Tuesday, November 2, 2021

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.

 

 

32 comments:

  1. 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.

    I am glad you are back home and finally have some answers. Take care!

    ReplyDelete
    Replies
    1. 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

      Delete
    2. Claudia, so very sorry for your loss. Wishing you comfort and peace.

      Delete
    3. Claudia,
      I 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.

      Delete
  2. Best wishes to you on your health! I overwhelming? But good to have answers.
    Susan
    P.S. Nice abs!

    ReplyDelete
  3. Wow!! 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!!! 😉

    ReplyDelete
  4. So glad you finally have some answers! Praying for healing for the past events and smooth sailing going forward!

    ReplyDelete
  5. I'm so happy you were able to get answers & how fascinating about the lupus diagnosis.

    Sending you lots of good thoughts for rest, relaxation & the peace you need to recover & get back into the swing of life.

    ReplyDelete
  6. Im so glad that you have gotten some answers and hope that you are feeling well. Continued prayers! :)

    ReplyDelete
  7. So glad you have some answers and glad you are back. Take care of yourself and just enjoy life :)

    ReplyDelete
  8. My 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!

    ReplyDelete
    Replies
    1. No kidding! I think we have a much better game plan now.

      Delete
  9. Oh 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.

    ReplyDelete
  10. I'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

    ReplyDelete
    Replies
    1. The 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.

      Delete
  11. Holy 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!

    ReplyDelete
  12. Wow! 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 💕

    ReplyDelete
    Replies
    1. I will admit, it was all a bit overwhelming. I am very blessed, to be sure! Thank you very much Shellie.

      Delete
  13. You 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.

    ReplyDelete
  14. I 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!

    ReplyDelete
  15. You 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...

    Cindy Huxtable

    ReplyDelete

Your kind comments are always appreciated. I love hearing from you.

**Note: Comment Moderation has been turned on due to spam.