Deb Z posted a note for Tom that says: Sherry and Tom,

I'm sorry you never heard from CCF, but I'm glad you you have a surgery date and surgeon you comfortable with. Hanging in limbo is really stressful,......glad you are moving forward and on the road to getting this behind you. All will be well.

Susan Smith, posted a note for Tom that says: Sherry and Tom, Glad you have made the decision, although it may have been made for you. It is a good one and Just as good as your first choice. Do keep us posted as things progress. Tom will do fine. He will be in my prayers.

Brian Reid posted a note for Tom that says: U of M has a great hotel right inside the hospital. It is a 5 minute walk from the room we stayed in the night before to the operating room and ICU. My wife stayed in my room with me in ICU the first night and then stayed in the hotel in the hospital the remaining 2 nights. If you do end up going to Dr. Bolling reserve the motel in hospital ahead of time.

My parents also had a room at the motel. The staff was very supportive of my family and I during our stay.

Carol Jackson posted a note for Tom that says: 1.I agree with DVB below about going to a teaching /research hospital.
2.It wouldn't hurt to call Dr. G's office and talk to his secretary to find out where they are at with the paperwork review. For example when I wanted a specific date(esp. not wanting surgery on a Fri.) I called and talked to the surgeon's secretary. I also asked the secretary if I could be scheduled 1 of 3 dates so my daughter could be with me on the surgery day. They were willing to work with me.
3. A-fib is manageable --my mom has had it for 8 years, takes meds and watches what she eats.

Hope this helps. I know the feeling that both of you are going through. After being on the "not knowing if its time for surgery or not" treadmill for 5 years and then having surgery I realize now how much stress I was under for those 5 years.
Do lots of praying.....it helps.

DVB posted a note for Tom that says: Hi Sherry and Tom.

If you are not getting satisfaction from your local cardiologist you can always self-refer to a teaching/research hospital like UC Davis Medical Center for a consult.

Teaching hospitals are often more responsive than community-centered specialists in small practices who depend on referrals from their local colleagues. One reason is that teaching hospitals have large enough staffs to use a team-based approach that gives them more scheduling flexibility than is easy to do in a small practice.

I had great results at UCLA after not being satisfied with my first cardiologist.

DVB posted a note for Tom that says: Hi Tom & Sherry.

There is an ACC Guideline for the treatment of atrial fibrillation at the url

http://circ.ahajournals.org/content/123/10/e269.full.pdf

which is quite extensive. You may want to take a look to see what's what.

In my quick perusal (I am not a medical doctor) I noted that a-fib is commonly present when some mechanical stress has already begun remodeling the heart. The picture is this. When you have severe mitral regurgitation, the left ventrical enlarges to compensate for the reduced efficiency of the mitral valve. Essentially the LV reservoir needs to be bigger to accomplish enough forward blood flow when instead a substantial amount is going backward. Essentially half the old volume was not enough (because half the blood goes the wrong way), but half the larger volume is. Your heart muscle remodels itself in this fashion due a set of mechanical and molecular interactions that have evolved over the last 600 million years by your ancestors. These mechanisms are adaptive and lead to longer lifespans (and hence more offspring) than otherwise. The remodeling leads in part to the symptoms you experience with severe regurgitation.

So that's part 1. LV enlarges in response to MV dysfunction.

Then there is part 2: the LV "stretch" stimulates the formation of non-muscle connective tissue. So now you have a different mix of muscle and connective tissue in your heart. This changes its electrical properties.

Now for part 3. Different electrical properties lead to different "beats" and A-fib is a common consequence.

So the a-fib in this picture is likely a direct response to your mitral valve wonkiness. In this picture - no certainty, of course.

Now for the consequences. A-fib is associated with increased overall mortality risk (2x over baseline), so it is like being a light smoker. For persistent a-fib. Less for non-persistent I'd guess (but would need to check further). It is associated with a roughly 5x increased stroke risk, because the a-fib causes a different blood flow in the heart with more turbulence and hence a larger chance of clot formation. Again, evolution of the heart has resulted in a structure with very little turbulence when it is "operating normally" and there is minimal shear in the blood flow (blood velocity changes smoothly from point to point). High shear can disrupt blood cells and initiate clotting. My understanding is that this risk operates primarily during a-fib episodes. So if episodes are infrequent, the risk is correspondingly less.

