Hi all my heart brothers and sisters, i had my mitral valve repair in 2016 with Dr. Gillinov at CC. Following the surgery which was robotic I suffered ...Read more
Hi all my heart brothers and sisters, i had my mitral valve repair in 2016 with Dr. Gillinov at CC. Following the surgery which was robotic I suffered terribly for the first two years with periodic pericarditis. My heart doc at home finally figured out a combo of medicines that calmed it down, and as long as I stayed on them and didn’t exert myself to much physically during that time it went away after 3 weeks to a month. Fast forward to Covid vaccine which I got at my cardio docs advice and boom there was the pericarditis again. I started the meds immediately and after a couple of weeks it subsided and then after the 2 nd it came right back. Same deal, did the meds and stayed quiet, my doc said no more vaccines for me because since the initial introduction of the vaccine it’s been discovered to trigger pericarditis. Ugh! I am having another incident now, not sure what triggered it, but it stinks! I am grateful that I have not had this problem for a long time, but I would love to speak with someone on this site who does.
Richard Munson I haven’t heard dr. Fauci caution us about pericarditis. Must have slipped his mind. Darn.
Hi everybody! It’s been since 2016 that I had my mitral valve repair done by Dr. Gillinov at CC in Ohio. I had robotic surgery and suffered terribly in recovery ...Read more
Hi everybody! It’s been since 2016 that I had my mitral valve repair done by Dr. Gillinov at CC in Ohio. I had robotic surgery and suffered terribly in recovery unfortunately. It turned into ongoing intermittent flares of pericarditis. I’m still getting them and they are miserable when I get them. I have treated the episodes while present with colchicine and anti inflammatories, I have to stay on the colchicine for 3 months. So, I went as long as 19 months recently without a reoccurrence and I was happy as a clam, I got my vaccine in February and as soon as I had it, Moderma, it triggered an episode, I immediately went on the meds and it lasted a couple of weeks, then the second shot did the same thing. My cardiologist said “that’s what it’s supposed to do, challenge your immune system.” Well here I sit a few months later and I have it again!!! I was doing.very well before the shot, finally, and now I am back to reciting episodes. I read last night from an article written by Cleveland Clinic itself that three of the things that can contribute to pericarditis are breast cancer with radiation treatment over the left breast, Cardio Catherization and heart surgery! I’ve had all three! Please if anyone here struggles with pericarditis send me a message and maybe we can compare notes! Lise
Susan Lynn Lise- I am so sorry to read that you're still having episodes of pericarditis. Hopefully, you will ... Read more
Susan Lynn Lise- I am so sorry to read that you're still having episodes of pericarditis. Hopefully, you will improve once you put some distance behind that second shot. Please keep us posted on your progress. ❤
Dylan Kempers Hi Lise. I read this latest update that you posted, and also your previous journal's entries about yo ... Read more
Dylan Kempers Hi Lise. I read this latest update that you posted, and also your previous journal's entries about your pericarditis episodes. I had robotics Mitral Valve repair 4 months ago, and already experienced 2 episodes of pleuritis (and possibly pericarditis). I say possibly because the echo doesn't show it, but the pericarditis symptoms are very similar to those of a pleuritis (which an X-ray showed). The first episode happened 2 months after my surgery, and the second episode happened almost 4 months after my surgery. In both cases, I also had an allergic reaction. The first one was an anaphylaxis, very strong. They gave me prednisone (steroids) and it went away immediately. For a while, we didn't know what was going on. It took several tests. Besides the symptoms, the indication that I had an inflammation was that my C-Reactive Protein level was extremely high. For the second episode they gave me ibuprofen and colchicine, and all the symptoms went away immediately. You can read my latest entry in my journal for more details.
Hello everyone,
I had my mitral valve repair almost 5 years ago at CLeveland Clinic in Ohio. I had robotic and have had problems with pericarditis on and off ...Read more
Hello everyone,
I had my mitral valve repair almost 5 years ago at CLeveland Clinic in Ohio. I had robotic and have had problems with pericarditis on and off ever since. I have been treated by a cardiologist who is part of CC in Florida ever since. I’ve had it 5 times since the surgery and I’ve had to remain on the medication for 3 months at a time. It is extremely painful and uncomfortable during the times I’ve had it and frankly it stinks. I cannot exercise, sleep, or live my life in a normal way when it takes hold. The longest I went without it was 19 months which was terrific! My cardio doc has run out of suggestions and I’m feeling quite discouraged. I would love to know of a doctor who specializes in pericarditis. Has anyone here had a problem with this after their heart surgery? I need we had it before. I am 66 years, within a healthy weight range, eat well, don’t drink or smoke and doing great except for the pericarditis!
Tracy Fallu I am so very sorry you continue to deal with pericarditis.
Hello everybody,
I haven't been on this site in ages and I just got this email so I thought I would check in. I had my valve repair robotically done at CC in ...Read more
Hello everybody,
I haven't been on this site in ages and I just got this email so I thought I would check in. I had my valve repair robotically done at CC in Ohio with Dr. Gillinov 3 years 8 months ago. Sheesh, its amazing its been that long! He is a wonderful Doc and even though he is very busy after I got home to Florida, a long way from Ohio, whenever I texted him he got right back to me within minutes. I did have some problems with pericarditis after so it wasn't a walk on the beach!
That has cleared up a long time ago and I have been happy as a clam since. Very grateful for this site as I was going through the initial shock and fear of finding out I needed heart surgery! I was quite shocked having never having had a problem with my heart, but there it was, and this site gave me tons of information and support! Thank you Adam!
I am recently experiencing something that is making me a bit concerned, with taking a new medication Ive noticed my heart beat has risen. Normal resting heart beat for me is 65 to 75 depending on how much coffee Ive consumed. Not a lot, just 2 cups a day, lol. Ive spoken to the pharmacist today and he said that can be a side effect of this medication. Now I definitely want to ask my cardiologist about this, but, as we all know, going into a doctors office right now is scary. Its not bouncing out of my chest by any means but it just gets a rather fast heavy beat when Im doing something simple like carrying the laundry basket from one room to another. we've been riding bikes to get out of the house and it went up to 120 bpm on the bike ride. Its just pounding harder it seems and I can hear it in my ears. My ears have been rather blocked from allergies so they are a bit echoing. The medication is Celexa generic and Ive taken it for years, but the pharmacy recently changed the generic brand. If any one else has had this experience with ANY medication please inform. BTW, I don't drink alcohol, smoke or take drugs. I eat very well and don't eat red meat. I am going to go to my cardiologist as soon as this insane world we are living in gets a bit more normal.
Thank you in advance for reading,
Lise
Carlos Banuelos Hi, I don’t have any experience with the medication, but I do recommend reaching out to your cardio ... Read more
Carlos Banuelos Hi, I don’t have any experience with the medication, but I do recommend reaching out to your cardiologist. Most doctors right now are doing virtual visits. I don’t blame you for not wanting to go into the office or a hospital. Good luck.
Hi Lisa, I also don’t have any experience with this drug. Maybe Adam can tell you something about i ... Read more
Hi Lisa, I also don’t have any experience with this drug. Maybe Adam can tell you something about it or have one of the experts he talks to tell us about it. Can I ask why you are taking it? I totally get that things they way they are not conducive to make a trip to a doctor’s office. Hope you get some answers. Be well
Oh no! I got a slight head cold about 14 days ago and for some reason it feels like it triggered pericarditis again! Ugh, it’s been a good 6 months since ...Read more
Oh no! I got a slight head cold about 14 days ago and for some reason it feels like it triggered pericarditis again! Ugh, it’s been a good 6 months since I last experienced this pain while breathing. The cold was in my head, and I didn’t have any chest congestion/problems at all, until about a week ago and then that old familiar tight feeling in my chest came back and my breathing felt painful. My cardio doc couldn’t fit me in but told me to go straight to the ER. I did, my heart was good as far as the ekg, blood pressure, oxygen etc. The ER doc suggested it was pleurisy or pericarditis and sent me home with anti inflammatory malaxicam. I am resting a few days, taking Tylenol and waiting for the malaxicam to kick in. I am going to try and get in with my cardio doc this week. We live in a very seasonal town and the docs are overwhelmed at this time of year. The pericarditis I had for a good while after my MVR has been completely gone for at least 6 months, I am interested, what triggered this so I can avoid it? Why would a slight cold trigger the lining in my heart sac to flare up? It doesn’t make sense to me, experience please?
Barbara Wood I'm so sorry that you've been hit with pericarditis again Lise, it must be frustrating to have it ret ... Read more
Barbara Wood I'm so sorry that you've been hit with pericarditis again Lise, it must be frustrating to have it return once you feel you have it licked. I had a pleural effusion right after surgery but that was resolved & I've had no problem since- luckily. Pericarditis is a common manifestation of radiation induced heart disease - I wonder if it might be wise to seek out an oncology- cardiologist. I've read that has become a growing speciality now. A few of the hospitals in Boston ( where I had originally hoped to have my surgery) have oncology-cardiology centers that specialize in treating RIHD- might there be one in FL? I'm thinking I've seen mention here of a mayo clinic in Miami?
I hope you feel better soon....Sending positive thoughts & good wishes your way...take care Lise:)
Lise Bowles Barbara, I am not sure this is caused by radiation, I was fine for 14 years after I had breast cancer ... Read more
Lise Bowles Barbara, I am not sure this is caused by radiation, I was fine for 14 years after I had breast cancer. The culprit is more than likely the robotic surgery to repair my mitral valve. From the research I have done I would surmise that injury to the pericardium is what very often causes pericarditis. With the robotic surgery, there were 6 incisions on my right side, and they tunneled across to my heart! Ugh! Thank you for the suggestion, but I am afraid the damage is done. ❤️
Barbara Wood Oh that's a bitch! When I first came to this group I was all gung ho on having robotic - faster recov ... Read more
Barbara Wood Oh that's a bitch! When I first came to this group I was all gung ho on having robotic - faster recovery etc- but it seems that I've read more than a couple negative experiences from people who've had it. Now I'm glad I had the old school full sternotomy...I do hope you get some relief soon - you've had to put up with quite enough! Take care...
Tracy Simmons Hi Lise. So sorry to hear about your pericarditis returning - it's definitely a scary and painful ex ... Read more
Tracy Simmons Hi Lise. So sorry to hear about your pericarditis returning - it's definitely a scary and painful experience. I had pericarditis shortly after my surgery which was in March 2016. I went to the local ER in the wee hours of the morning with shortness of breath, pain between the shoulder blades and unable to take a deep breath. I think it took a day for them to diagnose - they originally thought I had pneumonia. I traveled out of town for my surgery, so the ER that I went to wasn't the same hospital where I had my surgery. The hospital put my on an aspirin regime of 325 mg 3 times a day for two weeks - that's a lot of aspirin when I was already taking a blood thinner (Warfarin) to prevent clots while the valve healed. When I called my out of town cardiologist about the diagnosis, he advised to continue with the aspirin regime, but said if it didn't improve or if it recurred to call him. I think by the 2nd to 4th day I was feeling better from the pericarditis. I hope this helps and I wish you the very best.
Pericarditis can cause swelling in your feet, legs and ankles. This swelling may be a symptom of constrictive pericarditis. This is a serious type of pericarditis where the pericardium gets hard and/or thick. When this happens, the heart muscle can’t expand, and it keeps your heart from working like it should. Your heart can become compressed, which causes blood to back up into your lungs, abdomen and legs, and cause swelling. You can also develop an abnormal heart rhythm.
Lise Bowles Michael,
Thank you for the article, I went down to the Palm Beach branch of CC in order to see my ca ... Read more
Lise Bowles Michael,
Thank you for the article, I went down to the Palm Beach branch of CC in order to see my cardiologist. She checked my heart, breathing, ankles and feet, and they all checked out fine. She had me go back on the colchicine and malaxicam for 2 weeks and I am much better. Not sure if it was pericarditis or not, but as long as its gone, I am happy. She wasn't sure either. Thank you for your help.
