In early 2009, our father, Marvin L. Hainsey was diagnosed with pulmonary fibrosis (PF) at the age of 79.  He had just finished radiation treatment for prostate cancer.  He was feeling more winded in doing normal activities and when he exerted himself so he wanted to get checked out by a doctor.  The disease was new to him and his immediate family so we started reading up on it.  As there was no previous history with Dad, the doctors had no way of making a prognosis on its severity in his case, although we did know it was a serious disease.  So we remained upbeat and Dad proceeded with his life now with the aid of infrequent oxygen therapy. 

          In April, Dad was stricken with what we later found out was acute pneumonitis.  This is one of many manifestations of PF and it nearly took his life.  He was hospitalized for several days and came home but required constant oxygen therapy as well as high levels of prednisone in order to stay alive.  The doctor released him from the hospital, saying that less than 20% of PF patients recover from what he had experienced. At home, he did remarkably well, moving from being bedridden to being able to move around within the confines of his 50ft oxygen hose to eventually being able to be driven in the car with portable oxygen.  But it was not always an easy time.  High levels of prednisone along with his desire to keep active made for sometimes challenging situations. Those that knew Dad understood that the single-minded determination that he possessed that made this time difficult also made his recovery from this event possible. 

          In early June, he was diagnosed with a throat infection and was put on antibiotics.  This was followed by a rapid deterioration in his ability to breath.  He was taken to the emergency room, diagnosed with pneumonia but was released after his breathing went back to previous levels.   Upon returning home, he was noticeably weaker and his oxygen requirements stayed high. Even under these conditions, his quality of life remained very high as he relished visitors, family and phone calls. Often the difference between a good afternoon and something less to him was a phone call or visit that boosted his energy and enthusiasm. Up to his last dinner, he was eating well, telling jokes and cherishing his family.  Mom returned from the Mayo Clinic on the evening of June 5, and they discussed in detail what she had found out.  It was the first time that she had made the trip without Dad and we know for the fact he was greatly relieved and happy when she got back. In addition, Mom brought Dad a strawberry pie as a treat.  He ate his piece with a big smile on his face and went to bed. 

          Sometime during the early hours of June 6, 2009, our Dad passed away from respiratory failure.  There are almost 200 signatures of people who attended the viewing and memorial mass.  It was fortunate that at the funeral home there were no other viewings at the same time as the crowd spilled over into the lobby, hallway and into a separate room. Per his wishes, he was cremated and his ashes will be divided.  Some will be put with his wife of 56 years, Catherine and some will be spread in the hills and streams of his beloved Clearfield County Pennsylvania.

The Children of Marvin Hainsey,

Kathy, Mike, Dennis and Don

George S. Leflar

On July 25, 2008, my husband lost his battle to Pulmonary Fibrosis. 

I am not going to tell you how hard his illness was... I will say, “It took his breath away.”

I dedicate this to my best friend, my lover, the love of my life……

I was blessed when you came into my life, loving me so much,

            I will never forget your gentle touch.

My heart is broken but full of love and memories.

          You gave our family so much of “You,” your love, your laughter, your granddad way.

          Your strength and your love of life has shown me and gives me my desire and strength to go on and live life…..I thank you.

You passed one year ago, the journey has been hard, I leave you with a poem that has been a comfort to me:

“I will never forget you”

You will live in me always.

Your words, your touch, your heart, your soul are all part of me.

My heart is full of your memories.

My spirit has been forever touched by you.

Thank you for the gift of your life.

I will never forget you.

Love ya Honey!

I miss you so very much.........

Dale Hillard – (8/27/36 – 1/30/09)

My dad was born in Mattoon, Illinois on Aug. 27, 1936 to Victor and Mary Hillard.  He had one older brother, Richard.  His dad had been sent to 26 different schools in his childhood and so my dad was offered a more stable childhood.  But, jobs were scarce and Victor called a cousin in central Illinois looking for a job on the farm and off they went to LeRoy, Illinois.  They settled in a small house in the country and my dad was sent to a one room school.  There, many lifetime friendships were formed.  When the “country” kids hit eighth grade they were bused in to town.  It was on this first day of eighth grade, as the country kids were asked to stand along the wall until they could accommodate them with seats, that my mom first laid eyes on my dad.

My mom, Carole, was a “city” girl and she thought my dad was tall and strong and handsome – all attributes he kept until the very end.  They were first friends, then dated and eventually got married with my sister Vicki following shortly.  My brother, Mike, was born next and my mom and dad did everything they could to support their young family.  My brother Steve came along in the 60’s and finally me, in November 1970.  My life never knew a day where I couldn’t reach my dad and count on his support. 

My dad never shied away from work, after his early years of farm jobs I’m sure others didn’t seem too bad and he wasn’t above having 2 or 3 at a time.  I’ve heard stories of pumping gas, working at JC Penney’s, volunteering as a fireman, and eventually getting a job at Eureka-Williams Vacuums which he kept until he retired in 1992.  After that he helped create a garage door business that he owned with my two brothers.  The door business was as close to a hobby as he ever got – he enjoyed working and was able to do it until the end.

He worked hard to support us, kept his lawn and vehicles in an almost unreal state of neatness and perfection, watched a few sports games, was active at the church, and spent his free time with the family.  My mom and dad started going to Florida in January the past several years.  My dad loved the sun and being outdoors and the long dark Illinois winters really got to him.  It was as they were heading to one of these trips that my dad stopped at the emergency room to have what he thought was a hernia looked at, they didn’t think much of it and told him to go on and enjoy his vacation. 

