Tyler's Journal

(updated valve story as of 5/18/22)

Howdy heart friends <3

I'm writing this as I prepare for my third heart surgery, more than likely happening this upcoming fall (all of which happened in the last year and a half).

My name is Tyler and I am a 32 year old musician/environmentalist/runner that lives in South Philadelphia. I was also born with a unicuspid aortic valve, which I have monitored my entire life. This leaky valve created an aneurysm that had grown enough to justify addressing in the fall of 2021.

On February 1st 2022, I received open heart surgery by Dr Thomas Sloane Guy at Jefferson Hospital, in which they replaced my aortic root, gave me a mechanical valve, and an aortic graft. My recovery period was extended to almost 6 months due to an infection that occurred during the surgery.

I was able to get back to "normal life" once this cleared up, and even celebrated my 1 year post-op by running a half marathon!

Around the same time, a CT scan showed that I had a pseudo-aneurysm above the graft on my ascending aorta. No way to determine exactly why that happened, but more than likely, this was also due to the infection.

On May 1st 2023, I underwent a TVAR procedure by Dr. Abai at Jefferson, where they hoped to provide a stent to cover the area of the new pseudo. This is a tricky procedure because of the force of blood going through your aorta.

During the procedure, the stent shifted due to this force of blood flow, and the stent blocked my brachial artery, which required them to place 3 additional stents to keep my alive.

Because of the surgery becoming more complicated, the operating time was extended. This additional time was the catalyst for a blood clot to form in the intravenous site on my right arm. They were able to successfully remove it, though I have a 4ish inch incision on my bicep that is still healing.

Then, on the site they entered intravenously under my left collar bone, another pseudo aneurysm formed (about 3.8cm in diameter), which was pressing on a nerve plexus around my left shoulder. This has caused severe nerve issues in my left arm and I have no ability to flex my left bicep, and little feeling in my thumb, pointer, middle finger, or forearm. They gave me a thrombin injection to coagulate the pseudo, and ideally the nerve issues will continue to heal up. All this probably occurred because I was already on Coumadin for my mechanical valve, and that kept the TVAR sites from healing properly.

Even with all this, another scan showed that because the additional stents were needed next to one another, this didn't allow the larger ones to fully deploy.

So the initial aortic pseudo wasn't even covered, and an additional third surgery will now be needed.

As of right now, I am still healing from the 2nd attempt, and I am beginning appointments to learn of what the 3rd surgery will even look like. More than likely, they will have to replace the majority of my ascending aorta with another open surgery, placing me in a deep hypothermia, etc. Very complicated stuff.

I'm going to speak with surgeons at Jefferson (Dr Plestis), Einstein Montgomery (Dr Singer), as was as Penn (Dr Bavaria).

Really at this point it'd just be pretty cool to survive... the basics haha. I am remaining optimistic!

For the last 4 years I was working physical labor at a job I absolutely loved for a small composting company. These new challenges are forcing me to rethink my career. Something that feels very clear to me is that I would like to use my story to help others, and I am very interested in trying to find grad programs to become a therapist. There really was almost no resources provided to me on the mental side of this health crisis, and I am viewing that as a void I could help to fill.

In the meantime, Im looking into becoming a life coach, or other ways to make an income remotely. Ill probably need to do a fundraiser event of some sort to help me make ends meet, so I can heal properly and figure out this next step in my education. Ill be sure to keep this community in the know with all these things and would love your thoughts, recommendations, prayers, or support!

Heres a picture from a beautiful day, that my amazing girlfriend took shortly before my 2nd surgery. Doing my best to hold onto that positive energy I was feeling, and I hope it radiates outward to ya'll as well.

Wishing the best,

Tyler

Psuedo-aneurysm question:

Hey friends!
Got a surprise obstacle, even though it was only a few weeks ago that I was posting about running a half marathon to celebrate my one year.

Found out after a CT scan that I have a pseudo-aneurysm that formed at area my aortic graft is connected to my organic tissue.

