PVCs 4 yrs after surgery? I'm a little over 4 years since my aortic valve replacement, aortic aneurysm repair, left atrial clip. Also had an ablation for atrial ...Read more
PVCs 4 yrs after surgery? I'm a little over 4 years since my aortic valve replacement, aortic aneurysm repair, left atrial clip. Also had an ablation for atrial flutter about 3 years ago. I've been doing great for the past 3 years and now out of the blue seemingly, I've started PVCs, sometimes as many as 10 per minute. I really hate having these. I'm not able to get into the cardiologist until October 3rd. I normally wouldn't worry so much if I had a "normal" heart but with all I've had in the past, PVCs are scary. I'm not on any meds, although I had a course of prednisone steroid and a course of penecillin for a painful tooth crown recently and am wondering if that could be the cause... Anyone else have PVCs long after their surgery?
Susan Lynn Ann - I had PACs two years after my mitral valve repair. I didn't have any symptoms, but my cardi... Read more
Susan Lynn Ann - I had PACs two years after my mitral valve repair. I didn't have any symptoms, but my cardiologist had me wear a Zio monitor for two weeks to determine the significance. I was put on Metoprolol succinate and it reduced them to less than 1%. I wore the Zio monitor again last year, and my PVCs were now increased, but they're not frequent enough to be treated. I guess they can develop at any time. Best of luck resolving yours.
Ann Crone thanks for responding to my post. I've had metoprolol in the past but can't tolerate it, blood press ... Read more
Ann Crone thanks for responding to my post. I've had metoprolol in the past but can't tolerate it, blood pressure gets too low. I'm sure there is something else they can try though.
Hi all, been awhile since I last posted. I had aortic valve replacement (went with bovine) and aortic aneurysm repair in July 2019. I had a decent recovery ...Read more
Hi all, been awhile since I last posted. I had aortic valve replacement (went with bovine) and aortic aneurysm repair in July 2019. I had a decent recovery and was even doing some jogging this July and August. However gradually I've been having more and more incidences of atrial flutter. The most recent required a shot of adenosine for cardioversion. When I had my surgery I opted NOT to get the MAZE procedure because I'd not really suffered from arrhythmia and my surgeon was okay with that decision. Now I'm probably looking at cardiac ablation for the atrial flutter. Has anyone else had the issue and did this procedure help you? I'll admit I'm a bit discouraged by this as I was just hoping to continue to get better and stronger.
Marie Myers Sorry you are having more flutter. I have not had cardiac ablation, but my boss had it done Successfu ... Read more
Marie Myers Sorry you are having more flutter. I have not had cardiac ablation, but my boss had it done Successfully for supraventricular tachycardia. My uncle had similar success with ablation for a fib a few year ago. Hang in there and let us know what is planned.
Rose Madura Hi Ann. I had bouts of Aflutter in the six weeks post op. Was able to correct itself. Regarding abl ... Read more
Rose Madura Hi Ann. I had bouts of Aflutter in the six weeks post op. Was able to correct itself. Regarding ablation, I had one I 2007 for supraventricular tachycardia and the outcome was very positive. And I've had no issues either since. It was like a heart cath exceot I was in a good twilight sleet when during my heart carh, I waa awake. Please keep us posted.
Well here I am at 4 weeks and a couple of days post surgery (aortic valve replacement/aortic aneurysm repair). I walk about 30 minutes a day, which is what ...Read more
Well here I am at 4 weeks and a couple of days post surgery (aortic valve replacement/aortic aneurysm repair). I walk about 30 minutes a day, which is what they told me to do prior to cardiac rehab which starts in a couple of weeks. Still on amiodarone and metoprolol (when I can take it because often my blood pressure is too low). Still feel that I have very little energy and still have a lot of achiness in my chest. I've had some very good days in which I probably overdid but I seem to be having a short run of not so good days this week. It sure gets discouraging at times and it's hard to be patient waiting for things to improve. I wonder how much the drugs I'm taking are keeping me down. Did anyone else notice things improved a great deal once off the drugs? Thanks for listening/reading my post.
Bradley Dunn Are you getting enough iron in your diet? Everyone recovers at a different rate.
Susan Richards I’m exactly 5 weeks out today. I still have pain in my sternum, although it is getting better, and ... Read more
Susan Richards I’m exactly 5 weeks out today. I still have pain in my sternum, although it is getting better, and I’m still very tired, especially in the late afternoon/evening. I’m also on Amiodarone and Metoprolol, but I was already on the metoprolol before the surgery. I REALLY want to get off the Amiodarone. I feel like it has something to do with my fatigue and a kind of “unwell” feeling I have a lot. I’m also taking the blood thinner Pradaxa, which I wish I could quit as well, because I feel like ibuprofen would really help the pain more than Tylenol and you can’t take ibuprofen with Pradaxa.
Rose Madura I was never as glad as when they took my off Amiodadrone. I hated how it made me feel. In time, th ... Read more
Rose Madura I was never as glad as when they took my off Amiodadrone. I hated how it made me feel. In time, the dosages will be reduced, most likely. For me, it was about 2-1/2 months. Now I only take 12.5 of Metoprolol and 2.5 of Amlodipine for BP plus baby aspirin. Hang in there.
Marie Myers I bet you will start to feel more energy after a couple weeks of cardiac rehab. It is slowly going to ... Read more
Marie Myers I bet you will start to feel more energy after a couple weeks of cardiac rehab. It is slowly going to improve your stamina. Hang in there, it is hard to be a patient patient...
I was also on iron for a few weeks after surgery, since my blood count was a little low after discharge. I began to feel more like myself when my blood count came back to normal in a month or so.
