Lenore's Journal

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?

Adam - congratulations on being named 3'rd in heart blogs. You do a great job in leading this wonderful and very supportive group.

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!

Best wishes to all of you having surgery May 14 and 15. Soon you'll join us on the post op recovery road.

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.

First and foremost, here's to good thoughts and speedy recoveries to each of you facing surgery today or tomorrow. I'm almost a month post op MVR and maze procedure at Cleveland Clinic on 1/7. So glad I went there, and also so glad to be home. My only negative about CC was the need to stay 3 days in critical care, which is open concept (only curtains separating patient beds) so it's exceptionally noisy and hard to get any rest. There was also one disagreeable nurse there, but all the other nurses and caregivers were excellent. Food not so great, but it was edible (sort of). Since most patients spend at least a day in ICU, I strongly advise taking EARPLUGS which help some. You'll be getting pain medicine (often Fentanyl) IV at first, then generally will have a PCA (patient controlled analgesic) which is a push button connected to an IV with pain meds - it'll only deliver a prescribed amount at prescribed intervals, but you get to push the button - giving you some control. When you get to a private room, there's more time to rest, although nurses do come in routinely all day and night for necessary check ups and to administer medications. It feels great to get up either to a chair or to walk as soon as possible. Makes you feel more human. It's not uncommon to have a few 'bumps in the road' such as tachycardia (fast heart rate) or ectopic beats (irregular beats) for a time due to the heart muscle being "irritated." Sometimes, they have to administer meds for this. And for those of you who, like me, had a maze procedure to stop atrial fibrillation (irregular beats of the upper - atrial- heart chambers) - even so, it's rather common to still have some residual a-fib post op up until about 3 months. I had a maze, still have some rare a-fib, so am on coumadin (warfarin), a blood thinner likely for about 3 months as well as Digoxin and a beta blocker. Everyone's meds will vary. I still feel tired but am taking longer walks when it's nice outside, have no issues with stairs indoors and although my daughter stayed with me from about 1/14 when I got home until 1/22, I'm now back to living alone and doing ok. I did hire a temporary housekeeper, mostly to vacuum, and I have fabulous neighbors who keep bringing food, but I'm able to cook meals, load the dishwasher, do laundry while being careful not to carry do much at once. So I'm semi-independent. No driving for 6 weeks, and also, I've let my daughter keep my Border Collie at her place for awhile so I can sleep in if necessary. One thing which has kept me entertained is coloring - yup, sort of the same thing kids like, except my daughter got me a cute book with pages and pages of ink drawings of flowers and bugs and such that I fill in with colored pencils. It's mindless and relaxing. Although at first the anesthetic effects make everyone feel 'fuzzy' and make it hard to concentrate, that dissipates by about week 2-3, so I'm back to reading books, mags, etc and also catching up on TV programs.
I'm off pain pills during the day, sometimes taking a Percocet at bedtime, and although I do have some rib soreness, it's not bad. I hope to start cardiac rehab in a few weeks.
Best of good wishes to all of you, whether you're in wait mode, in surgery, or in recovery. Cheers, everyone!

Hi All
Long time, no update, but things are going well after mitral valve repair and maze procedure at Cleveland Clinic on Jan 7. Several bumps in the road with tachycardia and a-fib, but they kicked me out on 1/14 and after a long day's traveling, my daughter is keeping me in line at home now. I did have one episode of tachy a-fib at home but only about 12 hrs. They say it's quite common for the heart to go faster and irregular for up to 2-3 months because it's "irritated." Picture that - our hearts get irritated with us...yikes! All in all, things went well, and it sure is great to join the post op group. To all of you who are waiting, especially those with your names on the upcoming list, I wish you the best. I'll write more detailed notes on my hospital experience soon. Cheers, everyone1

Hi all
I really appreciate all the kind and encouraging messages. After jan 7 surgery, had to stay in ICU 3 days due to hypotension and a- fib, now am on the step down floor. Walked entire circle today, nice to be up. Will find out tomorrow if my daughter and I can fly home 1/14. Have lots of advice now for those coming up. Will write more later when not so tired. Pain not bad, ut good to take something, I'm on Percocet about every 7-8 hours, but it adds to sleepiness. Will say that hospital food at Cleveland clinic is truly awful, but caregivers mostly great.
Good luck and best thoughts to all those in the upcoming line up. Staying mentally calm really helps, not always easy.

