Michael's Heart Valve Journal

Paul Vitale posted a note for Michael that says: Congratulations on your 4 year anniversary, I just hit mine as well! I think you and I might have been at the Cleveland Clinic at the same time. As painful as my recovery was, I am doing great now... I had the robotic MVR with Dr. Gillinov as well...
thanks for your updates Michael!

Paul V.

Chris Purvis posted a note for Michael that says: Hey Michael-

Congrats on your 4 years!

I went to Lafayette High School-graduate in 95. Used to live off of 109 and Manchester Rd. I used to work at the Pizza Hut in Ballwin it was in the Schnucks plaza back in the day on Manchester as well.

Small world..

Glad your doing well.

Lise Bowles posted a note for Michael that says: Hi Michael,
I was searching for pericarditis and your post came up. It seems we had the same surgeon, except my surgery was on August 16, 2016.
I also had robotic surgery btw, and my recovery was extremely painful, not only from the surgery but a long standing episode of pericarditis. It was so painful!
The good news is through taking colchicine and malaxicam eventually the inflammation subsided and I started to feel human again. Unfortunately my local cardiologist didn’t treat me for the pericarditis aggressively enough so I suffered longer than necessary, and he eventually sent me to a pulmonologist who stopped the malaxicam and put me on colchicine, which by itself didn’t work. I finally about five months into it made an appointment at CC in West Palm Beach, with a cardiologist there and she put me on both for three months. That worked, but it was a miserable road to get there.
I, like you had robotic, and frankly, in retrospect I wish I had just had a minimally invasive sternotomy. I still have lots of numbness in my rib cage on the right, and I cannot go to sleep on my left side or my right arm falls asleep. This has been since the surgery. I agree that the distance is a real inconvenience after surgery. I went to Dr. Gillinov too and was set on doing robotic after all the reading I had done.
Anyway, I get the impression it worked out well for you, but for me, hmmmmm.
I have just this week been hit with another bout of pericarditis, I’d been doing well for about 8 months, exercising, feeling well except for the above mentioned nerve problems, and I caught a mild cold and it triggered the pericarditis again. Grrrrrrrr!have you had a continuous problem with this? I hope it’s not going to last this time, I caught it early and immediately started the meds. Any feedback at all would be appreciated!
Thank you, Lise Bowles btw, I am now 63...

Ben Hyman posted a note for Michael that says: Hey Michael;

I read your journal and had to respond as I'm in the same boat. I'm having a robotic mitral repair on March 15th at Mayo Rochester. I chose them because they're 90 miles from home as opposed to needing to fly to a provider. Dr Joseph Dearani is doing my surgery as Rekesh Suri left to work for The Cleveland Clinic in Abu Dhabi of all places. It sounds like you had a quick and uneventful recovery. Would love to compare notes sometime so I know what to expect.

Ben Hyman

Phyllis Petersen posted a note for Michael that says: I just reread your last journal entry after seeing you comment on another post. I'm glad I did! My BP and HR have been all over the charts, even slowing me down a bit on my intervals in rehab. It's very hard to know what the new normal is and what will go back to the old normal. At least now I understand why the cardiologist doesn't seem overly concerned. Only once did it go very high (180/100) during exercise. I'm learning to bring the speed down more on the treadmill when the HR doesn't seem to be adjusting on intervals. Comments from "old-timers" on here really does make a difference to us newbies. Thanks!

Jacqueline Cook posted a note for Michael that says: Hi Michael. I spent some time reading your journey. I too have mitral valve prolapse and am considering CC as an option. I am early on in the process. I was in "watch and wait" status until June 3. I am now doing pre-op work-ups and researching hospitals / surgeons. I just wanted to introduce myself. I was wondering if I might chat with you (here on the website or by email) sometime in the future about your experience at CC, with Dr. Gillinov, and the minimally invasive approach to repairing your valve?

Jennifer Jermak posted a note for Michael that says: Michael, I just realized that you are from St. Louis. Who is your cardiologist and where did you do cardiac rehab?

