Consult completed
Journal posted on December 14, 2016
I really liked Dr Dearani. My Cat Scan showed no major blockages and said I would be a perfect candidate for a robotic aporoach. He urged me not to wait too long as the leakage is beyond severe. It's most likely a bilateral leaflet prolapse and a barlows valve. He said I have a 90% chance of a repair and 90-95% chance of it lasting 10 years or longer. Will schedule it for March 2017 and hopefully this will all be behind me soon. He said I could expect to be in the hospital 3 days and about a 3 week recovery instead of 7-8 weeks with a full sternotomy.
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Phyllis Petersen  Robotic is painful initially, but I've been progressing quickly and am glad I had the robotic.
Consult completed
Journal posted on December 14, 2016
I really liked Dr Dearani. My Cat Scan showed no major blockages and said I would be a perfect candidate for a robotic aporoach. He urged me not to wait too long as the leakage is beyond severe. It's most likely a bilateral leaflet prolapse and a barlows valve. He said I have a 90% chance of a repair and 90-95% chance of it lasting 10 years or longer. Will schedule it for March 2017 and hopefully this will all be behind me soon. He said I could expect to be in the hospital 3 days and about a 3 week recovery instead of 7-8 weeks with a full sternotomy.
CT Scan done
Journal posted on December 14, 2016
Not a big deal. The dye caused a very hot feeling but only lasted a minute. Now on for my consult
Now waiting for my ct
Journal posted on December 14, 2016
Sitting in the waiting room with a catheter iin my arm. Strange seeing other people in gurneys behind the check in desk. Lots of people here today
Leaving for Mayo Rochester for CT Angiogram and surgical con
Journal posted on December 14, 2016
My appointment starts at 12:45 with CAT Scan. This will be my first time ever having any kind of Medical test using a dye. I read the instructions and it said to avoid Caffine for 12 hours prior to the test ( no chocolate or morning green tea for me) and don't take glucophage (fortunately I don't have diabetes). Hopefully this won't be a big deal and it will go quickly. I then meet with Dr Dearani for a consult and see if I'm a candidate for a robotic approach. I have a list of about 30 questions I want to ask him, and I may even ask for a tour prior to surgery. I'm hoping I can wait a few months as I'm still asymptomatic and even had a fairly intense Kettlebell session last night without any issues. (It still feels countetintuitive to be looking at major surgery while still feeling well)

Has anyone else had mitral valve surgery at Mayo with this surgeon? What questions did you ask to help you feel at ease with your decision on timing and where to have it done? Sorry for the long post. I tend to get "verbose" in these journals as it helps me relax and get my mind focus. One of our other members has been posting video blogs on her journey through her heart valve repair (thank you Stephanie Jones!) and I may do the same.
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Phyllis Petersen  I had started writing up my experience before I forgot, but then slacked off. Memory is fading quickl ... Read more
Pending CT Angiogram
Journal posted on December 1, 2016
I'm scheduled for a CT Angiogram and surgical consult at Mayo on the 14th. I've heard that these are not a big deal but I've never had a test using contrast before. Can someone who's had one recently let me know what to expect?
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Darlene Smith  The test is very quick, just a few minutes. The machine will give you directions on when to hold you ... Read more
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Bob Brehm  Keep your legs and toes warm as that was the worst part for me - you know popsicle toes!. The test w ... Read more
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Terry Shermeister   It's a piece of cake!! Your surgeon will make you feel confident and you are having your procedure a ... Read more
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Phyllis Petersen  Good description Darlene! I had contrast with CT and MRI at home and a more extensive CTA at Clevelan ... Read more
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Cathleen Weed  The tech talks to you via a speaker during the scan and will let you know when they are pushing the c ... Read more
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Ben Hyman  You were all right on with your descriptions. The test was a "piece of cake". The worst part was wa ... Read more
Feeling a bit "off" today
Journal posted on November 9, 2016
I'm just getting over a 3 day cold that kept me home. As the time gets closer to my impending OHS, I'm sure I'll get more anxious. I also had a strenuous Kettkebell workout last night which may have drained me a bit.

I'm just wondering what range of emotions people went through leading up to surgery day. How did it make you feel and how did you deal with it? I'm feeling "off" and unfocused and not sure if that's anxiety or something else
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Phyllis Petersen  It was one long rollercoaster ride. I did guided imagery, had a couple of massages, went out and enjo ... Read more
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Darlene Smith  Ben, I was pretty centered and relaxed leading up to surgery, but the day before, I had about an hour ... Read more
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Terry Shermeister   Hi Ben: Everyone deals with this in their own manner. There are different points. When I was first ... Read more
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Robert D'Aurora  Through out the the process, I was scared and anxious. My cardiologist recommended Dr Gillinov,I rese ... Read more
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Rita Savelis  Whatever you are feeling is normal, faced with this experience.
Most go through a range of emotions. ... Read more
Feeling a bit "off" today
Journal posted on November 9, 2016
I'm just getting over a 3 day cold that kept me home. As the time gets closer to my impending OHS, I'm sure I'll get more anxious. I also had a strenuous Kettkebell workout last night which may have drained me a bit.

I'm just wondering what range of emotions people went through leading up to surgery day. How did it make you feel and how did you deal with it? I'm feeling "off" and unfocused and not sure if that's anxiety or something else
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Anna Jones  I'm not at that point yet, but it is understandable to be feeling anxious and unfocused. Wishing you ... Read more
Next appointment at Mayo scheduled
Journal posted on November 7, 2016
I have a CT Scan and a surgical consult scheduled at Mayo St Mary's Hospital in Rochester on December 14th with Dr. Joseph Dearani. He's supposed to be one of the best.

