My husband Bill is in the end stages of pulmonary fibrosis, a lung disease in which the air sacs slowly turn to fibrous tissue and lose the ability to take in oxygen, eventually causing death by suffocation. This is our story of our journey through the disease. We are telling it in the hope that others may learn from our experiences. There is encouragement in knowing that one is not alone in such a journey. By sharing experiences, we can support one another and perhaps lift some of the burdens of confusion and frustration that come with living with a terminal illness.
Our journey "officially" began in August 2000. Looking back, we can point to numerous instances that were related to the pulmonary fibrosis but were misdiagnosed or ignored by the medical community. One such instance occurred in March 2000 when Bill had what appeared to be a viral infection accompanied by chest pains and shortness of breath. The emergency room doctors diagnosed it as bacterial pneumonia. They could find no signs of pneumonia in his blood, but the cloudy lung x-ray led to the conclusion that he must have pneumonia. To their credit, he did improve after receiving intravenous antibiotics.
Doctors have been unwilling or unable to tell us what Bill's prognosis may be. All they can tell us is that he has outlived the expectations for someone with PF. Most people survive 3 to 5 years after diagnosis and they spend a portion of that time on oxygen. It is now 5 years since Bill's official diagnosis and he is still not on oxygen.
Bill is 90 years old, which in itself, doctors find remarkable. He is a highly decorated veteran of World War II where he served as a bomber pilot in the European theater. After the war he was assigned as a test pilot to work on the first jet aircraft. One of his doctors theorizes that prolonged exposure to pure oxygen may have caused the PF. Others believe that his woodworking hobby may be the culprit. For over 20 years he breathed fine sanding dust and the fumes from paints, lacquers, and stains, often without the benefit of a mask.
Bill's younger sister Pauline died of PF in July 1997 at the age of 77. Two of his younger brothers now have it. Clearly there is a family link, though many doctors are not yet willing to recognize that such a link may exist.
August 2000 - Bill took a friend to the airport. As they walked from the parking lot to the terminal with her suitcases, he suddenly was unable to breathe and he felt a tightness in his chest. After resting in the terminal, he drove home. Thinking that he was experiencing a problem with his heart, I immediately called his cardiologist who said to take him to the emergency room.
Thinking that the problem was a blockage of an artery or vein in the heart, the cardiologist ordered an angiogram. An angiogram is major surgery. It involves inserting a tube into an incision made in an artery in the groin. The tube is then fed up through the body to the heart as the process is filmed. After the procedure, the patient must lay flat without moving for 6 hours while the artery seals over (no stitches are used). The procedure is hard on the body and can possibly result in major bleeding. It is also very expensive. Our 6-hour hospital visit cost over $3,200.
Bill's angiogram showed not problem with his heart. The cardiologist sent him home with the recommendation that he see his family doctor. Bill had been telling the family doctor for years that he had a problem with his lungs, but the doctor dismissed his concerns. He would listen to Bill's lungs with a stethoscope and say that they sounded fine. When Bill mentioned the lung problem to his cardiologist, the cardiologist would say "Your heart is fine." No one was interested in pursuing a lung problem.
This time, Bill insisted on having a lung x-ray. When the results came back, the general practitioner was totally surprised to find that the lower half of Bill's lungs were black. He then recommended that we visit a pulmonologist and he sent the x-rays to one.
In a week or so we received a notice from the pulmonary clinic that the recommended doctor was not taking new patients and their first opening with another doctor would be in February 2001 - 5 months into the future. When I relayed the information to the general practitioner, he contacted another pulmonologist who was willing to see us in a couple of weeks.
We picked up the doctor's report and the x-rays to take to the new doctor. In looking at the radiologist's interpretation of the x-rays we learned that Bill probably had pulmonary fibrosis. We were not totally surprised by that since Bill's sister Pauline had died of pulmonary fibrosis 3 years earlier.
October 2000 - We visited Dr. O for the first time. We liked him immediately. He was an older man who seemed very thorough in his examination and in the questions that he asked. We spent 1 1/2 hours with him. He was not willing to immediately accept the diagnosis of pulmonary fibrosis without more information. He ordered a blood test, an echocardiogram, and a lung function test, all of which substantiated the fact that Bill did indeed have pulmonary fibrosis. Bill's resting blood oxygen level was 96, which is very good.
November 2000 - The recommended treatment for pulmonary fibrosis is Prednisone, a drug that has many side effects, including causing ulcers, bone loss, kidney problems, and cataracts. Prednisone is a cortisone-based anti-inflammatory. It is supposed to slow down the inflammation that causes the lung scarring associated with the disease. (For more information on pulmonary fibrosis, visit http://www.pulmonaryfibrosis.org/ipf.htm) Before Bill could begin taking Prednisone, he had to first be checked for the presence of the H. Pylori bacteria, which causes ulcers, and have a bone density scan.
Bill tested positive for H. Pylori. For two weeks he had to take two pills a day at precise times. He also had to restrict his diet during that time. He then had another blood test that showed that the treatment had been effective. For most of his adult life Bill had been plagued with what he called "sour stomach" or heart burn. He has not had it since completing the treatment.
The bone scan showed that Bill already had the start of osteoporosis in his lower spine. Therefore, Fosimax was added to his list of drugs as was Guaifenesin, a drug that adds moisture to the mucus in the lungs and helps control the dry, hacking couch that accompanies PF. Suddenly Bill had gone from taking one drug, to lower cholesterol, to taking a handful of them. Thankfully, we have an excellent prescription drug plan through Bill's former employer.
February 2001 - Bill's life as a drug-dependent individual begins. He also starts seeing his ophthalmologist every 4 months to monitor for cataracts.
February 2003 - Bill has been relatively stable in his illness for two years. Dr. O, the pulmonologist, is ready to retire. He transfers Bill to an internal medicine doctor, Dr. M. Dr. M is nice, but he is not versed in the care of someone with a lung disease. Basically, for nearly two years, he does little monitoring of Bill's progress other than to write occasional refills for medications.
