Profiles 

Personal Experiences with Pulmonary Fibrosis


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.

When the gardener’s rage was complete, he looked around and saw within the weeds his precious blossoms. He began to weep quietly, and suddenly began to cry out in great sobs for he was sorry for what he had done. He cried for the neglect of his garden which had always brought him such comfort. He cried because he felt he had so little time to repair the garden and he cried because he was afraid to leave the garden.

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.

Just then a cool autumn breeze blew the gardeners hat off. He felt a surge of anger as he pulled his plaid shirt more closely around him. He did not want time to pass. He wanted to keep this moment, with the bright sun on his face, feeling warm and happy in his garden. He did not like change. As he scowled the tiny blue belle spoke up. She raised her head and in a small but strong voice she said We can not stay in a moment forever but when we string moments together we create memories, and memories live forever in the hearts of those who love us. The gardener was moved by her words, but said nothing. After all what did a flower know of his sorrows? Then the proud lily spoke People leave a legacy in the thoughts of friends and loved ones, flowers leave seeds as their legacy. Take from your garden seeds of hope, and happiness and plant them in the hearts of all you meet. The gardener slowly rose, dusted off his knees and looked to the sky in silent prayer. He no longer felt angry, or sad. His heart felt content. He walked happily over to the shed, grabbed his gardening tools and set to work cultivating his beautiful garden with love. Early one fall morning the gardener meandered through his flower bed. A frost had left the last of the roses wilting sadly in the sun. Oh he thought if only seasons did not pass so quickly. The wind blew and as he held his cap to his head, he saw his breath in the crisp autumn air. He leaned heavily in his rake, his lips tightened and he thought breathe- humph! His eyebrows furrowed he remembered when breathing was something he took for granted. Now, well it didn’t hurt exactly, it was just so frustrating.

Sighing deeply he slowly knelt down next to the brilliant mums. Of all his flowers only the dazzling yellow and orange blossoms could tolerate the chill in the night air. They still stood tall and full, bright with life and color. The man smiled as he carefully tucked leaves around their base. He was preparing his beautiful friends for the long, cold winter to come. Winter-again the man wished he could stop time. The gardener leaned back on his heels and took out a handkerchief. He mopped his brow and coughed hard and deep. It amazed him how easily he tired now. As he went back to tucking his beloved plants in for a long rest- he listened- he could hear birds, cars, and a dog barking in the distance. The gardener could hear something else- his own heart beat, and a slight wheeze when he exhaled. Then as his shoulders slumped under his own exertion, he heard the tiny voice. He had heard it once before.

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.

The sun is so warm, he lies back on the warm earth, it envelopes him, like an embrace of an old friend, and he remembers.

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.

The bluebells no longer sang. The garden was very quiet indeed. And then in the stillness came a peculiar breeze. It was sweet and strong. It blew though out the garden like a melody. It touched each leaf, each petal. It seemed to sing of brighter days. The flowers began to hum. A tear rolled from Lily’s eye. Then they heard it. Memories live forever in the hearts of those who love you. The flowers at first felt overwhelming sadness; they missed their dear gardener. Then they began to speak in hushed tones. They spoke of times the gardener’s hat had flown off in a strong wind, and they laughed. They spoke of his strong protective hands, of happy times, of silly times, and they remembered how it felt to be happy.

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

 

      Howard Ng (1963-2007)

I’m Howard’s brother, Tim Ng, and this is how I remember him.  He was a truly remarkable person who made a positive impact on everyone he met.  Here are some of my recollections from growing up with him, as well as other memories shared by his friends and colleagues… 

Humble Beginnings

Howard was born in Hong Kong in 1963 to a relatively poor but hardworking family. Our dad labored in a factory and our mom held a sewing job. They couldn’t be around most of the time so Howard took on the responsibility at a young age to look after me and the rest of the family. So when I would get sick, it was Howard who took care of me. Life at home was tough too.  We had no toys and the whole family slept in a single room in a flat. The place was small and the dining table doubled as Howard’s bed. I’m sure it was not very comfortable and yet he never complained.

 Life in the United States

Just before Howard’s 12th birthday, our family immigrated to the United States in 1975. Despite a culture shock, somehow he easily made friends during the very first week at school.  It turned out that these friends would later become his lifelong buddies, whom he would still call/email whenever he had time.

In the states, Howard lived a normal life filled with a lot of American pop culture.  Much like other kids of that era, he had his weekly dose of television shows including: Speed Racer, Happy Days, Star Trek and Get Smart. His first favorite movie was the original Star Wars. He must have watched it a dozen times. He could recite every line, even the ones from the likes of Jabba the Hut and Greedo (of course in their native language). I’m so thankful that he didn’t make me camp overnight with him to watch Episode I!

Howard’s interests also included music. Although we have no musical genes in the family, he liked to strum a little Led Zeppelin with his acoustics guitar, and he actually played a halfway decent version of Unchained Melody on his electric piano. Although he talked a lot about the Cookies, (an American R&B girl group in the 1950s to 1960s), I’m sure his favorite singer was Andy Lau (a popular Chinese pop star and actor) since he bought all his CD’s, went to his concerts, and later on created a personal web page dedicated to the guy. However, he also liked Aaron Kwok (another Chinese pop star), and fashioned haircut after him for a while. 

