- Email: [email protected]
Benefits from artificial nutritional support: a testimonial
NURSES COLUMN
Editor: Leocadia Varella, RN, MSN, CNSN, ANP
Benefits From Artificial Nutritional Support: A Testimonial Maria Eugenia Mansilla From Lima, Peru n this column, I share my experience as a “patient;” carrier of neoplasia type APUD cells and other illnesses; the effects in my lifestyle and project; the loss of consciousness due to an infection of golden Staphylococcus and the acuteness of the occasional difficulties in intellectual activities; the impact of parenteral nutrition; my becoming an “impatient”; and improving my quality of life and intellectual functions. I am an “impatient”/patient of the Edgardo Rebagliati National Hospital of EsSalud, Lima, Peru, and a carrier of a neoplasia of APUD cells, VIPOMA type, that currently is not operable. Since March 1998 I have been going to the Unit of Nutritional Support (USNA) because of malnutrition. My physician, Mario Ferreyra, MD, invited me to present my experience with artificial nutrition support at the first annual congress in Lima during July and August 2001. Sister Lee Varella asked me to share that testimony in Nutrition. My insistence and persistence in writing this essay is my way of thanking the doctors and nurses who have improved my quality of life.
I
MY LIFE AS A PATIENT My medical history dates to the summer of 1984, when I had many perspiration attacks (diaphoresis) over the right side of my body, accompanied by chills, changes in skin color, and liquid excretions and vomiting that wore me down and decreased my body weight by 2 or 3 kg within a few days. Drinking one glass of water sometimes was enough to activate these disorders. At the same time, the chronic inflammation of my fingers, muscular and bone pains, cramps and tendonitis increased, forcing me to slow down my social and working activities. By December 1984, my ability to walk decreased, I could speak only with great effort, and I slept an average of 18 h/d. I was hospitalized December 23. All the tests and analyses carried out during the month I was hospitalized were negative. When I was allowed to leave, I was told I did not have cancer but did have a bizarre but unidentified disorder of the central nervous system and that it would be better to treat these disorders each time they occurred. When I went home in February 1985, I “clinically rested” for several months,
which did not allow me to work on a fixed schedule. In March I started researching from my bed and could stand for short periods; I relied on the support of a secretary, two very close research assistants, and a field work team within and outside of Lima. I had occasional memory difficulties; for instance, one day I was told my son’s name but I did not remember it. At that time I organized the Research Center ADOC (a non-governmental organization), which started its official activities in March 1986 under my direction. From then on, the disorders would present at any moment and for no reason. By 1988, in addition to the great pain in my muscles and bones, I could not use my hand to write (fine motor skill) and my right leg was not functioning fully. Once again, the analyses were negative but I underwent physical rehabilitation until 1990. One doctor thought I had Munchausen syndrome. I noticed that whenever these disorders occurred I also had difficulty in recovering information, especially theory, which I needed in my professional activities, so I consulted some colleagues who, according to the results of the evaluation, found me emotionally stable with a flawless, albeit selective, memory. In 1991, I underwent a radical hysterectomy due to an “in situ cancer.” In 1993, I was told I had a “sensitive peripheral polyneuropathy.” In 1995, the pains returned with great intensity, and the rheumatologist prescribed codeine because I am allergic to non-steroidal anti-inflammatory drugs, which I suspended at the beginning of 1997 because of possible side effects. In 1996, I had three falls, the last of which was at the platform of the Tacna Airport, which left a “fissure” in the tibia close to my ankle. My leg was in a cast for 1 mo, and I was given calcium, which I stopped taking because it activated my gastrointestinal disorders. By 1997, I had adjusted and learned to recognize the changes in my body, by switching from a balanced diet to a liquid diet when the disorder was strong and then to soft food, semisoft food, and then normal food, reaching 51 kg of weight. I lectured at the Graduate School of the Faculty of Psychology at the Universidad Nacional Mayor de San Marcos and at the Department of Psychology at the Pontificia Universidad Cato´lica del Peru; I led the ADOC center; I
Nutrition 19:78 – 80, 2003 ©Elsevier Science Inc., 2003. Printed in the United States. All rights reserved.
