REBECCA:
I will never forget the day that this all started back in 2002, I was 27 years old. I had been home sick from work
with a cough that would not go away. Apparently I wasn't feeling too bad because I was laying out enjoying the
beautiful day My doctor called and said that my ct scan had shown a mass on my lung. Of course I freaked out
and asked if it was cancer, which he stated was a possibility. I had a biopsy done and then a thoracotomy. During
my surgery, the surgeon realized that it was not a "normal" mass and stopped. The "good" news was that it wasn't
cancer so my mind was put to rest...for awhile. I was referred to the Mayo Clinic where it was confirmed that I had
FM with SVC syndrome. Other than the cough and some "head rushes" when I bent over, I did not have any
symptoms that seemed to bother me. I followed up with Mayo off and on and had pretty much the same
symptoms just a little more often. Once again, we discussed some options of treatment but I didn't feel the need
to start any and was told to return in a year. That was in 2005 and I never went back. In March 2007, I started a
different position within my company where I have many more physcial demands. One day after work, I decided to
go running with my daughter while she rode her bike. I ran two blocks and started having terrible chest pain. I was
coughing like crazy to the point where I thought I was going to throw up. As the days went by, I started to have
more head rushes from bending over, horrible headaches and that pressure in my chest would not seem to go
away. I had also went to visit my brother and his family earlier in the month. When I was playing with my nieces, I
would get so short of breath and turn almost purple. This happened when I was playing with my daughter as well
or doing laundry, etc. It was so frustrating!! I have had symptoms like this in the past but not as often. I ended up
going to the doctor and my EKG came back abnormal so I was sent to do a stress test and ct scan. The ct scan
didn't show much of a difference with my FM and the test stress was normal. At this time, my doctor sat me down
and asked me what was really going on! I about lost it! I started to think that maybe this was all in my head. How
could my symptoms be so much worse if the ct scan didn't show much of a change? Well, anyway, my insurance
will not cover my visit to the Mayo clinic anymore so I was sent to a local pulmonologist. They did a venogram
which showed that my SVC was completely crushed but my body has been making collateral veins over the years
to compensate. It was bitter sweet because I finally had someone who could give me a reason why I am feeling
this way but at the same time is not able to help me. I was then referred to Iowa City because my local surgeon
said he had never seen anything like this and would not be able to put in a stent. I saw a specialist in Iowa City
who ran more tests and talked with me. She agreed that the average person with this disease lives about ten
years. Well, I was diagnosed 5 years ago so the doctor said yes, I am dyeing and I should get arrangements
made for my daughter because I won’t be around as long as I planned!!! Well, it is very encouraging to see how
many of you have proved that prognosis to be wrong! Anyway, I go back to Iowa City next Tuesday to talk to the
actual surgeon there to see if he is able to do the surgery.
UPDATE:
August 7th, I went to Iowa City and had 4 stents put in my svc around 2pm my parents drove me home the SAME
night at 6pm!! My vision seemed to improve and my parents stated that my face looked thinner. I no longer am
getting so confused or dizzy with every move I make! I was sick for a couple of days after so I didn't eat much and
was vomiting quite a bit. That caused me to become dehydrated and I started feeling light headed again. I
freaked out and thought maybe the stents weren't working but my blood pressure was running extremely low...
80/60 so that is most likely the reason. Today, not even 2 weeks after my surgery, I went walking/running with
my daughter! I was able to run a couple of blocks without getting dizzy, turning purple and NO
coughing fits!!! It was wonderful!! I actually wake up in the morning wanting to get out of bed and start the day
because the horrible headaches and chest pains are gone! Who knew bending over to pick up my daughter's
dirty socks could be so fun! Ha! I go back for a follow up in 3 months...Right now I am taking 81mg aspirin and
75mg of plavix. In 6 months if all is going well, I will be able to stop taking the plavix. Hopefully things will only get
better from here!
I will never forget the day that this all started back in 2002, I was 27 years old. I had been home sick from work
with a cough that would not go away. Apparently I wasn't feeling too bad because I was laying out enjoying the
beautiful day My doctor called and said that my ct scan had shown a mass on my lung. Of course I freaked out
and asked if it was cancer, which he stated was a possibility. I had a biopsy done and then a thoracotomy. During
my surgery, the surgeon realized that it was not a "normal" mass and stopped. The "good" news was that it wasn't
cancer so my mind was put to rest...for awhile. I was referred to the Mayo Clinic where it was confirmed that I had
FM with SVC syndrome. Other than the cough and some "head rushes" when I bent over, I did not have any
symptoms that seemed to bother me. I followed up with Mayo off and on and had pretty much the same
symptoms just a little more often. Once again, we discussed some options of treatment but I didn't feel the need
to start any and was told to return in a year. That was in 2005 and I never went back. In March 2007, I started a
different position within my company where I have many more physcial demands. One day after work, I decided to
go running with my daughter while she rode her bike. I ran two blocks and started having terrible chest pain. I was
coughing like crazy to the point where I thought I was going to throw up. As the days went by, I started to have
more head rushes from bending over, horrible headaches and that pressure in my chest would not seem to go
away. I had also went to visit my brother and his family earlier in the month. When I was playing with my nieces, I
would get so short of breath and turn almost purple. This happened when I was playing with my daughter as well
or doing laundry, etc. It was so frustrating!! I have had symptoms like this in the past but not as often. I ended up
going to the doctor and my EKG came back abnormal so I was sent to do a stress test and ct scan. The ct scan
didn't show much of a difference with my FM and the test stress was normal. At this time, my doctor sat me down
and asked me what was really going on! I about lost it! I started to think that maybe this was all in my head. How
could my symptoms be so much worse if the ct scan didn't show much of a change? Well, anyway, my insurance
will not cover my visit to the Mayo clinic anymore so I was sent to a local pulmonologist. They did a venogram
which showed that my SVC was completely crushed but my body has been making collateral veins over the years
to compensate. It was bitter sweet because I finally had someone who could give me a reason why I am feeling
this way but at the same time is not able to help me. I was then referred to Iowa City because my local surgeon
said he had never seen anything like this and would not be able to put in a stent. I saw a specialist in Iowa City
who ran more tests and talked with me. She agreed that the average person with this disease lives about ten
years. Well, I was diagnosed 5 years ago so the doctor said yes, I am dyeing and I should get arrangements
made for my daughter because I won’t be around as long as I planned!!! Well, it is very encouraging to see how
many of you have proved that prognosis to be wrong! Anyway, I go back to Iowa City next Tuesday to talk to the
actual surgeon there to see if he is able to do the surgery.
UPDATE:
August 7th, I went to Iowa City and had 4 stents put in my svc around 2pm my parents drove me home the SAME
night at 6pm!! My vision seemed to improve and my parents stated that my face looked thinner. I no longer am
getting so confused or dizzy with every move I make! I was sick for a couple of days after so I didn't eat much and
was vomiting quite a bit. That caused me to become dehydrated and I started feeling light headed again. I
freaked out and thought maybe the stents weren't working but my blood pressure was running extremely low...
80/60 so that is most likely the reason. Today, not even 2 weeks after my surgery, I went walking/running with
my daughter! I was able to run a couple of blocks without getting dizzy, turning purple and NO
coughing fits!!! It was wonderful!! I actually wake up in the morning wanting to get out of bed and start the day
because the horrible headaches and chest pains are gone! Who knew bending over to pick up my daughter's
dirty socks could be so fun! Ha! I go back for a follow up in 3 months...Right now I am taking 81mg aspirin and
75mg of plavix. In 6 months if all is going well, I will be able to stop taking the plavix. Hopefully things will only get
better from here!