The Cardiologist that I met with believes we're dealing with a Barlow's valve, which I've learned from my web research can be more surgically complex than your typical Mitral valve leak. Has anyone else had a Barlow's valve repaired at Mayo or at another institution? I'm curios to learn if the repair lasted or if you had other complications that I should ask about during my consult
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Phyllis Petersen  Do you have calcification of the valve? I had a floppy posterior leaflet (annuloplasty ring) with som ... Read more
Still processing my pending OHS
Journal posted on November 3, 2016
Taking a day off due to a sore throat. Also need a day of self time to process my pending OHS ordeal to come. I still feel great with no breathing issues or any problems with intense workouts. Yet my test results show (in the Cardiologist's words) "torrential" regurgitation. The diagnosticians in the Echo dept sure took a keen interest in my results as they took extra measurements just to be sure they were reading them correctly. I'll probably shoot for surgery in February. My birthdayis on Valentine's day. Would't it be strange to schedule this on my 60th birthday?! I need to vent on this so my apologies if I sound like a whiner or go too long on this. Many people on this site have gone through this successfully, and I'm confident that I couldn't be in better hands at Mayo. Everyone has their own way of dealing with this, and journaling on this is mine. Looking forward to comparing notes, experiences and scars with others ob this site
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Rita Savelis  There is no problem at all, Ben, with venting or "whining". It isn't whining, it is expressing what y ... Read more
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jerry grimes  Welcome to the site, Ben. Had to chuckle at the "torrential" level of regurg diagnosis. Makes you wan ... Read more
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Terry Shermeister   Hi Ben I hope you are well. I remember when we first began to converse nearly 2 years ago. I had no ... Read more
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Ben Hyman  Thanks Terry. Your words are very encouraging. I just hope I didn't wait too long. They saw Ventri ... Read more
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Nancy Lewis  It is suppose to go back to normal fairly quickly with rest, and exercise and meds. I'm on the other ... Read more
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Ben Hyman  Thanks Nancy,

The docs at Mayo said as long as I get it done within 6 months or less, I should be fi ... Read more
The time has finally arrived
Journal posted on November 2, 2016
I just got back from my consult at the Mayo Clinic in Rochester. They did a chest x ray, EKG, 90 minute echocardiogram and finally a face to face with one of their top cardiologists, Dr. Michelena. To make a long story short, My ERO is at 72mm (40mm is considered severe) and both my ventricles and my atrium are enlarged. He said I shouldn't go beyond 6 months to get this fixed. Fortunately my Ejection Fraction is at 78% which is good, and still asymptomatic. He said I have a 95% chance of a successful repair. I have some calcium build up behind the valve so a robotic approach may not be possible. I go in for a CAT Scan and surgical consult with Dr. Dearani in December. I'm probably going to schedule the surgery for February.

It's strange that I don't yet feel scared or anxious, just determined to have a good outcome. It may not have hit me yet.

More to come
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Phyllis Petersen  Good luck getting on with this! If you already have enlargement and some calcium build-up, you do not ... Read more
Anyone ever try Tai Chi as part of their recovery?
Journal posted on October 17, 2016
I've heard that Tai Chi has healing properties with little or no stress in the body. Has any OHS patients ever used Tai Chi after surgery as part of their recovery process? I think it might help me heal faster and keep blood moving during recovery.
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Phyllis Petersen  I've only tried it once a few years ago. I'd love to hear too if anyone has experience with it in rec ... Read more
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Ellen Leng  Tai Chi is great, but depending on your surgery (whether you have a sternal incision or not), you may ... Read more
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Terry Gillen  I am 3 months post op and my chest area along with my groin area is still very sore. All the numbness ... Read more
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Terry Shermeister   Hi Ben: Follow the Docs and nurses advice. Tai Chi is a very slow and gentle way. I've done it but ... Read more
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Ben Hyman  Thanks Terry. I have my consult at Mayo in a few weeks. I'll report on the outcome and next steps r ... Read more
Here's my newest picture!
October 12, 2016  
Me last night after heavy swing session
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Corey Sines  Looks like you are in good shape and look younger than your age! I have done alot of weight training ... Read more
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Ellen Leng  Ya look good! I looked at your journal. I'm 53, in good health, also with MVP that I was told was ben ... Read more
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Ben Hyman  Thank you Ellen. I'll ask what my ERO is during my consult. Hopefully it's not progressed where my ... Read more
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Phyllis Petersen  I love kettlebells! I can't wait to be able to do them again, but I know there's a lot of healing pos ... Read more
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Civita Fahey  I used to do a lot of kettlebells.. they were great.. , but they told me not to due to the bicuspid v ... Read more
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Ben Hyman  I believe that doing Kettlbell for the last 7 years have kept me out if the OR until now. I still ha ... Read more
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Civita Fahey  That's probably true Ben.. I've tried keeping conditioned by doing a boxing workout which I can still ... Read more
Had a great workout last night
Journal posted on October 12, 2016
Still doing my Kettlebell workouts 3 times per week despite my moderate to severe MR. Each session lasts an hour and consists of 3-4 different sets including a final heavy set of 20 swings with a 40 and 26 kilo bell every 90 seconds X 3. My HR ranges from 103 to 169 and goes below 100 after 5 minutes. Still having no symptoms so I think my heart is quite strong despite my leaking valve. I'm still going to get it taken care of and I hope I'll get wven stronger after my recovery. Hopefully I won't have too long of a delay after surgery so I can get back to Kettlebell. I may even get certified to teach a class. My consult at Mayo is 11/2. Hopefully I'll get good news and will make plans when I know more. Take that MR!
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Anna Jones  Sending best wishes for great news.
Checked my heart rate during a walk over lunch hour
Journal posted on October 3, 2016
I purchased a Garmin Vivofit HR band and am starting to track my heart rate in real time. During a 1.3 mile walk in downtown Mpls, my pulse went from 84 to a peak of 164. I wasn't even breathing hard and my heart did not feel like it was beating all that hard. That's what it gets to during a kettlebell session, not during a walk at an average pace. Either my heart is getting worse from the MR or this band is inaccurate. I sure hope it's the band and not my heart getting worse. My appt at Mayo can't come soon enough
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Phyllis Petersen  Unfortunately, it may be your valve. I always had low blood pressure until this last year. The diasto ... Read more
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Ellen Leng  Check your pulse with your finger and phone (stopwatch mode).
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Ted Miko  Do not trust band ! Many appazon phone that work better that's comparing app to excersie machine or b ... Read more
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Terry Shermeister   Hi Ben we have exchanged information during 2015. I've been following your posts and the responses f ... Read more
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Ben Hyman  Terry