An Avid Sportsman

Howard was very active in sports. Just like every other “HK” kid, he could play a mean game of ping-pong. But he also joined the tennis team in high school. In fact, he was very proud of his Jimmy Conner double backhand, and a flat forehand passing shot that faded away from the opposing player. We often went to the park and challenged others to a friendly pickup game of doubles. We used to call ourselves the Malachi Brothers; and when we were both playing net, that strategy was referred to as the Malachi wall.  Nothing could pass us - at least that’s what we told ourselves.

In addition to tennis, Howard and I liked to play some pickup games on the beach volleyball court. He used to workout quite a bit and didn’t mind showing off some of the fruits of his labor there. On a slow day, we just peppered (setting, passing and spiking volleyball drills) for hours. He enjoyed a good Smith/Stoklos and Kiraly/Steffes rivalry! We were pretty excited one time when we recorded ourselves on TV during an NBC broadcast of an AVP event at Hermosa Beach. Howard also liked roller-blading and biking at the beach strand, or camping while listening to songs from Danny Chan (another Chinese singer).

Skiing was another one of Howard’s all time favorites. Before moving out of our parents’ house, a spur of the moment knock on the door of my room at 5am on a Saturday morning with the words, “Let’s go!” meant the we would inevitably be speeding down Interstate 10 to Snow Summit, Mountain High, or Mount Baldy. There were also countless trips to Mammoth and Lake Tahoe with his friends from school and work. Many stories were exchanged during the rides up there. Let us not forget that Howard was also an avid console gamer. If he was not casting spells with Yuna on Final Fantasy, he’d be blasting the Covenant Warriors on Halo. His alter ego online was FOBiwan Kenobi with a sideways Ying-Yang logo.

Recently though, he was pretty much addicted to golf. He would answer his phone with the words, “Which hole,” and could name the top ten LPGA players from Korea. He claimed that it was peer pressure that drove him into the sport. All his friends ever talked about at work was golf, according to Howard. He modeled his loopy swing after Jim Furyk. Besides going to the driving range regularly, he would setup a little practice swing area at his house to perfect his swing. He would constantly go on EBay to bid on a Hippo fairway wood. I witnessed one of his best holes at an annual golf tournament held by the company he worked for. We were playing in a scramble format and he was the only player from our foursome who hit the green on a 190 yard par three with a 5 wood where the green was protected on the left by OB and a water hazard on the right. He even putted first and drained a 12-foot birdie putt all by himself and later found out he missed the closest-to-the-pin contest by only a foot.

A Successful Professional Life

After graduating and getting his PhD from UCLA, Howard went to work for Syska Hennessy Group in 1987 where he stayed for 20 years. He started off as an electrical engineer and eventually became the firm’s IT Network Administrator. At Syska, Hennessy, he found security and camaraderie. He was well loved by his peers and he returned that love with dedication, enthusiasm and positive energy. Had not Pulmonary Fibrosis taken him away, he probably would have been there for another 20 years - and maybe another 20 years after that.

His Beloved Wife

Howard was married in July 2004 to his beloved wife JoJo, my sister-in-law. Although their time together was short, it was by far the happiest period of his life. They were inseparable and those around them were envious of their mutual admiration.  As one of Howard’s colleagues recollected, “His face lit up every time he would talk about JoJo.”  Another co-worker also remembered that Howard would always eat the lunch that JoJo prepared for him regardless of the many lunch invitations he received to eat out.  He didn’t want to waste the lunch that his wife had prepared for him.