Thankfully I’ve been told if I act soon, it can be fixed intravenously using a stent.

Anyone else have any experience with this situation? Thoughts? Things I should be concerned about?

thanks!

Celebrated the one year anniversary of my new valve by running 13.4 miles (length of a half marathon), which is the longest distance I’ve gone since the surgery <3
Ask me anything!

Summary:

My name is Tyler and I am a 32 year old musician/environmentalist/runner that lives in South Philadelphia. On February 1st of 2022, I underwent a sternotomy by Dr. Thomas Sloane Guy at Jefferson Hospital. I was given an ON-X mechanical valve as well as replacing my aorta/aortic root with a graft. This was performed to fix a unicuspid aortic valve as well as a slight aneurysm of my aorta (measured at 46mm). Plenty more details in my valve story section as well as past journal posts.

Intention:

I thought about typing up a very detailed account of each phase of this surgery, but really that's what Adam’s book is for! Instead I hope to provide some honest insight to how this experience impacted me physically/emotionally in some key areas and how I continue to navigate it. Maybe some of this post will be stating the obvious, or repeating some of Adam’s advice, but I hope whoever reads it can find some good pieces of info that might not be shared elsewhere.
Though I am proud of myself for the personal strides I've made in the last year, it is my goal to continue this transition from being the patient in need of care, to being a resource to others in hopes of providing security for those of you that are currently facing similar situations. Of course I'm happy to provide any details that’d be helpful if you have specific questions.


Pre-surgery Advice:

- Stay consistent with your appointments and check ups. I knew since birth that eventually I'd need to address my heart issues, but I got lazy with monitoring it through my late 20’s. If I hadn't followed up with it when I was 30, things could have been a lot worse.
- It is so important to build a network of people around you. I am so thankful that I had my family, my girlfriend, and some close friends as my main support. People in your life that will help you do the research, come with you to appointments, digest the information you’re being told, and to help you make these difficult decisions.
- You must come to a conclusion yourself of what you want to do. If you decide to go through with the surgery, you must own that decision. Then you must envision a strong recovery, to remain optimistic, and push any doubts aside. Our emotional state can quickly manifest in a physical way. If we are stressed, we can become sick. If we feel balanced, our health will reflect that.
- GET A SECOND OPINION! You’ll probably find yourself thinking whether you should speak with a 3rd, 4th, or even 20th surgeon to get their opinion.. But i'm relieved that I spoke with two different surgeons before going through with it.
- This will all take A LOT of time. Be prepared to put in the work. Being on the phone with different medical offices, insurance companies, etc… This took up the better part of 4 months leading up to the surgery. Sacrificing a few months to help with a potentially life saving operation is all worthwhile.
- Address it sooner than later. There was such a huge gray area of trying to determine when exactly I needed to address my valve. I was non symptomatic. But just because you aren’t having difficulty breathing, feeling lethargic, whatever the symptom may be, doesn’t mean that everything is actually fine inside of you. I kept thinking “what if” I didn’t actually need it done? And why am I altering my body, potentially putting myself at risk of other things by undergoing an intense procedure? It wasn’t until afterwards that my surgeon explained how much worse shape and calcified that my valve was once he operated. Don’t wait for things to get worse.
- Get yourself in the best physical shape that you can leading up to it. Taking care of your body beforehand will only help with the healing process. Changing your diet. Cutting out your vices. Not only is this important for healing, but once you have recovered, you’ll still have to address these issues you dealt with beforehand. They don't just go away because you got heart surgery. This could be alcohol consumption, smoking, other drugs, unhealthy foods, etc. It’ll only be tougher and more dangerous on your body if you choose to continue those things after the fact.
- Also get yourself in the best mental state you can leading up to it! It helped to find mindfulness and meditation practices that worked for me. Thankfully for years prior I was already very inquisitive about this area. Podcasts like 10% Happier, or apps like Waking Up with Sam Harris, Headspace or Calm… all great beginners resources. Practice yoga. Deep breathing is crucial. The surgery on my aorta was directly linked to my lungs, so I needed to do a lot of breathing exercises in recovery. It's good to give yourself a head start.
- Remember that even if this surgery is happening to YOU, all of your loved ones are also experiencing this too. Do your best to give them support as well by truthfully communicating and being vulnerable. We are a mirror to those that we are closest to, and sometimes they can see things from a perspective we might have overlooked. Take their advice seriously and make sure they feel listened to as well.
- Find yourself a therapist beforehand. Unfortunately the mental health industry is consistently overbooked and this might take a long time, so be prepared to wait. Even with family and friends to help me, having someone else to speak to, completely unfiltered, was very useful.

