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.
I am sorry I have been MIA. My husband went on Hospice at home on September 1 and died on the 16th. He had Pulmonary Fibrosis. Those were a hard 16 days. I am still dealing with paperwork and will be for a while. He was a collector so there are many things to sort through.
ReplyDeleteI am glad you are back home and finally have some answers. Take care!
I am so very sorry to hear about your husband. I wish I could give you a hug and a helping hand. Take care of yourself. XXX
DeleteClaudia, so very sorry for your loss. Wishing you comfort and peace.
DeleteThank you so much ladies!
DeleteClaudia,
DeleteI am so sorry for your loss. Praying for peace. Loss and grief are hard things. I hope you have many wonderful memories of your husband and he will live on in your heart. Take care of yourself.
Best wishes to you on your health! I overwhelming? But good to have answers.
ReplyDeleteSusan
P.S. Nice abs!
LOL Thank you Susan.
DeleteWow!! It sounds like you had a very thorough work up ! I’m glad you have answers and a path forward, Now to destress your life!!! 😉
ReplyDeleteIt really was. And yes, remove that stress load!
DeleteSo glad you finally have some answers! Praying for healing for the past events and smooth sailing going forward!
ReplyDeleteThank you so much Lynda.
DeleteI'm so happy you were able to get answers & how fascinating about the lupus diagnosis.
ReplyDeleteSending you lots of good thoughts for rest, relaxation & the peace you need to recover & get back into the swing of life.
That one did surprise me.
DeleteI like this plan :o)
Im so glad that you have gotten some answers and hope that you are feeling well. Continued prayers! :)
ReplyDeleteHaving answers has helped tremendously. :0)
DeleteSo glad you have some answers and glad you are back. Take care of yourself and just enjoy life :)
ReplyDeleteI will! Thank you so much Tania. :)
DeleteMy goodness, that must be a lot to take in! But isn't it fantastic that you have access to that kind of medical treatment! You're right - it is better to know than to keep wondering. I'm praying for you that know they know they can keep on top of it and you will sail through all this!
ReplyDeleteNo kidding! I think we have a much better game plan now.
DeleteOh wow, I am so sorry. I have never heard of FMD before, but I'm glad that you were able to get some answers. I hope the new medicine helps and that you don't have any more heart problems. Sending hugs and prayers.
ReplyDeleteI hadn't either. Thank you Kathy.
DeleteI've been praying for you each day. I just read your Monday post about increased cost of ins, etc. for next year. My son's cancer came back and he just had a 5 1/2 hour surgery to remove lymph nodes,tumors from his abdomen followed by 100+ clamps to stop those bleeders. A surgery that cost over $400,000 and he owes 10% not to mention the chemo that will follow once again. As a mom I'm just flat out mad. You have my sympathy and prayers as I now what a struggle this all can be. And pardon my french, but it all sucks!! Take care of yourself, hugs sent your way. Patti Ann
ReplyDeleteThe cost of healthcare in this country could easily bankrupt a family and it often does. That stress on top of the stress of health issues, it does suck. Praying for your son and for you. Take care.
DeleteHoly moley, you certainly did put Mayo through their paces to figure your issues out ;). I am happy you could get all the tests and their opinions on causes and treatment. Thank you for sharing the information. There is a phrase that I use in matters where we do what we can but truly our fate is out of our hands…it is as god wills it. That seems to sum up your health, you can only do so much. With luck, your three early MI’s hopefully are the only ones you will have. Love and healing wishes headed your way!
ReplyDeleteThank you. :o)
DeleteWow! That is a lot to take in!!!! How blessed are you that you could get to the Mayo Clinic and get things sorted out. All of your hard work and preparation for the unexpected certainly paid off. I wish you all the best as you move forward, I love your blog and look forward to reading it every morning! Thanks for keeping us all updated, big hugs from Truro, Nova Scotia 💕
ReplyDeleteI will admit, it was all a bit overwhelming. I am very blessed, to be sure! Thank you very much Shellie.
DeleteYou sure have been on my heart and mind heavily and I am happy you have answers. I pray that you will respond well to treatment sweet friend.
ReplyDeleteThank you so much Candace. It means the world to me.
DeleteI have always found it easier to know what health challenges I am facing. Glad you have a good team on your side and your beautiful daughters beside you through life. Take care and treat your self with love. Remember you are worth it!
ReplyDeleteThank you so much Crystal. I will. XX
DeleteYou went to the best place in the WORLD to get checked out. I hope your treatment works wonders for you! Nothing worse than bad health. Please take care, we need your voice of reason out here in this crazy world...
ReplyDeleteCindy Huxtable