trained professionals; did research and wrote articles, a new book, and academic reports; I performed consultations and advising for my major, and I traveled; I traveled a lot. In other words, I lived within a familial, social, and professional environment that fully pleased me. On July 30, 1997 I traveled to Mexico City, and the next day the usual health disorders came up, which for the first time included strong dizziness, which I relate to the physical condition of the city, the lack of proper food, and the physical demands. I completed all my engagements including giving my speech and quietly participating in a research workshop. When I returned to Lima, I had lost 2 kg (I weighed 49 kg), and I had lost control of my body! In November 1998, I weighed only 39 kg. I always felt tired, without physical balance, and I lived with a sensation of vagueness alien to my experience of life. For example, in November, while driving from my office to my house, I had to park on a main avenue by which I always went because, although I knew where I was going and where I was, I felt I was lost, which was absurd. Sometimes when I gave lectures I could not remember the author’s name or a very well-known theoretical piece of information. I stopped the research I was doing, which was at the analysis stage, because I could not recognize the technique I had used in the design of the investigation, which I had taught and designed many times; nor could I synthesize what I had investigated. I requested a neuropsychological examination, which showed normal intellectual functioning according to my antecedents with a selective memory. In December, I fell asleep at the computer and while reading books, and my social and personal lives were null. As in 1984, I could not keep up with the rhythm of my life. My doctor, Susana Tara, MD, an endocrinologist who has followed my case since 1993, requested the dosage of “gastrine” and “VIP,” produced positive results, so I stayed in the hospital.
MY HOSPITALIZATIONS In December 1997, at the end of the academic year, I went to the National Hospital Edgardo Rebagliatti Martins of EsSalud, 0899-9007/03/$30.00 PII S0899-9007(02)00824-9
Nutrition Volume 19, Number 1, 2003 and so began my journey as a patient in the endocrinology department due to an “APUD cell type of neoplasia.” I also started my journal of a trip that has not ended. In February 1998, I returned to the hospital because my fluid excretions could reach up to 9 L a day and the diaphoresis was permanent; as a result, I was seriously dehydrated and undernourished. In March, the USNA initiated treatment with a nasogastric tube but that did not stop the fluid loss, so they placed a central tunneled catheter to provide nutrition without my digestive system intervening, but I got sick from “golden Staphylococcus,” which caused a “septic encephalopathy” (conscience disorders due to infection). When I recovered my senses, the catheter had been removed; the worst thing was that I did not remember what had happened that month. I left the hospital with a diagnosis of a “neoplasia APUD, VIPOMA type cells” and a treatment of subcutaneous injections of octreotide every 8 h, which I have administered since April 14, with variations in dosages. In July 1998, I returned to the hospital to get another catheter placed, which I used for a year. My weight increased to 58 kg, the weight I have kept, on average, since then. While in the hospital, I developed a hiccough, which continues to this day. At the end of that year, the first symptoms of hepatitis C appeared. In 1999, I was in the hospital six times, two of which I perceived as very significant. In June, at the end of a liver biopsy procedure, I had a “serotonin discharge” that caused a “breathing stroke” for which I was admitted to the Unit of Shock Trauma, and remained in the hospital for the treatment of an infection of Staphylococcus aureus. In December I was in the hospital for treatment of atypical pneumonia and released on December 31 to wait for the year 2000 at home.
