Steven's Heart Valve Journal

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 got home earlier this afternoon. I'm officially fired from my posting job.

Steves heading home today!

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

Steves doing good but feeling wiped out. It's expected, all good but tough stuff

Probably going to be a hard day for Steve, his first day of rehab. Since he's been through a lot, the work they put him through will be tough. More to follow

So I saw Steve today, he looks great. Moved to step down unit from ICU, day early if you can believe that. More progress, hope he's home in few days

Steve's up and walking, sounds great... On his way to recovery.

And it is.... A good morning. Overnight doctors took the breathing tube out...bad move as he's now talking..lol and talking and talking. Anyways expect to have him up and walking soon. More to come. By the way Steve said he will improve quicker if he gets lots of business referrals.

Steves resting quietly, expected to take his first steps in the early morning. He did wake briefly to move his hands and feet, protocol in these surgerys. Then they sedated him so he can rest. The surgeon hasn't been in yet, seems he's still in another surgery, but no news is good news... More later

Steves out of surgery. In ICU resting... Great news more to come

Still in surgery, expect to have another update around 1-2 pm.

Just got word, surgery started at 9 am...keep u posted

Fast update 715 am Steve was just taken down for surgery. Great mood ready to go....to be continued

Saw Steve last night...in great spirits, ready to get this behind him. By now he's at the hospital being prepped. When I know the actual time of surgery I will share it.

Hi, This is Alex Dergalis. I will be keeping you updated the next week, until Steve is ready to fire me. I have spoken to many of you, and will be available by cell if you want to talk 609-332-1062. From everyone a heart felt Best wishes to Steve...updates tomorrow.

The hospital called today....I have to be at the hospital to check in on Monday (5/14) at 5:30 am. I guess it's show time.

Count down is on....

This weekend my daughter has several soccer games. It should be great!

I'm packing on Sunday and it's off to surgery on Monday.

For those on the "other side" and fixed, can you offer some suggestions on what I should make sure to bring to the hospital?

Thanks,
Steve

I was talking to my friend Dan this morning and he said he read my journal here but still couldn't figure out what I've decided. Tissue or Mechanical.
I've decided to go tissue. As my valve journal friend, Mitch, said to me a couple of months ago I finally do feel good about this decision. I'm past feeling like those that went mechanical don't know what I know. I finally realize and accept the perfect answer doesn't exist. For those of us faced with this situation, we've been living with bad hardware for a while and it's literally a miracle these doctors can do what they do to fix us. Life is full of risk. Not doing this surgery will nearly guarantee me a very bad ending and soon. Opting for the tissue valve almost guarantees that I'll need this valve replaced in the future. However, it should buy me, I'm betting on, 10-15 + years of improved quality of life. It also puts me in the game of participating in future advancements in surgical procedures for replacing bad valves. Technology is amazing and moving fast.

For those that have chosen mechanical, I get it. My cardiologist said I should go with the mechanical valve but my surgeon said, if it were him, he'd go tissue. Go figure! I only wish everyone, the ones that chose mechanical and those of us that have gone tissue, a very long and healthy life. What I know I have gotten out of this is an even greater appreciation for my closest friends and family. More on that in a few days.
.

To my Valve Friend Mitch...thank you. Thanks for sharing your experience with me as your journey is a few months ahead of me. You've been kind enough to share your lessons learned and experiences to make mine more tolerable. For sharing your personal email and phone number and for making yourself available I"m am so grateful. TO Shawn, Linda, BIll, Jimmy, Chuck, Jeff and so many others on this site that offered feedback...you know how grateful I am.

OK...Tissue it is....

Oh and thanks Kaydon (aka - Speedo) for your very kind and generous perspective on all of this.

A few more days, and we get fixed.

Steve

To my HVJ friends that are now on the other side...
Can you give some feedback on the first week back from the hospital? What should I expect as far as the amount of assitance I will need at home, food, etc.

I have an AMAZING group of friends and family that continue to offer me help. To you guys, again, thank you!!! I just don't know really what to ask for.

Any feedback would be helpful.

Thanks,
Steve

A final week week to go in this waiting game. I know l have a few more messages to post this week but ...

Thanks to all of my amazing close friends and colleagues for your messages and support. I've been absolutely touched by the messages and voice mails I've received. It really means so much. Some people have said if they were dealing with this they wouldn't really talk about it. That's not me. Like so many of you on this website we're blessed to live at a time where we can be fixed. The perfect fix, I supposed, still doesn't exist but we're getting close. If you're reading this and part of the genius community working on the perfect solution please stop reading this and get back to work!