Ann Crone Thank you all for the encouragement, I appreciate it.
Liz Draeger Hi Ann! Read your post. I am almost 16 weeks post 3 valve OHS.
At 1-2 months very very tired. I wou ... Read more
Liz Draeger Hi Ann! Read your post. I am almost 16 weeks post 3 valve OHS.
At 1-2 months very very tired. I would tire exercising and then go home and rest. I tried not to overdo just cardiac rehab and home. Little at a time they increased my exercise. I was on metropolol which I am still on. Hang in there until you are 6 weeks and then 8 weeks post op.
You will see changes then. I thought my recovery was very very slow but at 12 weeks things started to change. Yeah! I have been told it will take a solid 6 months for my recovery and thinking that’s about right. Probably longer due to 3 valves so your recovery should be shorter!
Eat plenty of protein and rest.
This question has probably been asked a lot but what kind of Fitbit are some of you using for your recovery stats? I was looking at the Fitbit Versa and the ...Read more
This question has probably been asked a lot but what kind of Fitbit are some of you using for your recovery stats? I was looking at the Fitbit Versa and the Fitbit Inspire HR.
Mike Roskowinski I use the Versa. I love it cause it is waterproof
Michele Ripley Ann: I am a new user of the Versa but have not been using all the apps. I like the waterproof featur ... Read more
Michele Ripley Ann: I am a new user of the Versa but have not been using all the apps. I like the waterproof feature also. I think it takes a while to learn any new technology.
Ann Crone Thanks Mike and Michele, I look more closely at Versa.
John Hannon I use a Fitbit Charge 3 and love it. The main selling point for me is the battery life - it lasted 1 ... Read more
John Hannon I use a Fitbit Charge 3 and love it. The main selling point for me is the battery life - it lasted 10 days the first few months and now it's down to 6-7 days. It's waterproof, works in the water, and gets text messages and phone call notifications from your phone. I considered an apple watch because of the EKG feature but the need for daily charging was a no go for me. And I feel like I know my heart well enough that I'll be able to tell if something is not right with the help of the heart rate monitor.
Tom McDonald Versa, love it. You can also sync with the strava app
Ann Crone John and Tom, thanks. I haven't looked at the FBCharge 3 yet.
Susan Richards I just got the Versa about a week ago. Just using the basic stuff for heart rate, steps, and distance ... Read more
Susan Richards I just got the Versa about a week ago. Just using the basic stuff for heart rate, steps, and distance right now. I really like it so far.
Hi all, I'm coming up on 3 weeks post surgery for aortic valve replacement, aortic aneurysm repair and left atrial appendage clip surgery. Surgery went well ...Read more
Hi all, I'm coming up on 3 weeks post surgery for aortic valve replacement, aortic aneurysm repair and left atrial appendage clip surgery. Surgery went well and recovery seems on schedule except I've had some incidences of atrial fibrillation - one 12 hr episode while still in ICU and then 3 shorter episodes once I've gotten home. The episodes at home resolved on their own, 5 to 15 minutes after they started. I'm taking Metoprolol, Amiodarone and Coumadin. I would love some encouragement that this is only temporary and will get better, as the a-fib frightens me because it seems completely out of my control. If you've "been there, done that", I'd love some encouraging words. Thanks so much.
Marie Myers I felt some pretty unsettling arrhythmias early in my recovery. Lucky for me, they stopped on their o ... Read more
Marie Myers I felt some pretty unsettling arrhythmias early in my recovery. Lucky for me, they stopped on their own. Another heart veteran described the feeling “as having a baby octopus squirming in your chest” That is how it felt to me. The episodes of arrhythmias lessened with time, and now at 2 1/2 years, I rarely feel an irregular beat. I remain on metoprolol 12.5 mg twice a day. A fib is one of those things that we cannot control, but can treat. I listened to a lot of “acceptance” videos on Utube during my recovery. Wishing you an a fib-free recovery!
Catie B Been there, done that, Ann. Afib started the day after my surgery and I had some scary recurrences th ... Read more
Catie B Been there, done that, Ann. Afib started the day after my surgery and I had some scary recurrences that took me to ER. But I was taken off Amiodarone and warfarin about three months later, after wearing a Holter monitor for a couple of days. I was told surgery can make the heart "angry" and that it takes time for things to settle down. Most post-op afib does subside. Best to you!
Rose Madura I too had afib and aflutter issues for about 10 weeks after surgery. I'm very symptomatic so they we ... Read more
Rose Madura I too had afib and aflutter issues for about 10 weeks after surgery. I'm very symptomatic so they were horrible for me and I ended up in ER three times and readmitted. The experts say it's quite common for about 6 weks. I was on Amiodarone and Metoprolol in very heavy doses. I still take 12.5 mg of Metoprolol twice daily and have been fine for the past two years. It will get better.
Joy Vera Hi Ann. Like you, I had AFib in ICU. I was on intravenous Amiodarone to address that, then three 20 ... Read more
Joy Vera Hi Ann. Like you, I had AFib in ICU. I was on intravenous Amiodarone to address that, then three 200 mg tablets a day. I went home still taking the 3 tablets a day which was reduced to 2 per day 3 weeks after my surgery. The next week it was reduced to 1 per day & at 8 weeks, it was discontinued. My cardiologist told me to check my pulse frequently to become familiar with my regular pulse so I'd know if it was abnormal & I did that (& still do). I did have a brief episode of an irregular heartbeat while exercising at cardiac rehab but it stabilized after I stopped for a few minutes. I'm a little more than 3 months out from my surgery. As Catie said, it seems to take some time for things to settle down. Best wishes!
