GOING TO MAYO!!!!

[Mermaidatheart]

I am so excited! I will be in Rochester, MN next week for a full week of labs, imaging, and doctor visits for APS and my strokes at the Mayo Clinic. I finally feel as though I will have left no stone unturned in my journey for health and well being!

✈️😀

[KellyInTexas Administrator]

Excellent!!!

With you in spirit all the way!

You live in which state?

[Mermaidatheart in reply to KellyInTexas]

The sunshine state, Florida.

[KellyInTexas Administrator in reply to Mermaidatheart]

I thought that was it, but couldn’t remember for sure.

Glad your going now while before you need full snow gear! 🤣

[HollyHeski Administrator]

brill - hope you get the answers you are looking for. Please share...

Hope the week isnt too taxing xxx

[Mermaidatheart in reply to HollyHeski]

I will update after the week is finished. I am hoping I weather the week well....

[kiminabmw]

Wonderful. Please update when you can!!

[Mermaidatheart in reply to kiminabmw]

Will do!

[MaryF Administrator]

Great news, well done for persevering. MaryF

[Mermaidatheart]

UPDATE regarding my Mayo visit. So excited and fascinated by this hopsital/clinic!! Not sure if being excited about finding more issues is good or not...but I am! I finally have some answers that make sense. Here goes....

The week included blood, urine tests, chest xray, holter monitor, loop recorder info retrieval (I have one implanted already) and electrocardiogram. I was knocked out for a TEE (transesophageal electrocardiogram). Basically a scope down the throat to see the heart from the back side and for a deeper look at the inner workings of the heart. More blood tests as something was not adding up from my blood work done on 8/29 at Jacksonville Mayo (this was a visit to Neurologist, whom I love!! She is pretty cool).

First up as far as doctors:

Dr. Duarte, rheumatologist (basically my primary care Dr as far as my APS goes)

Dr. Casanegra, cardiovascular disease

Dr. Evans, "regular" cardiologist

Dr. Anderson, pediatric, adolescent cardiologist, also works on grown ups, but primarily kiddos

Ok, so all along I knew I have primary APS that was found after my 2018 stroke. Also believing I had only one of 4 markers (LA)

Found out that I have 3 of the 4 markers, strongly positive APS.

-LA

-beta 2-glycoprotein I (beta 2-GPI)

-anticardiolipin antibodies (aCL)

The one I do not have that is fairly new:

antiphosphatidyl serine antibodies

I did find out that I now have a positive Lupus marker, but without any symptoms for now...thankfully.

I also have been found to have a hole in my heart detected by the TEE at Mayo that has gone undetected by any doctor here in FL. This hole can be repaired, which will be done when I return to MN Mayo for that (scheduled on 9/27).

Apparently it is an unacceptable reason to say: we cannot say why you had the second stroke while on anticoagulants and your INR level is perfect at 2.7 (my range for INR is 2.0-3.0) or where it came from.

So the hole in my heart is significant enough (but undetected by doctors in FL) to let clots from the right to left side of my heart to then enter my body. Side note: every person has clots at one time or another, think of a bruise.....a clot under your skin) When the clots are done their job, they are released in your body through your veins from the right or lung side of your heart, to be filtered, move to the head/body side, left of you heart to then be filtered more and be reabsorbed.

So with an immune disease (APS, and SLE, on board just waiting for its turn) and a hole in the heart....spells more strokes, small or significant. I can take medication to keep the lupus at bay so to speak, hydroxychloroquine, HCQ. That will be decided.

I am also involved in a five year study now for APS to help figure out reasons why APS develops and for future treatments, etc. So every year I return to MN (they are the only place that has this particular blood testing.....anywhere, even the other two main Mayo clinics) to give a blood sample. The sample is sent to Michigan for the study.

I have a video final appointment after all the doctors bring my case to the board and formulate a group decision regarding my treatments from here and to the end of my life. That is on 10/14.

Side note: I have had blood tests I have never even heard of and had to google. I was not tested for lupus in FL. If that had not been found, in 2 yrs I would for sure be full in on lupus.

There are many more details, but that is for the most part. Sounds weird, but this was exciting and fascinating for me!

Told one doctor we have never experienced health care like this before, he said you have never experienced top tier health care before.... he is correct. I just cannot say enough about Mayo. Each doctor appointment lasted at the very least 1 hour or more. The last doctor apologizing for making us wait 10 minutes as he had just finished his latest surgery. The speed of which appointments were scheduled. The heart doctor sat with me, pulled up his schedule on the computer and made the appointment for the repair...how unusual is that?! Every doctor I met was just wonderful and asked several times if I had any more questions. I did not feel rushed or as though my time with the doctor was done. The all sat, listened, and answered any and all questions.

I will use this site as my google review: 20 stars., at least....

Any way I could go on but that is most of it...