Isabella's Journal

Sue Maize  Facing heart surgery with even the most experienced surgeon is overwhelming Isabella—I could barely get through my first appt with a surgeon without stopping to get myself together. It’s also why communities like this one are so important to this whole process. It may be routine for them but it’s not for us. I actually had a word with my surgeon’s admin assistant last week when she commented (insensitively imo) on another patient as being a “nervous Nellie”. I was happy to remind her that empathy goes a long way in patient relations. The anticipation is hard; now that you know you don’t have to have surgery soon, try and focus on just living your life until that time—it’s great that you have a surgeon you’re comfortable with and trust. They’ll stay on top of it. 🙏🏻❤️‍🩹

Isabella Heart  Thank you Sue! And yes this community is amazing to have. First of all, it made me realized that I am not alone that there are so many people going through it and that its fixable. When I first learned I had stenosis I was completely devastated and a thought of a heart surgery was unimaginable. This community helped me to come to acceptance and feeling hopeful. 
Finding the right surgeon is also an amazing step forward! I left his office feeling empowered!

Rita Savelis  I still cry when I go to the hospital where I had OHS 9 years ago. Emotions are real. Crying is a good release and so very very normal.

Teressa Phillips  Because it is overwhelming. The emotions are BIG!
I'm glad you found a surgeon you feel comfortable with. 

Ana Brusso  Very interesting video. Never thought about delirium after both my surgeries. Glad that Terry came out of it well. 

Rose Madura  Wow.  I'm so glad I did not have that kind of experience. We all react differently and each one of us has our own journey. Thanks for sharing m very interesting.

Marie Myers  No, I didn’t experience delirium either. In my 45 years of being a nurse anesthetist, i have only seen 2 cases of delirium. Please try not to worry about this possibility for your surgery!

Sean Adkins  Only thing I experienced even remotely close to this was waking up with the sensation of not knowing where I was and feeling disoriented for a moment while recovering in ICU. The worst part for me was the initial pain medications after the surgery - oxycodone and fentanyl - time itself seems to almost stand still and all you want is for it to hurry up so you can recover. I believe I could have counted the flaps of a hummingbird's wings at that point. I had them stop the pain meds as soon as I realized what was going on and switched to Tylenol.

Yumiko Ishida  I think it’s scarier for those around you, because it may look like you suddenly have Alzheimers. My mother in law has never had OHS but had multiple delirium / hallucinations after cancer related surgeries. She recalls it as something funny, but it wasn’t funny for the family. If you do get delirious, just enjoy the ride, and trust that your loved ones will be there when you return.

Isabella Heart  I have moderate to severe stenosis! As far as the options for valve replacement, I don't think there is a difference either you have bicuspid valve or not. 

Allen Carkner  Bicuspid valves can impact the tissue of the aortic root more than typical valve morphology. I think the CT also provides more accurate dimension info for the aorta, and aortic root and the valve diameter.

Barbara deLoache  Yes, I could not have TAVR because my bicuspid valve made that surgery inappropriate for my anatomy. The CT SCAN  gives your surgeon very important information. 

meg oconnell  There are different kinds of valve replacements, mechanical or biological depending on your age, lifestyle etc. and the recommendations from your surgeon will help you decide. Good luck as you pursue this.

Isabella Heart  I read that cardiac MRI can create very detailed images of the heart without being exposed to radiation. My point is that we should not subject ourselves to tests that are somewhat harmful and look for alternative options if possible.

Andrew Dial  I think there are much bigger things to worry about than having that test done which is obviously necessary. The surgery itself is greatly more important and higher risk than a scan. I would not worry about that. Just my .02 🙏🏼❤️‍🩹

Susan Lynn  If you're considering a minimally-invasive side incision, a CT is required to ensure there's a clear path from the femoral artery to the heart for the bypass connection. It never hurts to ask for other options.

Teressa Phillips  I know one of the big reasons my surgeon wanted my pre-surgery CT was to measure the size of my valve root to see what size valve would fit. While in the hospital they will be doing quite a few chest x-rays post surgery. The good news is the exposure levels with digital x-rays is significantly lower than traditional x-rays, like 80% less. One x-ray is equivalent to less than 2.5 days of the normal radiation you experience. If you are not comfortable, talk with your doctor. 

Rose Madura  It's old school thinking to wait until you have symptoms. If the tests show you need surgery, go with the test results and be thankful that you are physically capable to recover well.  That's my two cents.

Susan Lynn  I agree with Rose. Exercise tolerance can be a measurement of your valve disease, but it isn't the only one. Valves that aren't functioning properly are over stressing the heart. Sometimes what you don't see can hurt you. Wishing you the best of luck with your decision.