**Expand your tool box NOW instead of trying to learn all these things while you’re in the midst of recovery**

Recovery:

- Use general recovery timelines as a point of reference, but prepare yourself for it to take longer. I was told that by the 6-8 week mark, that I would be cleared to return to work. It took me double that amount of time, about 4 months (of course this might be different if you work in an office setting). You will heal, but you cannot rush it.
- Along with recovery time being different for everyone, do not be surprised if you have setbacks. I’ve written about this before on this site, but my incision got infected about two weeks out from the surgery, and I spent an additional week in the hospital. This then resulted in needing to wear a wound vac on my chest as well as being on a heavy antibiotic regime for 4 weeks. Remember that no matter the obstacle or frustration, it will pass.
- Please advocate for yourself. Have others around you, especially during the first few months, that can advocate for you too. When a doctor asks you to rate something on a scale of 1 to 10… just go with the higher number. Medical teams aren’t malicious, but they are overworked and understaffed. If you try to be humble and use a lower number, it's likely they'll push your concerns aside. When it came to my infection, I was asked to text pictures of how it looked, which can be difficult to assess from just an image. Take action and get yourself seen in person at an ER if able with any concerns.
- Bug the hell out of your medical team with every little question. I remember feeling really bad that I was being annoying. But who gives a damn, it's your body. New things might pop up day to day, and you deserve answers.
- Go slow! Maybe this is just because I was a very active person before the surgery, but it was extremely difficult to not attempt to stretch in certain ways, even basic yoga moves for 4 months. Even after you get the green light to move past your sternal precautions, continue to go slow!!
- Invest in a recliner chair or an adjustable mattress frame. For that four month period of sternal precautions, it was very painful to lay flat on my back.
- Use your spirometer! Don't stop once you leave the hospital.

Living with a mechanical valve:

This has been one of the more surprising areas that I didn't fully prepare myself for before the surgery. I weigh an average of 135-140 pounds and have always been pretty lean. Because of this, the sound and feeling of my new valve/graft is extremely noticeable. I hear its “click” all day, every day. Others around me can hear it if the room is quiet enough. Over the last year, the sound doesn't bother me as much as the palpitations. It's almost like someone is knocking on a door, inside my chest, if that makes any sense. I had multiple appointments in the earlier months, trying to determine if this was all ok. I tried beta or calcium channel blockers to see if that would lessen the intensity. I was also told that sometimes with surgeries, they are not able to reattach the pericardial sac that your heart is in, which typically helps to dampen the sound/feeling. But after speaking with my surgeon about this, I found that mine was reattached and that everything was functioning as normal. It's just the way life is now. This will be very difficult to assess early on because you’ll probably be hyper aware of your body, and any change could come off as a concern. Just be patient with yourself.
Having a mechanical valve had also greatly impacted my sleep. There were certainly some long bouts of insomnia where I was averaging 2-4 hours of sleep for what felt like weeks. I tried many different things, but found that Trazodone 50 mg is the best solution for me. I’ve been on it for almost a year and it helps me fall asleep/stay asleep.
Something that I found useful that helped me come to grips with all of this, was to incorporate more moments of silence in my day. The times I am most aware of the sound/intensity of beating was right before I went to sleep. This is typically when most people have the least amount of distractions, so we are much more aware of our bodies. This is where mindfulness/meditation practices can really come in handy. I would find 5 or 10 minutes in different parts of the day, and just listen to my new valve. To not judge it, to not think of how quiet it used to be.. To just let it exist. To welcome the uncomfortable feelings instead of pushing them away. By finding these moments, you will become more accustomed to how things are now. Of course you will naturally adjust to these changes over time as well.

