Anna's Journal

Well my TEE I just had on 10/31 at CC, came out differently than the one I had at a local hospital on 7/31. Much better actually - T1 mitral valve and T1/2 in aortic valve. LVEF went up to 50%. So no need for any valve intervention at this time, yeh! But….some blood work came back a little elevated - the NT Pro BNP, that’s a heart failure marker. I have been more SOB since our return from CC, so my local cardiologist recently added both Aldactone and Lasix (low doses) to my medicine cocktail. Has anyone had any experience with this test and SOB symptoms? I guess it’s possible something’s changed in this short time frame. I was feeling so good, and positive and scheduled for total knee replacement next month. But now I don’t know, having second thoughts on this surgery.

Well I finally got my second opinion TEE done at the Cleveland Clinic yesterday.
I was surprised I was only given moderate sedation (80 mg Versed, 200 mcg Fentanyl) and don’t put you to sleep. I was told that they don’t routinely use anesthesiology for TEEs and the RNs cannot administer propofol. My first TEE was 3 months ago (different facility) I got propofol for that and was completely out. This was a very surreal experience as I was awake and dreamy asleep at the same time, felt the probe going down but was not in pain. They did make me gargle and swallow some horrid tasting stuff that numbs your throat. Has anyone else had this experience being semi awake during a TEE?

I’m still in a “watch a wait” mode on the mitral and aortic valve regurgitation, had an echo today that confirmed both are still moderate. But surprisingly the ejection fraction showed  35-40%. That was shocking to me as I’ve been feeling pretty good. And I've been on medicine that was apparently helping the (same 35-40%) low EF on the echo I had in March. I’ve had a stress echo at 51%, a TEE at 55%, and a cardiac MRI at 49%. All of these tests have been done in last 90 days at different facilities. My concern is I really need a knee replacement and may not get clearance now☺️. 

Well the Covid bug has hit again, and my husband came down with symptoms yesterday and tested positive today. He is starting Paxlovid. I am negative thankfully, but waiting for the shoe to drop, 😳. I had covid in July 2022 that caused heart rhythm problems (PVCs) that I’m still dealing with today. Anyone out there get this recent variant? Hopefully it’s not too severe.

I couldn’t attend the Dr. Gillinov mitral valve webinar last night due to another commitment. If anyone attended this, was there any mention if it will be available to view on line at some point?

So I just had my first surgical consult yesterday with U of M, and after 3 weeks of anticipation, I was very surprised when I was told that neither my aortic or mitral was in a severe regurgitation state, and that I would NOT need surgery, not yet anyway!!!!

While I am more than elated, I am perplexed as well. How can his interpretation of the TEE be so different than that of my cardiologist? He still wants me to have a stress echo due to the mild shortness of breath I have with exertion. I imagine I will continue to be monitored closely for any changes. Has anyone else had this happen? Where you’re told you need surgery, then you get another opinion that says no? 

Now I’m not even sure I need to have the TEE repeated at CC?  The U of M doc says it likely will show the same thing, so it may be a waste. The cardiologist at CC that I met with in May (for cardiomyopathy Dx) said he and another Dr viewed the TEE images and also saw only moderate regurgitation; but because the TEE wasn’t a 3d (bio plane) study, they want me to repeat it there, before they even recommend a consultation with one of their surgeons. It is my understanding CC likes to do their own testing. 
 

Getting ready for my first surgical consultation next week on 8/20, which will be at the University of Michigan. Have all my tests, picked up all of my disks, and have a list of questions. Cleveland Clinic wants to do a repeat TEE which is scheduled for 9/24. I know many of you traveled for your surgeries, and I am willing too but I struggle with wanting to be closer to home as I know it will be hard on my husband.  How has distance weighed in your decision? I suppose I need to go with where I feel most comfortable.

Has anyone had to repeat any diagnostic testing, especially if you decide to have surgery at another facility? My TEE was done a couple weeks ago and my husband was told (I was still groggy from anesthesia) that both my aortic and mitral valves have severe regurgitation and I need an aortic replacement and mitral repair. I sent the disk to CC Drs who see the valves as only moderate but they  suggest I repeat the test there due to poor image quality and limited study. 

I’ve had 2 CTAs that show no CAD and no blockages. Is a heart cath always required before heart valve surgery? I am terrified of this and they always have a hard time finding good veins on me to get blood or do IVs. Also I know someone who passed away of complications.

Just joined this group, which looks likes an incredible community of support. Wondering if there’s anyone out there that’s has had dual valve surgery of aortic valve replacement and mitral valve repair?