Lisa's Journal

Richard Munson  As a GERD patient i can for sure say that is probably causing a lot of your hoarsness. The breathing tube issue probably has run its course after 3 weeks. Assume you must take omeprozole  or something for heartburn but sleeping in a semi raised position and not eating before bed time helps me. Also learned not to pig out at supper. When it hits i cough a lot and hoarseness follows. I find a glass of milk helps ease the coughing. Good luck. 

Grace Mason   My throat was extremely sore and I couldn't talk without coughing for 4 weeks post surgery. I used numbing lozenges and limited my speech and it eventually returned to normal after about 6 weeks.

Jill Porter  Mentally and physically it can take a while to recover. Give yourself some time and I'm sure you will start feeling much better in a few weeks.

Richard Munson  I did the same thing regards an extra day. They were not happy due to open bed syndrome but i knew i was not quite ready. You above all else know your body. The following day i knew i was ready. 

Rita Savelis  Thanks for sharing. I hear you. I certainly did not feel exuberant after heart surgery and wonder if those who say they felt great are exaggerating the truth. Heart surgery is a big deal. The surgery itself is the easiest part (for patients). After that the heart and soul need time to recover. You've been through a lot. Staying longer at hospital is good. I was there for weeks. Every patient has a singular experience, every heart is different, every recovery is different. Take care. Go easy on yourself. Give yourself time to heal. You will feel exuberant one day but maybe not so soon after surgery.

Deena Z  I was still in shock, while in the hospital.  Had not expected for it to be as challenging as it was. (sternum cut.).  It took weeks post- discharge to have my emotions settle down.  What helped me the most, besides this website, was going to cardiac rehab.  There were other heart warriors there, each with a common thread with me, and I could physically push myself back to feeling somewhat normal without fear.  Give yourself a bit of time.  

Anna Rakowicz  Lisa, extra time being taken care of in hospital can’t hurt. Do they think the heart can go back to normal size soon? 

Lisa Silverman  Thanks all. My doc predicts that, within a few years, my heart will be back to its pre regurgitation size.
I appreciate the fellowship and community. I’m experiencing loads of anxiety and done unwanted side effects from new meds and I’m having a hard time surrendering to my recovery, to the pace and process. I feel very vulnerable and just very shook by the whole thing.

Rita Savelis  Thank you for your honesty Lisa. It's hard. There is a lot to process. Talking about it can help.  One day at a time. Don't compare your recovery to any one else's. Your heart has been through a lot. Take care.

Peyton Davies  To be honest. I couldn’t get my blood pressure under control enough to leave the hospital until they prescribed me some Xanax. It really helped me let go and relax. 

Rose Madura  Lisa, I had Afib off and on for about six weeks after my surgery and yes, it is scary.  But, it is quite common. There are some videos on this site about it.  You are at the right place and they will take care of you.  I'm sorry this happened to you.  It is unnerving and not a good feeling.  Hopefully the medicine will take care of it soon and you will convert out of it. 🙏❤️‍🩹

Susan Lynn  Lisa - As Rose said, Afib is common. Hopefully, your episode is under control. Stay positive. You're doing great so far!

Muhammed Abujuma   Had my mitral valve repaired by open surgery due to severe regurgitation and prolapse 10 years ago doing fine

J Alexander Lassally  I know it is my standard line - but know that OHS is super safe nowadays. That is a fact !  And regarding the moment - realize that you are doing something harder and more scary than many people have ever done / could relate to. You are going to do it  - and thrive!  So I say embrace the  moment and surrender to the intensity of it. Warrior training. Afterward, you will realize that "you did it !"  And there is a sense of pride there. 

Doug Fults  You got this Lisa! You've done a great job evaluating options and making the best decisions for you and your family.  I am happy to see that you will be in great hands, and will be thinking of you!  

Richard Munson  Wear mask especially at the doctors. avoid crowds, eat at home, and if you get it, it will for sure affect your surgery date. Thats almost the first question they ask after your date of birth 50 times. 

