Sandy's Journal

Sue Maize  If only we just had the surgery to think about eh! Praying this all works out in your favour! 🙏🏻

susan harris  Sandy, I can't give you the exact answers to your questions but just that my 26 yr old son just had consult with Dr. Kendall Lawrence, surgeon, at Penn 2 weeks ago.  He had subaortic membrane removed 21 yrs ago at CHOP and now needs aortic valve.  From Adam's site, I found Ross procedure experts in NYC - hoping my son will agree to 2nd opinion.  Dr. Lawrence didn't "push" but mechanical valve was definitely her lead option.  I'm not convinced about Coumadine!   I learned from Adam's site that if you talk to 3 surgeons, you'll get 3 different opinions.  I am in Langhorne, PA.  Glad to get together for coffee if I can help.  esharris4@verizon.net

Susan Lynn  Sandy - Welcome! A good starting point when conducting your research is identifying surgeons who have the most experience in the procedure that's needed. The facility is important, but it starts with the surgeon and his/her history of success.If you provide more detail, it will result in more feedback from those who have had it done in and outside of Penn.

Jay Heagerty  Sandy, my surgery was two and a half years ago. I was asymptomatic until probably two weeks prior to my surgery. Same as you tired, a bit short of breadth ect. When I was a month or so out from surgery, I felt anxious and apprehensive. However, I had full faith and confidence in my medical team and our internal family plan. Also, I found reading Adam's book very helpful because the more you learn about the procedure the more confident you become. I had a bicuspid aortic valve replacement and a ascending aortic ayneurysm resection. I wish you well on your upcoming surgery.

Lynne Anderson  My cardiologist has described mine as severe asymptomatic.  After talking to my surgical team, I realize that my declining athletic performance and post-workout/race fatigue is most likely a symptom. My surgery is scheduled for May too and I feel like I'm on an emotional rollercoaster. One day I'm fine and the next I'm stressing, anxious and ugly crying for no reason. Glad to have the surgery scheduled but hate the stress of getting work and home stuff organized.

Valerie Allen  I think that emotional rollercoaster is extremely common. As the time draws nearer I am feeling a little more at peace. My main symptom is fatigue.

Daneen Douglas  I agree with everyone above. My surgery is coming up on April 22nd.  I’ll be getting my aortic valve, root, and aneurysm replaced. 

I have and continue to have increased symptoms.  I am very short of breath, fatigued, have some weight gain, swollen ankles, and lately palpitations  when laying down. Slow deep breathing has helped with that. 

So, I’m happy to have my surgery date close.  I’m still working and too busy getting all the details ready,  so haven’t really been able to focus on the date too much.  I haven’t cried about anything, but who knows the closer I get.  I am anxious, but more anxious to be on the recovery side and have the surgery and hospital stay over. 

Barbara deLoache  I have had fatigue which is sometimes pronounced. Also, even a minor incline causes shortness of breath. Occasionally my shoulders & upper chest feels tight. My surgery is in 12 days. I am not as anxious as I was a month ago. As I get closer I’m sure anxiety will hit me again.

Jennifer Fuller  I had my severely stenotic bicuspid valve replaced 5 months ago. Before the surgery, I thought I was not really symptomatic, but in hindsight, I really was. I blamed a lot of things - shortness of breath, fatigue, swelling - on aging and weight gain. I blamed my pounding heart on anxiety. Post surgery, I’m starting to see those symptoms fade away. I’ve even lost at least half a shoe size because my feet and ankles are no longer swelling. The surgery and the wait for it were stressful and hard, but totally worth it.

Rose Madura  I had slight symptoms that I kept putting aside as getting older, being out of shape, job stress, etc. When in hindsight, I was having SOB, extreme fatigue. It's old school to wait for symptoms of heart failure. The echo numbers will show what you need to do. As far as anxiety, for me, it wasn't too bad. I had multiple opinions, got a new cardiologist that I trusted and trusted the surgeon.  That, plus my faith that God would bring me through is what helped. Stay focused on the outcome which has odds in your favor for success.  God bless you in your journey.

Rita Savelis  I started to become short of breath when climbing stairs. That was the main symptom. Surgery probably happened about a year later. There is lots of emotion before, during and especially after. A lot to think about. This is all so normal. Talking to a therapist can a help. Take care.