Allen Carkner  I read many of the guidelines in the US and it seems that a severe stenosis diagnosis of the aortic valve of a certain gradient, velocity, and valve area is usually required before surgery is indicated. Most of these say with symptoms. But symptoms can be nearly anything and include those upon exertion. Only if those three metrics are “severe” is it typically recommended to have the replacement done from my understanding. It’s a balancing act between not letting your heart get weakened and or hypertrophied but also keeping your own living valve for as long as you can because the options for valve replacement are amazing but imperfect. Best of luck on your valve journey. The timing of surgery is a complex decision including many factors and is different for everyone.

Nancy Bukowski  Well stated, Allen.  I am in a similar situation as Isabella and decided to move forward due to not wanting to compromise my heart function.

Yumiko Ishida  I would seek opinions from multiple cardiologists. When I was trying to decide, the opinion was split. Many thought I should wait until symptomatic, but others thought I should go ahead before it became an emergency. Factors to consider: likelihood of rapid decline, likelihood of another surgery (unless you are getting a mechanical valve), current general health (how well could you recover), other medical issues (is there something else that should be dealt with now instead of postponing another 3 months, or is the valve contributing towards other things like enlarged chambers), when is a better time to take two months off (work and/or family commitments), etc.

Sue Maize  I had next to no symptoms a year ago but my gradient was 65 and my surgeon said that I should have had it then. Now it’s 92, and though my symptoms are definitely present, I’d have no idea that inside was a ticking time bomb had I not known about my stenosis. 

christine blackway  I was in a similar situation, not stenosis but moderate to severe MV leak with the only symptom of palpitations,  controlled by beta blocker. I decided that while I am in good health with no heart deterioration that it was time for surgery. If it's inevitable,  best not to put it off as you never know what could happen while waiting. Studies show mortality rate drops the longer surgery is delayed. 12 days post op now and so very glad it's over with. Recovery is not bad so far. Walking three times a day for 18-20 minutes and doing light household chores. Pain is minimal (full sternotomy).
Good luck to you!

Isabella Heart  Thank you for your thoughts everyone. I  am thinking  as Allen Carkner mentioned to keep my own valve as long as possible (of course not to the point of an emergency). Especially that I know for sure that mechanical valve is not for me. My only option is Ross procedure or Inspiris Resilia bio valve which unfortunately does not lasts forever. 

Alexander Casler  I was in a similar situation, 3 years ago I was diagnosed with severe stenosis and regurgitation at age 30.  

My peak gradient was 78 then and is 49.7 now, I was pushed towards surgery in the beginning but decided to hold off due to lack of symptoms, which I'm glad I did.  I also had an exercise test and achieved 14.3 METS right after the severe AS and AR diagnosis. 

Isabella Heart  Alexander, I just read your story! It's incredible! How is it possible that your stenosis got better? on its own? This is my dream. I hope the same thing will happen to me!

Alexander Casler  Peak was 78, now 49.7 and mean was 44 now 30.

I have posted the routine I developed after my diagnosis in my guestbook.

https://www.heart-valve-surgery.com/journals/guestbook/alexandercasler

Marie Myers  Good question! Have you had a cardiac surgery work-up to know if you are a candidate for  a Ross Procedure?

STEPHEN MORRIS  I opted for bio because of my job and lifestyle. (Although, at the time, wasn't sure if that lifestyle would be the same).

Sue Maize  The beauty of this website and community is that you will encounter many who've had each of these procedures, so good for you for inviting that feedback. There is a video index on here that has links for both types of surgery and would be helpful as you do your research. The thing to remember about the Ross is that its success also depends on a surgeon who is well practiced at it. As I've been advised (because I'm facing the same challenge), you'll want someone who has performed a high volume (at least 75-100+), does them frequently, and has good outcomes. Good luck with your research and decision!

Grace Mason   What is right/better for one person of a certain age won't necessarily be the same for another person. It is really a combination of what your surgeon recommends (hopefully, you are getting more than one opinion) and also what you feel comfortable with yourself. 
I agree with Sue about going to a high volume Ross surgeon if you go that route.

Rose Madura  Your question is one that only you can answer.  Do your research and get more than one opinion.  You then make a decision and run with it. Please keep us updated.

Tiago Rocha  Hi! First of all don’t be scared! A lot of us “been” there! The moment we understand that we have something is scary! However we can go through it with all confidence! The choice about the type of valve or procedure should be taken after a reflection considering what is your current health condition, your future expectations and your desired lifestyle. It’s not a decision to be taken lightly but for sure it’s not a nightmare. It’s very important that you feel confident and after that everything will run smoothly! I’ve opted by the bio because of the lifestyle considering sport and less restrictions against the anticoagulants control. I know that I might have to replace it again in time but my choice suits me and I’m comfortable with that. Take your time, talk with your doctor and be easy with yourself. One thing you can count: You will always have a solution!

