Deena Elani - Heart Valve Journal

My Journal

Update posted on...

August 14, 2020

Adam, you were excellent on the Martinez show.— articulate, informative, passionate. Thxs for representing us and the issues so well. #next.round.morning.TV!!!!

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Which Way to Go? -- Time & Hospital

Journal posted on May 28, 2020

Latest:

Held a video conferencing visit with Dr. Adams at Mount Sinai (NYC) about my mitral valve. --Have severe regurgitation and severe calcification. He recommended surgery within the next nine months. Dr. Adams was outstanding! I will be speaking with the Cleveland Clinic via video in two weeks. I know both of these hospitals and respective surgeons are top notch. Does anyone know of pros and cons in helping me decide where to go?

Also, this may be a stupid question, but is there a best time (season) to get the surgery? Summer is already booked, so it is either this Fall, Winter or early Spring. (Winter seems not ideal, given it can get really cold in Virginia and walks outside would be more limited.) This Fall is an option, just that COVID will probably still be a major issue. Spring seems far off, and thinking about this surgery for so long is not great for my mental health:) I know I am fortunate that I have the option of determining when.

Thank you for your advice!

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Herb Greenberg I'm biased because I had aortic-valve surgery at CC three months ago, going there from San Diego. I liked the fact that it is a heart hospital - that the ICU/step-downs ... Read more

Herb Greenberg I'm biased because I had aortic-valve surgery at CC three months ago, going there from San Diego. I liked the fact that it is a heart hospital - that the ICU/step-downs are cardiac-centric. As many will say, CC is a machine ... in the best of ways. The entire process was high quality. In the end, you need to trust your surgeon and pick one who focuses on your situation. Dr. Adams has a great rep, as do the CC mitral valve surgeons. I also liked the connected hotel - worked very well for my wife. But that was pre-covid, which was a world away. (Tip: The biggest complaint I had about CC was the people at the reception desks. In general, not friendly. But I'm spoiled by San Diego! Still, once you got behind the doors, even the labs, all was forgotten.)

Adam Pick Hey Deena, Great to hear you had a consult with Dr. Adams.

He is a great doctor and person who I have been fortunate to get to know over the years. ... Read more

Adam Pick Hey Deena, Great to hear you had a consult with Dr. Adams.

He is a great doctor and person who I have been fortunate to get to know over the years.

You are doing a great job doing your research. We have had many, many, many, many, many, many, many patients have successful heart valve surgery at Mount Sinai and Cleveland Clinic!!!

Phyllis Petersen I have a similar story to you. Assumed to have the heart murmur most of my life, diagnosed with regurg at 48, severe at 62. I chose to go to Cleveland Clinic ... Read more

Phyllis Petersen I have a similar story to you. Assumed to have the heart murmur most of my life, diagnosed with regurg at 48, severe at 62. I chose to go to Cleveland Clinic and have Dr. Gillinov do my surgery. I knew about him from this site and was happy that he would do my surgery. One of my considerations was having robotic surgery, which is, I believe, in both the hospitals you're considering. I, too, liked having the hotel walking distance from the hospital. It was a strangely electric atmosphere with several groups walking from the hotel to the hospital at 5:30 am for surgery. This was pre-Covid, so I was able to have a family member with me. It's a difficult choice with great surgeons in both hospitals. I liked that CC had pretty much every base covered. I didn't have any problems with reception; pretty much everyone was welcoming and efficient. I should have used their concierge more and read the huge binder they gave me. They really do have an incredible system, as well as incredible staff.

Deena Elani Herb, thanks for sharing. Well oiled is a good way of summing-up CC. That must have been a big relief every step, every day. You and your wife’s postings ... Read more

Deena Elani Herb, thanks for sharing. Well oiled is a good way of summing-up CC. That must have been a big relief every step, every day. You and your wife’s postings are really helpful, insightful. (She is an artful writer!)

Adam- yep, I really liked Dr. Adams. What I especially like was his experience with severe calcification on the mitral valve. He said he could still repair it. Please know that your video interviewing Dr. Adams (with the cardiologist from Mayo) made me definitely want to speak with him. He is genuine and a mega-talent.

Phyllis- thanks!! Our chronologies are very similar! I have severe calcification, so robotics was ruled out by Dr Adams and probably will be by CC.
I will ask CC how long the wait is for Dr. G. to perform my surgery. Heard it can be many months, unless it is urgent.

