Patient Expectations After Heart Surgery: Leila’s Story
Written By: Adam Pick, Patient Advocate, Author & Website Founder
Medical Expert: Joanna Chikwe, MD, Chair of Cardiac Surgery at Cedars-Sinai Medical Center
Published: October 12, 2022
Understanding specific expectations for the recovery from heart surgery can be a “black box” for patients, their family members and friends. There are so many questions. There are many concerns. In addition, confusion can be amplified as patients heal at different rates.
In the past, we have surveyed patients about their recovery experiences. However, I wanted to interview a recent patient to learn more about current patient expectations after heart surgery. For this reason, I interviewed Leila Saeid, a mitral valve repair patient, mom, wife and dentist from Southern California. Leila’s surgeon, Dr. Joanna Chikwe, Chair of Cardiac Surgery at Cedars-Sinai Medical Center, joined us for this special conversation.
Key Learnings from Leila’s Recovery Expecations After Heart Surgery
Here are insights from this conversation with Leila and Dr. Chikwe:
- Leila Saeid is a mother, wife and dentist in Southern California. Leila was diagnosed with a heart murmur due to mitral regurgitation in 2000. Leila was asymptomatic and monitored the leaking valve with regular echocardiograms for the next 20 years. Leading up to her surgery, Leila was very anxious. “I was a terrible patient,” Leila shared.
- According to Dr. Chikwe, approximately 50% of patients are asymptomatic. Unfortunately, asymptomatic patients may not get treatment at a time that could be beneficial to their health (prior to the onset of cardiac damage). “Cardiologists were traditional taught that you wait until symptoms until you send somebody to fix the valve,” states Dr. Chikwe. “We now know that’s not the best way to handle this for the vast majority of people with severe mitral valve regurgitation and a floppy mitral valve.”
- After Leila’s heart valve disease progressed from moderate to severe mitral regurgitation, Dr. Chikwe performed a robotic mitral valve repair surgery to provide Leila a durable outcome that often returns patients to a normal life expectancy.
- For Leila, Dr. Chikwe leveraged a minimally-invasive robotic approach that did not break her sternum or ribs. The incision was the size of a credit card.
- Length of Hospital Stay: Leila entered the hospital on December 18 and was discharged on December 22, a five day stay at Cedars-Sinai.
- Pain Medications: Leila did not take any pain medication or over-the-counter medication (e.g. Tylenol) after she left the hospital on Day 5. “I went medicine free after Day 5,” states Leila.
- Walking: Leila began taking 10 minute walks with her husband seven days after surgery.
- Driving: Leila began driving 5 days after surgery because her daughter had an accident and needed medical attention. “Driving was not a big deal,” states Leila. “Getting in the car and getting out was a little uncomfortable granted that that was Day 5 after my surgery.”
- Going Back to Work: Leila went back to working full-time at her dental practice 14 days after surgery. “I went back to work two weeks later,” states Leila. “I was a little uncomfortable on Day 1 just because I do a lot of slouching, bending over, but other than that, I went back to work full schedule on Day 14 after the surgery.”
- If possible, Dr. Chikwe advises patients to go back to work part-time. “I advise people, if you can, don’t go back for a full day. Go back for shorter days, because by the middle of the day, your tolerance for putting up with people, long conversations is just not going to be there.”
- Sex After Heart Surgery: Dr. Chikwe suggests that patients can have sex as soon as they choose to. “I usually say as soon as you’d like as long as you’re not doing any heavy weightlifting,” states Dr. Chikwe.
- Cardiac Rehabilitation: While Leila did not attend cardiac rehabilitation classes, Dr. Chikwe believes such classes can be incredibly valuable for patients.
- Advice for Patients: Leila’s advice for patients is to research the surgery and your medical teams Also, Leila believes it is better to have the surgery sooner-than-later.
Many Thanks to Leila, Dr. Chikwe, Mama Rosa and Cedars-Sinai!
Many thanks to Leila and Dr. Chikwe for sharing their experiences and clinical research specific to the recovery from heart surgery. A special thanks goes out to the Cedars-Sinai team that takes such great care of heart valve patients!!! Yes, Mama Rosa that means you and the entire nursing team that helped Leila recover so quickly after her mitral valve repair!
Keep on tickin’ Leila!