Susan McFarlane posted a note for Michael that says: Michael my husband received an AVR in April (On-X valve) and has been doing really well apart from the elevated heart rate reaching 90 by the end of the day. His blood pressure is good along with good blood work results. I really do not want him back on metoprolol ... did you have any success with the electrophysiologist? Thanks so much!

Don LaPorte posted a note for Michael that says: Hi Michael,
Seem to have identical situation to you, including Dr Gilinov and CC trip, from Dallas for me. From your updates, I assist too optimistic on how quickly I can get back to work and heavier exercise. Would be interested in talking more when your back online. Hope your elevated pulse is improving for you.
Don

Vicki King posted a note for Michael that says: Thank you Michael Meyer. I replied to my original post to you but you must have missed it. I would really appreciate it. I have every confidence in my cardiologist and I'm sure she is sending me to one of the best. I've heard great things about him. I'm hoping he can do minimally invasive or robotic on me but with my lung issues due to my radiation for my Hodgkin's lymphoma in the past I'll just have to see what he thinks is best. I've researched on the internet probably more than I should have. Some of it has been very informative other not so much. I must admit I find the surgery videos very interesting. I would love any help or information you could pass along. My e-mail is mymustanggt2005@aol.com. Again thanks in advance!

Deb Ziegler posted a note for Michael that says: Hi Michael,
I had my mitral and tricuspid valves repaired by Dr. Gillinov three years ago, and I have been experiencing arrhythmias ever since. I had bad palpitations before surgery, and Dr. Gillinov warned me that the surgery may or may not relieve them. I was fine the first two months after surgery, but as soon as I got off the metropolol, I started to get the palpitations again. While they are not dangerous ( I have lots of extra and skipped atrial beats as well as some a fib runs), they do make me feel anxious whenever they occur. And they were occurring pretty much all day. I spent the first year trying to ignore them, but my cardiologist wanted me to try a low dose beta blocker, and that helped tremendously. I did not want to be on any meds, but I felt so much better that I changed my mind and have been taking a half tablet of bisoporol for the past two years. It does slow everything down (including metabolism), so that is a real down side. I do boot camp six days a week, and it is difficult to get my heart rate up there no matter how hard I work. I also gained about 10 lbs the first 3 weeks I was on it, and then it leveled off.
From what my cardiologist told me, people who have a lot of mitral regurgitation and then surgery to repair it, are likely to get arrhythmias because the electrical pathways of the heart get messed with from the regurgitation and surgery. Sometimes they go away and sometimes they do not. Mine were really bad all summer, but for the past three weeks, I've had hardly any. I keep trying to figure out what makes them better or worse, and the only things I know that make them worse are dehydration and lack of sleep. I have cut out refined sugar from my diet that past three weeks, so I'm wondering if that is making my heart more regular. Guess I'll find out as soon as I give in and eat some junk! Anyway, just thought I would pass that along. Hopefully, your heart will settle down be just fine on its own.
Godspeed and good luck!

Gary Mercer posted a note for Michael that says: Hi Michael. I am starting my pre-op testing tomorrow and meeting Dr. Gillinov on Monday. How have things been going for you. Probably rehabbing to get back in shape. Do you remember who did your heart cath?

Hi Michael,
I was wondering ... did you get checked by the surgeon before you left Cleveland?
Thanks, Susan

Eleanor R posted a note for Michael that says: Hi, Michael. I believe we had surgery the same day (July 14th). Mine was to replace the aortic valve. Like you, I am in cardiac rehab. I saw my cardiologist after the surgery, he prescribed rehab after doing a stress test in his office, and I will see him in November when he has said he will take me off Metoprolol and probably put me back onto Norvasc which I took presurgery. I hope at that time to be released for six months or a year. Congratulations on your great progress, I hope you continue well, and do limit those work hours! I am glad I am retired, although I do miss the work colleagues, even two years after retirement, but going in and having lunch with them is a good substitute for working! Keep well. Eleanor

Gary Mercer posted a note for Michael that says: Thanks for the link. I didn't know that about the lung. I am learning things everyday. Just got my packet from Cleveland clinic and they are pretty organized. Hope things continue to go well for you

Gary Mercer posted a note for Michael that says: I am meeting Dr. Gillinov Oct. 20 . When did you decide on robotic surgery?