Pulmonary Fibrosis Claims Howard

This disease crept up on Howard rather suddenly.  It all began when Howard noticed a small rash on his hands and elbows around September 2006, approximately a couple of weeks after he fell down and scraped his arms and legs while rollerblading by the beach.  His initial thought was, he might have caught some bacteria or virus from the cuts, and reasoned to go see a doctor if they didn’t go away after a while.  However, this went on for a few weeks and by October 2006 he was complaining that he felt a lot more tired than he used to.  The rash on his hands was still there and his joints were starting to hurt him when he made a fist.  We told him to take a few days off and rest and go see a doctor. Howard’s general doctor and subsequently the specialists he visited did an array of blood and other tests on him.  If I remember correctly, it took them about a month to do multiple different diagnostic tests to finally tell him that his autoimmune system was attacking his own body, and that he had to start taking steroids to suppress his immune system.  He actually went to the hospital for tests and observations and went on disability for a few weeks.  As shocking and disappointing this news was, it was still not too much cause for alarm.  The doctors had a treatment plan and there were tons of articles on the internet about other people who have had this disease. By December of 2006, Howard caught pneumonia and was hospitalized for a few days.  After he was released, he started recovering and discussed lowering the dosage of steroids with his doctor. However, complications occurred that caused Howard to relapse and get worse.  By the second week of January 2007, he started to get short of breath again.   Howard was concerned that either the lowering of the drug dosage or the return of pneumonia may have been the reasons for his symptoms.  As a result, he returned to the hospital around January 13, 2007.  It was then when they informed him that his lungs were being damaged at a much faster pace than expected, and that he may need a lung transplant.  At that point, he started to use oxygen to assist him in breathing occasionally. Howard normally would not want to impose on anyone.  I remember that one of his colleagues, Shervan Shah, visited him at the hospital a few times, and on January 24th Howard called him at work and asked “when are you coming to visit me again?”  It was a very busy day and Shervan told him that he would come by with his wife that Friday or Saturday to spend some time with him.  After the call, Shervan could not concentrate on work as he realized that was the first time that Howard actually asked for him.  Consequently, he left in the middle of the workday and headed to the hospital.  He surprised Howard while he was having lunch with his dedicated wife JoJo, who was there taking care of him as usual.  When she walked out for a moment, Howard told Shervan,” I don’t know what I have done to deserve her.  I can’t imagine being here without her help.”  They talked for a while and Howard actually tried to cheer Shervan up by saying, “don’t worry, I will get a lung transplant and will be as good as new in no time! “ Ironically, the day of Shervan’s hospital visit, was the last day that Howard was conscious.  That night, his breathing became worse and they had to put him on a ventilator.  He remained on the ventilator for seven days unconscious.  The following Wednesday on January 31st, 2007 he was removed from the device and quietly passed away in ICU with his friends and family all around him. During his last months, for the most part, Howard had a great spirit.  When concerned friends approached him about his prolonged sickness, he would just play it down and tell them it was no big deal, and comfort them by saying he would be okay soon.  As a matter of fact, only a handful of people knew how sick he really was.  It was only on the last day of Shervan’s visit with him that he stated, “it is OK to tell anyone who asks about me and how sick I really am because they will start wondering why Howard has lost so much weight. In fact I may have to come back to work using an oxygen tank.”  He believed until the last day, he was going to eventually beat the odds and make it through OK.  He never lost hope.  But the disease won and took Howard’s life on January 31, 2007. 

Saying Goodbye

I’ve already shared some of my happier moments growing up with my brother, Howard.  However, there were more memories recollected by others. There were so many past/present colleagues and friends that attended Howard’s funeral, which only underscores how loved he was. At his service, many great stories and sentiments were shared about the type of person Howard was, amidst many teary-eyed mourners.  Smart, dedicated, determined, curious, helpful, friendly, sweet, energetic, faithful, selfless, trusted, happy and easy going were some of the words mentioned.  He was known for helping many with their computer issues, and he gladly and graciously helped everyone and anyone who’d ask. According to his coworkers…He embarked on any challenge enthusiastically (often with a bounce in his step) until a problem was solved, figuring anything out that was thrown at him.  Despite keeping a hectic schedule himself, his door was always open for those who needed him.  No one can say that they ever really saw him in a bad mood.  And that was truly remarkable. Howard was always responsive, helpful, and patient every day - and during days that were challenging, many of his co-workers would find inspiration in Howard’s “can do” attitude. He was instrumental in bringing out the best in others. In fact, there were some who went to Howard to have some of his energy rub off on them.  His associates also remember Howard’s boundless energy, which can be best symbolized by the yellow coffee mug with a smiling face, which he always had in his hand.  Many concur he was indeed a caffeine junkie.  But I think many also agree that his positive disposition was all natural, and not coffee induced. Currently, Syska Hennessy continually pays tribute to Howard through the ACE Awards given out at their monthly team meetings.  I was told that the ACE Award signifies excellence in work performance above and beyond the call of duty.  It was renamed as the “Yellow Cup” Award, after Howard’s much loved yellow coffee mug.  Through this symbol, Syska team members are reminded of Howard’s “can do” attitude and his dedication to greatness. Other gestures Syska has done in loving memory of Howard include renaming their annual employee golf Tournament the Howard Ng Classic, as well as donating a considerable sum to his memorial fund with the Pulmonary Fibrosis Organization. Those of us who had the fortune of knowing Howard would understand how much he’s been missed. At any given instant, something could suddenly trigger a thread of memory. Such memories are invaluable and at least for me, I try to hold on to them. To the rest of you who never knew Howard, I apologize because I do not possess the ability to introduce Howard to you with words which are deserving of his noble character. Yet I hope to have convinced you that the world has lost a great citizen and human being.

 

Jorge C. Perez (Tony Perez) February 22, 1937- September 10, 2007

My husband Jorge C. Perez had a quadruple heart bypass surgery 10 years ago at RWJ HOSP., NJ. All his siblings underwent the same surgery before him. So the focus of all his check-up was his heart. His blood works were ok, EKG, Stress test were fine. For the last 3 years he was complaining of being forgetful, getting out of breath & had seen him passing out for few seconds and it’s happening when he’s eating. We moved to Geneva Illinois from Dec 2003 - September 2006. Every now and then Jorge complained of getting out of breath.Dr Ganger had done Endoscopy & Colonoscopy at Delnor Hospital found slight inflammation told not to worry about, colonoscopy was ok. His internist Dr. Hamada had ordered a chest x-ray in 2004 and showed interstitial lung disease ,but then nothing was done and we were not aware of this disease.

