Steven's Journal

I’m home!!! I was discharged yesterday after some complications unrelated to the valve. In summary my liver count was really high. I was horribly sick Sunday night. Details not needed. I can’t tell you how much Robyn’s presence and all your messages meant. Being hospitalized is hard. Being sick is hard. Recovering from a surgical procedure like this is not easy. Thank you to all of you !!! I shared that when Dr Stelzer came to my room to tell me my EKG and Echo were perfect I broke down. It’s crazy how emotional this whole process has been. Growing up being reminded all the tome you have a heart condition and can’t participate was challenging. I’m the end there’s always someone else with a worse challenge. Being told I may be “fixed” was overwhelming. I truly feel blessed by the care I received at Mount Sinai and all the clinical people that managed my care. I was blessed with support from Amerihealth NJ! I came home yesterday and walked 20 minutes around the block! Wow right ! I’m determined to do everything necessary to recover and enjoy a long life thanks to The Ross and my amazing clinical team. Thanks again to Robyn for being by my side during some very dark moments, to my family, friends and this community. Steve

It’s Robyn again. All is going great. Steve is in the ICU, awake and talking. He is weak and in pain, but that is to be expected. The doctor said the first two days after surgery are the worst and then there tends to be a dramatic improvement after that. The surgery took an unusually long time due to an extensive amount of scar tissue. But ultimately it ended beautifully. According to the operative report, the old valve was severely calcified and barely functioning. So again, we’re so thankful it’s out of there. Hard to believe he was walking around with that for so long. We are beyond grateful to Dr. Stelzer and everyone here at Mt. Sinai and looking forward to the better days ahead. Thanks again to everyone for your continued support. Steve sends his love.

Hi it’s Robyn again. I just received a call from the surgeon. The surgery went great and he is off the heart/lung machine. He should be closed up and out of surgery within the hour.

Hi everyone. Robyn here. We arrived at Mt. Sinai around 7 this morning and the people couldn’t have been nicer. We spoke with the surgeon who explained that they will be starting anesthesia around 9:30 and then the actual surgery around 11. I won’t hear anything at all until surgery is complete which should be between 3 and 5. Steve was in good spirits and we are both excited to have him fixed. Dr. Stelzer could not have instilled more confidence. This is one of three Ross procedures he is doing this week. Just another day at the office! As soon as I hear anything I will post an update. Love to all and thanks again for the outpouring of communication and support.

All, So this is my big week. Tomorrow I drive up to New York to Mount Sinai for some final testing. If all goes well I will return home Monday afternoon only to drive back Tuesday night. Robyn and I will stay at hotel near the hospital. Wed morning I’m scheduled to be at the hospital at 5:30 AM. Robyn will provide updates via this journal. As I’ve shared with several of you, learning about the Ross procedure feels like it could change my life. Having access to Dr Stelzer and El-Hamamsy feels like a gift. The ultimate gift is the love and support I get from each of you. Hoping for a great week!

I’m thinking tonight about the fact that I have one more week. Next Monday is my pre-testing then we go to NY on Tuesday to check into hotel and show time is 12/9. I’m first surgery of the day. I will say thanks 100 more times but thanks to my amazing friends and family. I’m sure each of us that is going through cardiac surgery is hopefully as blessed as I with the love and support of just special friends and family. For each person that has asked me what they can do for me, run an errand or just about anything...it all means the world to me. Robyn, my fiancé, there’s nothing she’s not done or isn’t preparing to do for me. My mother has always been there and I’m so blessed to have her telling me she’s there to help and then she cries for me! That’s my mom. My closest friends that are always there for me you know I love all you guys and would do anything for you. My cousin Scott....you all know who you are. Thank you. Back in 2012 when I was home recovering my daughter, Sammi, was 10. She asked me when I would be better so we could fight with each other again. Then we went on walks together as I built my strength back. I cherished those moments in spite of the challenges of cardiac surgery recovery. So that’s my Sat night rant. As patients, we have to accept the final outcome is just out of our control. I know my recovery depends on the love in my life and the incredible support from my business colleagues. Love and thanks to all of you for all the love you’ve given me and I feel every day. Thanks, Steve

This evening I saw a post from a guy on Facebook on a heart valve patient community in which the patient shared he was operated on 2 weeks ago by my surgeon, Dr Stelzer. He’s home and feeling great. Love seeing great news like that. Hoping I experience that type of outcome.

