Anyways so today's Echo before the Appt with Dr.Earing shows the Mitral valve which was replaced some months ago (last Jan.) and had mild stenosis (narrowing of the newly replaced valve) shortly after has worsened to a moderate narrowing in the new valve now.
Dr.Earing does wonder/seem to think this worsening valve issues is related to the Heart rate issues (heart rate at Appt today was apparently 120s-130s I think he said), I am to the point heart rate itself I don't even notice much.
Do I notice secondary symptoms? For sure but to a certain extent have learned to ignore these to, rest when needed or is just a new abnormally normal I guess?
We've been dealing with high heart rate for quite some time, seeming to be worse since this last Open Heart Surgery so where possible I just ignore it. Definitely wears me out/makes me more tired though I'd say some of that to at the moment is related to shunt stuff (is just weird, both good and sucky).
Dr.Earing did say he thinks perhaps once we repeat the Heart Cath/Ablation Study next month (to slow down heart rate essentially by 'frying' (lack of better word comes to mind) the sinus node with the intention being this in turn slows down heart rate) this should help the heart/valve issues.
I am sure I won't get this completely right but the slower a heart beats the more time there is to get good oxygen through the heart and muscle and properly oxygenate the blood which then goes back out to the body. This also allows the heart more time to rest in a sense in between each heart beat when it is slower so at my faster rates the filling times are less adequate and less properly oxygenated blood gets through the heart, brain and body with each beat while also putting more pressure/work on the heart itself. Not sure if that makes sense but makes sense to me. =)
The ablation is scheduled for next month (Dec., my choice to wait, needed a break) with the same Anesthesia (airway) dr. whose done all 3 Heart Surgeries and the prior Heart Rhythm Studies/Cath and the prior ablation.
Same Heart Rhythm dr. (Dr.Kovach) who did the prior ablation and Heart Caths/Procedures as well. He works with my Cardiologist (same clinic) and they communicate so there to everyone is on the same page and involved in making decisions,.. - Atleast this will be an easier procedures than the Open Heart Surgeries and only an overnight stay.
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General Article on Ablation
http://www.texasheart.org/HIC/Topics/Proced/ablation.cfm
Otherwise the weird symptoms from this last of the numerous surgeries/procedures during the shunt infection stay some wks ago is sllooooowwwwllllyyyyyyy improving but biggest things seem to be 1. sleeping upright as much as possible (I always sleep on my couch but I toss and turn a lot so don't always end up actually sleeping upright).
2. As much as possible which is nearly impossible not irritating low back and causing swelling there as that reallllyyyyy seems to affect the LP Shunt and how it drains or doesn't drain or more aptly how it affects vision. I completely don't get it other than the valve which controls fluid drainage sits right along the LP Shunt now vs before it sat a bit separately (connected of course then to but not sitting within my spine) - is very frustrating and actually being totally honest irritating as I want to be able to function normally....
I don't really understand this other than when area gets irritated that really seems to affect my focusing and memory (this ones harder to explain but ability to quickly/easily recall things I know well or have done repeatedly.. Stinks! This improves to as the day goes on. Needless my phone GPS has gotten some use the past 2 wks and I tend to be thinking 1 thing and say something else only to quickly realize my error. At times it's a bit funny albeit seriously so dumb!
I did get new glasses script as this changed after surgery, distance this time whereas last surgery reading (can't think of right word) vision script changed.
Keep the Eye place in business perhaps?
I did make an Appt with my Neurosurgeon (Dr.Iskandar) as I'd emailed him about the symptoms and he wasn't really sure (we all figured this stuff would settle out once I was a little bit out from all the crazy procedures done especially the brain flush to clear the hematoma(s) (unsure if just 1 or was there 2, doesn't entirely matter) and the crazy irritation that caused.
I don't know, I don't think my body really knows what to do after all these procedures, these new shunt placements (the VPL Shunt valve sits at the back of my head so I avoid laying on that to, seems to create symptoms - easier said than done at times!) and all that's going on re post infection recovery.
Phoenix Children's / Dr.Bragg / Hydrocehalus Assoc. Mtng -
This was the Hydrocephalus meeting I'd planned to attend last month in AZ, though was unable due to the unexpected/sudden hospitalization due to shunt infections and 4wk stay. - Anyways if you listen or go to 64.47 approx. in the video where Dr.Bragg begins speaking.
She speaks about Hydrocephalus, a bit about my MPS and Hydro at several pts and overall a good talk/talks.
https://www.youtube.com/watch?feature=youtu.be&v=UqrzqzxaZck&app=desktop
I did go back to Sunday School this past wk, so weird but I'd been there the 1st wk and then was gone wks 2-6 but was GREAT to be back! It ended up due to the holiday (Halloween/Reformation we had a group class so I group taught with a friend and her class (1st/2nd, I have 3rd/4th) which actually was good as my brain was so off that morning but overall really, really nice to be back!
Will update sometime soon - Thanks for stopping by,
Erica
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