Great hearing from you. I appreciate your encouragement. I did choose a provider but now they ... Read more
Consult at Mayo Clinic scheduled
Journal posted on September 30, 2016
I have a consult scheduled for November 2nd at Mayo Rochester at their valve clinic. As part of this visit, they want to do an Echo (Not a TEE) of the valves which sounds reasonable. The education packet on this said it can take over 2 hours(!) and sometimes requires a contrast agent (no thank you). The Dr. I'm meeting with is Dr. Hector Michalena.

I've been getting echos every 6 months and they usually take 15-20 minutes, and s contrast agent is never required. I know Mayo has a top notch reputation, but this seems excessive to me.

Has anyone had similar experiences at Mayo or other big centers? Or am I misinformed on what I should expect!
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Roseline Rosario  I would call the center itself and ask to speak to the imaging dept to ask them the reason. Never hea ... Read more
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Corey Sines  I had a lot of echo's (TTE and TEE), none have used contrast dye. Not even sure how an Echo would pi ... Read more
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Phyllis Petersen  Not for an echo, but I had a CT and MRI back-to-back with 2 different contrasts. That took quite awhi ... Read more
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Ben Hyman  Thank you...that's what I thought as well. I don't know why a standard echo would take over 2 hours a ... Read more
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Phyllis Petersen  Contrast is often required to get the detail of blood vessels, but you should ask why a test is being ... Read more
Lynn Johnston  I had minimally invasive robotic mitral valve repair at Mayo Clinic in Rochester, MN in June 2013. I ... Read more
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Barbara Laurie  It's very standardized paperwork you are given and it may not mean you. I doubt it will. BUT a very i ... Read more
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Ben Hyman  Lynn, who was your surgeon at Mayo? Which valve was repaired? How are you doing since your procedure? ... Read more
Lynn Johnston  Ben, Dr. Burkhart was my surgeon. He and Dr. Suri operated as a team for the robotic surgeries so th ... Read more
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Ben Hyman  Lynn,

I had a consult with a surgeon at Abbott in Minneapolis that claims they do 1 surgery per week ... Read more
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Ellen Leng  It is really unusual to have a program discuss another program or surgeon in that way. Would raise my ... Read more
Lynn Johnston  Ben, Good luck with your decision. I have nothing but good to say about Mayo and would definitely go ... Read more
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Ben Hyman  Thank you Lynn.

I'll be asking lots of questions during my visit. Fortunately I'm stillbin the driv ... Read more
Resting heart rate still in high 50's
Journal posted on September 18, 2016
Getting ready to go sailing this afternoon. Resting heart rate hovers between 58 and 61. Got it reved up to 170 during Kettlebell class pn Thursday with no ill effects. Hopefully can hold off surgery for another year or 2
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Anna Jones  I hope you can hold off on surgery too.
Resting heart rate still in high 50's
Journal posted on September 18, 2016
Getting ready to go sailing this afternoon. Resting heart rate hovers between 58 and 61. Got it reved up to 170 during Kettlebell class pn Thursday with no ill effects. Hopefully can hold off surgery for another year or 2
Status Update
Journal posted on September 14, 2016
I received a call from The Mayo Clinic in Rochester today.

About 10 days ago, I sent a request to my current hospital to send copies of my Echos to Mayo for a consult. They are apparently very interested in having me look at their robotic procedure. I scheduled a meeting for 11/2.

I'm looking at them because they're ranked #2 behind Cleveland Clinic. Abbott Northwestern (my current hospital) is ranked about 30th. They are also part of Allina which is going through a contenscious nursing strike. My concerns about Mayo is that they are 90 miles away and my current surgeon tells me that they operate on one patient per week who had a robotic repair from Mayo that did't last (is that possible?)

Has anyone else had a Mitral Repair done at Mayo? What advice would you give me about exploring Mayo's program?
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Phyllis Petersen  It doesn't seem like too long a distance if you can have robotic repair. The hospital stay and recove ... Read more
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Catie B  Ben, I haven't been to Mayo, but a couple of HVS members had surgery there this summer, one shortly a ... Read more
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Steven Dean  I think the two that had surgery at Mayo this summer were at Mayo AZ not Rochester. I am an AVR guy m ... Read more
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David C  It's my understanding that Mayo is right up there with Cleveland. If you are riding in a car, 90miles ... Read more
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Steven Dean  We drove 6+ hours home from Cleveland to DC 7 days after surgery (1 day after I got out of the hospit ... Read more
Another 6 month check up
Journal posted on August 9, 2016
I'm now at Allina Heart Clinic in Mpls waiting for my 6 month echo and consult. After this, I think I'll go to Mayo in Rochester to see if I'm a candidate for a robotic repair of my Mitral Valve.

Wish me luck
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Kevin Shackelford  I just had AVR at Mayo in Phoenix. Amazing surgeons and organization! Best of luck to you in journe ... Read more
  I love Mayo as Well. I am going to try and work there I was so enamored.
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Ben Hyman  My consult went great. I have no symptoms and the MR is not yet serious enough for surgery. He said ... Read more
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Terry Shermeister   Hi Ben, hope all is well. Sounds like you are doing everything right. A little more than one year a ... Read more
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Ben Hyman  Thanks Terry. My surgeon said that the backflow jet in my valve is going towards the side of the val ... Read more
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Glen Miller  Hi Ben. Glad your surgery and recovery have gone well. I have been reading your journal after havin ... Read more
Anone with experiece at Mayo Clinic?
Journal posted on August 5, 2016
I'm looking into getting evaluated at Mayo in Rochester for my leaky Mitral valve.