Teressa Phillips  I didn't have a bicuspid valve, but by the time I was diagnosed, I had severe aortic stenosis. After the fact the symptoms I was experiencing were fatigue, getting out of breath with any change of elevation, and an odd feeling in my chest (not pain, burning, or pressure, just different).

As for the emotions, I had a rather traumatic start to my journey, so I was all over the place. I went in for an outpatient D&C on 11/8 and ended up in the hospital with 2 collapsed lungs and a million new diagnoses. I certainly felt like my body had betrayed me. It didn't help that while I mostly recovered from the lung collapse, I continued to get physically weaker until my surgery on 01/04. When my surgery was postponed mid Dec., I was almost inconsolable.

Post surgery has been a rollercoaster too. For about 6 weeks my body and mind felt foreign and not my own. I have only had 3 really black days. I am on meds for anxiety/depression. I don't know how I would have gotten through all of this without them. I'm still dealing with fears of going through all of this trauma and suffering to end up unalive in the not too distant future. Most of the time I'm grateful that if I had to have something majorly wrong with me, at least it was something that has had tons of research and innovation.

I encourage you to be very honest about your emotions with your care team, medical staff and loved ones. Also, there is something about the bypass machine that throws your whole body into chaos. My surgeon's NP told me that the body knows it isn't natural and responds to that. It is well documented that post surgery mental health is a significant issue for many, many heart surgery patients.

I hope you find peace in your situation and have a speedy recovery once you have surgery.

Lisa Letizio  I had a bicuspid valve and, at age 60ish, I started to experience minor but frequent shortness of breath - just feeling like I couldn't catch my breath, usually about 10x/day when I was at rest. I'm a pretty serious cyclist and I also noticed that my ability to do long mileage was decreasing. I used to ride, say 30 miles or so on my road bike in the morning and then start my day; at age 59, I could maybe ride 20 miles and felt like toast for the rest of the day. My cardiologist was also seeing me every 6 mos and doing echos which showed I was into the severe range. I had my surgery on 1/25/24. 

Allen Carkner  From my understanding, nearly anything could be considered a symptom due to severe aortic stenosis. Exercise intolerance, unusual fatigue, generalized feelings of dread. I mistook some of these as symptoms aa only anxiety but found them to be totally related to my stenosis. I couldn’t believe they made me stop my stress test while barely walking at a brisk pace due to my numbers being off. It’s a challenge because I also just thought I was out of shape.

Daniel Green  Hey Sandy, I had been followed for over 10 years for an ascending aortic aneurysm. During that time my aortic valve went from mild regurgitation to severe. The valve drove the surgery. My symptoms as far as I know didn’t exist, I’m a cyclist at was riding very strong prior to surgery 1/23. The issue was do I do nothing and wait until my heart enlarges and then have real probably irreversible problems or take care of it now. I was nervous but had a lot of faith and trust in my team. The surgery went well and they did a valve replacement, repaired my aneurysm, a maze procedure and clipped my left atrial appendage. Recovery was slow and sure and 3 months later I was back on the bike. I think getting it early before you have really bad symptoms is the way to go! Trust your team and you’ll do great! 

Jeffrey Woodward  Wow.  Sandy thanks for asking this question.  These responses make me feel like I am far from alone with these symptoms.  I went to ER after a dizzy spell, found some erratic heart beats last summer 2023.  What followed were little to no symptoms (an extra heartbeat noticed at night), and regular workouts on a treadmill and cables, and lots of testing.  I did not notice any decline in endurance until Feb 2024 when I went from 3 to .25 to 0 miles on an elevated treadmill in little more than a week.  Up till then the doc was in a watch and see mode.  When I notified him of decline, I was put on schedule for May 2 Aortic Valve replacement surgery.  Very similar experiences to many of the comments I see above.  Currently no working out, just walking, and not rushing, some shortness of breath, but by 4 pm, I am fatigued regardless of activity.  Up and down on emotions.  

