At first I thought I had cut my mouth so I was looking in the mirror at the inside of my mouth but did not see anything
bleeding. I started vomiting up more blood and it looked like alot of blood to me. Next thing I knew I was waking up
on the floor in the bathroom, I guess I passed out for some reason. I left the bathroom and went to the back room
where another employee was and I had to sit down cause I was very lightheaded. She told me I looked very pale
and made me put a cold washcloth on my forehead. After sitting there for a few minutes I started to feel better so I
told her I was going to the hospital, she was trying to make me call an ambulance but I didn’t want to. The Hospital is
only a mile up the road and there was no traffic as it was late at night. So I drove to the hospital and went to the
emergency room. They got me into one of the rooms quickly, after asking about my insurance and billing info. Then
they shoved a tube up through my nose and down into my stomach to start pumping the blood out. It hurt so bad
when they put the tube in, like a lot of pressure on my sinuses and like it was going to pop my eyes out. I had the
tube up my nose for two days, and it hurt just as bad coming out. Then I had a endoscopy to see what was causing
the bleeding, and they found a couple ulcers. During the procedure I was wide awake but they sprayed something in
my mouth to numb it and injected through an IV some medication so that after the procedure I wouldn’t remember it
at all. The Doctor said that one of the ulcers was the biggest one he’s seen since the 80’s. He cauterized them
closed while he was in there and put me on nexium. A month later he went back in (another endoscopy) to see if
they were healing and to our surprise they were totally closed up and healing fine.
After I was released from the hospital I went to see my primary care physician to have a full physical and he
ordered blood tests, a stress test for my heart (as I told him I was having chest pains) and a chest X-ray. I did my
stress test at the Orlando Heart Center. They injected me with some radioactive dye and made me run on a
treadmill then took pictures of my heart. The results were that my heart was fine. They had no idea why I would be
having chest pains. About a week later I was called by my Doctors office to tell me to go and have a CT scan as my
X-ray came back abnormal. I asked what was abnormal about it and she told me there was a spot. About a week
after that I was told to go to the hospital and have a PET scan done as my CT scan also came back abnormal. I was
given no more information and was told that after my new scan results came back I would meet with my doctor to go
over the results.
After another week wait, I was called by the Doctor’s office and told to come in to see him. I was told that there was
a spot in my lung on the X-ray and the CT and PET scans showed a mass in my lung and chest and that my blood
test results showed a high white blood cell count which meant my body was trying to fight off something. He told my
that I had cancer and needed to go to see a cardiothoracic surgeon to see about getting a biopsy and about
treatment options.
I wound up moving from Orlando down to Deerfield Beach. I went to see a cardiothoracic surgeon in Fort
Lauderdale. He told me that he looked at my scans and I definitely had cancer and I would most likely need to have
my left lung removed. He said that I would first need a biopsy done. I had a needle biopsy done. It’s where they put
a large hollow needle in through my back to the mass to get a sample of its core. I was awake with no anesthetic
and they had to reposition the needle many times and slide me through a CT scan machine to make sure it is going
to the right place. The results were inconclusive. So a week later I had another needle biopsy, I was in so much pain
during and the next day after each procedure. The results of this one showed necrotic tissue. I was also sent to a
infectious disease Doctor who took as many blood samples as he could to check for everything possible. They all
came back negative. I had a pulmonary function test done to see if I could live on one lung and the results were yes
I could. I was then sent to a pulmonary Doctor and he was sure it was cancer also. My Doctors all had a meeting
with other doctors to review all my test results and discuss a plan of action. They decided by majority to just have
me wait another six months and have another scan to see if it spread since they had no clue what it was. My
cardiothoracic surgeon did not agree with that and strongly advised me to get a second opinion with a doctor at
Cleveland Clinic in Weston, Florida.
So I went to Cleveland Clinic to see the Cardiothoracic surgeon there. After reviewing everything he decided I
needed another needle biopsy, only this time I was given pain medication, the site was numbed good and I was
given the medication so I wouldn’t remember the procedure as I would be awake through the whole thing again. It
took over two weeks to get the results from this one as the samples were sent to Cleveland, Ohio, and they showed
that it was fibrotic tissue. Even these results weren’t conclusive as they said they didn’t have enough of a sample to
rule out cancer. They needed a larger sample.
