c's Journal

I’m 6 months from surgery this week. Notes from this month include:

+ In general, back to pre-surgery normal, and then some. The lows are not that low. Things are getting incrementally better, even now.

+ Trip to London, (posted about earlier) where I got to test my energy & stamina over the course of a week and did great. Lots of walking, but not much cardio.

- Towards the end of my vacation, I did notice some shortness of breath, and this thing I call “heartcups.” It’s sort of like a hiccup — I try to take a breath but don’t get any air. I had these right after surgery, and they went away after a month or two. It only happened a few times on my trip, and hasn’t happened since I returned.

- All my life, I have felt short of breath while exercising. I would take a deep breath, but it never felt like I was getting a ton of air. I felt that way when I re-started cardio after vacation. But now I know how it is supposed to feel, and I know when something is not right. After a few days of cardio, it got better — now when I take a deep breath and get a lungful of air, I can really feel it. It’s amazing. That shortness of breath was a clear reminder of how different things are now than they were before surgery. I hope that in time, a few days off will not cause problems.

+ I am getting better at understanding my heart… I feel I need to keep up the regular cardio exercise to keep my heart strong, keep it in that intense-but-not-too-intense zone (11-13 on that weird scale they use at cardiac rehab), and rest when I need to. I haven’t had palpitations / extended irregular heartbeats since early February, when perhaps I was going at it a little too hard.

+ I have noticed changes in my feet and abdomen, which had become swollen a few years before diagnosis. I thought this was just weight gain and menopause. A year before surgery, I took a photo of my feet wearing some new shoes — my feet are puffy, you can’t see my ankles. I re-took the photo the other day, and I can see ankle definition, ankle bones poking out, tendons, veins. I have a waist again — lost three notches on my belt. My rings fit again. According to my $20 body composition scale, my weight and body composition haven't changed much since early December, so it makes me wonder if some of the swelling may have been edema from heart issues.

+ My intra-op TEE showed my valve had no regurgitation, but at my post-surgery echo, my repaired valve had mild regurgitation. I could feel it — it felt gurgly, tho not as intensely as before surgery — and my husband could hear it when he put his ear to my heart. It’s gotten better — haven’t felt anything and my husband hasn’t heard anything in a while. I am hoping it will be better at my next echo.

- I had to stop my running experiment because of my knee… Doing knee strengthening exercises, and will try again in the summer. I feel like this would be a real test of my heart performance. I used to love running and am very motivated to get my knees healthy to try again.

+ Daily living is so much easier now… I have energy at the end of the day to walk the dog, do chores, cook. Taking the heart healthy diet seriously. I feel lucky to have had clear arteries for this surgery, and hope to keep them that way.

+ I still get fatigue, but not the same or as bad as before. I don’t have pain / tiredness in my legs, and I wake feeling rested.

- Hills are still difficult — I have gone for walks with friends where I have to talk while climbing hills. I’m short of breath, while they’re doing fine.

Grateful to everyone ahead of me who shared their positive experiences, and provided inspiration, motivation, and hope. Best wishes to everyone whose surgeries are upcoming and to everyone in recovery.

56F / BAV regurgitation & aortic aneurysm / aortic valve repair & aortic replacement 9/18/2023.

I’m about 5 1/2 months out… just came back from a week in London. It was so exciting I barely thought about my heart the whole time. I managed my own bags (a suitcase, a backpack, and my handbag); got over 20k steps a few days; stayed out late, danced, and got up early. I was a little anxious at first, but eventually forgot about all my health worries. I wore supportive but heavy boots that I had given up on a few years ago — they made my legs too tired — now I can hike around the city all day in them.

I couldn’t have imagined being able to do this prior to surgery. I had taken all the exercise recommendations from rehab to heart — and feel stronger and fitter than I have in many years. It is a thrill to be able to do the exercises, which I wouldn’t have been able to do before without extreme post exercise fatigue, and then see that pay off in having a more active life. Plus it was a wonderful way to celebrate still being alive. Hope others feel similar improvements or better as they recover. Best wishes to all . 💗

I am a bit over 5 months out of surgery for aortic valve repair and aortic hemiarch replacement.

Milestones for this month include completing cardiac rehab, and starting walk / run intervals on a track. It's amazing to be able to run and not be short of breath. It is very exciting, and I am looking forward to see what else I will be able to do. There are a couple of local hikes I had to stop doing, and I want to give them a go again.

I was feeling a lot of PACs throughout January, and did wear the monitor again, but everything seems to have settled down. I like to put on headphones, which block out other noises, and listen to my strong, steady heartbeat. I have been trying to manage my low BP by being careful to stay hydrated, and haven't had any problems.

