Kathy's Journal

Leroy Fernandez  congrats!!! It gets easier and better really fast. Just keep moving. Don't ever just wait for it to happen. Good Luck

Thomas Brusstar  Great! Day 1 is rough, Day 2 was weak but better, and starting Day 3 I feel like that was a nice upward curve every day.

Dan Vechiola  Great job Kathy. Thanks for the update! Take it one day at a time , think positive and keep grinding!

Susan Lynn  Kathy - scheduling surgery certainly creates a rush of mixed emotions. However, by the time 9/4 is here, you'll be ready to move forward and put surgery in the rear view mirror. You're going to be just fine!

Susan Lynn  Some companies limit where you can go. Others make it more expensive for you if you go out of the network. Yet, others, do not have restrictions. Definitely something you need to find out, though. Good luck!

Anna Jones  Hi Kathy Sansone, my insurance company limited where I could go and the number of surgeons I could consult. I had wanted to go to Florida and I had to fight the insurance company for permission. I told them that I needed a surgeon who was very qualified and experienced in order to have my valve repaired instead of replaced and that this would save the insurance company from having to pay for a second surgery later. That seems to have worked, although after all of that, the surgeon was a jerk and let me know he wasn't really interested in doing my surgery.

I wound up going to a very experienced surgeon at a hospital rated 16th in the Nation that was happily covered by my insurance, and the surgeon was excited to do my surgery. He did repair my valve.

Sometimes I think the Lord pushes us in the direction he wants us to go.

Sending prayers and best wishes.

Bill Gillam  Kathy, call Duke and give then your insurance information. They will likely check it out for you by calling to verify. You are talking about a 150 mile trip to see a specialist and while some insurance companies look for an excuse to deny, I would be surprised if you were denied. They should be able to verify your insurance coverage and also check the rules on referrals. I'm on Medicare so they take that along with a supplement to cover all of it. Start by calling 919-416-3853. That's the heart center. Then ask for finance or ask how you can verify insurance. It's also on their website. Hope this helps.

Bill Gillam  Go here and then hit the drop down menu under insurance

https://www.dukehealth.org/find-doctors-physicians/?m1=surgeon

Gil Solomon  Kathy: I have been a medical director at health plans for the last 15 years and can help you out if you send me details about what kind of plan you have, who specifically denied this, and what the insurance company name is CaliforniaMD@aol.com. I tell people, when they ask me if I like working for the insurance, that when you take a bunch of well-intentioned people and put them in front of a computer with rules, they will make decisions about medical care with the click of the key that they would never do if they were face-to-face with the person.
The “insurance company” is not a monolithic entity. A group of people in plan design try and figure out how to offer a competitive low cost product. They have no clinical background, but they do have relationships with various hospital networks, and the ability to negotiate prices. They contract for the most common type of medical care and cannot foresee all the exceptions. This establishes the network design that allows only certain hospitals, but the individual decisions, such as your surgery, are usually left to a clinician (in most states). If it is a denial, it goes to a nurse or a physician, many of whom have decided that clinical practice was too much so the insurance work is the alternative. Many of whom are very experienced clinicians but moving out of their clinical career to either sit behind a desk or work from home doing reviews on a computer. They are given the network rules, but usually not trained in the one-off kinds of situations like mitral valve repair, and the capability of various institutions. The nurse may have been an OB nurse all her career, the physician may have been an ophthalmologist and they don’t know about cardiac surgery. They are clinicians, so they are also not well trained in insurance law and insurance administration. The result is that they review your request for out of network surgery, apply the rules, and click a button and send a letter, which you received. The other point to mention is that they are often time crunched and don’t have access to the capabilities of various specialists such as cardiac surgeons. They would not know who can and can’t do a repair. There is an appeal process for the decision, with the ultimate appeal going to the state regulators for the insurance product. As I said, I can help you through that, but it is a little bit more complex than the posts previous to this have indicated.

