Jeffrey's Journal

J Alexander Lassally  Hi !  You posted something slightly contradictory regarding your mitral... torn cords can be a big deal, but moderate to severe is a comfortable place  to be as you wait for decisions and a game plan.  Just mentioning what popped out to me. 
Keep in mind the robot is also a thoracotomy - same approach, just with the device.... Non robotic thoracotomy surgeons like to "sell hard" their approach. Get other consults - including whether sternotomy makes sense... You mention other valves, so they may need tune ups.  
Insurance is complex... You will have to advocate and push hard for that you want. Good luck ! 

Richard Munson  I had mini invasive without the robot and they replaced some cords with goretex i believe. They also added an annular ring and did maze procedure. So far so good i think. My next echo is in march. 

Jeffrey Sweatlock  I am glad you are doing well after your repair with Dr. Gillinov. How was that process of getting a consultation, surgery, and recovery? Did it take long to get onto the schedule? Do you need to go back to Cleveland for followup? I've been doing way too much research - Thanks Adam! - and do hope I am a robotic candidate and can convince the insurance company that I need a Mitral Reference Center. The cardiologist's initial diagnosis a vegetation from endocarditis, but I was never sick (especially that severely and if I was, I would have had a mechanical valve already). The surgeon's experience and closer review of my TEE showed a flail chord as the culprit for my MR. 

Jeffrey Sweatlock  Richard: I am glad you were able to get such excellent care at such a storied institution and are doing well. Whether a resection or chord repair is top question. I think a ring is standard to prevent further dilation. Do you require anti-coagulation? 

George Gardopee  Jeffrey: my story sounds like yours, except I did have endocarditis. Mitral regurgitation, flail leaflet, broken chords. My local surgeon wanted to replace but this site convinced me to look for a center for repair. I too went to Gillinov 4 years ago.  I had an excellent experience. Dr Gillinov removed the diseased parts of the valve and replaced the chords.



The consult was easy; I had all my records sent to Gillinov via his practice coordinator. That included all imaging (echos, CT, EKGs). The practice coordinator you can contact will tell you what to send. I believe I forwarded my insurance info as well and they will check if your insurance will work with them. The consult was very fast (maybe a week or two after I sent everything). Scheduling can be several months - Dr Gillinov is in demand. I was on Medicare plus a very good Advantage policy that lets me go anywhere, so I was lucky in that regard. I was able to drive to Cleveland for the surgery and 1 week follow up, but others here who had to fly to Cleveland will tell you they stayed locally until the follow up appointment. Good luck!

George Gardopee  Other good choices for you (and closer to AZ) would be Dr Chikwe in the LA area and Dr Castro in the Bay Area. Both come very highly recommended for repairs (and robotic procedures, I believe, if that is important to you).

Jeffrey Sweatlock  Wow, George, I needed that. Thank you for your response. So even with endocarditis, he was able to repair your valve - amazing and fantastic. Dr. Chikwe is also on my shortlist. A highly skilled surgeon (Drs. Gillinov & Chikwe) plus a mitral reference center is at the top of my list; robotic is next. I do hope my plan will see it like we do… otherwise I am not sure I can wait 3 years to be on Medicare…

Fidel Martínez Ruiz  Hi from the other side of the pond. I´m glad to hear the good experience of George. I had the same suffering, endocarditis and as a result, damaged mitral valve and a chord broken. The surgeon here told me before surgery that she would take the decision or not to repair on the operating table itself. She took the choice of replace the valve in situ. Then I think that the best option is to choose a very good skillful surgeon you trust and let him or her to try what consider suitable with the heart on display at the very moment of the surgical act. If surgeon is good, sure that will take the best option.There ´s no point in worrying too much about choices, although yes, it´s important to have a skillful surgeon, have confidence in him/her and then, relax and let it be as Beatles song (lol). Sorry for the long message.

Richard Munson  My mitral valve was repaired and i believe a factor was that i did not allow them to kick the can down the road. Baby aspirin. 

Deena Z  I would go “bottom-up”.  Research  and select the  best surgeon for your repairs and pick the insurance plan that will cover it, such as. blue cross/ blue shield.. what is the diagnosis with the other valves you listed? 

Jeffrey Sweatlock  Fidel: Thank you for your wise words. This site & community is helping me realize that I do have choices other than the “network” the insurance and hospital system prefers for us. My hope is that I can get them onboard in a reasonable time frame. With your biologic valve, it saves you from needing high dose anticoagulation. They have been making progress on using a TAVR like device in the mitral position. By the time you will need it, it should be perfected

Fidel Martínez Ruiz  Jeffrey, thank you, hopefully TAVI be applied on mitral position as well as in aortic Valve does now. Regarding your question and  options to choose at hand and time to chose, I' m agreeing with Deena in her botton-up strategy, looking first for repairing but without pressing too much.

Jeffrey Sweatlock  Deena: I certainly have been doing a lot of surfing. You just think of so many more questions when you leave the office plus the information you find that they did not tell you.  I also have tricuspid & aortic regurgitation. I wish regular commercial insurance was an option for me, but my only choice is the marketplace state limited HMOs (Blue cross even pulled out of my county). 

Jeffrey Sweatlock  Fidel: your English is 1,000 times better than my Spanish.  I appreciate the time & effort everyone has taken to respond

Brian McCann  Jeffrey, you would be looking for what the insurance companies call a "network gap exception" where you don't have a reasonable option within the coverage area. 

I had the same situation where I needed care and the local options were not as good as an out of state option that was out of the plan. This was an ACA marketplace plan. In my case I had to initiate the request with the chosen surgeon, and his office took it from there.  I also needed the support of my cardiologist and primary care doctor. The process took several weeks and there were hurdles but it got approved and my surgery was completely covered under an ACA plan. I would be happy to give you more specifics about my process. 

Jeffrey Sweatlock  Brian: this is very encouraging that it only took you a few weeks to resolve. I too have an ACA plan. I would rather go to a Mitral Reference Center which has the team and surgeon who are doing this weekly instead of only a few times per year. Research has proven that volume makes a difference in expertise of the surgeon, the  surgical/ICU teams, and the overall success of repair & outcome. That's why Dr. Adams established the Mitral Foundation. Plus I have some AR and TR, so not so straight forward.

 I have reached out to two surgeons, so far one has contacted me. They seem to believe my cardiologist here needs to initiate but they will support the process. Are there any tactics, key words to say/use, that helped you get to "yes"? Please tell me/us more on how you won over your insurance so "easily".   I am bracing myself for the customary "Deny" and "Delay".  Otherwise, this could be around $300,000. Of course this has to happen at the end of the year. So far I am planning on the same insurance for next year. 

 By the way, I grew up in Emerson (so I know what exit you are...), but moved to Phoenix in '98. I don't miss your winters, just the fall.

THANK YOU Adam for posting my question. The information and community that you have built has been helpful beyond words. I am glad that you have continued this as a dedicated site and app because I do not do FB or other social media.