They performed a thorocoscopy of my left lung but had to abort it. The plan was to make a few incisions and put a
scope with a camera in my side, deflate my lung and go in and get some good chunks for biopsy. That’s not what
happened as the doctor couldn’t deflate my lung, there were to many adhesions. (threads of tissue holding my
lungs to the side) he cut a bunch out but gave up because he didn’t want to take the chance of cutting into my lung.
So he passed me off to another cardiothoracic surgeon who was supposed to be the expert lung doctor. Six days
later the expert lung Doctor performed a thorocotomy on my right side instead of the left. They put the tube down
my throat and hooked me up to the breathing machine so that I would only be breathing through my left lung during
surgery as my right lung would be deflated during the procedure. Once my right lung was deflated my oxygen levels
in my blood dropped fast. Which meant my left lung wasn’t working. So the doctor had them reinflate my right lung
till my oxygen levels went back up then he would deflate it again to get a sample for biopsy. I was in surgery for
about four hours while the Doctor continued to do this. When I woke up I was in the intensive care unit in a lot of
pain and it was very hard to breath. I was in the hospital for about three days to recover. I had to have chest tubes
in to keep my lung inflated after both surgeries. Before I left I had seen the respiratory therapist and she had me
walk the hallway to check my oxygen levels and by the readings in the sensor on my finger she said I needed to be
on oxygen. She put me on oxygen and walked me down the hallway again and said I was fine with it. The physicians
assistant told her I didn’t need the oxygen and that he was discharging me. She insisted I did need it but he still said
no. So I was discharged.
Two days later I had to go to the emergency room because I was coughing so bad and couldn’t breath. The doctors
were worried that I had a pulmonary embolism and gave me two shots in my stomach to break it up. I was also put
on antibiotics for pneumonia. They also did a lung scan, X-ray and two CT scans. I was there for a day then went
home.
Two weeks later I was called into my Doctor’s office and he told me that I had Fibrosing Mediastinitis, not cancer as
they thought and that I would still have to have my lung cut out. He said he would not do it as it’s a hard procedure
to do with the FM present. Also the survival rate was very low. He told me I needed to go to either Barnes hospital,
St Louis; Mayo clinic, Rochester ,Minn.; or Cleveland clinic, Cleveland, Ohio for immediate treatment. I also told him
that it was harder for me to breath now since the surgery and that I get completely out of breath just walking up
stairs or taking a shower, even just doing little things, also I had developed a lump in my abdomen that really hurt,
His response was that it had to be done.
I went to see my pulmonary doctor and he read the recent reports of the biopsy’s and agreed with the other Doctor
that I needed to go to get treatment immediately. He told me the average life span for someone with Fibrosing
Mediastinitis is six years after diagnosis. He told me to go to Cleveland Clinic; Cleveland, Ohio.
I drove up to Cleveland, Ohio and was there for about two and a half months living in a hotel, and my doctor at
Cleveland Clinic treated me for asthma, gave me yet another CT scan, put me on prednisone for two months, gave
me asthma medications and told me there was nothing he or anyone can do for my fibrosing Mediastinitis, and that
it would get worse as time went on. I’ve never been diagnosed with asthma before in my life. He also told me that the
lump in my abdomen was a hernia from coughing. I drove back home still with no answers.
Once home I went to see my primary care Doctor and he was able to read all the reports look me over and ask me
all my symptoms. I told him about my troubles breathing and he ordered some more tests. A nurse came to my
house and monitored my oxygen level at rest, while walking, and left the machine that would record my levels while I
slept. The results of this test didn’t come out to good so my Doctor ordered me on oxygen at all times. It helps so
much. I still get out of breath from doing things but get it back quickly.
After all that I went through I was able to go to the Fibrosing Mediastinitis Conference and I learned a lot more than
I did from any of my previous Doctors and I now Know what Doctors to go to for this.