Jim Harvey   Hi Kathy, I'd answer yes to the question. I'm in a medical plan (through ACA) where the only plan available to me limits payments to me when I go outside the network, and this year that changed to ANY doctor or hospital not part of their health care system. I am able to petition for an exception to that, but the explanation was they have the resources, so have to use theirs.

I ended up talking to others about my surgeon and was very comfortable with him as it turns out. And the hospital was EXCELLENT by any count of comparison to some of the horror stories that have been shared here.

Wherever you go, ask about the TEAM doing the surgery, not just the surgeon. That can be as important as how many surgeries the doc has done when you are looking at techs, gas passers and the like.

Good luck!

Richard Puckett  I would recommend to always choose a "Preferred Provider" policy. This generally allows you to go where your want to go, possibly with higher deductibles. The Cleveland Clinic, where I had my surgery, accepted my insurance with the normal deductibles since they were listed as a preferred provider. Had the Cleveland Clinic not been a preferred provider, I still could have gone there, but with a higher deductible.

Bill Gillam  Adam's book has a section on this so that's one resource. I have "interviewed" two surgeons in the last week. I found it difficult to find good info on the internet. I do not trust health grades at all. I would say the two questions I found most useful were to ask how many repairs the surgeon has done as well as how many repairs ended up being replacements. You want a very experienced surgeon IMO. You can ask similar questions about tge hospital and the "team"

Lastly, I asked for a frank explanation of risks. Hope that helps.

Susan Lynn  Kathy - I, too, felt pretty good and my murmur could barely be detected when I was at rest. However, under a small amount of exertion, the shortness of breath and the regurgitation were very obvious.
Good luck with your TEE. You're going to br fine.

Kirk Bepler  Same here, when the doctor told me it was time to look into surgery. My first thought was why, I feel good... Good luck with your TEE.

Rita Savelis  I didn't know what the doctor meant when asking if I had symptoms.... until one day (years later) I got them and finally knew what he was talking about. But some never feel them at all. It's very individual, and has little to do with how severe you might be.

Judy Shaw  My cardiologist ask me about my symptoms since I was at moderate to severe. I didn't think I was having any until he started questioning me. Then I started putting it together. He told me the change is gradual over time so that we don't notice. We may put the symptoms off to other reasons.

Rose Madura  I think must of us had some symptoms but chalked them up to the aging process, I know I did. We don't want to admit we are closer to needing surgery so we say to ourselves, "The reason I got so tired on that bike ride is because I'm getting older,"

Chris Purvis  It’s tough when you feel good. I was more than likely sever stenosis of my aortic valve for 2 years. Heck I even set some PR’s at the gym this year and then May 1st boom=shortness of breath. Everything will work out the right way and you’ll do great.

Dan Vechiola  Kathy I feel the same as you. I have a bicuspid aortic valve with aortic stenosis and I think I feel great but is this a new great? Have I slowly slipped to 60% as well and has it become the new normal? If my valve is replaced does my feeling great have upside? I am very curious as well to get this question answered!

Susan Killian  I had severe regurg too and thought I was in excellent shape. I am 64 but was walking 10,000 steps at least 3 times a week. I am now 12 weeks post op from OHS with full sternotomy and repair of mitral valve with annuloplasy ring and 8 new chords. I now notice the difference and can walk faster and am not as short of breath. And I know I am not 100% yet, Can't wait to see what levels this will take me too!

Jennifer John  That symptom question threw me, too. I had one major episode of A-fib last fall, but that’s it. Maybe I was more tired than usual. But I chalked it up to normal fatigue and, well, aging. (I’m 58.) Yet all initial tests and my TEE showed severe MV regurgitation in need of repair. The best way it was explained to me is this: You don’t know what you don’t know. And you may be surprised at how much better you feel post-surgery once you’re all healed. Mine was 5/31, and I’m sure hoping they’re right!❤️

Don L  I am 51 and active, had Robotic repair 14 weeks ago. No symptoms prior to surgery(although as I compare to 'now', I think I fatigued easier prior to surgery).

