Friday, December 11, 2009
Saturday, October 31, 2009
The Big Blue Chair
I've been away a long time and even briefly considered jettisoning this blog because I didn't want to write anymore. I don't know how much of the past months I'll be able to give any actual thought to - the worst things in the world happened to me again in quick succession and it is hard to look back on them. My Dad died suddenly, unbelievably at age sixty nine. Before I had time to even grieve properly, I had a respiratory arrest and was rushed, one more time, to the hospital. I was mechanically ventilated a few times. I was hospitalized for several months including the entire summer and early fall, a large portion of which I spent as a body in an ICU bed. My muscles wasted, leaving me in need of intensive inpatient rehab in order to learn how to walk again, again. My living donor kidney is failing because my doctors had to dial down the immunosuppressants in order to give me a fighting chance to get rid of some remaining aspergillus in my lungs. Between the infection itself and the chemical therapy, Lefty sustained a lot of damage.
I have returned to dialysis, possibly for a period of years. I have no more Dad to care about me and encourage me. He's not at the other end of the phone when I am alone in the hospital, unable to move, looking at the clock for hours. He will never show up and "save" me again, just by being there. There is no Dad who understands what dialysis feels like, to whom I can say "You know" after a hard treatment and know that he does. My best friend and hero is gone and I am faced with a difficult future without him. There is nobody to turn off the gravity if I get a bedsore. No matter how long it is, it happened yesterday and I am suffering today. I don't want to write about these things in detail and probably won't. It is sufficient to say that everything is different now. Every relationship, every situation and everybody is different now that Dad is gone. My father knew the answer to everything and for my whole life, all I had to do was ask him the question and do what he said. I find that I have changed in a fundamental way.
I've tried to be honest here about my feelings and to include posts on major events related to my transplants and my life after them. Lately, it has been a case of too many feelings and too much time away from my mac. Some of it is purely stage managing; Mac the Knife is upstairs at the moment, because I have moved the traveling circus back to my room on the second floor. I'm not an expert stair climber yet and must do some of the trip on all-fours (with Trixie by my side, making sure I don't fall). This mode of transportation is not conducive to the level-down of my laptop movementwise, so I'm doing this in snippets. I'm a hundred-pound woman in well-worn OR scrubs, climbing the stairs like your average two-year-old. Only, not as expertly.
Most of my time away was spent in the hospital, on a vent or in dialysis or out to lunch. Same old story... I almost died of respiratory failure (ARDS) and Dr. Sloan brought me back from the near-dead. I went down the tubes and into RWJ and NYU soon after my dad's funeral. I don't remember any of it, thanks to chemical amnestics and my own mastery of denial. I am once again a dialysis cadette. Lefty's still working, just not so much. When I was a patient at The Rusk Institute of Rehabilitation Medicine, I got my blood laundered at Dr. Judy Benstein's lovely dialysis unit. I love it there. The doctors I trust most are there. I love the nurses at NYU dialysis (Thank you Kathy, Fiona, Gloria, Perry and everyone else). At Rusk, I got wonderful care by the most good-natured nurses and nurse's aides I have ever met. Special thanks to Phyllis, who took especially good care of me. Thanks also to Camille Tavera, my wonderful occupational therapist and Hitomi Ito (the Punisher), my physical therapist. Thanks Marcia, Christine, Kevin and everyone on the physical and occupational therapy teams. Without you, I'd be a fillet.
I love Sloanie, my superhero pulmonologist, with all of my heart. I was unhappy when he told me that his associates would also be seeing me in the ICU, because they were not Dr. Sloan. I was not initially knocked over by Dr. Green when I first met him as a raving lunatic in an ICU bed. He's a very low-key guy. My mom said that she really liked him. The more he cared for me, the better I got to know him and the more I liked Dr. Green. When I got to Rusk, he stopped in to say hello on his way home almost every night and that makes him a rockstar. He's so new, I can't even find a page to link to his name, but trust me, Dr. Green is the real thing. He was so much fun, he became my favorite visitor.