Here's a link to a video on their website of a patient who had this done

http://www.mayoclinic.org/tests-procedures/minimally-invasive-heart-surgery/basics/definition/prc-20013701?mc_id=us&utm_source=facebook&utm_medium=sm&utm_content=chafos30heart&utm_campaign=mayoclinic&geo=national&placementsite=enterprise&cauid=100593

If you are able to watch it, it's pretty compelling.

Anyone ever have a robotic procedure done at Mayo that could share their experiences?
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Amy Dorsey  I just had robotic MV repair at Cleveland Clinic 2 weeks ago. I watched every video I could of every ... Read more
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Ben Hyman  Thank you Amy. I read your journal on what your post op was like and it sounds harrowing and very un ... Read more
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Tracy Simmons  Hi Ben. I had my mitral valve repaired at Mayo Rochester location in March 2016. I opted for the mi ... Read more
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Tracy Simmons  Hi Ben. I had my mitral valve repaired at Mayo Rochester location in March 2016. I opted for the mi ... Read more
6 months since my last entry
Journal posted on July 27, 2016
Going in for my 6 month check up. Surgery is still pending but my current surgeon said I can wait during my last visit. I go in every 6 months.

I have a small amount of calcium showing up on the valve that would be removed during surgery, and he would use a mini hemisternotomy rather the through the ribs which was what I had preferred.

The surgeon is highly regarded and the Minneapolis Heart Institute has an excellent reputation. However they don't have a robotics program for Mitral repair. They are rated about 30th in the nation.

I watched a video on the Mayo website about the results of their robotic procedure and it's very compelling. One patient profiled was out of the hospital in 3 days and back to work in about 2 weeks. He said post op pain was minimal. Their program is ranked #2 in the nation behind Cleveland Clinic.

My current doc is predicting 4 days in the hospital and about 4-6 weeks in recovery.

I'm considering getting a third opinion at Mayo to see if I'm a candidate for a robotic procedure. It's about 90 minutes from my home vs a 15 minute drive to the Minneapolis clinic. I would't want to drive back out to Rochester if there are complications.

Anyone else out there have this dilemma? Would love to get some insights. Is Robotic worth the additional risks? (Higher risk of stroke and other complications)

Ben
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Lise Bowles  Ben, I am flying to Cleveland from Florida for my surgery. There they have the option of robotic, min ... Read more
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Amy Dorsey  Hi Ben. I just read your story and it's very similar to mine. I am one week post op from robotic mit ... Read more
Well I'm back
Journal posted on February 22, 2016
It's been about 6 months since my last update. Back in May, I had met with my chosen surgeon at Abbott Northwestern right after my latest echo and he said that ad long as I wasn't having symptoms, I could "ride it out" for 3-6 months. I'm having my 6 month echo and consult this afternoon and I'm sitting in the waiting room of the Minneapolis Heart Institute waiting to be called for my echo. My consult is right after it's done. Wish me luck
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Barbara Laurie  Best of luck!,😉Ben
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Kate Watson  Wishing you lots of luck!
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susan kotansky  Yes..good luck!!!
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Ben Hyman  Great news today! My surgeon said ni changes since the last echo. Because of my heart conditioning f ... Read more
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susan kotansky  Great news!!!! Enjoy!!!!
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Barbara Laurie  Yeah! Great job! 🌹
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Kate Watson  Congrats, great news!
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Wanda Mroz  Good for you!
Just put in 25 miles tonight
Journal posted on August 26, 2015
Heart rate never went over 110 for a 2.5 hour ride- avge speec about 13 mph...take that MR!
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Bob M  Way to go heart brother!
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Patrick Kennedy  Nice!
Granted another reprieve...sort of
Journal posted on August 26, 2015
Well, I got some more good news today. Dr. Farivar said that despite my severe MR, my heart is functioning quite well. There's no Afib, no pulmonary hypertension, and no symptoms like SOB or lightheadedness. He said I'm in better physical condition thN many in my age bracket (thank you Kettlebell!) and a large percentage of his patients. He also said that there are lots of patients with severe MR that can go for years before surgery is indicated. My EF is 80% which means the Mitral valve is sending all the blood through properly. Based on this we can wait another 6 months unless symptoms like SOB or exercise intolerance starts to appear.

On the negative side, the latest echo shows some calcium buildup on the valve caused by some of the regurgitant blood being absorbed by the heart muscle. That means he'll needto do a mini hemi sternotomy rather than a right thomracotomy. He'll still be able to do a repair, but it's a bit more challenging. He said it's not "if" but "when" I''ll need surgery. It all deoends on when symptoms develop.

He's scheduling me for a CT angiogram in a month and another echo in 3 months. For now I can relax. I think I'll go on a bike ride before it gets too dark.

