Jackie's Journal

Klara Čičić  Oh, it is hard decision that awaits me, too. I am sorry you have to go through it. My deciding would definitely include more opinions. If you find excellent surgeon experienced in re-repairing, and he thinks there is high chance for a repair, then maybe better repair than waiting. It is such a hard decision with no right anwser. Search for more opinions, do the scientific research and follow your gut feeling in the end. Please keep us updated! Good luck

Jackie Comp  Thank you Klara.  It’s tough and I’m sorry you will have the same dilemma. My surgeon will try to do the repair again either way - he is excellent.  Apparently it won’t change the success if I wait.  It seems to make sense to wait until I have no choice but to do the surgery.  I will continue to get more opinions. 🙏

Susan Lynn  Jackie - I'm sorry to read you're facing another surgery. If your regurgitation is severe, I suspect symptoms and/or the impact to your heart is inevitable. I agree with Klara about getting multiple opinions. I'd want to know from someone who is objective why your original repair failed so soon. I'm sure you feel loyal to your surgeon, but there are surgeons who specialize in re-repairs. It's worth seeking one or two out for consultations. Good luck - please keep us posted.

Jackie Comp  Thanks Susan. My surgeon is with Mt Sinai and considered one of the best but apparently my repair was "complex". I will continue to research and seek out add'l opinions.

Robert Miller  I was in a similar situation. Had surgery last year. Then 3 months later I had a leakage again. I had another check up 3 months later and was told this has to be taken care of. Unlike the first time it wasn't urgent but they said probably within a year. So for me the decision was relatively easy. Even if I could have pushed it out 2 years I wanted to take care of it quickly for two reasons. One is that before the first surgery my heart was a big balloon. My cardiologist thought it was probably something that happened pretty quickly. I didn't want to take the risk for this to happen again so I wanted to take care of it sooner than later. The second reason was insurance. I was already maxed out on my deductibles so having the surgery in the same (last) year did not incur any additional cost. 

The other consideration for you is, as you mentioned, how long it will hold up. I was told by two surgeons that a good repair should last for a lifetime. So one question to ask is why they think the first surgery only lasted 7 years. Check the operative report from your first surgery and see if any complications were mentioned. That can possibly give you an indication of the likelihood that a repair is possible again. Usually the surgeons can't really assess it with certainty until they opened you up and take a look but if there were already complications then based on those complications they might be able to better assess it together with the TEE.


Now, in any case you have to decide what you want to do if a repair is necessary. You will have to decide between a mechanical valve and a tissue valve. A mechanical valve should usually hold for a lifetime. It seems you already did think about this and decided for a tissue valve. Then of course you might need another surgery later. But a first tissue valve should last about 10 years (depends a bit on your age) and then they can insert a second tissue valve without open heart surgery (though Dr. Woo at Stanford told me this is a relatively new thing and FDA might disallow it in the future. I am skeptical about what he said but I am not a heart surgeon/researcher). When that second tissue valve goes bad you most likely will need a third open heart surgery. Scaring of the heart from the first two surgeries might also become a concern. Something you should discuss with your surgeon. At the end this becomes a bit a calculation about how old you are and life expectancy (other health issues, etc). 

Btw, before my second surgery I got 3 opinions and for the second surgery I chose a different surgeon. Plus the first surgeon billed for the second consultation 6 months after the first surgery. You would think that when the first surgery didn't work out that he would do a free consultation. Anyways, when I saw the charge to the insurance company I already made my decision. 

Jackie Comp  Hi Robert - thanks for your thorough response. I'm so sorry to hear your leak returned so quickly. I'm sure that was devastating.

Regarding my first repair only lasting 7 years, apparently I had a "complex" repair. Also my heart was swollen and my surgeon explained that sometimes when the heart changes size (goes back to normal) it can affect the valve. Seems I have some calcification, too. For the 2nd surgery, a tissue vs mechanical valve was not discussed with me -- perhaps Mt Sinai only does tissue -- i will ask them. My surgeon did say that if I get a tissue valve and I need a 3rd surgery in the future, the 3rd replacement w/o open heart is not quite there yet. He is hoping he can do a "durable repair" and not need to do a replace.

Regarding the 3 opinions for your 2nd surgery -- did you need to ask your primary surgeon to forward them any information? I feel awkward for my surgeon to know I'm seeking other opinions. I do trust him, but I suppose it's the prudent thing to do. I do have the written report of my TEE (just not the CD).

Thanks again for sharing your experience -- very much appreciated! - Jackie

Robert Miller  Before my first surgery my heart was a big 'balloon' (that's what my cardiologist called it and he showed me the before and after x-rays). After the first surgery my heart shrank a lot (pretty much normal size) which according to my first surgeon is why the first surgery failed (the cords he put in were too long after the heart shrunk). He is a very experienced surgeon so I am not sure why he couldn't/didn't account for that. 