P.S. For the deaf and hard of hearing members of our community, I have provided a written transcript of Leila’s video below.
Adam: Hi, everybody. It’s Adam with heartvalvesurgery.com. This is a special conversation about patient expectations after heart surgery. I am thrilled to be joined by Dr. Joanna Chikwe who is the chair of cardiac surgery at Cedars-Sinai Medical Center in Los Angeles, California. During her extraordinary career, Dr. Chikwe has performed thousands of cardiac procedures, including many heart valve repairs and heart valve replacements. We are also very lucky to be joined by Leila Saedi who is one of Dr. Chikwe’s patients and a wife, mother, and dentist from southern California. Dr. Chikwe, it is great to see you again. Thanks for being with us.
Dr. Chikwe: Hey, Adam. It’s great to see you again and it’s really good to be with the heartvalvesurgery.com community today.
Adam: Yeah, and Dr. Chikwe, we are thrilled to be with one of your patients who is Leila Saedi. Leila, thanks for being here today.
Leila: Good morning to both of you. Nice to be here.
Adam: Yeah, so let’s get started. To begin, Leila, let’s hear a little bit about your mitral valve story. I’m curious to know. What were you diagnosed with? When were you diagnosed? Did you have any symptoms?
Leila: Back in 2000, in a regular routine checkup, I was told that I had heart murmur. My cardiologist did a couple of more tests and they told me that I had mitral valve regurgitation. For the next 20 years, I lived with it and I had no symptoms.
Adam: Dr. Chikwe, you see thousands of patients there at Cedars-Sinai in Los Angeles. I’m curious to know. Is Leila’s situation, which included a long watchful waiting period and no symptoms, is that common?
Dr. Chikwe: It’s really common. I would say about half the people I see in the office don’t have symptoms. That covers a huge range, from people that have just dialed down what they do so they’re not really doing a lot and they feel fine to people like Leila who can literally run five miles without a problem. One of the reasons for this is that cardiologists were traditional taught that you wait until symptoms until you send somebody to fix the valve. We now know that’s not the best way to handle this for the vast majority of people with severe mitral valve regurgitation and a floppy mitral valve.
Adam: Leila, how did you think about the progression of your disease relative to your practice as a dentist?
Leila: I compare that to a little filling on the tooth that you can do a simple filling or you can just wait until you do a root canal and a crown, potentially extraction. If I were to explain it to the patients, I would say do a filling. It’s just much more predictable than waiting until it hurts because a lot of patients tell me that, “It doesn’t hurt. Why should I do it now?” I tell them, “I wish I could just show you what’s going on actually within the tooth.” That is my explanation to people who want to wait.
Adam: Dr. Chikwe, you’ve got Leila. Her valve disease has progressed. She now surgery. What is your recommended approach for treating a patient like Leila?
Dr. Chikwe: The operation I did on Leila is the operation I would want for myself, which is a beautiful repair that works nearly perfectly and is going to last a lifetime. My preference would be a very small incision, ideally between the ribs so that we don’t have to cut any bones. My standard approach is using the robots to achieve that because a robot allows you to do a super precise repair through a tiny little incision which is probably not much bigger than the short end of a credit card over here on the right-hand side. That allows you to hopefully get out of the hospital much faster, get up a lot sooner than if you’d had the incision down the middle. Leila, maybe you can speak to what that was like and how the recovery was.
Leila: Again, I go back to dentistry. I tell my patients that the recovery was easier than recovering from wisdom teeth for me. That’s actually the truth. The first couple of nights was rough. It was rough. It was expected. Initially, the first day I did have some pain, but I have the exact dates actually. My surgery was on the 18th. I was dismissed on the 22nd. Back home, almost exactly a week later, I did a ten-minute walk with my husband up the hill. December 6th, I was back to work full schedule. I was a little tired that day but that’s about it. Pain level, I don’t think I took pain medications after Day 5. I was really comfortable. It was just the discomfort was sitting down, standing up due to stitches but really no pain. Up to this point, nobody knew that I was getting a heart surgery prior to. I don’t like to get opinions from people. I don’t like the extra chiming in, oh, are you doing it, details. It was just my husband and my sisters. Not even my parents knew that I was having a heart surgery done. Afterwards, they were all thinking that it was some small procedure I had done. They thought that I recovered pretty fast from that small procedure.