Marjorie Murphy Ann
I too had a-fib in hospital and then an episode about three weeks after surgery. i was on amiod ... Read more
Marjorie Murphy Ann
I too had a-fib in hospital and then an episode about three weeks after surgery. i was on amiodorane for about 3 months and I still take 12.5 mg of metoprolo. My cardiologist switched me from warfarin to Eliquis about 4 months ago. Onlt had the one bout with a-fib. My heart rate now is kinda slow and I do notice skopped beats which does not alarm my cardiologist. I have also heard it takes a while for your heart to mend. Your heart went thru some a serious procedure. You will get better.
Barbara Wood Glad you're home Ann! I had afib about a week after I got home. Like Rose, I went back in to have a c ... Read more
Barbara Wood Glad you're home Ann! I had afib about a week after I got home. Like Rose, I went back in to have a cardioversion. I was on amiodorone for about 6 months after. Afib is very common after surgery. Take care:)!
Ann Crone Thank you all for your posts, they help. I just had an overnight in the hospital while they watched ... Read more
Ann Crone Thank you all for your posts, they help. I just had an overnight in the hospital while they watched my heart rhythm and upped my dose of amiodarone. Back home today and hoping these episodes will taper with time. It does feel like an octopus flopping around in your chest! LOL
Catie B Sorry to hear you needed a hospital stay, but I'm glad you received the care and are safe. Afib with ... Read more
Catie B Sorry to hear you needed a hospital stay, but I'm glad you received the care and are safe. Afib with a higher heart rate can feel scary. Hang in there and keep us posted.
Could anyone who has had an aortic valve replacement (with or without aortic aneurysm repair) comment on whether or not their surgeon recommended and performed ...Read more
Could anyone who has had an aortic valve replacement (with or without aortic aneurysm repair) comment on whether or not their surgeon recommended and performed Left Atrial Appendage ablation? I am having a MAZE procedure to help prevent the possibility of Afib post-surgery and the LAA ablation is also recommended. To me, it seems like "overkill" but maybe this is more commonly done than I know. Thanks in advance.
Jeff Baker Hi Ann, I am having a Mitral Valve repair August 6th along with a Cryo Maze procedure. It was recomm ... Read more
Jeff Baker Hi Ann, I am having a Mitral Valve repair August 6th along with a Cryo Maze procedure. It was recommended to me because I have recently had some sporadic Afib symptoms. They can take care of both issues in one session.
Carlos Banuelos Hi Ann, if you have any concerns, I would get a second opinion. You live in Ohio and are lucky to hav ... Read more
Carlos Banuelos Hi Ann, if you have any concerns, I would get a second opinion. You live in Ohio and are lucky to have the best heart hospital in the world just short drive away. I had two phone consults at Cleveland Clinic along with consults with other surgeons in CA before I made my decision, and not all approaches were the same. Good luck with everything !
Erik Jensen Hi Ann. I'm having an aortic root replacement surgery in a couple weeks, during which I too am having ... Read more
Erik Jensen Hi Ann. I'm having an aortic root replacement surgery in a couple weeks, during which I too am having the LAA while they're in there. I don't have a history of recurring AFib, but I did have one episode of it last fall which landed me in the ICU overnight. As a result, when I was at Mayo Clinic for my surgical consultation, I met with one of their heart rhythm specialist and she suggested the procedure to me for preventative reasons. I was so overwhelmed by the new news I was having open heart surgery I immediately said, "no thanks!" My first reaction was I didn't want anything else done to my heart beyond the aortic root replacement and one episode of AFib ranked low in my mind. However, upon returning to Colorado and meeting with my cardiologist here and walking through my surgical plan, she actually recommended I have an LAA without me asking or bringing it up. Being in a more stable state of mind, I reconsidered, started researching it and decided to move forward with it after all. As I understand it, there's really no downside. My take is the left atrial appendage is kind of like an appendix which has no real purpose and there's no harm in doing without it. Conversely, closing it off eliminates a place where clots can form during an AFib episode. That's what changed my mind. My cardiologist brought up one potential side effect which is for some unknown reason sometimes people's thirst response decreases so you just need to be diligent about proactively drinking water. If you have a history of AFib I'd be inclined to do it. If you've never had AFib I'd question the MAZE and the LAA simply to prevent the possibility of AFib down the road. I concur a second opinion is always best. Good luck to you!
Barbara Wood Hi Ann, I had a maze with a laa excision 2 years ago along with a mitral repair. Supposedly stroke pr ... Read more
Barbara Wood Hi Ann, I had a maze with a laa excision 2 years ago along with a mitral repair. Supposedly stroke producing clots form in the appendage, that's why they often excise or tie or staple it off. But those studies, at least 2 years ago, were not conclusive & opinions varied whether it was good or not. It seemed tipped toward removal when I had mine done, but it was my decision. Could your cardiologist & surgeon weigh in? Like Jeff, I had afib before surgery...do you have a history of afib?
tim miller Ann, I am scheduled to have aortic valve replacement at CC on July 30th. I have had issues with Afib ... Read more
tim miller Ann, I am scheduled to have aortic valve replacement at CC on July 30th. I have had issues with Afib in the past so last week when i was at CC for my pre op and to meet my surgeon, Dr. Roselli, he suggested that he do the MAZE and remove the appendage at the same time while he is in there. It makes sense for me due to the bouts of Afib i have had in the past that i had to be cardioverted out of. Also someone pointed out that you live close to Cleveland and i truly believe they are the best at this and the most knowledgeable due to the number of cases they do yearly. I would strongly encourage you to seek them out if you have time. I sure am glad we did. take care
John Hannon I had mine replaced and they were going to do a maze procedure at the same time but on the morning of ... Read more
John Hannon I had mine replaced and they were going to do a maze procedure at the same time but on the morning of the surgery they decided since my heart rate was slow, and I guess the maze might slow it more and might prompt them to want to put in a pacemaker, they decided it wouldn't be wise. Therefore they said my chance of having atrial fibrillation after the surgery would be about 30%. Luckily I haven't had it though, maybe a few flutters for like five seconds each. They didn't mention left atrial appendage ablation. I did have Afib a few months before my surgery - it didn't go away with whatever medication they gave me so we did an ablation and that took care of it. That helped prompt the decision it was time to get the valves fixed.
