8 Months today! Stamina coming back still, though easily tired. Walking a whole bunch. 5 miles most days. 3 on a bad day. 7+ on a good day. Priorities coming ...Read more
8 Months today! Stamina coming back still, though easily tired. Walking a whole bunch. 5 miles most days. 3 on a bad day. 7+ on a good day. Priorities coming out of surgery still feel like they are coming into focus. Time here is limited. How do we make the most of what we have?
KEVIN RYAN So true, David! Surgery in 2 weeks for me...and I know what you are saying. Keep up the great work! ... Read more
KEVIN RYAN So true, David! Surgery in 2 weeks for me...and I know what you are saying. Keep up the great work!
ConNie Romo 8 months in 3 days for me here. I feel you David. I forego walking when it started to get cold. I hav ... Read more
ConNie Romo 8 months in 3 days for me here. I feel you David. I forego walking when it started to get cold. I have been doing the stationary bike instead and can cycle 5 miles in 30 mins. On 2 resistance. Light strengthening and cardio as well. My up and down days are still frequent and have to rest quite a bit to regain my energy. Staying consistent is challenging. It's harder to find just a me time to focus on my recovery since I jumped back into full time mommy duties 2 months after surgery. Having a teenager and a toddler is more than enough to motivate me to get stronger and healthier.
Dan Marcantel Hey David 8 months for me too. We were a couple weeks apart in surgery. Good to see you doing well.
Ok, so 6 weeks ago I was in the ICU! Today, I actually feel pretty close to being a normal human, not a patient, or someone recovering from heart surgery. ...Read more
Ok, so 6 weeks ago I was in the ICU! Today, I actually feel pretty close to being a normal human, not a patient, or someone recovering from heart surgery.
I still get tired, and as I cut back on tylenol, I'll still get a little sore, but it's not much of anything.
I actually went in to work for a couple of meetings to get my head back in the game/start getting up to speed on business planning. Followed this with my first post-op cardiologist meeting here in Portland, today.
It was interesting because my previous cardiologist punted. They never met with me, just sent me to a surgeon...so now I have a NEW cardiologist.
A lot of today was getting to know each other, getting my history, what meds I'm on, etc. BP was good. Wound looks good. Lungs and heart sounded good. I'll do an echo and EKG in 6 weeks. They won't clear me to drive till week 8 because of air bags, which is kind of a bummer. They gave me a referral for Cardio Rehab if I want it, but due to the fact that I am walking between 5-7 miles a day right now, they aren't sure I will get much out of it. They also said the cardio rehabs here are for people a whole lot older than me.
What do you guys think, still worth it to go into rehab? I was imagining it might be good for shoulders and chest exercises and maybe just getting back up to running speed while in a controlled environment?
For anyone with a valve repair, have you had any issues with going back to a fully active lifestyle? I am some how psyching myself out about really exerting myself...I know it's silly, but I think the knowledge that active/athletic folks wear out tissue valves makes me wonder about the longevity of repairs and if exercise can cause accelerated wear?
Anyone else hyper aware of their heart beat? For what ever reason I can hear my heart beat super clear when I inhale laying in bed, but not exhale...so I was "losing" my 3rd and 4th beat, and completely freaking myself out for an evening...comical what we can convince ourselves of after surgery.
Hope everyone in recovery is doing well, and that everyone heading into surgery will have a fantastic weekend. Go have some great food, etc, as your appetite and taste will be off for some time.
Barbara Laurie David, congratulations!⣠And I'm glad you got a new cardiologist , no one s/b treated like that if ... Read more
Barbara Laurie David, congratulations!⣠And I'm glad you got a new cardiologist , no one s/b treated like that if possible..and it is. My Doc called me personally b4 and after surgery, and even now, when I don't have an appointment right away he calls to remind me he thinking of me and doing everything he can to get me recovered.
If you're already doing 5 miles a day maybe rehab would be boring to you. But I I've met such nice, fun people there over the years. Yes, much older, but the weight training, meeting different people and being monitored helps I think..see Adams book.
I was freaked out for weeks, because I could NOT feel/ hear my heart. I always could my whole life. My chest felt so still I once asked Dave if I was dead!!
My repair failed, so I'm no help..but I did want to say, yay!🎈🎈for David!
Congrats!â¤ï¸
David C Barb, I just read through your journal. OMG, you and your husband are hero level survivors. Super ins ... Read more
David C Barb, I just read through your journal. OMG, you and your husband are hero level survivors. Super inspiring to see you guys keep moving forward, and stronger together. Also, I am a sucker for charming dog pics, which your journal also has.
I also had a moment late night while still in the hospital [I will blame the meds] that I could't hear or feel my pulse and was concerned that I might also be dead! This can be a strange journey back to "normal."
Barbara Laurie David, Thank you for such encouraging words. Honestly, everyone who braves the unknown of OHS is a he ... Read more
David C Thanks, Catie! I put my headphones on, walk slow and spread it out through out the day. I'll get up i ... Read more
David C Thanks, Catie! I put my headphones on, walk slow and spread it out through out the day. I'll get up in the morning and walk a mile or two. Come in and sit for an hour or two, and repeat this until I go to bed. It all adds up.
Before I found out I needed surgery I'd spent the last year losing about 40 lbs by running a few miles a day. Of course, once I lost the 40 lbs, I found out I needed heart surgery. The irony...