At home, I go to dialysis three days a week for three hours at Fresenius. I ride down the front stairs on the chairlift, get into my wheelchair, roll onto a little bus and a series of very nice drivers take me for a five-minute ride to my dialysis unit. A wonderful woman from our church comes on dialysis days to get the chair out of the garage for me and to make sure I get onto the bus ok. I'm walking better every day, but I get tired quickly and need the wheelchair, especially after dialysis, when I feel like a juiced orange. I am working on general physical endurance and am trying to rebuild all the muscle that wasted away in the ICU. I am resigned to dialysis for "a long time" - according to the Dr. Benstein and am grateful that the unit is staffed by great, competent people and is close to my house. I feel lucky that this treatment is available to me and covered by my insurance. My hair is falling out in fistfuls. Being a professional patient is not very rocknroll most of the time, but I'm trying.
Other than that, things have been swell.
(If it weren't for Joe and Mike, I'd be writing this from jail. Or, Manhattan State.)
I have returned to dialysis, possibly for a period of years. I have no more Dad to care about me and encourage me. He's not at the other end of the phone when I am alone in the hospital, unable to move, looking at the clock for hours. He will never show up and "save" me again, just by being there. There is no Dad who understands what dialysis feels like, to whom I can say "You know" after a hard treatment and know that he does. My best friend and hero is gone and I am faced with a difficult future without him. There is nobody to turn off the gravity if I get a bedsore. No matter how long it is, it happened yesterday and I am suffering today. I don't want to write about these things in detail and probably won't. It is sufficient to say that everything is different now. Every relationship, every situation and everybody is different now that Dad is gone. My father knew the answer to everything and for my whole life, all I had to do was ask him the question and do what he said. I find that I have changed in a fundamental way.
I've tried to be honest here about my feelings and to include posts on major events related to my transplants and my life after them. Lately, it has been a case of too many feelings and too much time away from my mac. Some of it is purely stage managing; Mac the Knife is upstairs at the moment, because I have moved the traveling circus back to my room on the second floor. I'm not an expert stair climber yet and must do some of the trip on all-fours (with Trixie by my side, making sure I don't fall). This mode of transportation is not conducive to the level-down of my laptop movementwise, so I'm doing this in snippets. I'm a hundred-pound woman in well-worn OR scrubs, climbing the stairs like your average two-year-old. Only, not as expertly.
Most of my time away was spent in the hospital, on a vent or in dialysis or out to lunch. Same old story... I almost died of respiratory failure (ARDS) and Dr. Sloan brought me back from the near-dead. I went down the tubes and into RWJ and NYU soon after my dad's funeral. I don't remember any of it, thanks to chemical amnestics and my own mastery of denial. I am once again a dialysis cadette. Lefty's still working, just not so much. When I was a patient at The Rusk Institute of Rehabilitation Medicine, I got my blood laundered at Dr. Judy Benstein's lovely dialysis unit. I love it there. The doctors I trust most are there. I love the nurses at NYU dialysis (Thank you Kathy, Fiona, Gloria, Perry and everyone else). At Rusk, I got wonderful care by the most good-natured nurses and nurse's aides I have ever met. Special thanks to Phyllis, who took especially good care of me. Thanks also to Camille Tavera, my wonderful occupational therapist and Hitomi Ito (the Punisher), my physical therapist. Thanks Marcia, Christine, Kevin and everyone on the physical and occupational therapy teams. Without you, I'd be a fillet.
I love Sloanie, my superhero pulmonologist, with all of my heart. I was unhappy when he told me that his associates would also be seeing me in the ICU, because they were not Dr. Sloan. I was not initially knocked over by Dr. Green when I first met him as a raving lunatic in an ICU bed. He's a very low-key guy. My mom said that she really liked him. The more he cared for me, the better I got to know him and the more I liked Dr. Green. When I got to Rusk, he stopped in to say hello on his way home almost every night and that makes him a rockstar. He's so new, I can't even find a page to link to his name, but trust me, Dr. Green is the real thing. He was so much fun, he became my favorite visitor.