Gary Mercer posted a note for Michael that says: Glad to hear you are doing well from surgery. I just heard that Dr. Gillinov will do my surgery Oct 22 . I haven't had my heart cath yet(something I dread) but considering the robotic method. Trying to educate myself on all alternatives

Michael,

You left me a message some days ago about an phone app that monitors the heart. I do see that they also have the app for the Android phones. I wanted to thank you again for letting me know about that. I'm looking into it and will speak with my Cardiologist about it too.

Best wishes to you and good luck with your rehab.

Karen Pineda

Mary ( Mia) posted a note for Michael that says: Michael, Congrats on starting cardiac rehab I am 3 weeks one day post op..I hoping to start cardiac rehab soon.

Keep up the great progress. Let me know how rehab goes.

Hugs from your heart sister,

Ginger (in the Land of Oz) posted a note for Michael that says: Michael,
I will be following you before too long. I am scheduled for surgery at CC on July 31. It seems close and far away at the same time.
My incredible son-in-law is from outside of Jeff City and one of my closest friends here is Wichita is from Springfield. And we have some very close family in St Joseph.
So very glad you are getting in as you clearly sound ready.
I wish you all good things and will keep you in prayer!

Julia Hsu posted a note for Michael that says: Michael,

Best wishes on your surgery & journey.

Ginger (in the Land of Oz) posted a note for Michael that says: Go for it, Michael, You have a bunch of us cheering you on. I am still waiting to hear about the when's etc. Pretty severe stenosis but no symptoms yet -- must be my stubborn, er, assertive streak!
Blessings,

Patti posted a note for Michael that says: Hi again-
I was active before surgery, ate healthy and without any pain so I did not use the services you mention. I was also very anxious about surgery and despite being a sceptic tried CC 's relaxing tapes. For me they were wonderful. I still remember the music when I feel stressed. I think it's good to prepare your body to be at its best so whatever helps is worth a try and CC is there to help.

Randy posted a note for Michael that says: Hi Mike...I had Dr. Gillinov at CCF for my severe mitral regurgitation. Amazing surgeon, hospital, and staff. Mine was done with a sternotomy. You made the right decision, a true "no brainer"! Healing went very quickly!! We stayed at the Courtyard University Circle for a couple of weeks (it's new)...the location, shuttle, and hotel service were exceptional. Don't worry, you will be taken care of masterfully at CCF and by Dr. G!

jeffo posted a note for Michael that says: Happy to hear you got an earlier date. If you have any questions about CCF please ask.

Patti posted a note for Michael that says: Great news for you!!! It's one thing to know you are on journey but better to know where you are going. You will have an organized professional caring team from the start at CC.
If you have any questions about robotic mitral valve repair at CC with Dr G feel free to ask. My repair was February 20 in blizzard like conditions. Fortunately you won't have to worry about Dr G getting stuck in the snow on your day!!

Brian Reid posted a note for Michael that says: Another option to look into is Dr. Bolling at the University of Michigan. I had my severe Mitral valve repaired on 4/16/13. He did my repair through the right side, believe it is called Thoracemy approach.
Very experienced surgeon with hitch success rate.

Your doing the right thing gathering info and sleeping on it to make informed decision. There are a lot of great surgeons out there. Best of luck in your journey. Your going through the most difficult part now, the decision process. When it's all done you will do great!

Li Huang posted a note for Michael that says: I had mitral valve repaired on 04/15/14 at Duke University Hospital by Dr. Donald Glower who is the top guy in US for minimal invasive procedure. I am very happy with the result (went back to work 3 weeks after the surgery). I highly recommend Dr. Glower. He is not only a excellent surgeon but also a great person. Good luck!

