Robert Knutzen MBA - First Guest Speaker
The Unexpected Experiences of a Pituitary Patient
and Patient Advocate.
By
Robert Knutzen, MBA
Chairman/CEO and co-founder
Pituitary Network Association
Most pituitary patients know that none of their symptoms or ailments present themselves in a neat little package. (Unlike a broken nose, which is fairly simple to diagnose, I am told.) We (the pituitary patients) live a lifetime of surprises and un-intended consequences, poorly understood even by the medical community, and often terrifying to the patient. Strangely, there often is very little sympathy from spouses and family , because, after all, we look fairly healthy, can tie our own shoelaces and urinate on our own! If we are looking for sympathy we are in the wrong house!
Aunt Emma’s hammertoe and Uncle Horton’s two missing fingers are SERIOUS, and the Pituitary patient is probably exaggerating, anyway. After all, if it was real wouldn’t the GP have noticed it? Few seem to understand that Pituitary Disorders/Tumors, FIRST attack us emotionally, then sexually, then physically in many and seemingly un-related (idiopathic) ways.
Even with physical complaints, which most physicians are willing to face and recognize; there is little understanding about weight-loss (anorexia), obesity, enlarged heart or high blood pressure and sleep apnea and their common relationship/tie to pituitary/hormonal failure, for instance. And sexual or emotional complaints simply do not belong in polite company and should best be left OUTSIDE the physician’s office, lest he be forced to be rude and insensitive to you for bringing up such indelicate subjects.
In my 53d year I was diagnosed with acromegaly (after at least 15 years of progressive illness). A new, and to me unknown, GP, on my first and only visit, said; "put your hands on my desk . Have you always had large hands?" I said "yes" and the enlightened physician asked the crucial question: "Have they grown in recent years, have you had any rings removed?" Yes and Yes. "Well then, I think I know what is the matter with you but I’ll want you to see an orthopedist and possibly have an MRI. I’ll call now and set it up. " The next day I learned I had acromegaly and probably required surgery. After 15 years of looking for answers and being told I was just getting older, leading a stressful life and 20 other silly explanations, I was diagnosed by a GP in 24 hours? Whoa, this is going too fast. Where do I find some written materials or brochures or books on this? (The reason for the first and last visit to this GP was simply because a team of Pituitary Experts took over my care from then on).
And there was the rub, the infuriating fact; I could learn all I wanted about sun-burn, athlete’s foot and dandruff. Unfortunately nothing had ever been written for patients about the oldest diseases described in the Bible (Goliath with acromegaly) and which now caused a tumor to grow in the very middle of my head. It was suggested I have surgery in a small community hospital near my home outside Los Angeles but now I started asking questions. What experience, outcomes, prognosis? Only shrugged shoulders till I found my way to superb endocrinologists, andrologists and a neurosurgeon in Los Angeles. Every test known to man, 14 colon polyps removed (52 at last count), bone density test, thorough heart examination and "gallons" of blood drawn for tests, followed. A small but crucial episode in my family re-doubled my determination. I was a smoker, had grown overweight and out of shape. My youngest daughter, then 6, one afternoon tugged at my pants leg and said; " Please don’t leave me Daddy, don’t die". And that, as the saying goes, was all it took. All my cigarettes were immediately in the trash bin and I called for a nicotine patch. For reasons best known to God I have never craved a cigarette since! Yes, I am amazed also.
28 weeks of experimental (then) Sandostatin, followed by surgery, "cured me". I now recognize there is no "cure" for pituitary/hormonal disease, however. Cure only means that the "chemical imbalance" has been corrected but other chemical imbalances just as easily take the place of the original culprit. Though I secreted both Prolactin and excessive GH , the surgery corrected that and instead left me hypogonadal. (Short on Male Hormones). Not a pleasant trade-off but far better than the original imbalances. Testosterone replacement has been an immense relief and kept me in "good" shape for 14 years. My carpal tunnel syndrome eased up within 12 hours of surgery, my bone density has returned to normal and my sleep apnea left me. No more kidney stones, but higher cholesterol levels and high blood pressure took its place.