Omg 1 year ago today!!!! At this time one year ago I was under for 5 hours to have my mitral valve repaired! I've had some difficulties throughout the year ...Read more
Omg 1 year ago today!!!! At this time one year ago I was under for 5 hours to have my mitral valve repaired! I've had some difficulties throughout the year regarding pericarditis and pluerisy, but I lived to tell the tale and am starting to feel my energy returning. I've been on anti inflammatories and colchicine on and off for just about a year now, went off the other day with my docs approval and I am crossing my fingers and toes that it's going to stay away! I feel great! Unfortunately I have to go for another surgery for my breast, suspicious area, ugh! I am trying to stay positive and optimistic but I am a wee bit worn out! Prayers appreciated please. I have been steering clear a good bit from this site because I was struggling and I didn't want to scare people. I hope everyone out here is doing well.......
Laura Jacobs I will be thinking about you and hoping that they find that everything is benign. Please let us know ... Read more
Laura Jacobs I will be thinking about you and hoping that they find that everything is benign. Please let us know how you are doing?
Barbra Allen You're in my prayers hope things go well
Barbara Wood Really wishing you the best in the coming year Lise, & hoping that your struggles are soon behind you ... Read more
Barbara Wood Really wishing you the best in the coming year Lise, & hoping that your struggles are soon behind you! Please do keep us informed...I really think it's helpful to be aware of the tough & scary journeys some of us go through as well as the easy, uneventful & quick recoveries of others. We need to see the whole picture- the good, the bad ,& the ugly, to come to terms with the surgeries & recoveries we face.
Sending many prayers & positive thoughts your way! xo
Craig Wise Welcome back. We all wish you well. And I think every part of our journeys are appreciated here - th ... Read more
Craig Wise Welcome back. We all wish you well. And I think every part of our journeys are appreciated here - the highs and especially the lows. I too had a very severe complication and tons of pain for months. And I didn't want to share it. But I finally did. Lots of people encouraged me. And when I'm feeling better, I'll share that too. Congrats on making it through a tough year!! We're all pulling for you. One Heart.
Jennifer McInerney I hope all is well and your journey to recovery continues. I. Think there is great value in sharing y ... Read more
Jennifer McInerney I hope all is well and your journey to recovery continues. I. Think there is great value in sharing your experience. Hearing about your struggles as well as your success helps all of us who are on this OHS road. Hopefully our encouragement helps you through the rough patches. Take care, keep us posted.
Darlene Smith Awesome Lise!! And thinking of you regarding your upcoming surgery. Hope its nothing serious.
Lise Bowles Well, turns out it was great cancer, but fortunately DCIS, which is self contained and not invasive, ... Read more
Lise Bowles Well, turns out it was great cancer, but fortunately DCIS, which is self contained and not invasive, Thank Goodness, a bit of surgery and hopefully good to go! No rediation and no chemo, yay!!!
Lise Bowles Thank you for all your support everybody!
Laura Jacobs Oh my gosh Lise, that is such great news! I am so happy to hear that you have a full recovery ahead ... Read more
Laura Jacobs Oh my gosh Lise, that is such great news! I am so happy to hear that you have a full recovery ahead of you! Heal well my friend!!!
Phyllis Petersen I must have missed your anniversary! It was good hearing from you and I hope all went well with your ... Read more
Phyllis Petersen I must have missed your anniversary! It was good hearing from you and I hope all went well with your breast.
Hi Everybody,
I recently learned the new doc I am seeing suggests I should be on a statin. My original doc did a tee right before my surgery and he said my ...Read more
Hi Everybody,
I recently learned the new doc I am seeing suggests I should be on a statin. My original doc did a tee right before my surgery and he said my arteries were "pristine". He did say there was a very small partial blockage off to the side that he wouldn't worry about, so I haven't. I had MVR 10 months ago.
Since about 2 months after my surgery I've had pericarditis. The cardio doc didn't seem to be able to treat it efficiently so I went to CC in Fla. (I had my surgery at CC in Ohio.
She said she wants me on a statin and was quite suprised I hadn't been on one.
I ran into a friend of mine the other day who had ohs a couple of years ago and he said they ("ate his muscles)"! I have no idea what that means but he said it was very painful.....can anybody share with me your experiences with statins?
Dan Marcantel We had surgery around the same time , Mitral valve repair I remember you.
I hate the idea of taking t ... Read more
Dan Marcantel We had surgery around the same time , Mitral valve repair I remember you.
I hate the idea of taking them but I started again about 2 months ago. I am on a low does of crestor.
I have struggled for years with High cholesterol I don't know why really other than genetics. I eat very clean and healthy. They were very high my last blood work.
With that said I am in the same boat as you very clean arteries not a blockage to be found before or after surgery.
To answer your question they can but not always cause a condition where your muscle atrophies. I am still a weight lifter and still a pretty muscular guy even at 49. I took Lipator a few year ago and had a lot of joint pain and muscle cramps. This made me not want to work out. I take crestor now and have 0 side affects but I only plan on staying on them just enough to get my levels down and maintain them with diet.
Statin side effects can be uncomfortable but are rarely dangerous.
Barbara Wood I tried pravastatin, a low dose at my pcp urging a few years ago. I had terrible knee pain- I could b ... Read more
Barbara Wood I tried pravastatin, a low dose at my pcp urging a few years ago. I had terrible knee pain- I could barely climb steps, even walking became hard- within about 3 weeks. This was the first time I had ever experienced joint or muscle pain. I came off it very gradually, the withdrawal was truly hellish, it took me 2 weeks to wean off & I was on it only 4 weeks. It's now noted in my chart that I am "allergic" to it. My Pcp always brings it up to try another, I always put her off. My cholesterol is borderline high, but I have clean arteries. My cardiologist seems not concerned at all about my not taking anything since my arteries are clear.
Barbara Wood I wanted to add that I had a book- Cholesterol Down- a few years ago that was a plan with about 10 ea ... Read more
Barbara Wood I wanted to add that I had a book- Cholesterol Down- a few years ago that was a plan with about 10 easy steps to follow- like oatmeal each morning, 1/2 walk/ day, handful of almonds etc. It was very easy to do & significantly lowered my cholesterol after 6 weeks.
Lynda Ruiz CoQ10 is supposed to help with muscle pain from stations. A turmeric supplement is supposed to work a ... Read more
Lynda Ruiz CoQ10 is supposed to help with muscle pain from stations. A turmeric supplement is supposed to work against cholesterol, amongst ther things
Civita Fahey I eat oatmeal every morning and my last cholesterol was 160 which was significantly lower than in the ... Read more
Civita Fahey I eat oatmeal every morning and my last cholesterol was 160 which was significantly lower than in the past. I also eat nuts and Mediterranean diet. but I think the oatmeal had a lot to do with it.
Lise Bowles Great ideas, I didn't know about the oatmeal, I will certainly include that in my morning routine! I ... Read more
Lise Bowles Great ideas, I didn't know about the oatmeal, I will certainly include that in my morning routine! I will also add tumeric and I already eat a very good diet with nuts and veggies and lean meats. The other day I saw a commercial on tv about a supplement called Garlique. It said that it is odor free and is apparently supposed to lower cholesterol. I have never tried that, if any of you have please comment. Barbara, its good to hear from you, I will check out the book you mentioned, and Dan I remember you! I will read the articles. Thank you all!
Lise
Laura Jacobs I have had very high cholesterol all of my life despite a healthy diet. I ignored my doctor's advice ... Read more
Laura Jacobs I have had very high cholesterol all of my life despite a healthy diet. I ignored my doctor's advice to take a statin. I finally started taking lipitor when I was diagnosed with a heart murmur. I had to come off the lipitor because of significant hip pain that prevented me from sleeping and eventually difficulty walking. I was switched to Crestor which resolved the joint pain issues. I have been on Crestor for about three years without any problems. I have an aversion to oatmeal, except in cookies, so that was not an option for me. My husband eats oatmeal to lower his cholesterol and it works for him.
Hi Everybody,
I am 8 and a half months post MVR and still struggling, darn! I have had terrible issues with pericarditis and pleural effusions since my surgery ...Read more
Hi Everybody,
I am 8 and a half months post MVR and still struggling, darn! I have had terrible issues with pericarditis and pleural effusions since my surgery last August. I haven't posted much recently because I was getting really frustrated with all the pain and setbacks I have had with this. I went to my local cardiologist when I came home from CC last August after robotic surgery for MVR. I was under the impression that robotic surgery was the easier softer way. No heart surgery is ever a day at the beach but from what I read and various videos etc. I got the impression that I would feel much better than I did or have! Reading the accounts of people with a full sternotomy it looked to me like I was healing even slower. Then the pleural effusions and pericarditis were initially treated by my cardio doc with an anti inflammatory called Malaxicam. It did very little so he sent me to a pulmonologist for treatment. I never had any problems like this before surgery, and I felt like I was getting stabbed in the heart, but, he seemed to feel that the pulmonoligist could help me. She gave me colchicine starting about 5 months ago. I've been off and on it ever since. I was doing cardio rehab when the first bout happened. The pain was unbearable, after a few days the colchicine go it under control. I have since read that excercise can agravate it.
Nobody has explained why this comes and goes or what the actual problem is except to say that "sometimes this happens after heart surgery."
And, if it happens chronically it's called Dressler's syndrome. It is acute in that when it returns, it is sudden and extremely painful! I have an appointment on Tuesday with the Cleveland Clinic Florida, and I am hoping they can help me understand and resolve this. I am 62 and up until discovering at a routine physical last year that I had a heart murmur, I had no symptoms, and thought I was in pretty good shape. I don't drink or smoke.
If any of you have ever had experience with this problem I would love to hear about it!
Lise
Barbara Wood Lise, I am so sorry to hear you're still having problems. I've followed you because I saw that you, l ... Read more
Barbara Wood Lise, I am so sorry to hear you're still having problems. I've followed you because I saw that you, like me, are a breast cancer ( left side also) survivor. I am 2 weeks away from my surgery- mitral valve, repair hopefully, & pretty concerned about the cancer history affecting the surgery. My surgeon said he expects some issues once he gets inside, mainly scarring, that will have to be addressed, but seems pretty unconcerned overall. He does think the valve issue is from the radiation. Do your docs feel the problems you are having are related to the previous cancer? Do you?
There is a cleveland clinic podcast upcoming- next wed at noon- on radiation & the heart. If you register you can submit questions. You might want to check it out.
I wrote a book here! All my best wishes to you Lise, hope you can get some answers & feel better soon!
Phyllis Petersen I'm sorry to hear that your problems are continuing. I had hoped that they had resolved and you were ... Read more
Phyllis Petersen I'm sorry to hear that your problems are continuing. I had hoped that they had resolved and you were recovering. I hope they can find answers for you. I know that I'd be going nuts in your situation.
Rita Savelis I had 4 pleural effusions after OHS. Doctors didn't know when they would stop... but they finally did ... Read more
Rita Savelis I had 4 pleural effusions after OHS. Doctors didn't know when they would stop... but they finally did. I had 3 drained in hospital, and went back to hospital for the 4th one (8 weeks after OHS). Meds didn't work for me. I already had scarred lungs before OHS (from childhood radiation)... I kept thinking I'd get some answers from the doctors as to why this was happening but no one seemed to know (they analysed the fluid, etc.), although they do see it.
I feel for you, especially if this has turned into a chronic problem. There are so many things that "sometimes happen after OHS"... it's unfair. You've been through too much. Take care, Lise.
Enrique K Lise, I hope things get better soon and pass the stage of discomfort and suffering.
