Lifestyle ~ Longevity
Weighing the future and a valve-type.
It’s less than a week from my aortic valve replacement surgery and I thought I’d write one last time before we all tuck into the holidays with friends, family and food, so much food. I guess what I’m feeling most right now is ready, emotionally prepared to accept what’s about to happen. Not fully prepared yet in the to-do list department though. My list is an odd blend of morbid and cheery — with things like get a pre-op COVID test, have my will notarized, finalize daily walks for our dog, pack a hospital bag, make a hazelnut torte for an outdoor neighbor Christmas eve breakfast and make blinis to go with caviar and bubbles over the holiday. As for the champagne and caviar, I don’t think there’s a better time to treat myself.
Last Friday we had the pre-op visit with the surgeon and the anesthesiologist. With the help of an aortic valve replacement group on Facebook and my sister (cardiac nurse), we came up with a list of questions and asked the doc if we could record the appointment to send to my sister. The recording was also good to have on hand for my husband, Simon and I to listen to. I’m able to google terms and get more detail at home. It is something I recommend for most complicated procedures. The audio file was large so Simon, a musician, knew WeTransfer was the easiest, free way to share the audio file. Here were our questions
Pre-Op Questions
- How many of these identical procedures do you perform in a year?
- What is your success rate?
- What type of surgical procedure will be performed if it looks optimal for aortic valve repair?
- What type of bio-prosthetic valve will be implanted if needed?
- What are you looking for when you visualize the valve? How long will this last?
- What about the ross procedure?
- Can you do a mini-sternotomy vs the full zipper surgery?
- What is your post op anti-platelet regime?
- What are the odds that I will need a second open heart surgery?
- Did you receive the Zio results? What did they show?
- With the developments of omnicrom — what are the chances the surgery would need to be rescheduled? Could it affect cardiac rehab?
- Have them sign the MOST form (A MOST is a doctor’s order that helps you keep control over medical care at the end of life.)
When I had the coronary angiography (the one that bruised my wrist) I thought I heard the doc say my aortic valve looked healthy but was leaking. I must have been mistaken as Dr. Reece (surgeon) said these are in opposition. But we started our meeting with that question and it was fortuitous as he showed us the visual of my echocardiogram. Even though I’m getting aortic valve replacement (ARV) the speed of my diagnosis meant I didn’t have a cardiologist, so no one has reviewed my results with me until this appointment. The system didn’t fail me — my condition moved beyond that. It was invaluable to view it with him and get clarification. Back in early November when I was getting my echo, I craned my neck to see the screen and I kept seeing what looked like severe thunderstorms rolling through. The brilliant red and orange movement like a murmuration was my heart leaking backwards. They use actual Doppler radar so I was right. I don’t think I’ll ever see an image of severe weather again and not think of my leaky heart.
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The other big take-away from the meeting is the sequence of potential future valve replacements. I’m 52 and the bio valve should last 10–15 years (half need to be replaced in that time). Worse case by 62 I have transcatheter aortic valve replacement (TAVR, an innovation that is only ten years old!) which is minimally invasive and then at 72 maybe another TAVR and then 82 open heart surgery again as you can only do TAVR two times. I approach most complex life decisions by asking “what is the worst that can happen” so this is info I need to process things. Dr. Reece said the older you are the longer the valve lasts, so there’s that. We talked a lot more about the mechanical valve as I am on the cusp age-wise. Before we had TAVR he would have recommended a mechanical valve and if I was 35 he would recommend a mechanical valve. What is being weighed is lifestyle versus longevity (of the valve) as mechanical valves last a lifetime. My choice is still the bio valve as I’m also betting on science to come up with something beneficial. Go science!
For more info on why I chose the bio valve check the “Highs and Lows” post.
After this appointment I was very low and tearful. Intellectually I had all this info previously but the reality was a gut punch. It’s this conundrum I’ve had to move through quickly — spending my whole life pursuing outdoorsy and athletic endeavors, eating healthy, using natural products in my house and on my skin didn’t insulate me from a health crisis. I’ve built my lifestyle up as my identity and I’ve had to reconcile that cardiologists and valve procedures will be a part of my life now. I know that chances remain very high I will resume normal activity again. But I’ll also have this other side of my life that I didn’t plan for, it’s a reconciliation of information.
That night after the appointment we had friends over, likely the last we’ll see in our house for quite awhile as we quarantine post-surgery since the Omnicron variant is still surging. We ordered take-out, laughed, heard stories of their recent travels and a new condo they bought in the mountains. My heart was so full of love for them and all the incredible people who have taken the time to show up in our lives in meaningful ways. If you’re still reading this, then you are one of those beautiful people. Thank you and Merry Christmas!
Lessons learned so far
- Our friends have been so wonderful throughout this and I realize I could have been better for people in my life who were going through hard times.
- People keep asking “how can I help?’ It’s an empathetic and kind question, but it puts the onus on the person in crisis who is likely overwhelmed. Next time your friends are in a rough spot — send a card, a text (but not too many), buy them warm socks, send a food voucher, make a plan for when they’re feeling better, send Netflix/podcast/music recommendations, a funny GIF. The options are endless — just show up.
This is part five of my story going from diagnosis to aortic valve replacement in 53 days. The surgery is December 28, 2021, 7:30 a.m. — 12/1 MT.
We have a good anthem insurance policy and here are my expenses through 12/17/21