BECOMING AN “IMPATIENT” In 2000, I stopped being a patient and conscientiously became an “impatient.” I resolved to and was able to stay out of the hospital with permanent control of various specialties and the support of venous artificial nutrition. The hiccough had caused me to go to the emergency department twice, so in July I requested magnetic resonance imaging of my neck, which visualized a pseudotumor pressing against the phrenic nerve and some ganglions. I learned how to avoid hiccoughing when I was awake by avoiding turning or lowering my neck and keeping my shoulders down. However, I cannot avoid it when I yawn, laugh, sneeze, or sleep, moments when I worry others. In 2001, I was examined in the Rheumatology Section of the Guillermo Almenara
Benefits From Artificial Nutrition Support Hospital EsSalud. While there, my physicians consulted the Gastroenterology Section about my hepatitis C and a second biopsy was performed. Fifteen days later, I was told that I had a “diffuse pathology of the connective tissues” since then have been treated with ␥-interferon. Perhaps next year I will be able to start a rheumatologic treatment. At the beginning of March, I began therapy with ␥-interferon; in June, rivabirina was added to my therapy but was suspended after 1 mo because my hemoglobin decreased from 14 to 8. On November 24, I was told that my hemoglobin was 10.8, so I am improving. I still undergo continuous and diverse medical controls, with venous parenteral nutrition combined with a limited diet consisting entirely of cooked food with no fat or fiber except for the occasion fruit or vegetable. I take high doses of octreotide and ␥-interferon three times a week, with minimal doses of other medicines and pain killers.
LIVING WITH ARTIFICIAL PARENTERAL NUTRITION In my case, living with parenteral nutrition means using a nutrition bag to live and have a better quality of life, which compensates for the loss of dining on good food with family and friends. When I practiced the cleaning and administration of the nutrition bag procedures in the hospital, which included the handling of syringes, I felt the lack of an adequate use of my hands, especially my deformed fingers caused by the rheumatic disorders. Sometimes, I was flooded with feelings of powerlessness that led me to tears, e.g., when the intravenous stand and the infusion pump fell on my back because of my clumsiness. It seemed that I was not going to be able to learn the essentials to actively participate in my own recovery. But I learned how to handle the infusion pump, a positive reinforcement, which is easier than using a computer. When I left the hospital, I was told that the nutrition support should start at 7:00 AM and would last 14 h. Although my recovery was not as fast as I had expected, I did observe the impact of the treatment on my weight gain, the blood that runs through my veins, the color of my skin, the keloid scar on my bladder (from surgery in 1976), the decrease of discomforts in general, and the increase of my physical strength, although I cannot maintain a high level of energy and my “erosive chronic ciastritis” (due to medicines) became gastritis. The venous artificial nutrition also made positive changes in my health, although it is tedious and somewhat painful (every 8 to 10 h/d, three times a week), which has modified my daily activities, but I keep my weight.
79
A year later, with renewed strength I started to adapt a mini apartment to my needs (handlebars in the bathroom, a room with wide-view windows, and space to move around with the intravenous stand to and from the bed, the desk, the dining room, etc.). I also developed postponed interests such as pot gardening. I can watch television and videos and see programs that teach and amuse me: movies, history programs, archaeology, scientific advances, and social dynamics. In addition, I have the energy to keep up with my checkups and treatments and avoid going back to the hospital. One benefit that has come from heaven is the possibility of reading and I take full advantage of it. Another is the opportunity to share my life with my grandson, which would not have been possible if I had been healthy enough to maintain my previous, heavy workload. To face the disorders, pain, and treatments with optimism, I use relaxation and visualization before and during each medical procedure. I also have the support of my family and friends, which brings me happiness and keeps me in touch with the outside world.