Shannon Gray I experienced pericardial effusion, significant, and the a reoccurrence of pericarditis. It is really ... Read more
Shannon Gray I experienced pericardial effusion, significant, and the a reoccurrence of pericarditis. It is really hard stuff!!! I am thankful for my dr.s strict regime with colchsibe...it's not a medication to go off and on with, or stop cold turkey. They set up a tapering pattern. I exc., but always stayed mindful to keep my heart rate low during exc....my exc specialist kept getting after me to work harder and get that heart rate up....I just smiled and nodded:) it's a tricky yucky thing....prayers you find help soon. Ask any questions!
Lise Bowles Dear Shannon,
I went to CC today and saw the cardiologist down there. She was quite adamate about st ... Read more
Lise Bowles Dear Shannon,
I went to CC today and saw the cardiologist down there. She was quite adamate about staying on the colchicine for at least 3 months. She also wants me to take ibuprofen 600 mg. 3 x a day! I cannot imagine that won't rip my stomach to pieces. As long as I am on the colchicine I don't feel any pain so I am not sure doing both won't hurt more than help. She said if I won't do that the other option is prednisone! Ugh, I took that once and it made me crazy, so I will try the ibuprophen with the colchicine. My cardio doc in town sent me to a pulmonary doctor and after 2 months on the colchicine 2 x a day she took me down to one a day for 2 weeks and then off of it. Was your tapering longer? Btw, did you have an MRI to determine you had pericarditus or did your doc go by your symptoms? The doc I saw today was very surprised that I had that diagnosis with no MRI! Your doc sounds much better than mine!
Thank you for listening, Lise
Shannon Gray I was on colchicine for 3 months...then for about 2/3 weeks after I tapered gradually off...even taki ... Read more
Shannon Gray I was on colchicine for 3 months...then for about 2/3 weeks after I tapered gradually off...even taking half a tablet. Yes...take ibuprofen for a few weeks with it...that's what I did. Stomach was not happy, but I managed. Stay away from steroids to help this....studies show steroids can actually "bring it back". I was in really bad shape with the significant pericardial effusion...I hadn't left CC yet after surgery, so I was rushed back. It all happened so fast, which is why I had to have surgery and a pericardial window to drain the fluid. I was in ICU for a week and then step down for another week with chest tubes draining up until my last day. The pericarditis happened two weeks after I came home. My dr had an echo done, and he could see inflammation on that, plus you can hear a rubbing sound with stethoscope. No Mri done, even when I went back to CC at 10 weeks after surgery for another check in. They can do blood test to check, as well. I truly wish you well....ask any questions and know I am here to help you.
Lise Bowles I read about the steroid response. I will try to do the ibuprofen or 650 mg aspirin 3 x a day. Did yo ... Read more
Lise Bowles I read about the steroid response. I will try to do the ibuprofen or 650 mg aspirin 3 x a day. Did you have robotic surgery btw?
Shannon Gray No..it was a mini- sternotomy. I believe
there is a test for Dressler's syndrome...but not 100% sure. ... Read more
Shannon Gray No..it was a mini- sternotomy. I believe
there is a test for Dressler's syndrome...but not 100% sure. May be something to look into. Wishing you the best!
Lise Bowles The CC doc changed my medicine to molaxicam 1 time a day and the colchicine, for 3 months, please God ... Read more
Lise Bowles The CC doc changed my medicine to molaxicam 1 time a day and the colchicine, for 3 months, please God let this be the answer! 9 Advil in 24 hours was ripping my stomach to shreds!
Finally feeling a bit better, but, I still feel a heaviness in my chest with a deep breath! I stopped the colchicine, it didn't agree with me, and am strictly ...Read more
Finally feeling a bit better, but, I still feel a heaviness in my chest with a deep breath! I stopped the colchicine, it didn't agree with me, and am strictly on maloxicam which is a one a day prescription anti inflammatory. My cardio doc says three months on that! I hate taking medication! I don't quite understand that 4 1/2 months after my robotic surgery I would still have such inflammation and pain. (If I stop the medication) I was totally prepared to be back to my regular life within a month of surgery. At least that's what I was lead to believe! People ask me "do you feel better since the surgery? " I say "certainly not, I had no symptoms before my operation, now I do!" It's discouraging! Well I am grateful that at least I am on the way to recovery......
After the CT scans revealing I have a small pleural effusion in each lung and a small bit of periocaditus I can only assume that's what is causing my remaining discomfort. I have been exercising each day for the past week, so maybe that will help. Not climbing Mt. Everest mind you, but reasonable exercise. Enough to break a good sweat and hopefully get rid of some of the remaining water in my lungs. Thank you for the support and I do feel grateful my heart is fixed. Best wishes to all and hopefully 2017 will be a smashing year for us all!
Rita Savelis I hear you Leesa, and had very similar feelings - not feeling "better" after surgery.
Your heart is b ... Read more
Rita Savelis I hear you Leesa, and had very similar feelings - not feeling "better" after surgery.
Your heart is better now, I'm sure, but you have to deal with the lungs, as they adjust...
I've still got a bit of water in my lung linings 21 months after OHS. It absorbs slowly, I'm told....
I hated the question "do you feel better?" because what to say? OHS brought its own set of problems to other organs to resolve. They do go away, but it can take time and it's frustrating.
But you take the next steps.
Best wishes for 2017 and water-free lungs!
Catie B I so understand how frustrating it is to have these new things to contend with and for your quality o ... Read more
Catie B I so understand how frustrating it is to have these new things to contend with and for your quality of life to be changed so much after surgery. I hope things resolve for you soon so you can feel better, Lise.
Well after a third bout of what they are calling pleurisy, my cardiologist did a CT scan. First one with no contrast and then he sent me to a pulmonologist ...Read more
Well after a third bout of what they are calling pleurisy, my cardiologist did a CT scan. First one with no contrast and then he sent me to a pulmonologist and she did one with contrast! I am sure I am like a nightlight, I glow in the dark. Anyhoo, thats another issue. Needless to say they found a small pleural effusion in each of my lungs and a small amount on fluid in the pericardial sac as well. The cardiologist just wants to put me back on anti inflammatories. I am concerned because I want to do something that will get rid of this and not just block the pain. The pulmonologist wants to also put me on a drug that is commonly used for gout. Its called colchicine. Has anyone had any experience with this? I would love some feedback, its a long way back to Cleveland Clinic!
Steve Farthing Hi Lise - there is a search box at the top of the web page although it is almost invisible. If you s ... Read more
Steve Farthing Hi Lise - there is a search box at the top of the web page although it is almost invisible. If you search on colchicine, you will find info and many others who have unfortunately had to deal with similar issues. Maybe something there will help. Hope so.
Amy Dorsey Lise!! Ahhhh!! I feel for you! I had that issue on one lung and it was excruciating!!! Unfortunatel ... Read more
Amy Dorsey Lise!! Ahhhh!! I feel for you! I had that issue on one lung and it was excruciating!!! Unfortunately for me they said I had to ride it out because it was small and it would go away on its own. Of course that never makes you feel better to wait it out but I did. Still can't inhale 100% but they say it's scar tissue on my lung preventing that. I know when I was going through this no amount of pain meds worked for me or anti-inflammatories. I'm praying this clears up for you soon!!! 😢
Rita Savelis I had 4 pleural effusions in 7 weeks after OHS , each one drained by a 10 minute puncture procedure. ... Read more
Rita Savelis I had 4 pleural effusions in 7 weeks after OHS , each one drained by a 10 minute puncture procedure. For the 4th one they tried antiinflammatories which didn't work for me and put me back in the hospital (by ambulance at midnight!)....
I don't think I've ever gotten my lung capacity back 100% (scarring) but those puncture procedures meant immediate relief and I eagerly awaited each one.
Sadly this is a common "side effect" of OHS.
It can make one really tired. I felt extremely energetic after each lung lining was drained.
I wish you relief soon.
Take care.
Shannon Gray I was on colchicine...I ended up with a pericardial effusion that was so bad I had a second emergency ... Read more
Shannon Gray I was on colchicine...I ended up with a pericardial effusion that was so bad I had a second emergency surgery to drain the fluid from the pericardial sac. They switched me to anti inflammatories, but then pericarditis ca,r back ( that's just the inflammation of the heart sac). They then put me on colchicine again for 3 months...please make sure your dr is knowledgable about the medicine...how much, and especially how to taper off the medicine. You are not supposed to go cold turkey with colchicine. I wish you well and hope this will all be resolved quickly.
Mary Olsen Take the Meds.I,as you had both complications after AVR.Was put on Colchine for 6 months.Your doctor ... Read more
Mary Olsen Take the Meds.I,as you had both complications after AVR.Was put on Colchine for 6 months.Your doctor will monitor you during the medication.It kept the inflammation in check.Wishing you well
Darlene Smith I was on Colchicine and anti inflammatories and that did the trick for me. I had what they called po ... Read more
Darlene Smith I was on Colchicine and anti inflammatories and that did the trick for me. I had what they called post pericardiotomy syndrome. I had 3 ER visits, and two hospitalizations, one where they inserted a catheter to drain the fluid. But thankfully the Colchicine worked. One of the common side effects though is diarrhea, so I had to stop for a while, and then start back up at half dose. But everything resolved itself eventually.
Darlene Smith Hi Lisa, I think so. I've been pain free for about 8 weeks now, and I feel great. I was told there ... Read more
Darlene Smith Hi Lisa, I think so. I've been pain free for about 8 weeks now, and I feel great. I was told there is still a small amount of fluid, but as long as I have no symptoms, I'm assuming the fluid is either gone by now, or negligible. I see my cardio again in Feb, so unless something happens between now and then, I think I'm good. Thank you for asking!!
Hi Everybody!
I was doing quite well at cardio rehab and then 3weeks ago I had a terrible attack of pleurisy! I thought I was having a heart attack and ran ...Read more
Hi Everybody!
I was doing quite well at cardio rehab and then 3weeks ago I had a terrible attack of pleurisy! I thought I was having a heart attack and ran to my cardio MD and he gave me an ekg and a few other tests and said it was classic pluerisy! Ugh!
He said it can be caused by a virus, )I wasn't the least bit sick, except the sudden onset of lung, shoulder, and neck pain intensified by my breathing!
Apparently can also be caused by an anurism in the lung or by heart surgery or a rib injury. It was excruciating! And my rib under my right breast is still very very sore, so he put me on malaxicam (strong anti inflammatory and told me to stay on it for a week.) All went well and after a few days the worst of the pain had subsided and I felt much better, UNTIL last night!!! Ouch! It hit me again suddenly and the pain was so terrible I thought I was going to faint, or I wished I would!
I immediately started the malaxicam again and hydrocodone for the pain and here I am in bed for Thanksgivig, oh well. Can anybody tell me if they have had this as a result of heart surgery? My doc is in NYC thru Monday and since it's the same as last time I am just hoping to treat it the same way, .
I am wondering if the upper body work with my arms that I restarted Monday at rehab might have triggered it. I had stopped upper body for a month because of rib pain and the cardio rehab guy had me start it again, ugh! My surgery had been a little over 3 months ago, I am frustrated!
Thanks for listening!
Lise
Catie B Ouch, Lise! I'm so sorry you're in all this pain!
I had pleurisy soon after surgery from the chest tu ... Read more
Catie B Ouch, Lise! I'm so sorry you're in all this pain!
I had pleurisy soon after surgery from the chest tube, effusion on both sides, and the procedure to remove fluid from around the R lung, Breathing and breathing exercises were torturous for about 7-10 days. I hate that you've had it not once but twice now. Gosh, I hope you feel better soon!
Lise Bowles Thank you Catie! I cannot understand the reason for this, I have really had a hard time from this rob ... Read more
Lise Bowles Thank you Catie! I cannot understand the reason for this, I have really had a hard time from this robotic surgery. Sigh!