March 2004 - Our son Bill (not a junior), who lives in Wisconsin, asked his father to come spend spring break with him (he teaches at a college) and help him build a buffet for their dining room. Because of his shortness of breath, Bill was a bit concerned about making the flight by himself and particularly about changing planes in Minneapolis. He would have to traverse from one end of the terminal to the other, a distance of nearly a half mile, which would need to be accomplished in about 40 minutes. However, he made the trip with no problems and had a great time getting to know our then one-year old grandson Liam. Bill and Liam, whose birthdays are 4 days apart, celebrated their birthdays together in a St. Patrick's birthday party, which is Bill's actual birthday.
Unfortunately, the cold and dampness of Wisconsin caused Bill to get sick, but a trip to the walk-in clinic for antibiotics was all that was needed.
August 14, 2004 - Bill tipped over the riding lawn mower this morning and tore the rotator cuff in his right shoulder. That evening as he was moving a sprinkler in the back yard he fell, hitting his head on the concrete patio. A trip to the emergency room the following day revealed two broken ribs. This slowed him down for the remainder of the summer.
Up until this time, Bill had been using the riding lawn mower in the back yard (we have 1/3 acre) and mowing the smaller front yard with the self-propelled lawn mower, giving himself some much needed exercise. After his fall, he doesn't mow again. Our son Jim takes over.
December 2004 - We decide to go to Wisconsin for a post-Thanksgiving, early Christmas visit. Bill made the trip well and he was able to go out Christmas tree shopping. When we went shopping for Liam's Christmas present, Bill tried out the scooter in the store for the first time. He found it easy to use and he had fun checking out the huge store.
The week after we came home Bill had a cataract removed from one eye. Prednisone causes cataracts, so this was not a surprise.
January 2005 - The cardiologist is concerned that the PF is progressing and Bill's shortness of breath is not being monitored as closely as it should be. He sends Bill to another pulmonologist, Dr. D.
March 2005 - We see Dr. D. for the first time. He is associated with the clinic that wasn't taking new patients back in October 2001. He is young and personable, but seems to know little about pulmonary fibrosis. He is certain that Bill's breathing problems are caused by a heart valve that is slowly closing and not by the PF.
April 2005 - Back to the cardiologist to find out if the heart valve is the cause of the shortness of breath. The cardiologist assures us that it is normal in older patients and is not the cause of Bill's labored breathing. This back-and-forth issue of heart valve or PF continues even today.
July 5, 2005 - Today I am taking our 11-year old granddaughter Caitlyn to Wisconsin to visit Bill, Tricia, Liam, and new baby Cole. I was concerned about leaving Bill home by himself for 5 days, but he found a solution without my need to voice my concerns. He suggested that he go to visit his brother Denny, who lives near Eugene, Oregon. Denny will be 93 the end of August. He is a widower, having lost his wife to cancer 4 years ago. He owns a 40-acre farm, part in filbert trees and part in rye grass. He still puts in a full day of work.
Bill asked our daughter Marci and our 7-year old granddaughter Camille (Caitlyn's sister) to accompany him. This is the perfect solution. Not only does Camille get to take a trip, but Marci can keep an eye on Bill, and they will all get to visit with Denny. Plus, they went over to the coast for two days as an added bonus. They came home the same day as Caitlyn and I.
July 29, 2005 - Bill got up early to meet a friend for morning coffee. As he left the house, he stopped to turn on the sprinkler at the spigot on the front of the house. Somehow he fell, landing on his back in a flower bed. He picked himself up and went on to coffee. By the time he came home, he was in pain.
July 31, 2005 - After two days of pain, Bill decided that we needed to go to the emergency room. He was diagnosed with two broken vertebrae in the lumbar (lower back) area. He was given pain medication and told to wait 10 days then call a spine clinic if he wasn't better. He is in great pain. Bill never takes medicine unless he has to, and he can't get enough of the pain medication.
August 15, 2005 - We are finally able to see an orthopedic doctor at the spine clinic. He orders a brace to lift and separate the vertebrae and take the pressure off the injured area. The brace fits from Bill's collar bone to his pelvis. There is an oval metal tube in the front and the back. The sides are made of rigid plastic. It is all held together with 4 Velcro fasteners. Bill even has to sleep in it.
The emergency room doctor said that Bill was a candidate for vertebroplasty, a procedure in which a cement or "super glue" is injected into the broken area to fuse it together. However, this option was not offered by the spine doctor. Apparently, if a person's body is capable of producing new bone, which Bill's was, then vertebroplasty shouldn't be done.
In retrospect, if I were doing it again, I would not have waited to make an appointment with the spine doctor. Instead, I would have called the day after the emergency room visit.
September 2005 - Bill is out of the brace and walking slowly with a cane. We see Dr. D., who is concerned with his appearance. Bill has lost over 40 pounds since February. The brace restricted his ability to breath deeply and the injury prevented him from getting even limited exercise. He has clearly gone down hill very rapidly. Again Dr. D. mentions the heart valve as the primary reason for Bill's shortness of breath. He recommends physical therapy to try to restore some muscle function. Bill's resting blood oxygen level is 94, which is extremely good. When it decreases to 88, he will be placed on oxygen.
I think that Bill has had a bit of depression since his fall. He is beginning to feel sorry for himself and to make excuses for why he can't do the simplest thing. He has worn nothing but sweats since the visit to the emergency room 6 weeks ago. Bill has never been good at helping inside the house, but at least he would put his dishes in the dishwasher and try to clean up a bit, but no more. Now, if I am home, he expects to be waited on hand and foot. He sits in his chair holding out his glass waiting for me to see his pathetic expression. The fact that I have to go to work occasionally forces him to do something for himself.
The day after the doctor's visit, when our pastor, who just returned from a 3-month sabbatical, called to ask about having lunch, Bill actually offered to pick him up! He put on clothes and drove for the first time in six weeks. This seemed to be the catalyst that he needed to again show some interest in life.