More as things develop...BFN

Ben
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Terry Shermeister   Hi Ben: It's interesting to read your journal. It's my understanding that you do not want symptoms ... Read more
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Ben Hyman  Thanks Terry...my doc said it's safe to wait and I trust his judgement. I'll "giterdone" when the ti ... Read more
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Autumn Griffin  I am glad you aren't having symptoms. It is good that you don't need surgery yet. Thank God everythin ... Read more
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Jean Raber  Ben, I'm sure your exercise and Terry's put you in the best possible place for recovery. I've been us ... Read more
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Ben Hyman  Yep...that's the plan. I'll be working out as if I'm planning to run a marathon. I'm thinking that ... Read more
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John Lyons  I went down similar path to you withe the 'marathon' taking place about 4 weeks back. We did pretty ... Read more
It's been a while
Journal posted on August 26, 2015
I haven't posted in a while because my selected surgeon said I could enjoy my summer and hold off discussing OHS until Fall. I'm now in the waiting room waiting to discuss the results of my Echo last week. I haven't felt this anxious since I was in 3rd grade and was being summoned to the Principle's office. I'll have an update shortly
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Naomi Ivker  That anxiety is the worst.
Here's my newest picture!
August 12, 2015  
Just did a 10 minute 1 arm swing series, 20 sets, 30 seconds, 9 one arm swings per set X 20 sets. My heart rate went up to 124 BPM and went back down to 67 BPM an hour after class...Take that MR!
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Bob M  Way to go heart brother!
Here's my newest picture!
August 12, 2015  
Here's my newest picture!
July 22, 2015  
Our evening workout on the whiteboard
Here's my newest picture!
July 22, 2015  
Put 4 miles on this last night... Not bad for a guy with a leaky heart valve
  Don't over-do it, Ben....and keep hydrated!
First ride of the summet
Journal posted on June 22, 2015
Just put in about 4.5 miles on my "toy" tonight...not bad for a guy with a leaky heart valve
Results of my consult
Journal posted on May 18, 2015
I met with the surgeon, Dr Farivar. It went better than I expected. My Reguritation is not quite ass severe as I thought, but should still have it repaired before the end of the year. He said that I have a 95'% chance of a successful repair with just a ring around the opening of the valve. He may not have to alter the leaflet itself. He most likely can do it through a mini thoracotomy assuming my veins are clear. And best of all, I won't need an angiogram. They use CAT scans for most of their pre-testing. I may even be able to avoid a TEE. He scheduled me for a standard Echo in mid August, and another consult right afterwards. I'll probably schedule the procedure itself for October. He said most of his patients are back to work in about 4 weeks. I feel much better about this than I did this morning.

He said "go enjoy your summer and we'll see you in 3 months"
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Tammy Pilcher  That's great news, Ben! I told you you would feel better after your meeting!:-)
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Kimberly Biddick  Great news!!
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Julie McDonald-Lundgren  That's good news! I really like Dr Farivar. He is doing my Aortic Valve Replacement in June.
  Great news! God is Good!
Have my surgical consult this afternoon
Journal posted on May 18, 2015
Meeting with my potential surgeon today at 2:00 PM. Have my list of questions prepared and printouts of all of my on line research on my condition. Even with that, it doesn't change the situation or the anxiety that I'm feeling about pending OHS. I'm hoping that I can safely delay this until Fall, but I'll follow whatever suggestions the surgeon makes. Any advice about what else to bring or critical questions I should ask would be greatly appreciated
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Tammy Pilcher  Ben, it sounds like you've got what you'll need for your meeting today. You'll probably feel alot mo ... Read more
  Praying for you, Ben.
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Ben Hyman  TY Pamela...back at ya!
  :-) Thank you, Ben!
Current update
Journal posted on May 8, 2015
I haven't posted in a while as surgery for my leaky mitral valve is not yet scheduled. I have a meeting with a surgeon at Abbott Northwestern on May 18th to go over my previous echoes and determine an appropriate treatment plan. I'm hoping I can push this out until Fall ( September/October) as there is a lot going on in my life right now that would make being laid up a huge inconvenience (when is it ever a good time to have major surgery?) Still no real symptoms (although my heart rate did seem higher than normal after walking the dog this morning) . I'm seeing my Cardiologist on Monday to go over the results of my month long halter monitoring. I don't think any AFIB was detected. I cancelled my TEE as I wanted to wait until it was getting closer to pulling the trigger. My doctor said that was perfectacly acceptable and to follow your gut.

Has anyone ever tried using Tai Chi as part of their recovery? There's a Tai Chi studio not far from work, and if I start now, I would be able to use it after my eventual surgery (I know with severe MR, it's not IF, but WHEN).

I'm also wondering if anyone has used those Massage chairs during their recovery. A good Massage chair that also functions as an auto recliner can cost over $5000. Normally you can't just rent them. There's a portable massager that can go on the back of any chair that works almost as well made by a German company called Casada that you can buy from Amazon for about. $300. I tried one at a home show and it worked so well that I didn't want to leave the chair.

Would something like this help or hinder healing and recovery?
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Wiliam Height  Any good surgeon will not let you push this out more than 3 months if your MVR is indeed severe. Tai ... Read more
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Ben Hyman  Thx William, both my Cardiologist and a very prominent doctor at Abbott thought that because my vent ... Read more
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Terry Shermeister   Hi Ben: At my pre op this last Tuesday all of my results were reviewed with me. My heart function, ... Read more
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Ben Hyman  Thanks Terry...I am seeing my Cardiologist on Monday and I'll discuss this with him as well
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Tim Goff  Ben, though I had a symptomatic event in the late fall, prior to that I was pretty much asymptomatic. ... Read more
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Dave Van Buren (DVB)  Hi Ben. Once diagnosed with severe MV regurgitation the clock starts ticking, with a give or take 10 ... Read more
Check out this article on MI heart valves
Journal posted on April 14, 2015
http://m.startribune.com/lifestyle/health/295842991.html

This was in the Minneapolis Star Tribune
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Barry Van Gemert  Hopefully not too many people lining up for that procedure!
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Terry Shermeister   Hey Ben, the most difficult part of the procedure for me was waiting a few days before I could get ac ... Read more
Just got the results of my month long monitoring
Journal posted on April 14, 2015
Preliminary results indicate no AFIB! Even during my Kettlebell sessions my heart functioned normally despite the regurgitation. Also no other symptoms no SOB, and normal BNP. Next Tuesday is my TEE and then I'll have a complete picture of my condition and a better idea as to when I'll need surgery. None of the doctors that I have consulted with seems to think it's urgent, but I'll know more in a few weeks.
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Tammy Pilcher  That's great news, Ben!
Just had a phone consult by a surgeon at the UofM
Journal posted on April 7, 2015
Dr Kenneth Liao, their head surgeon for both valve replacement and minimally invasive surgery just called me. He shared with me the current landscape in the Midwest for current surgeons. Apparently he does the most minimally invasive Mitral repairs of any surgeon in the region ( over 200 over the last few years) He is listed as one of the top cardio thoracic surgeons over multiple years locally. It looks like having it done via the Davinci will not be an option. The only surgeon in the Midwest doing these via the Davinci was at Mayo and he's leaving for Abu Dabi to head up their program. The guy remaining is "old school" that mostly does these via the standard incision.

