Kate's Posts

Hi Based on what you describe I recognize my self but I never went to a doctor to check until I had my syncope in London. I remember gradually getting worst now when i look in the rear view mirror with gradually loosing pace when running, almost fainting, getting real tired after 13-14 holes if golf and generally being tired. When I finally came in after my syncope in London they hardly dared to send me home to Sweden, finally after 2 weeks the did but the hospital in Sweden kept me there until they did the surgery after another 2 week. Now it is totally different, I have my stamina back, I can push myself to train hard without feeling I should faint and I feel much better. Inam not a doctor but it sound to me that you would get better to do it asap to get it behind you and start feeling better. ❤️

Hello Kate. I just read your post,I haven't checked in on this site for awhile . After 2 years of test after test it's finally been determined that at 60 years of age I have to be in worse shape/ more symptomatic to require surgery. I have a BAV with aortic aneurysm of 51 mm. I was very close to having a date set for this fall to have surgery. I stated that I would not accept blood transfusion....this became the fly in the ointment as it were. I should seek a second opinion since I've now been put on the shelf for a year for follow up with my Cardiologist and surgeon. I was hoping to get my issue sorted while im at an age to heal quicker in my opinion. Thoughts and prayers with you ! Hopefully You can get everything worked out soon.

Kate, Great to learn that you got a second opinion and learned a bit more about the severity of your disease. When it comes to timing the surgery for asymptomatic patients, I thought you might like to see this video with Dr. Chikwe - https://www.heart-valve-surgery.com/learning/early-surgery-aortic-stenosis/. Just some more information for you. 👍

Hi Tom, oh wow! I am moved to have had a positive impact in this community, as so far, I feel I am just benefitting from everyone's wisdom, experience and expertise, and only able to ask questions and express my anxieties. It cannot be overstated--this community is a lifeline for me!

After reading all you are going through, I realize I’m not alone! I had the same diagnosis in April of this year and after the TEE and Angiogram and the Stress Echo they are 100% sure I need the aortic valve replaced but because i am asymptomatic and I still run and play sports they just told me to keep my heart rate under 140. I’m 48 and feel like nothing is wrong with me but all the tests have confirmed it and now they have me on BP meds that keep my levels normal. They’ve asked me to get a BP monitor and check it daily and to let them know if it stays above 130/80 while resting…. And then let them know so they can do the surgery sooner so I don’t fall off a “cliff”… is how they termed it!! My anxiety gets me thinking… is that a pain I’m feeling?? But because I’m asymptomatic I often wonder if it’s all in my mind! That’s the weird anxiety I get!!! I come to this site to research and find people that are similar to me and it seems to put me at ease when I here they have went through surgery and they are now golfing or running or hiking!! I don’t think there is anything that will make the anxiety go away other than to just get the surgery done!! At least that’s what I’m coming to accept!! It seems like a nightmare I just want to wake up from because I honestly feel fine!!! But as I become more in tune with my body I’m accepting the fact that I DO have some Dull pain when I over exert myself!!! I’m starting to accept that this is the journey I have to go on and honestly this site seems to help the most because I know I’m not the only one that has went through this!! Hopefully learning and finding others who are on the same journey gives you more peace! Hang in there… we got this!!!!

Hi Greg and Chad, first of all thank you to Chad for summarising so well what the anxiety feels like--"how can we have this condition when we feel so good? And what exercise is appropriate and not 'cliff falling' dangerous" are among my questions and anxieties too. My middle name is anxiety!! LOL. I also have "chest pains" now which I never had before my diagnosis, so do believe that they must be psychosomatic for the moment at least. My most recent ECG and Echocardiogram were the same as the previous ones and my heart is pumping normally with no enlargement anywhere Sigh. It is good to have others--thank goodness you all want to express your feelings as much as I do!! In Chad's words, "Hang in there...we got this!!!" 🙏