Again, the focus was his heart. (Cardiologist) Dr. Park was seen and Dr White Ultra sound revealed about 69% blockage on the left carotid and about 30% on the right carotid artery. His internist had order a holster monitor of the heart because of the case of passing out, but then, test was negative. Finally, on 2006 he was referred to see a pulmonologist, and pulmonary lung function test was done and showed abnormalities& was given an inhaler.

October of 2006 we moved back to NJ. Jorge went to see a pulmonologist Dr, Harangozo on April 2007, Pulmonary Lung function showed worse than 2006. He was told to do CT Scan. But he did not do it right away, came back for a follow up visit in June, pulmonary lung function test was done and showed worse than April within a span of 2 months. CT scan was done June 6th and showed pulmonary fibrosis in both lobe of his lungs. Dr. Harangozo’s office had scheduled my husband to see Dr. Langenfeld for a lung biopsy. My husband was admitted July 5th and lung biopsy was performed by Dr Langenfeld.. My husband does not want to do this biopsy, but then Dr. Harangozo said she does not know how to treat him if he does not go thru a lung biopsy. With the hope that he will get better he went along with the procedure, after a week he became weak and debilitated in the telemetry RWJ. He suffered duodenum bleeding and heparin was stopped. July 27th was the last time I talked to him he was brought to the ICU , was put with the ventilator, he suffered a stroke the next day at the ICU, went thru all the procedures pie line, Traechostomy , peg tube tolerated all of these. Finally September 10th, passed away.

Looking back, what I know now that pulmonary fibrosis has no cure. I can’t bring my husband back, but I felt he should have not gone through a biopsy, considering his age of 70 years old, maybe having a unit of oxygen at home, use as needed basis when he’s getting out of breath. My husband was physically active; he played tennis indoor during winter time and outdoor in the summer time, as well doing distance learning at Washington School of Law. We had traveled together and practically touch the six continents, love to see Broadway shows, opera& concerts. Full of life, suspense and excitement. How did it happen so fast? From July 5th when he was admitted for a lung biopsy, he did not get out of Robert Wood Johnson Hospital in New Brunswick ,NJ. I am sad and had a difficult time accepting he‘s gone forever. Pulmonary Fibrosis awareness should be in place, it’s critical and important that everyone should be educated on this disease. I hope a cure will be found in the near future.

Carmelita (Millet) Ventura-Perez
 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

Montie Jane Sievers

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 19th. 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.

Richard N. Young

Approximately 3 years ago, Rich noticed he was having some trouble breathing, after  trip with his daughter Lisa  to China, he was diagnosed with IPF.  The next three years he had steady deterioration.  He was completely fit and healthy and was in his doctors eyes the ideal candidate for a lung transplant.  He worked with the team from Stanford University and was sent to the top of the list as soon as all of the tests were completed.  He received a single lung transplant in December.  Remarkably, he was allowed to go home only two weeks later where he spent a month recovering, but able to get around without any oxygen.  He started having problems near the end of January and was readmitted to the hospital.  They could not determine what went wrong.  Hopefully we can help the research so that others have a better chance. 


The family requests that expressions of sympathy take the form of contributions to the Pulmonary Fibrosis Foundation, Richard N. Young Memorial Fund, 1332 N. Halsted St. Suite 201, Chicago, IL  60622 

Paul Clayton

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 of John Wade

This is a document I never envisioned I’d ever be creating. I provide this for your review, recommendations and comments. Believe, don’t believe--everything is ATTITUDE! Your choice--your consequence. As Shakespeare said,” There is nothing neither good or bad, but thinking makes it so.” Ponder that.

  My name is John. I am 46 years young. I am a special education teacher of almost twenty years working with the most severely emotionally involved students. Recently (3-7-00) diagnosed with end stage IPF-Idiopathic Pulmonary Fibrosis! UIP--Usual Interstitial Pnemonitis. The prognosis isn’t good- the alternative is worse. Adversity-­I’ve chosen it to be my friend and mentor. I’m learning so much from this life changing experience.  

So, here’s my story. I am the proud father of two beautiful adult children and soon to be a grandfather (12-7-00). I have been married to my soul mate for 23 years, known her for 31. We’re high school sweethearts----we’re still sweethearts!! The key to my positive mental attitude and perseverance is the love and support of my ‘care givers’. This condition, experience, is far harder on them then I. I pray for their strength and patience. Strength to endure the roller coaster of my emotions, moods, and challenges this disease provides and patience to process the wealth of knowledge this presents us. The strength of prayer, positive mental attitude, exercise are all instrumental in our daily routine of dealing with the realities of this condition.

