Update on Mayo visit

[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...

[Lure2]

A very interesting info about your APS! We learn so much from eachother. The 4th marker I have not heard they make to diagnose APS though.

You are very well being taking care of now. One thing I do not understand. As I am also triplepositive with high titres I have always learnt that those with APS like us need a higher therapeutic range than 2.0 - 3.0. But you are also Lupus/SLE positive I understand and use also Hydrocloroquine. Hope I understood that correct. I am from Sweden you see.

For me beeing LA positive it has always been difficult to keep between 3.5 - 4.0 in INR which is my present therapeutic range. As I selftest very often at home and monitor my own INR, I have succeeded in keeping the blood fairly ok. Finally after many years I have learnt my job. For me Warfarin has been my life saver. I also take a Fragmin-shot when my INR is under 3.5.

Good Luck!

[Mermaidatheart in reply to Lure2]

I have given a type of blood test (that I never knew even existed). This blood test shows how the warfarin is working in my blood with my APS & SLE and it shows a range of what my INR should be or works well for my body. For me that is 2-3. I wish I could figure out which test that was and the name of it. I think I will message the nurse of that doctor and find out the name of that test.

I self test as well and fortunately I am able to keep it stable.....for now!

I believe the test is called: factor x chromogenic activity assay

I am waiting for confirmation on that

[Raw57 in reply to Mermaidatheart]

I would love to know the test name. It’s very interesting. I appreciate your review of your time at Mayo. I have a negative feel for the place because of the experience of friends who have Thoracic Outlet Syndrome who were treated very poorly at the MN Mayo. It’s good to know some conditions are taken seriously.

[Mermaidatheart in reply to Raw57]

Thank you! My experience has been wonderful, sorry to here about your friends experience.

The name that the test was labeled was the factor x chromogenic activity assay. The doctor responded to me and she called it chromogenic factor x.

I will update my visit again at Mayo after my heart repair for the hole in the PFO. According to Mayo that is:

A patent foramen ovale (PFO) is a hole in the heart that didn't close the way it should after birth. The small flaplike opening is between the right and left upper chambers of the heart (atria).

Some are worse than others, some people at birth did not have this flap and need surgery quickly.

See for info: mayoclinic.org/diseases-con...

(copy & past as I am unsure how to turn this into a link here)

[Raw57 in reply to Mermaidatheart]

My son had his PFO closed after a pulmonary embolism. He had several DVTs in his leg prior but no one thought the PFO should be closed until

He had the PE. He has the Prothrombin gene mutation plus corrected club feet and Mays Turner Syndrome. These issues cause him to clot

According to my son the PFO closure was painless He stayed over night after the procedure then as back to normal I pray for you it is the same 😊❤️

[Mermaidatheart in reply to Raw57]

Thank you!

[baba in reply to Mermaidatheart]

link to an article re factor x chromogenic activity

ncbi.nlm.nih.gov/pmc/articl...

[KellyInTexas Administrator in reply to Mermaidatheart]

it is chromogranin factor x assay. At least that’s one test… I’ve spoken about it here many times.

It’s a way to test to LA if you are on warfarin.

( especially it it comes and goes / in and out of positivity.)

It means that your actual inr , or true inr , is what the chromogenic factor x is. It will read lower sometimes than what your normal inr reads. For me , it means I am under coagulated. I need to have it drawn at a facility where I get results from chromogenic factor x that same day just like the inr to make the conversion. Are you sure they want the INR at 3?

Great job at Mayo! Glad to hear all this news!

My docs are sending me to Michigan to Prof. Knight. The referral is being sent in about a week. ( I clotted again on Sept 3rd with another DVT.)

You will be in great hands with your PFO closure. This will help you so much.

Bridging to lovenox for surgery is a piece of cake😉. It really is.

Im excited for your next step to better health!

[Madmumma in reply to KellyInTexas]

sorry to hear that. Good luck!

[Mermaidatheart in reply to Madmumma]

Thank you.

[Mermaidatheart in reply to KellyInTexas]

Yes, all doctors agreed on 2-3 range.

Thank you!!

[Hidden]

mermaidatheart hello, do you mind sharing which Lupus marker have made them out you in HCQ ? As some Lupus markers are also widely seen with primary APS patients. For example anti chromatin and Anti dsdna.