At home, I go to dialysis three days a week for three hours at Fresenius. I ride down the front stairs on the chairlift, get into my wheelchair, roll onto a little bus and a series of very nice drivers take me for a five-minute ride to my dialysis unit. A wonderful woman from our church comes on dialysis days to get the chair out of the garage for me and to make sure I get onto the bus ok. I'm walking better every day, but I get tired quickly and need the wheelchair, especially after dialysis, when I feel like a juiced orange. I am working on general physical endurance and am trying to rebuild all the muscle that wasted away in the ICU. I am resigned to dialysis for "a long time" - according to the Dr. Benstein and am grateful that the unit is staffed by great, competent people and is close to my house. I feel lucky that this treatment is available to me and covered by my insurance. My hair is falling out in fistfuls. Being a professional patient is not very rocknroll most of the time, but I'm trying.
Other than that, things have been swell.
(If it weren't for Joe and Mike, I'd be writing this from jail. Or, Manhattan State.)
Saturday, July 04, 2009
Friday, June 19, 2009
The Fig Tree
By Gennaro Desposito
To most people a fig is an expensive, somewhat exotic fruit. The purple, tear-shaped exterior can seem uninviting. The rough, sand-papery skin can seem to be a warning: “do not eat”. Once one travels into this uncharted territory, stepping outside the bounds of one’s own comfort zone and ventures to take the first bite, the ripe sweetness of this ancient fruit dances on the tongue. That first bite is a leap of faith that rewards us with the opportunity to become open to the simple wonderment of goodness. The feeling is both powerful and comforting. It is possible to experience the love of God in something as elemental as the taste of a food He created to sustain and delight His children.
For our family, the fig and even more so, the fig tree itself, is a symbol dearer than any elaborate family crest hanging on a wall or any other manmade representation of identity. It is the living, breathing embodiment of our family: of all that we are, of all that we can become. It bears the fruit of our lives and reminds us of those before us who tended the soil and fed our souls so that like the tree, we can stand tall, strong and confident. We are the individual fruit of our family tree. A single fig tree provides for a season, to be joyfully shared as we are sustained by it. We are the fruit of Grandpa's fig tree, shaded by its leaves and nourished by its roots. Our story will go on forever.
These are the lessons my Grandfather taught me as we sat quietly together and shared the ripe fruit of his fig tree. Even though I no longer live in Brooklyn, there is no home for me anywhere in the world but in his back yard, beside my very wise Grandpa. No matter how far away I am from its physical presence, that tree lives inside me and nourishes me. The goodness of this man, who spent his life in happy stewardship of his small piece of God’s garden, taught me everything I know about the sacred nature of all life and of my duty to care for that which God entrusts to me. Grandpa’s time on earth is finished but his life will never end. He lives in me and in my brother and in each of my cousins. He lives in my aunts and especially in the heart of my Grandmother. He lives in the lives of the wild birds he fed every day and the plants he tended so carefully and in that iconic fig tree. He lives forever in heaven, where he is making a home ready for us in one of his Father’s many mansions.
Youth often distorts what’s important in life. We take for granted our most precious moments only to later discover how much we need the memories of a past time. When our limited human minds fail to reproduce what our hearts long for, we turn to each other and to God for solace. When one of us falls to the ground to return to the earth, we who remain cling together to our tree and remember that God is the Gardener and it is He who decides when His fruit is ripe. We remember the sweetness of the ripe fig and the safety of the branch that bore it. We will miss it with an intensity that seems almost too much to bear. Its unique shape. Its perfect blush of color. The way it let water roll off its back to shower us for our own health. How its weight pulled the leaves just slightly lower to give us a little more comfort and shade from the sun. How that fig helped protect us and nourish us too, so that we each have a chance to contribute to the great story of our sheltering fig tree.