Robert Miller  Get the latest covid shot. Wash your hands. Wear a mask if you wish to do so in crowded areas. I don't think there is much else to do. I have a minor (not heart related) procedure tomorrow where I will be under minor narcotics and can't be sick. I didn't take any special precautions nor did I for the surgeries a couple years ago.

Having said that, for recovery after OHS, the biggest issue is when you cough or sneeze. That's a real pain! The best thing for this is the heart-hugger. Wearing it looks silly but it helps a lot when you need it. 

Richard Munson  I agree with j.a.l. Mask and distance. Very religious response. For me, i have had my last covid booster. 

Lisa Silverman  Thanks all what is a heart hugger???? Can you post a link? I’m vaxxed and my family is also, we are masking and distancing and praying. I’m too crazy with my upcoming surgery to go too crazy w this but doing my very best. I’m having my daughter mask at school also. Really appreciate y’all!

Robert Miller  Regarding the heart hugger, that image from Rose is pretty much what I had. You pull these two handles together whenever you feel you are going to cough or more importantly sneeze. It makes a big difference. I was provided one free or charge by the hospital both times. If you want to buy them, they are kind of expensive. So ask the hospital about them. These are cheap bands, Velcro, plastic handles.

Rita Savelis  I'm sorry that you have to go through this. A calmer more peaceful feeling sounds right to me. Follow your instincts and don't let others tell you what to do. This is your choice and every choice is the right choice for you.  Every choice is difficult but then you move forward. There are many qualified surgeons in hospitals other than CC. Take care.

Lisa Silverman  Rita and Richard thank you. I do worry that if anything went wrong locally I’d always be upset that I gave up the “best” option of CC. I wish the traveling part of it felt more comfortable to me.

Rose Madura  I live in Ohio and went to my local hospital (Kettering)  which is in the nation's top 100 hospitals for heart valve surgeries.  My surgeon was excellent and I felt very comfortable going there.  I did have lots of complications (no fault of the hospital or surgeon - my body was angry at the trauma) and I had to be rehospitalized four times over a three month period so being local turned out to be the best option for me.  You don't need additional stress.  God bless you on this journey.

Valerie Allen  Do you know how many of your specific surgeries are performed by the surgeon at the local hospital?  Also outcomes for your surgery. They should be able to tell you. I understand completely your feelings about the possibility of later saying”what if?” I made the trip but I also understand the dilemma.

Richard Munson  No doubting that cc is a great hospital but there are many others in the top echelon. If everyone went there , the other places would go out of business and their lead time would be 10 years. I chose mass general in boston due to proximity and expertise. It was fine. I had one nurse i disliked, but i had 50 i loved. In some ways, picking a doctor and/or hospital is like choosing a new restaurant based on the advice of a bunch of friends and web site kudus. You go there and hate it. I have no doubt that every hospital in the top 3 has a small % that hated it. It probably boils down to results. As meatloaf once sang, “2 out of 3 ain’t bad. “

Joanne Heckmann  Do you have any more details about your valve?  How complex is the repair?  If you click on Heart Hospitals on this site, you will see that there are no valve centers in Kansas.  It is highly recommended that valve surgery be done at a valve center.  I live in upstate NY and am going to Indianapolis. 

Dan Fouratt  This is your call.  We all went through it.  I stayed local, my doctor was well regarded and completed many of these surgeries.  My was a "simple" aortic valve replacement. I did look in to Cleveland but after researching the local doctor I stayed with Duke.  Good luck on your decision journey.  Dan

Robert Miller  Hard decision. One doctor at the local hospital is out. That leaves you with the other doctor at the local hospital and Dr. Malas and Dr. Gillinov at Cleveland. I would go by experience. Don't count on what the surgeons tell you. Look at ratings of surgeons including on this website. 

Surgery locally is much more convenient. However, consider that if you decide to go to Cleveland, this is a temporary inconvenience. Fixing your heart will be for the rest of your life. It could still go wrong but I would go with the surgeon that you feel is the most capable, independent of the location. 

