I left Boise at 5:00 in
the morning on Saturday October 2 to travel to Rochester, Minnesota. I had appointments set up beginning Tuesday
October 5th until whenever they got done with me. I drove to Gillette, Wyoming and spent the
night at a Motel 6 (with a 5 star rating).
A very basic hotel with a comfortable bed. The next morning I was up early with hot
coffee in hand and back on the road. I
arrived in Rochester at 6:00 Sunday evening.
I gave myself an extra travel day and I was glad I did because it was a
long drive and I was exhausted. I rested
all day Monday and then Tuesday morning at 6:45 I was at the Mayo Clinic
waiting to be seen for my first appointment.

I was thoroughly examined
and tested from the top of my head to the tips of my toes. They collected 10 vials of blood and a cup of
urine, CT scanned and MRI'd me, slapped on some monitors, asked a gajillion
questions and practically had me doing everything but stand on my head. I asked a ton of questions myself, expressed
my own concerns and laid it all out on the table. After twelve days of that we came up with
some answers.
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| MRI |
I have Fibromuscular Dysplagia (FMD) and I'm lucky enough to be on the end of the spectrum where
it causes problems. FMD mainly affects
your arteries making them thin and weak in some areas and rigid in others
causing them to bulge and often times tear or dissect. I have extensive FMD in my carotid and
vertebral arteries with signs of tearing and a flap of torn tissue in my left
carotid that would correlate with a possible aneurysm, my colossal nosebleed
event at work one year ago. Because I
did not receive the proper medical care and testing at the time it cannot be absolutely
confirmed, but it is likely. With FMD
carotid aneurysms can include a significant nosebleed. I have mild FMD in my celiac and left renal
artery. In a nutshell, as one doctor put
it, I have been blessed with really crummy plumbing.
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The waiting areas are amazing They have volunteers that come in and play these pianos |
The Mayo Clinic does not
believe I have Lupus. Although I do have
four of the markers that would lead to a diagnosis of Lupus (apparently four
is all you need to be diagnosed as having Lupus) with further testing they are
more inclined to believe I simply have a hyperactive immune system, but for me
to have both Lupus and FMD would be exceedingly
rare. Not impossible, but very unlikely. I am completely fine with that idea. I do not need
to have Lupus.
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| CT |
I do have a PatentForamen Ovale (PFO) defect in the left chamber of my heart, which is not
causing any issues and will not require surgery. The PFO is not believed to have caused my
stroke at age 19, but rather the FMD was likely the culprit although that cannot
be completely confirmed. I've also had
three additional very small strokes in my lifetime since then as is seen on my
brain MRI, but they appear to be quite old.
There is no evidence of anything new.
Will I have another stroke? They
cannot tell me that.
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| FYI - I have abs just like this |
I also have Paroxysmal Supraventricular Tachycardia(PSVT) which came on not long after the big nosebleed and is
likely related to the FMD although it could also be a completely separate issue
altogether. Every so often my heart just
takes off racing and my resting heart rate is over 100 and sometimes gets up to
200 beats per minute. Along with that my
heart will frequently will skip a beat, Premature Ventricular Contraction (PVC), however they feel this is relatively benign
and told me not to worry about that. I
can tell you it definitely does feel weird.
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| Echocardiogram |
I have evidence of three
myocardial infarctions on the MRI and I still have myocarditis which
appears unchanged from the MRI that was done in April. A viral panel done while I was in the
hospital came back negative which negates the initial diagnosis of viral
myocarditis. So what caused the myocarditis
and my three cardiac events? And. Will the myocarditis get better?
In reviewing all of the
Mayo Clinic's findings and a lengthy discussion with my cardiologist last week
we have come to the conclusion that I have stress induced myocarditis. There is no other etiology that would suggest
otherwise. At this point, where there
has been no significant change, it is still possible the myocarditis will
reverse itself, but it might not. Am I at
risk of another heart attack? No one can
answer that. Maybe, maybe not. I'm voting not. As far as heart attacks go, this is the best case
scenario as it does the least amount of damage, so I've got that going for me. 😊
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| With FMD the arteries are bumpy instead of smooth |
Other than the FMD and my
heart issues I am a very healthy post menopausal woman with no reason to expect
that I would have a cardiac event, or three, and yet I did. So what do I do now? That is yet to be determined. In the meantime I will take the medication
prescribed (I am trying a new one) for the FMD and PSVT and carry on.
You are now officially up to date.
You now know what I know. Hey, at
least we know!
Thank you, thank you,
thank you for all of your support. Your
prayers, your kindness, your love and good wishes have been the best medicine
of all. You wonderful people have made
things so much better for me, I cannot tell you enough how much I truly
appreciate each and every one of you. I
cannot imagine going through all of this without you all in my corner. Thank you.