Getting things organized as I'm 14 days from my Ross procedure. As always, I remain so incredibly grateful for my family, friends and business associates that provide me with the support necessary to go through this process. We learn a lot about ourselves when we go through this. I did this back in 2012. You also learn a lot about your close circle and how much they mean to you. Wishing everyone in this community and in my life a happy Thanksgiving! I'm thankful for my surgery team at Mount Sinai led by Dr. Stelzer that will be performing the ROSS Procedure on me. PS - thanks to everyone in my life that now knows what the Ross procedure is and you held back from telling me you don't care!! Happy Thanksgiving and love to all.

I had my AVR sugery back in May 2012. I'm thankful every day. I check in and see so many people having this successful procedure. It's incredible and new technology is coming! Just sharing some interesting updates in the world of new technology in the pipeline. This Swiss company has polymer technology - Swiss cardiovascular device developer Novostia said today it raised $6.5 million (CHF 6.5 million) to support its novel heart valve device. The Neuchâtel-based company said that the valve, which will be designed for use as both an aortic and mitral valve replacement, is designed from the company’s proprietary high-performance biocompatible polymer. Novostia said that the design, as well as the materials that make up the valve, eliminate the need for lifelong anticoagulant medication use or future replacements as well as the elimination of clicking noises often associated with the valves. “Our technology should significantly improve the quality of life of people bearing a heart valve prosthesis, especially kids and young patients, while reducing overall healthcare costs. We appreciate the trust and support of our investors and look forward to bringing this long-awaited innovation to the patients and the physicians,” CEO Geoffroy Lapeyre said in a press release

EINDHOVEN, The Netherlands and ZURICH, November 15, 2017 /PRNewswire/ -- Xeltis, a clinical-stage medical device company pioneering a restorative approach in heart valve therapy, today announced the completion of an oversubscribed EUR45 million ($52 million) Series C financing. The funding round was led by a global strategic investor with participation from venture capital fund Ysios Capital and a number of large private investors. Existing institutional investors (LSP, Kurma Partners and VI Partners) and private investors also participated in the financing. Xeltis' heart valves enable the patient's own body to naturally restore a new heart valve through a therapeutic approach called Endogenous Tissue Restoration (ETR). With ETR, the patient's natural healing system develops tissue that pervades Xeltis' heart valve, forming a new, natural and fully functional valve within it. As ETR occurs, Xeltis implants are gradually absorbed by the body. ETR is enabled by bioabsorbable polymers based on Nobel Prize awarded science. I encourage everyone in this community to continue reading about amazing technological advances that we should all see commercialized over the next 3-5 years.

I'had my AVR in May 2012 so I'm at 5 years already! I'm doing great and remain incredibly thankful for my surgeon and the technology that fixed me. The fix, as we know is temporary but the technology continues to improve. Here's a recent update for those dealing with valve choice... Edwards Lifesciences ($EW) expects to launch a new bioprosthetic valve next year. Management has already described its Inspiris as a "game changer" that could be useful for a younger patient population. Inspiris incorporates novel bovine tissue technology, known as Resilia, that's intended to remove the major source of calcification that plagues other tissue technologies and to enable dry storage. Inspiris is surgically implanted--but in a few years Resilia could be incorporated into a transcatheter aortic valve replacement (TAVR). The technology is furthest along in aortic use--but is also in the clinic for mitral and pulmonary valve replacement. Inspiris Resilia is expected to be approved in Europe late this year and early next year in the U.S. The mitral study and the pulmonary study, which is in congenital child and young adult patients, are currently enrolling patients. "Inspiris, … I believe, is a game changer," said Edwards corporate VP of surgical heart valve therapy Bernard Zovighian at a December investor meeting. "Basically, when you're a patient, when you are about to receive a valve, you ask yourself how long it is going to last. And with the TAVR in a broader adoption, we are going to target younger and younger patients. So this question is going to be critical for us to answer and for the surgeon to answer." The company noted that about half of target patients needing this combination are under 60 years old and that they currently are confined mainly to mechanical valves. Edwards reported data on a valve featuring Resilia at the American Association for Thoracic Surgery's meeting. In a 673-patient pivotal trial, the valve showed no cases of structural valve deterioration, valve thrombosis or nonstructural valve dysfunction at one year. "The early clinical results with the new valve with Resilia tissue in this multicenter, international FDA trial are encouraging and set a high benchmark for surgical aortic valve replacement," said Dr. John Puskas, chair of cardiothoracic surgery at Mount Sinai Beth Israel and director of surgical coronary revascularization at Mount Sinai Health System, in a statement. He is the national principal investigator of the study. He continued, "The Resilia tissue has the potential to create a new class of surgical tissue valves that pre-clinical studies have shown to offer key benefits, such as significantly reduced calcification and sustained hemodynamics."