Grace Mason   Isabella, 
Try deep breathing & listen to some calming music, or do something physical if you don't have restrictions(endorphins are great!). These things helped me when I was feeling especially anxious or down❤️
As my surgery drew close, I also asked my PCP for something to help with my anxiety and he gave me the lowest dose of lorazepam to use as needed. 

Valerie Allen  Seems a number of us have been going through a low time lately! In addition to what Grace said, I think there is some benefit to letting those emotions out. And after a bit you get back to equilibrium and even positivity! It’s a roller coaster. Sending you hugs ❤️

Yumiko Ishida  It’s ok to feel down. Shed as many tears as you need to. Take a deep breath when you are ready. All of Grace’s suggestions helped me, too. (Except for the anti-anxiety med, which dropped my BP too low.) I would add meditation, alternate nostril breathing, tapping, audio books (sometimes it’s the only thing that could drown out my own thoughts), and herbal tea. 

Sue Maize  Prayer gets me through the anxious moments—I’ll definitely be praying for you too Isabella. 💕🙏🏻

Valerie Allen  Yumiko I forgot all about alternate nostril breathing….thanks for the reminder. It does calm one down.

Susan Dunne  Isabella, I know how you feel.  My diagnosis came out of the blue.  I've had a heart murmer from birth so when I found out about the stenosis I freaked out.  It has been almost a year and now the stenosis of my aortic valve is very severe.  I am mostly asymptomatic except some shortness of breath.  I will be having OHS on Feb. 19.  Don't want to wait because I am 83.  TAVR is not an option for me.  I am here holding your hand as you go through this.  We will be OK.  Breathe!

Ana Kelton-Brand  Isabella, like most of the people on this forum, I was so scared, sometimes terrified, in the months/weeks before my surgery.  My mind went to some pretty dark places.  Lots of crying.  I tried to give myself time to feel, talk about those feelings, and then tried to keep busy.  I've never meditated so much in my life! Check out the Calm app and the 10% Happier app.  If you have a hobby, now's the time to dive into it.  In spite of all my efforts, the anxiety persisted;  but I was able to get breaks from it by refocusing (even briefly) on whatever I was doing in the moment.  Having anxiety doesn't mean you're not strong.  You're having a normal reaction to a scary situation.  I also asked my doctor for something to help me sleep at night.I am 6 weeks post-op.  It hasn't been easy, but it's good to be on the other side of the surgery.  Keep reminding yourself that this is what your doctors do every single day, thousands of times.  They will take good care of you and you will get through it.

Pamela Gregory  I like Grace had my primary care dr give me something for anxiety. Waiting is the hardest part no question. Try to do lots of things that you enjoy doing. I think a message was helpful too

Grace Mason   ☺️Ana, there is a drop down arrow at the top right of your own messages that allows you to delete and edit.

Ana Kelton-Brand  Grace, you're the best!!! Thank you for telling me how to get rid of the evidence that I'm a technological dinosaur!  Bless you!

Isabella Heart  Thank you my heart family! You are the best!!! ❤️
I am also getting over Covid, I am sure it put me down emotionally as well - I feel tired all the time and I don't know if its my heart or Covid. Can't wait to know the date of my operation (even though it scares me out of my mind), being in a limbo is nerve wracking. 

J Alexander Lassally  Hi Isabella. I am 51 and just did this for my Mitral Valve - so I hear you loud and clear (now 9 plus week post surgery)... Definitely a journey and definitely not easy... Happy to share any aspects of the acceptance and process. 

Isabella Heart  Thank you J Alexander The acceptance process is definitely hard. One day I feel like I am accepting it and another I can't stop crying. Also, I feel like I am in a limbo.

Isabella Heart  How are you doing now after two months post surgery? How do you feel? How is your scar healing? What kind of surgery did you have? (fully open or minimally invasive?)

Pamela Gregory  Hi Isabella, I found out 10 years before I had my bicuspid aortic valve replaced and it was horrible mentally for me. I could only imagine the worst and worried endlessly about pain. I had my surgery 15 months ago at age 55 and can tell you that my experience was FAR BETTER than my mind had me envision. They controlled the pain very well which was probably my biggest fear. I was asymptomatic until the end before surgery. It is a gentle process after surgery but as long as you are not in a hurry your body will get back to a relatively normal state in a few months. I had surgery Oct 17th and was on a cruise in the Caribbean early February. I wish I knew about this web site earlier in my journey because once I found it, I could ask all the crazy questions in my head and real people who had recently experienced this surgery could answer honestly. Please don't hesitate to ask anything. Hang in there

Klara Čičić  Dear Isabella, you are at the right place for comfort, understanding and reassurance. We have all been there and know how you feel. Educate yourself as much as possible through amazing videos from this site, read success stories and you will feel better and stronger and more brave each day! 

