Matthew's Journal

A year ago this morning I was doing my final skin cleanse before walking in a glassy-eyed stupor a few NYC blocks with my wife to my surgical appointment at Mount Sinai. I don't miss that moment, but I'm grateful beyond words for all the things that have gone well, gone better than well; and for the challenges and disappointments through which I continue to learn and grow. It feels like a new year for me... like somehow this anniversary is a rebirth... that like much of this journey through the years, is another lonely and sober moment even still, despite all the love and strength and support of my friends and family. I know you all can relate. Glad to have you all - even just knowing there are so many out there who understand, who walk that same road: all those I have never, and will never even meet; but whom I love and cherish nonetheless.

Thank you my friends
Cheers to another year!

Hey y'all.  8 months post-op and I feel great and totally back to normal like I never had surgery.  However - I'm having my third recurrence of pericarditis.  

No fevers this time, but debilitating and relentless, and difficult to sleep and move.  I've been taking it easy and can't point to anything that caused it this time (vs exercising the last times).  Have any of you, or anyone you know had struggles with this?  It's hard to diagnose and my first recurrence went unrecognized.  I'm just trying to figure out if this is a relatively normal part of the recovery process or if my cardiologist and I need to start pursuing unappealing treatments like long-term steroids.  :-(

Six months ago today I was just waking up. Everything about that surgery and how my outcomes have been so far have been better than I could have ever hoped. Life feels back to normal in most ways and I haven't had any lasting complications. The road has been very bumpy at times, bumpy enough that I'm not near as far physically as I was hoping and expecting to be, but that never stopped any of us. So thankful to God for everything he's brought us through, and so grateful for these little squirrels who have been so thorough in their efforts to challenge the strength of the sternum wires...

Has anyone here ever had about a pericarditis after surgery, or some other pericardial syndrome? This is the second time now in 6 weeks with eerily similar symptoms of fever, elevated inflammatory markers, pleuritic chest pain, left shoulder pain... All of it getting worse when I lay down at night. Last time my fever was much higher and there was some sort of viral component ultimately, but still no infectious symptoms.  My understanding is these things usually happen closer to surgery and I'm I'm 5 months out, but I still have a pericardial effusion so who knows.

Second time in the ER this weekend. 4th day of high fevers and tachycardia with no explanation. Possibly just a weird viral syndrome but they're worried about pericarditis since my pericardial effusion seems to have increased somewhat, along with elevated troponins and BNP. Just can't ever be simple, right?

Hey Y'all looking for some advice on recovery:

I'm coming up on 4 months post-op. Other than the bit of weight I gained from the otherwise wonderful sedentary time, I'm feeling good with basic life stuff and have had no complications. I've been at work now for a month and am happy that I no longer have much pain or fatigue just from the daily grind of housekeeping and working full time.

Since getting back into the routine, I started having palpitations at a pretty normal rate for where I was at pre-op. Cardiology has been aware of these changes and hasn't been concerned. A post-op echo shows everything is great and my heart is starting to remodel back to normal size already! I got the go-ahead for returning to a more normal exercise routine

For several years preop I successfully targeted a total of 150 minutes/week of moderate to high intensity cardio with HR > 160 bpm about 70% of the time. During recovery I stayed walking, but my daily routine has slipped since I've become more busy and more active as well. Last week I started trying to ramp up my exercise and was able to get a few leisurely sessions, and one where I actually broke a sweat and got my heartrate up over 160 for a pretty good amount of time. It felt great to push and I'm ready for more. But in the days that followed I had hundreds of palpitations that took a whole week to finally get back to baseline. Cardiology advised me to slow down and be more progressive, but this is where I need help.

I'm very discouraged how long the tail end of this is lasting. But of course I gather that's normal. I don't know how to be more progressive. It's hard to stay motivated to continue to work if I don't have the sense I'm gaining ground. Any tips for how I can work my way back progressively in a way where I can see consistent results and feel I'm making good effort consistently? I've found it difficult to do really ANYTHING if I can't engage with the strenuous and meaningful work that's been so important for my psychological and physical health over the last 5 years.

Picture from my last day off yesterday. Back to work this morning. I have to say I struggle to find a part of me that's excited to be back. Maybe only for what it represents, that finally for the last 2 weeks my mind and most of my body feels somewhat normal again. I truly believe going back to work and getting back into the too busy lifestyle is the next most important part of my recovery. But these 12 weeks have made me really consider what I want to do and what I want to be, and we'll see. It's wild to me just how much of our life gets turned to glass just based on the amount of time we spend doing the work we have been chosen to do. This isn't one of the best days, but I cannot forget how many worse ones have come before. If we can do that, we can do ANYTHING.

Cleared for travel!  Hard to say goodbye to all my new friends... But I can't tell you how excited I am to get home to my girls, my pup, and of course... My chair! Much love all!

Just sitting here ready for discharge tomorrow morning. All tubes removed, finally pain free without narcotics, feeling rested and comfortable. I know there will be more challenges and bad days in the months ahead, but I'm allowing myself to enjoy this moment of bliss just sitting watching football while my wife is out enjoying NYC with my brother and sister-in-law. These are the moments to hold on too, and to look forward to. We are stronger than we know!

Thank you all for your well wishes, prayers, and support. 48 hours post op and I'm finally feeling better. Had a real rough go of things but the surgery went perfectly and we were able to get the repair!!!!!!

Surgery starts in two hours. After decades of waiting and resenting this inevitably, it's hard to believe it's here. I couldn't feel more confident, but that's not to say it's all good vibes. We're ready for this and as always, I'm in God's strong hands. I appreciate all your prayers and support the last months. See you on the other side!

Hey yall!  Thanks for all your support!  For those of you that pray, please pray for these nursing negotiations in NYC.  My whole surgical date (next Wednesday) is up in the air right now.  If this strike isn't over by tomorrow, it sounds like I'll be back out in the wind.  The timing on this...

Hey y'all! 27 days until surgery and I'm trying to get planning done before Christmas. We'll be flying to NYC. I already have a VRBO and flights booked. But I'm trying to plan what to bring on the trip and what to get ready for home. I'm ready at home with a recliner and a treadmill, but I'm worried about forgetting something that will make life easier when we get there, since we'll have no way to get it. My main worry is there isn't a good chair in our VRBO, so I think I'll be propping with pillows for the 5 days they want me to stay in town after discharge. Any suggestions or lessons learned that you can offer? I need your wisdom!

January 18th I'll be making the journey with my wife to Manhattan to be under the care of Dr. El-Hamamsy at Mt. Sinai for repair of my bicuspid valve; with intent to save the Ross procedure for down the road.  This has been a long journey over most of my life and I feel one of the hardest parts if finally over.  I can honestly say this is the first time I feel optimism about that little piece of meat in my chest that has caused so much disruption.

A special THANK YOU to Mr. Dial for your quick response and to Dr. Paul Stelzer for our lovely and game-changing conversation

I'm two days out from my initial surgical consult. Any tips on assessing a surgeon? I work in hospital medicine so I know the kind of scary providers that are out there. I'm traveling two hours from home to go to University of Wisconsin (based on a second opinion 14 years ago when I was initially told I'd need surgery). I was referred to a surgeon who has only been practicing 2 years, but I know that means he's been doing it for a decade. His educational credibility is top notch (Stanford, New York Presb), but this is something that has to last me a long time.

Oof. After two decades of monitoring I was told yesterday that it's time. The surgical consult is placed. This is no longer hanging over my head... it's here. Now the story begins. I've been following this site for years. I suppose it's time to join up