Adam: Congratulations to you both. Dr. Chikwe, I want to dial it back. We just heard all this great information from Leila. For patients out there who are looking to get more general expectations, what do you tell patients about things like, maybe we just start with pain management. What should a patient expect specific to pain?
Dr. Chikwe: I have to say heartvalvesurgery.com is a great resource because what a surgeon thinks a patient needs to know about pain is often not really what patients in retrospect wish they’d known about pain. I’m curious to hear from Leila’s perspective if the advice that I give, which is I expect by the time you leave the hospital, most people, I imagine, are just fine with Tylenol. It might hurt when you laugh or you sneeze or you cough, but you should be able to walk around comfortably. Is that true or should we be giving patients different advice?
Leila: I think it was absolutely true. I think I even recovered a little bit sooner than you had expected. You gave me four to six weeks. I think mine was more like two weeks with very little pain. In fact, I didn’t even need the Tylenol on Day 5. I went medicine free after Day 5.
Adam: Dr. Chikwe, another question that patients often wonder is about, hey, when can I drive again after surgery?
Dr. Chikwe: Cardiologists seem to have a more conservative view. I usually tell patients, as long as you’re not taking narcotics and you feel comfortable behind the steering wheel and you can pull a handbrake and you can turn around, you’re good to go, two weeks.
Adam: Leila, let’s go right back to you. When were you driving after your surgery?
Leila: I was just not going to share this but I’m going to share this with you. I was dismissed on Monday and my older child sprained her ankle on Wednesday. She really needed mommy’s attention so I got behind the wheel and I drove her to her orthopedic surgeon. That was Day 5 or 6. It was just getting in the car was a little uncomfortable but I used my little hard pillow to protect my chest and it was comfortable. Driving was not a big deal. Getting in the car and getting out was a little uncomfortable granted that that was Day 5 after my surgery.
Adam: This is amazing to hear because I was not behind the wheel as a patient for four weeks after my procedure. That’s fantastic. Moving on to another question, Dr. Chikwe, that I get all the time. It’s a personal question but it’s about sex. When can I have sex after heart surgery?
Dr. Chikwe: I usually say as soon as you’d like as long as you’re not doing any heavy weightlifting.
Adam: When you say as soon as you’d like, is there any timeframe you say do not do it before?
Dr. Chikwe: No.
Adam: Okay, one more question that patients have about their expectations after surgery is, when can I go back to work?
Dr. Chikwe: That really depends on whether your work involves very physical work, heavy weightlifting, driving or not. Some people are sitting up in beds on their laptop sending their emails Day 1. Again, if you’re not taking narcotics, it’s a desk job, as soon as you feel ready. If it involves heavy lifting, about two weeks if you’ve had a mini-incision, it’s a little bit longer if you had an incision in the middle, maybe about four to eight weeks.
Adam: Leila, what are your thoughts on going back to work after your procedure?
Leila: I went back to work two weeks later. I was a little uncomfortable on Day 1 just because I do a lot of slouching, bending over, but other than that, I went back to work full schedule on Day 14 after the surgery.
Dr. Chikwe: One thing I do tell patients, and again, Leila, I’m curious if this was your experience, but your mental stamina is sometimes just a little bit less. I advise people, if you can, don’t go back for a full day. Go back for shorter days, because by the middle of the day, your tolerance for putting up with people, long conversations is just not going to be there.
Leila: That’s true. That is very true. I think my ego a little bit got in my way. I’m sharing this with you. I just really did not want people to know what happened. I was trying to just tough it out. That trying to tough it out was really helpful. It just powered me through the whole thing much faster.
Adam: Dr. Chikwe and Leila, I love hearing about how not just the physical side but also the mental side. I’ve got to ask this question while I’ve got you on the line, Dr. Chikwe. Cardiac rehab is something that I hear is often underutilized for patients who may not have such a great recovery as Leila. Can you talk a little bit about what cardiac rehab is and how it might help patients as they recover?
Dr. Chikwe: Patients like Leila, you can go and see what rehab is like, but you’ll be so far beyond what they’re able to do that it’s probably not going to be worth your while. I think for much older frailer patients who really want to do graduated exercise in a much more supervised environment, one, and two, find a community of people that may be going through similar challenges, cardiac rehab is incredibly valuable. We’ve got to do a better job of ensuring everybody has access to it.