Deena Z  Do you look at the robotic surgery outcomes for the one doctor you liked locally?   Pretty important to do so. I travelled and it would have been much easier to stay local, but when I looked at the outcomes for "best local surgeon" that told me all I needed to know.   

Lisa Silverman  Tammy I’ve met w/multiple surgeons at this point and never heard this stat before. I’m messaging my cardiologist to fact check.

Adam Pick  Hi Lisa,

I believe Dr. Khan is referencing a mortality rate for severe MR that is not treated for a long, sustained period of time. 

I believe there is data suggesting a 5-year time horizon for mitral regurgitation just as there is research suggesting a 50% mortality rate for a  two-year timeline for severe aortic stenosis without treatment.

That said, I’m not a doctor. So, I’ll ask Dr. Khan.

I can’t imagine your medical team would put you at risk if emergency surgery was required. Make sense?

Best regards, 
Adam

Adam Pick  You can find more information specific to mortality related to severe mitral regurgitation that is not treated at this link - https://www.heart-valve-surgery.com/mitral-valve-disease-awareness-week

Adam Pick  More specifically, the research is referenced in Alliance for Aging Research, The Silver Book: Valve Disease, 2018.  Hope that helps!

Richard Munson  Mitral valve prolapse without symptoms is the silent killer. I found my moderate to severe situation during a routine physical . Doctor heard a little noise and scheduled an echo. As luck would have it he was my pcp but had cardiology training or who knows. How many out there never find it. 

J Alexander Lassally  I think those stats are more for the "total do nothing" crowd. Eventually, it gets you. But not applicable to younger patients who still have heart flexibility ! 

Susan Eckermann  Hi Lisa. I am late to the party but I would like to share my story with you. I was diagnosed with severe mitral regurgitation. My HMO doctors told me their plan was "watchful waiting." I didn't have any obvious symptoms but was tiring during exercise/exertion. I sought out a second opinion from a skilled cardiac surgeon. He explained the risks of waiting and advised if I were his patient, he would recommend surgery within 30 days. Thankfully, I was able to change health plans and had surgery about 45 days later. Surgeons gave me a 60-70% chance of successful repair. Thankfully, my surgeon was very skilled and persistent. I was in surgery 7 hours, but had a successful mitral valve repair, pericardial cyst recision, and Maze procedure. My 2 year "valveiversary" is just over a week from now! Unfortunately, my A-fib has recently returned. My cardiologist isn't too concerned and attributes it to stress. But thankfully, my heart is in great shape. I am back to doing everything I was doing prior to my diagnosis. Feel free to read my prior posts, but seriously, the surgery and recovery is manageable. My surgeon explained that one of the reasons my repair was very difficult was because the tissue of my mitral valve was lax ( there is probably a more appropriate medical word for this but I don't know it) likely from the extended severe regurgitation. They ended up trying several different ways to repair it, and ended up excising a large piece of tissue. I wish I had been diagnosed and had my surgery sooner, but thankfully, my skilled surgeon was able to make a successful repair. It just doesn't get better on its own. Best to you. This is a wonderful site with amazing heart warriors and a wealth of information.

Richard Munson  What a great question lisa. I know i had a zillion tests prior to my surgery 3 years ago, including a heart catherization to check for blockages but were any of them a full body ct scan , i can honestly say i have no idea. My suspicion is i did not but one never knows. I did not watch the webinar but my takeaway from hearing that  portion of it seems to confirm what i have wondered about that  bouncing back and forth from heart lung machine to regular heart action can truly shock your body. My analogy has always been like turning back on the power to your house after a blackout. There is always a jolt due to some breakers being still in the on position. I recall on one such occasion my t.v. Blowing once power was restored as it was on when we lost it. Love to hear from others. 

Susan Lynn  Lisa - I had a CT with contrast of my chest, abdomen, and pelvis. You need to trust your doctor. He wants a successful procedure as much as you do. Please call me if you want to chat.