So while a-fib does harm, it is manageable. Explore with your care team options for managing the risk. Take a look at the guidelines (link above) and take them with you if you have another consult to help guide the conversation and understand any treatment options you have.

The good news is that once your valve is fixed then your heart has the opportunity to re-remodel back to normal. If that happens, then a-fib can go away. You should discuss this with your cardiologist: "will my a-fib get better after valve surgery?"

Best to you guys, you're in the home stretch.

Deb Ziegler posted a note for Tom that says: DVB is right......call Dr. Gillinov's office and explain about the Afib and your concerns. It certainly can't hurt, and it could speed up the process. If I remember right (which is a big "if"), CCF meets every three weeks to go over consults as a group. In my case, it took about three weeks to hear from them, and then they wanted me to come there for more tests because the ones I had sent were not good enough quality to make a definitive diagnosis. Like you, I was very anxious for info, and it was extremely stressful not knowing what I would be facing. I had a ton of palpitations/ arrhythmias, but no Afib, so I can only imagine how anxious you must be. I certainly hope you hear from them soon. In the mean time, try to do some meditation or relaxation to reduce your stress level as much as possible. I can guarantee you the more stressed out you are, the more irregular your heart will beat.
Godspeed and God Bless!

DVB posted a note for Tom that says: From a risk perspective: the best surgeons have virtually zero bad outcomes in the last year, provided patients are asymptomatic. In other words the risk differences between them are not measurable, and certainly small. However, waiting six months incurs 3-5 percent mortality risk just from the ticking of the clock. So it would be better to go with the choice that has the earlier opening, certainly if it is earlier by a few months.

Improvement in scheduling surgery is a key area for further reducing the mortality rate of mitral valve disease. Others are a surgeon's commitment to repair over replacement and getting a definitive diagnosis prior to the onset of symptoms for 100% of patients. And of course the one you pointed out in an earlier journal entry: sending more patients to specialty centers of excellence that perform large numbers of valve surgeries.

For me the most anxious time was between initial surgeon contact giving my medical data and getting to a surgery date. Hang in there and be willing to play several options simultaneously if needed. And feel free to nag their offices, many patients do. That's being your own best advocate.

Gabi x posted a note for Tom that says: Hi Sherry & Tom, I understand your concern and just wanting to get it over with. I had my Mitral Valve repaired in July and I am doing well - apart from AF. I am of the older generation - 72 years and wonder at the advancements in open heart surgery over the last 20 years. Tom will be fixed up and made new again (with a zipper scar on his chest just like where you put a battery on a Ken doll) LOL.
All the best for 2014 to the pair of you from Gabrielle Stinson.

Brian Reid posted a note for Tom that says: Hi Sherry.
I had my mitral valve repaired by Dr. Bolling on April 13th of this year. I am 43 years old and had severe mitral valve prolapse. I actually took my tests and info to U of M as I only live 1 hour from there. After meeting him I had no doubt he was the one I would trust to do my surgery. He was very open with me saying that I needed it repaired very soon. It is to bad you do not live closer for a in person visit with Dr. Bolling. The care I received from him and his staff was incredible! 8 months after surgery now and I am doing great. I was back to work full time without restrictions in 6 weeks. You cannot go wrong with either surgeon in my opinion, I have heard a lot of great things about the Cleveland clinic and their surgeons.

Rest assured if you end up going with Dr. Bolling you will be in Great hands, he is truly incredible and confident in what he does. I wish you the best and if you have any questions let me know. I only posted a couple of journals on here. I had Dr. Bolling perform the surgery using the thoracic approach where they go in from the right side instead of the chest.

Deb Ziegler posted a note for Tom that says: Wow......you guys are quick! It took me months to do all that research and make a decision. You guys did it in a few days!
I think you will be very happy with Dr. Gillinov and CCF. Dr. Gillinov is a genuinely nice human being in addition to being a great surgeon. He will answer all of your questions, AND he will give you his cell phone number in case you think of more. He makes himself very accessible.
CCF is an amazing place too.....every time I go there, I am in awe of how well it is run. If every hospital in the U.S. We're modeled after that place, our health care system would be a lot better off.

