Evan's Journal

Tomorrow is 7 weeks.  Last week had a side stitch that never went away so spent the next night in the ER to check it out... X-Ray, CT with contrast, multiple blood tests and was told that yes, although I may have a slightly collapsed lower left lobe to my lungs I should be fine.  Well it has been 6 days and although I can mostly take a deep breath with only a small bit of pain from where the stitch was but it is still sore.  This has not been fun.
I am trying to walk abit over a mile a day.
Trying to drink more water than I used to.
And then yesterday I think I started getting sick... Probably doesn't help my wife tries to have Sunday dinner with between seven and eleven people one of which is a 5yr old that just started school....   I mean its nice to see them but I think meant to sequester for another month or two...  She does not understand that.



Other than all that I am doing great.  I go back and forth thinking this AVR was basically elective, I probably could have waited another year or so but then I would have been older and, and, and,etc... 

Hope you all are doing well!

Evan

Five days post surgery (7/9/24).... in all ways recovery was going ok, woke early after surgery, walking twice around the floor multiple times a day,etc.. and then today... Had around 6 hours of Afib...omg...not fun.   More later, felt I had to post.

Well I was hoping to go in earlier for the better insurance but it looks like July 9th is the date.
Got my electric recliner (apparently Electric is required per a few people I talked to)
Got a couple of balancing grabs for the shower
Got a recording by my Hypnosis Mentor that I will modify to last 3 hrs then repeat all for healing and state of mind
Got my company HR people informed and my Boss onboard

anyone think of what I might be missing?

As far as I can tell - now to just NOT go crazy waiting and try not to do any more research on the upcoming surgery... (I have no idea how many white papers and institutional studies I have read on this) I do tell myself that most of what I have read is before 2021 and things are sooo much better since then so that makes it much less worrisome.


I do have a question that I cannot find any current information on (last info I found was 2019) if anyone can help it would be appreciated - more for knowledge than anything else...  
In one of the studies I read it mentioned that an Aorta replacement with Dacron has a few issues...  first is the inability to mimic the radial stretching as the blood first enters the Aorta which then translates into an added push after the valve closes and the Aorta contracts a bit... has medical science addressed this or determined it is a none-issue?  the 2nd was a 2ndary question off the first - they found in the study that for a number or reasons the RV experiences a higher workload with the Dacron and as such you get the RV larger than it should be...   With my Regurgitation I already have a 2:1 ratio (RV to LV)  happening so if the Dacron observation is true - will a get any normalization after my valve is fixed or will I stay with a different than 'normal' ratio as time progresses and my heart heals...  if it were just a Valve fix I was told the heart should return to pretty close to 'normal' ratios... but I had not known about the Dacron replacement issues...  (Did I mention I over researched this??)


If anyone has any ideas it would be appreciated

Take Care All - 

Evan

Hi Susan, I replied twice to you but nothing ever posted...
Circulatory Arrest is where they cool you down to a point that not only does your heart stop but your brainwaves stop.... Basically you fulfill all the requirements for being dead... This allows them about 40 min do operate with no blood flow to hinder them and then they warm you back up..

Had the consult... We went over the AVR and then was told that with the ascend aorta of 4.3 that we should do a replacement for that as well... Ok, I took that well and it makes sense.  I am with Kaiser and in their app you can pull up the doctors notes and review them.  I was going through the notes and saw he mentioned they may need to do a circulatory arrest for the Aorta... I did recall he had said something about it but with everything else it didn't register...  And after reading the notes I looked it up. And now I am so much more concerned than just open heart surgery... Has anyone else had this and can you please talk me off the ledge here????

Now for the rest of the story...  My wife is a teacher and in our area teachers don't make much money but they get pretty good health insurance so we use her for insurance.  But in this district they let all the teachers go for the summer and so we are switching at the end of June to my company insurance.  If I can get surgery before the end of the month it will cost me $35.  If surgery happens in July I immediately will max out my max out of pocket and it will cost me $4,000.  Did I mention teachers get good healthcare? So now I have a surgery scheduled for July 9th as a fallback but am on standby for this month I case someone cancels.


Will update more as it happens...

Hi All,

Thank you to those that have posted a reply, sorry it's been a bit and I am just now replying...

Here is an update.  I had a inconclusive echo done with some numbers that made no sense when compared to the others -more an art form to read them than a science apparently- so I had an MRI with contrast...  Results back don't really tell anything new except this time the reader included info on the valve, Left Ventrical AND the Right Ventrical...
Looking back over all the other tests no one ever reported on the RV.  And apparently the ratio is 2:1. Which is interesting since my regurgitation is about 50% - amazing how the body adapts.  So  I asked my cardiologist if we can have a reader relook at past tests to see what it was back then and he basically blew me off... I hate that.  Next week I go in for an Angiogram, not really looking forward to a catheter but then had a thought... I am positive my valve started leaking because I had an intense cough due to covid and in trying to twist/turn to try and clear the phlegm the noise started...  So my thought was, while they are there could they just brush past the valve that's prolapse d and see if they could push it back the other way... The Doctor said they couldn't do that for this one but I should bring that up with my surgeon... Dont have one at this time but will look further into it. Any way, thats the update.

Again, thank you for posting, it all helps!



Evan 

Hi All,

For those with a biological Aortic valve... How was your recovery, are you glad you selected the valve you did and how long ago was your surgery?
For those with a mechanical Aortic valve... Same questions and also how has it been taking blood thinners?
Thank you all for your time on this, I expect I am about 6 months from surgery just from the progression of sound and feel... There are still times I cannot hear or feel the regurgitation and I still have no symptoms. I go for my third 6-month echo in march and will know more then.

I thank all that have posted their tales here online and am still reading more and more of them, they have been a great moral boost! This is one of the most prolonged terrifying episodes I have had and these stories comfort me a great deal.
Again thank you,
Evan