Steven Dean David - exercise isn't going to wear out your repair, its only going to help your heart. My understan ... Read more
Steven Dean David - exercise isn't going to wear out your repair, its only going to help your heart. My understanding (as a young active person who just got a bovine valve) is that it is the body/blood chemistry not the exercise that is accelerating wear (and the newest generation valves are less susceptible to this). I had a previous valve repair and returned to an even more active lifestyle after (the repair unfortunately didn't take but that was known shortly after the operation before I was back to exercise).
David C Thanks for the insights Steven. Sorry to hear you needed a second surgery.
Darlene Smith David, I was told I do not need rehab and I'm 53. I had a mitral valve repair 5 weeks ago. I think ... Read more
Darlene Smith David, I was told I do not need rehab and I'm 53. I had a mitral valve repair 5 weeks ago. I think its up to you to decide and if you go and you think its not really doing anything, you can stop. I was going to go anyway until I found out I have visiting nurse health benefits and they sent me a PT to come to my house. He is helping me with strength exercises and figuring out how much to walk and exert etc. He has been great and I don't need to go out to an appt since I too am not yet driving because of the air bags. Your walking is amazing. But yes, I am super cautious about exertion and aware of my heart beat too. Its a little freaky and I keep thinking I'm going to break my heart. Soooo stupid!!! But I think the fears will ease up. We are still in the early recovery phase.
I recommend rehab. Having people monitor your heart gives you a lot of confidence. The rehab is really customized and I did not let it bother me that I was one of the youngest people in the place because I was there to get my strength back. I added a lot of strength training in addition to the walking.
No issues with the valve repair, it does take some time to really get back to normal. I found that at about 9 months was back to normal (pulse reduced to peroperative levels etc).
David C Darlene and Michael, thanks for the rehab thoughts. I think I'll check it out and see if it will work ... Read more
David C Darlene and Michael, thanks for the rehab thoughts. I think I'll check it out and see if it will work for me. I would love some guidance from a physical therapist on exercising my shoulders and back, and also figuring out when I can go back to things like planking, etc... Darlene, I appreciate that I am not the only one worried about "breaking" this newly fixed up heart...I think recovery is in my head as much as anything...
David C It's supposed to be 102º here today. I think I may not quite hit the same step count as I have been. ... Read more
David C It's supposed to be 102º here today. I think I may not quite hit the same step count as I have been. :)
Rita Savelis I hear you Dave. There is a "hyper awareness" that sets in after OHS with so many slight fears and fe ... Read more
Rita Savelis I hear you Dave. There is a "hyper awareness" that sets in after OHS with so many slight fears and feelings of "am I doing the right thing"... I say, do anything you feel like doing. And the desire and courage to do everything will slowly come back. And one day (for me it was over a year later) you won't think so much about doing physical things and the pounding or not pounding of your heart will be a new reality (that's okay) for you. It's weird, it takes time...
Rehab has it ups and downs. It's good and bad. Young people stand out. But it can be nice to be around strangers who have also had OHS....
I can't believe it's been 4 weeks since my surgery. Time is moving both fast and slow. I've settled into a routine of walking around my neighborhood, lounging ...Read more
I can't believe it's been 4 weeks since my surgery. Time is moving both fast and slow. I've settled into a routine of walking around my neighborhood, lounging in a chair, reading and playing guitar while I wait to heal up. Still have some pretty steep waves of fatigue come through, and I have some annoying sciatica this week, but it's improving. Too much awkward sitting in bed, I think, as I still don't like laying down flat. Regardless, this week I am really starting to feel like myself.
I'm starting to get my step counts up to what used to be low step count days for me, but at least there is an overlap. Looking forward to rehab and running/hiking real distances again.
My appetite is not entirely back, but I think that may be due to the blood thinners/beta blockers I am on post surgery kinda make everything taste a little weird. Tough to get excited about when flavors seem to be all over the map.
Mostly just feeling pretty grateful for the age we live in, and the surgery we are able to undergo. Hoping everyone is having a positive experience with this rather large life event.
Conrad Skowronski Keep up the recovery, David. I'm two weeks behind you in the recovery phase and I feel the same way. ... Read more
Conrad Skowronski Keep up the recovery, David. I'm two weeks behind you in the recovery phase and I feel the same way. Routine is picking up my step count, sleeping in a recliner and switching chairs often in various rooms to keep my back from getting too sore. Thought I'm eating well, but seemed to have lost a few lbs. since coming home. Trying to get my INR stable.
Elaine Cutri David and Conrad,
So glad to hear you're doing well. Keep up the good work and give your body time to ... Read more
Elaine Cutri David and Conrad,
So glad to hear you're doing well. Keep up the good work and give your body time to heal. I blamed my loose of taste and small appetite on the anesthesia. I'm also on blood thinners (forever due to mechanical valve) and my taste buds and appetite returned to normal.
Your soreness and fatigue will come and go, but it may take a few months. I thought I was back to 90% by 3 months out, 95% about 6 months and 100% around 9 - 12 months. Best wishes on a speedy and successful recovery.