https://www.sciencedaily.com/releases/2016/01/160112091400.htm the link is to an interesting report in Science Daily about the shift in thinking of patients 40-70 years old electing bioprosthetic valve over mechanical valve.

May 14th is my 3rd year anniversary of having AVR (Bovine from Dr. Bavaria at Penn) and aneurysm repair. Several weeks post surgery I also has successful ablation to correct Supra Ventricular Tachycardia. 3 years on May 14th. I will continue to say I hated surgery but loved the outcome! It is a miracle. If you're like me I continue to track all of the amazing advancements being made in this field of aortic valve repair/replacement. My best to everyone in this community. There is such power in connectivity. Thanks, Adam Pick, for this platform.

I don't do this much but I just thought I would post a quick update. I've been reading many of the journals and it's just great to see this activity. Adam has done an amazing job with this website as you have all experienced. My surgery was in May of 2012 for an AVR/Aneurism repair. If I can share anything with you please let me know. Good luck to all of you that are waiting for your big day!

Just sharing...I received my St. Jude's Trifecta valve on May 14, 2012. Yesterday I ran a 10K charity run. My time wasn't great (11:20 mile)....I know maybe I should request my money back on the valve but I'll take it! I finished. In fact, I should be running more. Now my biggest complaint is knee pain. Life goes on!

This May 14th is going to be my one year anniversary! Less than 12 months ago I had my aortic valve replaced, had successful ablasion surgery to correct the super ventricular tachachardia that was causing my heart to suddenly race to over 200 beats per minute and I had the aneurism in my aortic valve repaired. On Monday evening I took my surgeon that performed the ablasion surgery along with several close friends out to dinner to thank them for what they did for me less than a year ago. It was a small gesture but an amazing feeling. There are so many people that reached out during my recovery to comment on this blog, dropped off food, texted to say they were thinking of me, dropped off a basket, offered to literally pay bills for me, bought food, drove my daughter to soccer practice, stopped off to my home to spend time........the list goes on. This whole thing remains a miracle. So for those that have had the procedure none of us can probably ever truly express how much the support we received from friends and family actually meant to us. If you\'re one of those friends/family...once again thank you!!!

I read fellow Heart Valve Journal member Mitch Friedman\'s update today and it reminded me to check in and offer my own update. I\'m approaching 3 months post-op on August 14th. Mitch\'s made the point in his update of using this site for not just the rah rah stuff but for sharing challenges. To my friends that have followed my progress, clearly I had my challenges the first few weeks post op. However, I continue to run almost everyday. I\'m focusing less on distance and more on time. My runs are between 25 and 45 minutes each day. If I don\'t run I\'m on a machine. Starting a couple of days ago, I\'m working to do push-ups again. I\'ve waited for my sternum to heal completely and since I\'m approaching the 3 month point it\'s time for some push ups! Time also to go for a swim!! My daughter started her Aikido class recently and it\'s likely I will find time to get back to that training. I can\'t wait! We all know, for those of us that chose a tissue valve, we\'re going to need another procedure in the future. I\'m down to taking asprin! No meds!!! Once again, and as always, good luck to all of you entering this process. The fact is you\'re almost certainly going to do great! If you\'ve got an ounce of compassion and human spirit in your newly repaired heart you will have moments almost everyday where you\'ll have to remind yourself to not forget to be more thankful than ever. Enjoy the rest of the summer, go for a run, help someone that needs it or my 10 year old daughter will kick your ass! Steve

