Casey's Journal

Clare Auten  My kids were 13,7 and 4 (daughter, son, daughter) at the time of surgery. My husband had some out patient surgery shortly before mine. We talked about the surgery and I the doctor was going to fix my heart. I told them that since it was a bigger surgery I would have to sleep at the hospital a few days. They already knew from my husband's surgery that there would be some recovery. I wrote them notes to read while I was at the hospital. We chose not to have them visit me until most of the tubes and things were gone. Surgery was a Thursday. They came to see me Saturday. My surgery was 1/9/2014 so I am over two years post op. Every once in a while the kids still mention the surgery when talking about something else. You know your kids best and what they can handle and what ideas they already have. Hope that helped.

Kate Watson  It's interesting you ask this because I had the same question. My son was 11 the first time I had surgery (he is 22 now) but I have a 6 year old step daughter and am thinking about how to talk to her about it. With my son, I felt that it was best he didn't see me in the hospital because I felt that it would traumatize him to see me there. My surgery was several hours from home, and he is very sensitive so that's just the choice I made for him to stay with his dad (who I wasn't with anymore). We talked on the phone every day until I came home. I remember beforehand telling him that I had a problem with my heart, but that the doctors were going to fix it, and that I was going to be ok. And explaining to him that I was going to be tired for a while after the surgery and would need to sleep a lot, so other family members would be around to help him. He just needed to know that I was going to be ok, and that he was going to be taken care of, and he did just fine through the whole thing. Just be mentally prepared that they will likely ask you if you are going to die. My step daughter has already asked me this. I have reassured her that I won't, though I still have to convince myself of that! There's a book on Amazon that I'm thinking of getting. Though it may be geared towards parents with cancer, or terminal illness, it still appears to have good info in it that would be helpful in our cases.

http://www.amazon.com/Children-Through-Parents-Serious-Illness/dp/B0044KN0TK

Sophia Ridley  I have 3yr and 6yr old girls. My surgery was mid November. Be honest and straightforward with them, answering questions as they arise. I told their school / carers so that they were prepared, this has been extremely valuable as they have been able to talk about it.
Introduce that you're not well early (can't do X because..) and then explain surgery closer to the date. I drew the heart correctly (so not to associate the heart symbol with my op) and then explained my valve was like a floppy banana skin and the doctor was going to fix it, mummy was going to take a time to get better but then I'll be able to go to the park etc. I also drew a red line on me to show the scar which shocked me more than them. They will be scared but if you seem calm and confident, then they will be guided by your reactions.

Do explain who is going to look after them during this time and prepare them for any changes to routine - I used this as a positive as my parents visited for 3wks so my op paled into insignificance!

They have been both very caring and a wonderful tonic during my recovery. My aim has been to give them a positive experience as I unfortunately don't know if they have EDS and will potentially face the same surgery.

  Hi Casey, my kids were very anxious prior to my surgery. They are 9 and 6. Both my kids were worried although it manifested differently in each of them. Like Clare, we talked about it. He asked me what would happen if I died. I was honest with him that it wasn't likely to happen, but if it did (in the slight, slight chance), that he is loved and I would get to be his guardian angel. Before my surgery, we bought fabric and all made heart "hug" pillows for them to hug while I was in the hospital. I also wrote each child a short note to read while I was in surgery about how proud I am of them and that everything would be fine. I also wrote notes that I kept in a dresser in case something did happen. That freaked my husband out as he found them while I was in the hospital recovering. The boys kept asking me if I felt their hugs from the pillow and of course I told them I did and asked if they felt my hugs (which they did). Both boys said they read my letter. My oldest said he made it his bookmark that day and read it repeatedly. They came to visit me the day after surgery (after I had a few tubes pulled out and was with it enough to interact). When I was home, both of my boys were so wonderful with me. They would get me blankets and do whatever they could to help. I saw a wonderful side of them both.

Kate Watson  Oh I so know where you are coming from. I had my surgery over 10 years ago and got a tissue valve to replace my aortic. I found out a few months ago that the replaced valve and my mitral valve are both deteriorating now, which I really wasn't mentally prepared for. I have had 2 surgical consults so far and am going to see another one in a few weeks. I am determined to find the right surgeon for me. It is very hard not to get obsessive over this and I think it's totally normal. I would say to make sure you are totally comfortable with the surgeon because you want one who is confident and reassuring. I would also be freaked if a surgeon said it would be "tricky." That decision about what type of valve to get is a hard one and a very personal one. I don't know if I regret getting the tissue valve, but somehow the last 10 years went by so fast and I just don't want to face surgery again. I am also 40 fyi. Not how you imagined starting your 40s, is it? I sure didn't! Good luck on your decision. You will find the right answer for yourself.

