HEATHER:
I was diagnosed with Fibrosing Mediastinitis in June 2001 at the ripe old age of 27.
____________________________________________________
Area of compression: Superior Vena Cava (98%)
____________________________________________________
Other diagnoses unrelated to FM:
hypothyroid - 2001
____________________________________________________
How it all began:
In approximately August of 2000 I started having days where I would feel "full"...you know those days (at least you girls do) where you
feel bloated, full and just plain fat? It wasn't everyday, but as time progressed, my "full" days became more and more frequent and with
time, the feeling of "fullness" became a feeling of pressure - pressure in my chest, pressure in my head and neck. By November and
December I would wake up with puffy eyes and swollen upper extremities. I had a few odd bouts of dizziness - the room would just spin
and the floor would drop out from beneath me.
Things got worse:
After Christmas, all the symptoms became worse. Daily, I would wake with a swollen face, neck and upper extremities. My eyes would
swell to the point of bruising. I looked like a football player - my neck was wider than my head! I had a heavy pressure on my chest and I
would have moments where my neck felt so restricted - like someone was choking me. I was embarrassed to go anywhere. I looked
like a bloated freak, not to mention my vision was blurred, my concentration and memory were very poor, and the bouts of dizziness
were frequent.
I finally sought help...and the nightmare began:
Through the course of all this, I had no health insurance, so I had not gone to a doctor to complain of my symptoms. I didn't work over
Christmas and when I went back to work on January 5th, 2001 a co-worker said, "My God, Heather, you look like you've been stung by a
bee!" My face was so swollen I was barely recognizable. I finally called a doctor. Dr.Idiot prescribed me inhalers (for the difficulty
breathing), coritsone pills (for the swelling), allergy meds and sent me for bloodwork. I also went to see my dentist because I had pain
from wisdom teeth and thought MAYBE that was causing some of the swelling. I had the wisdom teeth pulled, followed with an infection
in my left cheek from the surgery - so now I not only looked like a bloated freak, I now looked like a bloated freak with a golf ball in her
left cheek.
A False Sense of Relief:
On January 17th I was diagnosed with hypothyroidism - which explained some symptoms, but not the difficulty breathing. I was sent to
an endocrinologist who put me on synthroid and on a diuretic. He lectured me on salt intake and my weight. I left his office, started
taking synthroid and the diuretic, watched my salt intake and didn't have symptoms again for almost three months. The synthroid
helped my fatigue and the diuretic helped my swelling and my breathing. For the first time in months I didn't feel like leaping off of a tall
building. I thought I was finally cured.
Tests, tests, and more tests:
By May symptoms were returning...and I returned to the original Dr.Idiot. I took him pictures - of my face - before I had these bouts of
swelling, during the bouts of swelling and after. I told him it was back and it was not my thyroid and I needed HELP. He first ordered me
to see an allergist.
This allergist tested me for everything - dog, cat, dust, mold...I am allergic to nothing. Because he could find nothing, he told me that if I
"quit thinking about it, it won't be so bad and will probably go away"...he told me it was all IN MY HEAD!! I was furious!!!
I went back to Dr.Idiot and told him I would be taking my own life...life was NOT worth living in my condition. He FINALLY ordered a chest
x-ray. Two days later, the chest x-ray came back abnormal - it showed a widened mediastinum and the recommendation was for a CT
of the chest. CT of the chest came back abnormal - there was narrowing of the Superior Vena Cava. Dr.Idiot referred me to a vascular
surgeon. Vascular Surgeon said, "why did Dr.Idiot refer you to me? You need to see a pulmonary doctor."
My hope were dashed...I had been run through the mill, I had been told I was nuts, I had been looked at and poked and prodded...and
now that there was finally evidence of something being wrong they couldn't even send me to the right place for help! And then...
I met my savior:
Dr.Stites. He was the first physician to LISTEN to me. He was the first to not shake his head, grin, and say, "well, if you'd lose some
weight..." or "if you'd quit thinking about it, maybe it would go away" or "you don't look that swollen and besides, girls swell". He listened,
he empathized, and then he gave his opinion of what he thought it may be and what my options were.
My "procedures":
I first had a venogram and angioplasty. I thought I was scheduled for just the venogram (where they inject contrast and see how if flows
through the veins), and that I would be in and out...but once there, they informed me that if there was a blockage they would do the angio
as well. They said they wanted to hold off on a stent placement to see if and how well a simple angioplasty would work - they hoped that
by pushing the walls of the vein open with a balloon and thus pushing back the calcified nodules it might stay open on its own.
The angioplasty itself was a very bizarre experience. They drugged me up, but I had to stay awake so that I could follow instructions like
holding my breath or taking a deep breath, etc. Luckily they only had to go through my caratoid artery to reach the blockage in the SVC
and not through the thigh. You don't feel much, other than movement as they enter the neck, but when it reaches the blockage there is
TREMENDOUS pressure. It felt like a million pounds crushing down or through my chest - the pressure is so broad it's hard to explain
or narrow it down to a specific area. I had a whole 'student' surgical team helping and watching with one main doctor doing the
procedure. After the procedure I was taken to the recovery room where they removed the ?? (I call it the snake or tube - they thing they
insert through the vein and run the balloon through)...When they pull that thing out of your neck it is the weirdest most sensational
feeling ever....there's no describing it.
Later some of the team showed me before and after pictures from the venogram - before the angio and after - it was WOW! In the before
shot I could see the blood flow through the SVC and then narrow down to nothing and all the little ?? veins pick up the slack (the blue
veins you can see in your chest through your skin). In the after picture all those little veins disappeared as there was this nice, long,
strong flow of blood throught the SVC. They said I had been 98% blocked. Fascinating!
I stayed overnight after the angioplasty. I remember Dr.Stites coming in to see how I'd done and me telling him, "I can see!" He laughed
and said, "you haven't had blood to your brain so things probably are a little clearer now!"
I felt wonderful for about 2 months and in July went back in for another venogram. Before hand they told me that if the SVC had narrowed
off again, they would just run the balloon through and place a stainless steel stent. I had a feeling, due to my symptoms that they would
go ahead and place the stent, so I asked to see what one looked like. It was a little metal mesh like tube - nothing to it. We did the
venogram, they found more blockage (but not near as severe as the first time and therefore the pressure in the chest during the
procedure was not as bad) so they placed the stent. I went home THAT day!
Follow-up:
I had one venogram after the stent placement to see how things looked and I have had a few CT's to make sure there's been no
progression of the FM. I go in once a year now for a CT. SIX years it's been already! I hope the ending to the story stays just the way it
has for the rest of my life!
The End!
UPDATES:
Since my successful stent placement in 2001, I have had a daughter, Elena, in March 2005. I had a very healthy pregnancy with no
complications and Elena had a healthy, cesarean birth.