David C Thanks guys. Elaine, I bet it is anesthesia working it's way out. It's strange to not be excited out ... Read more
David C Thanks guys. Elaine, I bet it is anesthesia working it's way out. It's strange to not be excited out food. I'm italian american. I live for food! I really appreciate the clarity on the long term you outlined. That is super helpful to see. I still can't believe the magnitude of the surgery and that we even get back to 90% so quickly. Totally amazing, to be honest. This week has just been exciting to really "feel like myself." Hard to describe, but it's a bit of a clarity to my thinking that I've missed, and a level of energy that's also been missing. Also, I am curious to see how I feel once recovery is complete. After years of a fairly large murmur/regurgitation, I genuinely felt "better" almost immediately after the surgery.
Catie B It's so good to hear of your progress, David. Sounds like you've done a great job building up your st ... Read more
Catie B It's so good to hear of your progress, David. Sounds like you've done a great job building up your steps. Trusting steady improvement and strength gains will continue for you!
Almost three weeks since surgery, and starting to feel pretty amazing. Pain is still there at different times during the day, particularly at night. Super uncomfortable ...Read more
Almost three weeks since surgery, and starting to feel pretty amazing. Pain is still there at different times during the day, particularly at night. Super uncomfortable in bed. My energy levels definitely come and go in waves.
As energy comes back, I am trying to walk more, and it's been nice to move about. I am walking very slowly, but pretty consistently.
My incision is looking ok, even if a bit itchy, though one of the tube holes is really not pretty to look at as it heals. As a side sleeper, I can't wait to be able to sleep reliably on my side. All and all, I am amazed at how quickly I am feeling better.
I honestly cannot say enough good things about the Cleveland Clinic and Dr Roselli. After 15 years with a murmur and occasional back flips in my chest, I love having a crisp and clear heart beat...with my own valve. I still get emotional when I realize Dr Roselli was able to save my valve and do some fairly intensive repairs around my aortic root. He said once he got in he was glad I hadn’t waited any longer, as the aortic root was getting very large. Amazing stuff. As for anecdotes of the whole procedure, I have a few:
As an out-of-towner, the morning started out walking at about 5:15 am from the Holiday Inn a few blocks away. I knew I was nervous, but I didn’t realize how nervous, until I was literally dry heaving while walking with my wife down Euclid Avenue to the Clinic. The staff was amazing and did their utmost to make it as “normal†as possible. They also do an amazing job of keeping family engaged through out the very long day while the surgery is happening.
One of the best things overall for me, is the fact that they call your family to come hang out with you as you come out of anesthesia. My first memories post op, are of my wife and my mother holding my hands, touching my forehead and talking with me. Truly an amazing and important emotional experience to come back to. I cannot emphasize how cool this detail was for me and my wife and family.
Another interesting anecdote, my father has a similarly dilated aorta, but has never been diagnosed with a bicuspid valve. As most of us on here know, that’s kinda not really how it works. During the pre-surgery meeting, I mentioned my father’s status to Dr Roselli who kind of raised an eyebrow. Apparently after my surgery, while I was in recovery and he was talking with my family, he told my dad to send him his records to give him a second opinion. Super kind.
Anyway. Just feeling pretty grateful to be here. Feeling like I got some pretty amazing care at the Cleveland Clinic. It was worth all the extra effort to get there from Oregon.
Catie B I'm really pleased to read how well things are going for you and about you gaining strength. Great to ... Read more
Catie B I'm really pleased to read how well things are going for you and about you gaining strength. Great to know also what a positive experience you had with Cleveland Clinic. Keep on healing...
Kevin Lee Hey David, glad to hear everything is going well. Keep on ticking!
Meredith Bray Yay! make sure you are standing up straight when you are walking/standing. This will help re-strength ... Read more
Meredith Bray Yay! make sure you are standing up straight when you are walking/standing. This will help re-strengthen your core muscles. When sleeping, make sure your head/neck/upper arms are supported. I remember vividly the first 4 weeks at home, laying in bed at night and sleeping about 4 hours at a time, but needing help getting up and not wanting to wake anyone for assistance. AND, not really wanting to relax and fall all the way asleep, because I was scared to move around because I thought I might hurt myself.
Also, my tube wounds were the ugliest, and took the longest to heal. The still itch on rainy days!
-Meredith
I am so pleased to here that everything went well and your recovery is moving alone quite nicely. Wis ... Read more
I am so pleased to here that everything went well and your recovery is moving alone quite nicely. Wishing you all the very best. So glad you had just a positive experience at the Cleveland Clinic..
Made it though. Dr Roselli and his team were able to repair my aorta. I am ecstatic! So tired, so I'll be brief, but talking some mini -walks, had tubes removed ...Read more
Made it though. Dr Roselli and his team were able to repair my aorta. I am ecstatic! So tired, so I'll be brief, but talking some mini -walks, had tubes removed today (wow that feels so much better). The team at th Cleveland Clinic is amazing. From the moment I've arrived to my daily care. Lots of anecdotes to share once typing isn't quite so exhausting. Thanks so much for all the support.
Emily Rowley That is great! 😠It is good your Surgeon tried to Repair your Valve first and succeeded. The mini ... Read more
Emily Rowley That is great! 😠It is good your Surgeon tried to Repair your Valve first and succeeded. The mini walks will help your recovery and try prevent Lung Infections. Glad to hear you are doing well ☺
Adam Pick Awesome! So glad Dr. Roselli was able to take care of you. Fyi, I've known Eric for over 25 years. We ... Read more
See patient reviews, physician biography and videos of Dr. Eric Roselli, heart surgeon, with phone number and address in Cleveland, Ohio.
