Ben's Guestbook

Steven Kantor posted a note for Ben that says: Ben

I enjoyed reading your story!
Thanks for sharing. Wishing you continued health. It seems you did an amazing job of surrounding yourself with a perfect medical team. Stay well.
Steve

Candas Jones posted a note for Ben that says: Hi there, how are you doing? I have been healing well.

Valerie Archual posted a note for Ben that says: Ben- I am curious about this orthostatic hypotension and your stroke. I am battling dizziness and more severe migraines since my mitral valve /ASD repair but pvcs too. They released me from hospital last night but I had a weird episode of blurred vision. Called doctors and they said to keep an eye on it as they aren't sure if it's the pvcs making me dizzy or something else. A ct scan of my head was also done yesterday and was fine. My email is valerie@valeriearchual.com

Kathy Blank posted a note for Ben that says: Ben- so thankful you are ok after your stroke. Hope you are getting back on track with your recovery. It is hard to fathom the medical advances today that are saving lives of us all on this site! Not sure us elective robotic folks on this site expected the ups and downs from our surgeries! Hope you are feeling much better and that you are back to 100% soon!

Shar posted a note for Ben that says: Ben -- so glad to hear the good news that you are doing so well! Hope to see you soon. Shar

duane butterfield posted a note for Ben that says: Ben I had robotic surgery on Jan 11. Dr Maltais and Dr Daly. The only side effect I had was fatigue for the first couple weeks. Some depression that I think is from new blood pressure meds. Where do you live I m in Iowa Cedar Rapids area. I back playing golf and doing everything I did before. We to were impressed by Mayo my wife had valve replacement there in Aug 16. Surprising what they can do. Keep in touch Duane

Joseph Freeman posted a note for Ben that says: Ben,
So good to see you up and about! Thanks for keeping us up to date. I promise to do the same.
What did you do to keep from running off the rails prior to surgery? Less than a week for me, and having waves of occasional anxiety.
Continued good health and recovery.
Joe

Jeff T. posted a note for Ben that says: Glad your surgery was successful. You can wait a day but get it ASAP so your dose can be adjusted if needed. I went on Coumadin for several months after my combined mitral valve repair and MAZE procedure. It is a pain to have to keep testing blood and to monitor your diet so you don't spike your levels up or down. But after valve repair Coumadin is the proper thinner.

Pattie Schott. Pschottr227@gmail.com posted a note for Ben that says: I was on Coumadin after I had a Mitral Valve replacement , i managed my levels and after 6 months , my doctor said I didn't need it anymore. ❤❤❤❤

Larry Jacobs posted a note for Ben that says: Glad to hear your surgery went well. I was on Coumadin for 3 months before my cardiologist took me off. I had to get tested twice weekly and went to a lab not far from my house. Skipping one day will not have much of an impact, especially since the Coumadin takes 3 days to register. Good luck.

Penny Piston posted a note for Ben that says: Hey Ben,
1 day shouldn't hurt as long as you don't have any bleeding, etc. 1 had 3 valves replaced with mechanical ones so I'm on Coumadin every day for the rest of my life, which means blood testing weekly! It can be a pain but beats the alternative. You'll be off of it before you know it. Glad your surgery went well.
Penny Piston

Steve M posted a note for Ben that says: Ben, congrats on a successful surgery! I received a St. Judes mechanical aortic valve in April 2010. I have been on coumadin since then. I have been lucky in that my INR is really consistent. I have not noticed any side effects except I get cold from the thinner blood I guess. It has not altered my life style. still go fishing, hunting, biking, golfing etc. No bleeding issues. Everyone is different but I would say if the MDs recommend it try it.

Artie Rubin posted a note for Ben that says: Hi Ben,

First, congrats on getting through the op!

I had a mitral valve repair and an aortic valve replacement (cow). I was put on Coumadin straightaway, and I think they do that with everyone. I had to go to the local anticoagulation clinic once a week to get my INR monitored and adjusted. It wasn't difficult for me. Four months after my op, my cardiologist took me off Coumadin for good. Hope this helps.

Best,
Artie

Jeffrey Jacobs posted a note for Ben that says: God bless you Ben! I am going in for valve replacement #1 procedure this summer. Knowing about others' experiences really helps. How wonderful and fortunate to be here in the US with the world's best surgeons and health care. JW Jacobs, Alexandria VA

Joe Freeman posted a note for Ben that says: Hi, Ben
Thank you so much for sharing your story and your words of encouragement with me. I was never much interested in blogs or social media until now. I've come to realize what invaluable tools they can be! Yours and others responses to my pending OHS Guestbook has been a blessing.
Like you, I promise to pay it forward.
God Bless you Ben on your rehab and future endeavors.

Mark posted a note for Ben that says: Hey Ben,

Great to hear all went well. Be a good patient! See you soon.