Hello all - this is Lenore's daughter, writing to let you all know that she is doing really well after her surgery. The surgeon decided it was best to go in through her front, but not a full sterotomy - a smaller incision, as it was still a robotic approach. He said it went really well, and her heart looked good, and he didn't do a maze, but we are still anxious to get a more complete and more detailed report of what he did and why. However, Mom is doing well. Lots of pain at first, but by the end of the first day, it was better, and continues to get better each time we are able to visit. She is still in critical care, but we are hoping she will have a private room by tomorrow and will be able to get some longer, more quality rest sessions so she can start to really recover. We are happy to be on this side of the surgery, and looking forward to her getting stronger each day, and getting back home. : )

Thanks to everyone who posted positive messages as I prepare for surgery tomorrow. Lots of testing yesterday, and today we meet with various doctors. I'm not all that nervous, so far. It's good to be here in Cleveland and get things moving. Take care all!

Hi All - the bags are packed, the house is reasonably in order, and my


My bags are packed, the house is in reasonable shape, and my confidence is....good, sprinkled with nerves. There's a sort of unreal feeling right before something like this. I experienced the same before other major surgeries, like the two spinal fusions awhile back. Not fun, but necessary. And so is this, so I'm ready. Let's get the plane up and out of snowy Denver and flying smoothly to Cleveland. The wait is over! I'm taking wildflower photos for the doctors and nurses to show them a bit of Colorado. Easier to take than Candy and different. I specialize in macro closeups and spend lots do summer days botanizing in the forests. Looking forward to less shortness of breath esp on high altitude hikes. So flowers and fantastic scenery will be my guided imagery, my way to relax. Take care and God bless you all.

I should finish packing, since like my Heart Sister Tammi, I'm heading to the hospital soon. My daughter and I fly to Cleveland Clinic on Sunday, spend Mon and Tues in a flurry of tests and appointments with an amazing array of docs: pulmonologist, cardiologist, anesthesiologist and surgeon. Ok - why aren't surgerons called surgologist?? Ha ha.
Anyhow, here we go. And I want to thank each of you for sharing your stories, your advice, your questions. From those new to this site to those whose surgery was some time ago, every single person who participates helps themselves and everyone else. And here's to Adam, who started it all. What a great idea! We may not have all the answers, but together we make a difference. I join everyone in remembering Lisa and suspect that her legacy involves a message to live each day to the fullest. All we really have is the present moment, the past is memory, the future is yet to come. So wherever you are on this crazy journey, close your eyes, take a deep breath and enjoy this moment - right now. We can't know the future, even though we plan for it, worry about it, hope for it. Take care everyone, and prayers for you all. And one last thing; I've mentioned several times here that I'd like a new body... well, yes, I still would. But I'll move forward and hope for the best with this imperfect one that's served me fairly well so far.

Here's a general question for those of you "on the other side." Although my daughters plan to help me post op, I'm hoping to return to full independence as soon as possible. For those of you who live alone, about how long did you need assistance post op? I'm sure there's a range of time depending of circumstances, but I'm hoping to be able to manage alone in a week or two. Meantime, thanks to John Smurda's fantastic post, I'm heading now to the Guided Imagery at the CC website.