Michael Kluse  I had my aortic valve replaced and my aortic root repaired May 15, 2023. I was diagnosed with aortic stenosis about 3 and a half years prior graded as moderate to start and progressing to severe in that 3+ year period. Over that entire time frame I was totally asymptomatic. Five days a week I walked 3 miles and did 40 push ups.  No symptoms.  However ECGs and a heart catherization confirmed the worsening valve to the point where I was urged to have the surgery. I had the surgery without complications on a Monday and was home on Friday. I had a great surgeon and surgical team and a great cardiologist. I was fully recovered in 3 months and have had no issues as I approach the one year anniversary of my surgery and my 73rd birthday.  I am back to walking, push ups, golf and all activities I was doing before the surgery. I feel blessed.  Trust your team and keep a positive attitude and you’ll be fine. 

Robyn Peacock  Hi Sandy, I had similar symptoms.  I was on a watch and wait for 17 years with a bicuspid aortic valve and an ascending aortic aneurysm.  Over the years, my fatigue, my shortness of breath gradually increased, and I just knew it was part of my illness.  However, about 6 months prior to my May 2022 Echo (I was going ever 6 months), my fatigue increased dramatically.  My brain felt so tired. I was 58, feeling like a very old 88.  I didn't want to tell anyone since everyone was already used to me having heart disease, and I felt like this was just going to be normal.  Fast forward to May 2022, and all of a sudden it showed severe aortic stenosis, (aneurysm was around 4.7-4.8 and stable).  My cardiologist at Cedars Sinai wanted me to have OHS within the next 30 days.  I knew the day would come and I was so excited to finally get fixed and not be worried about my aneurysm,. I went into the mode of "ALL FAITH, NO FEAR" for the next 3 weeks.  The depression and emotions hit me about 4 months POST surgery.  

Karen Hadden  Hi Sandy! I have all the same symptoms as you.  I wasn’t feeling nervous until about a week and a half ago.  I definitely started to get overwhelmed once I started reading my cardio binder the clinic gives you. Then everything seemed to get real.  I did download guided imagery from a couple of places and it is certainly my helping calm the nerves.  

Brady Busch  I don't remember having any noticeably major symptoms,other than maybe getting a little tired walking up long hills and years ago,while snow skiing,having to stop about halfway down a hill,when before,there was no problem going straight down.
Also,as a teenager,my two dreaded runs,were the 440 and 880 yard dash.They left me hacking.Soccer was another thing that wore me out.
Speaking to my first cardiologist,he said the stenosis,probably had been going on,for a long time.So maybe,when I was younger,but it was never noticed,until a doctor heard a murmur,in my early sixties.
The doctor,who supervised the cardiac cath,said my heart was strong and most likely compensated for the stenosis.
I thank my surgeon,for having a confident attitude,that helped me face the operation.
My prayers for everyone to receive healing and peace in the name of Jesus Christ.

Rajan Parrikar  I was asymptomatic but the stenosis in my bicuspid aortic valve had progressed to a stage that was classified as "severe." My cardiologist felt that an intervention (replacement) was the way to go before the onset of symptoms. I had my surgery just over a year ago (Feb 2023) in Reykjavík, Iceland. 

To mentally prepare, I would suggest a regimen of yoga, pranayama, or some form of meditation you are comfortable with. While it is a major surgery, it is today a routine procedure with very good outcomes. The first 24-48 hours post-surgery will be the toughest but every day following will bring noticeable improvement. All the very best to you.

Valerie Allen  Sandy, are they looking at your recent echo compared against a previous one? Are they concerned about it getting worse quickly? I had thought that 1.0 was severe territory, so it could be they see it getting worse quickly. I’d look into that a bit, certainly not questioning your surgeon but just curious. Btw I know the feeling of similar shock.

Isabella Heart  I thought the same thing as Valerie.  I do not have symptoms. Mine is .95 but the pressure is moderate and my cardiologist told me that I am not a candidate for the surgery yet. If you do not have symptoms, you should get a second opinion. 

