Anne's Journal

Hi. Has anyone else had aortic stenosis on their echo a year after their aortic valve replacement? Right after my TAVR, my echo was normal and I had only a very slight murmur. A year later, I have a loud murmur and the echo showed mild-to-moderate stenosis. My cardiologist isn't worried about it. She said "a typical valve might last 10- 15 years, but some last longer and some don't last as long," which makes me assume I'll be in the "not as long" category.

Shortly after my TAVR in 2017, I had a normal echo. About 2 months later, my PCP mentioned that I had a slight murmur, which he said was to be expected after a valve replacement. Recently, I had a routine one- year echo in 2018 and it showed mild-to-moderate aortic stenosis in the new valve. I now have a grade 3 murmur. My cardiologist didn’t seem concerned about it, saying I can keep running 2-4 miles a few days a week, and the plan is just to get another echo a year after the last one. She did remind me that the average TAVR valve lasts 10-15 years, but some wear out later and some earlier. Have any of you had stenosis on your new valve just a year after your valve replacement? I’m grateful for how quickly I recovered and how well I feel, but am kind of bummed about the echo result.

For those of you who had a TAVR, did you go to cardiac rehab? If so, when did you start it? The nurse said she would have the cardiac rehab people call me to set up an appointment. They haven't called yet, but I'm wondering if maybe I'm supposed to wait a certain length of time before going.

Hi. I had my TAVR on June 22nd (Thursday) and am happy to let you know that I am pain-free and feeling well today, 3 days later. I stayed overnight in the ICU. Had lots of nausea (which the doctors think was from the anesthesia) all night, but was much better the next day. (I had worried that vomiting could open the groin incisions, but that was not an issue.) By lunchtime Friday, I had a good appetite and was eating solid foods. When I came home Friday, I slept about 15 hours solid and was pretty low-energy yesterday. I think the low energy was partly recovering physically from the procedure but also partly from recovering emotionally from being in the ICU. (I had never spent the night at a hospital before that.) I have a huge (about 8 x 10 inches) deep purple bruise in my groin, but I have a bleeding disorder so I don't know whether or not that type of bruising is typical. All the nurses and doctors (well maybe all but one) and everyone else at Henrico Doctor's Hospital were A+. I felt I received excellent care. I am SO grateful that the eligibility criteria for getting a TAVR changed the same year I needed one.

I had my pre-op stuff done today (blood work, check x-ray, carotid dopplers). Working on finishing my "to do" list before going to the hospital at 7:00 Thursday. Like Laura Jacobs (entry below this one), I am feeling pretty calm (with a little touch of anxiety. This will be the first time I have ever been in the hospital.) It helps that every nurse, receptionist, radiology tech and doctor with whom I have interacted during this whole process have been kind as well as organized.

My TAVR is scheduled for Thursday. My doctors went over the procedure, the risks and benefits, etc., but now I have a few more questions. I'm hoping some of you can share your experiences with me. 1. How long after your TAVR did you feel fine? If you are an active person, how long until you felt like working out? 2. From your body's point of view, did it just kind feel like it did after a cardiac cath? After my cath, I came home, ate, then laid down and slept solid for about 10- 12 hours. The next day, I felt completely fine. For you, was it kind of like that?   3.Should I bring some PJ bottoms? I know they have hospital gowns for your top part, but what about your "bottom part"?   4.For some reason, the idea of having an IV in my neck feels so weird/uncomfortable. How did that feel? Very bothersome, or not that big a deal? 5. Anything else you feel would be helpful for me to know?

Well, I have 4 more days until my TAVR. I liked the second-opinion doctor as much as the first doctor I saw. I was very glad to have that appointment because I had a bunch of questions to ask. I had assumed that, because the second-opinion guy was in the same practice as the first guy, he would pretty much just rubber-stamp the original opinion in favor of a TAVR. But he didn't. Instead, he started from scratch (other than not needing to go over medical history, which was already in the chart). He spent an hour carefully explained OHS and TAVR and pros and cons of each and answering all my questions. I felt the information he gave me was very thorough and helpful. I am going to go to the hospital on Tuesday for blood work and a routine carotid artery scan. Then Thursday is The Day. I have "known" for the past 15 years that, whenever I began to have symptoms from my stenotic bicuspid valve, I would be getting open heart surgery. This is the first year that people in my category (medium-risk, sort of on the edge of high-risk) were eligible to get a TAVR. Great timing! I don't know if I'll feel very nervous the night before, but honestly, at this point, the main feeling I have is gratitude and also excitement that, if all goes well, I will be able to get back to so many activities that I love but have been unable to do for quite a while, especially running!!