I\'m coming up on 2 months post-op. July 14th is 2 months. It\'s all amazing - it just is. One thing for those that elected for the tissue valve is I was told to avoid Enriched Calcium. You\'ll frequently find this in orange juice or products like TUMS. Natural calcium found in products like yogurt and milk seems to be fine. It seems this type of calcium can wear out your valve earlier. To be clear, I\'m not a doctor but I have spoken to many of them and don\'t even want to play one on tv! I just wanted to share this and encourage you to speak to your surgeon or cardiologist (and not me!). Just sharing. Be well!!!!! I seriously do welcome your thoughts. Steve

This was an incredible week/weekend just because I have clearly moved to another level of recovery. My resting heart rate is FINALLY down in the 70\'s. That is so big to me. I didn\'t push it today but Sammi joined me for another 2 mile neighborhood walk. This time we took some of the hillier streets and I felt great. I loved walking with her. This evening I DROVE and I took Sammi out for Japanese food. I know...easy on the soy. We always had a great connection but there is something about going through this whole thing that allows conversation to seem more genuine, direct and real. Sammi and I had the BEST dinner convesation and we just talked about so many things. It was awesome. Ok...going to the office tomorrow for a half a day. Again, to my friends going in for surgery in the morning do your best to attack this process and manage expectations. If you\'re on this site you have done your homework and you\'re ready. Get fixed. Thanks Steve

Just sharing another BRIEF update.... I walked 2 miles this morning and felt great. I didn\'t want to push it too much today. Maybe 3 miles tomorrow. Good luck to everyone going in for surgery tomorrow morning! Enjoy the weekend! Steve

A little update...I promise. Just sharing I walked 1.5 miles earlier today and since it\'s so nice out will probably do a little more walking this eveing. PS...several naps have been required to maintain this blistering pace! Thanks! Steve AVR - 5/14/12

I\'ve had a great week and just wanted to share a few updates. You\'ve come to learn I\'m a bit wordy.... 1. Earlier this week I went from just walking down my street a few houses either direction to walking 1/2 mile! It was a great feeling and sense I\'ve turned the corner. 2. I went to the cardiologist and he said I couldn\'t be healing better! My resting heart rate is still a little high so he put me on some low dose meds but the feeling is this will correct itself fairly quickly. I\'ll take that. 3. My echo cardiogram shows the valve looks strong and all clinical indicators show my heart stronger than it\'s probably been in 25 years. It\'s crazy! Now I just have to build my energy and conditioning back. 4. I can return to work starting on Monday. He said I should just put in maybe 4 hours per day for a week then rest. I can also start driving again next week. My sternum looks very strong and healing looks great. I still have to see the surgeon later this month and hope that goes well then see the electrophysiologist doctor regarding the ablasion surgery I had. That seems great too. This has been a ride! It\'s a strange thing to hear people say they\'re \"praying for me\" or \"you\'re in my prayers\". Not since my wedding have I heard that so many times (sorry Shari...I had to!...just kidding) I realized it\'s hard for people to communicate their feelings. At the core, I knew how many people were really concerned but also really cared. This is a life changer on so many levels. I will continue to provide updates as I know what it was like back in March/April as I was getting ready and preparing for a May 14th open heart surgery/valve replacement and aneurism repair. Life changed fast back then but it was so helpful to hear from the people that were a few months ahead of me on their progress. For those of you reading this getting ready for your surgery please feel free to contact me. Im still in recovery mode but I do feel like this has been a miracle ride in so many ways and now its time to work hard and get the rest of my life going again. My daughter said to me the other day, \"Dad, when can we have fun again?\" It\'s time to get back to fun with Sammi. It\'s also time to get back to work! I\'ll be keeping my eye on technology and hope to see great advancements in the new valves and the non-invasive implantation process. It\'s coming. Again, thanks to all of you! Thanks for EVERY meal dropped off, text/phone call...etc. You know how thankful I am. And for those that live in my region I hope to see you on the dance floor at The Calling All Angels gala to benefit the CARES Institute on October 18th at our annual gala. What a ride! Thanks Steve

