Kate's Posts

Today is my heart valve-rsary #1, but for my third OHS. April was supposed to be my 10 year valversary for my two mechanical valves, but they didn’t make it that far, though by some luck, I did! It’s a long crazy, story but what happened is that I got two On-x mechanical valves in 2016 (aortic and mitral). I never felt amazing after that surgery and my cardio capacity was never the best. Although I was active, I wasn’t out running marathons -- still, I was able to go about my regular life for the most part. Despite having multiple cardiologists over the years, I was reassured by them that the elevated gradients noted on the yearly echocardiograms (particularly aortic) were normal for mechanical valves, and that there wasn’t anything wrong with my valves. So for nine years, I lived my life. And then 2024 brought about some major life disruptions and stress for our family. By the end of that year, we had to relocate from WA to CA for my husband’s new job. I was lucky enough to get a cardiologist at Stanford soon after we moved, and she was a young, bright doctor. We had a pretty casual conversation that January and since I mentioned my frustrations with cardio, she thought it might be a good idea for me to get a stress echo test to see what my heart was doing with exercise. That was scheduled several months later in April. I was feeling tired and wiped out in the meantime but that didn’t seem surprising given the huge move we just did. The day of the stress echo test is when I was clued in that something was very wrong with my valves. My test was abnormal and my gradient for the aortic valve was extremely high, especially after exercise. My cardiologist next sent me for a CT scan because she was concerned something was obstructing that aortic valve. And she was right. That scan showed that there was “pannus” (or excess tissue growth) on the aortic mechanical valve, causing it not to be able to open fully. Though she didn’t think it was an emergency at that time, she said the only thing to do would be to replace the valve. I was devastated to learn that another OHS was in my future. And I was not prepared for how soon in my future it would be! I think there was an extent to which my heart adapted to poor functioning and a level of denial in me too. I chose mechanical valves in 2016 because I never wanted to worry about another OHS and I didn’t want to put myself or family through it again. I didn’t know anything like this could even happen to mechanical valves. But my symptoms got progressively worse in just a matter of months. What went from a conversation with my cardiologist in which she said “you need to have another open heart surgery someday to replace this valve” quickly became “you need to see a surgeon now.” Since she was a Stanford doctor, she wanted me to see the top surgeon there. And I will just say that the surgical consult was one of the worst doctor’s appointments I’ve had in my life and my husband and I felt hopeless afterwards. I have multiple higher risk factors now, and he didn’t sugarcoat any of it, not that I wanted him to. Many people don’t care about this and that’s always your choice, but I did want to feel that my surgeon cared for me as a person and I did not feel that way at all from him. With all of the awful things he said, one of the worst was, “You could just give up on your heart. That would be foolish at your age, but it’s an option.” At 49 years old. And I did briefly consider that afterwards because I was that depressed and terrified. After a few days of processing, I knew I owed it to myself and my heart to consult with some other surgeons. One I came across was Dr. Castro from this group and I’d seen many of his glowing reviews. Though it wasn’t as convenient as Stanford, he was still in CA, so my husband and I drove up north to meet him. He was like I imagined from other patients; kind, humble, and also very experienced. We discussed all of my risk factors and he did not downplay that the risks were there, but he had solutions for them and thoughts about how to mitigate them. Another thing that stood out is that he was skilled in doing “mini sternotomies.” Because I had developed pectus excavatum, a condition in which my sternum grew inward after my last surgeries, my heart was extremely close to my chest wall. Dr. Castro’s plan was to start with the mini sternotomy, deflate my heart and lungs, then see if he could access the valves that way first. This was much more palatable than the disturbing option I was presented by the Stanford surgeon in which he said they’d do a full sternotomy, and then might have to leave my chest open for two days while the heart swelling comes down. I would be in a medical coma in that state. But Dr. Castro said he didn’t see a scenario in which that would happen. My surgery was scheduled for July 21st last year. Dr. Castro’s theory was that my On-x valves were much too small and that allowed for the pannus to grow. So I got two new mechanical valves, this time bigger, St. Jude type valves. Though the aortic was the one that had the highest gradient, it turned out my mitral valve wasn’t in great shape either, and the valves were actually butting up against each other. I was in the hospital for 13 days and it wasn’t an easy recovery. I ended up needing to get a dual chamber pacemaker 10 days after surgery too. I had many side effects and complications but I’m very lucky to have recovered from most of them. I have chronic costochondritis (inflammation of the cartilage connecting ribs to breast bone) and it's more widespread than it was before but it’s to be expected in my case given all of the irritation to the chest wall and scar tissue. I have an amazing PT and an osteopath who help me manage my pain and are helping me get stronger. I have palpitations and some short spells of tachycardia, but I’m doing everything I can to manage that. Considering where I was last year at this time, it astounds me how far I’ve come. None of us have any guarantees with this life or with these valves, but my situation is pretty rare. I know that I’m lucky to be here and for any bonus time I get. For my 50th birthday in September, I had always planned to take a big trip to Europe but I had to postpone that until the late spring because I was still very much recovering on my birthday. So my husband and I made the trek to Rome and Greece (Crete and Athens) at the end of May. It was a lifelong dream come true to get there and it was surreal to find myself standing outside of the Acropolis. I was overcome with gratitude. If you happened to read this far, I’m sharing this story in case there are some of you who are faced with scary odds or a repeat surgery. Or who didn’t have a “perfect” recovery. A human’s will to live is amazing and the human body is incredibly resilient. We may all have our limitations but we can still find fulfillment within our limitations. Your confidence in your surgeon matters too so don’t be afraid to seek multiple opinions! I am beyond grateful for Dr. Castro and his team, my husband, my family, my dog, and some good friends who helped us get through one of the hardest years of our lives. And of course Adam for creating this group which has helped support me through my last two surgeries. Keep on ticking, everyone.