Ann Crone Thank you all for the responses. The Cleveland Clinic is not an option for me as they do not accept ... Read more
Ann Crone Thank you all for the responses. The Cleveland Clinic is not an option for me as they do not accept my insurance. I applied and was rejected because I have Affordable Care Act insurance and they accept NO Ohio Affordable Care Act plans. Very frustrating because I am in Ohio. From what I have read, the LAA is not truly a heart appendix. It does have some neurohormonal functions and there are journal articles as recent as 2018 stating that more research needs to be done before it can truly be determined if it is a "must" or a "myth" as including it as a procedure with most open heart surgeries. With a history of afib, it makes total sense. To my knowledge I have had PSVT only - supraventricular tachycardia - regular fast rhythm, not irregular atrial fibrillation and have never been on blood thinners. I had episodes over 20 years ago during a high stress job and 3 episodes recently when I found out I needed heart surgery - uh - think "stress" related again. Erik - the thirst response mentioned by your doctor is interesting - and not surprising as it is directly related to a hormone that is released with the LAA stretches as it would upon exertion. I'm surprised the doctor actually mentioned that as it's a remote side effect I think. At any rate, I'm very frustrated and it's the 11th hour for me to get a second opinion. I continue to find this whole process frustrating. I have asked my doctor again to explain to me again why it is necessary and what are the possible adverse side effects.
Barbara Wood Hi Ann, it is strange that you're being steered toward a maze procedure if you've never had afib. You ... Read more
Barbara Wood Hi Ann, it is strange that you're being steered toward a maze procedure if you've never had afib. You would have been prescribed a blood thinner if you had, or worn a holter monitor if they suspected it. Afib in the first weeks after valve surgery is very common & I can't see how a maze would prevent that as they take about 6 months to heal & be effective. And if you are having a maze you want to find a surgeon qualified to do that as well as qualified to do your valve surgery, not all are trained in both. So yes, you need to get clarification from your docs as to why they want this. Oh, and the maze can be done leaving the appendage as is, or removing it - opinions vary.
My best Ann, keep us posted please!
Frank DeGrazia Hi Ann, I just had my bicuspid Aortic Valve replaced. They did not mention your procedure. However I ... Read more
Frank DeGrazia Hi Ann, I just had my bicuspid Aortic Valve replaced. They did not mention your procedure. However I did have 24 hours of AFib as a result of the procedure. I did research in the hospital and found that 50-60% of patients experience AFib after Open Heart . It reversed back to Normal Sinus Rhythm after 24 hours. That was 2 1/2 weeks ago, but they still have me on Beta Blockers and Eliquis as a precaution.
Ann Crone Barbara, you make a very good point about the fact that the maze procedure will do nothing much immed ... Read more
Ann Crone Barbara, you make a very good point about the fact that the maze procedure will do nothing much immediately after surgery as there is a blanking or healing period before it takes effect. So that would seem to me to indicate that he's doing maze "in the event that I were to develop" afib at some point in the long term, like post healing. I've called the surgeon's office again and told them I must speak to him again because I need to understand why he is recommending these procedures. I'm a little disappointed that it has never been a "discussion" but more of a "this is how I do my surgeries". Again, if I had wrestled with afib now or in the past, some of this would make more sense. Anyway, thanks again all.
Barbara Wood Wow Ann, that just makes no sense! Could he be mixing you up with another patient? Good luck in getti ... Read more
Barbara Wood Wow Ann, that just makes no sense! Could he be mixing you up with another patient? Good luck in getting to the bottom of this...let us know what you decide!
Did you ever feel before surgery like you really just couldn't go through with it or couldn't handle it? I just have to put that out there. This discussion ...Read more
Did you ever feel before surgery like you really just couldn't go through with it or couldn't handle it? I just have to put that out there. This discussion board is filled with so much "you got this" and "it will all go well" and "be informed" etc. and I try to take some of that in, but when I look at diagrams of how many pieces of equipment one is hooked up to after the surgery and what the actual surgery entails, I find it t.e.r.r.i.f.y.i.n.g. to the point where I just want to... I don't know... there's no where to run. I have a master's degree in the sciences and had anatomy, biochemistry, physiology in undergraduate, so I mentally understand but am in panic at times while I wait to meet with the surgeon. All my life as I moved around quite a bit, various cardiologists always told me, you want to have this done at the Cleveland Clinic if you ever need to have it done. Now that the time has come, despite picking out a surgeon there, Cleveland Clinic is not in my health insurance plan (though we thought it was when we bought the insurance - enough misleading information on the insurance website for a legal case but that's another story...) So I am trying to use my local hospital that is "in plan". A couple of weeks ago knowing my mental state could be better, I asked my PCP (primary care physician) for an antidepressant in an effort to try and be proactive in advance of this surgery. However, once I had an RX for Celaxa in hand I've never taken it because I researched the effects of this drug on the electrochemical effects of the heart. I already suffer from infrequent supraventricular tachycardia, so I don't think it's a great idea to be downing Celexa at this time and possibly alter the electrochemisty of my heart. I asked my PCP for a support group for this type of surgery, she didn't know of any, but recommended that I ask my surgeon. So, there is just very little "handholding" help in this medical system and I am trying to watch out for myself as best I can because I just don't feel like there is anyone I've met so far (PCP or cardiologist) that has "got my back". If the surgeon I meet with in a week from now doesn't give me some degree of confidence, I really will be at the end of my rope. I don't know how medical access if for all of you but even to get an appointment with my PCP or cardiologist takes weeks.