So my question is, how do I validate this surgeon's claim that he does the highest volume of minimally invasive Mitral repairs in the area?

Ben from Minneapolis
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Tim Goff  I couldn't get those stats either and went with trusting what my surgeon told me. Because I had a MAZ ... Read more
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Wiliam Height  I would loved to had a minimally invasive procedure, but my surgeon's repair success rate of 99+% is ... Read more
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Ben Hyman  I still need tests to determine if my valve can be repaired with a smaller incision. I'll know more ... Read more
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Barry Van Gemert  Ben, At your age you probably have Barlow disease which makes the repair a bit of a challenge except ... Read more
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Ben Hyman  I agree with you. There's a surgeon at Abbott that is their go to guy for minimally invasive repairs ... Read more
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Wiliam Height  Follow your "heart" and make a decision....
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Ben Hyman  I have an appointment on May 19th
Just called Mayo in Rochester to set up a consult
Journal posted on April 6, 2015
The guy I saw at Abbott said that if I want to have my Mitral repair done robotically as the recovery time is shorter due to smaller incisions, see Dr. Rekesh Suri at Mayo. He's probably the best guy in this region for that procedure.

I just learned that he's leaving Mayo and not taking any new patients. Dr. Richard Daly is taking over heading that program. It looks like he's been at Mayo for over 30 years, but he's not listed in this site's Surgeon Finder. Does anyone have any feedback or Intel on this guy?

Ben from Minneapolis
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John Fichera  Hey Ben,
I just had my mitral valve repaired robotically on February 23rd. I was home on the 25th a ... Read more
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Ben Hyman  Thanks John...that's awesome and exactly what I needed to hear!
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John Fichera  Glad I could be of help. Let me know if I can be of further assistance.
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Ben Hyman  I'm 10 years older than you are. Are these results still possible in your late 50's and still otherw ... Read more
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John Fichera  I really don't know but I have to believe the recovery would be faster than going through a sternotom ... Read more
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Ben Hyman  Thanks John,

Unfortunately University of Chicago is out of my network and out of reach. Mayo in Roc ... Read more
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John Fichera  I understand. I'm sure you will find a great surgeon. don't let the operation get all into your hea ... Read more
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Terry Shermeister   How are you doing Ben. I'm just following your posts. I am still stressed about this situation. My ... Read more
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Ben Hyman  Hey Terry...hanging in there. Hoping to choose my surgeon soon. I'll pull the trigger to schedule it ... Read more
Update on my consult with Dr. Pedersen
Journal posted on April 4, 2015
The meeting went very well. In fact there's a possibility that I may delay getting surgery.

He did confirm that my Mitral Insufficiency is in the severe category. It's the Postetior leaflet that has a degenerative process. It's also the easiest to repair when the time comes. He said that there are generally 4 indications that surgery is needed; Pulmonary Hypertension, rising BNP levels in the blood (a marker for heart failure) Ventricle insufficiency, and AFIB . My BNP test was normal, and there is no Pulmonary Hypertension indicated. My ventricle is normal and I have no SOB. I'm now waiting to complete my month long heart monitoring to see if AFIB is present. If none is detected , he said that watchful waiting is reasonable . He said that Echos every 6 months would be prudent to detect any further damage and then schedule surgery. My upcoming TEE and the results from my monitoring are in a few weeks. Until then, everything is in a holding pattern.

Ben from Minneapolis


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Barry Van Gemert  Ben, you need to read "2014 AHA/ACC Guideline for the Management of Patients With Valvular Heart Dise ... Read more
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Terry Shermeister   Hi Ben, thanks for the update. I just looked at the video that Barry referred to which was interesti ... Read more
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Ben Hyman  Hey Barry,

Thanks for the recommendation ... I just found the paper on line and read the portion tha ... Read more
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Barry Van Gemert  Ben, Pg 2459 Table 13 if you are asymptomatic with severe MR and LVEF <60 and LVESD > 40 you are stag ... Read more
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Wiliam Height  I'm not a doctor and you have to trust yours. If your MVR is indeed severe it is stressing your LV, ... Read more
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Duane Beeman  All this talk about strenuous exercise has made me tired. I think I'm going to take a nap now. In m ... Read more
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Ben Hyman  Trust me..,I'm not going to screw around with this. Once I'm comfortable with the center and surgeon ... Read more
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Terry Shermeister   Hi Ben, I'll share with you what my surgeon shares with me on Wednesday, I'll ask him about minimal i ... Read more
Now in the hospital waiting area waiting to meet Dr. Pederso
Journal posted on April 2, 2015
I'm 20 minutes early and the seconds on the clock seem to take forever. When you're contemplating a life altering event like OHS, it gets pretty easy to focus on what's most important, like your friends and your relationships. Scared but also excited about successfully going through this and having a healthy heart and new life outlook.
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Nancy D  Prayers coming your way for a great meeting; questions answered and all the way through a picture per ... Read more
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Terry Shermeister   Great Ben! It will be nice to get information the moving forward.
Next consult tomorrow afternoon
Journal posted on April 1, 2015
I meet with Dr Wes Peterson, the head of the Heart And Valve Center at the Minneapolis Heart Institute at Abbott Northwestern. This is supposed to be a "world class" center on par with Mayo. If I'm convinced that I have a chance at repairing my valve rather than replacement, and possibly a minimally invasive incision, that would be so much easier on me and my significant other rather than traipsing off to Rochester. I just hope I'll have the support I'll need post op. I'm not married, but my significant other has assured me that she'll be there for me.