 To read the complete story click here

 

William “Bill” Coffey 1953 - 2001

Bill has done so many things in his lifetime it is hard to know where to start. Bill was the son of James Coffey & Sarah (McGarvey) Coffey and he was born in Brooklyn New York. His mother died when he was young so he spent most of his summers in New Hampshire with his sister Mary and her family. He loved the mountains and the country life so he moved to New Hampshire full time. Bill was predeceased by a brother Edward who died in Vietnam, and a brother James who died in a car accident. He is survived by a son Shaun-of NH, his sisters Mrs. Donald (Mary) Crooker- of NH, and Mrs. Robert (Theresa) Fornatale - of NJ, and a brother Daniel Coffey- of NY. Bill also had many nieces, nephews, cousins, and his number one supporters and best friends to the end the Peterson family as well as a great many friends in many states.

 He made his home in Colorado Springs and was very involved with his church, Woodman Valley Chapel, where he served as an usher every Sunday. Bill had a great sense of humor and the fact that he died on April Fools Day would really have made some great joke material for him. He was an avid outdoorsman and would do anything for a friend. He served in the U.S.A.F. where he fine-tuned his love of airplanes and skydiving which has followed him through his lifetime. Bill just recently made his 500’Th jump. He was also a pilot and a Captain in the Civil Air Patrol. Bill went to the Police Academy and was a Private Investigator in New Hampshire. He was a salesman and traveled throughout Colorado doing business and making many friends along the way. 

Bill was diagnosed with Progressive Interstitial Lung Disease (Idiopathic Pulmonary Fibrosis) in January of 2000 and has fought this disease with courage and optimism from the onset. He started an experimental Interferon drug program the beginning of this year. He donated his body to research at the National Jewish Medical & Research Center in Denver and his corneas have been transplanted to a blind person. He had been accepted for a lung transplant but refused opting for quality of life over quantity due to his body's poor reactions to prednisone, the anti-rejection drug. 

James "Jim" Cook 1927 - 2002

 Jim has lived a long life full of adventure and travel. He loved the open road and would drive across the country instead of fly. He took his last trip to Pennsylvania from California in 2000. He loved to drive Volvos. He put at least 300,000 on each of the several he owned. Jim was born in Pennsylvania, went to Germany in the air force for one year after the war and moved to California when he was in his early 20's. He met his wife, Reta, at a radio control model airplane contest in Kansas when he was in his late 20's. He was a draftsman for Ampex. He worked there for many years and then went to work as a design engineer at Lockheed. He retired from Lockheed when he was in his late 50's and then worked off and on after that. 

He loved his church. Started going in 1961 and went the rest of his life. Knew most people by name and would often hug good friends upon greeting them. Loved being around active people and would go weekly to the Senior outings. His grandsons lived with him and he loved them very much. He loved his yearly trips to Maui, Hawaii - he had a timeshare and used it every year since 1983. He loved to hike and walk on the beach. He planned and looked forward to going next summer in 2002. But of course it will never happen. He also loved Yosemite, in the beautiful Sierras of California. He had been hiking there for over 30 years. 

He got pneumonia in May. In August he was diagnosed with Idiopathic Pulmonary Fibrosis. His doctor told him that since he was healthy and there was only a small spot on his lower lung to come back in 3 months and they would check it. Of course by then it was in a lung and a half was full of the disease, the high dose of prednisone almost killed him because of his violent reaction and the doctor said there was no other options that could stop its progress at this stage. My father was optimistic that he was going to get better and said he was not dying because doctor was doing all he could to save him. By this time he wasn't thinking clearly and I couldn't offer any advice. He was totally dependant on his doctor for all advice - which was "this is your only option, the side effects of other drugs are worse". He was never given oxygen until 2 weeks before his death. At that point he was on 6 liters a day. I told him he needed it before that but he told me the doctor didn't tell him that and he should know. I am angry at his lack of treatment through lack of knowledge by his doctor. I have found many options for this disease now. It does kill quickly, but the quality of life and comfort options are abundant. He died February 3, 2002 - 5 months after diagnosis. 

He is survived by his wife Reta, his son Jim, his daughter Janet, his grandsons Sean, Steven & Buck.

Eugene Joseph Dominiak  July 2, 1922---July 1, 2003  

I can still hardly believe that Dad has left us even when I write the date of death.  It looks like some one else’s statistic.  My father had a very difficult life, but always found the good in everything that he could, and that’s what he always choose to remember.  His family, due to parental health issues, was split up when he was eleven.  He and his brother went to live with an aunt, her father and brother.  My Dad’s sister and two brothers were sent to an orphanage.  They did not see each other again until they were in their mid twenties.  Dad served in Europe and North Africa during WWII for four long and lonely years.  He was asked to join the Tenth Mountain Division while in Europe because of his athleticism and leadership skills.  At 19 he was a sergeant in charge of 20-30 men at a time.  About nine months before the war ended, my father’s brother was killed in Europe about two miles from where my Dad was fighting.  That was a terrible tragedy for my father.  It was the brother he grew up with, and they were very close.  It also was the one death that my Dad never was able to put behind him.  After the war ended, my Dad came back to the states and met my Mother, who is in the other two pictures next to Dad.  They had four children.  Now, they have 5 grandchildren and 1 great grandchild.   Dad was an electrician for the City of Milwaukee for over 30 years.  During work one day, he was hit by a drunk driver as he was carrying a wooden barricade to block off a work area.  He suffered many injuries, which included the amputation of his lower leg, but surgeons managed to reattach it, and he did regain use of that leg.  After that he suffered a serious depression that left him unable to concentrate enough to do his job.  He received full disability a short time later.  Dad at 54 lost the independence that so many people strive to keep well into later years.  His mental status did improve over the next five to ten years, but it took a lot of work and care.   After that he developed some carotid artery disease, which was surgically repaired.  Then came prostate cancer and the eight weeks of daily radiation, which he also survived.  In his early seventies, the herniation of three lumbar disks from years of hard work required him to use a walker.  From his inactivity due to all of his injuries, he developed diabetes.  This had an effect on his feet, eyesight, and kidneys.  