Steve Farthing There is a support group called Mended Hearts at https://mendedhearts.org One of their members visite ... Read more
Steve Farthing There is a support group called Mended Hearts at https://mendedhearts.org One of their members visited my hospital room after mitral valve repair and it seemed to me a better idea to connect prior to surgery to try and reduce the pre-op anxiety.
Rita Savelis I hear you Anne. All the "you got this" and "it will go well" didn't work for me, either. I needed t ... Read more
Rita Savelis I hear you Anne. All the "you got this" and "it will go well" didn't work for me, either. I needed to hear "I'm sorry you have to go through this. This is hard." I was never sure I could handle OHS, but then life went on and I moved forward despite things. Everyone is anxious, stressed, nervous before OHS, and each person has different individual needs. I wanted acknowledgment of how hard it was, rather than someone saying it would all be fine. Many people take some kind of meds in the weeks/months before surgery in order to reduce anxiety, which can skyrocket. I needed to talk it out with a therapist. I personally was less anxious about surgery itself (which goes relatively quickly). I decided to trust my doctors. I was more anxious about the aftermaths and the recovery period, which takes longer than surgery. I was exhausted for weeks/months. Many use this site as a pre-surgery and post-surgery support group but as I wrote earlier, everyone needs a different kind of support. There is very little handholding in the medical system, it's true. I am hoping that your surgeon will give you confidence. Surgeons tend to be alpha male positive guys because of the powerful work they do, so they can be comforting. You don't really need the best doctor or the Cleveland clinic, just a good doctor. Take care.
Bill L. Hello Ann. Your post resonates with me. Perhaps what I share will resonate with you: I have gained in ... Read more
Bill L. Hello Ann. Your post resonates with me. Perhaps what I share will resonate with you: I have gained invaluable information on this site from the ebooks and webinars (I highly recommend them) that feature the top valve surgeons, including David Adams at Mt. Sinai, Marc Gullinov at Cleveland Clinic, Patrick McCarthy at Northwestern, and Luis Castro at Sequoia Hospital. They pretty much offer the same advice: that is is important to find a surgeon who performs a high-volume of heart valve surgery. For instance, in the area of mitral valve repair, it could mean a difference between having the valve repaired versus replacement; or having the incision via mini-thoracotomy (through the ribs) versus sternotomy (sternum). But hey, if you're limited to surgeons within your plan and time is of the essence, just make sure the surgeon has a successful track record and you're comfortable with him or her. This site also lists many surgeons under "Surgeon Finder" and it includes reviews on them. Perhaps it will include your surgeon. What helps me is "acceptance," especially the things I cannot control. If you list the date of your surgery, I (and I'm sure many others here) will send positive energy your way on that special day.
Shannon Gray Annan, I am 3 years out from surgery and truly appreciate your post. It really resonated with me and ... Read more
Shannon Gray Annan, I am 3 years out from surgery and truly appreciate your post. It really resonated with me and I admire your strength and courage in putting it out there. Even my nurses were Pollyanna-ish and it drove me mad. I just wanted someone to call it like it is... and tell me it’s okay to feel this way. Thank you!
Civita Fahey this is a great post. I feel like I've been there also. the psychological part of this surgery has fo ... Read more
Civita Fahey this is a great post. I feel like I've been there also. the psychological part of this surgery has for me been the most difficult part. Yes, now that's its behind me it's easy for me to say "you got this". But before I always felt like saying "thanks but, you're done, so what if I'm that 1%!" its really hard to sit and wait for surgery as our minds and imaginations are very creative and we can come up with the worst things. I tried to think as positively as I could and at times really broke down and just cried. its ok to do that . As Rita said there is very little hand holding in the medical field, I know work in it. Surgeons are there to say , yup I can do this and physically you will be fine, PCP's just take care of you after and say physically you are fine.. its the emotional part that is hard to deal with. Its been 2 years and I still feel the anxiety on a daily basis. Having a masters in the sciences and having a certain amount of knowledge also doesn't help. You know enough to scare yourself and but don't know enough not to scare yourself. As far where to have it done, you need to trust the doctor and feel comfortable with him. There are many good surgeons in small hospitals, I work with some of them and they aren't in the Cleveland Clinic or other big names. The important thing is to have trust in them. We are all here for you to vent . I know I'm still on here because without these people I wouldn't have been able to get through it. God Bless.
Frank DeGrazia Good morning Ann
I truly identify with your thoughts. Much the same as you , my schooling was des ... Read more
Frank DeGrazia Good morning Ann
I truly identify with your thoughts. Much the same as you , my schooling was destined for medicine . Not sure that I would get a 'seat' in med school my first year of applying I took a position in Europe. I know what is about to happen (surgery in 4 days ; aortic valve replacement; replacement of ascending aorta; i.e. full sternum incision). Even with the medical understanding; a lot to 'wrap my head around'. Having Known that I had this condition and that the Aortic Stenosis had reached the severe stage 6 months ago , I scheduled to have the procedure now. Because being 90% asymptomatic , I wanted to be 64 at least. (My birthday is June 7th; the day you signed on to this website). For you ,or myself, trying to imagine what the experience is like , is analogous to a man stating he knows what its like to go through childbirth. There'd be alot less babies born for sure!