I hope you are able to get on the schedule soon because waiting truly is the worst part!
Godspeed and good luck!

DVB posted a note for Tom that says: Hi Tom & Sherry.

You guys are off to a great start. Successful MV repair can be a 99% sure thing if you act before serious symptoms arise and manage your risks.

Absolutely surgeon skill, which is based on # of repairs per year, is the number one predictor of success. It pays to go with the most skilled surgeon you can find. In an emergency situation you can't be choosey - but when you have time to plan and prepare you can (and should) do the most you can to tilt the odds even more in your favor.

Regarding echos. Insist that the echo cardiologist give you numerical measurements. Otherwise it is hard to compare one to the next, and it is hard to place yourself in the proper cohort for diagnostics and treatment options, which is useful for your decision-making. See my journal entry from December 26, 2012 titled "The number you should know" for info regarding the one most key diagnostic number, the "Effective Regurgitant Orifice" area, or ERO. This number tells you better than any other how severe your regurgitation is and how urgently surgery is needed. And what is likely to happen how fast if you delay.

Another thing about echos. They are so sensitive that they will almost always show some backflow / regurgitation. That is because some back pressure is needed to close each valve, and before it is fully closed some blood does flow backward. So don't be overly worried when trace (or even mild) regurgitation is noted for your other valves. And when a chamber dilates (enlarges), it can stretch nearby valves open a bit so they are regurgitant. Successful repair will lead to cardiac remodeling which means a return to normal size. That often "fixes" the other valves as the mechanical stresses on them are reduced. But yeah, severe MV regurgitation needs to be repaired to return to cardiac health.

In fact, MV repair when successful (which you can arrange to be 99% likely) fully restores normal lifespan.

Thanks for checking out my journal. I'm glad you found it useful. Your posts have excellent information in them - especially regarding surgeon skill. This is a hugely important aspect of treating valve disease and yet many patients just bop over to their community hospital when they could reduce their odds of a poor outcome by a factor of three or so by going to a reference center (center of excellence).

Bravo to you both for facing this squarely and getting educated so you can make the best decisions you can. And thank you for enriching this community with your journal.

Keep the beat...

Deb Ziegler posted a note for Tom that says: Sherry/Tom,

After re-reading your last post, I realized your stats are very similar to what mine were before my surgery. I had three leaky valves when first diagnosed……a severely leaky/prolapsed mitral valve, a moderately leaky tricuspid valve and a mild to moderately leaky aortic valve. I also had a couple arteries that were 40% blocked. So, I can tell you what Dr. Gillinov told me when I first met with him. He said he was 97% sure he could repair my mitral and tricuspid valves (which he did), and he would leave the aortic valve alone. Said it wasn't bad enough to do anything with, and aortic valves don't deteriorate at the same rate as the others. He said he doubted that it would ever be a problem down the road. That was a little disconcerting, but three other cardiologists agreed, so I decided not to worry about it. He also said once the mitral valve deteriorates to a certain point, it begins putting pressure on the tricuspid valve, and then that begins to deteriorate. I asked if it also puts pressure on the aortic valve, and he said no. I was not a candidate for robotic surgery because I had more than one valve that needed repairing. I did have a mini sternotomy, and I was grateful for that. I also had a slightly enlarged left ventricle before surgery and increased lung pressures. Both are now normal. I still have a lot palpitations and some a-fib
"runs", but both seem to be controlled by the low dose beta blocker I am on. Dr. Gillinov and Dr. Griffin (my cardiologist at Cleveland) did not seem at all concerned about my blocked arteries. Basically told me to eat better and exercise more, which I have done. I wish I had asked about having the maze procedure done, but I must have been in denial that there could be even more that needed to be done. I didn't ask, and it wasn't mentioned. I was on the by-pass machine for a little under two hours. The whole surgery took about 51/2 hours.