Julia Hsu posted a note for Michael that says: Michael,

You might want to check out Heart Hospital of Baylor Plano. I had Ross there on 5/15 and had a good experience. There are several doctors. I had Dr. William Ryan, who I highly recommend. I was originally scheduled for surgery on 8/4, but in early April, I developed symptoms. Dr. Ryan promptly moved my surgery date up to 5/15. Dr. Ryan is featured in this website. If you use the Surgeon Finder, you will find him.

Patti posted a note for Michael that says: I believe strongly in having confidence in your team both before and after surgery which is why I did lots of homework. I concluded that several surgeons could do a great job, narrowed down to two and decided CC could do it best. With that in mind I wanted a surgeon who had extensive valve repair experience. I was symptom free with severe regurgitation and decided the wait for Dr G was worth it. I too read the article discouraging wait and see but a talk with nurse at CC explained that a 3 month wait would have little effect in my case becuz I was symptom free. You might want to call CC and ask about the effect of a 3 month wait in YOUR case. Best of luck. This part of the journey was roughest for me becuz I felt fine and was being told I wasn't as fine as I thought.

jeffo posted a note for Michael that says: Do consider other surgeons at Cleveland. The have a team of all-stars. Had my surgery there, great place.

Clare Auten posted a note for Michael that says: I had mine done at St. Luke's. My cardiologist and surgeon are both good. I was in the operating room less than 2 weeks after meeting the surgeon because of the size of the aneurysm. I also had to have a full sternotomy because it was the aortic valve with an aneurysm so I don't know what their options for minimally invasive are. My kids are little 5,8 and 14. And we were in the middle of all those snow and ice storms so traveling was not even considered. I also know someone who used Mercy for a mitral valve but don't know the details. Good luck!

DVB posted a note for Michael that says: Hi Michael. Good idea to move ahead with repair once you get a grade of 'severe' even if asymptomatic. You are stronger for recovery and of course don't give bad things time to happen, so that's a double win. While CC and Mayo are top rated, there are other top rated centers of excellence that have near 100% success rates. Also, take a look at my journal for pre-surgery risk-reduction ideas.

Ginger (in the Land of Oz) posted a note for Michael that says: Michael,
I am impressed at all of the tests you have had done before consultations. I am planning on having what you just did as part of my first consultation.

And thanks for scoping out Cleveland! It is one of the Valve Centers I am looking at, too.

Two patients from the Heartland with hearts needing some surgical expertise.

I hope you are able to get your surgery done in a minimally invasive manner without having to wait till August if symptoms are hampering your life.

My best to you!

Suzanne Kosakowski posted a note for Michael that says: Hi Michael, had my aortic valve, aortic root and my ascending aorta replaced on May 15 at Cleveland clinic with Dr. Eric Roselli. Once I saw that place for a second opinion, there was no going anywhere else. We stayed at the international suites and it was very nice because it was a 2 room suite, convenient because they have a shuttle (although my family walked the 3 blocks everyday) and they have a special rate for patients and their families. The concierge at CC is xtremely helpful and was able to get us rooms even though I waited till the last minute thinking there would be no problem (when in fact there were conventions/graduations that week). Good Luck! Oh, and I feel great all things considered.

Carol Jackson posted a note for Michael that says: I had my surgery at Mayo- Rochester in Oct. 2013 and was very pleased with my surgeon, Dr. Kevin Greason, the wonderful Mayo team approach, the surgery and recovery. Surgeon repaired my aneurysm and was able to save my bicuspid aortic valve for another 10 years.

Clare Auten posted a note for Michael that says: Welcome to the website. I had a bicuspid aoric valve replaced and aneurysm repair on 1/9/14. I am from Ballwin too! Good luck! Ask if you have questions. Autenclare@gmail.com

Patti posted a note for Michael that says: Hi-
I was on same path and ended up at CC with Dr. Gillinov for a repair. Hilton Tudor arms is great if you choose CC- terrific accommodating staff and free shuttle to CC. Let me know if you have any questions. The pre surgery to me was the worst.

jeffo posted a note for Michael that says: I went to CCF had my ascending aortic aneurysm repaired my bicuspid aortic valve repaired. It was first rate in every respect.