For those that think some of my other updates have been a little long, you might as well delete now and save your complaints! In very brief review, on May 14th I had the very successful repair of an aortic aneurism and replacement of my aortic valve (tissue thank you!). Success! I was literally walking the night of my procedure and out of ICU in a day. I went in on Monday and was out of Friday. It was a success. However, a month or more prior to surgery I had the very uncomfortable experience of having Supraventricular tachycardia (SVT). WebMD explains it like this \"During an episode of SVT, the heart’s electrical system doesn\'t work right, causing the heart to beat very fast. The heart beats at least 100 beats per minute and may reach 300 beats per minute. After treatment or on its own, the heart usually returns to a normal rate of 60 to 100 beats a minute. SVT may start and end quickly, and you may not have symptoms. SVT becomes a problem when it happens often, lasts a long time, or causes symptoms.\" In my case, my SVT started quickly but it didn\'t end. I had several instances where my heart reached 230 bpm and stayed there for close to an hour. So the decision was made to operate on me to do the valve and then we were going to address the SVT, if necessary, several months later. My surgeon thought given successful valve replacement, in time, the SVT might go away. Well it didn\'t (not mad at my surgeon) and it was horrible having a new valve replacement and an SVT event with my heart racing at 230 bpm. So last Tuesday I went to the hospital via ambulance ride at 4:30 am to break an SVT that suddenly started at 4 in the morning. I returned home only to have a second event at noon and back in the ambulance. No clincial way to describe this other than it sucked! It\'s scary, depressing and did I say it sucked? I decided it was time to go back to the hospital. I was back at Penn for medication adjustments. I was scared the new valve may have been damaged. I stayed a few days and they were going to discharge me. I began working with this AMAZING doctor called an electrophysiologist. In my case, his name is Dr. Frankel at U of Penn and he\'s incredible. He felt I needed a procedure called an ablasion (look it up if you want). It essentially maps the electrical system in your heart, identifies the source of bad beats and then then literally burn those sites with an electric charge. My surgeon was concerned it was too soon to do this. Last Thursday as my buddy Anthony Calzaretto was in my hospital room talking to the doctor and I and getting ready to drive me home my heart slipped into another SVT. It was scary. The decision was made I had to have the ablasion surgery. So this past Tuesday I had SUCCESSFUL ablasion surgery (I hope!) and was discharged from the hospital yesterday. That\'s my story and I\'m sticking to it! Now the mush factor.....for those patients waiting for this surgery it truly is incredibly successful! It is. My issue was unique and shouldn\'t scare you. What I can say is we can be fixed and that is a miracle. What is also a miracle is great friends and family. Trust me. Laying in a hospital bed getting poked, probed, etc isn\'t fun. Hoping your 5 hour surgery to replace you bad valve wasn\'t ruined by an SVT is a whole other level of concern. I know this is a long blog but let me try to end with this. There are moments in this whole process that you cry like an infant. It just happens. Then there are the moments when texts, calls, emails all come in from my miracle family and friends constantly checking on me and trying to make me feel good arrive. Friends visited to just watch a game, bring me a meal or make fun of me (my closest friends!). When all is said and done the medical process is a miracle but so are my close friendships and circle of family. The miracle is the close friends that make sure my daughter makes it to soccer practice safely while all this is going on and my employer that works with me to allow this to all happen. I\'m home, I couldn\'t be happier and I\'m told I\'m healthier than I\'ve been in the last 15 years. I\'m recovering in my house and looking to heal fast. This process changes your life in every way. It\'s all positive (eventually) and truly a miracle. Thanks to all of you. Love, Steve

A week ago I was in the hospital. The last few days home have been great. It\'s so nice to be home. The weather here was beautiful and I took advantage by going for a few nice short walks. Coughing is still really tough, the chest scar looks good and I\'m dealing with the interesting occasional chest pressure or strong heart beats that are part of healing (I hope!). My buddy Dave brought me lunch today (thank you Dave!), Sam and Bonnie have offered to feed me for the month and others keep pouring in to feed me. Thank you everyone. The food thing really is so helpful. My mom\'s back over to stay the evening and that is so nice. Taking steps has not been a problem. Opening up pill vials has been a challenge for my painful sternum. All else is well. Thank you everyone! The journey continues.... Love, Steve