Isabella Heart  Thank you Pamela and Klara! It so helpful to know that there are people like me who actually went through the whole process and survived it. It has been a month since I know and accepting it is still very hard. I am so grateful I found this website. Sending you love 💕

J Alexander Lassally  Hi Isabella -I do hear you on the acceptance. For me it was kind of an invisible light switch that came as I acquired knowledge about the procedure. Finally, I felt armed and then felt the resolve to go forward. But until then, I was not ready - telling the local hospital to stop calling and leave me alone ! I rejected their pushy preachy attitudes and am so glad I did ! 

I was very particular about who and where. Doing about 8 interviews and calling more than a dozen hospitals. I also read deep outcomes meta analysis, and STS data. As well as medicare quality data. 

I had the full open sternotomy at Cleveland Clinic. I went old school and am glad I did...  The scar heals well, the pain is manageable, and really, it is about biding time and letting your body heal. It will. I look back on the experience in a positive light - feeling empowered and proud of myself. (Please know I started out a huge proponent of "minimally invasive" and then evolved).

You will need to find you own inner warrior - whatever that is or how it looks, but taking time to prepare is key to that... 

Klara Čičić  Isabella your feeling are so normal and expected. It is a huge deal, but this surgery enriched our lives and gave many of us a new perspective. We are more grateful, that is for sure. You can do this, you have the right attitude and you've found this site on time haha! Step by step, day by day, your anxiety will be less and less, and we will be here for you through this process. Just remember always that statistics are on your side, that you have the best surgeons in the world, and that there are many nastier diseases....more difficult to treat and much more debilitating. We are in fact lucky our thing is fixable :))

Susan Lynn  Isabella - I whole-heartedly agree with Klara. We have all been where you are - pretty darn scared! And to further echo Klara's sentiments, we are fixable. There really isn't a question mark at the end of the sentence when we're told we need heart surgery. Heart valve issues don't improve on their own. Do your homework, educate yourself, choose the surgeon, team, and facility you trust and do it. There's only one path - forward. Denial and procrastination are not options.

You are already going through the most difficult part of heart surgery - waiting! Everything else is very doable. You can do it! We'll help you!

Isabella Heart  Klara and Susan, thank you for your support - you understand well how much I need it. I feel I gained new family ❤️ You are right its something that is fixable. I will try to put it in front of my mind. I am lucky, I have a very supportive husband (especially that I lost my mother to cancer 10 years ago)  He is amazing doing all the research and trying to support me as much as he can.

Not knowing when - it's very uneasy. Also, I don't want to tell any of my friends or family yet. I don't want people feel sorry for me, also to avoid talking about it. Here, I feel safe!
I am so glad I found this site! I wanted to join the Facebook group but I don't want anybody to know. 

Susan Lynn  Isabella - I only told a very small group of people. I was 57 when I had my surgery done. First, my friends and family worrying about me certainly wasn't going to make me feel any better. Secondly, I didn't want to hear all the stories of every surgical procedure gone wrong - people think they're helping, but they're not. Finally, I didn't want my surgery to be the most memorable thing about me. We are not our conditions. When it was over, it was over. I'm happy to chat with people on this site or others facing heart surgery, but day in and day out, I really don't want it to be a regular topic of conversation.
This is your story to tell - do what makes you comfortable. The one unintended gift you get from heart surgery is clarity - there's nothing like it to create perspective and priority. The small stuff really doesn't matter. What your friends and family ultimately think about your choice to keep your information private is their problem not yours.

Valerie Allen  Hi Isabella, my surgery isn’t until April but I found out last May I needed it. Not urgently. But I know all summer I couldn’t talk about it without at least tearing up, sometimes just bawling. Hang around here a while and you will be inspired and learn so much! 