Nap Garcia I wasn't sure whether to tell you of my own experience prior to your own surgery since I'm about two ... Read more
Nap Garcia I wasn't sure whether to tell you of my own experience prior to your own surgery since I'm about two weeks post op, but did it feel to you like once you rolled into the operating room, did it seem like you just blinked and it was already done? Mine felt that way, I thought I was out only a few minutes but when I asked my wife the time after I woke up, it was almost 7 hours later, 4 hours in surgery and about a little over 2 hours in recovery. Welcome to the other side of repair and have a speedy, uneventful recovery!
Richard Puckett Sounds like you got the best outcome you could have wanted! That's great. They are really good at C ... Read more
Richard Puckett Sounds like you got the best outcome you could have wanted! That's great. They are really good at Cleveland Clinic. You'll be discharged in no time once the tubes are out.
Petey Bello David, it's great that your surgery went better then expected "a repair"! You will be back on your fe ... Read more
Petey Bello David, it's great that your surgery went better then expected "a repair"! You will be back on your feet in no time. The best to you for a speedy recovery! I had my mitral valve repaired so I know the excitement of waking up & hearing the good news that they were able to do a repair!
Congratulations to you! Glad to hear you are doing well...
Elaine Cutri Yay! So glad the surgery was a success. Prayers and good thoughts for a speedy and successful recover ... Read more
Elaine Cutri Yay! So glad the surgery was a success. Prayers and good thoughts for a speedy and successful recovery!
David C @Emily, amazing surgeon. Did a "david" procedure which seems pretty appropriate.
@Adam, He and his te ... Read more
David C @Emily, amazing surgeon. Did a "david" procedure which seems pretty appropriate.
@Adam, He and his team are incredible. Thanks for doing all you can to normalize all of this. All your work has been invaluable. I have some more anecdotes to share when typing isn't so exhausting.
@Nap, it's crazy. The whole thing has been the best experience it could be. I am amazed at the swiftness of moving through recovery.
@Richard, it's amazing. I got discharged today!
@Petey and Elaine, thanks so much! It's amazing to have a repair. My sense of gratitude for this outcome is overwhelming.
*** Editing 8 hours later to write what I should have written in the first place. Some responses may seem odd now. ***
Man, I thought I had made peace with ...Read more
*** Editing 8 hours later to write what I should have written in the first place. Some responses may seem odd now. ***
Man, I thought I had made peace with a mechanical valve and blood thinners. I met with my surgeon today and he really thinks he can repair my valve!!! I almost started crying. Now the funny thing is the question of back up valve: mechanical versus biological. I have been thinking mechanical/on-x all along, but I am now leaning towards a biological that might last twenty years and position me to be able to have TVAR down the road? My surgeon was feeling like the mechanical will likely need to be replaced as well in more like 30 years. So then the question is, do I want a surgery at 60 or 70? Do I want a blood thinner? Man, funny to have to come up with an answer that I thought I had made peace with already. Any thoughts and opinions are very welcome.
Richard Puckett One of the reasons you are at the Cleveland Clinic is to have the best chance of a repair. That and ... Read more
Richard Puckett One of the reasons you are at the Cleveland Clinic is to have the best chance of a repair. That and a low mobidity and mortality rate was the reason that I went to the Cleveland Clinic. I hope that you can get your valve repaired!
Nap Garcia I had a repair done. The approach from both surgeon's I consulted with is that a repair is always the ... Read more
Nap Garcia I had a repair done. The approach from both surgeon's I consulted with is that a repair is always the first preferred option. As cool as a mechanical replacement valve may sound, I don't want to be on blood thinners, but there's nothing wrong with that being the only option available for others, as the decision between repair and replace depends on each individual's circumstance. The first surgeon consulted with the second surgeon, who ended up doing my repair, as he was 99% certain he could successfully repair it, so kudos to the first surgeon to step aside and refer me to a colleague who he thought would do a better job in terms of repair. After surgery he told me the repair went so well that it should last the rest of my life. I'm 50.
Bob Fessler My opinion and it is strictly that is I would get the valve repaired and keep the pig valve as a fall ... Read more
Bob Fessler My opinion and it is strictly that is I would get the valve repaired and keep the pig valve as a fall back if they can't do the repair with any certainty that it will last. I'm 65 and counting on TAVR being much improved/reliable/safe in the next 20 years.
Emily Rowley That's great news they might be able to Repair your Valve. Sometimes they don't fully know until in y ... Read more
Emily Rowley That's great news they might be able to Repair your Valve. Sometimes they don't fully know until in your Operarion. Like you I spent ages trying to decide on what valve, I choose a Pig's Valve but found out I could only have a Mechanical Valve in my Heart. So I was prepared, but ended up with a Repair. Always keep a back up Valve in and let your Surgeon know just in case. ☺
David C Thanks all. My apologies for any confusion in how I wrote the post. I am absolutely going for the rep ... Read more
David C Thanks all. My apologies for any confusion in how I wrote the post. I am absolutely going for the repair first. I just wasn't expecting so much more information about the fallback replacement valve. I think I am going to go biological as the fall back. I had prepped myself for mechanical, but in meeting with the surgeon, it became clear that no-path is guaranteed. I like the idea of a blood-thinner-free life, and that TAVR could be a path for repair if needed down the road. Man. I am both terrified and excited. This is a rather strange, fast journey. Looking forward to writing from the other side of this thing. Thanks again for all the advice and support on here.