RECOVERY OF INTELLECTUAL ABILITIES When I was conscious again in April 1998, after the septic encephalopathy, I could not remember what had happened during those days. I had only flashes in which my son or the doctors, who asked unintelligible questions, appeared; moments of relief that ice baths produced; the terrible headache that made me impatiently scream for an ice bag; and the marvelous hug from nurse Margot that calmed the intense cold and anguish resulting from fever. But everything seemed to happen in 1 d and the moment in which the intense headache flooded my life, drowned it, and dominated it. When I returned home, I painfully realized that, although my language skills and social competence had not been affected, I could not fluently handle abstract concepts so necessary for my intellectual work. Nevertheless, because I had learned to inject the octreotide and administer parenteral nutrition, it seemed possible to recover intellectually. From then on I focused on intuitive management (pre-existing but nonconscious knowledge) to create the conditions to recall, by going over my philosophy of life and my concepts on life and death, health, and illness; subduing my impatience, which annoys me (the most difficult); keeping my energies to activate “my interior child”; maintaining a positive of life; and intensely living each moment and each day with happiness. On this road of life I look for solutions to problems as they come up; I move forward
80
Mansilla
step by step by accomplishing small goals; and I continue learning new things, even though I am saddened by skills apparently lost. For example, I learned how to knit a shawl for a friend’s baby and other handcrafts that I presented as gifts during Christmas 1998. After 1 mo of parenteral nutrition support at home, I was able to approach the computer: at first, half an hour of playing (I still do) like a child, although with the inhibition of an adult; I exercised with series of numbers in card games by trying to remember them as I relearned to play the games. It worked. Currently I play White Card with scores that go from 55% the day I receive interferon to 85% in my best moments. My grandson and I have been exploring chess, which I taught my son when he was 4 y old, too. At some point, I decided to read complex texts, without critique or analysis. Although I did not remember everything I read and did not read at the same speed, I continued experimenting with my intellectual capacity by playing with the ideas and the notes I had taken during my stays at the hospital and coming up with small verses that my friend Claudia told me were mots d’esprit. Here is a poem I wrote in August 1998 about my relationship with the infusion pump: MY SATELLITE (THE INFUSION PUMP) I have a marvelous satellite That has a crazy clock With a penetrating tic tac Working 14 hours I know that tic tac is the possibility of life, but sometimes, When it interrupts the wonderful silence of the night
Nutrition Volume 19, Number 1, 2003 Or when it doesn’t let the wakening of the day be heard, I would like to shut it off and fire it But my satellite is finishing its turn And will let me live Ten beautiful hours with freedom And strength to explore life In September 1998 I remembered a dream from the forgotten month. I saw myself dying from a fever caused by the septic encephalopathy, and my mother (who died in 1993) stood close to my bed telling me I would live. That day I wrote the first draft of this dream– or was it a vision? I do not know, but it does not matter; what does matter is that it was the retrieval of my lost memory and the beginning of more complex activities, such as copying and correcting some of my academic drafts, until the day I started producing new texts without realizing it. A year after using parenteral nutrition support, I published an article in the psychology journal of the Universidad Nacional Mayor de San Marcos and started to teach a course on the “Psychological Problems of Human Development.” At the end of 1999 I published another article in Anales de Salud Mental (Annals of Mental Health) of the Institute of Mental Health D/IN. In 2000 I published two more articles. In May 2001, I was asked to evaluate a social project. In the final report presented in July (my month of anemia), I included a proposal for the organization and functional design of the project, which allowed me to develop a formative, educational, and alternative approach based on work done in the 1990s. This evaluation was a stimulus for me to remember enough of the Excell program so as to direct my assistants’ work. By the end of the year, I planned to go back to
the explorative research on creativity that I was forced to abandon in December 1997, when I was to have analyzed the data from the survey I had applied to 200 high school students. If this does not happen, I will take it up again next year.
FURTHER INFORMATION I feel that my physical recovery has been possible thanks to parenteral nutrition. Furthermore, I am convinced that, if this artificial nutrition support is suspended without surgery for the neoplasia, my physical condition will return to the state that forced me to go to the hospital in December 1997. I believe that it was the excellent therapy that allowed a person with my physical condition to recover. The multidisciplinary team at the USNA was composed of excellent professionals who took excellent care of me. In addition to the firmness of my physicians, the support of my family has been decisive in my recovery, as has the presence of friends who would visit me even when I rejected them. I believe my recovery from the sequelae of the septic encephalopathy was due to the nutrition support, the theoretic approach I have developed in prevention and advertising programs, and the experience and knowledge that I activated at the “intuitive” level. Because side effects from these treatments are appearing and I have not had surgery, my endocrinologist, Dr. Tara, is arranging for me to go abroad to locate and excise the neoplasia. Meanwhile, thanks to artificial nutrition, I continue to live intensively, i.e., sharing life and creating.