Monitoring your INR with mechanical valve:

- Yet again it wasn't until after the surgery that I fully registered that I would have to be on blood thinners (Warfarin) for the rest of my life. The idea that if I didn't take this for only a few days, that my blood could become less thin and coagulate onto my mechanical valve and kill me, continues to be a terrifying thought. But I've found relief in reminding myself that this is a widely available medication and there has not been one instance that it's been hard to refill.
-Whether you’re comfortable with them or not, you’ll be getting very used to needles. I had to get my blood drawn so many times before the surgery, several times a day after the procedure, twice a week once I got home.. until finally about 5 or 6 months after I was approved for at home testing. This finger prick method through Acelis has been great and very convenient. At this point I check it every two weeks.
-It is ok to be worried about your INR levels on a day to day basis when this all first happens. It's natural. But, it's also natural for there to be some fluctuations. Accepting this will help free up a lot of mental space.
-A bit funny to think back on and it might be a bit shallow of me, but I was totally convinced that I was going to go bald from blood thinners. My hair at the time of the surgery was past my shoulders, and I felt the need to cut it all off because I was convinced it would start falling out around 6 weeks of being on Warfarin. A perfect example to not believe everything you read on the internet.
- Even with a mainly vegetarian diet I have thankfully managed to keep my INR consistent between 2 to 2.5 for months now. I take 10mg of warfarin every day, but there have been times in the past its been closer to 20mg or as low as 2mg.
-Choose the time of day that makes the most sense for you to take it. All the doctors told me I needed to continue to take it at night, since that was when it was first given to me in the hospital, but I found myself forgetting several times before bed. It was my decision to take it in the morning, and I rarely slip up now. Just make sure you notify your medical team of these changes too.

Thoughts on approaching a year:

I’ve stated this throughout this post, but so much of this process for me has been dealing with the mental health side of things. It is a traumatic experience that you’re going through. Whether that's deciding what's right for you, going through with it, or looking back a year after the fact. It does not matter what age you are, I highly encourage you to use this site and other resources to help you through it. Try to let go of any idealized views of what your “role” should be. It is not a sign of strength to hold all of these emotions inwardly. Communicate. Celebrate vulnerability. It will help you better understand yourself and bring you closer to the ones you love.
For many months I found myself wishing I could just “get back” to my old life. Though now, I don't believe that this is the best approach to embracing all that has yet to unfold for us. In any phase of life, you can never entirely recreate the past. Instead focus on the present. What is in front of you and tangible. Getting heart surgery or experiencing any big change might alter the way you must live, but there is still so much to look forward to and to be grateful for.
Thanks for taking the time to read this and thanks to anyone that provided me words of encouragement through the year on this site.
Sending love and healing to each of you.
-Tyler

Seeking cardiologist recommendations for Philadelphia?

3.5 months out from my mechanical aortic valve, graft, root replacement. In the process of balancing my medications, and I am looking to consider more opinions.

I am looking to reduce the intense "thudding" that seems very common after my specific surgery.
(listed in detail on the thread below)

The medications that I am currently on:
Morning meds: Atenolol 25mg (beta blocker), Warfarin 10mg, baby asprin
Evening meds: Trazodone 50mg (for sleep/anxiety), Verapamil 120mg (calcium blocker)

I experience bouts of dizziness from this current combo, and the potential health risks have me very concerned.

Even if you don't live in the area, it'd be great to hear your thoughts.
Thank you all so much!