In any case, do NOT feel bad about asking for the operative report. It's a medical record and you are entitled to get that including all ultrasounds, bloodwork, etc. Just call the office and most likely an assistant will answer it and get you all that information. Your surgeon probably won't even know you asked for that information and if he does then you simply say you would like to take a look at it. You don't need to tell him you are getting a second/third/fourth opinion which you really should do. The other surgeon(s) you are going to talk to might read the report or they might not. But even if they don't, it helps YOU to understand what was going on and it helps you to ask questions that you otherwise might not have thought of. I highly recommend to get this operative report. 

I was told something similar regarding the tissue valve. Basically, the first one is open heart surgery. For the second one they can put a new tissue valve over the existing one (unless Dr. Woo is right and FDA might decide to not allow this anymore). I was told potentially a second tissue valve could be inserted without open heart surgery (so that would be 3 tissue valves). But that decreases the opening and with that the blood flow. Supposedly they would size the first valve accordingly but by the time I would have needed a 3rd valve I was old enough that I probably didn't need the blood flow I need now for the activities I do now (skiing, strenuous hikes, etc). 

It's interesting that you were not told about a mechanical valve. Maybe it has to do with age or with your activities. Still, I would have expected that all options are putting out there. The general "rule" is that below 50 you get a mechanical valve. Older than 65 you get a tissue valve. Between is the gray area. But from what I gathered even many people that are <50 years decide on tissue valve because they don't want to deal with the blood thinner (usually Warfarin) which can be an issue for bleeding, having to check your blood (INR) every two months or so (can be done at home but many people prefer to go to a lab), have a somewhat consistent diet (especially greens). 

Jackie Comp  More helpful info and insights - thanks Robert!

I'll research other surgeons for another opinion.  I can find out what they want to see -- e.g. operative report, recent TEE, etc.  I will also do more research on the options although I'm really hoping/praying I can get a repair again. I'm very active (advanced yoga daily, long power walks/hikes, etc).  If repair isn't an option, at 62 I guess I fall into that "middle" category of tissue vs mechanical although being on blood thinner would not be my preference (even though I eat plenty of greens!).  And the thought of 2 more surgeries is unsettling.  This is where acceptance comes in ....

Btw - was your 2nd surgery a repair again? 

Thanks again for your help!  

Best - Jackie

Robert Miller  My second surgery was a repair again. The surgeon told me before the surgery that based on what he sees he thinks there is about a 2/3 chance he can fix it. He did quite a bit more than what was done during the first surgery so I am hopeful it worked out this time. 

The surgeon for the second opinion might not ask for the operative report. But I would get it anyways for your own education and possibly coming up with additional questions you want to ask. I don't know what hospital you are using but many these days have everything in electronic form. There might actually be a law that requires that. Anyways, short of imaging (CT scan, echo, TEE) I can get everything from the hospitals website (incl. x-rays). Other modalities I get on a DVD. 

I eat a lot of (Chinese) greens as well. It actually works against the Warfarin (blood thinner) medicine. It's the vitamin K in those vegetables that do that. It's perfectly fine to eat those vegetables, though. You just have to keep it more or less steady. That's why you need to check the INR level every other months so you can adjust the medicine. Yoga, power walks, hikes, etc is all ok. Blood thinners are more of a concern when you work with power tools where you can seriously cut yourself, if you do extreme sports like climbing, competitive skiing, etc. Or if you have anything that could make you prone to internal bleeding. Nothing of that seems to apply to you plus that is only if you choose a mechanical valve. At 62 I probably would go for a tissue valve but REALLY discuss with your surgeon. Don't listen to some guy on the internet...

On another note, do you know if you had your "heart appendix" removed? I always thought that this is standard procedure during an open heart surgery but apparently there are people that didn't have this done. Based on what I was told, doctors don't really know if that appendix has any function (probably not). However, it is a source where blood clots can form, especially if you also have Afib. There is medicine for Afib (not exactly sure what it is doing) but blood thinner also helps. But if you have the appendix removed you might be able to not use blood thinner to avoid risks of blood clots due to Afib. You should see if it was removed when looking at the operative report. But in any case, I would discuss this with your surgeon.

Jackie Comp  Hi Robert - sorry for the slow acknowledgement of your response. Thanks again for taking the time to share your thoughts. I am not sure about the heart appendix - have never heard of that. I do take a baby aspirin every day.

I'm glad to hear your second surgery was a repair - I'm really hoping for the same. Still doing more research and will get my reports etc (had to take a break -- can be overwhelming!).

Next echo is June so that will inform on how long I can wait. Thanks again

Robert Miller  For the heart it's actually called appendage (I wrote appendix). Here is a link https://www.svhhearthealth.com.au/procedures/procedures-treatments/left-atrial-appendage-closure I had (and still have) Afib so it was obvious to remove the appendage. But I was told it's a pretty common to do this even without Afib since they heart is already open and the appendage doesn't have any known function. Personally, I would opt for having this done even without Afib but ultimately that's up to you.