Here's what's on my mind today: I'm really really serious about wanting a new body! No kidding! One with more stamina and less wrinkles topped off with a better brain would be swell. Needless to say, one without a defective valve too. But, most unfortunately, I'm told the line is incredibly long with no guarantees. Hmmmm ok, so back to reality.
Kathleen F and Rhonda R are on their way today - best to them both.
Soon Tammi G and I, followed soon by Dan G, will take a number and get rides into that scary room with the big lights and the people in gowns, gloves and masks.
Yikes! Too late to run away! We'll just have to believe all of you who say that the wait is (usually) the worst part. I'm ready, I think anyway, to get this show on the road and fly to Cleveland Clinic and let them do their thing. Every time my heart acts up and I feel crazy non-rhythmic beats, it confirms that, ok yes, it's time. I'm so grateful for this site and all the stories about recovery and various helpful specifics. Here's to each and every one of you, both those waiting and those recovering. Onward!

I noted some earlier requests for advice on what to take to the hospital. As a retired RN, here are my thoughts: leave valuables either at home or with whoever comes with you. Consider bringing: earplugs; underwear or possibly comfy pj bottoms (although hospitals provide both gowns and scrub pants with draw strings; i-pod or i-pad for music (have your family member watch over this); slippers with good soles; socks, perhaps a robe (although again, the hospitals can provide a second gown to use as a robe). Bring comfy clothes to wear on the great day you're discharged - this isn't a fashion show, it's about comfort and ease.Most important of all: bring a good and confident attitude - helps a lot! Good luck to all.

Best wishes and good thoughts and prayers to all of you going into surgery soon. We'll await news of everyones' recovery.

So today I received a request for patient information update at Cleveland Clinic. Yikes! This is real.
January 7 is coming, and although I'm anxious to get the show on the road, I'd rather just have a new body. Unfortunately, the line is long and for some strange reason, there are no new bodies available. Darn! So many of us need one. I'd go for a younger model, no wrinkles, and most important of all, a body without problems and a guarantee of no surgical requirements EVER. Throw in a bunch of new high resolution brain cells and a lifetime pain-free warranty..... oh, and affordable payments would be nice too.

My border collie, Zap and grandson, Alex

I'm in the waiting line along with so many of us. My mitral valve repair is Jan 7 at Cleveland. Some days I'm anxious to get there and get the show on the road, other days, I'm scared to be there. But for the most part I'm keeping busy, taking long walks most days, knitting lots of Christmas gifts and just carrying on. Good thoughts to all of you where ever you on on this journey.

my wonderful daughters, Michele and Jennifer and my grandson, Alex having fun at the OBX beach.

Whenever I visit this site, I feel both encouraged and frightened. Both emotions must be common to most every one of us. I think about each of you who've either had surgery already or soon will and in some way I almost feel I know you through your stories. I was an RN, retired this past March after having spent the better part of over 45 years in and around hospitals as both a nurse and, all too often, a patient. After a few years in critical care nursing, I found myself in NICU, caring for preemies, those impossibly darling and yet fragile babies. Then, after several back fusions left me unable to lift much more than a paperweight, I transitioned into case management, where I practiced a different kind of nursing, helping families and patients find options for care after hospitalization. The best thing about all those years in nursing was the connection to patients and families and, last but not least, the perspective which comes from witnessing so many life and death moments.
So you'd have thought I'd be ready to face my own heart surgery, right? Even though my mitral valve prolapse progressed to regurgitation about four years ago, I'd kept hoping there'd be no surgery. Silly me. Never hurts to hope, however reality must be faced. So now, here I am, waiting for the scheduled surgery at Cleveland Clinic in January. Bumps in the road? You bet. But thanks to the many courageous people who share their stories here, I have great hopes that by next spring, I'll be back to puttering in the garden, back to mountain hiking among the wildflowers. So thanks, each of you, for all your sharing. It helps so much.

I'd love to hear from people who went to cleveland clinic. I'm traveling there from Colorado on Oct 1 to see a cardiologist and have her look at all my previous tests. Hope to have surgery there once I change insurance.

I'm in Colorado and hoping to have mitral valve repair at Cleveland clinic, I have an evaluation appointment there October 1. Am on medicare and worried about cost.