Casey Overcamp  Wow, thanks so much for posting Kate, super helpful. Sorry about the double valve deterioration. Do you still have options on another biological valve vs mechanical? If so, are you leaning one way or another? Looking back, would you choose differently for the initial replacement? Sorry if these are hard questions that you're in the thick of. Just curious, particularly as I weigh it for myself. You're 10 years ahead of me (in experience not age) so I appreciate your insights.

Emily Rowley 
I've underwent two Mitral Valve Repairs. This time my Mitral Regurgitation was very Severe and mine was a very tricky case esp because my heart is one in a million-very unusual. At first I was only going to have one highly skilled Surgeon and her Team but I ended up having a whole Team of the Country's highly skilled Surgeons (including her) and the rest of her Team. This made all the difference, I hope you can find a highly skilled Surgeon who does complex cases with fantastic outcomes. What level is your Regurgitation at such as mild-moderate-severe? How are your symptoms? Originally we had planned to replace my Mitral Valve with a Pig Valve but her Team discussed my heart with my previous Surgical Team and discovered only a Mechanical Valve will fit. In the Operation they were able to save my very problematic Mitral Valve with a ring and stitches. Have they said what is the issue with your Valve ie. Cleft in Leaflet or floppy leaflets? Hope you have a good discussion with your Surgeon, take your time to have any of your questions answered and see whether you feel comfortable with them. Let me know if you have any questions. Ps. I'm told it doesn't hurt as much for a male.

All the best,
Emily.

Cathy Slipski  I was also in the same situation as you are. I am 37 and I just had surgery Jan 25th. I struggled for many months on which valve to choose. I did not want a life long commitment to blood thinners so I went with a tissue valve. Blood thinners scare me and I felt the risk of blood thinners made my mind up for me. So now I have a bovine tissue valve and I am recovering at home. Hang in there and if you have any questions all of us are here for you

Tim Goff  Casey, you are already taking the right actions with research on your specific condition and surgery. Is the issue with your anterior or posterior leaflet? If your surgeon said the surgery would be tricky I would definitely make the effort to have at least 2 other opinions on your surgery given the information you have provided to them. My mirtral valve was in tough shape and my heart was swollen too leading to AFIB. I had an excellent surgeon and we decided on the sternotomy for better access and if a valve replacement was needed, artificial. The side effects and afib issues could have kept me on thinners anyway and a re-op for tissue replacement i felt was a larger risk. Each of us must make that call ourselves though. I'm 53 now and about 11 months out from surgery and feeling great. Keep up the research and find the surgeon who gives you the confidence in his approach. Get the best, you and your family deserve it.

Casey Overcamp  Thanks all, I appreciate the comments.

Emily, my regurgitation is classified as severe and I have some symptoms like shortness of breath and mild chest pains. From what I can tell through research, I've got the best surgeon in the NW but everyone says to get a second opinion so I'm going to go through that process.

Cathi, thanks and good luck on the recovery!

Tim, thanks for the post. I'm also heading toward a sternotomy. The problem with my valve is that it's both anterior and posterior leaflets. They aren't sealing properly.

Jan McClain  Casey, I also have severe mitral regurgitation, both anterior and posterior leaflets, and Dr. Marc Gillinov at Cleveland Clinic reviewed my Echo and other lab work, and, according to his staff, feels my valve is repairable. And, depending on other tests to be performed prior to surgery (CT of entire aorta and ultrasound testing of femoral vessels), I may be a candidate for a robotic surgical repair. So that's where I'm going-- two thousand miles away from home-- my surgery is Feb 25. Please make sure you get a second and maybe even a third opinion from recognized high volume mitral valve surgeons. Mitral repair is much preferable to replacement, especially at your young age.

  Best wishes on your decision, Casey. It is scary when we are told something like this needs to happen for us to live a longer life. Sounds like you just found out so you are doing years of work in a matter of weeks. Cleveland Clinic has AWESOME web chats with surgeons where you can submit questions and they will answer them. I also have used their Q & A service and they sent me a bunch of research articles. I found out that I had a congenital defect about 6 years ago and have an extensive family history so I had time to let this sink in. I am also 40 and had aortic valve replacement on 12/1. I was scared to death about this surgery because I have two young boys. Now at 9 weeks out, I feel great and I am thankful for my health. You can read my journal for information on why I chose a bioprosthetic valve. There are pros and cons either way and there are lots of great people on here who can share their experiences to help you feel better informed. Best wishes to you!