Yumiko Ishida  CT scan was never mentioned to me in the context of my heart surgery, but I also knew pretty early on that I wanted a traditional sternotomy. Minimally invasive procedures are inherently more complicated and higher risk, so the quality of the pre op images are extremely critical. Is it possible your local hospital is talking sternotomy not robotic surgery? 

Pamela Gregory  Hi Lisa. I traveled from DE to CC for Aortic Valve and Root Replacement . I had to be there several days before surgery for testing and meetings. After surgery you are generally in the hospital for about a week and have to stay in the area for an additional 5-7 days to make sure everything is going well and get clearance to fly home. I was actually in the hospital for 2 weeks because of a complication and stayed in town for 5 days to get the clearance. Flying was very easy. You would want to make sure to have a wheelchair (just call airline) on both ends of the flight. Walk before flying and if the flight is longer than an hour walk hourly (double check of coarse with the team) to prevent blood clots. Don't hesitate to reach out with any questions

Peyton Davies  I’m from Wichita. My cardiologist is at the University of Kansas Medical Center. I’ve had 1 heart catheter done there and I’ll be back next month for my second heart catheter. I will be traveling to NYC to have my aortic replacement. 

Valerie Allen  Hi I went to CC in April for aortic replacement and aneurysm repair. I was very nervous leading up to it, but once I got there I knew I was in one of the top heart hospitals and I relaxed. If affordable buy a first class ticket on the way home. And as Pam said, secure a wheelchair for the airport through the airline. Makes things 100x easier! There is a hotel attached to CC. They have a patient rate and this makes things so easy, especially in winter. There are several others walking distance with more affordable prices. My care was just what I had hoped.

Phyllis Petersen  I travelled to CC from Tucson, AZ in October 2016 for robotic MV repair with Dr. Gillinov. They really are a great facility with top-notch care. If I can answer any questions for you, message me here or at fabphyllis@gmail.com. 

Joshua Nowack  So I had an option to go slightly local (15 min away) to Hoag (Newport Beach CA) and to go to Cedars-Sinai (Los Angeles CA).  Ultimately due to insurance they ended up sending me to Cedars - which was my desired outcome in the first place.  But both surgeons would have done through robotic repair.  Same condition as yours.  Now the Hoag doc does one mitral repair every other week.  His procedure takes about 7 hours and it's a week long stay at the hospital.  Cedars - then Dr Trento (now presumably Dr Chikwe - who is a frequent guest of HVS)  - does two mitral valve repairs every day.  The procedure typically takes about 2 hours.  Nothing replaces experience.  If you have the means to go to the best - and CC is the best - go see the best.  Statistically, and you can look the stats up, by the journals all point to centers of excellence have better outcomes.  So if it's an option - go to CC or any of the featured centers from HVS. 

Robert Miller  My BIL is a surgeon that does a lot of robotic surgeries (not heart) and he highly recommended me going that route, if possible.

I have not heard that this procedure might give you more pain. Actually, I heard just the contrary. But maybe I got wrong information.

Robotic surgery has a lot of advantages, incl. faster recovery (with open heart surgery the main recovery is for your chest to heal), much smaller scars (which some people care about), a lesser risk of infection of the scars, more precise as those "robots" remove the slight shanking of a surgeons hand, etc.

The biggest disadvantage is, that  the surgeon doesn't have such a clear picture of everything and in case of an emergency, the surgeon doesn't have full access to your chest so he might end up having to open your chest. That's unlikely to happen but it could happen. 
The important thing is that your case isn't a complicated case (doesn't sound like it) and that you select a surgeon that has a lot of experience doing robotic surgery. 

As for doing it sooner than later when it's inevitable, I 100% agree. If you have severe regurgitation then the heart and your blood vessels will try to compensate for that and this affects both the heart and the vessels in a negative way. So time just makes things worse. 