At this time I was determined to learn more about acromegaly and and all the other "attached" complications, disorders and "surprises" which seemed to pop-up from no-where at the strangest times. I urged a few of my fellow patients at Cedars-Sinai Medical Center in Los Angeles and our "Godfather" Dr. Shereen Ezzat, to help us form a little self-help group so we could exchange experiences and knowledge as we were going through various phases of treatment. After about a year, Sandoz Pharmaceuticals (Novartis) "gifted" us with enough money to pay an attorney to incorporate the organization in order to meet the Government and Tax standards required for a non-profit organization. First only wanting to be a contributor to our intended Newsletter, I was soon asked to lead the organization. A broad but very good "mission statement" was adopted and we were on our way. Hundreds and hundreds of patients with various Pituitary disorders and diseases also asked us to provide THEM with information and eventually the Pituitary Network Association evolved.
Very soon I was asked to come to Australia for the start of a Patient organization there and our "pattern of organization " was soon followed in the UK when Pit Pat was started. Not long after I was asked to come to Germany to speak at the start of NETZWERK there. At this writing I am pleased to report that in March 105 different countries registered on our web site. Over One Million Five Hundred Thousand "hits" were registered in March and over 400,000 pages of information have been downloaded so far this year.
I believe our strong desire "to make a difference" and not to try be a so-called "support-group" is what sets us apart from many other patient organizations. Whereas many seem to accept their lot in life and continue to lead "lives of quiet desperation" we long ago embraced the philosophy that the status quo was not acceptable and that current knowledge and dissemination of this knowledge, was, and still is, sub-par and unacceptable in a modern society. Since the mental/emotional issues are so severe and create such havoc in the patient’s and their families live, it became clear to us that proper support groups should ONLY be undertaken under the direction of a highly trained and skilled mental health professional, NOT by patients or others who are desperately looking for help and support themselves. Now, a SELF –HELP group is another issue, and we firmly believe they serve a very vital purpose in helping patients understand what is going on in the research and medical community and that, which applies to their specific illness and to learn where they may perhaps turn for help.
We lament, however, medical systems, throughout the world, where one white lab coat is an easy substitute for another and specialists are somehow "above" the day- to- day battles against unusual diseases such as pituitary tumors/hormonal diseases.. (Pituitary tumors and diseases are NOT rare, there is no support for that notion in Medical literature. Instead they are VERY common, though RARELY diagnosed and even then, poorly understood.)
The definition of a "clinically significant" pituitary adenoma is left wholly up to the individual physicians, and the patient is at the mercy of the race, culture, ethnicity, custom, personal beliefs, etc. of the individual clinician and his/her interpretation or belief of what is significant. Maybe sex is not, maybe mental health is not to be spoken of, maybe weight gain is not, maybe a hairy chin on the upper lip of a female is not uncommon and even "acceptable" in their own culture and background while completely un-acceptable in others. A standard MUST be set, common at least, to a specific culture , country or religion. However, HYPOCRICY in these areas MUST be avoided, the patients mental and physical state is at risk and no cultural or religious differences must be allowed to stand in the way.
I have long since learned that a patient is on his or her own from the start. No explanations are offered, the patient too often is made to feel like a hypochondriac, the medical community has far too little education in this field and therefore rarely refer patients to experts for proper care. We learn about kidneys, the reproductive (plumbing) system, eyes, heart function and a number of others in secondary school and biology classes—however—no attention is paid to the MASTER GLAND of the human body of which Dr. Harvey Cushing, the famous medical pioneer had this to say in 1913
" It is quite probable that the psycho-pathology of everyday life hinges largely upon the effects of the discharge of a ductless gland upon the nervous system:!
So far, no valid challenges to that belief! I have every reason to believe that an " information overload" is causing a breakdown in medical services in all fields. It simply is not possible for one person to discover, assemble, retrieve and use when needed all the myriad medical information and discoveries "raining down" on the Medical and Scientific community on a daily basis. The computer industry therefore must teach physicians that their computers are more than a refined abacus—it is of life and death value for information to the patient community. One day this will dawn on our societal leaders also, as the same must be true in law, engineering, etc. The knowledge is there—but can it be used?
The end goal must be to ensure that centers of pituitary excellence be established throughout the world so that patients with pituitary and hormonal issues will be treated whether medically, surgically or psychologically.
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