Ben's Journal

Emily Shively  I am 5-weeks post-op and I saw my surgeon yesterday and asked him this exact question. He said at this point, laying on my side will not affect the healing of the sternum. I mentioned that it still felt funny when I laid on my side and he knew exactly what I meant. He said it will be like that for a little while but eventually will go away. But that funny feeling does not mean that anything is wrong - the bone is not shifting. So, it probably depends how far out you are from surgery, but for me at 5 weeks I got the go-ahead to try side sleeping again.

joni moore  thanks emily! thats a great question to ask your surgeon at your follow up appt.Good luck with your side sleeping Emily! all those little things we took for grantedthat we lost and are getting back, these little miracles that happen , its like getting a present everyday!!!

Nancy D  Welcome home!! continue to rest, concentrate on you, and your daily activities, deep breathe, and did I mention rest? Slow steady progress feels better than overdoing and paying for it after!! Great job so far!! Take good care!

Jim Kelly-Evans  I Think it reads your "story"...did you finish putting all of the information into it? Click "edit your story."

Jim Kelly-Evans  That's one big obstacle behind you...choosing the hospital and surgeon. Now you can concentrate on getting ready. I wish you the best going forward.

Eleanor R  For me, too, choosing who and where was the main issue. Once I found the "perfect" surgeon for me, and had a date, even though I had to wait for him, I felt much calmer. I have a number 1 regional heart and vascular institute about 5 mins. from my house, and they do heart transplants for the region as well as OHS, so I felt "safe". Turned out well, and I wish the same for you. Just make sure the surgeon does multiple operations a week, and that the hospital does many, many a week, and you should be fine.

Cheryl Batzing  Ben, Austin is a great town...and if you are comfortable with surgery, being close to home is a huge benefit/blessing! I had surgery about 20 min. from my house and it's awesome to have that, Ben. Prayers being sent your way, heart brother!

Kimberly Biddick  Glad you found a surgeon and a hospital. I am sure being close to home and in your comfort zone has many advantages! Best wishes to you!!

Ben Schraegle  Hello Ben. I think it is always good to get that second opinion. I did and am glad I took that route. 3 Weeks and 1 day since mitral and aortic valve repair! I am doing great and feeling stronger every day! God bless and all the best!

Tammy Pilcher  Ben, I decided to go to Orlando for my surgery which is 7 hours away. I could have gone to either Pensacola or Panama City which are only an hour away. I decided to go with a surgeon I found through this site and Adam's book. He had great reviews and does over 300 valve surgeries a year. The local surgeons just didn't do the high volume of valve surgeries. I am so happy I made the decision to go to the hospital and surgeon that had the most experience with valve surgeries! I felt that if any complications arose, they would probably have seen them before and be better prepared to deal with them. My advice is to look at the numbers of valve surgeries they do and their reviews. Prayers and best wishes!

Jon Mircetich  Absolutely Ben, I could not recommend it more, a bit of my story...I was diagnosed with severe MVR in Feb by a local cardiologist who stated I was in terrible shape and needed to get surgery immediately. Being asymptomatic, I god a second echo and referral from a cardiologist out of the area. He stated I was on the bubble of severe and surgery would not be a bad idea because I was young (45) and healthy "put it behind you". So we sought a surgeon at Stanford U, highly recommended (Craig Miller), who looked at my echo and said I was 5 years out from surgery, go home and live your life, forget about it. Saw another surgeon that day (Luis Castro) at Sequoia hospital who said get it behind you but no pressure for surgery. Well I decided to watch and wait, get echoes every 6 mos, but after 6 months I have become symptomatic and there has been some change in my heart so I will be going in for a consult in a week. So get as many opinions as you can, in my case some were vastly different than others. Both surgeons as consider "the best" so no worries on that end.

Cheryl Batzing  Ben, I'm in the Dallas area and just today got released from the hospital after an 8 day stay for a MVR. My cardiologist suggested 3 surgeons, I interview all and go with my gut. I almost didn't do that, because one was hard to get in with. I was SO glad I did, as the last consult was the one I went with. They each told me differing things about how they would repair my mitral valve, and one spent extra time with me talking, explaining, that the other did not. I highly recommend interview more than one. Good luck!

