Tyler's Journal

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.

Blood thinner question! (specific to mechanical valve)
Anyone familiar with any Warfarin substitutes?

My cardiologist expressed that nothing else has been approved by the FDA yet with my specific valve, not sure if thats accurate. It would be so lovely someday to not deal with INR fluctuations.

Thankfully with the On-X mechanical valve, I can have a lower INR range (1.5-2), though that number has moved around quite a bit, mainly because I am a vegetarian, which has been tricky with finding the appropriate vitamin K balance.
Any other vegetarians out there with the same experience?

My INR was most recently as low as 1.2, which had me pretty concerned about clots. Also this is pretty shallow, but it seems like another likely side effect of warfarin is hair loss. Which at 31, is something i'd really prefer not to happen quite yet.

On a different note, today marks my 50th day since my Feb 1st surgery. Ive been walking over 5 miles a day and feeling much more myself. SO grateful for this progress.
Hope everyone is well <3

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