Barbara Laurie Hey David, I really hope that repair goes great!! But, if they have to use the bio valve you will hav ... Read more
Barbara Laurie Hey David, I really hope that repair goes great!! But, if they have to use the bio valve you will have to take blood thinners for three months, but that's no big deal! Hey, that repair will be awesome!! I know everyone's thrilled for you to have that chance. â¤ï¸ðŸ¾â¤ï¸
Peggy Whitecotton I had a bovine valve and did not have to take blood thinners at all. I was told that sometimes you do ... Read more
Peggy Whitecotton I had a bovine valve and did not have to take blood thinners at all. I was told that sometimes you do but not always.... I was lucky I guess.... I only have to take 81mg of aspirin
Petey Bello David, that is great news if they feel they can repair your valve. Of course they never know until th ... Read more
Petey Bello David, that is great news if they feel they can repair your valve. Of course they never know until they are in there, but at least it's a good start! I had a repair but chosen the tissue if needed because I didn't want to do blood thinners the rest of my life. It is a personal choice for all of us. I pray for you for a repair! You are going to one of the Best Hospitals!
God Bless!
Rita Savelis Gosh, one never has the answer to the existential question of tissue vs valve. I am hoping you will g ... Read more
Rita Savelis Gosh, one never has the answer to the existential question of tissue vs valve. I am hoping you will get your repair. This is what we all wanted. No path is guaranteed. Anything can happen with any valve. You just have to move forward knowing that you will continue to have second thoughts. Life goes on and one accomodates to most of it.
Finished pre-op testing today. Met with the cardiologist at CC, and had my heart cath. All clear and in agreement with treatment. I will be meeting with the ...Read more
Finished pre-op testing today. Met with the cardiologist at CC, and had my heart cath. All clear and in agreement with treatment. I will be meeting with the surgeon tomorrow, and surgery on Thursday. This is all relatively insane. I had the first echo which discovered this in early May, and had to come to terms with this rather life changing surgery between the first echo in May, and this Thursday. I am grateful for the knowledge and stories on this board, as well as finding friends and family who have gone through this already.
Richard Puckett It's hard to believe that only three weeks ago I was where you are today in Cleveland. They are very ... Read more
Richard Puckett It's hard to believe that only three weeks ago I was where you are today in Cleveland. They are very good at what they do, and you'll make it through OK. Keep the faith and determination to recover quickly.
David C Thanks Richard. I appreciate the note. So far I have been nothing but impressed with the doctors and ... Read more
David C Thanks Richard. I appreciate the note. So far I have been nothing but impressed with the doctors and staff of the Cleveland Clinic. The care and attention to everything is fantastic. I look forward to looking back on my surgery three weeks from now!
Ron Broadhead That's a great attitude. Looking forward (to looking back) is so very helpful and beneficial.
Elaine Cutri You are on a whirl-wind of changes, but it sounds like you are very grounded. If you got a CT as part ... Read more
Elaine Cutri You are on a whirl-wind of changes, but it sounds like you are very grounded. If you got a CT as part of the pre-op, Dr Roselli may ask if you want to see the 3D image of your heart - say yes! It's very cool. Keeping good thoughts and prayers for you and your family.
Emily Rowley Wow that is quick, do you feel prepared? I wish you the warmest of wishes for your Operation and reco ... Read more
Emily Rowley Wow that is quick, do you feel prepared? I wish you the warmest of wishes for your Operation and recovery. What are you having done with your heart? ðŸ™ðŸ¼
David C Thanks Elaine and Emily. Yes. Insanely quick imho, but I am an impatient human. This speed is probabl ... Read more
David C Thanks Elaine and Emily. Yes. Insanely quick imho, but I am an impatient human. This speed is probably for the better. I just met with my surgeon and I am getting a lot of work done to my aorta and aortic root [replace with dacron] and right now it looks like I got the awesome news that my surgeon thinks he can repair the valve!!! I wasn't sure what to expect, but a repair would be amazing!!! Again, if anyone has an inclination I would recommend the inconvenience of coming to the Cleveland Clinic. So many experts all working as a team. Kind of remarkable.
Emily Rowley You're welcome 😠I'm a patient person and it was hard for me waiting so it would be harder for you ... Read more
Emily Rowley You're welcome 😠I'm a patient person and it was hard for me waiting so it would be harder for you. Is a Dacron Root Replacement natural tissue or artifical material and do Aortic Roots last forever? I seen your news about a possible Valve Repair which is great! As I replied to in your other Post, I had a (two) Repairs 😠I have heard good things about the Cleveland Clinic. That is wonderful and what you need. ðŸ‘ðŸ¼
David C @Emily, I was scrolling through my journal and realized I some how had missed your last note. Dacron ... Read more
David C @Emily, I was scrolling through my journal and realized I some how had missed your last note. Dacron is a synthetic material that should outlast the organic matter in my body. :) The Aortic Root repair Dr Roselli was was able to do should last as well. He said that going into this surgery, the aorta and root were a big deal but would only need to be addressed once.