Nancy D  I had a Mitral valve replacement as my valve was not repairable. We have a great facility and cardiac team in Tyler, and my kids wanted me to go to Dallas -Fort Worth for evaluation and surgery. I met my first surgeon in Tyler and was very comfortable with him, his approach and his time he spent with me. After going home to think about it and discuss it over with my husband, I decided to stay close to home, as I felt I was in excellent hands here. It was important to me to have close follow up and not have to travel too far for post op or problems if any arose. I think you know in your gut which way to go. If you aren't sure after meeting the first one, then by all means go to the next one. You will soon know where you are supposed to be. I was fortunate that my choice was right close to home. I received excellent care and follow up and am doing well 4 months post op. Good luck in your search and finding the right way for you!

Tammy Pilcher  Ben, I second what everyone already said and would add make sure you choose a surgeon and hospital that does volumes of these surgeries. Those will have seen the complications that can arise and know how to best deal with them. Check their success rates too.

Michael Meyer  Ben:
Choosing the surgeon and place is very important. I narrowed my search to Cleveland Clinic, Mayo and Mt. Sinai. The physicians I considered were Dr. Suri, Dr. Gillinov and Dr. Adams. I chose the midwest location because I live in St. Louis. I was scheduled at Mayo and decided on Cleveland Clinic. I had an initial consult with a world- renowned cardiovascular physician in St. Louis, but he did not perform the procedure that I was interested in. He did confirm my need for surgical repair.

According to the literature you should be looking for a high volume hospital and looking for a surgeon who has performed >200 valve surgeries with an average of 2 valve surgeries per week. I did not look in Texas due to distance. Insurance also played a part in my selection but I was fortunate that both Cleveland Clinic and Mayo were covered under my insurance plan.

tina fluhrer  15 Let the peace of Christ rule in your hearts, since as members of one body you were called to peace. And be thankful. 16 Let the message of Christ dwell among you richly as you teach and admonish one another with all wisdom through psalms, hymns, and songs from the Spirit, singing to God with gratitude in your hearts. 17 And whatever you do, whether in word or deed, do it all in the name of the Lord Jesus, giving thanks to God the Father through him. A message of peace,http://www.jamesmacdonald.com/radio/#divAudioPlaylist-tab

Bob M  Ben, welcome to our awesome Community. We are all here to pray for you and to give you peace that others are already on the other side of open heart surgery. We are standing by the door and welcoming those who will see a new day, with a fixed heart. God bless and rise up!

Nancy D  the holding pattern you are in, for me was the hardest part. Once I had a plan of care, and a surgeon, the date was selected and thankfully it wasn't a long wait. Happy to say it was nearly 4 months ago, and I haven't looked back. Life is great, and its getting better!! Take good care!

tina fluhrer  Hi Ben, Joe is doing good..................he went in at 5:30, surgery at 7:30. doctors came out at 10:30 to give the good report that they are pleased with his surgery. The family fell out let me tell ya. we were shocked to be called so early for a briefing. At 2 he is rolled to icu and at 4 he was slowly woke up. He has the breathing tube off and they stabilized his blood pressure. He has said hi and smiled as he came around. My mom asked how he felt from a scale of 1 to 10 and he said 2. He feels pressure on his chest and the docs told him most likely the incision causing that sensation. He is progressing by the book from what the nurses say. He is very thirsty. ICU tonight and the nurses say his own room most likely by tomorrow. We are so happy this is behind us..............we are all emotionally drained. Thank you so much Ben for asking about us. (on the top left of the page should be your profile picture/news link.... hit that link and you can see what everyone posts on a ticker. also the hear link tells you there is conversation going on what you typed on. It is the notification that conversation has continued.) Blessings.

tina fluhrer  it the top right of the page.............sorry, I am a bit over tired......Good night...........and I will upate tomorrow. Praise God!