Alex, you did the perfect job. Thank you! My friends and family all said the postings on this website kept everyone appropriately updated and I can\'t thank you enough. It\'s day 1 back home. I just returned from my first walk down the street and back. I am feeling it but continue to feel so blessed for the technology that fixed me and for all of you. You can\'t possibly imagine the impact it makes getting your voice messages, texts or the few that were able to visit me. Kenny, thanks for entertaining my parents for hours while they took me in for surgery. As a parent, I can\'t imagine what my parents felt when they wheeled me away. I know what they heard and that was Kenny and I trying to negotiate a reduced co-pay in exchange for my willingness to participate in some research study at Penn. Some how we found a way to all laugh and have fun. My mom has been a rock. She has appropriately crumbled at times but thats what this process does to everyone. Adam Pick, the founder of this website, thanks for your message to me. That was unexpected. You have created something that positively impacts so many lives. Well done and thank you. Let me know if I can help you in any way execute your vision for using this online platform to help patients and their families. So for night 1, my parents slept over. Sammi came by with Shari and we all spent good time. Sammi told me her teacher and some kids have asked about me everyday at school. That\'s so nice. I know Sammi was scared to see me. Frankly, I\'m a little scary! She\'s done great. Thanks to Amin, Nicole and the whole Barons family for making sure Sammi didn\'t miss a beat. You guys are incredible and I\'m so thankful we are part of that soccer family. It\'s truly a gift. To all of you guys in the Barons Family, you bring a smile to Sammi\'s face all the time and I\'m so thankful for all of you. We\'re equally blessed to have made some special friends from our days in Voorhees Soccer. I cherish all of you guys and can\'t thank you enough for your messages and generous offers to stop over and feed me! As for surgery, I have to say I hated it. Really I did. I wish I could be another person saying no big deal. I\'ve read so many udpates from everyone about the wait being the worst part. For those coming into this process, we are truly lucky! We are lucky but my gosh this is major surgery and it\'s not a visit to the Four Seasons. Surgery is a traumatic event and there is no reason to think we all wont have positive outcomes. You should have that outlook. I did. The folks at Dr. Bavaria\'s office encouraged me to eat a lot of protein. My dear friend and chiropractor Anthony encouraged me to \"train for surgery\" and I did. I just wanted out of that hospital in the worst way. My clinical team was literally warm, supportive, brilliant and the best i could hope for. I would have loved, for example, the ability to just open a window and breath fresh air. I\'m so happy to be home. I have a nurse coming today to check on me, I\'ve taken my meds and I\'m committed to eating great food. I\'m also committed to getting into great shape and making exercise a major part of who I am. I\"m committed to becoming healthier than ever before and making the most of this gift. Going through this process makes me appreciate how great my life is. People often say that but in my case it really is true. I love my career, I have an incredible child, my ex-wife and I get along well, my parents are around to help me, my family has just jumped up and been so supportive (Elise (love you!), Mike, Scott, Uncle Fuzzy, Uncle George, my brother, my parents..all of you). My extended family like Sam, Bonnie and to my career family (everyone at KEH)....thanks to all of you!!!!!!! Thanks to Jules and the friends I have made at The Tech Leaders of the Delaware Valley. I love you guys!!! Thanks Anthony Mongeluzzo for being a great friend! Thanks for stepping up and making sure things ran smoothly. To share, we are a group of, primarily, CEOs of Tech companies in the region. They got me dinner for the WEEK delivered from The Vienese Cafe in Cherry Hill. I just thought that was incredible. Thanks MaryAnnat The Vienese Cafe and to all of my friends in The Tech Leaders of the Delaware Valley. Yesterday I was laying on the table in the hospital as they were starting to remove sutures and wires from my chest. I looked over and Mike Sherman just popped in to say hello. I had this huge basket next to me that had just been delivered from my friends at Volpe and Koenig. Kenny was on his way over with my Chick Fillet request. That was a day in my life dealing with recovery. I will continue to stay active on this site and hope to help others that are dealing with their heart valve surgery. We can all do a better job making a difference during our journey. To my friends that have joined me in creating the Calling All Angels gala to help the children treated at The CARES Institute...you guys warm my repaired heart. Thank you Mike, Shawn, Matt, Larry, Tracy, Christine, Lisa, Jenny and everyone that is determined to make Oct 18th an incredible celebration so more children can be treated. So thank you. With a smile on my face and happy tears in my eyes I say thanks to all of you. Let the recovery begin!!!! Love to all. Steve

Steve called me at 6 am this morning. Provoking me to threaten to pull the plug on him...someone buy him a watch..he sounds much better then yesterday, much stronger