When they returned from Florida he went to get the results and it turned out, by chance, that they found a dark spot in his lung.  It was diagnosed as lymphoma in the lung.  For the next several years my dad was in and out of the doctor’s getting this checked and looked at.  At one point it was getting bigger so they gave a treatment of chemotherapy.  It didn’t change so he then took a small brown pill that had to be refrigerated.  The doctor’s said the spot looked less dense so we were all thrilled with the outcome.  Sometime after that my dad started having trouble breathing.  He ended up in the hospital and was told he had a blood clot.  Here is where things get even more confusing, as several doctors were involved and no one would really give a true story of what was really going on.  We ended up at the University of Chicago and even that doctor did not tell us the truth of what was happening.  My dad had idiopathic pulmonary fibrosis.  He tried some breathing therapies but nothing helped.  He was put on oxygen which he used as he felt he needed it.  I got him an oxygen monitor for his finger and he kept track of his oxygen levels.  At Christmas I know he wasn’t too well and had some trouble catching his breath, but I had no idea how bad it was. 

After a difficult decision my parents decided not to go to Florida this year and on January 24 his oxygen levels were down in the 70s, the ambulance was called and they went to the hospital.  Sometime while still in the emergency room my mom, sister, and brother Mike were there to hear a doctor describe exactly what would happen as the slippery slope of pulmonary fibrosis had started and there was no going back.  But none of us listened to this doctor and we all pinned our hopes on all of the other doctors who were checking for pneumonia and even planning further cancer treatments, etc.  My dad by then was sitting up, completely normal, talking, watching sports and we all assumed getting out of the hospital any minute.  Yes, his oxygen levels were low when he moved around but we’d just keep him still.  I came to see him over the weekend then left for a business trip to New York, of course he assured me I should go.  On Wednesday I was coming home and my mom felt things were looking up.  I was nervous and decided on spending Thursday at the hospital with my dad to try and say all of those things I never got around to.  Well, on Thursday morning my mom called to say my dad had taken a turn for the worse.  He was in intensive care and his oxygen levels were very low.  My husband drove me 2 ½ hours as fast as possible to the hospital and I was able to talk with my dad.  He was obviously in grave condition but still joking and talking.  It was very sad but I still thought they would get him out and improve his condition.  That afternoon he had another episode of extremely low oxygen levels, the doctors gave him the medicine they could and he went to sleep.  He would never wake up again.  

My mom has said that my dad was not a “joiner”, I agree but realize that he didn’t need to.  He had all he ever wanted and much more around him.  Whenever he met someone new he knew just what to say and to talk to them about and they always left my dad feeling like they had met a friend and a really great guy.  I was always so proud of my dad and his unending support has made me who I am today.  I don’t want to seem like I’m saying the typical things you hear about a person after they pass away, “they were great”, “never knew an enemy”, etc., when that may have been stretching the truth.  For my dad, he was truly a man among men and he truly leaves a wide gaping hole that no person could fill.   

I know my dad is in heaven and I just hope that maybe he is happy and does not have to suffer worse, or that he didn’t have to live as an invalid in his chair, not able to get out and work in the yard and enjoy the outdoors.  He couldn’t have lived that way.

I hope that he is happy with his family and everything we’re doing.  I know we all want to honor him in every way we can.  We all need to stick together and look out for my mom.  I am writing this today on my first Father’s Day without my dad.  I have been so fearful of this day, so sad and envious to see those out and walking around with their dads, but today is going to be the last time I will be sad on Father’s Day.  I will be happy that I had a dad who was wonderful and who was worth honoring and remembering on a day like today or any day.  I will be thankful that every memory I have of my dad is a good one and I will cherish and celebrate them.

Christi Hillard Lowell    Sunday, June 21, 2009

John S. Smith M.D.

BORN: OCTOBER 18, 1929 – DIED:  MAY 6, 2009

Jeanette "Jan" H. Sweet
of Chelsea, MI

Jan lost her courageous battle with Pulmonary Fibrosis at the University of Michigan Hospital on March 1, 2009. She was diagnosed with PF in April of 2008 and did fairly well until the last two months she was with us. Her beautiful smile and cheery disposition will be missed by all that knew her.

After her love of family her next love was her job from 1978 to 1999 as an Administrative Assistant to the Counseling Department at Chelsea High School in Michigan.  With all of her own children and grandchildren this was a natural job for her.  She wore many hats in her job and did them all well.  Her family learned some things from her boss that not even they knew until her passing.  For instance, some students would have coats show up in their locker so that they could keep warm in the cold weather.  She kept the counseling department well organized and was known to leave sticky notes all over the different offices to make sure things got done on time and done correctly.  We will all miss her thoughtfulness of others and the greeting cards she would send to always let you know she was thinking of you.

She was born the daughter of LaVerne and Delphine (DeMers) Erickson on March 4, 1936 in Rice Lake, WI. On August 19, 1972 she married Mike D. Sweet and he survives. Jan enjoyed playing golf, playing euchre, planting flowers in her garden, and watching hummingbirds. She was a member of the St. Mary Altar Society and a member of the Regional Council of Catholic Women. In addition to her husband, she is survived by her mother and two sisters, Diane Lindwall of San Diego, CA and Rosalie Hasenfus of Boothbay Harbor, ME. Also surviving are her children, David (Julie) Proctor of Harrison, Lori (Terry Iles) Butler of Chelsea, Janis Weston of Chelsea, Barbara Lebel of West Palm Beach, FL, Margaret Sweet of Chelsea, Philip (Keely) Sweet of San Francisco, CA, and Lt. Col. Richard (Lara) Proctor of Navarre, FL, and 14 grandchildren. Jan was preceded in death by her father and her daughter, Julie Proctor.