For what it's worth , and what has sustained me these last 2 weeks:
1. FOCUS ON WHAT YOU CAN CONTROL
Do your homework . Make your checklists . Talk to at least 2 surgeons. Don't rely on one person's opinion no matter how qualified they are. Search out hospitals listed on this website, see if theyre in network and call them. Personally proactive steps helps relieve Anxiety. i consulted the Mayo Clinic for understanding and insight.
2. RELEASE 'WHAT IFS'
What if this happens? What if that happens? We can think out the scenarios so often that they start to appear as reality, when if fact they may never occur at all. Personally I have learned "Do not listen to yourself if you happen to wake up at 3:00AM! Very irrational thoughts go on then . I have convinced myself to "Shut Up" and pick it up in the morning. Many times I wake up at my normal 6:15AM and shake my head saying "What made me think I was dying of cancer last night"
I have chosen to treat my case as 'someones' case study . I have always had an affinity for medicine and am fascinated by the greatest machine ever invented, the Human Body, and it's ability to be resilient and recover.
You will ultimately select a hospital and a Surgeon that has completed procedures just like yours countless times. Trust your judgement, then rely on the professionals that you have selected.
Once again, I haven't gone through it yet , but I CAN say I know exactly what's going through you mind . All the best to you Ann! . And i will be anticipating future posts from you to see your decisions and progress
Joy Vera Ann, I was also told I should have my surgery done at the Cleveland Clinic when the time came. Anoth ... Read more
Joy Vera Ann, I was also told I should have my surgery done at the Cleveland Clinic when the time came. Another recommendation was either Dallas or Houston. My husband & I thought it over & talked with my current cardiologist & decided to stay with a surgeon in our area (Austin). It was a more complex surgery than my first one in 2010 & he did a wonderful job. As Frank said, trust your judgement. I wish you the very best.
Barbara Wood I've been there too & completely understand your mindstate! I also asked for an anti anxiety med & th ... Read more
Barbara Wood I've been there too & completely understand your mindstate! I also asked for an anti anxiety med & then never took it after reading the possible side effects, & I too had my heart set on the Cleveland clinic but had to stay local because of my plan . It all did work out... find a surgeon who inspires confidence & take someone with you for the appointment.
I've been on this forum for 3 years & it really fluctuates - at times very rah, rah, you've got this & other times very nitty gritty & practical. It's a fantastic resource, stick with it, read as many journals as you can & the comfort level will come with time. Best wishes Ann- it's not an easy thing!
Catie B Hearing you on on the terror and anxiety, Ann. It helped when a cardiac nurse told me she's never met ... Read more
Catie B Hearing you on on the terror and anxiety, Ann. It helped when a cardiac nurse told me she's never met anyone facing heart surgery who isn't terrified. I'm very high anxiety and cannot take medication. I second the recommendation for reaching out to someone at Mended Hearts. I went through my travels and surgery out of state alone. My surgeon at CC threw me a massive curve ball the night before my surgery. I was sooo grateful to have already connected by phone with a Mended Heart volunteer. I reached him after the mind-bending consult and he tried to help peel me off the ceiling. A few days after my op, he visited me and was such a blessing. He had my same surgeon for his prior surgery. Once I was home, I still had complications and I had a very warm-hearted GP and his PA, plus cardiac rehab staff. Their support was very meaningful. Keep letting your feelings out as best you can, get a therapist, if needed. It's more than okay to talk about the emotional repercussions of surgery. It's a life-altering ordeal, for sure.
Ann Crone Wow, thank you everybody for responding to my post and really taking the time to give me some thought ... Read more
Ann Crone Wow, thank you everybody for responding to my post and really taking the time to give me some thought out advice and encouragement. I wanted to respond to each of you individually but it seems like when I do that all comments get posted which would really run this topic into the ground on this board. So, I'll make do with this single post. I feel a lot better that nobody just scoffed me off the chat log or just told me to suck it up, although there's still time for that, ha. I know there are others out there dealing with just as much and lots more. That so many of you said you understand my state of mind gives me confidence I'm not losing it! I liked so much of the advice and will be trying some of it. If any of you, like me, have ever been described by a friend as "extremely self-sufficient" then you know that trusting others with important stuff is not an appetizing proposition. I woke up this morning thinking that what I may actually be doing at this moment is grieving the loss of my life as it has been up to this point - basically a life of reasonably good health and mercifully free of interactions with the health care system. Intellectually I know there is life after OHS but this board leads me to believe it's never quite the same life. Maybe I'm reading more into the posts than is actually there, I don't know. Maybe this board is slightly more weighted with those that have had a tougher go of things, with more post surgery complications, I don't know. Anyway, thank you all again.