However, the disease that eventually took his life was the pulmonary fibrosis.  My Dad was a fighter, but this was one disease that he just couldn’t beat.  He did his best to get some quality of life during this final stage.  My Dad loved to travel with his children and grandchildren, no matter what or where.  After being in the 10th Mountain Division, he always loved going to any mountain range.  He traveled to the Rockies, Grand Canyon and the Black Hills with his wife and children.   My Dad was a great historian about his family, world history, and politics right up until the day he died.  He loved his family and was very supportive of everything that they did or tried to do.  In the last few years, he had been attending musicals with his wife and great grandchild at the Fireside in SE Wisconsin.  He enjoyed those times away so much, especially because they stayed at a hotel and could watch their great-grandchild swim in the hotel pool.  We think also, because he could forget for a short time all of his medical problems.   Our Dad was a courageous and great man in our eyes.  He is someone that everyone loved and got along with.   He will never be forgotten, and we will do everything we can to beat this breath-taking disease.  We all miss him terribly, but his suffering is over, and he is at peace.  We love you, Dad!  Dad is survived by his wife, Gloria, children: Holly, George, Jeanette and Michael, grandchildren: Jenny, George, Jarrod, Jordan, and great-grandchild: Aaron, and a sister: Gertrude along with other family and friends. 

DALE G. BAZILL 1937-2001  

Dale was born July 26,1937, the son of Dale S. and Edith G. Bazill. He grew up in Bradford, a small railroad town in southwest Ohio. As a child, he was curious about what made things work by taking them apart to find out. As a young teen he repaired radios for neighbors and friends. It was not surprising that he became an engineer and graduated from General Motors Institute in Flint Michigan in 1960.  

As both a mechanical and electrical engineer, there didn’t seem there was anything he couldn’t repair, design or build. His talents were quite amazing! He even designed and built his family’s home in 1979. He had a long and interesting career from his days at General Motors where he developed and patented a ring weld process to fully seal ball joint assemblies. Later, he founded Electronic Technology Company (ETC) offering professional engineering services in design and programming.   He met his wife, Joy at General Motors while doing his co-op program. The couple married in 1961. They had three children and took many family vacation trips together including the Hawaiian Islands in 1978. Dale had many interests including bass fishing. He went on many fishing trips with his son, Mark. He always wanted to get a bass boat, but due to other necessities and putting three children through college, it was always on the back burner. Flying radio-controlled airplanes was another interest. Of course, he built his own and he belonged to the Wing Masters Flying Club.  

The disease began as a dry cough. It was persistent for several years and the doctors told him that he had chronic bronchitis. Eventually, he was hospitalized where after many test, he was diagnosed that he had "Idiopathic Pulmonary Fibrosis". It was already in the advanced stage and he was put on oxygen. Since both of his lungs were so badly scarred, he was not a candidate for a transplant. Needless to say, we were devastated, but he was determined to fight the disease and continue to live his life to the fullest (which he did). Dale also underwent two surgeries for knee replacement. Because it was difficult to breathe, he used a battery-powered cart to get around.  Even through all of this, he never gave up and he got his deserving, long awaited bass boat. Although it was a struggle for him, he had two years of enjoyment from it. He took his 4-year-old grandson for a ride, just two weeks before he passed away. While on this boat ride, he told his daughter, "The thing that bothers me the most, about this disease, is the fact that I’ll never see my grandchildren grow up". He loved them so. 

He was survived by his wife Joy, two daughters: Bonnie and Jill, a son: Mark, five grandchildren: Troy, Benjamin, Lauren and 2 grandsons he didn’t live to see Jonathan and his namesake Luke Dale. Oh, how proud he would have been! A brother Jerry, a sister Diana and a mother-in-law Mary Jane also survived him. 

This extraordinary courageous man is dearly missed, but he will live in our hearts forever. 

George E. Pintner

My dad was a kind, loving, funny, hard working christian man who loved God.  A wonderful husband to my mom for almost 53 years; the BEST dad  to  me, his daughter and only child for 46 years; a loving, fun  father-in-law to my husband; a loving uncle, etc...  I could go on and on, but you get the picture.  He was very SPECIAL to everyone he came into contact with.

