What I Now Know

 

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.

 

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.

 

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.

 

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.

 

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.

 

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.  😊

 

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.