For those who knew Rita Savelis: I recently logged back on here to check on some people, only to be crushed by the news about the death of our friend Rita Savelis. Though I never met her in person, Rita was very special to me, and I know she was to many of you, as well. We "met" on here in 2016 as I was preparing for my 2nd OHS for a double valve replacement. She was one of the first patients I met who also had multiple mechanical valves and was on warfarin so we immediately had that connection. I was also drawn to her because she was always authentic, supportive, and kind in her comments. I felt understood by her because I didn't have a "perfect" recovery, nor did she. I am a sensitive person who feels so much and so did she. She helped me to feel ok expressing my feelings, even if they weren't always positive. We lost touch for a few years back when I stopped logging in here much, but she was always in my heart, like all of my other "class of 2015/2016" friends. I thought I'd meet Rita in Paris someday, whenever I would make it there! I signed back in to this site last summer when I found out I needed yet another OHS. I was devastated by this news but I was so happy when Rita commented on my first post. I felt grateful and relieved to know that she was still doing ok and that we could reconnect. To share an excerpt from her comment. The first part made me chuckle a little and the rest of it felt like it sums up what I loved about Rita. We had talked back in 2016 about making a soundproof shirt or bra :) "I also remember how you and I wrote about designing a t-shirt with padding to muffle the sound of mech valves. I hope that writing was helpful. You are such a beautiful writer. We are not always looking for answers, just saying where we are and describing honestly the present place. There do not have to be any "you've got this" or "waiting for surgery is the worst part" just an acknowledgement about how hard and unfair life is. And how we move forward, because what else can one do?.. .... Much love." When I had my latest surgery on July 21st, she said she going into the hospital that day too for issues with her pacemaker leads. She still commented on my posts periodically and checked in on me. But the last time I heard from her, things didn't sound very good and she said she was going off this site for a while. I respected her need for privacy, though it was hard not having any way of sending her support or knowing how she was doing. I know that she impacted many of us here with her wisdom, warmth, and genuine care. She had a beautiful way with words. None of us are guaranteed any amount of time here on earth, this we know. Rita's passing was another difficult reminder to me to always be grateful for this beating heart and every breath. But it's also ok to feel angry or sad at my situation sometimes, as long as I don't dwell in that dark place. You really never know how your words, written or spoken, will affect people and I can only hope that Rita passed knowing that she was important to me and to so many of you who were lucky enough to interact with her too. Thank you to for Adam for creating this site, because I can't imagine making it through these surgeries without the support and friendships I found here. This is a such a kind group of people, so thank you all for being here. And cheers to our friend Rita. May she be at peace.

I am now about 12 weeks post op. Things are kind of slow going here in my recovery process, with multiple setbacks and a few ER visits. A few days ago, I pulled something in my rib which is very painful and I think was just from getting out of my bed. I had slept in my recliner for months, including before my surgery, so when I started sleeping in bed, it brought on new pains. I guess I wasn't quite ready for it yet, so I'm back to the recliner temporarily :-( I had a cough for 4 weeks due to pleural effusions which is much better but now it comes and goes. It seems like I need to stay on diuretics for a while longer so we're playing around with dosing. I also still have some "atelectasis" or lung collapse in my right lower lobe which has been present since surgery. Have any of you had issues with your lungs recovering so slowly? And then my electrophysiologist is ordering a home cardiac monitor to look for any arrhythmias that could be contributing to my dizzy spells and periodic shortness of breath. It seems I may have been wrongly diagnosed with Afib a few months ago in the ER, so we shall see. I get very frustrated with the setbacks but I have to keep reminding myself that I am very early on in the grand scheme and this is my 3rd open heart so I somewhat expected more pain and slower healing. I know I'm just very lucky to be here, and it makes me teary sometimes. I can't walk my dog yet because he's a puller, but here is a picture of him for you dog lovers. This is Kai! He's not an official therapy dog but he sure helps me get through the harder days.