Anyone in addition to Tanmi have experience with Abbott? I'd love to hear more and compare notes.

It's starting to feel "real" and the surgery is not even scheduled yet.

What were other people's emotions as they were in this phase of their journey. Looking for feedback and emotional support as I go through this. I'll gladly help others as I go through this and learn what to expect.

Ben from Minneapolis
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Terry Shermeister   Hi Ben. I'm sure all will be good. For me I'm anxious as hell. I meet my surgeon one week from today. ... Read more
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Ben Hyman  Thanks Terry!

I have a TEE scheduled for 4/21 at noon. I had to schedule it on a day my SO can take ... Read more
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Terry Shermeister   Nope remember I'm the Madison guy😊. My best friends lived up in the cities until the traffic got ... Read more
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Ben Hyman  Thanks Terry.

I'll give an update after my consult tomorrow

Talk soon

Ben
Have my next consult at Abbott Norteestern next week
Journal posted on March 27, 2015
In order to prepare, I'm wondering what questions I should be asking to help determine if they are the right center to hopefully repair my leaky mitral valve rather than replace it.

What else did people do to figure out which surgeon and hospital to select? What were some "red flags" that caused you to look elsewhere? In MN, Mayo in Rochester is an option and they're ranked right behind the Cleveland Clinic. Abbott Nortwestern also has a national reputation. There's also a highly rated surgeon at United Hospital in St Paul named Dr Grehan that specializes in valves . He claims to have done over 1000 procedures with over 600 Mitral Valve repairs. Does that sound like a large enough number ? The first surgeon that I spoke with only does standard sternotomies, not comfortable with minimally invasive procedures, and only does about 25 valve repair/replacements per year. That did not provide me any comfort or reassurance.

I would appreciate any thoughts or feedback on this. Also names of other surgeons in MN

Ben from Minneapolis
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Terry Shermeister   Hi again Ben. Have you read Adam's book? There is a chapter that addresses the questions one should ... Read more
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Ben Hyman  Thanks Terry, yes, I've read Adam's book but was also looking for additional insights from the commun ... Read more
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Tammy Pilcher  Ben, I used the surgeon finder part of this site to find my surgeon. I'm in Florida and used Dr. Acc ... Read more
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Ben Hyman  Thanks Tammy , I did use the surgeon Finder and it didn't give me a lot of feedback. Only one surgeo ... Read more
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Tammy Pilcher  Oh, I'm sorry there wasn't more feedback than that for MN. There are so many people on here, hopeful ... Read more
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Tammy VanBuskirk  Hi Ben, I haven't found a surgeon yet either. However I have went through three cardiologist. The fir ... Read more
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Ben Hyman  Thanks Tammy..I totally agree. My gut told me that first surgeon I met was not the right fit, despit ... Read more
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Tim Goff  Ben I can check my old emails as my surgeon here in boston provided options at other centers includin ... Read more
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Tammy VanBuskirk  Hi Ben, sorry to hear you have to go through so much alone. I do like to keep my questions in my note ... Read more
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Tim Goff  Hi Ben, I checked my notes and Dr Rakesh Suri at Mayo was recommended by my surgeon as an excellent c ... Read more
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Ben Hyman  I've heard of Dr Suri at Mayo. He's one of the top guys in the nation for Mitral Valve repair. There ... Read more
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Terry Shermeister   Sounds as if everything is progressing well Ben! Hope you are feeling well. Take care Terry
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Ben Hyman  Thanks Terry...SFSG...I still don't have any real symptoms...No SOB...no unusual tiredness...still do ... Read more
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Terry Shermeister   Hi Ben: The TEE freaked me out as well, but actually going in, meeting the people and having them e ... Read more
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Ben Hyman  Thanks Terry

It does help. My younger brother has a similar procedure due to Barrett's Esophogus and ... Read more
Question on the role of your primary physician
Journal posted on March 23, 2015
I asked this question while responding to someone else in their post. If that was improper, I humbly apologize .

My regular internist knew that I had severe Regurgitation since 2008. He never once mentioned it to me during my yearly physicals. He only said I had MVP and to get it re checked every 3-5 years. I missed the last interval but he wasn't concerned. I didn't even know about the MR until I read all of the Echo results on line for the first time 2 weeks ago.

I like my internist but Zi think he really dropped the ball on this one. If your doc discounted this condition, would you keep him or find a new doctor?
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Nancy D  If I had a good relationship with him, I would ask him now to refer me to a cardiologist. They can't ... Read more
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Barry Van Gemert  The ball has been dropped here for sure. When you had the ECHO in 2008 didn't you meet with a cardio ... Read more
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Ben Hyman  That's the lesson here. No matter how good you believe your primary doctor is, you (meaning me) is ul ... Read more
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LaDonna Mangile  I think he dropped the ball! May be nice but nice isn't what we need we need smart and forward thinki ... Read more
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Ben Hyman  Would agree ...fortunately my new cardiologist is young, smart and seems to know what he's doing
Just finished Adams book
Journal posted on March 23, 2015
I read about the recovery process that Adam went through with amount of help he needed to get his basic needs met while recovering from his surgery, the cardiac depression he experienced, and how long it took him until he could go back to work. He was very lucky to have that large support network to help him through.

I unfortunately am in a different boat. I'm not married. I have a wonderful significant other that said will be there to help, but It still may be much more than she tealizes. I have 2 brothers but up to now, we haven't been that close and I'm not sure either one would be up for it. My mother is around but has to care for my father who needs round the clock care. . I don't have a large network of friends and I would've dream of imposing on my co-workers. If I'm out for 15 weeks like Adam was, I might not even have a job to come back to.