I don't want to talk about the worse scenario so let's not go there. Thanks to everyone in this this online heart valve journal community. As I call you to my close friends, you are my "valve friends". We've never met but we share a connection. It's one I'm sure we'd all prefer to not share but at the same time it's a special one. I'm grateful for it. Thanks Adam Pick, if you read these, for creating this platform.

Ok...I'll allow myself to get distracted by work for another week! I guess I'll have a few more messages next weekend.

My friend Alex has agreed to be the person that will post updates from the hospital on the 14th. Thank you Alex. Alex, please check for spelling before posting any messages. Don't embarass me to my valve friends!

Thanks to all of you. One week to go. I'll start my pre-procedure meds this week, book the hotel room for Sunday night and we go.

Sincerely (I've never meant that more),

Steve

So one of the things in my life I"m most proud of is a gala I created, along with some great friends, to bring attention to an organization that treats abused children. The gala, we call it The Calling All Angels gala, has become a huge success. Part of the winning part of the event is our auction. Earlier today one of my hysterical friends suggested we auction off my damaged valve to raise money! So funny!

I hope everyone is doing well either getting ready for your repair or healing from your big day!

Steve

I know....mechanical v tissue. My age sucks for this questions. I"m 45. In not 65 and I'm not 25.
My cardiologist still says mechanical. My surgeon said he'd go tissue if he were me but his partner would still go mechanical. There are great articles that say there is clearly movement towards biologic in the younger patient. Then there's the study that says...mechanical still wins!
When I think I'm done and my decision is made...I read another article. I'm just glad I don't need a cardiologist to help me pick a paint color for my bedroom.

I'm in my final four weeks (May 14th) prior to surgery. I feel like I've done everything I can do other than lose that final 10 lbs. I'm actually down weight and I'm walking on a fairly regular basis. I'm getting ready to make the mechancial v tissue decision and feeling better about that too.
I was at my daughters soccer game over the weekend screaming at some referee (as any moronic parent does) and I suddenly thought to myself...I'm having open heart surgery in 4 weeks. The thought really distracted me but then I went back to yelling at the ref! Life.

Well I don't know what else I should be doing other than I think I'm ready and want to get this done already. I've been telling people about the procedure. Most are shocked and a bunch seem to feel sorry for me. I guess I feel sorry for myself at times too but then you really have to embrace where we are today with technology. I just can't believe when they say we can be "fixed".

Thanks again, in particular, to those of you that are "on the other side" and continue to let us know how you're doing. That is just so helpful.

Thanks -
Steve

Yesterday was my day to meet with the surgeon I'm going to use. I met with 2 others. I loved the guy. It seems so important to have some sort of connection with the person that is going to perform this surgery. Right?

It's just becomes so clear all the time. This is a process. I guess a journey. I seem to read the same things over and over. Some how I find new meaning in some study about a valve that I didn't pick up on the last time I read the study. Someone makes a comment on this site or another and a light goes off in my head.

Yesterday, meeting with my surgeon gave me a whole different outlook. It was a great feeling. Of course I have my moments but I continue to feel more positive about all of this. I hope that feeling stays but it's the best feeling.

May 14th is the day.

Thanks -

Steve

I just read Linda's update and it reminded me I don't own a reclining chair in my home.

For those that have recently recoverd from surgery, should I pick up a reclining chair? Clearly, what ever I can do to make recovery more comfortable I want to do.

As always, I welcome your feedback.

Thanks,
Steve

I'm still 1 1/2 months out from my surgery date (most likely). I have a 10 year old daughter and we have a great relationship. I've done what I've read others suggest and that is she knows my heart valve is going to be fixed. I've been very open with her and have tried to be very factual, within reason, and optimistic.

I can't help but think about the possible risks of this procedure and wonder do you ever have that very emotional discussion about what if things don't go well? My instict says no. That's way too much to put on a child and probably not a good idea. Perhaps it's all just very personal and we each handle it our own way.

I've read some of your comments about "The Cry" and I get that. My family and I have been extremely open about things and I think we all have a great attitude about this. So much of that comes from the input I've received from this site so once again thank you!

I welcome any of your thoughts on this -

Steve

My daughter Sammi and me!

Does anyone have an objective reference for mechanical valve comparison? I hope this doesn't offend anyone but there seems to almost be an On-x cult out there and I just want to read something objective.

For anyone that recently elected a mechanical valve can you share why you ignored the On-x excitement?