My Grandpa, “Gramps”, as I would affectionately call him, was the sweetest “fig” of all. I’ve never known anyone as kind as him or who had the same type of loyal, unconditional love for his family. In an increasingly selfish world, he lived his life for us. Even when he was sick for over thirty years, his mind was wholly occupied by the happiness and wellbeing of his family. I wish with every aching bit of my broken heart that I could hear him counsel me again to quit smoking or to “not carry a lot of cash” on the subway. From the day I was born, he has always watched over me and made sure I had everything I needed even when he had to go without. Grandpa’s unshakable faith that God would never fail to protect him in his many times of serious illness taught me to believe in miracles. My Grandfather’s whole life was a series of miracles and the fact of his existence proof of God’s love for us. Grandpa taught six little boys what it really means to be a good man and gave us a shining example of a husband and father to strive to emulate in our own lives. By the example of his great love for our grandmother, he taught his four daughters and two granddaughters what so many never have the privilege to witness: the fact that true love really does last forever and will only flourish in the grace of mutual respect, fidelity, honesty and a lifetime of laughter. He made sure each of us knew how precious we were to him and how grateful to God he was that we were his.
In each of my little cousins, in my brother and my aunts, in my mother and in the eyes of my Grandma, I see a reflection of Grandpa’s love for us. When we long to feel the warm grasp of his hand or to see his brilliant smile or to hear his irresistible laugh, we need only look to each other. There he is, in Nicholas’s dazzling philosophy of life. In Michael’s wry sense of humor. In Brandon’s big heart, in Anthony’s gift for storytelling, in the remarkable self-esteem and boundless joy of Gillian and Cira, in the strong embrace of my brother as we comfort each other, in the profound love of my aunts, mom and grandmother for each other and for all of the children.
Today, I wish I could return to the past for just a few moments, to be able to touch Grandpa’s face again. I wish I could feel him hug me one more time, hear his voice again, just once more. I am certain, in a way that I have never been before, that we will someday be reunited in heaven. Until then, we will treasure the strong roots Grandpa spent a lifetime nourishing for us and rejoice in the sweetness of the fruit. We will thank God every day that He chose to give our one-of-a-kind Grandpa to us and all of us to each other.
To most people a fig is an expensive, somewhat exotic fruit. The purple, tear-shaped exterior can seem uninviting. The rough, sand-papery skin can seem to be a warning: “do not eat”. Once one travels into this uncharted territory, stepping outside the bounds of one’s own comfort zone and ventures to take the first bite, the ripe sweetness of this ancient fruit dances on the tongue. That first bite is a leap of faith that rewards us with the opportunity to become open to the simple wonderment of goodness. The feeling is both powerful and comforting. It is possible to experience the love of God in something as elemental as the taste of a food He created to sustain and delight His children.
For our family, the fig and even more so, the fig tree itself, is a symbol dearer than any elaborate family crest hanging on a wall or any other manmade representation of identity. It is the living, breathing embodiment of our family: of all that we are, of all that we can become. It bears the fruit of our lives and reminds us of those before us who tended the soil and fed our souls so that like the tree, we can stand tall, strong and confident. We are the individual fruit of our family tree. A single fig tree provides for a season, to be joyfully shared as we are sustained by it. We are the fruit of Grandpa's fig tree, shaded by its leaves and nourished by its roots. Our story will go on forever.
These are the lessons my Grandfather taught me as we sat quietly together and shared the ripe fruit of his fig tree. Even though I no longer live in Brooklyn, there is no home for me anywhere in the world but in his back yard, beside my very wise Grandpa. No matter how far away I am from its physical presence, that tree lives inside me and nourishes me. The goodness of this man, who spent his life in happy stewardship of his small piece of God’s garden, taught me everything I know about the sacred nature of all life and of my duty to care for that which God entrusts to me. Grandpa’s time on earth is finished but his life will never end. He lives in me and in my brother and in each of my cousins. He lives in my aunts and especially in the heart of my Grandmother. He lives in the lives of the wild birds he fed every day and the plants he tended so carefully and in that iconic fig tree. He lives forever in heaven, where he is making a home ready for us in one of his Father’s many mansions.