Pukh Raj Baheti (1947 – 2008)

It is so hard to describe such a personality in words but here we attempt to do so and hope to do my father justice. 

Shri Pukh Rajji Baheti was born and raised in India.  This is where he began developing the personality and charisma that he is so missed and loved for.  The most important thing to him was family.  For this reason, he decided to move to the United States of America for opportunity and hope for a better future for his family. 

Our father spent most of his adult life working 15 hours or more a day in hopes of providing a better life for his children.  He wanted his kids to have all of the opportunities that he did not have.  Like he always said, “If it is possible, it is possible in this country”, thus he worked hard and brought all 3 of us, his children, to always believe in ourselves, to never succumb to what we do not believe in, to realize the importance of education, to always be good citizens, and to understand the importance of family both nuclear and extended.

The irony of the situation, he had finally gotten time to start living his life for himself.  We were all grown-up, educated and doing well for ourselves.  Everything he worked so hard to achieve was finally going to start paying off. 

Over the last couple of years, he had started slowing down a little bit and decided to part-take in the activities that he enjoyed such as gardening, listening to music, happy hour with friends, watching the History, Discovery, and NASA channels, going to parties with mom, dancing, telling jokes, watching movies, and losing to his children in card games.  He was looking forward to traveling the world with mom, especially Switzerland.  He was getting life situated so that he and mom could spend half the year in the States with their children and other half in India with their beloved extended family. 

In December 2007 we all decided to go as a family to India, first time we had done so since we moved to the States, to visit our family and to celebrate the engagement of our sister and, now, brother-in-law.  It was such a happy time for him and my mother as this is something they had been looking forward to for what seems like their entire life.  There was not a worry and no clue of what was going to happen in the very near future. 

We have all heard of the saying “life can changes in minutes” but never really believed it because thus far it had never done so for us, not until January 2008 anyways.  Mid- January is when our father was coming back from India.  My mother and I went to pick him up at the airport just to find out that he had shortness of breathe and was coughing a lot all the way back so they took him straight to the hospital.  This is when the saga of deductive diagnosis started taking place.  The ordeal of tests after tests and needle after needle started for him with the doctor’s trying to figure out what was going on.  This is when life did not change in minutes it started changing in seconds for our family.

During a period of two weeks, he had gone from being able to breathe on his own to requiring oxygen.  He went from being able to walk and move around to being completely bed rested.  He went from being a man that loved food to barely having an appetite.  The one thing that never dwindled was his desire to fight whatever he had and to make it to my sister’s wedding.

During the next two weeks we changed hospitals in order to bring him to a hospital known for having the expert of experts in lung diseases.  This is where he was diagnosed with Idiopathic Pulmonary Fibrosis (IPF).  It was determined that the only chance he had to living was to get a bi-lateral lung transplant.  So during this period the doctors ran more tests to see if he qualified as a transplant candidate.

During the last week and a half of our dad’s life he had qualified for a transplant and was put on the list.  It seemed like we were there against all odds, we made it this far...this must mean that this was meant to be, right?  But this was not the case, he was soon put on the ventilating machine and that ended his journey.

Throughout the five weeks, though he went from having no detrimental diagnosis to the suffering from IPF, our Papa showed so much courage, so much will power, and so much desire to live.  Even when he found out the severity of his situation he remained so strong and gave us the courage to get through this.  He did not fear the future nor did he fear death for he said that regardless of what the outcome was he lived a very good life because he was blessed with such a loving and caring family.

We can never have our father back in his physical being but we do plan on keeping him alive in our memories and through our efforts of living with the values he taught us and nurtured us with.  Our father will always be remembered for being a loving and devoted husband, a wonderful and understanding father, a great friend, a caring person, a good human being, a lover of life, and most of all a fighter till the end.

He fought this silent disease with every being in him.  We fought the circumstances and the disease as a family yet we were unable to change what was destined to be.  Now all we hope is that we can help others learn from our experience and use our experience to raise money and awareness about IPF.  

In conclusion, “To the world you might be one person; but to one person you might be the world” - Dearest Papa:  We were blessed to have you as our father and you were and continue to be the best papa any kid could ask for, we love you more then words can describe, we are so proud of you for always living your life with dignity, and we are continuously amazed by the will power you had and the fight in you that enabled you never to give up.  You are our world and we will miss your physical being but your spirit will always live on through us. 

In the Deepest Regard and with Loving Memories,

Our Father’s Children

                                                 

Patricia Ann Sterritt

Patricia (Patsy) Sterritt was born on July 5, 1932 to Earl and Dorothy Button of Morris, Illinois, a small farming community seventy miles southwest of Chicago. She was the second oldest of five. In school, she was the “dream girl” who lit up the room– her mother told stories of former boyfriends found crying on their doorstep. But it was that kiss from her high school sweetheart on New Year’s Eve 1949 that did it! Patsy married Gene Sterritt in 1952 and four years later they were the proud parents of four children, Coleen, Kevin, and twins, Kathleen and Kimberlee.

After close to twenty years in the Chicago area, and sending their children off to college, Patsy and Gene moved to the Pacific Island of Guam, which afforded them the opportunity to travel throughout the Asia-Pacific region. Their travels continued for another twenty years when Gene received a commission with the U.S. Public Health Service. Throughout this time, Patsy was an avid collector of contemporary and Pacific Island art, a passion she never relinquished. Her many homes were always a reflection of her refined sense of style- beautiful furnishings, original artwork, flowers, and books.