It's getting real. Made it to Cleveland today. A full day of imaging and tests tomorrow. Mucho pre-op stuff next week, and surgery a week from today, on the ...Read more
It's getting real. Made it to Cleveland today. A full day of imaging and tests tomorrow. Mucho pre-op stuff next week, and surgery a week from today, on the 7th.
David, all the very best. I recently met with Dr. Roselli, and he is a a warm caring Doctor. He and h ... Read more
David, all the very best. I recently met with Dr. Roselli, and he is a a warm caring Doctor. He and his team at the Cleveland Clinic are wonderful! He will be my surgeon for my AVR on August 31st. Going for a mech valve this time around.
David C Thanks Guys. Most appreciated. Just wrapped a day of pre-op testing and imaging work. Cleveland Clini ... Read more
David C Thanks Guys. Most appreciated. Just wrapped a day of pre-op testing and imaging work. Cleveland Clinic is fantastic. Smooth sailing through a full day of work. I have to say the humane professionalism and attention to all the details here is certainly a confidence booster. Going to chill here this weekend and wait for my family to arrive, then cath on Tuesday.
Elaine Cutri Hi David - Dr Roselli fixed up my ascending aorta and arch May 2015 (and a new aortic valve and repai ... Read more
Elaine Cutri Hi David - Dr Roselli fixed up my ascending aorta and arch May 2015 (and a new aortic valve and repaired my mildly leaking tricuspid valve). The CC cardiologist I saw for my pre-op appointment said Dr Roselli could think on his feet and I wasn't a tough case for him (this was going to be my 4th OHS). Dr Roselli did have more to repair than originally thought, but he did a great job! I did not want to rush home, so I assumed I would be there 1-2 weeks after discharge. I didn't want to end up in the ER of a different hospital and different team of doctors if something came up. I ended up getting readmitted due to fluid behind my right lung about a week after discharge. Since this was my 4th OHS my body took it upon itself to protect me and produce a sack of fluid behind my lung. Since I'm on blood thinners, a 20 minute procedure required a weeks stay in the hospital due to weening off and back onto Coumadin. I hung around for another 5 days after that discharge, then headed home. I would have been comfortable going home about 1 week after discharge.
They will give you suggestions to make the flight home as comfortable as possible. The concierge at CC is a great resource.
Dr Roselli offered my a tissue valve to replace the 22 year old mechanical valve (it was undersized and reached it's normal lifespan). I went with his other choice, an On-X mechanical valve that has a lower INR range than my previous mechanical valve. It's working great, but a little loader than I'm use to, but it's all good!
I think you're in very good hands with Dr Roselli and his awesome team (other Drs, RNs, and all the care givers). The RNs are your advocate as well as your family. Speak up if you have questions or concerns.
One night I was getting a blood draw and the tech was having difficulties and causing me pain, I sent them away even though they said they were the only one available at that time. My RN came in and said "no problem, you had every right to turn that person away. We'll get you taken care of gently" and they did!
See my story for more details. Keep us posted. Best Wishes!
Elaine Cutri If you need something to do and like music, check out the Rock and Roll Hall of Fame. It's a hoot! Th ... Read more
Elaine Cutri If you need something to do and like music, check out the Rock and Roll Hall of Fame. It's a hoot! The Cleveland art museum in University Circle (about a mile away, shuttle or walk) is very lovely and a nice place for lunch in the indoor atrium.
David C Thanks, Elaine. Just read your story. AMAZING and inspiring. Dr Roselli wants me to have the cath [Tu ... Read more
David C Thanks, Elaine. Just read your story. AMAZING and inspiring. Dr Roselli wants me to have the cath [Tuesday] before we meet. I am looking forward to getting to discuss the whole thing with him in person.
I've been walking since I got here yesterday trying to get the lay of the land. Discovered little Italy has some comfort foods that I quite enjoy. Walked around University Circle, and am looking forward to checking out the botanical garden and art museum. Lunch at the place you noted in the atrium sounds fantastic to me. Thanks again for the good thoughts and sharing your experience.
Elaine Cutri You're welcome. There is some wonderful food in Cleveland. We enjoyed Little Italy and Table 45 (at I ... Read more
Elaine Cutri You're welcome. There is some wonderful food in Cleveland. We enjoyed Little Italy and Table 45 (at Intercontinental Hotel) and Lola's on 4th St (?) in Downtown (Michael Symon's place). We used Uber to get around. Has the GOP convention started yet?
David C I've got Michael Symon's places on my radar! Maybe tomorrow. Kinda feel like once Tuesday and the cat ... Read more
David C I've got Michael Symon's places on my radar! Maybe tomorrow. Kinda feel like once Tuesday and the cath rolls around, I'll probably lose my appetite. :) I've been walking about 8-10 miles a day as a coping mechanism. Boosts my appetite for now. Thankfully no GOP convention just yet. I do get the big old boot from my hotel on the 15th when that does get started. I have some friends and family here that we can stay with if I need to prolong my Cleveland experience.
Cathleen Weed Best wishes for your surgery! Hope you enjoy your 4th of July weekend with family and friends!