Youth often distorts what’s important in life. We take for granted our most precious moments only to later discover how much we need the memories of a past time. When our limited human minds fail to reproduce what our hearts long for, we turn to each other and to God for solace. When one of us falls to the ground to return to the earth, we who remain cling together to our tree and remember that God is the Gardener and it is He who decides when His fruit is ripe. We remember the sweetness of the ripe fig and the safety of the branch that bore it. We will miss it with an intensity that seems almost too much to bear. Its unique shape. Its perfect blush of color. The way it let water roll off its back to shower us for our own health. How its weight pulled the leaves just slightly lower to give us a little more comfort and shade from the sun. How that fig helped protect us and nourish us too, so that we each have a chance to contribute to the great story of our sheltering fig tree.
My Grandpa, “Gramps”, as I would affectionately call him, was the sweetest “fig” of all. I’ve never known anyone as kind as him or who had the same type of loyal, unconditional love for his family. In an increasingly selfish world, he lived his life for us. Even when he was sick for over thirty years, his mind was wholly occupied by the happiness and wellbeing of his family. I wish with every aching bit of my broken heart that I could hear him counsel me again to quit smoking or to “not carry a lot of cash” on the subway. From the day I was born, he has always watched over me and made sure I had everything I needed even when he had to go without. Grandpa’s unshakable faith that God would never fail to protect him in his many times of serious illness taught me to believe in miracles. My Grandfather’s whole life was a series of miracles and the fact of his existence proof of God’s love for us. Grandpa taught six little boys what it really means to be a good man and gave us a shining example of a husband and father to strive to emulate in our own lives. By the example of his great love for our grandmother, he taught his four daughters and two granddaughters what so many never have the privilege to witness: the fact that true love really does last forever and will only flourish in the grace of mutual respect, fidelity, honesty and a lifetime of laughter. He made sure each of us knew how precious we were to him and how grateful to God he was that we were his.
In each of my little cousins, in my brother and my aunts, in my mother and in the eyes of my Grandma, I see a reflection of Grandpa’s love for us. When we long to feel the warm grasp of his hand or to see his brilliant smile or to hear his irresistible laugh, we need only look to each other. There he is, in Nicholas’s dazzling philosophy of life. In Michael’s wry sense of humor. In Brandon’s big heart, in Anthony’s gift for storytelling, in the remarkable self-esteem and boundless joy of Gillian and Cira, in the strong embrace of my brother as we comfort each other, in the profound love of my aunts, mom and grandmother for each other and for all of the children.
Today, I wish I could return to the past for just a few moments, to be able to touch Grandpa’s face again. I wish I could feel him hug me one more time, hear his voice again, just once more. I am certain, in a way that I have never been before, that we will someday be reunited in heaven. Until then, we will treasure the strong roots Grandpa spent a lifetime nourishing for us and rejoice in the sweetness of the fruit. We will thank God every day that He chose to give our one-of-a-kind Grandpa to us and all of us to each other.
Monday, June 15, 2009
Goodnight, Dad
My father heard his mother calling him last night at 10 p.m. and went home to meet her. He was the kind of father and grandfather that everyone wishes for but few people actually get to call their own. There are no words to explain how shocking it is to me that the sun will come up tomorrow and the stars will come out at night without him here to hold the whole world together like he always has. Although I have often lain awake at night in a cold sweat imagining the day we'd have to go on without him, I never really believed that it would come. I didn't know anything could hurt this much and not stop me from breathing. I have never been able to imagine a world without my father in it and even now, it feels unreal that he is not there in Brooklyn, listening to talk radio in bed next to my mother while I type this. I almost can't believe what I know.