Artie Rubin  Hi Casey, as with the other responders to your post, I too can well understand your feeling freaked. I can only share my own experiences, as long as you keep in mind that every case is an individual one.

My mitral valve was in really bad shape (regurgitation). I knew I had to do something pretty soon, and I very much wanted a minimally invasive procedure--even a robotic one. Who could blame me for not wanting my chest cut open? (Post-op, I was astonished to discover that my cut-open chest was not that big a deal. My fatigue and constipation were the real downers for me.)

The surgeon I admired said he wouldn't do it minimally invasively because my valve was "complex." So I looked for surgeons who were willing to do it M.I. I dragged my feet on it since I was asymptomatic, until one day I was in big trouble with a heart infection, which I wouldn't have gotten had I fixed the valve sooner. By the time they'd fixed that, I was ready to jump on the operating table.

I again consulted my original choice for a surgeon who, I knew, tried his darnedest to repair rather than replace a mitral valve. He said he wouldn't know whether he could repair mine till he got in there, but then he said the most encouraging words, "I've repaired worse than yours." And yes, he did repair it. In fact the very first thing he said to me when I was conscious was, "We repaired it." That's how important it was to him.

So my advice: get a second opinion and even a third on your condition. Ask each surgeon what he thinks your prospect is of having it repaired. You DEFINITELY want it repaired rather than replaced, if repair is do-able. Make sure your surgeon values repairing as highly as mine did. And also make sure your surgeon does this operation a few times a week rather than just now and then. Experience counts hugely, and your surgeon should have racked up thousands of these procedures already.

Finally, even if he goes in attempting to repair it, you'll still be asked, pre-op, what kind of valve you want in case he can't repair it. My own feeling--and this is just me--is that, even for younger people, a tissue valve is preferable. I believe medical science will continue to improve exponentially and astonishingly in the years to come. And by the time your own valve needs to be replaced, they won't even have to cut you open to do it. I can't guarantee that, of course, but it sure looks like an eventuality, even within the ten year timeframe you mentioned. (And I'm told, it's more like 30 years till replacement in most cases.) It's for you, no one else, to choose what kind of valve you'll have, I'm just passing my thoughts on to you to think about.

BTW, are you having this done minimally invasively? Check out that option for sure and get all the facts.

Finally, if you're fearing that you might not make it through the operation, I hope you've read by now that the mortality rate is 2 percent, and even lower, depending on your source of info. And those cases invariably had other diseases going on at the same time. Medical science has these procedures down pat. It's done in countless numbers every single day, and the vast majority of patients come out of it really well, and in much better shape than before. It's a miracle and a tremendous gift. I hope you can come to see it that way.

All the best, Artie

Sharmin Atker  I had severe mitral regurgitation with bi-leaflet prolapse that was repaired via a median sternotomy.

Robert Frederick  A second opinion is good. If you can find an surgeon and a team that is close to your home, it makes it easier for you and your family. But if not, you need someone who has done many operations and a hospital with an experienced team.

I had a mitral valve repair at Princeton Baptist in Birmingham Alabama.. Dr. Lewis and his team there are very experienced with replacements and repairs.

Casey Overcamp  Thanks all SO MUCH for the comments and info. I've been binge-reading on the subject and today finally feel like I'm leveling out emotionally. Still lots to weigh but this community is super helpful.

Wanda Mroz  My mitral valve needed a bi leaflet repair. It was tricky and during surgery the surgeon had to do it over because it was still leaking... Then it finally worked! I also had a tricuspid fix and maze procedure... Took about six hrs. I can totally relate to the feeling of surreal and being freaked out. It's a lot to comprehend. I still find it surreal and I'm six months post op almost. You will make the right decision... Follow your gut. Also remember with the advances in heart procedures, any future surgeries may be much easier to perform and recover from. Best of luck to you.

Emily Rowley  There are new generation anticoagulants which don't require monitoring, have no side effects, no need to monitor diet. I had my heart set on Pig's Valve but found out I can only have a Mechanical Valve with my anatomy of my heart, but repair is best for me.