Early in life, Patsy developed an enthusiasm for jazz, and to her immediate family she was their “Satin Doll.” She loved the music of Bobby Short and dancing “the shag” with her brother and jitterbug with her daughters. Patsy also had a life long interest in gardening, cooking and Chinese brush painting. And, she will always be remembered for her political fervor – as a committed liberal, democrat. She would have been absolutely thrilled with the election of Barack Obama!

In 1993, Patsy was diagnosed with breast cancer and received outstanding treatment at Emory University Breast Cancer Center in Atlanta, GA. She later participated in the Avon Breast Cancer Awareness Walks with her family and wore her survivor’s hat with great pride.

Patsy and Gene retired in Pasadena, California in 1997 to be near two of their children and enjoy the beautiful Southern California weather. In February 2005, Patsy learned that she had Idiopathic Pulmonary Fibrosis. She immediately began treatment with specialists at the UCLA Medical Center that involved taking various medications, most of which she could not tolerate. While she was never in any great pain, there were times when she labored for breath even though she was on a concentrator full-time. Gene was her fulltime caregiver and Patsy was a wonderful, sweet patient, never complaining and always grateful for even the littlest things you did for her. She succumbed to this tragic disease on January 16, 2008.

Patsy’s death was a tremendous loss to her family as she was an extraordinary mother, loving grandmother to her four grandchildren, and, most of all, a devoted wife for over fifty-five years. Her life journey with Gene was one of love, laughter, adventure and discovery. They both instilled in their children a deep appreciation of education, the beauty of diverse cultures, respect for human rights and a love of art, music and literature. For this, Patsy’s life will be a lasting legacy.

~~~~~~~~~~~~~~~~~~~~

The following poem was written by Patsy’s eldest granddaughter,

Emelihter, a few days after her death. Emelihter is a published poet and an Instructor of English at the University of Guam.

For my Beautiful Grandma    

   Kalpana Sharma

      1950 – 2009

My Mother passed away on 16^th January 2009 from Interstitial Lung Disease.  She fought this terrible disease for almost 3 years with great courage. Last 1 month was terrible for her, hospitalized twice and was on O2 24x7. I was fortunate enough to be on her bedside during her last days, but now when she has gone, can feel the emptiness that no one can fill. Losing a parent is a terrible experience. This is the story of my mother.

My Mother was born in a small village in Uttar Pradesh, India and was the eldest child among 3 sisters and a brother. She lost her father in a very young age. On 15^th February 1964, at a very
young age of 14, she got married to my father Mr.Laxmikant Sharma. The couple got blessed with their first child on 15^th November 1965 and welcomed their second child in 1969 and the youngest, i.e. me, in 1971. Due to the early marriage, she could not complete her education and thought of taking this up when she was expecting me. Her hardwork and dedication paid off when she passed her 10^th examination.

From the childhood days, She got used to the hardwork, dedication and sacrificing things for family. In 1970, my father moved to Mumbai for a better job oppurtunity and after my birth, my mother moved too with all the 3 kids. This was in the year 1977 when my elder brother met with an accident and my father was not able to meet the hospital / medical expenses when She took up a job as a Teacher with a charity organization called Mobile Creches in Mumbai. Though she use to get a small amount as an remuneration, but for her, this was good enough to support my father in meeting household requirements. This new oppurtunity gave her an oppurtunity to extend her support for the cause of charity. She worked hard for the growth of the charitable organization and every year, she stepped up a new ladder of success. This brought her close to many charitable organizations and she created a niche for herself.

This hard work continued for many years. With grown up and settled 3 children, she felt, keeping herself busy with some more work would give her oppurtunity to meet up new social life challenges. Her job involved lots of travelling from one place to another in Mumbai city. Back from the job, she use to devote much of her time with grand children with almost no time for herself.

It was in the year 2004 that she started complaining of intermittent breathlessness and started taking homeopathic medicenes. With no sign of relief from the treatment, she decided to visit a Chest Specialist and this was during this treatment and check-ups, it was revealed that she is suffering from Interstitial Lung Disease. As a side effect of the medication, she also got diabetic and this was enough to give her a difficult time. Whenever she visited the doctor for a routine checkup’s, she use to visit me for day and her presence at home was very lively.

After 3 years of medication and check-ups, her condition suddenly got deteriorated with frequent breathlessness and high fever. This, according to the doctors, was not a good sign. On 17^th December 2008, she was admitted to the ICU for the first time due to constant struggle to breathe and got discharged on 27^th December 2008. At home, she was continuously on O2 and was never seen as charming and active as she was before 17^th December 2008. She had accepted Breathlessness and fever as a part of her life. On 12^th January 2009, we decided to move her to hospital again with a high hope of getting her home back healthy. When we admitted her to the hospital, the doctor, treating her for 3 years, informed us "She might not survive for long". These words were enough to shatter our hopes.

A visit to my home for a vacation was long overdue and when she was in the ICU and on O2, she assured me on 13^th January 2009, that once discharged, she would directly come to my home and stay with me for couple of days. The way she was interacting on 13^th January 2009 was very positive and we were very much hopeful that she will get back to her regular routine life in couple of days time. Suddenly on 14^th January, her condition got further deteriorated and her Oxygen intake %age had to be increased. Since then, every hour she was seen struggling for each and every ounce of oxygen and she never recovered. January 14^th, 15^th and 16^th were the worse days of her life and finally, on 16^th January 2009 at 18:30 hours, she took her last breath with all of us surrouding her bed. All these 3-4 days, she was struggling and we could not do anything for her. She was a great lady and loved by many. We miss you a lot mom and no one in our life can fill the void created by you. Love you mom and hope to see you soon.