My dad got wonderful, compassionate care at Maimonides Medical Center in Brooklyn, New York. Everyone there, from his doctors and nurses to the people who kept his CCU room clean, cared for him like he was a member of their own families. Drs. Joshua and Moshe Kerstein (Dad's cardiologist and pulmonologist) gave him great care, did all they could possibly do for Dad and were kind and compassionate to my mom and sisters. The nurses gave my Dad meticulous nursing care and when I saw him yesterday afternoon, he looked spotless and comfortable. I will always be grateful to the excellent doctors and nurses who treated him with the dignity and respect he deserved.
I have never been so grateful to be a Catholic, because my faith allows me to be certain that my father is in heaven tonight.
I will miss him as long as I live.
My dad got wonderful, compassionate care at Maimonides Medical Center in Brooklyn, New York. Everyone there, from his doctors and nurses to the people who kept his CCU room clean, cared for him like he was a member of their own families. Drs. Joshua and Moshe Kerstein (Dad's cardiologist and pulmonologist) gave him great care, did all they could possibly do for Dad and were kind and compassionate to my mom and sisters. The nurses gave my Dad meticulous nursing care and when I saw him yesterday afternoon, he looked spotless and comfortable. I will always be grateful to the excellent doctors and nurses who treated him with the dignity and respect he deserved.
I have never been so grateful to be a Catholic, because my faith allows me to be certain that my father is in heaven tonight.
I will miss him as long as I live.
Friday, June 12, 2009
Dad
Our father, Gennaro Mazza, is in the hospital again, critically ill and on the mechanical ventilator. Please join us in praying for his swift return to health. We don't care Who you pray to; your God or gods are just as good as ours when it comes right down to it. Dad and I have been prayed for during hospitalizations by people all over the world, of all possible denominations and it is my firm belief that these prayers were instrumental in our various recoveries from grave conditions. Please dedicate some of your good thoughts and prayers to his complete return to health... he needs them more than he ever did before. Thanks.
Sunday, May 31, 2009
Friday, April 17, 2009
Tuesday, March 17, 2009
Happy Brain Surgery Day!
My favorite organ continues to provide hours and hours of entertainment... probably because Jethro was not yet up and running when I had it repaired. Today is the 17th anniversary of the experimental embolization of my cerebral aneurysm. Today, this approach to the fixation of cerebral aneurysms and other bleeding in the brain is common and much safer than traditional brain surgery in many cases. I highly recommend experimental brain surgery!
Muchas gracias, Dr. Berenstein. I'm a satisfied customer!
Muchas gracias, Dr. Berenstein. I'm a satisfied customer!
Wednesday, March 11, 2009
The Big Bad
The mom of a New York City Police Officer died of acute kidney failure this week. She did the sadly familiar "JFK" to "RWJ" shuffle, in the interest of finding out what was wrong with her body. By the time she was diagnosed, it was too late for this frightened fellow kidney disease patient and mom. Her son is my sister's friend and a few weeks ago, Officer Bitchface called me to make sure it was ok that she gave my telephone number to her friend so that he'd be able to call and ask questions about kidney transplantation. She told me that her friend's mom was intimidated by the prospect of transplant surgery and I was hoping to allay some of those fears by sharing my experience with them. I talk and correspond with lots of people who have undergone or are waiting for their transplants. My sister's friend never even got the chance to call; his mom died the day after she was diagnosed. This poor family was blindsided by the Big Bad and it makes me so angry.
I hate ESRD, this killer of moms, with everything I've got.
Be good to your kidneys.
Know the signs/symptoms of kidney failure and what to do if you have them.
Consult a nephrologist at a major university hospital in the large city that is closest to where you live. Do your homework and learn which hospital has the best overall kidney transplant statistics and make yourself one of their future success stories. This world can't afford to lose any more mothers to end stage renal disease. Or anyone else, for that matter.
I hate ESRD, this killer of moms, with everything I've got.
Be good to your kidneys.
Know the signs/symptoms of kidney failure and what to do if you have them.
Consult a nephrologist at a major university hospital in the large city that is closest to where you live. Do your homework and learn which hospital has the best overall kidney transplant statistics and make yourself one of their future success stories. This world can't afford to lose any more mothers to end stage renal disease. Or anyone else, for that matter.
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