Kathy Sansone  All good to know! The points about aging make total sense. I had my TEE today and will talk to my doctor about results next week.

Susan Lynn  Welcome, Kathy!

Been there. Done that. Got the heart- shaped pillow. I had MV regurgitation, some shortness of breath with exertion, but no LV enlargement or afib. I opted for surgery sooner rather than later.

There are many mitral valve brothers and sisters on this site. Please feel free to post any questions you have and you'll receive wonderful information from this community. We'll be with you the whole way!

Marianne Charters  See my story! I’m now 3 weeks post mitral valve repair. If I had waited much longer it would not have been repairable. So I’m glad I had it done. In a hurry😬😜

Dan Marcantel  Yep I had no symptoms at all prior to my surgery. I was a grade 4 which is why I could no longer wait. DO you know what grade? Did they tell you 2, 3, 4?
Better to get it fixed it will only progress it does not reverse don't let anyone tell you other wise.

Adam Pick  Kathy, there have been many patients in our community who were referred to surgery with no real symptoms. Please stay on top of it. Also, here's a recent video I filmed about timing mitral valve surgery with Dr. Marc Gillinov, the chairman of cardiac surgery at the Cleveland Clinic. https://www.heart-valve-surgery.com/heart-surgery-blog/2015/11/03/timing-mitral-valve-repair/

Helen Daw  4 months post op and had no symptoms before surgery. I knew about my Mitral valve almost my whole life.

Kathy Sansone  Wow this community is a blessing thank you to all who have commented here! I was diagnosed MVP when I was in my teens. I am now 40. Regurgitation started soon after diagnosis but was mild. I dropped the ball on my echocardiograms in my early 30's because they were always mild. After 7 years now I have just started up again for the last 6 months. Grade of severity 3.5-4. the latest report states severesevere regurgi tracing the regurg up to the pulmonary veins. Left atrial enlargement has been noted. LV ejection fraction is 65%. I don't know anyone who has gone through this and I'm happy I found this community and I'm just looking to discuss this with other people who have been in the same situation. Thank you all so much for your help and support. I have expressed to my cardiologists that I am scared about waiting to become symptomatic, and the damage that will occur. He has scheduled me for a TEE in a week, but I'm not sure what else that would show?

Jennifer John  Kathy, I’m 3 weeks post-op today. (Pls see my journal posts for more details since this heart valve journey began.)
The gist: I had a mitral valve prolapse and mild heart murmur since childhood. No idea I had a leaky MV. Only symptom was an A-Fib episode last Nov. that was caught by my amazing internist at my annual physical. (I had no idea it was even happening.)
After numerous tests, I was diagnosed with severe MV regurgitation. Still no real symptoms. (Maybe a little more tired than usual.) However, my cardiologist and surgeon advised me to get it repaired now at age 58 instead of waiting for more symptoms and possible heart damage.
Surgery was 5/31 and also included the Maze procedure to further hinder any A-Fib. It’s tough to have surgery when you’re feeling fine. But my docs have assured me I’ll feel better than ever once I’m all recuperated — not even realizing how not-so-great I actually felt before. I am grateful.
Everyone’s different. You have to do what’s best for you.❤️💪🏼

Kathy Blank  Kathy- I had absolutely NO symptoms but did so much research and felt strongly there is no benefit for me to wait too long before surgery- I am now 16 months since my robotic mitral valve repair and I am doing GREAT! I urge you to consult with a surgeon early in the process. They can give you the BEST information and can help save you from unnecessary testing. An experienced surgeon is VERY important for Mitral Valve surgery and I wish you the very best!

