Lenore's Journal

Shout out for a good Thanksgiving for all. This has been a challenging year in so many ways, and those of us in the heart-valve community form special bonds across the miles and without in-person contact but we’re all sincere in wishing each other the best on whatever portion of this road you’re traveling. I’m almost 6 yrs post-mitral valve repair and I remain grateful for the fabulous Cleveland Clinic and the very exceptional Dr Marc Gillinov. Here’s to everyone in healthcare, too.

I only drop by this site occasionally but always think of everyone here as fellow survivors. My own mitral valve repair by the incomparable Dr Marc Gillinov of Cleveland Clinic back in 2015 (traveled there from Colorado and so very glad I did). I always take a look at those of you in line for that big room with the lights, the many people in masks, and of course your surgeon. Best wishes to each of you - soon you’ll be on the recovery side. One day at time!

Thanksgiving is a time for reflection and for thanking everyone on this site, from Adam to all of you in the “waiting room.” Take care, all, and carpe diem. Those who’ve traveled this OHS road whether you’re in the middle of the journey now, far past it or just taking first steps - we all have a unique perspective on life and how precious each day should be. Easy to forget but important to try and remember. Cheers all!

Hi All - Thanks to Adam and the physician who posted info on heart failure related to valve issues (mostly mitral valve as far as I know). I just posted my own story after Adam’s post. I was shocked to be diagnosed with HFpEF about a year after MVR. My valve is just fine, it’s my heart muscle that’s not so fine. The important point is that it’s very important not to wait too long for mitral valve repair, which happened to me (HMO thing....). Anyhow, best of luck to you all - stay on top of things, and ask questions!

HI All - I’m post op Mitral Valve Repair January, 2015 at Cleveland Clinic. I live in Colorado and I”m an RN (retired) so here are my thoughts on choosing a hospital and surgeon. Even though I knew several Denver area thoracic surgeons (and had worked at the same hospital as they do), in my opinion, most thoracic surgeons do several different surgeries so they don’t specialize in heart valve procedures. Even if they’re done 200 valve procedures, it’s generally not their main expertise. The surgeon I went to at Cleveland Clinic had done 6000 valve surgeries - a big difference. In addition, CC has an enormous hospital dedicated mainly to cardiac surgery, meaning the entire team is very well versed in operative procedures and care afterwards. To make it even better, I was shocked to find that in my case, the portion of cost I paid was significantly less than I’d expected. (I’m on Medicare and have no Medigap). I think the lower cost was likely due to the high volume of cases CC does. As for travel to and from Cleveland, I too was a bit concerned about that, but it all went very smoothly. Everyone at Cleveland Clinic is fantastic, and they help arrange transport to the airport as well as wheelchair transport onto the plane. My daughters came with me, and stayed in a hotel close by. In sum, I highly recommend considering these factors: the number (volume) of surgeries a particular surgeon has done can make a big difference; a specialty hospital means that the entire team is well versed in providing care needed; and finally, the travel aspect went much more smoothly than I’d thought. As for the cost, I imagine it varies based on particular insurance, but again, Cleveland Clinic is willing to provide cost estimates. They also have cardiac nurses ready to discuss options by phone beforehand. I’m so glad I went there!

HI All - I’m post op Mitral Valve Repair January, 2015 at Cleveland Clinic. I live in Colorado and I”m an RN (retired) so here are my thoughts on choosing a hospital and surgeon. Even though I knew several Denver area thoracic surgeons (and had worked at the same hospital as they do), in my opinion, most thoracic surgeons do several different surgeries so they don’t specialize in heart valve procedures. Even if they’re done 200 valve procedures, it’s generally not their main expertise. The surgeon I went to at Cleveland Clinic had done 6000 valve surgeries - a big difference. In addition, CC has an enormous hospital dedicated mainly to cardiac surgery, meaning the entire team is very well versed in operative procedures and care afterwards. To make it even better, I was shocked to find that in my case, the portion of cost I paid was significantly less than I’d expected. (I’m on Medicare and have no Medigap). I think the lower cost was likely due to the high volume of cases CC does. As for travel to and from Cleveland, I too was a bit concerned about that, but it all went very smoothly. Everyone at Cleveland Clinic is fantastic, and they help arrange transport to the airport as well as wheelchair transport onto the plane. My daughters came with me, and stayed in a hotel close by. In sum, I highly recommend considering these factors: the number (volume) of surgeries a particular surgeon has done can make a big difference; a specialty hospital means that the entire team is well versed in providing care needed; and finally, the travel aspect went much more smoothly than I’d thought. As for the cost, I imagine it varies based on particular insurance, but again, Cleveland Clinic is willing to provide cost estimates. They also have cardiac nurses ready to discuss options by phone beforehand. I’m so glad I went there!