You might find more information on the learning center. Scroll down to the bottom because that's were the interesting links are. Ignore the stuff at the top, unless you happen to be interested in it.  https://www.heart-valve-surgery.com/learning-center.php 

Richard Munson  Interesting. Just had laser eye surgery yesterday and all those advantages you state are also listed as a reason to go this route with the eye. Time will tell. 

Lisa Silverman  Thank you Robert that is really good information to hear and I’ll definitely look at those links! My surgeon did say if things get weird he will have to change tactics and go in more invasively. Said he does 1-2 robotics a month and over 100 heart surgeries per year?  Richard this is also good to hear and sure hope you are recovering well🙏🏼

Doug Fults  I found the videos here on mitral valve repair & robotic surgery really helpful  (in the Learning Center, or through the VIDEOS nav link).    I'm scheduled for just that on September 10, will let you all know how it goes.

Rita Savelis  The sternum does not hurt when cut. But robotic goes in by the ribs and can be painful for some, especially women because they have breasts. Pain varies and is very personal. Medical staff is there to manage your pain. I had no pain with traditional surgery but much exhaustion and discomfort. 

Joshua Nowack  @Robert Miller - to address the pain factor - robotic cuts through muscle and more.  So while risk of infection and overall heal time is faster - generally, robotic can be a more painful recovery.  I mean the only narc pills I took was when they pulled chest tubes from me.  But there was a little bit of discomfort for a couple of months following surgery because of the muscle cuts. 

Doug Fults  Hi Lisa, I have "severe" mitral valve regurgitation from an endocarditis episode some 32 years ago (mild until just recently, but now "4+" on a scale of 1-4).  We reached out for appointments to Mayo and CC, CC had a cancellation so went there for evaluation.. They'd initially suggested I'd need a replacement, but after a TEE I was referred to Marc Gillinov, whose office responded quickly (after flying out there for a few days of testing) conveyed that I was a repair candidate (not guaranteed, but that he thought possible).  I'm 63, if I were younger I'd definitely seek a surgeon with a background of successful repairs, as neither a lifetime of blood thinner meds nor a follow-on surgery to replace a worn-out tissue valve after 10-15 years sound like attractive options.  The Mitral valve is supposedly the most "repairable" of the valves, which can last a lifetime - though that is not always the case, as can be testified to by the occasional member here.

Rose Madura  Lisa, Welcome to this site!  I commend you for taking the bill by the horns and seeking out a second opinion.  God bless you on this journey and please keep us posted.  

Robert Miller  I would definitely get a second opinion. Even if it's just to ease your mind that this needs to be done. I had VERY severe mitral valve leakage. They didn't want to let me out of the hospital. From what I have been told, you can't really tell from a TEE if you really need a replacement. Instead, they will first try a repair. Then they test if the repair works. If it does, then they will leave it at that. If the repair still shows leakage, they will do a replacement. I am not sure this is really the standard procedure. You can find a lot of information on this link. Unfortunately, they put a lot of distractive stuff at the top so you think it's nothing interesting. But scroll down and you will find a lot of very useful information.
https://www.heart-valve-surgery.com/learning-center.php

Susan Lynn  Lisa - You're doing exactly the right thing by getting multiple opinions. Write down all of your questions and make good use of the consultation time. Be sure to ask about volume of mitral valve surgeries and success rates. Mitral valve surgery can be a one-time procedure if performed correctly. Please keep us posted on your progress.

Lisa Silverman  Thank you so much Robert and Susan! I was scared to post on here because I’m just plain terrified of all this but I am feeling better hearing from all of you🙏🏼

Robert Miller  I 100% agree with Susan about bringing questions on a piece of paper. For my second surgery I had a full page of questions. I left some space between questions so I can scribble down some keywords, that after the consultation I converted to more detailed notes. Initially I did go 'off script' as some things the surgeon said lead to other questions. The surgeon did take all the time I needed. When I thought I had everything answered, the surgeon asked if he could see my list of questions because he wanted to make sure all of them were addressed properly. Btw, that was Dr. Luis Castro. https://www.heart-valve-surgery.com/surgeons/dr-Luis-Castro-Redwood+City-California.php