So glad Herb and Phyllis that you are doing incredibly well!! - that’s inspiring. Will update you as I move through the next step and speak w CC.

john roland I had my aortic valve replaced 2 months ago at CC. I thought they were terrific and I called it a well oiled machine. I give them 10 stars top to bottom.

Deena Elani Hi there John, so great that you are over the “hump” and healing so well. Thxs for the reassurance re: CC.! No doubt that CC is superior

Phyllis Petersen Deena, I was fortunate to not have calcification nor plaque build-up. There are minimally invasive techniques other than robotic. My echo showing severe regurg ... Read more

Phyllis Petersen Deena, I was fortunate to not have calcification nor plaque build-up. There are minimally invasive techniques other than robotic. My echo showing severe regurg was in January and I had my surgery in October. I was able to do much of my initially testing at my local hospital. My cardiologist, Dr. Janardhanan, and his assistant did an incredible job of coordinating everything with Dr. G at CC and here in Tucson.

Paola Gonnet I also had my AVR at CC, I agree with John that CC is a well oiled machine, I am doing extremely well back to normal and feeling great, I also did an extensive ... Read more

Paola Gonnet I also had my AVR at CC, I agree with John that CC is a well oiled machine, I am doing extremely well back to normal and feeling great, I also did an extensive due diligence and picked CC based on outcomes, number of surgeries/year, innovation in surgical techniques and surgeon expertise.

Update posted on...

April 2, 2020

Can anyone provide me info as to how much lead time is needed with the Cleveland Clinic to get on their patient list, If the surgery will happen within 6 to 9 months.

I contacted CC and received forms to complete re: a second opinion, but not an understanding of the process and timing.
I am debating whether to get my mitral valve surgery there or at Johns Hopkins in. Baltimore, MD or fairfax INOVA hospital in Northern VA, where I live.

Thanks much!!

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John Hannon I’ve had surgeries scheduled there twice and both scheduled within a month of communicating with them. First one my cardiologist did all the coordinating ... Read more

John Hannon I’ve had surgeries scheduled there twice and both scheduled within a month of communicating with them. First one my cardiologist did all the coordinating and all I had to do was schedule the date and show up. Second time was through the second opinion process like you’re doing. That one was more complicated to get worked out and I ended up not going there (first voicemail I listened to after coming out of surgery was from them giving me the workable surgery dates). I’d say if you have all the tests done that they ask for it’s never too early to get it to them and once they have it they’ll be very willing to work with you.

Jeff V. Deena, I had MV repair surgery at the CC by Dr. Pettersson. My experience was similar to John's... my CC cardiologist recommended that I get the repair done ... Read more

Jeff V. Deena, I had MV repair surgery at the CC by Dr. Pettersson. My experience was similar to John's... my CC cardiologist recommended that I get the repair done within the next 6 months. He organized the details with the surgeon and I was then contacted within one week by the surgeon's office to schedule. I was offered approx. six dates in a 2 - 3 month window. I arrived 3 days prior to surgery for pre-op tests and then stayed 5 days post-op. Check out my journals if you like.

Deena Elani Hi John and Jeff, I can not thank you enough for your real life info!!! So, helpful!!!

It seems the cardiologist acting as the liaison with CC is pivotal ... Read more

Deena Elani Hi John and Jeff, I can not thank you enough for your real life info!!! So, helpful!!!

It seems the cardiologist acting as the liaison with CC is pivotal (though mine prefers for me to stay at INOVA Fairfax in Northern VA), which is where he practices. I have enough time to start the second opinion process, so thanks John for explaining the difference in time, etc.

Jeff, read your journal, awesome! (Could visualize each step!).

Congrats to you both for successful surgeries and staying healthy. Must be such a relief!!!

Chris Calhoun get it done as quickly as the virus subsides - I had a stroke doing the wait and see game and it was worse than the entire heart procedure

Deena Elani That’s awful to have both occur, Chris. I was reading through your journal. I hope that your stroke rehab went well, and that your current issue can be ... Read more

Deena Elani That’s awful to have both occur, Chris. I was reading through your journal. I hope that your stroke rehab went well, and that your current issue can be resolved effectively. Get a second and third opinions, if not done yet. Looks like your surgery was performed in JAX?...