Amy Dorsey So far you and I have had the exact same experience with this robotic surgery, however, I'm not under ... Read more
Amy Dorsey So far you and I have had the exact same experience with this robotic surgery, however, I'm not understanding why the pleurisy at this point. I had it for the first two months after surgery. I know the excruciating pain! Now I just have the same annoying pain under my right breast from the surgery and the nerves and muscles trying to repair. Still can't feel my back muscles on that side or my breast. Plus I have a shoulder impingement on the right side now that's really painful. Long process!! 💗💗💗
Lise Bowles Me too Amy, me too! I am thinking the pleurisy is from straining the rib because I just added the upp ... Read more
Lise Bowles Me too Amy, me too! I am thinking the pleurisy is from straining the rib because I just added the upper body work back into the cardio rehab on Monday and this started again on Wednesday. My rib and under my breast on the right is still very sore as well as my back being numb on that side!
Phyllis Petersen Oh no! I remember the pleural effusion after surgery and how much that hurt. Thankfully, mine didn't ... Read more
Phyllis Petersen Oh no! I remember the pleural effusion after surgery and how much that hurt. Thankfully, mine didn't require additional intervention (I had more after the tube was removed). Hopefully, you'll get through this quickly and can move forward in your rehab. I especially watch you and Amy for clues, since I had robotic too. I thought the continuing soreness in the right breast was from the healing inflammation I had in the hole for the robot underneath. I see, too, that the numbness will probably continue for awhile. I'm not a very patient person when it comes to healing. I guess our bodies get to say what pace we move forward at.
Hi Everybody!
Today was my first day of cardio rehab, 6 weeks from surgery. It was 4 10 minute segments on different machines. It felt quite easy while I was ...Read more
Hi Everybody!
Today was my first day of cardio rehab, 6 weeks from surgery. It was 4 10 minute segments on different machines. It felt quite easy while I was doing it but later in the day I was soooo tired. It seemed silly compared to what I did before surgery but I guess it's all part of healing. I am slowly progressing and my right side where my incisions are is still very sore and numb in some spots. I hope this finds you are progressing well.
That visit to my primary care doc Iin April sure changed my life! People say, "so do you feel better?" At this point the answer is an emphatic "no!" As I was asymptomatic and never felt bad. Yes I was a bit more tired with a bit less energy but I thought it was getting older! I am hoping once the pain lessens even more, I may surprise myself and feel more energy. Crossing my fingers!
Lise
Roseline Rosario Good to hear your in good spirits and could bring the exercises to completion! Yay!
Diane Zeigler I am so happy to see your post and to learn that you are feeling better. I Just hate cardio rehab. I ... Read more
Diane Zeigler I am so happy to see your post and to learn that you are feeling better. I Just hate cardio rehab. I get so tired and when I leave and get in my car i will get muscle spasms in my lower back. I am such a couch potato! Somebody please motivate me!
Amy Dorsey I'm still in the same boat with the discomfort in the right breast area. Ugh. Seems like it's going t ... Read more
Amy Dorsey I'm still in the same boat with the discomfort in the right breast area. Ugh. Seems like it's going to take a very long time if ever to heal the muscles and nerves that were cut. I'm still only finding relief with Lidocaine patches. I hate when it's time to take them off. Glad you made it to rehab!! 💗💗💗
Corey Sines Sorry Lisa and Amy that your recoveries has been less that stellar. I know both of you expected to b ... Read more
Corey Sines Sorry Lisa and Amy that your recoveries has been less that stellar. I know both of you expected to be close to 100% by now. Diane Exercise, takes time to really feel the effects, its not until you have been doing it for a few weeks that your really start to feel better, stronger, and loose a little weight. Then you start to crave that feeling, so hang in there!
Emily Rowley It's good to hear you are off to a good start at rehab 🙂 I hope your pain around your incision imp ... Read more
Emily Rowley It's good to hear you are off to a good start at rehab 🙂 I hope your pain around your incision improves. Oh okay, it takes awhile to feel better after major surgery.
Catie B So glad to hear how well you are faring, Lise!
Steven Dean The first couple of times i went for a light jog I was so tired after, it is getting better though.
Diana Garvey I am glad to hear your experience. I will probably be starting cardiac rehab soon. I am only 4 weeks ... Read more
Diana Garvey I am glad to hear your experience. I will probably be starting cardiac rehab soon. I am only 4 weeks post surgery. I am walking every day, but I was curious about what they'll have me do at rehab. Like you, I felt pretty good before my surgery. I was active and did yoga several times/week and walked a couple miles every day. And like you, I attributed my shortness of breath to aging. I just turned 64. I guess it sounds like rehab will be challenging. Thanks for sharing.
Diane Zeigler It is so interesting how we change day by day. I went to rehab today and did my best ever. I rode o ... Read more
Diane Zeigler It is so interesting how we change day by day. I went to rehab today and did my best ever. I rode on the recumbent bike for 50 minutes and upped the intensity two levels! I was so proud of myself! Now I don't mind going so much tomorrow.
Lise Bowles Amy, I've gone off the medication, anti inflammatory, and am just using the patches now too, and I ag ... Read more
Lise Bowles Amy, I've gone off the medication, anti inflammatory, and am just using the patches now too, and I agree, I wish I could wear them 24/7! They really do help, don't they?
Diane, good work!
Diana, they start you real slow and work up, so that's good, it almost seems to easy, but I am sure it will get more difficult!
Hi everybody, I am sorry I dropped out of sight biut I was just feeling terrible as the post below confirms! I could not find a painkiller that didn't make ...Read more
Hi everybody, I am sorry I dropped out of sight biut I was just feeling terrible as the post below confirms! I could not find a painkiller that didn't make me feel sick as a dog and the drugs they had me on we're all doing nothing. I read below that a muscle relaxer would have helped but unfortunately I didn't read that till today! Ugh! That makes perfect sense in retrospect because I was having such bad back and chest muscle spasms, omg! I am just shocked that none of the docs I went to didn't prescribe that! Go figure, but somehow I made it through and here I am feeling semi human again and just taking the rest of this recovery process one day at a time!
Whoever thinks robotic surgery is a day at the beach think again, mine was really painful!
Just wondering how long does it take for a sternotomy to heal? I would imagine that seems like forever but robotic has lots of incisions, 6 to be exact, and one of them is about 4 1/2 inches! They are still very sore, and the stitches still are dissolving.
Thank you for listening and thank you for your feedback, Lise
Catie B So sorry, Lise, that they didn't offer you a muscle relaxer in the thick of all those spasms! I'm so ... Read more
Catie B So sorry, Lise, that they didn't offer you a muscle relaxer in the thick of all those spasms! I'm sorry it's taken so long to feel better. I hope your journey will be much easier from this point on.
Darlene Smith I had my sternotomy 8 weeks ago today. I have been pain free since day 3 in the hospital. (Seriousl ... Read more
Darlene Smith I had my sternotomy 8 weeks ago today. I have been pain free since day 3 in the hospital. (Seriously, I'm really not kidding, but I also had the mini one, about 4 inches long). I don't know why it didn't hurt, but it didn't. I was cleared to drive at 6 weeks when the surgeon saw me at follow up. I had glue on the outside of the incision, and no external staples or stitches that had to be removed. The glue peeled off after a couple weeks. Not sure when its considered fully healed, but for me pain free and driving is good enough. I will also say that my mother in law, who had her open heart surgery in 1992, says her sternotomy still hurts. Seems to be a truly individual experience.
Steven A Husted yes we are all different some of us may take up to 6 months for the sternum to heal and others may ta ... Read more
Steven A Husted yes we are all different some of us may take up to 6 months for the sternum to heal and others may take up to a year there have been some that heal faster than others but time is a great healer so dont worry you will do fine
Robert D'Aurora Thanks for sharing, hope you feel better, sounds like you have been through an ordeal! I'm getting te ... Read more
Robert D'Aurora Thanks for sharing, hope you feel better, sounds like you have been through an ordeal! I'm getting tested for robotic surgery in Oct, I will express my concerns, take care
Diane Zeigler I am so glad you are back to posting. I was really concerned about you. Hope it will get better and ... Read more
Diane Zeigler I am so glad you are back to posting. I was really concerned about you. Hope it will get better and better. Good luck!
Rita Savelis So glad you're feeling better. Everyone is different but scar length has no real correlation with how ... Read more
Rita Savelis So glad you're feeling better. Everyone is different but scar length has no real correlation with how much pain you will feel. That is a sad misconception.
The sternum itself takes about 6 weeks to heal, but I find that I still, much much later, can feel my sternum - there is a tightening and a stretching. It's not pain at all, just a constant awareness.
I am not pulling any punches here, this is terrible! I feel terrible! I cannot deal with all of this pain! I am taking painkillers, tramadol, hydrocodone, gabapentin, ...Read more
I am not pulling any punches here, this is terrible! I feel terrible! I cannot deal with all of this pain! I am taking painkillers, tramadol, hydrocodone, gabapentin, tylenol, and nothing is working! I have such pain in my back right shoulder blade a am unable to exercise, or barely do my necessary functioning around the house, much less go back to work in a week as advertised on the CC website. I have contacted my surgeon twice, gone to the ER once and been told that this is very uncommon for robotic surgery. Yesterday I had a chest X-ray which came back "perfectly normal" . I am so uncomfortable I could just cry. As a matter of fact many times I have.
I hate to rain on everyone's parade but as of Wednesday its been two weeks and I just don't think I can handle this pain. I am so depressed and when I look at these postings I just can't believe that I had even close to the same surgery. It seems as though no one else has had robotic surgery in this site except one other person, what happened to all the people who made up the statistics of resuming normal activities in a week or so? Please help, I am just miserable with muscle spasms and rib pain......Lise
PS. I have been to my cardiologist 2 times since I have been home, my PCP once and I go see her again this morning. They could not find anything wrong, just post surgical pain.
Bridget Sawmiller If you have alot of nerve damage would it be possible for your doctor to prescribe Lyrica? I had Shin ... Read more
Bridget Sawmiller If you have alot of nerve damage would it be possible for your doctor to prescribe Lyrica? I had Shingles last year in August and they prescribed Lyrica, it is also prescribed for patients that have diabetic neuropathy. It might be worth at least asking. I had severe nerve damage in my torso from the Shingles and the Lyrica helped me. I do not need it any longer.
Corey Sines So sorry you are in so much pain. It really sucks to be on the wrong side of surgery/recovery, and it ... Read more
Corey Sines So sorry you are in so much pain. It really sucks to be on the wrong side of surgery/recovery, and it isn't fair. How would you describe the pain? How does your heart look after the repair? Did they recheck it recently? Is the pain on the same side the primarily "cut" for the Robotic surgery, or the opposite side?
If they can't find anything physically wrong, you could ask your Surgeon about perhaps massage / chiropractic help? Not sure if two weeks is too soon for that kind of treatment, but for some it works wonders for pain.
Barbara Wood Wow Lise, so sorry to read about all your pain...really hope you can get some relief for that! Like y ... Read more
Barbara Wood Wow Lise, so sorry to read about all your pain...really hope you can get some relief for that! Like you I had left sided chest radiation ( breast cancer) & think I will be steered to the procedure where they go in on the right side, is that what you had? The experiences you & Amy have had has been a real eye opener for me. Best wishes to you!
Lise Bowles Barbara, yes they went in on the right side! Corey it is on the same side as they went in, the right ... Read more
Lise Bowles Barbara, yes they went in on the right side! Corey it is on the same side as they went in, the right side, it's a very sharp acute pain.
Catie B Oh my. I am just so sorry, Lise. I hope they find something that eases this pain.
Corey Sines Is the pain worse when you breath deep? Is it a constant pain or varying in intensity? (Throbs worse ... Read more
Corey Sines Is the pain worse when you breath deep? Is it a constant pain or varying in intensity? (Throbs worse) Do meds provide any relief? Anything that makes it worse (moving a certain way, etc)?