Editor: Leocadia Varella, RN, MSN, CNSN, ANP
Benefits From Artificial Nutritional Support: A Testimonial Maria Eugenia Mansilla From Lima, Peru n this column, I share my experience as a “patient;” carrier of neoplasia type APUD cells and other illnesses; the effects in my lifestyle and project; the loss of consciousness due to an infection of golden Staphylococcus and the acuteness of the occasional difficulties in intellectual activities; the impact of parenteral nutrition; my becoming an “impatient”; and improving my quality of life and intellectual functions. I am an “impatient”/patient of the Edgardo Rebagliati National Hospital of EsSalud, Lima, Peru, and a carrier of a neoplasia of APUD cells, VIPOMA type, that currently is not operable. Since March 1998 I have been going to the Unit of Nutritional Support (USNA) because of malnutrition. My physician, Mario Ferreyra, MD, invited me to present my experience with artificial nutrition support at the first annual congress in Lima during July and August 2001. Sister Lee Varella asked me to share that testimony in Nutrition. My insistence and persistence in writing this essay is my way of thanking the doctors and nurses who have improved my quality of life.
I
MY LIFE AS A PATIENT My medical history dates to the summer of 1984, when I had many perspiration attacks (diaphoresis) over the right side of my body, accompanied by chills, changes in skin color, and liquid excretions and vomiting that wore me down and decreased my body weight by 2 or 3 kg within a few days. Drinking one glass of water sometimes was enough to activate these disorders. At the same time, the chronic inflammation of my fingers, muscular and bone pains, cramps and tendonitis increased, forcing me to slow down my social and working activities. By December 1984, my ability to walk decreased, I could speak only with great effort, and I slept an average of 18 h/d. I was hospitalized December 23. All the tests and analyses carried out during the month I was hospitalized were negative. When I was allowed to leave, I was told I did not have cancer but did have a bizarre but unidentified disorder of the central nervous system and that it would be better to treat these disorders each time they occurred. When I went home in February 1985, I “clinically rested” for several months,
which did not allow me to work on a fixed schedule. In March I started researching from my bed and could stand for short periods; I relied on the support of a secretary, two very close research assistants, and a field work team within and outside of Lima. I had occasional memory difficulties; for instance, one day I was told my son’s name but I did not remember it. At that time I organized the Research Center ADOC (a non-governmental organization), which started its official activities in March 1986 under my direction. From then on, the disorders would present at any moment and for no reason. By 1988, in addition to the great pain in my muscles and bones, I could not use my hand to write (fine motor skill) and my right leg was not functioning fully. Once again, the analyses were negative but I underwent physical rehabilitation until 1990. One doctor thought I had Munchausen syndrome. I noticed that whenever these disorders occurred I also had difficulty in recovering information, especially theory, which I needed in my professional activities, so I consulted some colleagues who, according to the results of the evaluation, found me emotionally stable with a flawless, albeit selective, memory. In 1991, I underwent a radical hysterectomy due to an “in situ cancer.” In 1993, I was told I had a “sensitive peripheral polyneuropathy.” In 1995, the pains returned with great intensity, and the rheumatologist prescribed codeine because I am allergic to non-steroidal anti-inflammatory drugs, which I suspended at the beginning of 1997 because of possible side effects. In 1996, I had three falls, the last of which was at the platform of the Tacna Airport, which left a “fissure” in the tibia close to my ankle. My leg was in a cast for 1 mo, and I was given calcium, which I stopped taking because it activated my gastrointestinal disorders. By 1997, I had adjusted and learned to recognize the changes in my body, by switching from a balanced diet to a liquid diet when the disorder was strong and then to soft food, semisoft food, and then normal food, reaching 51 kg of weight. I lectured at the Graduate School of the Faculty of Psychology at the Universidad Nacional Mayor de San Marcos and at the Department of Psychology at the Pontificia Universidad Cato´lica del Peru; I led the ADOC center; I
Nutrition 19:78 – 80, 2003 ©Elsevier Science Inc., 2003. Printed in the United States. All rights reserved.