Hi everyone! Merry Christmas, Happy Holidays to all. A special hello and best wishes to all those whose surgeries are coming right up. Sure, you’re nervous! That’s to be expected. But have confidence in your surgeon and the team who’ll be taking care of you. It really helps to turn everything over to them. Meantime, you do your part by climbing onto that gurney and telling yourself all will be well - this helps a lot! And don’t forget the slow deep breaths - helps to calm you, and then post op, it helps relax you and lessen any pain (but take pain pills or IV pain med as needed too). And smile! Soon you’ll be on the road to recovery. Cheers!

Hi Everyone! I’m an alumni of the group, had a mitral valve repair by the fabulous Dr Gillinov at Cleveland Clinic January 2015. Seems like a long time ago, but whenever I log on to this sight, I send good wishes to everyone here, especially those on the “next up” list. Take care, all, and Happy Holidays!

Hi Everyone - Anyone here having high altitude hypoxia after OHS? First of all, best wishes to the fabulous five on the upcoming surgery list. Soon, you’ll join us on the other recovery side. Here’s my question to the entire group: I’m post op mitral valve repair at Cleveland Clinic January, 2015. I live in Colorado at 6000ft and love to hike upper elevations, from 8500 to 14000ft. Although I don’t need oxygen at 6000ft, my finger pulse oxymeter shows hypoxia beginning around 9 to 10000ft, worsening the higher I go. I hike slowly because I’m botanizing, enjoying wildflowers. Pulmonary and cardiology work ups concluded I’ll always need supplementary oxygen at high elevations. I was possibly hypoxic prior to MVR but never checked. Do have enlarged left atrium. Just got an Inogen G4 portable oxygen concentrator to use at altitude. Any similar stories out there?

I'm 2 1/2 years out from mitral valve repair at Cleveland Clinic - can't overstate how glad I am to have gone there! Here's a shout out to all you fab five on the upcoming surgery list. I remember the feeling, but you'll be on the "other side" and sliding into recovery before you know it. Don't forget to take nice slow deep breaths - helps relax you, and also helps with any discomfort afterwards, and besides - it aerated the lungs. Good luck, all!

I'm two years post op mitral valve repair with maze procedure due to a-fib. Two pieces of advice for those on this site: first, best of luck to all of you facing surgery or in early recovery phases. Second, for those who haven't yet chosen a surgeon and hospital, please know that you're in the driver's seat and that it is imperative to chose the right surgeon. As a retired RN living near Denver, I'm aware of local surgeons who do perform cardiac surgeries, but in most cases valve surgery is not their primary procedure, which is mostly why I chose Dr Marc Gillinov at Cleveland Clinic for my surgery. He's done over 6000 valve surgeries, and there are also other specialists in this field. Just because a surgeon lists valve surgeries among other procedures, it doesn't mean this is a primary skill. It's very worthwhile to ask questions and research options, as valve surgery is different from other procedures. Learn as much as you can and then make an informed decision.

Here's a shout out to Rose, Candas, Bob, Robert and David - all of you on the upcoming surgery list. Congratulations! Yes, finally you've made it to the important moment. Sure, you're nervous. We all were! But concentrate now on feeling confident and looking ahead to recovery. Soon you'll be on 'the other side' of all the worry and on the road to feeling better. It's been almost 2 years since my mitral valve repair at Cleveland Clinic, and while I'll never forget the nervousness of the weeks leading up to surgery, I strongly encourage those of you still contemplating surgery to select the very best surgeon and hospital! It's important! I traveled from Colorado to Cleveland, and it was well worth it and not all that difficult. Wasn't even that much most costly in my case. So good luck to all, and Happy New Year!

Here's a shout out to each of you on the dreaded upcoming surgery list - it's actually good to be there, though, because it means you're about to get the show on the road and then head right on to recovery. Waiting is the most nerve-wracking thing, and so may all of you face surgery with courage and the conviction that all will go well.

Hi All - Happy Easter to everyone (Adam, your son is adorable). A special basket of good wishes to all of you on the dreaded and yet good upcoming surgery list. Before you know it, you'll be on the road to recovery. Positive thoughts do help, so keep up those calming deep breaths and remember to let this community know how you're doing.

So here we are, nearly another new year. Best wishes to every one of you, whether you're facing surgery soon, are in the recovery phase, or, like me, are surprised to have OHS in what seems like the distant past. Most of all, a huge thanks to Adam, whose organizational skills led to beginning and maintaining this very valuable forum. No matter where you are in this process, and no matter what your background might be in relation to the health profession, this site is incredibly helpful. Happy New Year to everyone, and especially those of you who I call the fabulous five - your names are on that dreaded upcoming surgery list. Know that all of us are praying for you and wishing you well. Cheers!