Jean Raber God, doctors. If they can't see it, it doesn't exist. Do you have a pain clinic you can go to? They w ... Read more
Jean Raber God, doctors. If they can't see it, it doesn't exist. Do you have a pain clinic you can go to? They will ask a lit if the questions Corey has. When pain goes on and on like this, people don't develop a tolerance to it. If anything, they get more sensitive to the pain. And when your body is firing pain signals over long periods, it creates stress, because we're wired to interpret pain as danger. Do you have a family member who can advocate for you with a pain specialist or your doc's? You're not raining in parades here. Heart surgery remains a traumatic surgery with many variables. Fabulous recovery stories are great, but they really aren't the norm. Because there is no norm. I hope you will get relief soon. Please keep writing. You are helping keep it real.
Meredith Bray What about a physical therapist? I had AWFUL back pain (worse than the surgery pain) that the PT help ... Read more
Meredith Bray What about a physical therapist? I had AWFUL back pain (worse than the surgery pain) that the PT helped me through with stretches and exercises, a little bit at a time. Or a massage from a medical massage therapist? I'm sorry you're hurting, I feel for you. If I stumble across anything, I'll let you know.
Meredith
Sophia Ridley I agree with Meredith, PT may help. I had OHS but have a ligament condition which caused a few issues ... Read more
Sophia Ridley I agree with Meredith, PT may help. I had OHS but have a ligament condition which caused a few issues. My shoulder would cease, pain was like no other - PT helped immensely. I'm going back tomorrow to fix my dodgy knee from trying to run.
Regardless if robotic/OHS, you have been on a considerable journey. It will take time. I still now (9mth) will measure myself against expectation, I'm not out of the woods yet. A year is my marker now rather than 3 months.
Darlene Smith Lise, I'm so sorry you are having so much pain. I believe the surgical team has a responsibility to ... Read more
Darlene Smith Lise, I'm so sorry you are having so much pain. I believe the surgical team has a responsibility to get that under control, and if they are not doing that and just sending you home, then that is unacceptable. How can you have been discharged like that?? CC needs to help you.
Barbara Laurie PT, PT,PT.. Lise, ask your doctor to a referral for PT, but not just any pt.. You need the type of pt ... Read more
Barbara Laurie PT, PT,PT.. Lise, ask your doctor to a referral for PT, but not just any pt.. You need the type of pt who will be hands on your body, working your muscles and helping you move again. So interview them to get a good fit. Also.. Why are you taking gabapentin? That drug can really affect mood for the negative, I know since I take it! And, if you are having muscle spasm, where is the muscle relaxer..tramadol AND hydrocodone I'd still just narcotic...no wonder you're crying! Forget the surgical team...you need your primary care doctor to be the head doc now..to prescribe the right meds for you. Like, whatever narcotic, a strong muscle relaxer like Valium and PT and maybe weaning off gabapentin unless you have neuropathy.
I hope you get answers soon Lise, don't despair and don't compare your immediate outcome to others. Best💕🌻hugs❤️
Wanda Mroz I had severe pain in my shoulder blades for awhile after OHS. I was prescribed Robaxin which is a mu ... Read more
Wanda Mroz I had severe pain in my shoulder blades for awhile after OHS. I was prescribed Robaxin which is a muscle relaxer and that helped a lot. I also used hot packs and cold packs and while in the hospital PT loosened up the area by massaging it and gave me a tennis ball on a string to help loosen the muscles. I hope you get answers soon. Gosh robotic surgery is supposed to make things easier? I guess not always. I'm sorry you are having such a difficult time. Anyway I do hope you feel better soon. 🙏🏻💞
I hate to sound like a whiner but as you know I am very uncomfortable with pain. I hate taking drugs, I'm an old flower child at heart, but I want to be reAlistic, ...Read more
I hate to sound like a whiner but as you know I am very uncomfortable with pain. I hate taking drugs, I'm an old flower child at heart, but I want to be reAlistic, I was wondering how long did this group as a rule have to stay on painkillers? I have tried everything from Advil to strength Tylenol, to OxyContin ( I couldnt take them, they made me hallucinate) to tramadol to hydrocodone and acetiminaphin, and gabapentin. I have not found a solution that give me some smooth relief. Fits and spurts but then the aching continues. It's been 11 days and I am feeling bad that I am not further along. Am I being to hard on myself? Remember I had robotic, lots of nerve damage....feedback please, Lise
Emily Rowley We all are different and recovery at our own pace. I'm like you in terms of taking pain killers with ... Read more
Emily Rowley We all are different and recovery at our own pace. I'm like you in terms of taking pain killers with having bad side effects, when on Warfarin I had to be very careful what other medication I took and it was limited, now off Warfarin I can take Aspirin and Ibuprofen and Panadol. Usually the nurses administer pain meds regularly every couple of hours in Hospital for about a week. I was lucky in terms of not experiencing pain all the time unlike others who have been through terrible chronic pain following surgery; therefore I took pain meds for 3 weeks post-op gradually cutting down my dosage so by 3 months post-op I was only taking pain killers when I absolutely needed them. But take in my I had a full sternum cut. I tried other natural remedies-I found massages by someone who does cardiac patients helped alot! Where do you find most your pain is coming from such as ribs or neck etc? Hope this helps and hoping you are feeling less pain shortly 💟 Take it easy on yourself and care, recovery takes time and patience xx
Lise Bowles Thank you Emily, it's only been 11 days so not very long, it's good to hear your experience. You know ... Read more
Lise Bowles Thank you Emily, it's only been 11 days so not very long, it's good to hear your experience. You know, a full sternotomy sounds terrible but when I went to my PCP the other day she said "you had a 5" incision on your side, your ribs pried apart and 4 other holes drilled for the instruments from your side to your heart. So realistically you had just as much damage as OHS, the only difference is yours was internal rather than visible on the outside. Omg! Why didn't I think of that? For some reason I thought the robotic was much less involved!
Thank you for your feedback, I am using the gaba during the day and tramadol and ambien at night, hopefully it will be over soon and I won't become dependent on them!
Rita Savelis Yes, you are being hard too on yourself. Pain varies and you've been through a lot.
It's okay to "wh ... Read more
Rita Savelis Yes, you are being hard too on yourself. Pain varies and you've been through a lot.
It's okay to "whine", and to keep asking doctors for something that will give you relief. I hope that relief will come soon, but carry on with meds as long as you need to.
PJ Fugitt Lise, our lives are very parallel in so many ways. From the old hippie to the use of drugs. I could n ... Read more
PJ Fugitt Lise, our lives are very parallel in so many ways. From the old hippie to the use of drugs. I could not take any of the pain meds due to nausea and basically what they could give me was really really not working. I was given Tylenol from the get go! I thought WTF!! Tylenol and OHS this is insane! Finally I got lidocaine patches to put on either side of my sternum incision. This actually helped a lot! 12 hrs. on and 12 hrs. off. It relieved some of the pain and the nerve endings. I was on them for 3 weeks. Then when I got home Medicare refused to pay for them finding they were unnecessary for what they were being used for- they are non-narcotic! They would rather have me on narcotics or opiates! Go figure!
I appealed it 3 times to no avail. Ask your doctor if he will prescribe for you. Since you are younger your insurance may pay for them. Medicare would not pay and they wanted $20 a patch! So winging it on extra strength Tylenol and lots of pillows!!! Amy is your go-to-girl as for understanding the robotics and your body when I know she has helped you tremendously in figuring all this out. This old girl just did not pass the test for Dr. Gillinov to perform robotics. I was like you and thought it would be easier on the body- but listening to Amy, Dan and you I now know all of it is because we are all dealing with trauma to the body but the blessing is in this day and time - we all now have a good working heart! Prayers and Blessings to you Lise.
Lise Bowles PJ, Unfortunately the lidocaine patches they put on me after the surgery caused a huge allergic react ... Read more
Lise Bowles PJ, Unfortunately the lidocaine patches they put on me after the surgery caused a huge allergic reaction, in that I had bumps all over my chest and neck from them and they bled!!! Such an unfortunate situation. I am using a neurogenic agent called gabapentin now since Thursday, it was Dr. G's recommendation and my local doc prescribed it. Apparently it works to repair the damaged nerve endings. I have to say it doesn't seem to do much, but that is taken 3 x a day and then at night I am taking tramadone and ambien. Yuck, but at least I am getting a few hours sleep. The rib damage soreness is the killer, I feel like I've been playing quarterback for the Miami Dolphins!
Jean Raber Stories on here are all over the place, lots of people saying they had no pain, and others having pai ... Read more
Jean Raber Stories on here are all over the place, lots of people saying they had no pain, and others having pain that lasted much longer. So, yes, everyone is different, and 11 days is not long after surgery. Sometimes things feel worse as the trauma area starts to knit up. I hope you find something that works!
Amy Dorsey Lise...i'm telling you, that rib pain for me ended up being the pleural effusion
David C 11 days is not long at all. I was told by every nurse or doctor I met to eliminate the pain and not w ... Read more
David C 11 days is not long at all. I was told by every nurse or doctor I met to eliminate the pain and not worry about the narcotics. Sounds like you have allergy problems, though. Is there nothing else they can prescribe for a pain med? After the first week, I would go a day or two only on tylenol, then feel like I might be getting increasingly sore, so I'd take a tramadol [not as strong] or an Oxy at night to help me get some sleep. I never really got sore, so much as felt tired and worn out, or heard my heart beating very loudly. This was going on all the way to last week [7 weeks] to be honest. I still feel/hear my heart beating loudly when I am trying to fall asleep.
PJ Fugitt Lise, wow You are really walking through the medicine cabinet with your reaction to the patches and o ... Read more
PJ Fugitt Lise, wow You are really walking through the medicine cabinet with your reaction to the patches and other meds prescribed. Hang in there!!! My heart goes out to you, Amy and Dan with all of your different issues. I only hope you all can get it worked out soon. As for pain I am 4 weeks out and still have it with no relief except a hot shower and sitting down in my sturdy shower chair with a back (purchased at Home Depot which I love) to just let the warm water wash over me and my long hair! Water has given me the best relief and therapy since I can't take the pain meds! Best wishes.
David C @PJ I never really had any pain, but that's because I was able to take all kinds of medication! I can ... Read more
David C @PJ I never really had any pain, but that's because I was able to take all kinds of medication! I cannot imagine going through this sans things like Oxy or Tramadol...I got behind my pain meds once in the ICU and started wilting...My heart [no pun intended] goes out to you and anyone without the ability to medicate. I feel like someone needs to find something else for people who can't take the standard stuff...
Hi! How many of you out there in heart valve land have had robotic surgery? I would love to know if it has been a similar experience to mine. I went into it ...Read more
Hi! How many of you out there in heart valve land have had robotic surgery? I would love to know if it has been a similar experience to mine. I went into it frankly thinking it would be a walk in the park, (maybe I wasn't that naive but still I was really unprepared for the trauma and pain. When one has a sternotomy does it immobilize you with pain? Do you get muscle spasms in your back?
How long does it take to start to feel human again?
I am delighted that my Doc was able to repair my valve don't get me wrong but I just thought this was the easier, softer way! It has only been 10 days! Welcome to reality Lise!
Darlene Smith I had a mini sternotomy (about 4 inches) and was expecting a lot of pain. I was essentially pain fre ... Read more
Darlene Smith I had a mini sternotomy (about 4 inches) and was expecting a lot of pain. I was essentially pain free by day 3 and off all narcotics. I had no muscle spasms in my back. I hear the robotic method is more painful, but with heart surgery, it seems each of us has a different experience with quite a variety of pain levels. I will say that after seeing all the challenges with the robots, I'm glad I did not choose that method.