trained professionals; did research and wrote articles, a new book, and academic reports; I performed consultations and advising for my major, and I traveled; I traveled a lot. In other words, I lived within a familial, social, and professional environment that fully pleased me. On July 30, 1997 I traveled to Mexico City, and the next day the usual health disorders came up, which for the first time included strong dizziness, which I relate to the physical condition of the city, the lack of proper food, and the physical demands. I completed all my engagements including giving my speech and quietly participating in a research workshop. When I returned to Lima, I had lost 2 kg (I weighed 49 kg), and I had lost control of my body! In November 1998, I weighed only 39 kg. I always felt tired, without physical balance, and I lived with a sensation of vagueness alien to my experience of life. For example, in November, while driving from my office to my house, I had to park on a main avenue by which I always went because, although I knew where I was going and where I was, I felt I was lost, which was absurd. Sometimes when I gave lectures I could not remember the author’s name or a very well-known theoretical piece of information. I stopped the research I was doing, which was at the analysis stage, because I could not recognize the technique I had used in the design of the investigation, which I had taught and designed many times; nor could I synthesize what I had investigated. I requested a neuropsychological examination, which showed normal intellectual functioning according to my antecedents with a selective memory. In December, I fell asleep at the computer and while reading books, and my social and personal lives were null. As in 1984, I could not keep up with the rhythm of my life. My doctor, Susana Tara, MD, an endocrinologist who has followed my case since 1993, requested the dosage of “gastrine” and “VIP,” produced positive results, so I stayed in the hospital.
MY HOSPITALIZATIONS In December 1997, at the end of the academic year, I went to the National Hospital Edgardo Rebagliatti Martins of EsSalud, 0899-9007/03/$30.00 PII S0899-9007(02)00824-9
Nutrition Volume 19, Number 1, 2003 and so began my journey as a patient in the endocrinology department due to an “APUD cell type of neoplasia.” I also started my journal of a trip that has not ended. In February 1998, I returned to the hospital because my fluid excretions could reach up to 9 L a day and the diaphoresis was permanent; as a result, I was seriously dehydrated and undernourished. In March, the USNA initiated treatment with a nasogastric tube but that did not stop the fluid loss, so they placed a central tunneled catheter to provide nutrition without my digestive system intervening, but I got sick from “golden Staphylococcus,” which caused a “septic encephalopathy” (conscience disorders due to infection). When I recovered my senses, the catheter had been removed; the worst thing was that I did not remember what had happened that month. I left the hospital with a diagnosis of a “neoplasia APUD, VIPOMA type cells” and a treatment of subcutaneous injections of octreotide every 8 h, which I have administered since April 14, with variations in dosages. In July 1998, I returned to the hospital to get another catheter placed, which I used for a year. My weight increased to 58 kg, the weight I have kept, on average, since then. While in the hospital, I developed a hiccough, which continues to this day. At the end of that year, the first symptoms of hepatitis C appeared. In 1999, I was in the hospital six times, two of which I perceived as very significant. In June, at the end of a liver biopsy procedure, I had a “serotonin discharge” that caused a “breathing stroke” for which I was admitted to the Unit of Shock Trauma, and remained in the hospital for the treatment of an infection of Staphylococcus aureus. In December I was in the hospital for treatment of atypical pneumonia and released on December 31 to wait for the year 2000 at home.