On January 10, 2003, just 5 days after his 77th  birthday, this horrible, frustrating, dreadful disease stripped him  from our lives.  It took 2 years to actually kill him, but the battle  we all fought during that time was awful!!    We all 4 waged war  against this unknown enemy (my Dad, my mom, Opal, me, and my husband  Lynn), which still has not been diagnosed by anyone but me, Debbie  Foster, his daughter.  The doctors just said he had COPD.  His  cardiologist said "it's just those lungs"; his pulmonary doctor would  say "it's just that old worn out heart", while all of us just bounced  back
and forth like a tennis ball.  In the meantime, both of them were adding more medications, changing medications, raising the dosage, lowering the dosage, putting him on a nebulizer 4 times a day, adding pure liquid oxygen, and nothing seemed to help, and day by day all of  his family and friends sadly, helplessly watched this vivacious,  outdoor, active 75 year old become increasingly  helpless and dependent  on his closest loved ones to do everything for him.  Eventually this  loving man
who enjoyed the outdoors and  camping out, going to family  functions became completely house-bound or hospital bound.

You say,  good grief, the man was 77 years old when he died!  That's old! He's  had a good life.   You can't keep him forever.  I know that.  But  consider that his parents both lived  to be 89.  Now I knew that with  two triple bypasses and  lung surgery (they tore his lung during the  second bypass, and had to do surgery a week after the second bypass to repair it) that more than likely he was not going to live to be his  parents age, but at 75 he as tearing up the world until this disease  literally stopped him in his tracks overnight.  At 75, he would get up and do his cardiac rehab exercises posted on the back of the bedroom door, walk the treadmill, ride the exercise bicycle, the regular bicycle, get on top of a 37 foot motor home and wash it, mow his yard  as well as the neighbor's yard across the street, all in one day.  At  Christmas, he and 1 neighbor would put up the luminaries for the whole  street.  He also took older friends for doctor appointments in Dallas,  TX which was an hour and a half drive; go visit anyone who was sick  and  in the hospital, and was ALWAYS ready to help someone else in need.
 Did he deserve to die just because he was 77.  I think not!  He began  to faint on campouts, and we knew that they had to sell their beautiful  motorhome they had barely used (no they are not some old rich folks  with loads of money), so mom, Lynn and I unloaded the motorhome while  dad watched helplessly, not able to do a thing but sit and watch.  We  all cried as we unloaded and cleaned the motorhome.

The saddest thing for me as his daughter, was not selling the motorhome, but being forced  to realize that whatever had happened to my dad was not going to get better. My parents both worked in factories all their lives, doing  manual labor, inhaling metal dust, chemicals: mek, naptha, and others
 as well  as tons of second hand cigarette smoke.  One day I took my  mom  to an appointment at the University of Texas Southwestern Medical  School in Dallas, Texas.  The appointment was in the biomedical  technology building.  There were  2 publications laying on the table:  one was about the foundation, and the other was about all the diseases  they were currently doing research on.  One article read "Out of Air".  I started reading it and it matched my dad's illness to a "T".  This  was in May 2003, after his death in January 2003.  There, I had my  answer that I had struggled so hard to find before my very eyes.  Too  late to help my dad, but my dad is now in a better place, and at
peace; not struggling to stay alive for all of us.  He's in heaven with God.

Currently, I'm trying to get his medical records entered into the  study  at U T Southwestern Medical School, and get my mom enrolled now. It's  too late for him, but it's not too late to help my mom hopefully. She  worked at the same aircraft plant 12 years longer than he did, also  had  an injury to a lung caused by a healthcare  professional, inhaled  metal dust longer, and inhaled tons of second hand smoke for a longer period  of time.  If we can't help her, my hope is that her being in a study
 will help the doctors and nurses find a cure or at least something  that  will improve the life of someone suffering with pulmonary fibrosis and keep any other family from going through what we went through.  If that can be accomplished  then  a goal has been achieved.  This disease is
 cruel, and has to be stopped as soon as possible.

 In Loving Memory of My Dad, George Pittner
 Debbie Foster - Benbrook, Texas   September 26, 2003

 

J. Tony Frix

In Loving Memory
June 21, 1951 - February 3, 2004

I still can’t believe he is gone.
He was the kindest and most generous man I have ever known.

We dated for 3 years and married on his birthday in 1986. We had 17 wonderful years together. I was never able to have children but we shared our love with 13 foster children altogether. My husband was a 4th Grade Special Education teacher. He had been teaching for over 25 years. He also pastored Bethel Baptist Church where I still attend.
He was always so busy and never took time for himself. He was so loved by myself, his students and his congregation.

He became ill on Christmas school break in 2003.
The doctors thought it was pneumonia, but he had the beginning of an extremely rare form of Pulmonary Fibrosis and the Lord took him home on 2/3/04.

I know I’m a minister’s wife and I am trying to accept the Lord’s will but I miss
him so much. He was only 52.His students and our congregation are still
trying to recover from this loss.