Bob M  Tina, how is Joe doing today? Did he eat his Popsicle. I ate 3 meals in ICU and it helped me on my recovery.

tina fluhrer  Hello Ben, My brother has had his surgery date scheduled for a long time and his surgery date is now upon him, tomorrow, Dec. 15. He too has had all these thoughts, fears and concerns. The waiting is the hardest part from what I have read on the many posts. NOT an easy road for sure. You will be given support from many heart brothers and sisters. It is reassuring that "we", all of us, have the same concern and worries. This site will help you prepare mentally. ~

Adam Pick  Ben, Welcome aboard! I'm glad you found us. And, I'm glad you are taking the time to share your fears, questions and concerns. As a former patient, I can relate to soooooo much of what you are going through. I guess that is why I created this website... To help you -- and all of us - learn and support each other.

I encourage you to use all the different resources at he website to support you and those around you. My advice to you is to try and not get too overwhelmed. If you take this process step-by-step, you are going to do great.

Again, step-by-step. Please let me know how I can help.

Keep on tickin!
Adam

P.S. To help dispel the fear heart valve surgery, you may want to visit this page - http://www.heart-valve-surgery.com/valve-mortality-surgery-repair-replacement.php.

Tammy Pilcher  Welcome Ben, you came to the right place! This site will be so helpful in preparing for your surgery and recovery! My surgery was 6 weeks ago and I'm doing great! It really wasn't as bad as I anticipated. You can do this!

Ben Fretwell  Thanks to you all! I can already see and tell that this website will be a great help in getting me prepared. One day soon, I will be able to relate my struggles and successes with others who are where I am, mentally, right now.

Jeff V.  Ben, I returned home this past Thurs. following MV repair surgery in Cleveland. In the month leading up to surgery, my anxiety over the issues you describe would come and go in waves. This website was really important for me in processing and managing all of the issues I was faced with. I wasn't necessarily looking for a support network but after reading patient blogs, realized how important sharing this information became for me. I have had the benefit (and distraction) of knowing for several years that my surgery was going to happen but did not know exactly when until my routine cardio appt. in Cleveland in Sept. It was at this visit when I learned it was time for intervention and that it would happen sometime in early Dec. Once I locked in on the date, my anxiety dissipated and the week I arrived in Cleveland to begin pre-op testing I was totally relaxed and confident with the plan. This website was incredibly helpful for me to accept and understand what was coming. For me, the patient blogs were the key in seeing how it wasn't the end of the world but the means to a healthier life. Yes, there are likely going to be some bumps in the road... certainly, ICU is not fun but the people that will surround you in the hospital are awesome and will do their best to alleviate your pain and stress. I have been home since Thurs., 12/11, and feel great. The discomfort is minor and very manageable. I have been sleeping in my bed and keeping reasonably active with 4 kids, 2 dogs, 2 cats and a feisty wife to keep me in line as I am no walk in the park! By the way, my MV repair was rather involved... My surgeon installed a 31mm Medtronic remodeling ring with a physiologic mitral valve shape. The ring helps reduce leaflet stress and increase mitral valve durability. Also, the doctor had to clear up some very sloppy valve chordae and used "neochords" (artificial chordae) to shore up the anterior leaflet. I had a 5 hour run of A-Fib in day 3 of post-op but converted on my own. This complication is very common and reportedly happens 30%-40% of the time following OHS. I expect you will do great! Regards, Jeff V.

Ben Fretwell  Thank you Jeff. I will use your words for encouragement and guidance. Hope your road to recovery is as kind as you.

Tammi Gunwall  Ben, I believe we've all been in that same space as you and is why we're all here. Those thoughts are mine as well and seem to come and go in waves as I anxiously await OHS in early January. You will find peace through the many stories of others here and the overwhelming amount of support and encouragement. Welcome and best wishes to you!!

Jeff V.  Ben, I forgot to tell you that my surgery took 2 hours. The surgeon told me that repair or replacement would take 45 mins. to one hour or longer if additional repairs were required.