Clare Auten I did have a full sternotomy. I did have back and shoulder pain at times. Also sneezing, coughing, ... Read more
Clare Auten I did have a full sternotomy. I did have back and shoulder pain at times. Also sneezing, coughing, vomiting, etc were also painful. I have heard that the less invasive procedures can be more painful because they are going through more muscle vs. the bone.
I am with Darlene same procedure and I opted not to do robotic even though my surgeon was skilled to ... Read more
I am with Darlene same procedure and I opted not to do robotic even though my surgeon was skilled to do it. Amy did the robotic and seems to have had more pain than me. With her story and my own research I again opted not to do robotic. I have been pretty much pain free as well and could drive much sooner 3 weeks.
Rita Savelis There is no walk in the park when it comes to heart surgery, really. And I feel bad that the medical ... Read more
Rita Savelis There is no walk in the park when it comes to heart surgery, really. And I feel bad that the medical profession made you feel that it would be easy.
Trauma is there when you have heart surgery. It's hard to "prepare" for this trauma but it is good to know that it can happen.
I personally felt no pain where my sternotomy was. LOTS of discomfort and a tight pulling, but no pain. It hurts more to have ribs broken than a sternum cut. I was told this ahead of time by my anasthesiologist and it was correct for me.
Many patients have pain, which often comes from the fact that their bodies are in difficult positions during surgery and they have muscle pain afterwards. It is different for everyone.
It can take a very long time to feel "human" again, especially if our expectations are high, and we imagine others as breezing through this all.
For me, despite having little actual pain, it was a very traumatic experience physically and emotionally so it took many many months to feel like I was "over" the experience.
Emily Rowley Rita, I found your message comforting thank you 💕 I was wondering if bad dreams about having heart ... Read more
Emily Rowley Rita, I found your message comforting thank you 💕 I was wondering if bad dreams about having heart problems after surgery is normal and why do we (unsure if anyone else has these) experience these since we have our hearts mended?
Lise Bowles I have a bit of PTSD from the whole experience, as Rita said, this is a very traumatic experience!
Thomas Santerre I had a mini thoracotomy for a mitral valve repair. 5 centimeter incision. I would concur with Rita ... Read more
Thomas Santerre I had a mini thoracotomy for a mitral valve repair. 5 centimeter incision. I would concur with Rita when she says there is no walk in the park when it comes to heart surgery. The first two weeks are going to be uncomfortable. My experience beyond those two weeks has been very good. I feel very lucky having read of many other fellow valve patients' experiences. It is a difficult thing when expectations and actual experiences diverge. I say I feel great after 26 days and I do. But I would not say that I am back to the way I was pre-surgery. I know this will come as the improvement is steady day by day. Sure there are bad days, but overall the improvement is happening. I believe my attitude and generally optimistic nature have helped me immensely. I know this may not help you as this is a reflection of my own personality, but i believe we all have reserves within ourselves to cope with these difficult situations. Good luck to you and may your own recovery continue to progress.
Darlene Smith Emily, I was fine emotionally after the surgery, but then after the complications I started having th ... Read more
Darlene Smith Emily, I was fine emotionally after the surgery, but then after the complications I started having these waking nightmares. I wasn't asleep, but I was crying, sobbing really, and yet my heart was fixed and the fluid had been drained and physically I felt great. Yet I continue to this day to have these thoughts that play over and over in my head. Its terrible. I'm sure I'll get through it. I was so strong before and after surgery, and then all of a sudden the emotional stuff kicked in. Hate it. But I'm sure I will get through it. Just hard right now.
Conrad Skowronski I had a full sterno. After surgery my lower back and lower right back ribs hurt along with my right ... Read more
Conrad Skowronski I had a full sterno. After surgery my lower back and lower right back ribs hurt along with my right shoulder blade area. This got better after a few days at home. Never had any pain at the incision site or left side. Now in week 5 -- no pain whatesoever, just right chest numb.
Rita Savelis Bad dreams are normal. Everything is "normal", really.
PTSD is common.
Rita Savelis Bad dreams are normal. Everything is "normal", really.
PTSD is common.
I think much emotional processing comes later, after we make it through the tough physical stuff. And this surprises many, who wonder : why am I not "over" this yet? Why am I not like I was before, only better?
None of this emotional upheaval means you're not strong. You are all very strong. You are all amazing, really.
Take care.
Amy Dorsey I wonder how many people have had the robotic surgery on this site. Seems like almost everyone gets ... Read more
Amy Dorsey I wonder how many people have had the robotic surgery on this site. Seems like almost everyone gets the sternum surgery or another type of minimally invasive surgery. I really can't stand the term minimally invasive because it's not minimal at all LOL. It would be interesting to find more robotic repair patients to compair with.
Darlene Smith Amy, I totally agree with you!!!! I think the word "minimally" implies something far different to th ... Read more
Darlene Smith Amy, I totally agree with you!!!! I think the word "minimally" implies something far different to the surgeons that it does us patients!! And I don't think they are explaining it very well either.
Hi everybody,
Omg, yes it's 3:52 am and I woke up to throbbing, I guess that's to be expected. I am taking hydrocodone every four hours for pain control at ...Read more
Hi everybody,
Omg, yes it's 3:52 am and I woke up to throbbing, I guess that's to be expected. I am taking hydrocodone every four hours for pain control at night. The daytime pain is certainly there still but for some reason it's not quite as grueling. I would imagine 9 days out is too soon to expect painkillers to no longer be necessary. My cardio doc gave me tramadol 2x a day and the hydro one for breakthrough pain. That sounds like a lot to me, I sure don't want to become addicted to these drugs!
Another question is is it better to use heat or cold? My heating pad feels more soothing but it really worries me that maybe I am encouraging inflammation! I sure don't want to do that!
Thirdly, sleeping positions? Should I go out and buy a recliner? I just can't get comfortable!
Thank you and I hope the people behind me are coming along and feeling better on a daily basis....
Corey Sines You can try pillows and such to prop you up in your bed or a daybed if you have one. Sleeping reclin ... Read more
Corey Sines You can try pillows and such to prop you up in your bed or a daybed if you have one. Sleeping reclined is a must for many of after OHS. I used a recliner like many others, but others have made other things work. Each persons different from a pain and tolerance perspective, so there isn't any right or wrong in terms of medication. I would suggest however, that the pain should be improving some overall over time, and ifs its getting progressively worse, or not improving, you need to seek medical attention. Keep pushing through it and do your breathing spirometer and walking each day even if its somewhat uncomfortable, it will aid in your recovery. Ice as much as you can stand inflammation is your biggest enemy as long as you can take the cold (eating ice chips can also help some still).
Rita Savelis It's still very early. Do not worry about addiction at this point. Take what you need. Be vocal about ... Read more
Rita Savelis It's still very early. Do not worry about addiction at this point. Take what you need. Be vocal about your pain with doctors.
Sleeping is hard for most everyone at post-op, recliner or not. (I never had one).
It's hard to get comfortable so you have to sleep in small increments. I didn't sleep well for a long time. Doctors encouraged me to take sleep meds because sleep is vital. I really couldn't sleep without them.... And normally I wouldn't take meds. Gosh, I hated sleeping on my back for so long.
I was only sleeping a hour at a time the last 3 wks only the last couple of days am I getting 4 or 5 ... Read more
I was only sleeping a hour at a time the last 3 wks only the last couple of days am I getting 4 or 5 hours straight. It takes time. I tried to lay on my side for the 1st time last night. My incision under my pec said naaaa you can't do that so I went to the back again.
Kevin Lee I slept in the recliner both at the hospital and currently at home. You could try to rent one and se ... Read more
Kevin Lee I slept in the recliner both at the hospital and currently at home. You could try to rent one and see if it helps.
Rita Savelis One thing I gained from OHS (a year later) is the ability to sleep on my back - no problem. What a fe ... Read more
Rita Savelis One thing I gained from OHS (a year later) is the ability to sleep on my back - no problem. What a feat! I also remember asking when I could sleep on my side and being told "whenever you want to".... but it took awhile to feel comfortable and "safe" there....
Ouch!!!! I am really in pain! I was on OxyContin for about 4 doses after my surgery, and then I started a double vision thing with my eyes so my doc switched ...Read more
Ouch!!!! I am really in pain! I was on OxyContin for about 4 doses after my surgery, and then I started a double vision thing with my eyes so my doc switched me to Tylenol!!! It's not working and at 2:13 am I am in extreme pain!!! Any suggestions? I want to cry and I don't know who to call as I am out of town in Cleveland. This is torture!
Barbara Laurie Lise!! So sorry! Look on your discharge paperwork,there s/b an after hours doctor to call. But reall ... Read more
Barbara Laurie Lise!! So sorry! Look on your discharge paperwork,there s/b an after hours doctor to call. But really, go to the ER with your paperwork... They hopefully will take you seriously, and get you out of pain. Oxy to Tylenol?? Way too big a jump. 💞
Juergen Li Lisle - I went on my second day after surgery from Oxycontin to Tylenol. I started out with the maxim ... Read more
Juergen Li Lisle - I went on my second day after surgery from Oxycontin to Tylenol. I started out with the maximum daily dose (4000mg) and was given every 6 hours 1000mg. Tylenol is actually quite effective. I am sorry that you have this pain and hope you will make it through this night.
Amy Dorsey I am so sorry!!! I spent a torturous night like that in the hospital too. They should be offering yo ... Read more
Amy Dorsey I am so sorry!!! I spent a torturous night like that in the hospital too. They should be offering you something else. They gave me Tramadol which didn't help as much as Oxy, but it worked a heck of a lot better than Tylenol. I know you're discharged, you need to call the number they gave you for the 24 hour nurses and let them know, and they will make sure the nurse practitioner handles this for you. Make sure you tell them at your discharge appointment as well so they can refill your prescriptions Before you fly home. Side note... I actually went to the emergency room for extreme pain once I was discharged… You might have to do that if it's that bad.
Amy Dorsey I agree with Barb!!! Way too big of a jump and get to emergency room for help.
Steven Dean You should be able to call the nurse line at CC. I have an in between pain killer that I didn't reall ... Read more
Steven Dean You should be able to call the nurse line at CC. I have an in between pain killer that I didn't really end up using. It's called Tramadol
Robert Osmachenko Tylenol didn't work for me in the hospital but the ibuprofen group of drugs did fine. I also use ibu ... Read more
Robert Osmachenko Tylenol didn't work for me in the hospital but the ibuprofen group of drugs did fine. I also use ibuprofen in daily life.
About six weeks out I experienced deep tissue healing in my chest and back. My doctor gave me Indo-methacin 25 mg. Worked like a charm. Good luck, heart sister!
Well I finally met with Doctor Gillinov today. I was dissapointed to hear that he may have to do a sternotomy! Apparently because of the fact that I had radiation ...Read more
Well I finally met with Doctor Gillinov today. I was dissapointed to hear that he may have to do a sternotomy! Apparently because of the fact that I had radiation therapy for breast cancer twelve years ago there in fact could be scar tissue around my heart which would prevent a good result with robotic. He will start with the robotic and if he needs to he will have to go to the sternatomy, sigh. The other concern is because of the radiation the bones in my chest won't heal as well as had it not been radiated. I am so uneasy now I just can't even think. We had to wait an extra 4 1/2 hours to see him so by the time I saw him I was fried and now I am doubly fried......I trust him I just hope he doesn't have to do the sternatomy,
Thank you everybody for being there, Lise.
Amy Dorsey All I can say is remember you have the top surgeon in the world for this type of procedure so trust t ... Read more
Amy Dorsey All I can say is remember you have the top surgeon in the world for this type of procedure so trust that whatever he says and does is going to be the best for your specific situation. I know how you feel!! Hang in there. Praying for you. 💗💗💗
Listen to Amy :-)
PJ Fugitt Yes Amy is absolutely right! God Bless you Lise. You are in the best of hands!!!!!!!!! Above and at t ... Read more
PJ Fugitt Yes Amy is absolutely right! God Bless you Lise. You are in the best of hands!!!!!!!!! Above and at the Clinic.