Bill has been back to church only once since his fall. For over a year he has been concerned about having a coughing spell during the service and having to leave. When he did have a spell, one of the church members, who is a chiropractor, often followed him out and I would find the two of them sitting in the hall discussing airplanes. Jim was a great encouragement to Bill and because he was with Bill I didn't feel the need to leave early.
Late September - A physical therapist referred by Dr. D. called and then came by. She said that Bill didn't need her; he needed lung therapy. In addition, because he is able to drive and not totally house-bound, Medicare will not pay for his treatments. So far, that is the only time we have seen or heard from a therapist.
October 5 - 8, 2005 - Bill's brother and wife from Dallas plan to meet us in Jackson Hole, Wyoming for a few days. They are at their son's in eastern Wyoming. Though I question the wisdom of the trip, Bill insists that he really wants to see his brother for what could be the last time.
The day before we are to leave, the sister-in-law Billye (do you see a family trend in names here?), called to say that it is supposed to snow and they are afraid to drive through the Rocky Mountains, so they canceled. They are going home to Dallas instead. Bill decides that we are going anyway. We are taking our 11-year old granddaughter, Caitlyn and we had promised to spend a night with my sister in southern Montana.
Bill did most of the driving and he did well. We borrowed a wheel chair from Caitlyn's other grandmother. Caitlyn and I walked and wandered in Yellowstone and Grand Teton National Parks while Bill rested in the car. In Jackson Hole we put Bill in the wheel chair and pushed him around town. Everywhere we went, the people were great. They helped us unload and reload the chair into the car. They offered help wherever we went.
The last evening Bill started feeling the effects of the altitude and had some difficulty sleeping. On the trip home Bill rested in the car while Caitlyn and I hiked in the rain at Craters of the Moon National Monument. In her science class, Caitlyn is studying the formation of the Earth, including earthquakes and volcanos, so this trip was a living science project for her.
Caitlyn was a trooper. She understands Grandpa's problems and she takes them in stride. When he has coughing seizures, she doesn't get upset, and she accepts his limitations. In Jackson Hole she had to take her turn in the wheel chair, doing spins in the parking lot. She thought the chair was cool.
October 23, 2005 - This brings us to today. Bill continues to lose weight, which along with loss of appetite, is a symptom of PF. Today he weighed 136 pounds, over 40 pounds less than he did in February. What the future holds, we don't know, but we thank God for each day that he gives us.
Our journey "officially" began in August 2000. Looking back, we can point to numerous instances that were related to the pulmonary fibrosis but were misdiagnosed or ignored by the medical community. One such instance occurred in March 2000 when Bill had what appeared to be a viral infection accompanied by chest pains and shortness of breath. The emergency room doctors diagnosed it as bacterial pneumonia. They could find no signs of pneumonia in his blood, but the cloudy lung x-ray led to the conclusion that he must have pneumonia. To their credit, he did improve after receiving intravenous antibiotics.
Doctors have been unwilling or unable to tell us what Bill's prognosis may be. All they can tell us is that he has outlived the expectations for someone with PF. Most people survive 3 to 5 years after diagnosis and they spend a portion of that time on oxygen. It is now 5 years since Bill's official diagnosis and he is still not on oxygen.
Bill is 90 years old, which in itself, doctors find remarkable. He is a highly decorated veteran of World War II where he served as a bomber pilot in the European theater. After the war he was assigned as a test pilot to work on the first jet aircraft. One of his doctors theorizes that prolonged exposure to pure oxygen may have caused the PF. Others believe that his woodworking hobby may be the culprit. For over 20 years he breathed fine sanding dust and the fumes from paints, lacquers, and stains, often without the benefit of a mask.
Bill's younger sister Pauline died of PF in July 1997 at the age of 77. Two of his younger brothers now have it. Clearly there is a family link, though many doctors are not yet willing to recognize that such a link may exist.
August 2000 - Bill took a friend to the airport. As they walked from the parking lot to the terminal with her suitcases, he suddenly was unable to breathe and he felt a tightness in his chest. After resting in the terminal, he drove home. Thinking that he was experiencing a problem with his heart, I immediately called his cardiologist who said to take him to the emergency room.
Thinking that the problem was a blockage of an artery or vein in the heart, the cardiologist ordered an angiogram. An angiogram is major surgery. It involves inserting a tube into an incision made in an artery in the groin. The tube is then fed up through the body to the heart as the process is filmed. After the procedure, the patient must lay flat without moving for 6 hours while the artery seals over (no stitches are used). The procedure is hard on the body and can possibly result in major bleeding. It is also very expensive. Our 6-hour hospital visit cost over $3,200.
Bill's angiogram showed not problem with his heart. The cardiologist sent him home with the recommendation that he see his family doctor. Bill had been telling the family doctor for years that he had a problem with his lungs, but the doctor dismissed his concerns. He would listen to Bill's lungs with a stethoscope and say that they sounded fine. When Bill mentioned the lung problem to his cardiologist, the cardiologist would say "Your heart is fine." No one was interested in pursuing a lung problem.
This time, Bill insisted on having a lung x-ray. When the results came back, the general practitioner was totally surprised to find that the lower half of Bill's lungs were black. He then recommended that we visit a pulmonologist and he sent the x-rays to one.
In a week or so we received a notice from the pulmonary clinic that the recommended doctor was not taking new patients and their first opening with another doctor would be in February 2001 - 5 months into the future. When I relayed the information to the general practitioner, he contacted another pulmonologist who was willing to see us in a couple of weeks.
We picked up the doctor's report and the x-rays to take to the new doctor. In looking at the radiologist's interpretation of the x-rays we learned that Bill probably had pulmonary fibrosis. We were not totally surprised by that since Bill's sister Pauline had died of pulmonary fibrosis 3 years earlier.