www.stemcellbiotherapy.com

The Gardener

Once there was a beautiful garden. Roses, lilies, blue belles and trumpet vines flourished under the care of the gardener. The gardener was a kind man, but was often filled with great anger, for the gardener had great sorrows in his life.

Slowly, as the gardener withdrew deeper into his sadness, weeds began to creep into the garden. Eventually the roses could hardly find the sun and the poor blue belles were all but lying on the ground. The sun baked the soil into a dusty crust and the plants began to wither.

One morning, as the sun rose, so did the gardener. He impatiently swung open the garden gate. As it loudly slammed shut, he kicked a stone and it rolled across the dusty path into the flower bed. The gardener stared in astonishment at what was once a beautiful, vibrant garden. Angrily he fell to his knees and began to rip the weeds out of the ground. In his haste he pulled blue belles and lilies out by the handfuls. The poor flowers lay within the pile of weeds mourning their once joyful home in the garden, and the happy time spent with the gardener.

The gardener’s tears flowed down his cheeks and onto the ground. The tears soaked into the parched soil and fed the roots of his beloved plants. The withered blossoms felt the sorrow of their old friend. They felt his grief and his pain, and they forgave him. As the gardener’s sobs came to and end he looked up and felt overjoyed to see that right before his eyes his garden was blossoming. The roses turned their faces toward the sun light and the lilies spread their foliage to cover the barren ground.

This time it became a chorus and it grew faintly louder. As his mums swayed slightly in the midmorning breeze they sang to him. So softly they sang, rejoicing in the sun, and the breeze, reminding him that in everyday things- we find beauty.

The gardener felt ashamed- beauty in everyday things- lately he had become cynical and callous to the world beyond his garden. Everywhere he looked reminded him that time was running out. Every clock, every calendar, every passing season was a harsh reminder of his limited time. Every piece of good news was tarnished and every piece of bad was a waste of his precious time.

Still the mums sang. He felt he should be glad- sing with them and welcome this spirit of peace and love into his heart- but he could not. His heart was filled with sadness, and fear. He coughed again and his eyes filled with tears. Then he heard the leaves rustle in the trees as they joined the hymn. As he strained to hear the words he could feel warmth at his back. The sun shone so brightly upon his garden. The warmth- it grew- and slowly ever so slowly he felt at peace, in his garden, on his knees, listening to beauty surround and calm his weary soul.

The gardener was not sure how long he knelt in his garden listening that morning, but when he rose to his feet he smiled. He looked at his precious blossoms tucked in for the winter. He knew not what to expect, nor if he would be able to see their glory in the spring. But, he knew he had done the best he could to help them grow, and for now, that was enough. With the warmth of that lovely song still in his heart, he hummed and slowly closed the garden gate.

The anger is gone. The gardener lies on a small mound of earth. He feels the sun on his face. He remembers when he swam, and ran with his children. He remembers long walks by the lake with his wife. He remembers the dog.

He wonders if he will see the dog soon, in heaven.

He breathes slowly and deeply. He hates this, this feeling, this struggle. He remembers cutting down trees, lugging wood, hiking deep into the woods to beautiful places no one has ever seen, or at least, he smiles to himself, that’s what he liked to believe. He took his son to a few of those places, long walks, cold beer. Life was good.

Slowly he pulls himself to a sitting position, another labored breath. His grandchildren, they always make him smile, and worry. He thinks about camping with his own children; river rapids, canoe trips, fishing. Things he wanted to do- still- with the kids. He can’t. This saddens him, another breathe, damn, even sitting is hard work.

He has been over and over this in his mind- why me? Why now? And it can not be answered, so he lives the way he has lived for the past eleven years one day at a time. At times he worries that this day is his last. He thinks his heart may give out, but he wills it to keep working; it can’t be time to go yet.

Days passed, weeks crept by, and still the gardener did not return. His flowers grew against their will. Nature required them to reach toward the warm sunshine, but in their hearts they were wilted and sad. Only when the rain came, not the occasional summer shower, but the intense driving rain beating the flowers into the ground could they truly mourn their gardener. The harsh rain made them feel; the dark sadness, the complete loneliness, the vast unanswered horizon of days came upon them and they could cry. So it was only when this rain came that the numbness of the sadness that enveloped them would lift and their little souls would be cleansed.

The entire summer passed in this way. The beautiful Lily grew and she watched as seedlings spouted, but from it could take no joy. Watching over the garden had always been her favorite pastime. How she gushed over every new blossom; but this summer she stood in all her radiance, silent. The pain was too great; being stoic was the only way to remain strong.

Soon the roar of happiness from the garden rushed over the Lily. Wrapped in all of her warm memories she was radiant. Truly her gardener had not left her entirely alone. Her garden, full of memories and love was still here with her. It was true, the seeds, the legacy you pass on, it lives forever. Slowly the Lily smiled; as she did she felt the tickle of the breeze through her petals and knew that her Gardener was truly still with her.

I wrote this story for you Daddy. ( My Daddy died May 25 2007)
I Love you.

Cheri

8/27/06
Cheri Baron
Peekskill, NY

Nancy LaFevers

Nancy LaFevers who kept her professional name of LaFevers, was well known in her field by that name. Nancy was a quiet and dedicated person who literally helped thousands of individuals throughout her long career in education, speech pathology and learning disabilities. Thank you for visiting this site dedicated to her memory. She died April 26 2006.

She was very involved with learning difficulties and most especially

Dyslexia. We estimate in her long career she touch on the lives of 7-8000

people. Hopefully making them better through her recommendations.

We had an estimated 350 people at her memorial service. I received at least 500

Condolence cards from people who could not attend.

Her mother died at her same age of PF, and 2 aunt’s and one uncle. It was in the genes.