Barbara Wood Hi Lise, I am new to this site & saw your post. I also have been diagnosed with severe mitral regurgi ... Read more
Barbara Wood Hi Lise, I am new to this site & saw your post. I also have been diagnosed with severe mitral regurgitation & also have had 7 weeks of radiation for breast cancer( 6 years ago) on the left side. I had read of the bone healing concerns, it's worrying... I'm wishing you all the best!
Wanda Mroz Trust the surgeons advice and you won't go wrong
Robert Osmachenko That is a really interesting bit of information about healing and radiation.
If one has had radiati ... Read more
Robert Osmachenko That is a really interesting bit of information about healing and radiation.
If one has had radiation then healing is compromised in the bones. Hmmm.
If healing is compromised in the bones then is healing compromised in the soft tissue as well?
What has radiation done to the bones that makes them less than optimal and will this be a permanent condition?
Peace be with you. Hope you find the solution that will work for you.
Richard Puckett At least you have a chance of robotic surgery. I had hoped that I did, but I had to have a traditiona ... Read more
Richard Puckett At least you have a chance of robotic surgery. I had hoped that I did, but I had to have a traditional sternotomey because of a LAD artery bypass graph. I did have a traditional sternotomey, and it wasn't that bad. My feelings were that I would rather have a couple or three more weeks of recovery to get a good outcome. Trust Dr. Gillinov.
David C Lise, are you worried about mortality or discomfort?
As far as discomfort, I am 5 weeks out from OHS ... Read more
David C Lise, are you worried about mortality or discomfort?
As far as discomfort, I am 5 weeks out from OHS to help with my aorta/valve/aortic root. Honestly, the sternotomy is conceptually terrifying, but the reality is totally different. The team at the CC are pros and know what they are doing. I am amazed at how fast we can recover and how limited my discomfort has been. Really, it's been more about listening to my body and resting when I'm tired. I was exhausted when I got off the flight home to Portland, but never any discomfort. I am also a little impatient, so the last four weeks riding in the back with my wife driving has been a challenge too. Kinda minor, right?
If it you are having legit fear of OHS, first of all that is totally natural. I was literally dry heaving on my walk to the hospital the morning of my surgery. The thing is, you are in the best place possible, with one of the very best surgeons who can provide the care you need. On a purely statistical level, CC has a less than 1% mortality rate, and they take on incredibly hard cases that others won't attempt. You are in fantastic hands. I seriously cannot stress how positive an experience I had there. You will come through this regardless of what path the surgeon has to take.
Michael Meyer Lise:
My experience with Dr. G is he is going to do the safest surgery with the best outcome for you ... Read more
Michael Meyer Lise:
My experience with Dr. G is he is going to do the safest surgery with the best outcome for you as a patient. The robotic surgery is just a technique for repairing your heart, maybe try to focus on the best outcome.
Hello everybody,
Well here I am in Cleveland and I've been very busy since I have been here, we arrived on Thursday. All day Friday pre op testing, I imagine ...Read more
Hello everybody,
Well here I am in Cleveland and I've been very busy since I have been here, we arrived on Thursday. All day Friday pre op testing, I imagine at this point I glow in the dark I've had so much radiation over the years....oh well can't do anything about that, so that's another "Let go and let God" issue.
So this weekend we went to the fabulous Art Museum and Cafe, and today we went to a street festival in Little Italy. After that we hopped on a train-bus route to Whole Foods market because we were starting to feel like we needed some real food. We then called an Uber to avoid our return ride on the bus- train and what a nice guy we got! He was fabulous! He took us back to the hotel and after we were charged he asked us if we would like him to take us on a short sightseeing trip through downtown, his treat. I was delighted and immediately said yes and what a treat it was! Downtown Cleveland is fabulous! When he dropped us off at the hotel we insisted on giving him a tip of course but the people here are just so nice, I was really grateful!
Now back to the issue at hand, gulp, tomorrow morning I go in for more pre op something or other and then finally at noon I get to meet the man who is going to fix my heart. Seems a bit bizarre doesn't it, I meet him one day and the next he holds my life in his hands???
I guess they are checking me in tomorrow, surgery is on Tuesday. Thank you so much for everyone's support, I love this site and thank you Adam for creating it, such a blessing! I may check in tomorrow,
XO everybody, Lise
You will do splendid we will all be praying for you.
Amy Dorsey You are there and I'm back in VA!!!!! I'm so sorry we didn't get to meet. I really wanted to be there ... Read more
Amy Dorsey You are there and I'm back in VA!!!!! I'm so sorry we didn't get to meet. I really wanted to be there for you. Sounds like everything is going well and you are right everybody is so nice in Cleveland and Ohio in general Looking forward to hearing how your meeting goes with Dr. G. Keep us posted. 💗💗💗
Lise Bowles You can count on it! You are my new bff's!!!
Lise Bowles Amy, just as a girlie aside, did you find the water here did something very unusual "electrifying" to ... Read more
Lise Bowles Amy, just as a girlie aside, did you find the water here did something very unusual "electrifying" to your hair! Lol, (some things are more important than others) my hair is normally straight and rather silly and since I've been here it's been like a friz bomb!!! Yuck!
PJ Fugitt Lise- Good Monday Morning! You are on your way!! My prayers are with you. You are in great hands with ... Read more
PJ Fugitt Lise- Good Monday Morning! You are on your way!! My prayers are with you. You are in great hands with Dr. Gillinov and all his talented team. Blessings be with you tomorrow and on your road of recovery.
Bridget Sawmiller Welcome to Cleveland, I was there last week and I got to spend time with PJ, sorry we missed you by a ... Read more
Bridget Sawmiller Welcome to Cleveland, I was there last week and I got to spend time with PJ, sorry we missed you by a day. You will do great tomorrow, I can't say enough great things about the Cleveland Clinic and the care I received. I look forward to reading your post op posts! Prayers for a successful surgery and speedy recovery!
Amy Dorsey Haha Lise! I didn't notice. My hair has always been straight..except when I hit mid 30's it started g ... Read more
Amy Dorsey Haha Lise! I didn't notice. My hair has always been straight..except when I hit mid 30's it started getting wavy and curly. No clue!! Could be hormones and stress.
Hi everybody!
I have to fly two different legs to get to Ohio from where I am. I am feeling a bit vulnerable to people coughing and hacking away on the plane? ...Read more
Hi everybody!
I have to fly two different legs to get to Ohio from where I am. I am feeling a bit vulnerable to people coughing and hacking away on the plane? Has anyone else felt this way and is it overreacting do you think to wear one of those paper masks? I have seen people wearing them and never paid much attention, but now I might understand the reason! Feedback please?
Cathleen Weed You're flying at a good time of year as far as flu season goes. Pretty low odds of catching anything. ... Read more
Cathleen Weed You're flying at a good time of year as far as flu season goes. Pretty low odds of catching anything. If a mask gives you peace of mind though then do whatever makes you feel protected and confident. Drink lots and lots of fluids for hydration 💛. Good luck with your surgery! Prayers for a speedy recovery! xo
Amy Dorsey I bought some of those masks because I'm staying at my dads house and he just happened to have planne ... Read more
Amy Dorsey I bought some of those masks because I'm staying at my dads house and he just happened to have planned a full kitchen remodel lasting eight weeks! There's contractors in the house every day and dust and saws and hammers going on! The mask helps me! I think if I had flown I would have worn one as well just to be safe.
David C I also had two legs to get home. I flew three weeks ago today, actually. One thing I did was upgrade ... Read more
David C I also had two legs to get home. I flew three weeks ago today, actually. One thing I did was upgrade to 1st class [400 hundred dollars well spent, imho] and carried a small bottle of hand cleaner and some wipes. I agree with Cathleen, if it brings you peace of mind, do it. If you are at CC, ask the travel concierge to help you out. They are amazing. They get the airlines/airports all set up for you, have wheel chairs waiting, and move you through the airports. It's a nice perk.
Barbara Laurie I would wear a mask, BUT my secret is to use a ready made wipe that has bleach (I've found at Wal-Ma ... Read more
Barbara Laurie I would wear a mask, BUT my secret is to use a ready made wipe that has bleach (I've found at Wal-Mart and CVS) when I get in my seat, I quickly wipe down every surface, even seat buckle and armrests. The odor dissipates quickly and I just drop the used wipes in a ziplock. If someone's in the seat next I nicely explain how I hate germs blah blah, I've never gotten protests and I, who always got sick after a plane trip ruining all my vacations, this has done the trick. It was our doctors suggestion😄
Sorry this got long!!! Best Regards❤️
Lise Bowles Thank you everybody, I am going to do both!
Best wishes for your surgery. My wife was a fanatic about using hand sanitizer and we were very sensitive about being around anyone ill as you need to be healthy before the surgery. I agree with the use of bleach wipes in the hotel and be sure to slather your hands with sanitizer. I would not worry about what people would think about wearing a mask either.
You and your husband are spending a lot of time and money to make the trip and you have to be healthy for Dr. G to operate. Take care of yourself and hope to hear of good results.
Thank you all so much for all the tips! I have lots and lots of pillows and a very comfy chair and a half with an ottoman in my bedroom, so that's what I am ...Read more
Thank you all so much for all the tips! I have lots and lots of pillows and a very comfy chair and a half with an ottoman in my bedroom, so that's what I am going to use and my husband is retired so he will be here to help me up and down if I need it!
Hi everybody,
I was wondering do most people absolutely need a recliner? I would prefer not to rent/ buy one but if it's absolutely necessary I will spring ...Read more
Hi everybody,
I was wondering do most people absolutely need a recliner? I would prefer not to rent/ buy one but if it's absolutely necessary I will spring for one! I am hoping to have the robotic or minimally invasive surgery but not entirely sure. If I do have either one of those cant I just sleep in my bed? Also do I need to have a heart pillow? Doesn't CC give you one?
Help! Lise
Sophia Ridley Lying flat post OHS surgery will be tricky. I used a bed wedge with 2 feather pillows at the top half ... Read more
Sophia Ridley Lying flat post OHS surgery will be tricky. I used a bed wedge with 2 feather pillows at the top half and one at the bottom for months as my shoulders hurt if I slept flat.
Clare Auten I did not get a heart pillow but was given folded blankets (at the hospital ) to hug when I coughed. ... Read more
Clare Auten I did not get a heart pillow but was given folded blankets (at the hospital ) to hug when I coughed. At home I used a small stuffed animal pillow that belonged to my kids. I already had an old lazy boy from the 1990's. It did not have the chair lift feature and has a lever on the side that you manually pull. It worked for me with some help pulling the lever early on. I had a full sternotomy. I was always more comfortable in the chair....even in the hospital I slept in the chair many nights.
Amy Dorsey I could not lay flat without excruciating pain! I don't think you absolutely need a recliner, but you ... Read more
Amy Dorsey I could not lay flat without excruciating pain! I don't think you absolutely need a recliner, but you will definitely need pillows or a wedge or something at least for a few weeks.
Denise Campbell I was able to lay in bed with two or three pillows under my head. I keep my heart pillow on my che ... Read more
Denise Campbell I was able to lay in bed with two or three pillows under my head. I keep my heart pillow on my chest because I was afraid the cat would jump up
Amy Dorsey ...I had to request the heart pillow. They gave me one only when I requested it. When I went to visit ... Read more
Amy Dorsey ...I had to request the heart pillow. They gave me one only when I requested it. When I went to visit PJ, she did not have one either.
David C I'm a month out, and I still don't like laying, or sleeping flat. You don't need a recliner, but I ... Read more
David C I'm a month out, and I still don't like laying, or sleeping flat. You don't need a recliner, but I do think you'll want some kind of comfortable chair. I spend a lot of time in a lounge chair. CC gave me a heart pillow the last day I was there. I think it's more an exit gift.