October 2000 - We visited Dr. O for the first time. We liked him immediately. He was an older man who seemed very thorough in his examination and in the questions that he asked. We spent 1 1/2 hours with him. He was not willing to immediately accept the diagnosis of pulmonary fibrosis without more information. He ordered a blood test, an echocardiogram, and a lung function test, all of which substantiated the fact that Bill did indeed have pulmonary fibrosis. Bill's resting blood oxygen level was 96, which is very good.
November 2000 - The recommended treatment for pulmonary fibrosis is Prednisone, a drug that has many side effects, including causing ulcers, bone loss, kidney problems, and cataracts. Prednisone is a cortisone-based anti-inflammatory. It is supposed to slow down the inflammation that causes the lung scarring associated with the disease. (For more information on pulmonary fibrosis, visit http://www.pulmonaryfibrosis.org/ipf.htm) Before Bill could begin taking Prednisone, he had to first be checked for the presence of the H. Pylori bacteria, which causes ulcers, and have a bone density scan.
Bill tested positive for H. Pylori. For two weeks he had to take two pills a day at precise times. He also had to restrict his diet during that time. He then had another blood test that showed that the treatment had been effective. For most of his adult life Bill had been plagued with what he called "sour stomach" or heart burn. He has not had it since completing the treatment.
The bone scan showed that Bill already had the start of osteoporosis in his lower spine. Therefore, Fosimax was added to his list of drugs as was Guaifenesin, a drug that adds moisture to the mucus in the lungs and helps control the dry, hacking couch that accompanies PF. Suddenly Bill had gone from taking one drug, to lower cholesterol, to taking a handful of them. Thankfully, we have an excellent prescription drug plan through Bill's former employer.
February 2001 - Bill's life as a drug-dependent individual begins. He also starts seeing his ophthalmologist every 4 months to monitor for cataracts.
February 2003 - Bill has been relatively stable in his illness for two years. Dr. O, the pulmonologist, is ready to retire. He transfers Bill to an internal medicine doctor, Dr. M. Dr. M is nice, but he is not versed in the care of someone with a lung disease. Basically, for nearly two years, he does little monitoring of Bill's progress other than to write occasional refills for medications.
March 2004 - Our son Bill (not a junior), who lives in Wisconsin, asked his father to come spend spring break with him (he teaches at a college) and help him build a buffet for their dining room. Because of his shortness of breath, Bill was a bit concerned about making the flight by himself and particularly about changing planes in Minneapolis. He would have to traverse from one end of the terminal to the other, a distance of nearly a half mile, which would need to be accomplished in about 40 minutes. However, he made the trip with no problems and had a great time getting to know our then one-year old grandson Liam. Bill and Liam, whose birthdays are 4 days apart, celebrated their birthdays together in a St. Patrick's birthday party, which is Bill's actual birthday.
Unfortunately, the cold and dampness of Wisconsin caused Bill to get sick, but a trip to the walk-in clinic for antibiotics was all that was needed.
August 14, 2004 - Bill tipped over the riding lawn mower this morning and tore the rotator cuff in his right shoulder. That evening as he was moving a sprinkler in the back yard he fell, hitting his head on the concrete patio. A trip to the emergency room the following day revealed two broken ribs. This slowed him down for the remainder of the summer.
Up until this time, Bill had been using the riding lawn mower in the back yard (we have 1/3 acre) and mowing the smaller front yard with the self-propelled lawn mower, giving himself some much needed exercise. After his fall, he doesn't mow again. Our son Jim takes over.
December 2004 - We decide to go to Wisconsin for a post-Thanksgiving, early Christmas visit. Bill made the trip well and he was able to go out Christmas tree shopping. When we went shopping for Liam's Christmas present, Bill tried out the scooter in the store for the first time. He found it easy to use and he had fun checking out the huge store.
The week after we came home Bill had a cataract removed from one eye. Prednisone causes cataracts, so this was not a surprise.
January 2005 - The cardiologist is concerned that the PF is progressing and Bill's shortness of breath is not being monitored as closely as it should be. He sends Bill to another pulmonologist, Dr. D.
March 2005 - We see Dr. D. for the first time. He is associated with the clinic that wasn't taking new patients back in October 2001. He is young and personable, but seems to know little about pulmonary fibrosis. He is certain that Bill's breathing problems are caused by a heart valve that is slowly closing and not by the PF.
April 2005 - Back to the cardiologist to find out if the heart valve is the cause of the shortness of breath. The cardiologist assures us that it is normal in older patients and is not the cause of Bill's labored breathing. This back-and-forth issue of heart valve or PF continues even today.
July 5, 2005 - Today I am taking our 11-year old granddaughter Caitlyn to Wisconsin to visit Bill, Tricia, Liam, and new baby Cole. I was concerned about leaving Bill home by himself for 5 days, but he found a solution without my need to voice my concerns. He suggested that he go to visit his brother Denny, who lives near Eugene, Oregon. Denny will be 93 the end of August. He is a widower, having lost his wife to cancer 4 years ago. He owns a 40-acre farm, part in filbert trees and part in rye grass. He still puts in a full day of work.
Bill asked our daughter Marci and our 7-year old granddaughter Camille (Caitlyn's sister) to accompany him. This is the perfect solution. Not only does Camille get to take a trip, but Marci can keep an eye on Bill, and they will all get to visit with Denny. Plus, they went over to the coast for two days as an added bonus. They came home the same day as Caitlyn and I.
July 29, 2005 - Bill got up early to meet a friend for morning coffee. As he left the house, he stopped to turn on the sprinkler at the spigot on the front of the house. Somehow he fell, landing on his back in a flower bed. He picked himself up and went on to coffee. By the time he came home, he was in pain.
July 31, 2005 - After two days of pain, Bill decided that we needed to go to the emergency room. He was diagnosed with two broken vertebrae in the lumbar (lower back) area. He was given pain medication and told to wait 10 days then call a spine clinic if he wasn't better. He is in great pain. Bill never takes medicine unless he has to, and he can't get enough of the pain medication.