Mary Woods  Hi Kathy, yes I am at the same stage as you - almost severe. I suspect I am getting a bit more breathless and a little more chest pain, but I have other conditions that could cause these symptoms. I definitely get more palpitations. I am just waiting for results of my last echo.
It's very hard to put yourself through a really tough surgery when you don't feel particularly unwell. But hanging round waiting for things to get worse is a pretty unattractive proposition as well. Some days I would just like to get it over with!
Good luck.

Carmel Robertson  I was in the same position as you before my surgery and opted to have it done sooner than later. I saw four doctors, one cardiologist and three cardio thoracic surgeons before I made my decision. I couldn’t see the point in waiting when my heart was only going to get worse. I had it done robotically so the recovery was relatively fast. Four and half months later, I am in Spain doing lots of walking and up hills easily. All the best with your heart journey.

Lisa Ferguson  I'll join the chorus of many who had surgery before we really felt bad. I share the same story as you do almost exactly. You can live with the early stages of heart failure for a while and not know it. I think living with it now that you know and worrying is much worse than going through the surgery. I encourage you to ask lots of questions and get set on expectations from your surgeon. The TEE will tell the doctors a lot. It's the only way to really see your valve before surgery and it's an important exam. Docs can be much more definitive about what needs to happen (and when) after at TEE. Best of luck! Glad to chat anytime!

Rita Savelis  Not everyone has symptoms, but now that your problem has been detected, cardiologists/surgeons are staying on top of your case, and I imagine you are having regular checkups to evaluate your heart valves. Valves can stay at the same level for a long time, or a shorter time. There is no definite answer as to when to have surgery. Often surgeons will leave the decision up to you, since it is not a precise one.
To be honest, I would have preferred to have more pre-surgery time (I had 6 years) than post-time, but I know I'm in the minority. Take care Kathy.

Emily Rowley  Welcome to the supportive community Kathy. I too had severe mitral regurgitation but with bad symptoms. Wow you don't experience any shortness of breath or tiredness or heart palpitations? I would think having surgery sooner rather than later would best as you may notice a difference afterwards and prevent future problems. You need to feel ready within yourself too. Please ask any questions you have, that's what we are hear for 💞 Many blessings, Em.

Susan Killian  I had severe mitral regurgitation with an eccentric jet but had no symptoms, or at least I did not think I had. But my stress echo was able to point out I was more symptomatic than I thought, I was just compensating. I am 64 and was walking 10,000 steps a day, but slowly they pointed out.
They let me know it was only a matter of time before I would have started to have more symptoms and and It could have had ruptured chords and been in big trouble quickly.
I am now 10 weeks post and feeling good. I am starting to see the difference. I am cardiac rehab but progressing quickly. I had full open heart with mitral valve repair, an annuplasty ring and 8 new chords. If they say you need it do not hesitate.

Kathy Sansone  Thanks for the support everyone, it's been so reassuring and comforting to read all of these comments and be able to communicate with others going through similar! One other question I had- I noticed that most people here who had only mitral repair all had open heart surgery? My doctor discussed with me they would do a minimally invasive repair through the rib cage. Are there any reasons why others here did not receive the same? Thank you.

Susan Lynn  Kathy - I had the mini-thoracotomy through my right rib cage and I've wondered the same thing. For me, it was virtually painless and the recovery was easy.

Carmel Robertson  I had a robotic repair through the right ribs. So far my surgery has been very successful. However, I am only five months post surgery. Would be interesting to hear from people who have had minimally invasive surgery a few years out.

Don L  Hi Kathy, I had Robotic mitral valve repair, which is minimally invasive through the right side. I am 3 1/2 months post op and like Carmel/Kathy above, so far I am extremely pleased with the results and relatively quick recovery. From what I have learned "open heart" or Sternotomy is patient/surgeon dependent on what needs to be done and respective risks, as well as the specific Surgeon's preferred method or expertise. Since other than Mitral Valve Regurgitation(MVP Barlow valve), I was otherwise healthy, Robotic was an option. Kathy Blank(above) and I used the same surgeon in the Dallas area.