[Mermaidatheart in reply to Hidden]

The marker (that I can decifer) is: Antinuclear AB, Hep-2 and DSDNA AB with reflex, IGG, S (name of the actual test...), maybe the one as well: connective tissue cascade (again the name of the test).

Hopefully I have answered you question correctly!!😀

[GinaD]

I too have heart issues: a congenital a fib inherited from my Father, and a mitral valve prolapse. I had 2spooky events last month where I felt -not dizzy, but kinda woozy. A friend told me I looked pale as a ghost. Both times the wooziness went away after 10 minures or so. My Apple watch detected nothing strange at those times. One episode was during a strenuous hike, the other after a bit of car nausea as my friend drove quickly on a curvy road. She stopped soI could walk around and not puke. The nausea went away but that woozy feeling persisted for another 10 minutes or so. Then it was over. We took a couple of very short ( less than half a mile) in the woods instead of the 8 mike hike we had planned. And I enjoyed thise beautiful short walks and agreed, but was saddened by our joint decision that I should not attempt an 8 miler. After I returned home I did call my local cardiologist's office and found: 1, that my doc is taking medical time off, so I spoke with a nurse practitioner, and, 2, they said they would send me a heart moniter to wear for a week. That was 2weeks ago and that monitor never showed up. I suspect I will need to drive 4hours to Cleveland Clinic ( which IMO is comperable to Mayo,) in order to get my spooky woozy episodes investigated. The only common denominator behind both woozy episodes is altitude. Both times I was at @ 4300 feet. The doc who diagnosed my APS ( now retired) told me that high altitude may be dangerous for me. But I have visited those Allegheny Mts many times for hiking with no issues. And no other doc has warned me that altitude might be an issue.

[Mermaidatheart in reply to GinaD]

I hope all goes well for you. I have loop recorder implanted in my chest to monitor the heart. I have a device that is plugged in by my bedside, it uses WIFI. Every night when I sleep it downloads the days activities. I also have a moderate mitral valve.

Funny you mention Cleveland. The doctor at Mayo informed me that when I was deciding to have the surgery it should be a major hospital/clinic and he mentioned Cleveland.

I have specifically repeatedly asked about altitude as I love to visit Crested Butte, Colorado. This area is at a decent altitude. I was never told to avoid altitude. I have flown in airplanes several times as well, no problems other that getting stuck in a middle seat!

[kiminabmw]

WOW, sounds like it was worth the trip!! Mayo clinic saved both my Father and my Sister, many years ago. I think things have changed since my Father/Sister were there 50 years ago. May I ask, did you need a referral to go to Mayo (MN)? Any info would help, thank you.

[Mermaidatheart in reply to kiminabmw]

Thank you, it was!!

I actually started by calling Mayo in MN directly. I did have to do leg work to collect all my medical records. Paper records were able to be faxed directly to Mayo. Any images I asked for on CD to carry with me for Mayo to download that way.

I think it helped also that my rheumatologist asked if I was ok to travel outside of my local area to visit a neurologist (which he highly suggested). He then gave me a referal to Mayo Jacksonville. At that point I was in the "system" so to speak. That did not mean I would be approved to visit Mayo MN.

So after all records are received at Mayo, my case then went to triage to determine if I am accepted, and I was. Needless to say I was super excited!! Unreal that after I called and requested (if possible) that all appointments be scheduled during the week I was there. I told them I was traveling from FL and I would do any tests requested of me. Amazing that happended. Sometimes I had new appointment booked the same day while I was there.

Ok, my first cardiologist was 85 1/2 yrs old! He told me so! Can't be fooled by his age at all. He has been a doctor for 61 yrs, 51 of which have been with Mayo MN. I spent 1.5 hrs with him. He personally called the other doctor to schedule the final appointment that same day.

[Tired34]

do you know if Mayo mn is also involved or looking for APS study volunteers?

[Mermaidatheart in reply to Tired34]

I am actually participating in a 5 yr study. It does require a yearly blood test (that is all) at MN and nowhere else. Only MN has the blood test (as of now) required for the study.

[MaryF Administrator]

What a great update to your situation, so pleased you are finally in the right place and having such detailed care, well done! MaryF

[Mermaidatheart in reply to MaryF]

Thank you very much!!! I must say the doctors were very pleased that I was educated about APS. I have to a lot of credit to this site, the links to various webinars & reports!

Good job to all the admin!😍

[MaryF Administrator]

Thanks for the feedback, nice to hear, we appreciate it, all of us. MaryF