William Hirshman I have just had a redo operation 25 years after my initial OP. I won’t go into the details, but I h ... Read more
William Hirshman I have just had a redo operation 25 years after my initial OP. I won’t go into the details, but I had a very rough time in the ICU. I went crazy but had the frame of mind to get someone to help me mentally. As I live in Germany, almost every hospital has what is known as a “Seelsorge,” which essential means care for the soul, generally staffed by one or two pastors and/or priests. After a very big mistake on the ICU doctors’ part, leading to me seeing myself bicycling along a river, I was as crazy as I have ever been, something the medical staff in the ICU for the most part didn’t understand or didn’t know how to deal with. Fortunately, I had the wherewithal to demand to see someone from the Seelsorge, even though I am not at all religious. A pastor named Peter came to not so much talk to me, but to listen to me pour out my emotional pain. It helped me immensely. Peter was the best “doctor” I had during my seven days in the ICU. In my opinion, no matter how technically proficient the hospital where the surgery takes place is, each should have a department that is there to deal with patients who are going through what is or will be perhaps the most difficult time of their lives. So even if, like me, you are not a “believer,” my advice is to seek out a pastor or priest (or someone in the religious community) who has some experience helping people repair their battered “souls.” You need to talk to someone who has the time to really hear your cries.
Mava Reif My heart goes out to you, remembering how paralyzing the anxiety & fear can take over our lives befor ... Read more
Mava Reif My heart goes out to you, remembering how paralyzing the anxiety & fear can take over our lives before surgery. It is such a lonely place that no one in our normal life "gets". By those on this site do, so keep on reaching out when you're feeling bad... You will get some great advice from people who have been there! This kind of operation seems to affect the very core of our emotional stability for some of us who are used to being strong. I will repeat what others have said to be kind to yourself and don't let someone else's courage or strength or victory make you feel bad about yourself. This is a scary life event, but step by step you will get there. I had to search around for a more supportive surgeon & hospital, and this website helped me greatly. God bless you & send you peace. ❤️
Ann Crone William, my heart goes out to you, no awful pun intended there. Someone else here mentioned a therap ... Read more
Ann Crone William, my heart goes out to you, no awful pun intended there. Someone else here mentioned a therapist and I am considering that as well. Like you, I'm not a very religious person.
Petey Bello Well said Rita (& so many more responses) . Ann, I think a lot of us feel & felt the same way you do. ... Read more
Petey Bello Well said Rita (& so many more responses) . Ann, I think a lot of us feel & felt the same way you do. Adams site was a huge support for me even though I had my husband and family. They couldn't give me the same support I felt from others who had gone through or were dealing with OHS. The fear and anxiety are normal feelings that we deal with even with the best support. Continue to reach out on this site, it does help. One of the first things I did as soon as I was able to use my phone after surgery was reach out to everyone on this site with questions, fears, etc, they were my lifeline before and after surgery! I wish you the best!
Mike Roskowinski Ann I get what you are feeling. I was scared the entire time waiting for the surgery. Thought about m ... Read more
Mike Roskowinski Ann I get what you are feeling. I was scared the entire time waiting for the surgery. Thought about making videos for each of my kids to remember me. Going through all the insurance and everything that my wife would need if I did not make it. The rah rah and positivity on this site helped me more than anything. Knowing how many people have been through this and survived. I prayed every night and even cried thinking about everything. I had some issues after surgery and spent two weeks in the hospital. Sometimes I felt why did I do this. Am I ever going to get out. I went to surgery that morning smiling and cracking jokes hoping to let the positivity pass to the care team.
Rose Madura Great posts from everyone! OHS is such a major surgery and everyone reacts differently to the news. ... Read more
Rose Madura Great posts from everyone! OHS is such a major surgery and everyone reacts differently to the news. We need to be our own advocates! In our physical and mental well being. I "fired" the cardiologist that was assigned to me when my cardiologist retired. He had a horrible bedside manner. I ended up with the greatest cardiologist (in my opinion). I had a lot of complications with my surgery and he was so compassionate. One day, after a terrifying experience, I simply said to him when he came to see me, "I'm scared." He said to me, "I don't blame you for being scared." I was thankful he didn't blow me off. He told me later that I looked so bad, he knew he had to figure out what was wrong and he did! All is well now. I hope I'm not rambling but wanted to share the importance of not only trusting the surgeon but also the cardiologist. BTW, my surgeon was also very awesome! He was from our local hospital and had done many successful surgeries and was highly recommended. There are many fine surgeons out there.... I'm sorry you have to have surgery. Let us know if you have any other particular comments or questions . We are here to try to help.
Rita Savelis Oh gosh Ann, you are so spot on with everything! I agree with your thoughts about grieving the former ... Read more
Rita Savelis Oh gosh Ann, you are so spot on with everything! I agree with your thoughts about grieving the former you and a life pre-surgery. There is so much to process. You sound incredibly self-aware. Being aware and sensitive, can make going through this harder as you feel with such intensity. Writing it all out, acknowledging it, is important. Keep writing. I second everything you say and feel. Take care.
Marie Myers Grieving the loss of my former, carefree, no medical problems lifestyle was exactly what I felt. The ... Read more
Marie Myers Grieving the loss of my former, carefree, no medical problems lifestyle was exactly what I felt. The whole open heart thing is a real learning/growing experience.
Ann Crone Thank you all for comments on my post, so thoughtful of all of you.
How did you find your surgeon? I can't seem to find one. The ones listed on this website in my area are not in my insurance plan. There are no hospitals ...Read more
How did you find your surgeon? I can't seem to find one. The ones listed on this website in my area are not in my insurance plan. There are no hospitals that specialize in heart valve surgery in my state other than Cleveland Clinic - also NOT in network in my health insurance. My cardiologist says he knows some surgeons that may do this type of surgery but I'm still waiting for him to suggest specific names.
Catie B This might help. Heart-surgery Hospital rankings Ohio. https://health.usnews.com/best-hospitals/area/ ... Read more
Catie B This might help. Heart-surgery Hospital rankings Ohio. https://health.usnews.com/best-hospitals/area/oh
I tend to research all things pretty hard. I pored over various sugeons' credentials and reviews when I thought I might have my surgery locally. The one at the top of my list was confirmed by both my GP and cardiologist to be excellent.