I have an appointment tomorrow to meet a second surgeon in preparation for my upcoming TAVR. Because TAVR's for medium-high risk (as opposed to high risk) patients are not yet standard, some insurance companies (like Anthem, which I have) require 2 separate appointments with 2 separate surgeons who independently state that a TAVR would be the best option. Without a concurring second opinion, they won't pay. Assuming the second surgeon agrees, then I will be scheduled for my procedure on the 22nd. (I had originally had my TAVR scheduled for the 15th, but the nurse called today to say they're not sure the insurance approval will be back in time, plus the surgeon I chose will not be available on the 15th after all. I assume the other surgeon would be fine, but since I particularly like the one I already met, I'm choosing to wait and do it the following week.) Overall, I think the process (CT's, cath, blood work, multiple doctor appointments, etc.) is going fairly smoothly. My doctors are communicating well with each other, and the nurse keeps me in the loop as things go along. It helps that I recently retired so don't have to take off work for a million various appointments. I feel comfortable with the whole team and optimistic things will go well. :-)

Hi. In preparation for my upcoming TAVR, I'm having a cath tomorrow. Because I have a bleeding disorder (acquired von Willebrand's disease), I'll get special IV medicine called DDAVP prior to the cath to hopefully keep me from having excessive bleeding. The doctors will compare blood tests done before and then one and four hours after the cath to determine whether the DDAVP will work during the TAVR itself. Hopefully, it will work. But my hematologist is wonderful and I trust that she'll have a "Plan B" if needed. I'll find out the date of the TAVR after my cath, but I've been told it will probably be mind-June.

I will be having a TAVR procedure to replace my aortic valve in a few weeks. I have read up to the procedure itself, but I haven't found anything on what the experience is like from the patent's perspective. Can someone share with me your experience of having a TAVR? Afterwards, does it feel pretty much the same as it would feel after a cath? I'm going to have it on a Thursday. If I don't have any complications, when do think I will be back to my normal activities? Would I probably be fine to go back to work the next week? Is the only discomfort at the incision site? Are people usually completely put to sleep or just snowed (liked with a cath)? Do you typically go to the ICU afterwards? I'd love to hear any tips or experiences you could share. :-)

I had my first appointment with the cardiac surgeon on Tuesday concerning my upcoming aortic valve replacement. I thought we were going to talk about which type of incision he would recommend, etc. I had a bunch of questions I had written down to ask him. I knew about TAVR but hadn't read much about it because I had thought it wasn't a candidate for me. It turns out that he is recommending TAVR. He said that, because I take immunosuppressant medications and also have a bleeding disorder, he thinks a TAVR would be the safest option for me. He laster presented my case to the valve meeting at the hospital and all the doctors agreed with the TAVR option. For the past 15 years or so, I knew I would eventually be getting OHS and now I find out that I will be getting, if all goes well, a much simpler procedure with a much quicker recovery. I am so grateful for medical advances! I found out that the surgeon I have was one of the first in the country to start doing TAVR's, so he is very experienced. I know there are risks of complications, but I feel that he has thought the options through anad took his time explaining the pros and cons of the various options and his rationale for recommending TAVR. Next on the "to do" list: See my hematologist next week so she can give recommendations on how to minimize bleeding during the cath and TAVR, then a week later get my cath, then a week after that get my CT. They said I'll probably get the TAVR in late May or early June. But I guess the first thing on my list is to review all the TAVR info on this site! I had only skimmed it before, because I knew I would be getting OHS. :-)

Hi. I joined this site a couple of years ago in anticipation of eventually having an aortic valve replacement and maybe repair of a small ascending aortic aneurysm. (I have severe aortic stenosis from a biscuspid valve.) Recently, I starting have mild symptoms with minimal exercise, and my cardiologist said it's time to see a surgeon. My appointment with the surgeon is for the 19th. I am feeling optimistic about this surgeon because I have 2 friends who had heart surgery by him and my cardiologist highly recommended him and a friend of mine who is a nurse at the hospital where he works said she would definitely choose him if she had to have heart surgery. However, before I make my final decision, I want to see how the appointment goes. I have a bleeding disorder as well as a rare autoimmune disease that can affect the heart. I want to see if he is the kind of surgeon who only focuses on the surgical procedure or if he'll talk with me about plans related to the bleeding disorder and how to handle the small chance of complications from the immune disorder. I have learned so much from this site and am so grateful for Adam and for each of you for sharing your experiences and insights! I look forward to having the surgery behind me instead of in front of me. And, assuming all goes well, I'll be glad to be able to kayak, work out, go on long hikes, and maybe even get back to the running that I had to give up years ago because of this!

