PENNY:
November 2005, I had what I thought was a really bad cold/bronchitis. I had broken my ankle in
October (on the golf course to say the least) and was in a cast/crutches; the holidays were upon us
and I had just changed jobs at the bank where I work and did not have time to worry with what I thought was
a bad cold. Lingering coughs had been the norm for me all my life so I didn't worry too much about it.
To be honest, I just didn't have time or was able to break lose to go to the doctor.
By February 2006, I was really tired and could not shake this awful cough. I finally went to the doctor who
wrote me the normal prescriptions along with an antibiotic and steroids. Still no
improvement.
March 2006, I got this rash (circles for the most part) that came up just randomly all over my body. The
doctor said he didn't really know what it was but wrote me a prescription for a strong anti-fungal
steroid cream. Took months to get it cleared up. NOTE: I learned from the conference that this was a histo
break-out.
April 2006, I went back to the doctor this time with the cough, extreme fatigue, fevers, chills, terrible pain in
my sides, back, chest, headaches, etc. Just achy all over. He did chest x-rays and a bunch of
blood work. He wrote stronger prescriptions and more steroids and referred me to a rheumatologist since
Lupus runs in my family and my sed rate came back extremely high.
May 2006, the Rheumatologist chalked it up to Fibromyalgia or Chronic Fatigue and said that I was
probably a little depressed. She wrote prescriptions for anti-inflam and said that really there was nothing
else she could do for either of the syndromes and to see my primary for the depression.
Late June/early July, I was terribly sick. I was in so much pain that I could not function. My primary doctor
then sent me to our local pulmonary group. The doctor said that I had Chronic Bronchitis and COPD from
the years of smoking. Put me on two inhalers, steroids and another round of different antibiotics.
August, I had reached the end of my rope. I literally felt as though I was suffocating to death and that
something terribly was wrong with me. I had gotten to the point that I could not function at work and at
home. The pain was so severe in my uppper extremities that it was unbearable. I had started having these
cramps/spasms that were so painful that I would scream out in pain. I had to have help bathing, dressing,
etc. I was a hazard to be on the road driving because of the spasms. Finally during August, my husband
insisted on taking me to the ER. I was put in the hospital for 5 days with pneumonia. An Infectious Disease
doctor was called in, the Rheumatologist and Pulmonary doctors as well. Nobody could figure out anything
other than the pneumonia in my right lung. IV antibiotics and sent home.
Two weeks later in August, I had become so weak that I could not even lift my legs or feet to walk. I was
rushed back to the ER and put in the hospital again - pneumonia. I had lost all color in my skin and my
fevers were constant running about 101 to 104. My breathing was so shallow and struggled that my blood
pressure had dropped to 90/24. At this point and according to the doctors, my right lung had shut down
and I was put on two of the strongest IV antibiotics available. Breathing treatments every 4 hours and blood
work every 4 hours as well as oxygen. The Pulmonary doctors did a bronchoscope with a pediatric scope
and just said that my airways were constricted and wanted wanted to put the stents in my airways and at
the last minute decided not to for some reason . . . I would like to believe that God intervened because the
doctor at Emory Hospital said that would have been the worst thing they could have done for me. The local
doctors after an 8 day hospital stay referred me to Dr. Rabih Bechara at Emory Hospital in Atlanta. He is
the Chief Critical Care Pulmonary Director at the Medical School and Hospital. He immediately went to work.
The FM was my diagnosis.
September 2006, he found that I had so much fluid/pneum in my right lung that it had escaped to outside
the lung and was constricting the muscle flap which is right over the lung and helps protect it. He drew as
much of the fluid off as he could. He said that due to the severity of the pneum. I would keep what is
referred to post-obstructive pneumonia in the bottom lobe that had shut down. After yet another CT scan
(4th on at this point), he said that the fibrosis about overtook the scan. It has already latched onto the
bottom 1/3 of my lung and has shut it down and is all in my airways and broch tubes (branches). I had my
first dilation/balloon. Using a pediatric scope he was able to get me to a 12 mm. Two weeks later, dilation to
a 15 mm. Another three weeks later, I had a rigid bronchoscope as well as a non-traditional chemo
treatment that a doctor at Harvard had told my doctor about. Stood a 50/50 chance of slowing the
progression down and he dilated me to a 16 mm. He said this is about the norm. At this point, they were
thinking silicone stents. He said that the stents would just be a temporary solution and would only
help for a short time. I learned at the FM spreads faster when it is in the airways according to Dr. Loyd and
my doctor in Atlanta. I was instructed to check in with him in 6 months.
March 2007 after many of the symptoms returning, I visited my doctor again. Another CT Scan and bronch.
My FM is spreading faster than they had hoped. I had another bronchoscope and more biopsies done. My
airways are back down to a 12 and I have so much inflammation that the FM is feeding on it and spreading.
I stay swollen in my upper extremities including my neck and face. Dr. Bechara doesn't think the
imflammation is related to the FM but everything I read and research tells me differently. He said that they
do not know where the swelling and inflammation is coming from. Now, they are saying that stents are
completely out of the question. I have to go back the first of May for another scope to check its progression
and more biopsies. My doctor as well as the Chief Thoracic Surgeon feels that in my case that having my
airways reconstructed may be the only option I have for life quality.
After attending the FM Conference in Nashville. I was not surprised by a lot of what I learned. I grew up in
East Tennessee and moved to Georgia in 1987. I am 42 years old.