Thanks!
Steve

I met with a second surgeon yesterday (I've planned on meeting 3). I hated the first one for his personality. My close friend reminded me I'm not hiring a warm personality I'm trying to find a genius to treat my leaky valve. I want both!

I met with a second surgeon yesterday and he seemed great. However, he mentioned that what he uniquely does is keep blood flow from the heart to the brain through the whole surgery. Has anyone heard of this technique? I realize after this the simple question is how does it matter if the heart is stopped but I just didn't think of that obvious question. My good friend reminded me, yet again, that I'm not hiring the most likable surgeon I should be finding the one with the most procedures and the best track record.
Finally, have any of you ever asked a surgeon how many procedures (valve and aortic repair/replace) and they didn't have an answer? This surgeon was so impressive along the the Chair of CardioThorasic Surgery title, U of Penn Med School and Wharton MBA and and and kind of person. Simply impressive. I was just really surprised when he couldn't tell me the number he does/year.

As always, I welcome any of your thoughts -
Thanks,
Steve

The process continues.
I spoke to the coordinator at Hospital of U of Penn this morning. The surgeon I'm most likely to use has a really tight schedule with a few openings. I booked May 14th.

With that said, I have an appointment with another surgeon at another hospital in the morning. He happens to have trained with the surgeon I'm scheduled with but is about 20 years younger. For those following along at home and reading my updates, of course I'm seeking a healthy conversation with a surgeon that will be engaging and really help me with this whole tissue/mechanical debate.

Oh and also I learned my aortic root is in good shape so I don't need it done. I'm not sure if this is significant but it seemed like decent news.

Thanks,
Steve

I had my first meeting with a surgeon today at U of Pennsylvania (HUP). HUP was great with the whole intake process. I first met with a Nurse Practitioner that really runs the department. She was awesome. She reviewed my chart with me talked about the whole cardiology practice at HUP and the valve replacements they do. She was so nice. I of course asked her given my age what would she do. She responded by saying she is 51 years old , I'm 45, and said if it was up to her she would get the biologic valve. She said when you weigh the risks of surgery agains the risks of blood thinner etc....biologic. I was really happy with that.

Then I met the surgeon. He said, if it was him, he would go mechanical. Why risk knowing I will have to be operated on again.

I'm not seeking the answer from anyone online here. I'm just venting and really frustrated.

Due to the fact that I'm going to also need my aorta done I'm meeting with a surgeon that is consider tops in the field with that procedure and I'll consult with him.

My surgery is likely to be scheduled for May.

Steve

So the last several nights I've gone to bed and felt some chest tightness and general discomfort. I kept telling myself that I've had every test in the world and, other than my bicuspid valve, all is good. I'm not a big medicine guy but my girlfriend encouraged me to take a 1/2 of a Clonapam. I had a great night sleep!!!
Just sharin!

Tomorrow is my first meeting with a surgeon. Thanks again so much for this website and especially to Mitch for taking my phone calls about this process. Mitch, I know you know I appreciate it but thanks again!

To all of you....be healthy! This community is amazing.
Steve

I was speaking with a chiropractor friend of mine today. I know some people don't believe but my friend is very good. Clearly, he doesn't think a spinal adjustment can cure my valve. However, we talked about the rhythm issue and he focused on the same stuff we always hear about diet, weight loss, caffeine reduction, etc. He also talked about getting in shape for surgery. Dropping weight, relaxing, resting and just being in shape for surgery. I don't think I can go wrong doing this. I guess I'm just sharing the thought. No other reason.

On a different note, I continue to prepare for the tissue v mechanical discussion with my surgeon this week. I'm curious if anyone went against their surgeons direction and elected for tissue over mechanical or vice versa.

Thanks -
Steve

So yesterday I went to work. I was sitting at my desk and my heart suddenly started racing. This has happened to me over the past 10+ years. Of course the diagnosis has always been stress. I still never believed it.

Yesterday, by the time I got to the hospital, my pulse was 193 and I was scared. This time it had lasted about 30 minutes like this. They were able to catch it on the EKG and FINALLY they found out that unrelated to my valve I have an electrical issue TOO! Actually, I'm so happy about this because I've been concerned that post valve procedure I was still going to have these incidents of racing heart with no diagnosis. I spoke to my cardiologist from the ER. He was amazing. He assured me this was unrelated to my aortic issue and that it was a "simple fix". I guess "simple" is as compared to valve surgery but I'll take it!

So that's my little update for my Valve Journal community. Enjoy the weekend!