I have aortic stenosis (valve are about 0.8) and mentioned in a previous post that I had been having a lot of spontaneous bruising and was taking longer than usual to stop bleeding if I had a cut. My cardiologist referred me to a hematologist who diagnosed me with a platelet disorder caused by the clotting elements in the blood being sheared off as they scrape across the stenotic valve at high speed. I have read that about 20% of people with severe aortic stenosis get this condition, which can cause a little (not much) more bleeding during surgery. (The hematologist said it's not much of a problem during OHS because OHS is actually a much-less bloody surgery that a lot of other surgeries because of the heart-lung machine.) The platelet problem usually corrects itself immediately after a valve replacement. Has anyone else out there been diagnosed with this or had symptoms (like spontaneous bruises popping up scattered over areas you never bumped, or excessive nose bleeds)? If so, have you been told whether a platelet problem caused by aortic stenosis would be a reason to proceed with surgery in an otherwise symptom-free person?

I'm interested in hearing from people who had their surgery pretty far from where they live. I'll need an aortic valve replacement and probably repair of my ascending aortic aneurysm sometime in the next six or so months. There is good, small local private hospital in the town where I live, that has some cardiac surgeons with very good reputations. I also live about an hour from U Va and about 3 hours from Johns Hopkins. It would definitely be more convenient for my friends and family if I had it locally. But of course they want me to do what's best for me. I can't figure out how to tell where I should go. And what about the ride home? Isn't it really painful to be riding in the car for several hours after you just had OHS? How can I acces surgeon's statistics? If you ask the surgeon if they have a lot of people have complications or die or whatever, are they really going to tell you the truth if they have a lot of problems? I went on a website that's supposed to tell you the statistics but couldn't figure out how to access the information. Does anybody know how to find that information online? I have read the chapter in Adams book about picking a surgeon and it's helpful, but I still feel confused about whether or not to go locally. My cardiologist definitely feels like I should just have it locally --- that it's done all the time and it's not a big enough deal to travel for this commonly- done surgery when their are very good options locally. (she would support whatever I decide, but she just feels like it's kind of overkill to travel somewhere to go to a teaching hospital.)I don't know. I'd love to hear the process you went through to pick your surgeon. Thanks!

Hi. I joined this wonderful community a few months ago, but so far I have mainly been reading other people's experiences and learning so much from them! Today, I'd like to ask a question. Has anyone had valve surgery at the University of Virginia? I will need an aortic valve replacement as well as possibly fixing my small ascending aortic aneurysm. I live in Richmond but I'm thinking U. Va. may be my best option, specifically Dr. Ailawadi or maybe Dr. Kern. I know that competence is very important in a surgeon, but it's also important to me to have a kind person who takes time to explain things and answer questions. Also, at one nearby hospital, I found out that after the surgery, the Nurse Practitioners take over and you rarely if ever see the surgeon. I have nothing against Nurse Practitioners (I am one!), but I would prefer to have the surgeon who operated on me be readily available if needed. Plus, I have a rare autoimmune disorder that can affect the heart as well as a clotting disorder and feel that a physician overseeing my postsurgical care might be better than a Nurse Practitioner. I'd appreciate any comments people might have about UVa. Thanks!

Hi. I am going to have an aortic valve replacement and ascending aortic aneurysm repair some time in the next year or so. I have been having a lot of spontaneous dark red bruises and, if I am cut, it takes a lot longer to stop bleeding than it should. I read that people with severe aortic stenosis can develop bleeding problems (acquired Von Willebrand's) because the platelets get torn on the way through the ragged, calcified aortic valve. My cardiologist had never heard of that, but agreed to send me to a hematologist. She did a bunch of blood work and it showed that I do have me lad Von Willibrands and prolonged bleeding time, and that I'll need to get platelets with my surgery. Has anyone else out there had this issue? I go back to see my cardiologist in June. My