May 2007 - another visit. Another bronch; no CT Scan this time. No change. Check back in again in 3
months. (August)
November 2005, I had what I thought was a really bad cold/bronchitis. I had broken my ankle in
October (on the golf course to say the least) and was in a cast/crutches; the holidays were upon us
and I had just changed jobs at the bank where I work and did not have time to worry with what I thought was
a bad cold. Lingering coughs had been the norm for me all my life so I didn't worry too much about it.
To be honest, I just didn't have time or was able to break lose to go to the doctor.
By February 2006, I was really tired and could not shake this awful cough. I finally went to the doctor who
wrote me the normal prescriptions along with an antibiotic and steroids. Still no
improvement.
March 2006, I got this rash (circles for the most part) that came up just randomly all over my body. The
doctor said he didn't really know what it was but wrote me a prescription for a strong anti-fungal
steroid cream. Took months to get it cleared up. NOTE: I learned from the conference that this was a histo
break-out.
April 2006, I went back to the doctor this time with the cough, extreme fatigue, fevers, chills, terrible pain in
my sides, back, chest, headaches, etc. Just achy all over. He did chest x-rays and a bunch of
blood work. He wrote stronger prescriptions and more steroids and referred me to a rheumatologist since
Lupus runs in my family and my sed rate came back extremely high.
May 2006, the Rheumatologist chalked it up to Fibromyalgia or Chronic Fatigue and said that I was
probably a little depressed. She wrote prescriptions for anti-inflam and said that really there was nothing
else she could do for either of the syndromes and to see my primary for the depression.
Late June/early July, I was terribly sick. I was in so much pain that I could not function. My primary doctor
then sent me to our local pulmonary group. The doctor said that I had Chronic Bronchitis and COPD from
the years of smoking. Put me on two inhalers, steroids and another round of different antibiotics.
August, I had reached the end of my rope. I literally felt as though I was suffocating to death and that
something terribly was wrong with me. I had gotten to the point that I could not function at work and at
home. The pain was so severe in my uppper extremities that it was unbearable. I had started having these
cramps/spasms that were so painful that I would scream out in pain. I had to have help bathing, dressing,
etc. I was a hazard to be on the road driving because of the spasms. Finally during August, my husband
insisted on taking me to the ER. I was put in the hospital for 5 days with pneumonia. An Infectious Disease
doctor was called in, the Rheumatologist and Pulmonary doctors as well. Nobody could figure out anything
other than the pneumonia in my right lung. IV antibiotics and sent home.
Two weeks later in August, I had become so weak that I could not even lift my legs or feet to walk. I was
rushed back to the ER and put in the hospital again - pneumonia. I had lost all color in my skin and my
fevers were constant running about 101 to 104. My breathing was so shallow and struggled that my blood
pressure had dropped to 90/24. At this point and according to the doctors, my right lung had shut down
and I was put on two of the strongest IV antibiotics available. Breathing treatments every 4 hours and blood
work every 4 hours as well as oxygen. The Pulmonary doctors did a bronchoscope with a pediatric scope
and just said that my airways were constricted and wanted wanted to put the stents in my airways and at
the last minute decided not to for some reason . . . I would like to believe that God intervened because the
doctor at Emory Hospital said that would have been the worst thing they could have done for me. The local
doctors after an 8 day hospital stay referred me to Dr. Rabih Bechara at Emory Hospital in Atlanta. He is
the Chief Critical Care Pulmonary Director at the Medical School and Hospital. He immediately went to work.
The FM was my diagnosis.
September 2006, he found that I had so much fluid/pneum in my right lung that it had escaped to outside
the lung and was constricting the muscle flap which is right over the lung and helps protect it. He drew as
much of the fluid off as he could. He said that due to the severity of the pneum. I would keep what is
referred to post-obstructive pneumonia in the bottom lobe that had shut down. After yet another CT scan
(4th on at this point), he said that the fibrosis about overtook the scan. It has already latched onto the
bottom 1/3 of my lung and has shut it down and is all in my airways and broch tubes (branches). I had my
first dilation/balloon. Using a pediatric scope he was able to get me to a 12 mm. Two weeks later, dilation to
a 15 mm. Another three weeks later, I had a rigid bronchoscope as well as a non-traditional chemo
treatment that a doctor at Harvard had told my doctor about. Stood a 50/50 chance of slowing the
progression down and he dilated me to a 16 mm. He said this is about the norm. At this point, they were
thinking silicone stents. He said that the stents would just be a temporary solution and would only
help for a short time. I learned at the FM spreads faster when it is in the airways according to Dr. Loyd and
my doctor in Atlanta. I was instructed to check in with him in 6 months.
March 2007 after many of the symptoms returning, I visited my doctor again. Another CT Scan and bronch.
My FM is spreading faster than they had hoped. I had another bronchoscope and more biopsies done. My
airways are back down to a 12 and I have so much inflammation that the FM is feeding on it and spreading.
I stay swollen in my upper extremities including my neck and face. Dr. Bechara doesn't think the
imflammation is related to the FM but everything I read and research tells me differently. He said that they
do not know where the swelling and inflammation is coming from. Now, they are saying that stents are
completely out of the question. I have to go back the first of May for another scope to check its progression
and more biopsies. My doctor as well as the Chief Thoracic Surgeon feels that in my case that having my
airways reconstructed may be the only option I have for life quality.
After attending the FM Conference in Nashville. I was not surprised by a lot of what I learned. I grew up in
East Tennessee and moved to Georgia in 1987. I am 42 years old.
May 2007 - another visit. Another bronch; no CT Scan this time. No change. Check back in again in 3
months. (August)