That’s pretty much it for my story, for now.
bleeding. I started vomiting up more blood and it looked like alot of blood to me. Next thing I knew I was waking up
on the floor in the bathroom, I guess I passed out for some reason. I left the bathroom and went to the back room
where another employee was and I had to sit down cause I was very lightheaded. She told me I looked very pale
and made me put a cold washcloth on my forehead. After sitting there for a few minutes I started to feel better so I
told her I was going to the hospital, she was trying to make me call an ambulance but I didn’t want to. The Hospital is
only a mile up the road and there was no traffic as it was late at night. So I drove to the hospital and went to the
emergency room. They got me into one of the rooms quickly, after asking about my insurance and billing info. Then
they shoved a tube up through my nose and down into my stomach to start pumping the blood out. It hurt so bad
when they put the tube in, like a lot of pressure on my sinuses and like it was going to pop my eyes out. I had the
tube up my nose for two days, and it hurt just as bad coming out. Then I had a endoscopy to see what was causing
the bleeding, and they found a couple ulcers. During the procedure I was wide awake but they sprayed something in
my mouth to numb it and injected through an IV some medication so that after the procedure I wouldn’t remember it
at all. The Doctor said that one of the ulcers was the biggest one he’s seen since the 80’s. He cauterized them
closed while he was in there and put me on nexium. A month later he went back in (another endoscopy) to see if
they were healing and to our surprise they were totally closed up and healing fine.
After I was released from the hospital I went to see my primary care physician to have a full physical and he
ordered blood tests, a stress test for my heart (as I told him I was having chest pains) and a chest X-ray. I did my
stress test at the Orlando Heart Center. They injected me with some radioactive dye and made me run on a
treadmill then took pictures of my heart. The results were that my heart was fine. They had no idea why I would be
having chest pains. About a week later I was called by my Doctors office to tell me to go and have a CT scan as my
X-ray came back abnormal. I asked what was abnormal about it and she told me there was a spot. About a week
after that I was told to go to the hospital and have a PET scan done as my CT scan also came back abnormal. I was
given no more information and was told that after my new scan results came back I would meet with my doctor to go
over the results.
After another week wait, I was called by the Doctor’s office and told to come in to see him. I was told that there was
a spot in my lung on the X-ray and the CT and PET scans showed a mass in my lung and chest and that my blood
test results showed a high white blood cell count which meant my body was trying to fight off something. He told my
that I had cancer and needed to go to see a cardiothoracic surgeon to see about getting a biopsy and about
treatment options.
I wound up moving from Orlando down to Deerfield Beach. I went to see a cardiothoracic surgeon in Fort
Lauderdale. He told me that he looked at my scans and I definitely had cancer and I would most likely need to have
my left lung removed. He said that I would first need a biopsy done. I had a needle biopsy done. It’s where they put
a large hollow needle in through my back to the mass to get a sample of its core. I was awake with no anesthetic
and they had to reposition the needle many times and slide me through a CT scan machine to make sure it is going
to the right place. The results were inconclusive. So a week later I had another needle biopsy, I was in so much pain
during and the next day after each procedure. The results of this one showed necrotic tissue. I was also sent to a
infectious disease Doctor who took as many blood samples as he could to check for everything possible. They all
came back negative. I had a pulmonary function test done to see if I could live on one lung and the results were yes
I could. I was then sent to a pulmonary Doctor and he was sure it was cancer also. My Doctors all had a meeting
with other doctors to review all my test results and discuss a plan of action. They decided by majority to just have
me wait another six months and have another scan to see if it spread since they had no clue what it was. My
cardiothoracic surgeon did not agree with that and strongly advised me to get a second opinion with a doctor at
Cleveland Clinic in Weston, Florida.
So I went to Cleveland Clinic to see the Cardiothoracic surgeon there. After reviewing everything he decided I
needed another needle biopsy, only this time I was given pain medication, the site was numbed good and I was
given the medication so I wouldn’t remember the procedure as I would be awake through the whole thing again. It
took over two weeks to get the results from this one as the samples were sent to Cleveland, Ohio, and they showed
that it was fibrotic tissue. Even these results weren’t conclusive as they said they didn’t have enough of a sample to
rule out cancer. They needed a larger sample.