:)

Anita Ibarra posted a note for Ben that says: Congrats, Ben,

My doctor from Mayo also put me on Coumadin for three months. When I left the hospital, my INR was 2.3. The normal range for Coumadin patients I believe is 2-3. I was taking 5mg tablet. I had my first INR one week after I was discharge. And my INR went up to 2.7, still in normal range. Then when I went to Mayo for a follow-up after a week, I had my INR tested and it was really low, just 1.3, which was a blessing because I had an emergency thoracentesis that same day because of pleural effusion. After two week of that procedure, I will be going back on Wednesday to have another one because my pleural cavity is filling up with fluid again.

I hope you will have a normal and quick recovery...not like mine.

God be with you always.

Shar posted a note for Ben that says: Such great news, Ben! SO glad you are progressing so well! Thinking of you! Shar

Terry S posted a note for Ben that says: I relate to all the tube stories! That last drainage tube is a real relief.

charlie.southwick@abilitynetwork.com posted a note for Ben that says: Ben good to see it went well. I think you should wear the blue hair cover on your first day back :) It is awfully quiet around here... Charlie

Garry posted a note for Ben that says: I'm so glad to hear things went smoothly, Ben!

Shar posted a note for Ben that says: Praying last night and today for you, Ben -- sounds like it went well -- so relieved! Will be continuing to pray for your very fast recovery! You'll do GREAT!

Larry Ring posted a note for Ben that says: Prayers and blessings going out to you and your entire healthcare team...
See you soon on the recovery side of this journey!

Deborah Uher posted a note for Ben that says: I'll be thinking about you.

Tracy Simmons posted a note for Ben that says: Hi Ben. I just ran across your post and the "Mayo" caught my attention. I had mitral valve repair at the Mayo in Rochester on March 7, 2016. I think you'll be in very good hands and you will be so relieved when you wake up after your surgery. If you have any questions, please let me know and I wish you the very, very best. I'll actually be headed up to the Mayo in March for my annual appointment / echo - very excited about the echo since it's been a year (and honestly a bit apprehensive too even though I'm back to my old self). Good luck -

Phyllis Petersen posted a note for Ben that says: How are your preparations coming along? Are you feeling a little less anxious? The emotional roller coaster can be awful!

Melanie Nelson posted a note for Ben that says: Hi Ben,

I have been reading your journal along with many entries from you and others on the Facebook pages of Mitral Valve repair groups and other heart related groups. I just wanted to reach out to you because it looks like we are in similar stages of what we have going on. If I remember correctly you are scheduled for March 15th for a minimally invasive robotic repair. I too was scheduled on the same day for the same procedure. I think I also read somewhere that you are 59 years old. I am also 59. My surgery has now been moved to March 17th instead. I live just outside Seattle but will be traveling to Spokane, Washington for my surgery which is approx. 5 hours away. Seattle has many top notch surgeons but my cardiologist recommended my particular Dr because of the amount of these surgeries that he does as well as his years of experience with the robotic surgery. I will continue to follow your journal and hope the best for you.

Tracy posted a note for Ben that says: Hi Ben. I had MVR at Mayo in March 2016 using minimally invasive procedure, but not robotic. I cannot say enough good things about the Mayo.

Stephanie Jones posted a note for Ben that says: Did you have your TEe yet? I echo showed moderate and my TEe showed severe. The TE is much more detailed and clearer picture to measure

Mary J. posted a note for Ben that says: No problem Ben. Somehow I feel obligated when reading on here how folks have been told "you'll do great, you're young, healthy" etc. What docs and other medical staff refer to is a patient's probability of a successful procedure and outcome without complications (after all they're surgeons not cardiologists or GPs). Also, minimally invasive has many upsides to it but no heart surgery should be described as a "breeze", I mean really this is heart surgery after all.

To Bob's question about high volume, Adam has a post on his blog that might explain it better. http://www.heart-valve-surgery.com/heart-surgery-blog/2010/11/19/valve-clinic-tour-inova-heart-vascular/) I had mine done at Inova, but they aren't that huge (not like CC) but perform a high volume particularly for their size (I hope I'm explaining it right?). My information is based on my experience and I hope not to come across as "advocating" for anything, but it's what I know because that's where I had my procedure done. But I perhaps saying that there is a resistance in the cardiac surgical community to minimally invasive heart procedures. There is a learning curve involved as well as training and surgeons become comfortable with their outcomes doing one specific type of procedure through the sternum. At least Dr. Gillanov is honest about the fact that there are about 5 surg centers in the country specializing in minimally invasive (and CC isn't there yet, not sure they want to be). But if I could not have had the minimally invasive, Dr. Massimiano is known as the "mitral valve guy" in this geographic area (Wash D.C. metro area) so I would have been comfortable in that regard.

Also regarding the robotic, a surgeon can't do a side incision and go between the ribs and do the repair with their hands, so whether it's long armed instruments or machines or both, it's still machines, just not robotic type machines.

The good news is there are surgeons out there excited by the technology and who are not afraid of the learning curve of minithoracotomy, the bad news is the young ones don't have the numbers (experience) behind them yet or their institutions aren't fully supporting it yet or both, perhaps that will change.