Anyone have advice on post surgery acceptance?
Did anyone else have regrets afterwards or were hesitant whether you made the right decision? Besides this site, were there any support groups that you found?

Its been almost 3 months now since my surgery, and I cant quite say that I've gotten to the point yet that I can truly believe that this was the best choice for myself.

Looking back on it, I feel like I made my decision to go forward with it, because of how scared it made my family and friends. Not because I was totally sold on it myself. I've begun to doubt the information any medical professional told me regarding the severity of my situation. Something tells me that I could have waited, and is very difficult to grabble with making such a drastic change to your body that you cannot change back.

I understand that it is still early in my recovery, but I feel like I should be further along by now. From the initial surgery, to it getting infected, still being in pain, or my sternum still not being fully healed 11 weeks in... it could even be as small as accepting how loud the click is from my mechanical valve/how forceful my heart beat is now, or getting used to being on warfarin forever or other medication frustrations.

There has just been so many complications after the fact and the thought of my life just continuing to be consistent medical issues is pretty scary. There is so much that I didnt expect to happen afterwards. It feels like im moving through the stages of grieving my life as it used to be. There were even people on this site, before I got the surgery, that recommended for me to wait, and I have those things playing consistently through my thoughts that they were right.

All in all, thanks for letting me spill out some thoughts yet again on here. I cant be the only one that didnt have a perfect recovery.
Hope yall can help me find some strength and I cant freakin wait to be on the other end of this to help others through similar situations. I love a good comeback story... but im not quite there yet.

Sternal non-union post/questions.

Just had a 2 month follow up with my surgeon, and it looks like I have a new clicking in my manubrium (top portion of your sternum).

This was not present in my most recent CT two weeks ago. So something must of happened in the 6-8 week range to cause it. This was a surprise to me because I didn’t notice anything, and any “clicking”, I assumed was just the mechanical valve. But now that he told me that, I do notice a warmth near my collar bones, I am not experiencing pain in that area of my sternum but I’ve been woken up with pretty bad back pain that I think is associated with this.

I have to admit this is pretty defeating since I was hoping for an approval to begin normal exercise after the initial 8 week healing period. Also feeling guilty that I did something, whether stretching/lifting too much to cause it. I felt like I was listening to my body, but maybe I did too much.

The surgeon said that this could heal on its own in the next 2-3 months. Anyone have experience with this?
The other option being to add an additional plate. Which I don’t know how much time that’d add onto my already extended healing period.

I’m looking for more resources on how to safely stretch or function normally while trying to keep the manubrium from moving/clicking. Seems like every subtle movement makes it happen.

And considering I don’t have a follow up for another 3 months with my surgeon, I’m hoping to learns things to look out for, signs or whatever, if this needs to be addressed sooner than that.

Trying to remain positive through all these set backs.

Curious to find out about others experience with Afib after surgery? (Especially those that also got a mechanical valve.)

I am on both Atenolol and Flecainide to help keep me in normal sinus, but have still been experiencing episodes of irregular heart rhythms. I've noticed that it flairs up most, right before going to sleep. Eventually it might go away, but itll cycle in and out of a non-normal cycle quite a few times before stopping.

Of course I am keeping my cardiology team in the know, but doing personal research, its hard to determine how when it is important to seek immediate medical attention.

Any advice is always appreciated on this platform, and hope everyone is well!

Some questions on antibiotics, if anyone else had to experience this from a surgery infection... -Any tips for reducing nausea? -My surgery team has me on a course for 3 weeks. Researching each medication myself, it seems like most prescriptions are 7-10 days. Being on these for a 21 duration just has me a bit concerned of the side effects, and curious to if anyone else has dealt with anything similar? Even before these ones i'm on now, I was on others that didnt quite work for me, so technically in total, ill probably of been on antibiotics in general for almost an entire month. A reminder of the antibiotics i'm speaking of: Daptomycin through a PICC line, Levofloxacin, and Flagyl Thanks!