They performed a thorocoscopy of my left lung but had to abort it. The plan was to make a few incisions and put a
scope with a camera in my side, deflate my lung and go in and get some good chunks for biopsy. That’s not what
happened as the doctor couldn’t deflate my lung, there were to many adhesions. (threads of tissue holding my
lungs to the side) he cut a bunch out but gave up because he didn’t want to take the chance of cutting into my lung.
So he passed me off to another cardiothoracic surgeon who was supposed to be the expert lung doctor. Six days
later the expert lung Doctor performed a thorocotomy on my right side instead of the left. They put the tube down
my throat and hooked me up to the breathing machine so that I would only be breathing through my left lung during
surgery as my right lung would be deflated during the procedure. Once my right lung was deflated my oxygen levels
in my blood dropped fast. Which meant my left lung wasn’t working. So the doctor had them reinflate my right lung
till my oxygen levels went back up then he would deflate it again to get a sample for biopsy. I was in surgery for
about four hours while the Doctor continued to do this. When I woke up I was in the intensive care unit in a lot of
pain and it was very hard to breath. I was in the hospital for about three days to recover. I had to have chest tubes
in to keep my lung inflated after both surgeries. Before I left I had seen the respiratory therapist and she had me
walk the hallway to check my oxygen levels and by the readings in the sensor on my finger she said I needed to be
on oxygen. She put me on oxygen and walked me down the hallway again and said I was fine with it. The physicians
assistant told her I didn’t need the oxygen and that he was discharging me. She insisted I did need it but he still said
no. So I was discharged.
Two days later I had to go to the emergency room because I was coughing so bad and couldn’t breath. The doctors
were worried that I had a pulmonary embolism and gave me two shots in my stomach to break it up. I was also put
on antibiotics for pneumonia. They also did a lung scan, X-ray and two CT scans. I was there for a day then went
home.
Two weeks later I was called into my Doctor’s office and he told me that I had Fibrosing Mediastinitis, not cancer as
they thought and that I would still have to have my lung cut out. He said he would not do it as it’s a hard procedure
to do with the FM present. Also the survival rate was very low. He told me I needed to go to either Barnes hospital,
St Louis; Mayo clinic, Rochester ,Minn.; or Cleveland clinic, Cleveland, Ohio for immediate treatment. I also told him
that it was harder for me to breath now since the surgery and that I get completely out of breath just walking up
stairs or taking a shower, even just doing little things, also I had developed a lump in my abdomen that really hurt,
His response was that it had to be done.
I went to see my pulmonary doctor and he read the recent reports of the biopsy’s and agreed with the other Doctor
that I needed to go to get treatment immediately. He told me the average life span for someone with Fibrosing
Mediastinitis is six years after diagnosis. He told me to go to Cleveland Clinic; Cleveland, Ohio.
I drove up to Cleveland, Ohio and was there for about two and a half months living in a hotel, and my doctor at
Cleveland Clinic treated me for asthma, gave me yet another CT scan, put me on prednisone for two months, gave
me asthma medications and told me there was nothing he or anyone can do for my fibrosing Mediastinitis, and that
it would get worse as time went on. I’ve never been diagnosed with asthma before in my life. He also told me that the
lump in my abdomen was a hernia from coughing. I drove back home still with no answers.
Once home I went to see my primary care Doctor and he was able to read all the reports look me over and ask me
all my symptoms. I told him about my troubles breathing and he ordered some more tests. A nurse came to my
house and monitored my oxygen level at rest, while walking, and left the machine that would record my levels while I
slept. The results of this test didn’t come out to good so my Doctor ordered me on oxygen at all times. It helps so
much. I still get out of breath from doing things but get it back quickly.
After all that I went through I was able to go to the Fibrosing Mediastinitis Conference and I learned a lot more than
I did from any of my previous Doctors and I now Know what Doctors to go to for this.
That’s pretty much it for my story, for now.