August 15, 2005 - We are finally able to see an orthopedic doctor at the spine clinic. He orders a brace to lift and separate the vertebrae and take the pressure off the injured area. The brace fits from Bill's collar bone to his pelvis. There is an oval metal tube in the front and the back. The sides are made of rigid plastic. It is all held together with 4 Velcro fasteners. Bill even has to sleep in it.
The emergency room doctor said that Bill was a candidate for vertebroplasty, a procedure in which a cement or "super glue" is injected into the broken area to fuse it together. However, this option was not offered by the spine doctor. Apparently, if a person's body is capable of producing new bone, which Bill's was, then vertebroplasty shouldn't be done.
In retrospect, if I were doing it again, I would not have waited to make an appointment with the spine doctor. Instead, I would have called the day after the emergency room visit.
September 2005 - Bill is out of the brace and walking slowly with a cane. We see Dr. D., who is concerned with his appearance. Bill has lost over 40 pounds since February. The brace restricted his ability to breath deeply and the injury prevented him from getting even limited exercise. He has clearly gone down hill very rapidly. Again Dr. D. mentions the heart valve as the primary reason for Bill's shortness of breath. He recommends physical therapy to try to restore some muscle function. Bill's resting blood oxygen level is 94, which is extremely good. When it decreases to 88, he will be placed on oxygen.
I think that Bill has had a bit of depression since his fall. He is beginning to feel sorry for himself and to make excuses for why he can't do the simplest thing. He has worn nothing but sweats since the visit to the emergency room 6 weeks ago. Bill has never been good at helping inside the house, but at least he would put his dishes in the dishwasher and try to clean up a bit, but no more. Now, if I am home, he expects to be waited on hand and foot. He sits in his chair holding out his glass waiting for me to see his pathetic expression. The fact that I have to go to work occasionally forces him to do something for himself.
The day after the doctor's visit, when our pastor, who just returned from a 3-month sabbatical, called to ask about having lunch, Bill actually offered to pick him up! He put on clothes and drove for the first time in six weeks. This seemed to be the catalyst that he needed to again show some interest in life.
Bill has been back to church only once since his fall. For over a year he has been concerned about having a coughing spell during the service and having to leave. When he did have a spell, one of the church members, who is a chiropractor, often followed him out and I would find the two of them sitting in the hall discussing airplanes. Jim was a great encouragement to Bill and because he was with Bill I didn't feel the need to leave early.
Late September - A physical therapist referred by Dr. D. called and then came by. She said that Bill didn't need her; he needed lung therapy. In addition, because he is able to drive and not totally house-bound, Medicare will not pay for his treatments. So far, that is the only time we have seen or heard from a therapist.
October 5 - 8, 2005 - Bill's brother and wife from Dallas plan to meet us in Jackson Hole, Wyoming for a few days. They are at their son's in eastern Wyoming. Though I question the wisdom of the trip, Bill insists that he really wants to see his brother for what could be the last time.
The day before we are to leave, the sister-in-law Billye (do you see a family trend in names here?), called to say that it is supposed to snow and they are afraid to drive through the Rocky Mountains, so they canceled. They are going home to Dallas instead. Bill decides that we are going anyway. We are taking our 11-year old granddaughter, Caitlyn and we had promised to spend a night with my sister in southern Montana.
Bill did most of the driving and he did well. We borrowed a wheel chair from Caitlyn's other grandmother. Caitlyn and I walked and wandered in Yellowstone and Grand Teton National Parks while Bill rested in the car. In Jackson Hole we put Bill in the wheel chair and pushed him around town. Everywhere we went, the people were great. They helped us unload and reload the chair into the car. They offered help wherever we went.
The last evening Bill started feeling the effects of the altitude and had some difficulty sleeping. On the trip home Bill rested in the car while Caitlyn and I hiked in the rain at Craters of the Moon National Monument. In her science class, Caitlyn is studying the formation of the Earth, including earthquakes and volcanos, so this trip was a living science project for her.
Caitlyn was a trooper. She understands Grandpa's problems and she takes them in stride. When he has coughing seizures, she doesn't get upset, and she accepts his limitations. In Jackson Hole she had to take her turn in the wheel chair, doing spins in the parking lot. She thought the chair was cool.
October 23, 2005 - This brings us to today. Bill continues to lose weight, which along with loss of appetite, is a symptom of PF. Today he weighed 136 pounds, over 40 pounds less than he did in February. What the future holds, we don't know, but we thank God for each day that he gives us.
Labels: lung disease, pulmonary fibrosis
25 Comments:
At 1:56 PM, heather said…
I found your blog after searching for information on IPF. My father was just diagnosed with this on Friday. He is 68 years old and known of us know what the future holds. It's nice to see how well your husband did for so many years. Thanks for taking the time to share your story for those of us who are just beginning this journey.
At 5:10 PM, Unknown said…
my father is 72 & is in the end stages of this horrific disease, he was diagnosed when he was 65 & has rapidly deteriorated since Jan 2011, he is on oxynorm to help calm his breathing, on oxygen 24/7 & many other tablets along with now having a chest infection, we have been told he only has weeks left which is heartbreaking & the hospice are now getting more involved. I am not sure what happens at the end of all this, he is just skin & bone, cant move & even going to the bathroom takes his breath away, he cant shower as it takes too much out of him plus he feels the cold, his feet have swelled up & he has no appetite, everything that you have mentioned about your husband. what happens at the end, does the heart give in ? does he just stop breathing ? we dont know what to expect. His brother who is 65 has just been diagnosed just recently.
At 12:44 PM, Memory Makers Event Planning, LLC said…
Tara, I am so sorry to hear about your father. It appears that your family also carries the pulmonary fibrosis gene. In our case, God was so very good. My husband slipped away in his sleep. My guess is that his heart could no longer handle the lack of oxygen. The end is different for each person. Having hospice involved will make it easier for you. They have access to medications to keep your father comfortable and to reduce the pain that comes at the end. My prayers are with you.