Susan Lynn I agree with Catie. Research is key. Find surgeons who have successfully performed your procedures ... Read more
Susan Lynn I agree with Catie. Research is key. Find surgeons who have successfully performed your procedures in high volume. Your comfort level going into surgery will be directly correlated to the confidence you have in your surgeon, team, and facility. Your surgeon may even provide references to speak with - I now do that for prospective patients for my doc. Take your time and make the decision that's right for you. All the best! ❤
Michael Greco Did you think of doing this in the other direction, starting with the surgeons on your insurance and ... Read more
Michael Greco Did you think of doing this in the other direction, starting with the surgeons on your insurance and checking credentials from that list? I know that having major surgery close to home can make the process easier, but when it comes to your heart health, the best surgeons, who have the best outcomes, would be worth the inconvenience of travel, if you can manage it. Don’t know how much time you have to plan your treatment, but finding the right surgeon takes a huge load of doubt and fear off the enormity of facing cardiac surgery. At least it did for us.
Bradley Dunn I read about NBA player Jeff Green... from there it was easy.. I want that guy's surgeon. If the Bost ... Read more
Bradley Dunn I read about NBA player Jeff Green... from there it was easy.. I want that guy's surgeon. If the Boston Celtics doctors approve... I approve too.. so yeah.. I got that guy.. And yes he is still in the NBA.
Steve Farthing One more thought beside these great suggestions so far - If it is medically safe to wait until the ne ... Read more
Steve Farthing One more thought beside these great suggestions so far - If it is medically safe to wait until the next open enrollment for your insurance, you could also look at any other insurance plans that might be available to you.
Rose Madura Hi Ann. I noticed you are from the Cincinnati area. I'm surprised there aren't fabulous hospitals th ... Read more
Rose Madura Hi Ann. I noticed you are from the Cincinnati area. I'm surprised there aren't fabulous hospitals there. Keep researching. I had mine done at the Schuster Heart Hospital at Kettering Medical Center. They we are excellent. I'd recommend my surgeon Dr Peter Pavlina. If you don't want to drive to Kettering, keep looking. I'm sure you'll find one. BTW I had same surgery as you are needing....
Ann Crone Thanks for all the helpful comments. I am following the somewhat backwards approach of seeing which ... Read more
Ann Crone Thanks for all the helpful comments. I am following the somewhat backwards approach of seeing which hospitals my plan covers and then surgeons from there. Cleveland Clinic is EXCLUDED from all Ohio Marketplace insurance programs, so enrolling in a different marketplace insurance program won't change that. Thanks for the recommendation for Dr. Pavlina, that is one physician I had come across.
Rose Madura Dr Pavlina is the best! I'd put him up against anyone. I received excellent care from the Ketterin ... Read more
Rose Madura Dr Pavlina is the best! I'd put him up against anyone. I received excellent care from the Kettering Health Network. Your approach is a good one. Let us know what you decide.
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Being an engaged patient is not always easy, but research shows that proactive, informed patients fare better. Once you've thought about the quality and safety of your hospital, it's time to think about picking the best physician or surgeon, comparing costs of specific procedures, and deciding what kinds of tests and treatments are right for you.
Ann Crone Kaaren Carone, thank you for these links. I'm just now getting a minute to look at them and I think ... Read more
Ann Crone Kaaren Carone, thank you for these links. I'm just now getting a minute to look at them and I think they are going to be helpful.
So last week my cardiologist's office called to let me know that all my test results had been faxed to my prospective surgeon at the Cleveland Clinic. Called ...Read more
So last week my cardiologist's office called to let me know that all my test results had been faxed to my prospective surgeon at the Cleveland Clinic. Called Cleveland Clinic on Tuesday of this was but was told it was too soon for anything to have happened. Contacted Cleveland Clinic again today only to find that they had received nothing and only as of today are now working with my cardiologist's office to get my records. So now I'm looking at another 7 to 10 days wait before I even hear a prospective treatment plan. Are these kind of problems common? Since I really don't know how this is all supposed to work, it makes it difficult for me to "micro manage" what is supposed to happen. I just hope I don't have to order my own Inspira valve off of Amazon!
Mike Roskowinski Ann that sucks. I did not have that problem as I transferred all my stuff to the Mayo from my origina ... Read more
Mike Roskowinski Ann that sucks. I did not have that problem as I transferred all my stuff to the Mayo from my original clinic. I was able to use the online tools to transfer and see that it got sent over. I also bugged both hospitals often to make sure that it all got sent over.
Rose Madura I think I remember someone being frustrated with the transfer of information. I think it just takes ... Read more
Rose Madura I think I remember someone being frustrated with the transfer of information. I think it just takes time. I'm sorry you are having stress about it. I'm sure it will work out.
Catie B Ann, I hope things smooth out for you. My surgery, hospitalization and medical follow up for post-op ... Read more
Catie B Ann, I hope things smooth out for you. My surgery, hospitalization and medical follow up for post-op complications at Cleveland Clinic was excellent. But I would be less than honest to say things went smoothly in a number of other aspects. My situation did have some complexity to it, but their process took a long time and numerous things went off the rails that I had to battle to get corrected. It was very stressful. But CC was the right decision for me, in spite of obstacles. The point person who was the most helpful in the journey was the surgeon's practice-manager nurse. Best to you!
Judy S You have a good sense of humor Ann so that will help you through!