Also not every patient is a candidate for minimally invasive, for example your arteries have to be clear and free of blockage.

Mary J. posted a note for Ben that says: I'm responding to your question regarding "robotic" mitral valve repair. It is my understanding that fully robotic surgery is not used by the most experienced surgeons now, but rather that they opt to use a machine (again not robotic) for mitral repair. My experience was that a mitral repair done through a small right side incision was best for me (and I'm grateful for it) but I'm sharing what I was told prior to surgery, which was great advice (this paragraph and below).

It's all open heart surgery. There is closed chest (minimally invasive) and open chest (open sternum). They do the same things in minimally invasive as they do in open chest surgery, but need to go through the ribs and around organs to do it minimally invasively. There is less blood loss, pain, hospital stay and general recovery time (at the onset) for minimally invasive. But this is very serious stuff no matter how they go in and you must take it seriously. Get as many surgical opinions as possible, go to a heart/valve center that is high volume, fully supports minimally invasive approaches and get a surgeon that has many, many years of experience (and have many of these procedures under their belt) with mitral valve repair and with the minimally invasive procedure. Another thing with the minimally invasive is that you might be on the heart/lung machine for a bit longer than with the open chest procedure, so with a very experienced surgeon you will only be on that machine a little bit longer (vs. possibly quite a bit longer) with someone less experienced.

Recovery is different for everyone. I heard this so many times before my surgery and it drove me nuts (no answers), but turns out it's true, it's very individualized. Those under 65/70 years old will feel more pain than older folks and will have a harder time trying to resume "regular life". It's at least a year before you are "kind of yourself" again, but the full recovery is longer. My recovery was not linear by any means. One step forward, 1.5 back sort of thing. Not predictable and not a clear trajectory. Recovery takes a long, long time. Not trying to scare you, but the advice I got pre-surgery helped so much. Don't let anyone sugar coat this, it's rough.

I had mitral repair (with flexible ring put in) and rebuilding of the chords, when I was in my early 50's. I had MVP, severe regurgitation, broken chords and was in the hospital for about 2.5 days and am about four years from surgery. Dr. Paul Massimiano at Inova Heart Institute (Falls Church, VA) did my procedure, he's amazing, as is the Institute. (Adam has information about the surgeon and Institute on this website.) I was referred to the surgeon by a few people, but a family member who had gone there for aortic surgery recommended Dr. Massimiano too. Even my "surgery buddy" (person who took me to the hospital, took me home, etc.) was very impressed.

After surgery and when you're fully awake, ask for pain meds if needed. An experienced heart hospital will be fine with this. If you are nauseated ask for Zofran (it helped me). When you get the spirometer thingy (plastic gadget you breathe into (sp?) post surgery, treat it like your best friend because it is. Use it often, it will help your lungs expand, helps your breathing and initial steps in recovery.

Duane Beeman posted a note for Ben that says: Ben: I'll let everybody know how this thoracotomy surgery works out. I did not even know this procedure was available until I met with the surgeon. I asked him if he could at least do a mini-sternotomy on me. He smiled and said, "I'm not going to split your sternum at all except in an emergency". I was REALLY happy to hear that. He has conducted this same procedure on others I know. They have talked to me about the results and are really happy.

Lenore Mitchell posted a note for Ben that says: Ben - Thanks for the nice comments you made in my guest book. Good luck to you as
you proceed on the path to surgery.

Dave Van Buren (DVB) posted a note for Ben that says: Ben: Send me your phone number and some convenient times to call in the next few days. Use this email: frombenhyman.10.hvjuser11@spamgourmet.com - it will get to me. Spamgourmet is a privacy-preserving email forwarding service that can be used to help control your digital footprint.

Dan D. posted a note for Ben that says: The only books I'm currently reading are Adam Pick's Book and Peggy Huddleston's "Prepare for Surgery, Heal Faster." I've also acquired a Meditation-type CD/MP3 from the hospital where I'm having surgery (Northwestern in Chicago). I'm having an angiogram tomorrow and get pretty anxious as I take steps toward my surgery in May. Thanks for your response to my journal.

Jackie posted a note for Ben that says: Ben,
In my opinion, it is always better to be proactive, when it comes to your health or the health of a family member. Remember that
Doctors are human,and they do call it Practicing medicine. If you don't have confidence in your Dr it's time for a new Dr.
Wishing you many years with a healthy heart.:)

Lynn posted a note for Ben that says: Hi Ben,

I'm from the Minneapolis area and had robotic mitral valve repair at Mayo Clinic June 2013. My primary cardiologist is in the Twin Cities, but he recommended I go there for a second opinion and surgery. I was very impressed with Mayo. I know there are also excellent surgeons in this area, the Mayo Clinic option seemed the best route for me to take at that time. Good luck with your decisions, I know it is daunting.

Lynn

Nancy D posted a note for Ben that says: Welcome Ben! This is a great site for resources that will enlighten you and help with questions. The people here are a great support as well. We all have our unique stories, no two are exact, but through sharing them it helps others. Take good care!