At 2:58 AM, Jenni said…
Chiropractors have a term for misalignments: subluxations. A vertebral subluxation is a misalignment of the bones that protect the spinal cord. It's a leak in the roof. Or a kink in the wiring of your nervous system. The severity of the subluxation can vary, and there are a number of potential contributing factors that can be physical, emotional, mental, or chemical. The subluxation can be caused by any number of incidents, from birth trauma to an auto accident to simple repetition or over-use.
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At 3:12 AM, Unknown said…
Everyone lies to their doctor at some point. Though the reasons that patients lie are complicated, it is an inescapable fact that your doctor can only do his job if he has the right information. It can sometimes be difficult and embarrassing to tell the truth, but your doctor will be happy with your honesty, and will be better able to help you. http://www.md247.com
At 10:14 AM, Unknown said…
Thank you for this blog! My mother is 78 and has just been diagnosed. The doctor told us in October that she is in the end stages and has 6 months to a year. Her oxygen levels have dropped over the last few days and we bumped her up to 5 liters and the doctor increased her prednisone. Monday I think we will be visiting about hospice and what to expect down the road. Thanks for the information it does help.
Robin
At 7:48 PM, Unknown said…
Dad has of and his oxygen lvl is 88 after walking short distance to bathroom out of breath mom is scared he is scared and depressed . I am sad I think he might got a germ she had sinus infection and it might affect him different what do I do they are both stubborn
At 9:12 PM, Harsh Shah said…
Can you please tell me more what happned fo your loved one in this case, my father is Adv stage IPF amd We r going thru roller coaster of emotions.
At 11:46 PM, Unknown said…
My husband had a cough and I kept taking him to the doctor for months every couple weeks. Told bronchitis and treated then sent for xray feared pneumonia clear. Then doc says it's a mucus plus and does a bronchoscopy. No change dr found nothing and the biopsy was clear. Then he gets a cat scan and then we are told he has pulmonary fribrosis. My husband is estatic when he hears it's not cancer not abestosis. He only gears there's no cure for the bothers on cough. I google it while dr is talking.
It's not good. My husband had yes had hepatitis C which he is cured from through a trial he has cirrhosis from the former hepatitis C. I'm reading about treatments on math and the medication shouldn't be taken with liver disease. With all that said we've endured 7 years of illness first his then me with lung cancer. We both beat the odds and now this! He's 71 I'm 55
I just don't understand where or why this disease is
At 11:50 PM, Unknown said…
Sorry for the typos. Posted before I finished.
With cirrhosis he's definitely not a candidate for transplant because that's two major organs. What I don't know is how fast he will get sick. Oxygen is 98 drops to 92 when exercising. I just don't know what to do for him. How to help him how to keep him healthy.
At 10:36 AM, Unknown said…
Where are you located?
At 8:44 PM, Joan Davids said…
(MUST READ: HOW I GOT CURED FROM PULMONARY FIBROSIS)
I was diagnosed of Pulmonary fibrosis in March 2014, my doctor told me it has no permanent cure, i was given medication to ease the situation, this affected me so badly as i constantly go short of breath, this continued till a friend of mine Karen told me about Ejiro Herbal Clinic were she bought herbal medicine that totally cured her mother of pulmonary fibrosis, I contacted this herbal clinic via their email and purchased the pulmonary fibrosis herbal remedy, i received the herbal medicine within 7 days and when i started usage my lungs gradually got better until i even forgot i had pulmonary fibrosis, i went back to my family doctor to test for idiopathic pulmonary fibrosis my doctor confirmed my lungs tissue were 98% repaired. Contact this herbal clinic via their email ejiroherbalclinic@gmail.com
At 3:04 PM, dbp9000 said…
How very kind of you to share this experience with us. An IPF diagnosis is very scary, as you know.
I'm trying to find out if the progression of the disease is smooth (for want of a better word), or does it progress at whatever rate, then has episodes where it suddenly becomes worse. Any information from anyone would be helpful. I'll bookmark this page and check back periodically. Thanks so much!
At 5:35 AM, shane said…
I decided to share this to help someone out there who is still held with Pulmonary fibrosis.
My grandmother suffered from IPF for 4 years and we traveled round the world from one hospital to another pulmonologist and spent thousands of dollars and even got her condition worsen in this process of seeking a cure and the problem still persisted. she acted slow and week, struggling to take each breath and this was so scary. All thanks to Dr George tom who was able to use his medicine to cure her permanently. He is one of the Honest men out there. If you want to contact him on how to get his medicine called MALVA-H or for info about IPF check out his blog,https://curetoidiopathicpulmonaryfibrosis.blogspot.com or reach him directly on dr.georgetom@gmail.com , Thanks admin.
At 6:08 AM, Varsha said…
Hey,
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At 3:17 AM, TINA PHILIPA said…
I am very much happy to share to every viewers that is reading this,I want to inform the whole public of how I got help for my herpes, I wanted this since 6 months ago, I have also taken treatment from some doctor,few weeks back I came on the net to see if I will be able to get any information as to cure my herpes, on my search I saw various testimony of people who was helped by a great man called Dr Akhigbe and without any hesitation, I contacted him, I wrote to him and and he guided me, I asked him for solutions and he started the remedies for me and indeed 3 weeks after I started using the medicine, I was completely happy as it worked for me.I went to the hospital for check up and indeed I was declared negative from my disease, and I also waited again for two weeks and went back to another hospital for check up to be fully sure and to my great surprise I was still declared negative, and I decided to share this great opportunity to those people out there fighting this sickness, You can contact him now for your medicine to cure your diseases, contact his Email; drrealakhigbe@gmail.com or Whatsapp +2349010754824 website. hpps:drrealakhigbe.weebly.comDr Akhigbe also cure diseases like..