David C Thanks Cathleen. Due to the fact that I seem to only focus on what ever is next on this train, I am c ... Read more
David C Thanks Cathleen. Due to the fact that I seem to only focus on what ever is next on this train, I am currently dreading the heart cath on Tuesday more than the actual surgery later in the week. It will change into anxiety around the surgery once the angiogram is done. :)
Wanda Mroz Best of luck to you.... The heart cath is nothing in the big scheme of things.... You will do fine.ð ... Read more
Wanda Mroz Best of luck to you.... The heart cath is nothing in the big scheme of things.... You will do fine.💞
David C Thanks, Wanda. I talked to one of the nurses this evening and they told me not to worry. At all. Mini ... Read more
David C Thanks, Wanda. I talked to one of the nurses this evening and they told me not to worry. At all. Minimal discomfort. I think the concept freaks me out some how...like more than cracking open my sternum and putting me on a heart lung machine for a few hours...that makes a ton of sense, right?
Wanda Mroz I felt the same... Now I realize how it really is nothing. 😊💞
Cathleen Weed I totally understand that! That's actually a good way to do it...one event at a time ;)
Kevin Lee Hey David, realized today was the day for you. Sending prayers for a wonderful surgery and quick rec ... Read more
Kevin Lee Hey David, realized today was the day for you. Sending prayers for a wonderful surgery and quick recovery.
Still working out insurance. My wife, the financial planning people who help with this at the Cleveland Clinic, and some of the advocates my office work with ...Read more
Still working out insurance. My wife, the financial planning people who help with this at the Cleveland Clinic, and some of the advocates my office work with have been champs, and may have found that I am actually in network by virtue of what umbrella company owns who. Vacation on Cape Cod for a few days before I head to Cleveland for pre-op work on the 1st, and surgery on the 7th. Looking forward to discussing what surgery Dr Roselli will recommend. I am mentally prepared for mechanical valves, though a different, and respectable second opinion believes the aortic aneurysm and bicuspid valve could possibly be repaired. I'd love that, but mostly I want to be alive and kicking and able to get back to running/being active as soon as possible.
I have my hotels locked in, and have my flight to Cleveland set. Trying to figure out when I leave. Has anyone had to fly in and out of Cleveland? How long did you stay before getting on your plane home?
Rob Gundlach David, I had surgery with Dr Svensson last October for an aortic valve replacement. My stay was 10 d ... Read more
Rob Gundlach David, I had surgery with Dr Svensson last October for an aortic valve replacement. My stay was 10 days, flew in on a Sunday, preop on Monday, surgery on Tuesday, released the following Tuesday and cleared for travel on Wed. Probably could have used another day or so. CC has a limo service that will pick you up and drop you off at the airport when in for surgery. Just ask your coordinator. Hope this helps & best of luck to you. CC is a great hospital.
Amy Dorsey Yes! Check out the heart center on their website and take a virtual tour. It's a beautiful facility! ... Read more
Amy Dorsey Yes! Check out the heart center on their website and take a virtual tour. It's a beautiful facility! You will be impressed!
Michael Meyer David, I stayed 7 days for mitral valve repair. I was out of the hospital in five (Monday surgery, d ... Read more
Michael Meyer David, I stayed 7 days for mitral valve repair. I was out of the hospital in five (Monday surgery, discharge Friday) and stayed in a hotel near the campus for two nights.
I spent the weekend before spending time with my family and relaxing in Cleveland. Glad to see you going on vacation, I found the relaxation a couple of days before surgery to be helpful.
Mary K I spent two weeks in Cleveland, and was glad for it. Had an AVR with a tissue valve. I agree with the ... Read more
Mary K I spent two weeks in Cleveland, and was glad for it. Had an AVR with a tissue valve. I agree with the others, CC is top notch.
Richard Puckett I am leaving tomorrow after mitral valve repair and LAD artery bypass surgery. My surgery was last Fr ... Read more
Richard Puckett I am leaving tomorrow after mitral valve repair and LAD artery bypass surgery. My surgery was last Friday. CC is providing a limo ride to the airport, as they did from the airport three days prior to surgery. I have stayed at Incontinential Conferce Center, which is connected to the CC. We checked out of the hotel when it was just my wife and myself. She stayed in the room with me those days. Hopefully, this is helpful.
David C Thanks so much, everyone. This is super helpful. Sorry for my delayed response. We are doing a few da ... Read more
David C Thanks so much, everyone. This is super helpful. Sorry for my delayed response. We are doing a few days on Cape Cod with my family before heading to Cleveland, and cross country travel has been a bear.
Hello! If all works out with my health insurance [out of network] I'll be at the Cleveland clinic in about two weeks with surgery for a bicuspid aortic valve ...Read more
Hello! If all works out with my health insurance [out of network] I'll be at the Cleveland clinic in about two weeks with surgery for a bicuspid aortic valve and a dilated aorta with Dr Roselli.
Coming from Portland, Oregon, one of the questions that has been nagging at me, is purely logistical. How long do people typically stay in Cleveland? How long until people have flown? We've been busy taking care of insurance and aligning calendars [kind of a grabbing an opportunistic opening in his calendar], that I haven't been able to look too closely at the logistical details. Any thoughts, or experiences here, would be appreciated.
Also, if anyone has had any experience pushing back on their insurance companies for out of network coverage, I'd love any insights. Thanks!
Oddly enough, the surgery isn't stressing me out as much as the insurance and planning.