Rose Madura  True that numbers don't lie but I always recommend getting a second opinion.  It will set your mind at ease as far as the urgency.  You don't want to mess around with this by trying to push the date out.  God bless you on this journey.❤️‍🩹

Pamela Gregory  You are at a great hospital. A second opinion (or even a 3rd) can help you wrap you brain around what is happening and what is necessary. I think everyone is in shock when delivered this news, but I can truly say from the other side of surgery that finding out and waiting is WAY worse than the actual surgery. Make sure they can put a large enough replacement in so that you can do TAVR in the future (or at least ask about it!!!) Make sure you feel confident in your choice of surgery and remember that they can fix you up and get you back to your life

Valerie Allen  Yes, there may be other factors. I agree, a second opinion would help to understand and reassure. Most if not all well known heart hospitals do 2nd opinions upon receiving your tests. You can call and put it in motion.

c w  Getting the CT approval was, bar none, the most frustrating part of my experience… The reason , for me, was that insurance kept denying it, so there was a lot of back and forth behind the scenes. Super frustrating., I was still reeling from the diagnosis and learning about my condition… I was far, far from being in acceptance mode. Hope you were able to get your prescription and your scan will go off without a hitch next week.

Valerie Allen  Some others may jump in with personal experience, but in the meantime you can go up to the menu top right and search under Surgeon Finder to find some info and reviews.

Daneen Douglas  Welcome Sandy! I was born with a bicuspid valve and have monitored my stenosis with cardiologists my whole life. Mine is now severe with aortic aneurysm and root dilation and my surgery is upcoming as well.

My mom was born with the same condition and has had countless surgeries since 1962 at Cleveland Clinic (She's in their medical journals). Of course they checked me at birth, lol!

I grew up with my mom in and out of the hospital for her heart conditions so I've kinda had to educate myself over the years. I'm still learning a lot from others and from the videos on this site. I didn't know a lot about aortic aneurysms and root dilations, only aortic valves. But, technology has advanced tremendously over the years!

My son was checked and does not have a bicuspid valve. It's a great idea to have your daughters get checked as it is hereditary for sure.

I look forward to hearing an update after your CAT scan and follow up in February.

Hang in there! As you can probably see, there are a lot of us out there!

Please ask away if you have any questions or concerns.

Daneen

Sandy Schemelia  Hi Daneen I do appreciate  the support.  Mine was found with a heart murmur.  Then it was time for me to see a cardiologist.  I was hoping I was a candidate for TAVR but not with a bicuspid value

Sandy Schemelia  Hi Valerie I appreciate your support. Not too sure who in my family might have had this.  My mother died of a stroke and she had a fib and my dad died of Parkinson disease  I went for a dr visit because I was not feeling well and they told me I had a heart murmur next thing I knew I was making and apt to see a cardiologist.  

Sandy Schemelia  Going to post this to see if anyone has seen Dr. Nimesh Desai - Cardiac Surgery from University of Penn If so what did you think of him and his staff.  I have and apt with him in February.  

Brady Busch  I wonder why a TAVR couldn't be done,with a bicuspid valve?All they do,is push the new one into the other.

Valerie Allen  Brady, I was tested for TAVR first and they said in general since the BAV is somewhat misshapen anyway, there is too much risk of it not being a great fit with the possibility of more surgery for regurgitation later.

Larry Peterson  Hi Sandy - welcome to the club!  I am 5 weeks post-op from a replacement of my bicuspid aortic valve and repair of my aortic aneurysm.  Because of the aneurysm, they had to do a full sternotomy for me.  Recovery is going well, back to walking 60 minutes non-stop.  While I can't advise that the past 5 weeks have been easy, it's all doable and actually less pain than I expected.  Getting the sternotomy to heal is what I am mainly dealing with now;  sleeping in recliner and not using my arms much.  Good luck in the months ahead!

Sandy Schemelia  Thanks Larry just need to wait for the apt and see what has to be done and what the time frame will be for me.  So its wait and see for know

Susan Lynn  Sandy - Welcome! We know it's a lot of information to comprehend all at one time. My best advice is to write down your questions, get copies of your test results, and schedule consultations with several cardio thoracic surgeons. There are many to choose from in your area in NY, NJ, and PA. You'll want to be ready to make an informed choice if you need to schedule your procedure soon. Best of luck with your research.

Sue Maize  Welcome Sandy! I have the exact same diagnosis as you, and there are many others on this site who do as well. I haven’t had my surgery yet but it might be around the same time as yours. In the meantime, I’ve found so much helpful information on this website and from the people in this community. Best wishes.