HIV, Herpes , Cancer, Chronic Disease, Asthma , Parkinson's disease, External infection, Als, progeria, common cold, multiple sclerosis disease, Nausea, Vomiting or Diarrhea, Heart Disease, meningitis, Esquizofrenia, Toxoplasmosis, Pulmonary Fibrosis,Diabetes, Kidney Disease, Lupus, Epilepsy, Stroke,Eczema, Erysipelas Eating Disorder, Back Pain. Osteoporosis etccontact him for your solution.
At 6:02 AM, Lisa Kenneth said…
I'm 59 years old and female. I was diagnosed a couple of years ago with COPD and I was beyond scared! My lung function test indicated 49% capacity. After having had flu a year ago, the shortness of breath, coughing and chest pains continued even after being treated with antibiotics. I've been smoking two packs a day for 36 years. Being born without a sternum caused my ribs to be curled in just one inch away from my spine, resulting to underdeveloped lungs. At age 34 I had surgery and it was fixed. Unfortunately my smoking just caused more damage to my already under developed lungs. The problem was having is that I enjoy smoking and don't want to give up! Have tried twice before and nearly went crazy and don't want to go through that again. I saw the fear in my husband and children's eyes when I told them about my condition then they start to find solution on their own to help my condition.I am an 59 now who was diagnose COPD emphysema which I know was from my years of smoking. I started smoking in school when smoking was socially acceptable. I remember when smoking was permitted in hospitals. It was not known then how dangerous cigarettes were for us, and it seemed everybody smoked but i was able to get rid of my COPD lung condition through the help of Dr Akhigbe total cure herbal medicine. my husband saw his testimony on the internet he used his powerful medicine to cured differents diseases. we contacted his email [drrealakhigbe@gmail.com} He has the right herbal formula to help you get rid and repair any lung conditions and others diseases, will cure you totally and permanently with his natural organic herbs,We received the medicine through courier delivery service. I wish anybody who starts smoking at a young age would realize what will eventually happen to their bodies if they continue that vile habit throughout their life.
Dr Akhighe also cured diseases like, HERPES, DIABETES, HIV/AIDS, COPD, CANCER,ASTHMA,STROKE,LUPUS,JOINT PAIN,CHRONIC DISEASES,PARKINSON DISEASES,TUBERCULOSIS,HIGH BLOOD PRESSURE,BREAST INFECTION,WOMEN SEXUAL PROBLEM, ERYSIPELAS,STAPHYLOCOCCUS,HERPATITIS A/B, QUICK EJACULATION,GONORRHEA,SYPHILIS,WAST/BACK PAIN,PELVIC INFLAMATORY, DICK ENLARGEMENT,HEART DISEASES,TERMINAL ILLNESS,SHIFT IN FUCUS,ATAXIA,COMMON COLD,CROHN'S DISEASES,ALCOHOL SPECTRUM DISORDER,GRAVES DISEASE,HEARING LOSS, INTERSTITIA CYSTITIS,LEUKEMIA,MULTIPLE SCLEROSIS,OBESITY,RABIS,SCOLIOSIS,INFLUENZA, POLIO,JACOB,ETC. If you are out there looking for your cure please contact dr Akhigbe by his email drrealakhigbe@gmail.com or contact his whatsapp number +2349010754824
God bless you Dr Akhigbe for your good hand work on my life
At 6:16 AM, Lisa Kenneth said…
I'm 59 years old and female. I was diagnosed a couple of years ago with COPD and I was beyond scared! My lung function test indicated 49% capacity. After having had flu a year ago, the shortness of breath, coughing and chest pains continued even after being treated with antibiotics. I've been smoking two packs a day for 36 years. Being born without a sternum caused my ribs to be curled in just one inch away from my spine, resulting to underdeveloped lungs. At age 34 I had surgery and it was fixed. Unfortunately my smoking just caused more damage to my already under developed lungs. The problem was having is that I enjoy smoking and don't want to give up! Have tried twice before and nearly went crazy and don't want to go through that again. I saw the fear in my husband and children's eyes when I told them about my condition then they start to find solution on their own to help my condition.I am an 59 now who was diagnose COPD emphysema which I know was from my years of smoking. I started smoking in school when smoking was socially acceptable. I remember when smoking was permitted in hospitals. It was not known then how dangerous cigarettes were for us, and it seemed everybody smoked but i was able to get rid of my COPD lung condition through the help of Dr Akhigbe total cure herbal medicine. my husband saw his testimony on the internet he used his powerful medicine to cured differents diseases. we contacted his email [drrealakhigbe@gmail.com} He has the right herbal formula to help you get rid and repair any lung conditions and others diseases, will cure you totally and permanently with his natural organic herbs,We received the medicine through courier delivery service. I wish anybody who starts smoking at a young age would realize what will eventually happen to their bodies if they continue that vile habit throughout their life.
Dr Akhighe also cured diseases like, HERPES, DIABETES, HIV/AIDS, COPD, CANCER,ASTHMA,STROKE,LUPUS,JOINT PAIN,CHRONIC DISEASES,PARKINSON DISEASES,TUBERCULOSIS,HIGH BLOOD PRESSURE,BREAST INFECTION,WOMEN SEXUAL PROBLEM, ERYSIPELAS,STAPHYLOCOCCUS,HERPATITIS A/B, QUICK EJACULATION,GONORRHEA,SYPHILIS,WAST/BACK PAIN,PELVIC INFLAMATORY, DICK ENLARGEMENT,HEART DISEASES,TERMINAL ILLNESS,SHIFT IN FUCUS,ATAXIA,COMMON COLD,CROHN'S DISEASES,ALCOHOL SPECTRUM DISORDER,GRAVES DISEASE,HEARING LOSS, INTERSTITIA CYSTITIS,LEUKEMIA,MULTIPLE SCLEROSIS,OBESITY,RABIS,SCOLIOSIS,INFLUENZA, POLIO,JACOB,ETC. If you are out there looking for your cure please contact dr Akhigbe by his email drrealakhigbe@gmail.com or contact his whatsapp number +2349010754824
God bless you Dr Akhigbe for your good hand work on my life
At 8:39 PM, Richard William said…
This comment has been removed by the author.