BECOMING AN “IMPATIENT” In 2000, I stopped being a patient and conscientiously became an “impatient.” I resolved to and was able to stay out of the hospital with permanent control of various specialties and the support of venous artificial nutrition. The hiccough had caused me to go to the emergency department twice, so in July I requested magnetic resonance imaging of my neck, which visualized a pseudotumor pressing against the phrenic nerve and some ganglions. I learned how to avoid hiccoughing when I was awake by avoiding turning or lowering my neck and keeping my shoulders down. However, I cannot avoid it when I yawn, laugh, sneeze, or sleep, moments when I worry others. In 2001, I was examined in the Rheumatology Section of the Guillermo Almenara
Benefits From Artificial Nutrition Support Hospital EsSalud. While there, my physicians consulted the Gastroenterology Section about my hepatitis C and a second biopsy was performed. Fifteen days later, I was told that I had a “diffuse pathology of the connective tissues” since then have been treated with ␥-interferon. Perhaps next year I will be able to start a rheumatologic treatment. At the beginning of March, I began therapy with ␥-interferon; in June, rivabirina was added to my therapy but was suspended after 1 mo because my hemoglobin decreased from 14 to 8. On November 24, I was told that my hemoglobin was 10.8, so I am improving. I still undergo continuous and diverse medical controls, with venous parenteral nutrition combined with a limited diet consisting entirely of cooked food with no fat or fiber except for the occasion fruit or vegetable. I take high doses of octreotide and ␥-interferon three times a week, with minimal doses of other medicines and pain killers.
LIVING WITH ARTIFICIAL PARENTERAL NUTRITION In my case, living with parenteral nutrition means using a nutrition bag to live and have a better quality of life, which compensates for the loss of dining on good food with family and friends. When I practiced the cleaning and administration of the nutrition bag procedures in the hospital, which included the handling of syringes, I felt the lack of an adequate use of my hands, especially my deformed fingers caused by the rheumatic disorders. Sometimes, I was flooded with feelings of powerlessness that led me to tears, e.g., when the intravenous stand and the infusion pump fell on my back because of my clumsiness. It seemed that I was not going to be able to learn the essentials to actively participate in my own recovery. But I learned how to handle the infusion pump, a positive reinforcement, which is easier than using a computer. When I left the hospital, I was told that the nutrition support should start at 7:00 AM and would last 14 h. Although my recovery was not as fast as I had expected, I did observe the impact of the treatment on my weight gain, the blood that runs through my veins, the color of my skin, the keloid scar on my bladder (from surgery in 1976), the decrease of discomforts in general, and the increase of my physical strength, although I cannot maintain a high level of energy and my “erosive chronic ciastritis” (due to medicines) became gastritis. The venous artificial nutrition also made positive changes in my health, although it is tedious and somewhat painful (every 8 to 10 h/d, three times a week), which has modified my daily activities, but I keep my weight.
79
A year later, with renewed strength I started to adapt a mini apartment to my needs (handlebars in the bathroom, a room with wide-view windows, and space to move around with the intravenous stand to and from the bed, the desk, the dining room, etc.). I also developed postponed interests such as pot gardening. I can watch television and videos and see programs that teach and amuse me: movies, history programs, archaeology, scientific advances, and social dynamics. In addition, I have the energy to keep up with my checkups and treatments and avoid going back to the hospital. One benefit that has come from heaven is the possibility of reading and I take full advantage of it. Another is the opportunity to share my life with my grandson, which would not have been possible if I had been healthy enough to maintain my previous, heavy workload. To face the disorders, pain, and treatments with optimism, I use relaxation and visualization before and during each medical procedure. I also have the support of my family and friends, which brings me happiness and keeps me in touch with the outside world.
