Linda's Guestbook

Linda Lloyd  Thanks so much Nicola. I’m leaving for further testing at the Mayo Clinic in 2 weeks, and hopefully they’ll have an answer to the “when” question then (I’m guessing that 10 days, 10 weeks, 10 months are all possibilities). Not sure whether they will know from that testing what procedure to do (or will they ?) . I’m hoping for repair (cone or ?) rather than replacement for sure—but do you think they will know ahead of time? XO

Nicola Laker  They will probably know from the tests they do if it will be a repair or replace. I know that my surgeon said that they prefer to repair if they can on the tricuspid valve. Your surgeon will discuss this with you before surgery. Make sure you write all your questions down so you don't forget what to ask. It's all very mind blowing!
Look forward to hearing from you soon. Xx

Linda Lloyd  Hello Barbara,
How very nice to “meet” you—you were so much in my prayers throughout your ordeal, was so elated when you were “out”, and yes, there are so few of us EA-ers, that it’s great to find each other (actually, you are the first person that I’ve known, however “virtually” ☺). Pray tell, what about my numbers seem good, from your perspective?
Here’s what the lit. says about when it’s time for serious consideration for EA surgery, which is why they are sending me (plus EA Guidelines: “The trend is to perform surgery earlier rather later in the course of heart failure.”):
• Heart Failure stage 1/2 or A/B/C (as per e.g. NTProBNB and Echo structures)
• Leakiness of valve stage 1-2
• RVEF not too far from 40
• Deteriorating exercise capacity (SOB now)
• Progressive heart dilation (RA—severely dilated, RV—moderately dilated).
How does this compare with your situation? or Lori’s I’m wondering ? (not sure how to tag her). And/or, is this what you were told too?
For me the issue is also how fast will these numbers progress, which is why they are sending me to Mayo—for the expert’s opinion. I come from a major medical center in Philadelphia (age 68), so this is a long trip from home, plus I’m being sent because they admit that there are no surgeons here that have had enough experience with the complexities/risks of adult EA (with the complexities of adding another dangerous valve surgery as well). All my records are going this week, so I’ll set up an appt. as soon as they get them (P.S. Does anyone know how long it takes to get an appt. at Mayo? )
The complicating part of this is when they do the EA part of the surgery, they will also need to replace a deteriorating bovine valve. This is also what makes the surgery so dangerous. My original aortic valve was completely healthy, until it was punctured by seriously botched radiofrequency ablation surgery (for the WPW part of this) 13 years ago (my “holy cow” valve is actually is doing pretty OK now, but they don’t want to risk waiting to do a 3rd ohs, knowing this will eventually be necessary).
I could really relate to all that you were experiencing, because everything was going wrong for me from that point (and the 3 holes that were punctured in my heart had never happened in the history of cardiac surgery, so it was very dicey –and life threatening--in terms of what to do: literally, they had conferences about this from experts from all over the country!), and it took 14 weeks before they could literally save my life. In truth, I actually still have remnants of PTSD from that experience.
And this new surgery will be even more complicated, so it’s pretty scary (not loving being away from family, friends, and spiritual community part either—even as my husband and kids will be with me, initially, for sure). And I walk around not knowing “when”, so my life is pretty much “on hold” in terms of any kind of future planning. I’m hoping the docs. at Mayo can provide some answers.
Take good care, still sending healing energies for a quick recovery to you from here, in Philadelphia .

Barbara Laurie  Dear Linda, to be frank, I only saw a few numbers and my doctors never discussed them with me, it was all.. Symptoms plus their findings. All the numbers you mentioned are not familiar to me at all!😄 I'm not stupid, but I guess they didn't know I wanted that detail. So much happened to me that Dave never divulged here, and my disabilities now I don't mention simply as not to scare others here on the web. But EA is very rare and, tricky, tricky. From another FB page I read many people saying they received fairly prompt replies.. Dr. Derani (?sp?) is the expert there. And, if I had coverage I would've thought to go there too.
You can listen to some really good YouTube videos of this Dr. Talking EA.
As far as future plans, if you mean when and where will your OHS be, I get you. Anything after that, well, we've learned that plans for AFTER OHS are only big maybes🌹
You've had a very long heart journey, praying this leg of it turns out well. 🌷🌷🌷❤️

Linda Lloyd  Hi again. Yes, it is Dr. Dearani that I’ve been referred to, and I have seen his videos--so I’m grateful for being referred to him. I’m coming from a “very famous” heart hospital (U of Penn), so I’m also grateful that (granted, with my questioning and prodding) they had the humility to say that they couldn’t do it, and I needed someone who has had a lot of experience with this (particularly, when I have two complicated procedures to take into account). I don’t know Nicola—hoping she fared better?
Yes, this stuff is truly scary. And the only reason I’m on top of that kind of data and EA numbers is because I have access to all the medical journals, which most people don’t (I’m a college professor, now retired; taught occupational therapy). But even at such a good hospital (where they saved my life from the original botched surgery), I was also struck as to the need to be my own advocate, i.e., by quoting the literature for them, then asking the difficult questions, and pointing out that my numbers are very near what Dearani is recommending for surgery (which is actually what prompted the referral). DIY medicine is not how it should have to be, but sadly, it is.
Placed call for an appt., and they said they’ll get back to me, after Dearani looks at the records (guessing it will take awhile for him to get to them, and then awhile longer to read through all of them).
I kinda’ suspected that things are still a struggle for you (remembering that I taught rehab.) which is why you’re still very much in my thoughts and prayers. I know that we don’t want to scare people, so maybe if I give you my contact info. we can talk more freely? I’m also wondering if you had any words of wisdom for one who has to go through the same procedure you did given all that you’ve had to learn throughout this ordeal (and sadly, that’s ½ of what’s pending for me). Like you, my faith is strong, which is ultimately what pulls us through whatever we have to go through. Email is grace.up47@gmail.com.