Grace Mason   Hi Isabella,
Welcome! It is scary thinking about such a major surgery, and like most, I too, was very afraid of many things, and like Pamela I found the actual surgery and recovery not nearly as difficult as I imagined(age 56)
Finding this blog site really helped alleviate some of my fears before surgery and emotionally, it was huge in helping me connect with people who could truly appreciate the magnitude of feelings and the rollercoaster of recovery. 
I am 4 1/2 months out from surgery(I had a bicuspid aortic valve replaced thru a Ross procedure and aneurysm repair)and my experience at Mt Sinai in NYC was excellent. I spoke with several surgeons before deciding where to go.
I recommend getting more than one opinion. 
If you have any questions or just want to express your thoughts we are here for you ❤️

Isabella Heart  Thank you Susan, Valerie and Grace - your support means a lot to me. After having this chat I do feel better Finding a good surgeon is not an easy task. I met with two doctors already and did not feel that there were the right ones yet. Do I expect too much if I need to feel some kind of connection, personality or a bit of empathy?

Rose Madura  I think in a way I was blessed to have known for most of my life (since I was 7) that surgery was inevitable. I didn't worry about the heart surgery itself but mainly about "going under". That being said, once I had an ablation for SVT and then a hysterectomy, I wasn't as scared.  I got a second opinion (which I highly recommend) and as a result switch cardiologists.  My surgeon was the best in my region and I heard great things about him from four nurses. So, I knew I was in good hands.  You DO need to feel comfortable with your cardiologist and surgeon.  As others have said, do your diligence and research facilities and doctors.  We will be here for you. God bless you on this journey.

Grace Mason   Having trust and a connection with your surgeon is important. I found not only talking with them personally but also reading and viewing anything I could find online about each surgeon, be it videos found in Adam's blog search or papers published, helpful in that regard.

Valerie Allen  If you haven’t looked at the Surgeon Finder via the menu on the top right of this page, do so. It has reviews. To me success rates are key.

c w  I love these responses so much. So much kindness and wisdom here; it all resonates with me. Thanks everyone.

Sue Maize  I have the exact same diagnosis as you and have known there would be surgery one day for about 10 years—I never really thought about it because my cardiologist told me I’d likely be in my 70s. So when I found out just before Christmas that I’d be having it within a few months (I’m 56), I kept breaking down in tears in front of the cardiac surgeon I was referred to. I didn’t sleep well for the next 3 weeks and obsessively read everything to the point of almost needing an intervention! 😅I didn’t know what questions to ask or anyone who had the same condition as me.  Terrifying is a good way to describe it. Then I found this group and was amazed at how well versed everyone was about heart valve surgery—thought they should all be honorary MDs! I started asking questions and watching the videos and it was incredibly empowering. I even fired my surgeon and had my cardiologist refer me to another one I discovered by wanting to learn more about the Ross procedure. This is a wonderfully informed and supportive community and you will get through this as others have done. Do your research and don’t be afraid to ask for as many opinions as you need to feel comfortable with your surgeon. We’re all here for you Isabella. 💕 

Isabella Heart  Thank you Sue! I am so glad I found this community. There is so much love, kindness and ❤️ here! I am in a limbo right now. I was diagnosed day after Christmas. I always knew I had a marmur, but I thought it was not a big deal until my echo test - I could not stop crying. It was so unexpected!
I don't have any symptoms yet, but my test shows severe stenosis, but the pressure inside the heart is moderate, so maybe that is why I do not have the symptoms yet. I guess this is time for me to do all the research and find the right surgeon. I keep hearing about the Ross procedure - I have to learn more about it. Sending love 💕

Daneen Douglas  Isabella,

Knowing this condition is common is helpful and hearing all of the member stories helps as well. I'm getting ready for aortic valve/root replacement, and aortic aneurysm repair in a couple of months. Being a part of this group has helped me be as comfortable as possible following this process.

I'm sure this was shocking, finding out so suddenly. I'm 52 and knew I had a bicuspid aortic valve with stenosis from the time I was born, due to my mom's heart history. Mine just progressed to severe about 9 months or so ago, but I've had noticeable symptoms that have impacted my daily life for a couple years. Just recently I have started feeling angina at times so they say once you have symptoms and are diagnosed with severe stenosis the mortality sinks to 50% after 2 years. It's important to listen to your body. I thought some of my symptoms were due to getting older and putting on a few pounds. But, that was not the case.

So if you notice shortness of breath, chest tightness, or dizziness during physical activity where you once did not, please take that seriously and bring that up to your cardiologist. Also, increased fatigue, headaches, coughing, and ankle swelling are symptoms as well. Take care and listen to your body. These symptoms are subtle and creep up slowly so sometimes it's hard to realize it's happening.

Take care of yourself,

Daneen

Dan S-otts  Hi Isabella, The best news is you have time to choose the best hospital and surgeon for you. The bad news is the games your mind will play with you while you make the decision when and where. I focused on what my life would be like after the surgery and it’s been fantastic. Good Luck! 🙏🏼