RECOVERY OF INTELLECTUAL ABILITIES When I was conscious again in April 1998, after the septic encephalopathy, I could not remember what had happened during those days. I had only flashes in which my son or the doctors, who asked unintelligible questions, appeared; moments of relief that ice baths produced; the terrible headache that made me impatiently scream for an ice bag; and the marvelous hug from nurse Margot that calmed the intense cold and anguish resulting from fever. But everything seemed to happen in 1 d and the moment in which the intense headache flooded my life, drowned it, and dominated it. When I returned home, I painfully realized that, although my language skills and social competence had not been affected, I could not fluently handle abstract concepts so necessary for my intellectual work. Nevertheless, because I had learned to inject the octreotide and administer parenteral nutrition, it seemed possible to recover intellectually. From then on I focused on intuitive management (pre-existing but nonconscious knowledge) to create the conditions to recall, by going over my philosophy of life and my concepts on life and death, health, and illness; subduing my impatience, which annoys me (the most difficult); keeping my energies to activate “my interior child”; maintaining a positive of life; and intensely living each moment and each day with happiness. On this road of life I look for solutions to problems as they come up; I move forward
80
Mansilla
step by step by accomplishing small goals; and I continue learning new things, even though I am saddened by skills apparently lost. For example, I learned how to knit a shawl for a friend’s baby and other handcrafts that I presented as gifts during Christmas 1998. After 1 mo of parenteral nutrition support at home, I was able to approach the computer: at first, half an hour of playing (I still do) like a child, although with the inhibition of an adult; I exercised with series of numbers in card games by trying to remember them as I relearned to play the games. It worked. Currently I play White Card with scores that go from 55% the day I receive interferon to 85% in my best moments. My grandson and I have been exploring chess, which I taught my son when he was 4 y old, too. At some point, I decided to read complex texts, without critique or analysis. Although I did not remember everything I read and did not read at the same speed, I continued experimenting with my intellectual capacity by playing with the ideas and the notes I had taken during my stays at the hospital and coming up with small verses that my friend Claudia told me were mots d’esprit. Here is a poem I wrote in August 1998 about my relationship with the infusion pump: MY SATELLITE (THE INFUSION PUMP) I have a marvelous satellite That has a crazy clock With a penetrating tic tac Working 14 hours I know that tic tac is the possibility of life, but sometimes, When it interrupts the wonderful silence of the night
Nutrition Volume 19, Number 1, 2003 Or when it doesn’t let the wakening of the day be heard, I would like to shut it off and fire it But my satellite is finishing its turn And will let me live Ten beautiful hours with freedom And strength to explore life In September 1998 I remembered a dream from the forgotten month. I saw myself dying from a fever caused by the septic encephalopathy, and my mother (who died in 1993) stood close to my bed telling me I would live. That day I wrote the first draft of this dream– or was it a vision? I do not know, but it does not matter; what does matter is that it was the retrieval of my lost memory and the beginning of more complex activities, such as copying and correcting some of my academic drafts, until the day I started producing new texts without realizing it. A year after using parenteral nutrition support, I published an article in the psychology journal of the Universidad Nacional Mayor de San Marcos and started to teach a course on the “Psychological Problems of Human Development.” At the end of 1999 I published another article in Anales de Salud Mental (Annals of Mental Health) of the Institute of Mental Health D/IN. In 2000 I published two more articles. In May 2001, I was asked to evaluate a social project. In the final report presented in July (my month of anemia), I included a proposal for the organization and functional design of the project, which allowed me to develop a formative, educational, and alternative approach based on work done in the 1990s. This evaluation was a stimulus for me to remember enough of the Excell program so as to direct my assistants’ work. By the end of the year, I planned to go back to
the explorative research on creativity that I was forced to abandon in December 1997, when I was to have analyzed the data from the survey I had applied to 200 high school students. If this does not happen, I will take it up again next year.
FURTHER INFORMATION I feel that my physical recovery has been possible thanks to parenteral nutrition. Furthermore, I am convinced that, if this artificial nutrition support is suspended without surgery for the neoplasia, my physical condition will return to the state that forced me to go to the hospital in December 1997. I believe that it was the excellent therapy that allowed a person with my physical condition to recover. The multidisciplinary team at the USNA was composed of excellent professionals who took excellent care of me. In addition to the firmness of my physicians, the support of my family has been decisive in my recovery, as has the presence of friends who would visit me even when I rejected them. I believe my recovery from the sequelae of the septic encephalopathy was due to the nutrition support, the theoretic approach I have developed in prevention and advertising programs, and the experience and knowledge that I activated at the “intuitive” level. Because side effects from these treatments are appearing and I have not had surgery, my endocrinologist, Dr. Tara, is arranging for me to go abroad to locate and excise the neoplasia. Meanwhile, thanks to artificial nutrition, I continue to live intensively, i.e., sharing life and creating.