Hello! I had, and still do, have lots of anxiety/fears/worries when it comes to my heart issues (and now a new one) I think, though, that i can deal with it so much better than before my surgery, because of time, more knowledge, less knowledge, my wife, and other things too, I guess. Our son has disabling severe OCD, so we are dealing with anxiety on a daily basis. When his goes over the top, all his muscles stop working. Instantly. So you can imagine what THAT does to an escalator ride! But I want to tell you a few things. 1. The anxiety won't hurt you, and you will get better with it, over time. 2. You are OK! 3. You are not alone in surgery. Not even close! You will have so many experts looking after that little heart muscle, from about a billion nurses to many doctors, anesthesiologist, Cardiologist, family and friends, and many others. 4. You are OK! 5. Your body is an amazing healer! 6. You are going to change for the better! You will come out a heart doctor (like you know...close to) 7. You are stronger than you ever thought possible, and when this is over, you will see what I mean! 8. You are OK. 9. You have got to (and you will) let the heart problems rest with the professionals. You cant do heart surgery on yourself (Thank you lord for that!!) 10. When it feels off, and you think it needs checking, do it! You may have some false alarms, but you will learn what those look like. ...so just sitting here, thinking about my own fears.. that could be my top ten. Did I mention, YOU WILL BE OK? The person you become is going to blow your mind! You'll see. You will learn to deal with these fears, trust me. I just found out (that's another story) that one of my vertebral arteries to my brain is severely plugged up (i don't think I like the word stenosis anymore! 😂 ) it is right at my brain, so they cant touch it. The old me would have FREAKED out! But now I just add it to the pile, and carry on...Went golfing two days ago. ...as for surgery.."you go in, you take a little nap, you wake up, you go home. Easy peasy! " have a great day!!

Thanks Chad! ...as for pain..our son also has Hereditary Spastic Paraplegia, which is really painful. I need to take the advice we give him.." don't let pain push you around, get up, and get moving" also dont take too many Tylenol 😂(yep, I got a story for that too, if you ever want to hear it)

Kate, My situation was similar some 11 years ago, except I needed surgery ASAP, even though I was asymptomatic. Feel free to check out my story and past posts. If I were you, I'd just keep doing what your doing and listen to your body. If you become symptomatic, schedule an appt with your dr. asap. Other than that, don't worry. The technology gets better everyday. Replacing valves is common place. The waiting will soon be replaced with choosing options and care plans....Tissue v Mechanical valve v. Ross v. Repair. OH v. TAVR v. ROBOT surgery. The Dr's should give you options. The only other thing I'd say is if available, go to a Hospital and Surgeon that is ranked very high for valve surgery and has done many many ops successfully. Nothing beats experience. Find the best....you are worth it!

Hi Kate! I’m in a very similar situation. I’m 46F (also with two sons!) and I have severe stenosis. My doctors have also recommended waiting on surgery, and when I got a second opinion, that doctor was amazed to see that I had no thickening of my heart muscle considering how narrow my valve is. Like with you, the only issue is my narrowed aortic valve. I am sorry you are in this situation, but also kind of glad to see I’m not the only anomaly out there! I was diagnosed with BAV and moderate to severe stenosis about 4 years ago and have been monitoring since then. I progressed fully into severe in November and expected surgery this summer, but then my echo in May came back with better numbers than in November (still severe and within the margin of error, but a surprise nonetheless), so I’m continuing to wait. I also have a long-standing struggle with anxiety and would never have guessed anything was wrong with my heart until 4 years ago! It’s amazing how after, and leading up to any heart appointments, my anxiety starts to create false “symptoms.” In case it helps you, my doctor suggested I look for symptoms that appear during exertion and are consistent. Luckily, that’s not what I’ve been experiencing! Another thing that helped was to stay off Google/Reddit/Facebook groups. They can be great sources of information and encouragement, but they can also give you way more info than you need. Other things that helped a lot were a mindfulness class offered through my health network, focusing on making memories with my kids (I’m an older mom, so they’re both still in elementary school), and seeing my 76 year old dad go through a surprise open heart triple bypass surgery and thrive afterward. I also started making a list of all the things I’m excited to do after surgery—hike, ride a roller coaster, travel, etc. After my echo last November I even planned a trip to Hawaii to celebrate being done with surgery. But now we may end up postponing since I’m not sure if my surgery will actually be done in time 🫠 Anyway, the anxiety is still hard, and honestly there are days when I consider just getting the surgery and getting it over with, but right now there are benefits to waiting, so I’m working through it. One surprise upside of the diagnosis is that over the past four years of monitoring, I think I’ve appreciated life more than ever. I’ll be thinking of you during this difficult time of being in limbo and as we each approach our surgeries, whenever they end up being scheduled!

Hi Kate. I'm in the same situation as you. I'm 46 years old and because I have a bicuspid aortic valve, I've been going to the doctor every year for 46 years, and twice a year for the last 20 years. For the last 20 years, I've also had dilation in my aorta, so in short, I've been constantly anxious for about 20 years. Every six months, when I go for a check-up, I live with the worry that the doctor will say I need surgery this time, and I'm honestly aware that it's getting closer. The shortness of breath, especially with exertion, really affects me. I can no longer play tennis, which I love so much. But this website and the support of the friends here make me feel that I'm not alone and give me strength. I live in Türkiye and I wish there was a group like this here, but I haven't found one yet, so I'm in contact with friends from afar like you, and listening to people's experiences is both encouraging and makes me happy. Being here with us will surely lessen your anxiety.