How do people get through this if they don't have the extensive network like Ad has to get that level of support?
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Tim Goff  One step at a time Ben. Once you have selected a surgeon and facility, then you can move onto care, c ... Read more
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Greg Johnson  I would have been in a world of hurt if my wife had not taken off three weeks to stay home and assist ... Read more
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Clare Auten  I agree with Tim. One step at a time. I was out of work 10 weeks but I think the time depends on your ... Read more
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Clare Auten  Meals from friends helped a lot. we used paper plates for weeks. Laundry was one chore that took a lo ... Read more
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Ben Hyman  Thank you all for your feedback! It really helps. Fortunately my significant other and I plan on livi ... Read more
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Terry Shermeister   Hi Ben, I'm kind of in the same place that you are. I do not have a wife or significant other and I' ... Read more
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Pat Bluemel  Something to ponder. I have a SO and it was just us. I resisted all requests for help or even visit ... Read more
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Ben Hyman  Thank you Pat! That's very reassuring!
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Ericka Carlson  Pat, that is very reassuring!
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Pat Bluemel  You guys will be fine. I'm on week 5, drove myself to and from cardiac rehab where I did a full hour ... Read more
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Terry Shermeister   Hey Ben how are you doing. I read your post yesterday about the primary not getting the info that yo ... Read more
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Tim Goff  Ben, I am home now and feeling pretty damn good considering. I recall that you mentioned contacting m ... Read more
Just got Adam's Book
Journal posted on March 20, 2015
Really well written and it's going to be snug help as I prepare for surgery
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Mary Myers  Basically same as Nancy. I am eight months out and doing well. So thankful for each day,!
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Ben Hyman  Glad to hear you're doing so well ...where did you go for your procedure?
Curious about how Heart Valve Centers get listed
Journal posted on March 20, 2015
I live in MN and still have not selected the hospital that I will be going to for (hopefully) Mitral Valve repair instead of teplacement. There are no centers listed in MN , not even the Mayo Clinic which seems to have s highly rated center.

What criteria was used to select the hospitals on this site? I want to be as close to home as possible but still get the best outcome. Do I really need to focus on the hospitals listed or would I have as good a chance at getting the valve repaired at either, Mayo, Abbott Northwestern or United Hospital in St Paul? All of these centers tout their skills in Mitral Valve Repair. How did you make your selection?

Ben
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Barry Van Gemert  Ben, It is all about finding a doctor that does hundreds of these surgeries a year and maybe has done ... Read more
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Ben Hyman  I would agree wit that sentiment! The first surgeon that I met with does about 25 Valve surgeries per ... Read more
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Barry Van Gemert  Your life does depend on it. You don't want to wake up finding out the valve is replaced. A life of ... Read more
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LaDonna Mangile  I'm having my repair at Mayo Clinic on March 30 and feel very good about it. I figure they are not a ... Read more
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Ben Hyman  Thanks LaDonna. Who is your chosen surgeon at Mayo?

Ben
How is this possible?
Journal posted on March 19, 2015
I just finished another Kettlebell workout...35 minutes of intense swings, snatches and cleans with double 12 kilo, 14 kilo, 16 kilo and 18 kilo bells, 15 minute stretch at the end... And I hardly am out of breath ...and with a severely regurgitating Mitral Valve in my heart. If I hadn't seen the echo results myself, I would have thought this was some kind of sick prank. Has anyone else had these same feelings? The human body is an amazingly resilient machine!
Ed Smith  Ben, like you I had virtually no symptoms and had to have faith in the Echo results, which clearly sa ... Read more
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Barry Van Gemert  You can have severe regurgitation and be asymptomatic. Maybe because your disease progressed so slowl ... Read more
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Clare Auten  I agree with Ed. Check with the Dr about the weights. I said something to mine and he said to lift no ... Read more
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Ben Hyman  I asked my doc about my KB workouts and he thought as long as I was tolerating it I could continue .. ... Read more
Anyone from Minnesota in this network?
Journal posted on March 19, 2015
I'm wondering if there is anyone from MN either about to or successfully gone through a Mitral Valve repair or replacement. There are quite a few surgeons from MN listed but no Heart Valve centers dedicated to these procedures. I know we have some of the best health care in the nation but would greatly enjoy (and appreciate) connecting with local patients that could share their experiences and offer some first hand guidance on what to expect and what steps I should take to prepare. Once I'm done, Ivwill gladly do the same. I hope to make some connections here that will last far longer than the procedure itself and the recovery.

Looking forward to hear from some of the local community.

Ben
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David Brunkhorst  Ben, I had my AVR and arch repair at the Mayo Clinic-Rochester. Dr. Alberto Pochettino was my surgeon ... Read more
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David Brunkhorst  Ask me anything. Us guys that have had open heart surgery love to talk about it.
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Ben Hyman  Thanks David,

Let me know how we might connect some time. Would enjoy getting your first hand prosp ... Read more
Wondering about night sweats
Journal posted on March 19, 2015
I started getting night sweats at exactly the same day that I learned I would need OHS to resolve my current problem . I thought it might be due to stress and anxiety, or perhaps my decision to stop drinking coffee to keep my BP under control..

I'm waking up at the exact same time with a wet under shirt. When I fall back asleep again it seems to subside.

Has anyone else had this? What could be causing it?

Thanks!
Wondering about night sweats
Journal posted on March 19, 2015
I started getting night sweats at exactly the same day that I learned I would need OHS to resolve my current problem . I thought it might be due to stress and anxiety, or perhaps my decision to stop drinking coffee to keep my BP under control..

I'm waking up at the exact same time with a wet under shirt. When I fall back asleep again it seems to subside.

Has anyone else had this? What could be causing it?

Thanks!
Janice Smith  Hi Ben. I, too, have had the night sweats since my surgery last September. No reason given, but tha ... Read more
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Ben Hyman  Thanks Janice! Mine started the very evening after my initial meeting with a surgeon where I learned ... Read more
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