Amy Dorsey Hopefully you get all of that figured out in two weeks and not any longer because the Republican Naio ... Read more
Amy Dorsey Hopefully you get all of that figured out in two weeks and not any longer because the Republican Naional Convention is in Cleveland in July and all of the hotels are sold out! Luckily I haven't had issues with insurance like that however I almost couldn't get an appointment there in July because of that convention.
David C Yeah. I am worried about the RNC. It looks like the hotel attached to the CC still has a few openings ... Read more
David C Yeah. I am worried about the RNC. It looks like the hotel attached to the CC still has a few openings. I am hoping to lock this up this week. I have a regional insurance. There's a few surgeons in PDX, but it's mostly cancer facilities, not heart out here. The local hospitals don't even post their outcomes the way most hospitals do, and they are not as well ranked on the various hospital ratings online. I am getting prepared to spend many thousands of $$$ because of this. :(
Gary Stripling Watch out for balance billing for out-of-network providers. My OHS was out-of-network as well and the ... Read more
Gary Stripling Watch out for balance billing for out-of-network providers. My OHS was out-of-network as well and the billing is a complete mess. Fortunately, my amazing wife is tenacious at getting them to properly bill out everything. Ten months later and we're still fighting but winning little by little! You have to stay on top of it or they'll take advantage of you during your most vulnerable recovery period.
Bob Fessler David...I read that Kaiser Permanente Sunnyside Medical Center in Clackamas Oregon was one of the top ... Read more
Where should you go for heart surgery? Consumer Reports hospital Ratings can help you find the best one.
David C @gary, thanks. Yes, I am finding that it is in insurance company's best interest to avoid providing s ... Read more
David C @gary, thanks. Yes, I am finding that it is in insurance company's best interest to avoid providing service and avoid making any of this easy. @Bob, thanks for that link. I have been looking at the US News report, and none of the Oregon hospitals rate much above the 50% mark in terms of quality of care. Lots of risk of infection and complications. A friend of mine's mom is a cardiac nurse in NYC, and the advice I was going on is go for the best, care as it will dramatically cut down on recovery time. Hence my desire to go to Dr Roselli/Cleveland.
Petey Bello David, just a thought: I went to Stanford & my surgeon was Dr. Woo. (is closer to you in Oregon) He i ... Read more
Petey Bello David, just a thought: I went to Stanford & my surgeon was Dr. Woo. (is closer to you in Oregon) He isn't as well known 'nationally' as the Drs at Cleveland Clinic. But he is exceptional, is head of dept at Stanford (which is another exceptional hospital). He is known for his difficult repairs & was doing 400 surgeries a year. There are U-tube videos online about him. With that said: I planned on staying for two weeks. I got an open return airline ticket incase I was able to leave earlier. I was, I flew home at 10 days which is the earliest they let you leave. My care was wonderful. My husband stayed close to the hospital & took the hotel shuttle back & forth. It was a life saver for him!
Good luck!
David C @Petey, thanks for the reply. That is helpful, and I think I have a plan forming with regards to retu ... Read more
David C @Petey, thanks for the reply. That is helpful, and I think I have a plan forming with regards to returning to Oregon. I have some family a few hours away that I can stay with and nudge my return flights out.
I would love to go to Stanford. My health insurance seems to believe that everything I will need will be in Portland. It's beyond frustrating, considering most of the Surgeons here do not perform many of these per year. The hospital that does the most, OHSU, also ranks pretty poorly on the US News report, as well as the consumer reports rankings. Just doesn't seem like something I want to mess around with. I'll be getting a little more direct with my insurance today. As it is I think I am looking at about $20k for this wonderful experience in Cleveland, out of network. :)
David C I think insurance is starting to get aligned. Still quite a bit out of pocket, but at least surgery i ... Read more
David C I think insurance is starting to get aligned. Still quite a bit out of pocket, but at least surgery is scheduled and a plan is in place. Wow. This certainly happened fast. A few weeks ago I had no idea I had a problem, now I am heading into surgery...wild. Hopefully I will avoid completely losing it. :)
Amy Dorsey That is quick! I found out in March and my Cardiologist sent me for multiple tests spread out over w ... Read more
Amy Dorsey That is quick! I found out in March and my Cardiologist sent me for multiple tests spread out over weeks and weeks before he gave me the go ahead to start looking for a surgeon. I feel like the time has passed at a snail's pace! BUT...it has given me time to plan for everything. Luckily the CC is in my network and I have met my out-of-pocket expenses from all those previous tests so everything should be covered...JUST IN TIME..like 1 week before my insurance rolls over!
David C @Amy. My aorta dilation/aneurysm is right on the edge of mandatory surgery. My primary care physician ... Read more
David C @Amy. My aorta dilation/aneurysm is right on the edge of mandatory surgery. My primary care physician sent me to a cardiologist, as well as to some echo's and CT scans. The cardiologist actually passed and sent me straight to a surgeon here. It looks like you are at the end of July. We'll miss each other by a few days, unless you are getting there early. If all works out, my surgery will be two weeks from Thursday. Nutty...
Petey Bello Good luck to you David. It is a smart idea to go to the best hospital & surgeon. This is a serious op ... Read more
Petey Bello Good luck to you David. It is a smart idea to go to the best hospital & surgeon. This is a serious operation & you want to go to a surgeon that performs a lot of these type surgeries!