Adam: Leila, I’ve got to ask you, and I’m sure a lot of patients are wondering. What is your Number 1 piece of advice for a patient, specific to expectations after heart surgery?
Leila: Having read so much prior to the surgery, I was expecting a much longer recovery. The recovery was much easier for me. I went back to work much faster and sooner than I had expected. I’m just glad I did it when I did it. I think I had the option of prolonging that and waiting, but at some point, I decided that if we’re going to do the surgery, it’s better doing it sooner than later. Again, the recovery was much more predictable. I was always an active person. It only took me two weeks to be back to my normal life. I do believe that we should all refer to ourselves to see how we feel afterwards. The four to six weeks is the norm they give people. You might feel much more comfortable a week later or four weeks later. I happen to be one of the ones who felt much more comfortable two weeks later.
Adam: Leila, I loved hearing about your recovery and how quick it was. I also love the fact that you talk about the uniqueness of patients that some patients might recover faster than others. You can’t rush it. Dr. Chikwe, I’ll pass the torch over to you. Any final thoughts about patient expectations after a robotic mitral valve repair?
Dr. Chikwe: The anticipation, like Leila said, is almost always worse than the reality. You’ll be amazed what you can do and with an amazing nursing team, it’s a ton easier than you think.
Adam: Fantastic point, Dr. Chikwe. Let’s dig deeper on that. Leila, how important was the immediate aftercare provided by the nursing team at Cedars?
Leila: The kind of care that I got in that two or three, four days afterwards was just as amazing as the whole experience of getting the surgery. These people so truly cared. I tried to make a mental note and go back to my office and then share with my staff that this is how I felt. I felt so special and I felt so important. Every time that I requested something, it wasn’t just I’m doing it because this is my job. I’m doing it. I have to bring it to you. It was really with full heart and a lot of sympathy for the patients. There was a lady, Mama Rosa, I can’t say enough about her. I’ll share that with you. One night, I just broke down and started crying because it was just overwhelming for me, Day 2, and she just sat down next to me and she rubbed my back, she hugged me and she kissed me and she held me until I was comfortable. These are the things that people need to know that it’s not just this surgery per se. It’s what happens after that in that facility that makes the whole experience so much better.
Dr. Chikwe: I’m so glad you said that. The nursing care is so important. We are really blessed. We have these spectacular nurses who could make a difficult experience, however perfect the surgery is, surgery is a difficult experience to go through. They transform that into an amazing experience. Literally, patients will see a doctor for maybe five minutes a day, a surgeon for a few minutes. The nurses are there 24/7. That’s who gets you through this.
Adam: Leila, I’ve just got to ask. This is a wonderful situation. We’ve got you on the line. We’ve got Dr. Chikwe on the line. Is there anything that you want to share with Dr. Chikwe?
Leila: I’ll be happy to. I sent Dr. Chikwe a small bouquet of flowers. In my letter I said, if I really wanted to thank her with flowers, I would have to send her the entire flower shop. What she did was beyond just what a surgeon, what an amazing surgeon would do is just her attitude, her demeanor is so calming, so soothing. I remember just vividly that the day of the surgery when I was absolutely terrified on the bed, tears were running down my face, she came to say hello to me. She looked at me and say, look, if you still change your mind, if you don’t want to do it, don’t do it.
That was the moment that I felt so relieved that I’m not under stress, I’m not under pressure. I just closed my eyes and I said I’m going to trust her. Every time I saw her, she’s just so patient. You can tell that she cares. She’s not in and out. She’ll just answer and she’s up next to the patient. She sits down. She looks at you like she cares, like you’re the only person who matters at that second, answers all the questions and beyond. Then at the end, she says, look, I’m here to answer more questions. I, as a dentist, have learned that. I’m trying to do the same thing in my practice, just give patients that calming and soothing feeling I’m here for you. I’ve been practicing to be more like Dr. Chikwe in my practice.
Adam: Dr. Chikwe and Leila, on behalf of the entire patient community at heartvalvesurgery.com, thanks so much for taking time away from your very busy practices and sharing all these insights about patient expectation after heart surgery. Thanks for being with us today.
Dr. Chikwe: Absolute pleasure. Thank you very much, Adam.
Leila: Thanks, Adam. It was nice to be with you.