the opposite direction of information. Research and investigation is like archeology, starting at the superficial layers, and moving down to uncover the deeper causes. My congestive heart failure has been the last to be discovered, but should have been the first, and is probably the largest and most basic cause of my health troubles, and if it had been discovered earlier, I might have had a very different life.

And this, after all, is the purpose of study — that perhaps “next time”, we can guess at the real causes first.

Thanks for listening, and I’ll be glad to hear back from you if you care to write!

Michael Condylis

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