Tyler's Photos

(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

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