I created a web site for her. www.nancylafevers.com.

Thank you for the good work you are doing. I have your organization in my will.

Jerry Ambroze

August 19, 1947-January 24, 2007

Our mom was an extraordinary woman. She was God fearing, compassionate, strong, selfless and loved unconditionally. She was a good mother and a wonderful wife. I would like to tell you a little about her as well as her struggle with pulmonary fibrosis.

Mom was only 59 when she died. The massive void she has left in our family will never be filled. You truly do not realize the impact one single life can have on so many until they are gone. My mom did many things in her life and overcame some great adversity. She was a hard worker but always had a smile on her face. Her life was our Dad Jim and us kids and the grandbabies. Those three things are what she lived and breathed for. Mom and Dad met in Bremerton, WA in 1964. He was in the Navy and she was visiting her brother who was also in the Navy. He was 21 she was 17. As children we would ask for them to tell us the story of when they met. It was so sweet. Dad is from Pennsylvania and Mom from Texas so for them to meet in Washington State it was God driven.

They both said then they kissed for the first time they heard bells. They were engaged Christmas Eve 1964 and married April 20, 1965. They moved to Northeastern Pennsylvania and in that area is where as she put it "her 4 greatest joys "were born. We relocated to Arkansas in 1981. Mom and Dad never moved again and we were all pretty much raised there and 4 of her 6 grandbabies where born there as well. She was in the delivery room when 5 of them came into this world. The homespun wisdom she gave us was more valuable than anything we learned in school. We learned so many things from her and our Dad. She had a wonderful sense of humor and was always laughing. She taught us it is ok to laugh at yourself. She was famous for her one liner of advice that could solve a problem. Most of these were biblically based. She was always there for us no matter what was going on in life. If we needed her she was there. We first knew something was not right with Mom when she was getting very winded doing minor things. In November of 06 the doctors told her about Pulmonary Fibrosis and that is was a possibility. They said on average life expectance is 3-5 years. This was devastating to all of us but we had 5 years at least if this is what she had. Christmas came and mom was doing well. I told her in my kitchen nothing could happen to her because I could not take it. She said nothing was going to happened to her she would be fine.

January 8 of 2007 mom went in for a biopsy of her lung. Our worst fears were confirmed she had the worst type of Pulmonary Fibrosis. She did not seem to recover well from the biopsy and was taken back into the hospital around the 19^th. She continued to not improve. She was so strong for all of us. She asked my sister and me if it was bad while we were alone. I started to cry and turned away my sister told yes mom it’s bad. She turned to me not a tear in her eye so softly and said "Don’t you cry it will be alright". The doctor told us she had maybe 6 days to 6 months on January 23. She died at 4am the next morning. Mom and I talked one time about how we would like to go when it was our time. She told me she wanted all of us kids and of course dad around her and to be buried on a hill with a nice view. I am happy to say she got both her wishes. My dad held my mom and talk to her for hours softly right up until she took her last breath the four of us where surrounding her bed holding her hands. We found out later they found this in 2003 but she was not told about it. She was on her 5 year her funeral was a testament to the person she was. There were not enough chairs in the chapel to hold everyone. She was loved by many and absolutely adored by her family. She was a great lady and we miss her deeply. We love you mom and we’ll see you soon!

Aubrey T. Johnson Sr.

This is a story of a man who has left a profound impression on every single person he has encountered down his path in this life. If it is all the same, I do not wish to share the details of his struggle with PF. Other than the fact that he was diagnosed with PF in 2001 and he continued to live his life with pride, dignity, and conviction until his passing on Nov. 9th 2006. I want to talk about the life he lived and some of the people he's touched. My father, Aubrey T. Johnson Sr. was born and raised in Cincinnati, OH on March 5th, 1945. In 1963, he enlisted in the U.S. Army and proudly served for 20 years. This is where he met my mother, Mary, and were married in September, 1967. During their marriage of 39 years, they gave birth to two sons and two daughters. My father wasn't the kind of man who took me to baseball games, or liked to play catch. He took the more serious aspects of being a parent to heart; emphasizing to us the importance of self-esteem, treating others with respect, learning responsibility, and being proud of who we are. With him, "Johnson" was so much more than a name. It was a significant presence that was meant to be well represented in everything we do.

In the 2nd half of my father's military career (the mid-70's), he was a recruiter and touched the MANY lives of young people looking for direction after high school, including his own sister-in-law and neice. I'm sure my father recruited lots of people who are the Grandmothers and Grandfathers of today. He simply did his job; lending a hand in developing their foundation as an adult - therefore giving them the tools to develop the foundation for a family. I have never met a man with stronger convictions, and I have never met a man who was a better listener than my Dad. Whenever you had a problem, or wanted his advice on something. You were always welcome to discuss it with him. My father extended this to friends and neighbors; so you can see how he touched the lives of so many people, not just his family members. He listened with genuine empathy, and responded as if the situation were his. My father was very realistic when it came to dying. He's always explained to us that its a part of life, and that preparation for the family was the biggest honour that you could do. He not only preached this, his actions rang even louder. Over 10 years ago, he purchased sites for him and my mother, and during his Grandmother's time of illness, he was the pillar who made all the arrangements for her health care, nursing home, and ultimately her funeral.

In closing, I would like speak on behalf of the entire Johnson family to thank YOU, Aubrey T. Johnson Sr., Dad, for the way you touched our lives. Thank you for the many lessons of life you've given to us. Thank you for your loving advice and listening to all of our problems. Thank you for keeping us safe. Thank you for being the great provider that you were. And thank you for being my father. I truly believe deep in my heart that we will see you again real soon.