Afternoon, just continuing to update this community on the process of recovery, post surgery (procedure done Feb 1st, so into my 3rd week), as well as some general thoughts. This past Wednesday, I was discharged from another week long stay at Jefferson Hospital, after complications with my incision becoming infected and going into Afib several times. I began to notice changes in the second week, after being in the hospital for 7 days for the initial surgery. The incision (specifically a small oval at the top) was looking a bit red, with a more pronounced bump. I was also running a fever at night for several days at home. Random Note: I dont believe it created the infection, but using my heart pillow to cough, one of my shirt buttons lined up directly with this area at the top of the incision, which I was unaware of at the time, but it more than likely agitated it. My surgery team initially prescribed me an antibiotic in the second week (Cephalexin), as well as instructing me to paint the incision with betadine, to reduce the chance of infection. I did this for over a week, though on day 8, after showering, the incision began to discharge quite a bit. I shared pictures with my team, and they were able to set me up with a CTA scan a few days later into the week. I was told if it continued to discharge, or if I was still running a fever, to go to the ER. This was a very hard call to make, taking matters into my own hands, but I decided to brave the ER to get some quicker answers. After 5 hours and a CTA scan, they concluded that it was just topical and they let me go. This same week another issue began to arise. During a cardiologist visit, I was hoping to reduce the amount of medications I was on, and I asked if I could test being taken off the beta blocker Metoprolol. He did so, and told me just to report back in a few days. SO, this came to a head too, the morning after being discharged from the ER due to the infection, and I woke up with a very irregular heart beat (Afib) thursday morning. My heart rate was ranging from 100 to over 150 within seconds. I tried to calm myself down, but ended up needing to call an ambulance to go back to the ER to deal with this other issue. I spent almost 2 days in the ER, where they were able to normalize my heart rate. I evnetually got my own room again on the cardiac floor, and unfortunately that weekend, I went back into afib, resulting in me staying a few extra days to be monitored. I was told that regardless if I had attempted to not be on Metoprolol, that more than likely the infection would of put me in afib. So basically, the infection and the irregular heart rate were completely out of my control. After this full additional week, I was able to leave the hospital again, on quite the mixture of medications. - They have me on 3 strong antibiotics: Daptomycin through a PICC line, Levofloxacin, and Flagyl - Atenolol (similar to Metoprolol) - Flecainide to help keep my heart rate normal - Colchicine for inflammation - Warfarin as my blood thinner - Baby aspirin The antibiotics cause some nausea that lasts a few hours, but I was told from my team that its more important to be on them, then not. So for 21 days, I just gotta deal with feeling kinda crappy at certain points in the day. Besides the medications, they have the incision covered with a wound vac, that will be on for several more weeks. This whole additional experience has been taxing both physically and mentally, and recovering from the surgery in general would have been more than enough to handle. But i'm very comfortable in mentioning that talk therapy is very helpful, I have a very supportive system of family and friends, and I am doing my best to remain optimistic. Advice: -If you have a concern, do not down play it. Seems like when asked to rate certain situations from 1-10, that going with a higher number will create positive results. -Do your own research on medications/side effects/negative impacts of certain mixtures. -Stay on the medications they provide you post surgery. -Be very persistent in being in touch with your medical teams. It might feel like you're being annoying, but especially during covid, when you're mainly communicating through phone & with pictures, its very important to keep them up to date with any subtle changes. -If you are wearing button downs because it is too difficult to put on normal T-shirts, cut off the top few buttons, in order to not put negative pressure on your incision when using your Heart Pillow to cough. I hope being this detailed hopes some of you through your own experiences! Best of luck on your journeys. -T