Everything's feeling great right now. Just wanted to share some positive news.

At cardiac rehab yesterday, I was on the treadmill and had a run of PACs (singles, twos and threes) spaced closely together — it felt like my chest was rumbling. I stopped the treadmill, and after minute or so (not sure) my heart returned to a normalish rhythm. The nurse tried convincing me that PACs are not a problem unless it goes on for two or three minutes even without doing anything, but it’s hard to reconcile that with how my body feels.

He did give me some tactics to try to control them — Valsava maneuver (tho he didnt use that word); coughing. Happy to try it. Wondering if anyone been successful using these techniques to control their heart rhythm?

I remember after surgery I discovered I was able to control this cough I had (which felt heart related, not sure how to describe it) by taking a deep breath, holding it for a couple of seconds, and exhaling. What I feel now is different but I will try it as well.

Getting the monitor again on Monday.

My cardiologist and PCP want me to do the monitor again. I was going to say no — it is such a bother if they are just going to say PACs are not a problem. But today my heart was feeling rumbly and… it kind of feels like a problem? I took a Kardia reading — mosltly singles but there were some doubles and one triplet. Has anyone had these and have them just … go away? I’m about 4.5 months out.

I am four months out from surgery this week. Physically, I am doing very well. I have been more active than I have been in a long time before surgery, and with less fatigue. I am only recently sleeping through the night. I just started doing body weight exercises like planks, pushups and my back exercises, which I had been sorely (literally!) missing. I am now working at the upper end of my target heart rate range while doing cardio exercises. I still haven't pushed the boundaries of what I can do — in the spring, I hope to start running and cycling outdoors again. I do have PACs which are noticeable and sometimes go on for a while. I wore a monitor and my cardiologist said they were nothing to worry about.

I am wondering if there are people with low blood pressure here. Early in recovery, the top number would dip into the 70s, even after they took me off beta blockers. Now it's mostly better, but there are times I feel low and take a reading, and see it's in the low 80s.

At first, I thought it was due to my heart condition, but as it continues to be an issue so long after surgery, I am not sure why it is happening.

Currently, I am nursing a sprained ankle after falling after a dizzy spell. I am doing lifestyle things to manage this because I do not want to injure myself falling again. I am staying hydrated, getting up slowly, being mindful of how I am feeling etc. My PCP ran some tests; I haven't talked to her about them yet, but they all looked normal.

I am wondering if anyone else experienced this, and if a cause were found or if it got better at some point. Just trying to pin down whether this could be heart related or not. Thanks for anything you care to share

I wanted to share a link I hope someone might find useful… the image link below does not work but clicking the text link here should: https://www.instagram.com/fraserfranks

 Fraser Franks, an English footballer who retired because of his heart condition, documented his recovery from OHS for the British Heart Foundation. His surgery was two weeks ahead of mine, so I think of him as my heart surgery buddy ❤️‍🩹 I appreciated him sharing his experience so much — he really showed the ups and downs of those first few days, and also the mental challenges which are hard to talk about.

Everybody is different… so I hope it won’t scare or discourage people who haven’t been through it yet. For example, he experienced way more pain than me, tho his recovery went way faster than mine — I’m sure being a young professional athlete and not a middle aged lady had something to do with it!!

(He was diagnosed with bicuspid valve which was discovered to be unicuspid only during surgery! He went with mechanical. Also had aortic aneurysm replacement.)

Hope these links work… he is Fraser Franks on instagram, and there is a Highlight called “open heart surgery” to see his pix / videos from his experience. I think you need an Instagram account to see the Highlight.
Have a great day 💗

https://www.instagram.com/fraserfranks

I'm 16 weeks out of OHS for BAV repair for regurgitation & aorta replacement. Like many others, I had high heart rate after surgery.

I am happy to say that my Fitbit is now telling me that my resting heart rate is in the high 50s, which is what it was before surgery. My heart rate during the day has been pretty normal, too — for months after surgery, it would often be in the 80s-90s while I was sitting around doing nothing.

I was having such trouble sleeping when my heart was racing all night. I am now sleeping through the night for the first time since surgery, and it is such a relief!

It's only been this low for a week, so I am
hoping it stays this way. It has been going up and down, though trending downwards overall.

I have been lurking since I discovered this site sometime after surgery… I appreciate everyone sharing their experiences, which have been so helpful during my recovery. Just sharing since it seems to be a common concern, and frankly no one in real life really gets what a big deal this is!