- Aubrey T. Johnson Jr.

About Paul: His presence in our online support group was legendary. His story is even bigger than he was! In March 2004, Paul was given a week to live and was told by his doctors to go home with hospice as there was nothing more they could do. Paul came home and then went on to live a lifetime in the 10 months he was granted by Him. Armed with PFF brochures Paul would tool around the Super Wal-Mart looking for others with oxygen to talk about our disease. Using his way with words Paul became a guest columnist for his local paper, where he used this new medium to reach even more people. In 2004, Bard Lindeman, a noted journalist, and Paul became fast friends as the two collaborated on articles about Paul and his amazing ability to be an advocate for pulmonary fibrosis research. Paul passed away on Jan 17, 2005 AFTER enriching the lives of those he knew, and loved, along with the lives of scores he never met.

Actively encouraging family/friends to advocate for pulmonary fibrosis issues with local and state policy makers and/or the media (e.g., mobilizing local groups to write letters, send email, and/or contact media: newspapers/radio/tv/magazines) Providing support and information for other patients and families to advocate for pulmonary fibrosis issues (e.g., through their personal web site, listserv, newsletter). Advocating pulmonary fibrosis issues at the local, state, or national level (e.g., providing testimony for legislature, meeting with local representatives, publishing op-ed pieces in the newspaper) Organizing other groups or individuals to advocate for pulmonary fibrosis (e.g., conducting fundraisers/awareness-raisers to showcase pulmonary fibrosis)

The Story and Comments of Frank Bock, Ph. D.

PREDNISONE AND IT'S EFFECTS: OR WHY SHOULD I DIE FROM THE MEDICATION INSTEAD OF THE DISEASE?

by F. G. Bock, Ph. D. - 30 March 2001

From the beginning, starting with the diagnosis by Dr. Vendegna, (that I had Idiopathic Pulmonary Fibrosis), he informed me that there can be side effects from taking prednisone, and he listed what a few of those effects can be; such maladies as; (1) Diabetes (2) Decrease in the immune system (3) Swelling of the face and midsection; (4) Osteoporosis; (5) and a few other debilitating disorders. Basically he left the decision up to me concerning the prednisone. My response was that I would rather not since the litany of effects does not sound good. However, If the medication would alleviate the Fibrosis, I might be willing to take the chance. This all transpired in August, 1999. 1 began medication with only an inhalant - Flovent - but a month later, toward the end of September 1999, I took Dr Vee's advice, and began a regimen of taking prednisone once a day.

To read the complete story and comments click here

The Story of Ashley Gray

I feel like sharing my own story of the loss of my father to Pulmonary Fibrosis.  I hope you don't mind. The story is about my dad: Michael J. Gray...who died June 23, 2001, may peace be upon him.

I am a 24 year old girl in Chicago.  My dad died from IPF a little over a month ago. He was 58 years old. When he was diagnosed with this disease I did not want to know anything about it.  I didn't even want to admit that it was real.  I watched my dad decline rather quickly.  He slowly went into his own world, he became obsessed with knowing everything about IPF...and with his medication.  He was approved for interferon.....but unfortunately was on it less than a month before he died.  We have thousands of dollars worth of interferon in our fridge right now.  My dad had a portable oxygen tank back-pack thing.  He used it more and more frequently toward the end.  My mom told me that he even showered with it.  That broke my heart.  The doctors wanted my dad to get a transplant and he was going through the whole battery of tests.  He was doing fine....until the angiogram.  

They found blockage in 4 arteries.  They said he needed emergency quadruple bypass surgery.  That sent a huge shiver through all our spines.  Surgery??? For the heart???  All our energy was focused on his lungs.  In my heart I thought, "Don't do surgery, it will kill him....let him live a little longer."  Well, my father had surgery at 5 am on June 15th.  He worked until 9:30 PM the night before and didn't go to bed until 1:00 am.  I wonder if he was scared.  I wonder if he knew that he might not come back from  the hospital.  Lots of neighbors and family came over that night.  It bothered me...did they think he was going to die???  Well, he got through the surgery just fine.  They said his heart was as good as yours and mine.  When I saw him for the first time after surgery  it was Sunday afternoon.  I did not expect to see what I saw when I walked into his room in the ICU.  Tubes and machines everywhere.   

He was unconscious, paralyzed through medicine, and his hands were restrained.  I thought the surgery went fine???  I broke down....my heart told me that things were not going to be all right.  Doctors were hopeful...they said it was normal that his body would have a hard time recovering due to his pre-existing lung disease.  We just needed to give it time and let his body rest while the machine breathed for him.  I tried to believe them.  But I knew.  I started to pray for my dad...and I held his hand....and I talked to him.  I felt like that would be the last time I would ever talk to him face to face...even if his eyes were closed... and he was "somewhere else".  The doctors and nurses said that he knew we were there and it comforted him. 

That day I went home and I felt completely weird.  I felt like I had already lost my father.  I couldn't look at pictures of him...I couldn't look at his belongings.....and I cried every time I imagined him stuck in that ICU....unconscious...paralyzed....unable to do all the things that people do like: eat, breath, think, talk, see, move!  It was pure torture.  This went on for a week.  I only saw him one more time before he died.  It was a Wednesday afternoon, a sunny day.  They moved him into a private room in the ICU....and they had some music playing softly.  That made me feel better.  He loved music.  When I saw him at first...he looked thinner...more bloated in the face....and I wanted to scream...WAKE UP....GET BETTER....DAD.....WHERE ARE YOU???  I wanted the nurses and doctors to know that this was MY DAD....a vibrant man...who had a great sense of humor, was an amazing cook, and a dedicated father and husband. THIS is MY DAD HERE......but somehow he didn't look like my dad.  And he did seem to be ours at all....he belonged to the hospital...our role was crying, frightened family members...helpless....and terribly scared. 