Morning Friends <3 10 days out from my open heart surgery by Dr. Thomas Sloane Guy at Jefferson Hospital in Philadelphia on Feb 1st, and only 4 days out since being discharged this past Monday. Some questions as I begin to navigate the early days of the healing process outside of a hospital setting. -Do mechanical valves always stay this loud, or does it diminish a bit over time? Ive always been pretty thin, I understand that body frame changes how audible it can be, just surprising I suppose. -Any sleep suggestions? Well before the surgery, ive been a light sleeper and someone to sleep on my stomach. Currently on 5mg of melatonin and hyrdoxyzine hcl 25 mg that they prescribed me at the hospital, but still waking up several times a night. Normally melatonin doesnt cut it, so im going to have to find something stronger, but that I can safely use more permanently. -Anyone have experience with night sweats? Have been soaking through my sheet for 5 or 6 days. They freshly have me on antibiotics just in case its related to an illness. -Back pain is probably the most uncomfortable lingering discomfort. Nervous to lay down on the floor/unable to without putting pressure on my sternum, or I would try stretches while laying. Any helpful links, yoga videos, stretching instructions or whatever would be helpful! -How soon after your surgery were any of you able to start Cardiac Rehab? I work a very physical job, and even my initial consultations told me id be back at it by 6-8 weeks. So ive made plans for in advance to return to work by May, which would be 3 months. It wasnt until after going through my procedure that I was told that I may not qualify for rehab until a 3 month period is over, which feels contradictory. Thanks!

Hello Friends! My name is Tyler and I am a 31 year old musician/environmentalist/runner that lives in South Philadelphia, that was also recently diagnosed with a UNICUSPID aortic valve (I know, oh so rare) and a slight aneurysm of my aorta. It has certainly turned my life upside down trying to wrap my head around preparing for surgery at Jefferson Hospital on February 1st 2022 (and trying to determine if its even necessary...) so any help/ thoughts/ suggestions from this beautiful community is very much so welcome! Some backstory: At birth it was discovered that I had a murmur and I was told that I had a bicuspid valve. Since then I have gotten an annual Echo/EKG for the majority of my life. Not happy to admit it, but I got a bit lazy with the tests/appointments through my late 20's and have had some issues with insurance through the years, but thankfully was able to find a new cardiologist with the help of PA state insurance this past fall. In October I received a CT scan, Echo, and EKG, that were requested by Dr. Sheth at the Heart Center of Philadelphia. He then informed me that it was time to have my first surgery consultation because of the severity of the leak and that my aorta was over 40mm. Even if I knew that I would EVENTUALLY have to get surgery, this all came to big a surprise to me because I am still young (ish), I run almost 5 miles a day, have eaten a mainly vegetarian diet for several years, and really haven't had any symptoms as far as I know. Within the next week, I had my first consultation (and soon to be surgeon) with Dr. Thomas Sloane Guy at Jefferson Hospital. We went over the many different options, but overall concluded that he felt surgery was the best idea as a good preventive measure while I am in good health. In not wanting to make any on the spot decisions, I requested additional tests (TEE and CTA's), as well as requesting to set up a second consultation with another surgeon. In the following weeks, I was able to successfully get the tests done, but due to more insurance frustrations, it proved to be difficult to set up a second consultation. So I felt that the next best option was to at least meet with Dr. Guy again to go over the new test results. Surprisingly, it was after these additional tests that I found out that I had a Unicuspid valve and not a bicuspid. Because of this, it narrowed down my options for surgery and it was then that he doubled down on the suggestion to get the procedure done within the next few months. As of today I am scheduled to have sternotomy performed, doing aortic valve replacement (mechanical), ascending aortic replacement, and possible aortic root replacement. So, coming back to the present moment as I type all this... even with believing and feeling confident in Dr. Guy's opinion and talking to him twice, I am having my doubts whether this is the best decision for myself, especially because I never had a consultation with a second surgeon. Its been a hell of a lot of work to plan this all to be done, making sure that family and friends are informed, coordinating things with work, etc etc...but I just need to be able to make sure this is the best thing for myself. Again I dont know exactly what I need after sharing all of this. Though its felt good to type it all out and if you ended up reading all of this, I really appreciate you at least letting me share my story with all of you <3