While doing my research, I read that 80% of valve surgery patients have some sort of complication afterward. That is a huge number, and it scared the heck out of me, I came to realize that most all of those complications are common and treatable. That is one reason to go to a major heart hospital though……they have seen just about every complication imaginable and know how to treat it. The care at CCF was outstanding, as I'm sure it is at other major valve surgery centers. I had my share of complications, but they were all handled immediately.
I did ask Dr. Gillinov how many REPAIRS he did each year, and he said 300 to 400.
That's a lot, and I felt totally confident after talking to him (I was still scared though:) The only real complaint I have now (two years later) is that I don't feel well when I go to altitude. I'm not sure why, and neither are my doctors. I never had a problem at altitude before surgery.
I also have very low blood pressure since my surgery, although it doesn't seem to be a problem. Not sure if you wanted to know all this, but it might help to sort things out as you do your research. Let me know if you have any questions……I will be happy to help in whatever way I can.
You will be in my thoughts and prayers in the days ahead…..take care.

Deb Ziegler posted a note for Tom that says: Traveling for surgery is pretty overwhelming, but it isn't too bad in actuality. It's better to feel confident in your surgeon than worry about travel logistics.

One other thing you might want to ask your surgeon about (when you pick one!) is doing a maze procedure in addition to the valve repair. I had a lot of palpitations before surgery and some a fib afterward, and they continued after surgery. I have learned since that people with severely leaking mitral valves often have rhythm problems, and the surgery doesn't always fix them. The heart has it's own electrical system, and apparently the regurgitation from the mitral valve interferes with the conductivity and causes rhythm problems.
I'm probably not explaining that right, but I think it is something you might want to ask about. I wish I had! I'm sue you don't need another thing to think about, but it is better to be informed.
You will both feel a lot better after you find a surgeon, and it shouldn't be a problem to find one in California. Cleveland Clinic will gladly look over your husbands records and give you an evaluation. I had that done, and it took about three weeks once they received my records. (I live in Wisconsin). You can also ask the docs at Cleveland to recommend a good surgeon in your area.
I know how overwhelmed you are both feeling right now……been there, done that. You will eventually get the answers you need to move forward, and things will fall into place. It is an amazing journey, and one we never thought we'd have to make. Hang in there and stay strong!
God Bless,

Jim Jones posted a note for Tom that says: That is terrific. Best of success in your search!

deb Ziegler posted a note for Tom that says: Welcome to the heart valve journals! They will be a great source of information, and support for your husband's upcoming valve surgery. While everyone has a different story, we all face the same fears and challenges. This is a great place to vent, ask questions and realize you are not alone.

Since you seem to be very research oriented, I would highly suggest you read Dave Van Buren's journal on this site. He has done extensive research and has shared it on his journal. Be sure to start at the beginning of his journal. There is a lot of info to learn, and his journal really helps sort through it all.

There are many good surgeons out there, but the really great ones often have a wait time of two months or more, so if you are looking for surgery early next year, don't be alarmed if you have to wait a little while to get on the schedule. I had Dr. Gillinov at Cleveland Clinic, and he was booked out 2 1/2 months when I scheduled my surgery. Of course, if your husband's valve needs immediate attention, they will make sure he gets it as soon as possible.
The process is long and anxiety filled, but it is doable, and you will get through it. The waiting is truly the worst part. I didn't believe that until after my surgery, but it really is true!

Godspeed and good luck!

Jim Jones posted a note for Tom that says: Sherry and Tom
Welcome. You have done a wonderful job educatiing yourselves. I am sure you will continue with a very deliberative process before you make your decision.

I suggest that you may enjoy reading my journal. On 11/05 Dr David Adams did my mitral valve repair at Mt. Sinai. I had a very complex and difficult repair (8-9 on a scale of 10). It is a Barlow's valve which required a very skilled surgeon. I have been told that there are only about 3 other mitral valve surgeons in the US that can do complex mitral valve repairs at the skill level of Dr. Adams. After 5 weeks of recovery I continue to do well with no complications.

Best of success as you make your selection. For sure, complex repairs are best handled by the super surgeons in reference centers in my opinion. That is where annual volumes for a surgeon really matter.

Carol Jackson posted a note for Tom that says: Sherry,
Wow! You have done your homework. That is great. I also did my homework. I had a different heart condition then your husband. You can read my journal if you want. I had an ascending aortic aneurysm and bicuspid aortic valve. I did my homework for 5 years until I had surgery Oct. 8. It is so true that the number of surgeries a surgeon does is so important. I found my surgeon at Mayo- Rochester, MN who did my particular type of surgery MWF one week and TTH the next week(usually 1-2 surgeries per day)! Continue to do your homework and do a lot of praying. You will find the right surgeon!