My mother, grandmother and I took turns holding his hand and talking to him.  When it was time to go that day....something told me to kiss him.  I wanted to kiss his face but he had tubes...and his whole mouth was taped...and frankly he looked a little scary to me.  I didn't want to disgrace him....so I decided to bend down a little and picked up his hand as much as I could....and I kissed him goodbye.  I told him what I needed to say.  I told him I loved him and that he was a good father and that I learned so much from him.  And my mom was watching and crying.  That was the last time I ever saw my dad.  He died that Friday evening at 12:58 am.  I was not there.
  

Now I have decided to learn about IPF....I feel like I owe him that much. I had a chest X-ray done and a baseline pulmonary function test.  I knew that he wanted me to do that.  But I wish he also knew that I just got a new job....he would be so proud of me.  I wish he had another 20 years here.....I wish he could be alive and not suffering.  He had so many interests, so many talents.  I know that all I can do...is life my life in a way that will honor his memory, his integrity, his goodness.  Dad, I miss you so much.  I am sorry you suffered like that.  I hope you are proud of me.
Love,

Your Adoring Daughter

Thank you for reading my story.  If it helps one person to not feel so alone, then it was worth writing. You can contact me at: MissCG613@aol.com  Ashley Gray

Story of Mike Todd

Eugene Kevin Todd May 1943 – November 2003

 My father, Eugene Kevin Todd, passed away from Pulmonary Fibrosis this past November 19^th 2003.  I hope what I am about to share will help others whom have this terrible disease find the best help possible.

 I was 23 when my father passed away. He had just turned 60 years old   My father was suffering from Pulmonary Fibrosis for 2 years.  Doctors actually thought that he had it for eight years but it went undetected up until 2 years ago.  My father was an outside electrician, and from being around the toxic fumes it caused the disease to occur.  He worked outside for like 25 years, so after a while your body can’t fight the fumes any longer and it begins to take a toll on your organs. 

 The first doctor my father went to said that he would put my father on the list for a lung transplant.  The way the doctor explained it, sounded like that’s all my father had to do.  He didn’t know until recently that he had to go through a battery of tests.   This past October is when my father found out that he would have to be tested.  Then he went back to the first doctor and complained, and then still asked if he was on a waiting list, and the doctor said that he never put my father on the list because my father didn’t want to be on the list.  My father raised the roof on that doctor, and he screamed and yelled.  My father was ready to jump over the table and shoot the doctor.  The doctor never put him on the list!  A year and a half went by and we thought that my father was on the list for a transplant!  Why did this doctor do that to us?  It’s his fault that my father isn’t here today.  He is a specialist he is supposed to know what procedures to follow.  He never told my father that he had to go through tests until he found out from another specialist a year and a half later…

 The second doctor gave him a certain type of medicine, its called Azathioprine.  The doctor said that the medicine will stop the progression of the disease but it won’t cure what he has.   We were all happy especially my father, he thought that there may be less stress from what he has gone through.   But it didn’t help him, it made him worse.  He went from good, to worse within a matter of a few months from taking the medicine. 

 During the time he was on Azathioprine he had to start using liquid oxygen to help with his breathing.  But it didn’t seem to help very much at all.  The medicine that he was taking seemed to have made it too difficult for him to breath. 

 In the beginning of November my father was taken to Alexian Brothers Medical center because he was having a hard time breathing.  The doctors really didn’t do much for him besides kept him comfortable.  They said that he had an infection from a prior cold, and was trying to clear it up with drugs.  He stayed a total of 4 days then was transferred to Loyola University Medical Center where it would be his final days on Earth. 

 He was supposed to start the battery of tests the next day, but he was too weak from all the drugs he was taking from the other hospital.  So he spent a few days trying to make his body stronger.  While he was resting, he did take another cat scan of his body.  And of course the whole family was with him, praying that he makes it out of the hospital in one piece. 

 Tuesday Evening came around, and my family was waiting patently for the doctor to come in and start talking about when my father can start taking his tests. But the doctor said that from his cat scan, it would be impossible to do anything further because the IPF had progressed so far that it was too late. He broke my father’s heart when he found out that it was too late to do anything. My father kept asking the doctor questions about other medications that he read about on the internet, and the doctor kept shooting him down. Then my father would ask the doctor a question, and my father could barely hear anything because he had the oxygen tank running, so he asked the doctor to repeat himself, and the doctor got angry and snapped at my father. That happened twice during the conversation, and I was completely outraged.  After my father was done talking to him, I wanted to say that it was completely uncalled for, because he snapped at my father.  Don’t any of these doctors have people skills anymore?  They get paid so much; the least they could do is be a little bit more respectable than that.

 Sometimes I believe that my father gave up after hearing that response from the doctor.  Because that same night, he called my brother and me in the room to speak with us.  He told us that we need to stay strong and take care of our sisters and mother.  My brother and I broke down, and said that he wasn’t leaving us, and my father paused for a long time, then he said; “Look guys, us Catholics don’t ever say Goodbye, we only say See You Later.” Then the nurse came in and gave my father morphine because he was having trouble breathing.  Every ten minutes they were pumping him full of that stuff.   Then he fell asleep and never woke up.  He died the next day at 11:00 in the morning. 

 My father went through some terrible experiences with Doctors, so please if you or someone you love dearly has IPF make sure they have excellent doctors, because my father was misled, and by the time we tried to fix it, his life ended.  

 Thank you for listening to me, I feel a bit better now talking about my experience.  If anyone is going through the same thing, then feel free to email me at: 

 garacing@hotmail.com  Mike Todd