Hi Everyone! I'm almost a year out from MVR, and feeling great. I live in Colorado at a bit over 6000ft, and that elevation is fine, but since I love to hike at high elevation (above timberline the alpine plants are very special, and I teach classes on them), I did experience some hypoxia (low oxygen levels) last summer while hiking. I hope this will be gone by next summer. I completed rehab just fine. My main reason for posting is to wish all of you, no matter where you are in this OHS process, a happy holidays and also a smooth road ahead. Cheers!

Here's a HEARTFELT shout-out to the latest fabulous five whose names are posted on the dreaded and yet good upcoming surgery list. Dreaded because we all freak out a bit when seeing our names - it's actually happening! And yet good because it's happening, and then you'll all feel better. Best to each of you as you hop on that guerney - soon you'll be on the road to recovery.

Here's a shout out to the fabulous five on the infamous upcoming list. I'm nearly 6 months out from mitral valve repair, and doing good. Go ahead and freak out, cuz we all do a bit, and then go ahead and soon you'll join us on the road to recovery. Best to each of you!

Request for advice from all my post op folks! I'm about 4 months post op now and planning multiple trips to 12,000ft for botanizing - so mild hiking. My cardiologist recommended getting a finger pulse ox, and I've been researching but there are so many and such various prices. I'm considering a Nonin Onyx Vantage - not cheap, but supposedly good. Anyone out there who's bought a pulse ox and has input? Thanks. (My first high altitude hike isn't until end of June, then several in July - ok'd by my cards doc, and I live at 6000.)

Hi All, and a special greeting to those five of you on the upcoming list! As I've said before, go ahead and freak out a bit and then get down to it and get yourself ready. Keep in touch too - we all care about how you're doing.

First of all - a shout-out to you folks on the upcoming list. Go ahead and freak out a bit (we all did) but then know that soon you'll be on the road to recovery. Next, some comments on minimally invasive surgery. Thanks to Adam for contacting Dr Gillinov, who was my surgeon at Cleveland Clinic. Please remember that although we'd all prefer a tiny incision, fixing our heart is the main issue. When I went to CC, they did extensive pre-op testing and determined that because I'd had some a-fib, a mini-sternotomy was needed so that Dr G could fix the mitral valve and also do a maze procedure. Bottom line, choose the best surgeon and then leave decisions up to him. In the end, any incision causes some discomfort, but you heal. And, pay close attention to the segment on a-fib, which can be a dangerous arythmia. If you have a-fib, you need to have it fixed. A huge thanks to Adam for his thorough attention to this important issue. You're the best, Adam!

I was shocked to hear that 70% of those with a-fib don't receive surgical treatment when undergoing valve repair surgery! Wow, that's terrible! So a big thanks to Adam for the a-fib educational materials. All of this is why I chose Cleveland Clinic and Dr Marc Gillinov for my mitral valve repair with maze procedure due to my a-fib. Be careful when choosing your hospital and your surgeon!

Hello and good thoughts to all of you on the upcoming surgery list! After you finish freaking out, take some nice deep breaths and know that soon you'll join the rest of us on the road to recovery! Your wait is almost over, and that's a great thing.

As always, the first thing I do when logging on to this site is look at the upcoming surgery names and send a silent but heartfelt best wishes to each of you. I remember how scary it was to see my own name popping up there 8 weeks ago, and yet that's what we're here for - to get all fixed. So go forward with assurance that it really is better "on the other side."

I'm happy to be 8 weeks post op mitral repair, however I'm having tremendous insomnia. According to Cleveland Clinic, temporary sleep issues are common after bypass heart surgeries. Are any of you having insomnia issues and how are you dealing with it? I generally go to bed about 11p, but just lie there reasonably comfy but awake until 3a or so. Trying not to nap daytimes, but averaging 4-6 hrs sleep isn't cutting it.

Here's a shout out to each of you with names on the (dreaded and yet good) Upcoming Surgery list! Hop on that gurney and smile as best you can - soon you'll be in recovery mode, telling us all about it and looking forward to the rest of your life. Here's to getting this show on the road.

OK, everyone, here's a question about incisions. Cleveland Clinic was adamant about not putting anything on the incision, just washing daily with non-fragrance soap. But now, at 5 weeks out, I'm wondering about Mederma since so many of you use it. What say you? I figure it can't hurt to follow group wisdom on this.

Here's a message of good wishes and very best to each of you who've now risen to the dreaded and yet encouraging upcoming surgery dates list! I'm now a month post op and doing well. Each of you will soon be on the other side, so approach your surgery date with confidence and courage. A good attitude going in does help, and soon you'll be headed for recovery. Sure, you're feeling anxious - that's normal - but the road ahead leads to everyone's goal: getting fixed! Trust in your surgeon and the surgical team, they know what they're doing and will take great care of you.