At 11:53 PM, Sushanth said…
Hey,
I noticed your Article. I just loved it.
Dr. Ankireddy’s clinic treats Chronic, deep-seated health problems from cold to cancer, an autoimmune disorder with his own approach. Here we provide the homeopathy doctor in hyderabad that works with your body to restore overall balance – relieving symptoms and promoting long-term good health.
Cheers,
Sushanth
At 7:17 PM, Richmond Kelly said…
My dad was diagnosed with Alzheimer's diseases this neuron disease started 25 years before being revealed it was triggered the moment we started eating sugars including any and almost all carbs that break down to glycerol, and he was placed on the best medical treatment approved by the United States, (FDA) he has been taking Cholinesterase, Meantime to treat his memory loss, confusion and the problems with his thinking and reasoning. Just to help slow the progression and manage the symptoms, as no cure exists I read through with interest. I once believed Alzheimer disease has no cure. Well it is true with English medicine, but not with herbal medicine. My Dad's experience opened my eyes to the reality of a cure through herbs. My Father was a vibrant man before his encounter with Alzheimer. He was a scientist, hence his mental capability was never in doubt. In 2013, he was diagnosed with Alzheimer. The symptoms manifested through repeating conversation and gradually forgetting things. It became progressive from finding the right words during conversation, to significant confusion and forgetting details about himself. It was not a good experience, seeing your father whose brilliance had no match, totally became a shadow of himself. His doctors said the disease has no cure, just medications for treatment which had a lot of side effects were administered to him. Early 2016, while on the internet, I bumped into a story of Alzheimer, and I read about a cure through herbs with interest. I researched more to be sure it was not a hoax. In my quest, Doctor James herbal mix medicine was mentioned in the testimony. I contacted the Great Healer on his email that was provided (GREATCUREMAN'@MAIL.COM) and I got his herbal mix medicine for my father. He told me that his herbal mix medicine will help my Dad to reduce the abnormal protein fold inside his neurons, and regulate the nutrients and molecules in his body system, and as well stop the progressive disorder that build up in damaging his brain cells, and help his weak cells that causes brain shrinking to function well, it's a good herbal drinks for cell repairing. This doctor James is a super great man and his herbal mix medicine is wonderful and works effectively as he said, with no side effects. It's been 4 years and my Dad is perfectly okay and back to his laboratory work even at old age. For your loved ones with Alzheimer or Dementia, take them off English medicine and use Dr. James herbal mix medicine for treatment. If you are suffering from Dementia, Alzheimer's disease or facing different kinds of health challenges do not hestitate to contact the great healer on his Email at.(GREATCUREMAN@GMAIL.COM]. and get your permanent cure. He's a good man, and he will help you.
At 2:55 PM, Brad Crawford said…
After years of working in construction and smoking cigarettes,I was diagnosed with COPD and pulmonary fibrosis. As my illness progressed, I found myself relying on supplemental oxygen around the clock. Even getting out of bed became a challenge.My doctors and specialists recommended a lung transplant, but after researching the pros and cons of such a drastic procedure, I decided to try something less invasive. I contacted multivitamin herbal cure cape town for organic natural treatment you can search for them on google. Following the COPD and pulmonary fibrosis herbal treatment procedure , my lung function has improved dramatically after my first four weeks of the herbal formula .My quality of life has gotten a lot better. I was amazed that I could breathe without any dead air. I no longer need oxygen and look forward to continued improvement because a specialist told me already I have a chance of getting rid of my condition totally due to the herbal treatment effectiveness . If you or someone you love has COPD, pulmonary fibrosis or another chronic lung disease, and would like to see improvements like mine they even guarantee me totally cure once the treatment is done , their website multivitamincare org they will put you through on the herbal process .
At 9:06 AM, Florence said…
I started on COPD Herbal treatment from Ultimate Health Home, the treatment worked incredibly for my lungs condition. I used the herbal treatment for almost 4 months, it reversed my COPD. My severe shortness of breath, dry cough, chest tightness gradually disappeared. Reach Ultimate Health Home via their email at ultimatehealthhome@gmail.com . I can breath much better and It feels comfortable!
At 8:38 AM, Victoria said…
My father was diagnosed with Parkinson's disease at 57.his symptoms were shuffling of feet,slurred speech, low volume speech, degradation of hand writing, horrible driving skills, right arm held at 45 degree angle, things were tough for me, but now he finally free from the disease with the help of total cure from ULTIMATE LIFE CLINIC, he now walks properly and all symptoms has reversed, he had trouble with balance especially at night, getting into the shower and exiting it is difficult,getting into bed is also another thing he finds impossible.we had to find a better solution for his condition which has really helped him a lot,the biggest helped we had was ultimate life clinic they walked us through the proper steps,i recommended this www.ultimatelifeclinic.com to anyone who needs there help.
At 3:28 AM, Ken Thomas said…
I was diagnosed in 2013 with pulmonary fibrosis and in early 2014 was told it was idiopathic pulmonary fibrosis (IPF). Next thing I found was I would need to carry around oxygen wherever I went and use it at home and while I slept. I was given a couple of years. In 2018 I was told by a holistic nurse practitioner to try multivitamin herbal treatment because my condition was getting worse. I used the herbal formula in March 2018. My lifestyle has changed since all this began. I consume no alcohol, walk more than I used to and without oxygen, and am able to control my weight much better than before.All of this has changed. I exercise and walk daily, play catch and dance with my grandchildren, I use the organic remedy for over 4 month without any further usage or side effects . I can only speak for myself, but I highly recommend www multivitamincare. org treatment for those who know the feeling of gasping for air as I did.
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