To know my husband was to love his kind smile and generous spirit. I have seen him go and help others and myself when he was exhausted himself. I have seen him give time and money to others because they needed it. He and I sang in a gospel trio and I can’ t hardly bring myself to sing a note now. Please pray for me, his students and our church that we would be able to walk in the courageous steps he took and to have his loving kindness to show others.

His loving wife, Denise

Obenell Bass Westbrook April 20, 1923 - August 15, 2002

Obenell (pronounced O-b-nell) Bass Westbrook. Born in Sampson County, North Carolina in 1923. Loved life! Loved God, her family, cooking and gardening. The cooking and gardening would probably be a toss up. She loved to cook for her family. All meals were full course. And flowers; boy did she love to have her hands in the dirt. She was up by 5:00 a.m. and busy all day long. She was devoted to her husband, Marvin, of 56 years. Her children were her joy and her grandchildren were her double joy. She would always say she was “perished” to see them. She couldn’t get enough hugs and kisses. She was full of encouragement. Whatever was going on in our lives, no matter how we felt, she would always tell us things would get better. She would always have an encouraging word. She would tell us to put it in God’s hands. That’s what she did with her disease.

This is in memory of our mom, grandma “Obe 1”, wife, sister, aunt “Nellie” and friend, who passed away August 15, 2002, at the age of 79, after a courageous battle with Idiopathic Pulmonary Fibrosis. Her symptoms started a few years earlier with chronic coughing, shortness of breath, weight loss. There were numerous trips to the doctor for tests with no specific results. She was finally sent to a Pulmonary specialists out of town. After further testing and research, she was finally diagnosed with Idiopathic Pulmonary Fibrosis. Her family had never heard of this disease. People would ask “did she smoke?“ No, she was not a smoker. We wondered and asked the doctor if working in a sewing factory and breathing in the dust material for over 30 years could cause this disease. It would never be determined. The time between final diagnosis until her death was about 15 months. She was placed on prednisone (steroids) and oxygen as needed for treatment. Both of these gave her a better quality of life. The prednisone was adjusted periodically and oxygen soon became 24 hrs. a day. Her appetite remained good throughout her illness and the prednisone increased her weight gain. Her life as she and her family knew it would eventually consist of no more cooking, no more gardening, no more going to church, no more picking up her grandchildren. Her husband would now take on the responsibility of caring for her. She would endure a collapsed lung and trips to the hospital. Her days would be lived between a chair, wheelchair and bed. She battled to breathe every time she moved. Just being moved from a chair to the wheelchair would be a discouraging battle for air. Fans were positioned around her to keep air blowing on her. She said this helped her breathe and feel better. Friends would come to visit and probably couldn’t understand how sick she really was. But spending a day with her; helping her from chair to wheelchair or wheelchair to bed while struggling to breathe, would be a dramatic experience that was heart wrenching. She never complained. She always told us she would get better. She would sit in her chair, looking out the door at her flowers and would tell us all the things she needed to do when she was well. This disease took life away from her. The life that she lived, especially her fight and desire to live during her illness, continues to be a source of encouragement and blessing to myself, my father Marvin, my brother Frankie, my sister Martha and our entire family. We share her personal fight so that others will see a face and know another person that was stricken with this lung disease that not many people know about. With continued shared personal accounts of those who have suffered, we can get the word out and continue to produce funding and research for a cure.

I miss you mom

Sherry W. Carper 

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 19th 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

Hi my name is Leticia Luevano and I have lived in San Antonio , TX all of my life.

I am the oldest of 2 children.  I have been a member of St. Matthew’s for 8 years but never actively involved with any of the Church organizations until June of this year because at that time I had lost so much time with my fiancé then boyfriend. I did not have the time to devote to make our relationship blossom; until my parents received the Bell Ringer in which there was a description of YC3 Young Adult Christian Community Group ages 18-40.  I told my then boyfriend that we should look into this to see what it is all about because we need to do something to bring us closer to the Lord and to each other.  This is where my story begins.  In this group they were getting ready to plan for the retreat so my fiancé and I volunteered to help out and the topic I chose was how I cope with an unexpected change (accepting change).

 My first experience coping with an unexpected change came in 1987 when as an 18 year old I had to choose between my college education and getting a job to support my family so that we would not loose our home, have food to eat, water to drink and bathe, electricity to see what we were eating.  In the end, I gave up my dream of pursuing my education and a teaching degree to support my family.  See, my dad had a stroke that year and stopped working.  My mom that year was ready to retire but choose not to because she saw that I needed help. My brother who is 3 years younger than me could not or wouldn’t help me with the bills.  During this time I continued working to help provide for my family and made sure we had to necessities to survive. Then in December 1993 my dad had a heart attack and he had to have quadruple bypass surgery.

 My life took yet another unexpected change when in 2003 my mom was diagnosed with Pulmonary Fibrosis of the Lungs.  I had heard of this disease before, because my mom’s father had this disease at the time of his death in 1984. I was helping my mom care for my dad all this time, but in the end I was caring for the both of them.  I did the everyday things that my mom could no longer do.  I saw her go from a healthy, stocky woman to a skeleton being confined to the recliner.