Rita Savelis You don't need a special heart pillow. It's absolutely not necessary. I'm sure you own a pillow or tw ... Read more
Rita Savelis You don't need a special heart pillow. It's absolutely not necessary. I'm sure you own a pillow or two and they will do fine. Any pillow or any blanket. You don't need a recliner but you may find it hard to lie completely flat for awhile so you may need some pillows to prop yourself up in bed. No matter what type of surgery you have, you may find sleep a bit difficult for several weeks. Take care.
If I had to do it again I would have bought a recliner. They are so ugly but when your in one you don ... Read more
If I had to do it again I would have bought a recliner. They are so ugly but when your in one you don't see it. If you can afford it buy it and donate it later. It took me 4-5 months before I could lay flat without lower back pain.
Steven A Husted no you do not need a recliner but if you can afford one i would recomend one they are very comfortabl ... Read more
Steven A Husted no you do not need a recliner but if you can afford one i would recomend one they are very comfortable after surgery they help you get in and out of a sitting position just press a button and it lifts you up to a standing position and push a button and it will put you in a sleeping position i purchased a used one before my surgery and i still use it today at 2 years out but like others on the site you can also use pillows or a wedge i love my electric recliner i sleep in it all the time best wishes and prayers for your surgery and recovery
Priscila Marino I got a eletric recliner at my local Salvation Army store. It was a very decent price. I am having it ... Read more
Priscila Marino I got a eletric recliner at my local Salvation Army store. It was a very decent price. I am having it professionaly washed next week before my surgery. I have heard is the best place to sleep after OHS and I am so freaked out I would have paid double !!!
Jackie Owens I recovered at my Dad's house and I was very lucky he already had one. However, I only needed it for ... Read more
Jackie Owens I recovered at my Dad's house and I was very lucky he already had one. However, I only needed it for about 7 days after surgery. I then graduated to a bed and stacked my pillows up in order to support my head/back. If you can find one, get one...from a friend to borrow, etc....it really is helpful. Good luck.
Sophia Ridley Lisa - although we've been chatting about sleeping, I do recommend a shower chair. I would feel rathe ... Read more
Sophia Ridley Lisa - although we've been chatting about sleeping, I do recommend a shower chair. I would feel rather dizzy especially due to the heat and sitting down helped. The one I've got is a travel one so folds away when removed.
Patti Talbot I was committed to not sleeping in a recliner. We do have one from pre-surgery and I didn't find it a ... Read more
Patti Talbot I was committed to not sleeping in a recliner. We do have one from pre-surgery and I didn't find it all that comfortable to sit in. Opening and closing the leg thing was impossible. Sleeping is tough no matter where you are I think. I finally switched to Tylenol PM and got some good sleep. And then - when everything passes and you sleep normally - there is nothing better. I still don't take that for granted at 4 months out!
Diane Zeigler I had my surgery at CC on June28th. Aortic valve replaced and two bypasses. I was extremely pleased w ... Read more
Diane Zeigler I had my surgery at CC on June28th. Aortic valve replaced and two bypasses. I was extremely pleased with my care. I don't have a single complaint. I never had pain to speak of. I just didn't like being tethered to all the tubes, drains and IVs,especially when I had to go to the bathroom. The heparin shots were not too much fun either.
When we left the hospital, we stayed at Intercontinental Suites and on the 8th floor because those rooms have recliners. I slept in the recliner every night. We did buy a recliner for our home and it has been wonderful. I am sure I could have gotten by without it, but it sure has made recovery easier. I got it from Relax the Back store and all you do is push a button to get in the position you want. The other helper that we bought is a Toto Washlet Toilet Seat. It just made life a little easier.
I wish you luck Lise, and if I can be of any help at all, please let me know.
I bought one for post surgery and slept in it for about 5 weeks before returning elevated to a bed. T ... Read more
I bought one for post surgery and slept in it for about 5 weeks before returning elevated to a bed. The times early after surgery that I tried to sleep in a bed, I kept sliding down and couldn't get myself back up easily. I purchased a recliner with a power mechanism to recline and it didn't put too much pressure on my chest (like a manual could). Recliner is now my chair and my family knows that they don't sit in it...haha! It was worth the investment for me. Good luck!
David C Thinking about this, I want to amend my post as I was a little passive in how I worded it. Other than ... Read more
David C Thinking about this, I want to amend my post as I was a little passive in how I worded it. Other than when I am walking or sitting in a more vertical chair to play guitar, I am living in my lounge chair. I actually bought mine when I found out I needed to have surgery. It was more of a reactionary purchase as I'd wanted this thing for ever and never wanted to spend the money. I was angry enough about having to have this surgery I think I had a mini-mid-life-crisis. I didn't buy a red sports car, I bought a fancy lounger, but I haven't regretted it for a minute. I am actually not sure what I'd do with out it. I would say find something that will work for you to be comfortable in for weeks of recovery time.
Rita Savelis Mini-mid-life crisis is right David! I feel you on that!
It's okay to buy a recliner, it's okay to b ... Read more
Rita Savelis Mini-mid-life crisis is right David! I feel you on that!
It's okay to buy a recliner, it's okay to buy whatever will get you through!
(I remember years ago when I was having lots of problems getting pregnant, seeing doctors, etc. I bought a jacket in L.A. that was WAY too expensive. I called it my "infertility jacket" for a long time....
Paul Wells I did not use a recliner. To get out of bed I would scoot to the edge of the bed. Laying on my side, ... Read more
Paul Wells I did not use a recliner. To get out of bed I would scoot to the edge of the bed. Laying on my side, facing out of bed.then I would drop my legs over the side and push myself up with one or both arm to a siting position.
Try this before surgery
Lise Bowles Me too! Actually, I already did Ashley, none of them got perfect reviews, but they never do! I opted ... Read more
Lise Bowles Me too! Actually, I already did Ashley, none of them got perfect reviews, but they never do! I opted for the one attached to the Cleveland Clinic, who knows?
Ashley Molyneaux I think that's what I would do as well - good choice! :)
Bridget Sawmiller We stayed at the Intercontinental suites in May when we went down for our consult, staying there agai ... Read more
Bridget Sawmiller We stayed at the Intercontinental suites in May when we went down for our consult, staying there again next 2 weeks for my surgery, it is nice to have the living room area and the kitchenette for the family. We had no issues with it and it is a short 2 block walk, I would recommend it!
In answer to your question, I had robotic surgery. I stayed at the Intercontinental Suites the night before surgery, it is expensive, but clean, quiet and convenient. I spent the weekend recovering with my family before driving home. Makes it a lot easier on your caregiver(s).
Phyllis Petersen We're booked into the new Holiday Inn on the campus. Hopefully, it's nice. I'll only get to enjoy the ... Read more
Phyllis Petersen We're booked into the new Holiday Inn on the campus. Hopefully, it's nice. I'll only get to enjoy the breakfast buffet one day, but my sister should enjoy.
Hello Everybody,
I actually got a call today from Cleveland Clinic! I can take a date mid August or late September, and I have to let them know by tomorrow ...Read more
Hello Everybody,
I actually got a call today from Cleveland Clinic! I can take a date mid August or late September, and I have to let them know by tomorrow morning, I am leaning toward mid August.
I had a strange experience today when i spoke to the nurse who called. I was basically asking for some reassurance. I said which is better, robotic or minimally invasive? (I was approved for robotic and am delighted but for some reason that popped out of my mouth) As I said, I was waiting for her to delightfully respond, "oh of course, robotic!" Instead she said, "I prefer minimally invasive myself", I was a bit taken back, and of course a cold chill ran down my spine, like OH NO!
Anyway when I asked her why she said that she would rather have one incision of 4 inches than 3 or 4, of smaller incisions. Then she added that it was a personal preference.
This was not my docs regular nurse because she is out this week, and I suppose I shouldn't have asked the question if I didn't want her opinion, but, it made me catch my breath. Has anyone out there in Heart Valve land had robotic MV repair that can tell me about it? Any feedback will be appreciated.
Petey Bello Lisa, I had a mini-thoracotomy. My doctor has done the robotic & had been known for robotic. But when ... Read more
Petey Bello Lisa, I had a mini-thoracotomy. My doctor has done the robotic & had been known for robotic. But when I asked him if I could get robotic, he said he doesn't do it anymore because he feels he is 'faster with his own hands when doing the surgery so therefore you are out of surgery quicker'. I really do not know if robotic is a slower operation but it definitely has a 'smaller incision site' & quicker recovery. In the end I would not have been a candidate for robotic because I had a very difficult repair (even my incision had to be bigger). I would ask your own surgeon or his own nurse your question or concern. Some of the doctors will only do a 'sternotomy' because that is what they believe or they haven't learned the 'robotic surgery'.
Good luck!
Wanda Mroz I had the choice of a minimally invasive repair, which requires two incisions and takes longer, and a ... Read more
Wanda Mroz I had the choice of a minimally invasive repair, which requires two incisions and takes longer, and actually has a very slight greater risk of stroke, or, regular sternotomy which is quicker, takes only one incision and has a lower risk of stroke. I grappled with the choice for several weeks and met my surgeon twice before making a decision. I spoke to my regular Dr, and the surgeon. My surgeon explained that if he ran into difficulty, he may need to do a sternotomy and when I asked what he would do if it were him or a member of his family, he told me he'd do the sternotomy because he wouldn't want multiple incisions or the slight risk of a stroke... And as it turned out, my repair was more difficult and took longer anyway. Had I chosen minimal, it would have taken far longer. So my personal preference was to have a sternotomy based on all of this info. Robotic was not something my surgeon was versed in, but he is expert in mitral valve repairs ... Especially when both leaflets are involved. Follow what your gut tells you. My gut just kept saying do it the regular way.... So I listened to it and it was spot on. It's a personal choice and something you have to decide. It was also explained to me that the work on the heart is the same invasion and the heart still has to heal about the same no matter which incision or approach is used. So just weigh the pros and cons, listen to that inner voice, and do what you feel is right for you. When it comes time to make that choice, you will know which is right for you. I too was conflicted but have not regretted my choice at all. Best wishes for the right decision, a smooth surgery and recovery. 💞
Amy Dorsey I have done a lot of research on all the minimally invasive techniques and everything says that robot ... Read more
Amy Dorsey I have done a lot of research on all the minimally invasive techniques and everything says that robotic surgery when done by someone who can do it well, is much easier for the surgeon to make proper repairs. I think it's all about the surgeons experience and Dr. Gillinov is tops in robotic surgery. When I talked to his nurse, I asked her and she said that is definitely the way you want to go if you are applicable for it based on the precision of the machine vs human hands, and also all of the other pluses as far as recovery time and less pain. I was certain I was going to have to have a more invasive procedure so I did not initially research the robotic option. I thought why would I want a machine doing the work...what if there's a malfunction LOL!? However, the numerous videos I have seen it's actually quite amazing, and I have no doubts about the skill level of Dr. Gillinov. The nurse did tell me there was no guarantee that he wouldn't possibly have to do the sternum incision after starting the robotic procedure if for some reason the repair wasn't working well that way...so they have the option in one single operating room to do both procedures if that were to happen. Again, I really think it's about the doctors skill level with robotic vs traditional, and of course your comfort level. You can guarantee I will let you know when I go through it in a few weeks! Also, check out the heart center on the Cleveland Clinic website. I took a virtual tour today… It's a beautiful facility!
Amy Dorsey Oh....and she said the reason why they prefer a robotic typically is because it's a very straightforw ... Read more
Amy Dorsey Oh....and she said the reason why they prefer a robotic typically is because it's a very straightforward procedure when you only have one valve that needs repaired and nothing more complicated. It's the least intrusive for the patient :-)
Amy Dorsey ...the nurse emphatically told me I want the robotic procedure! She will probably tell you the same s ... Read more
Amy Dorsey ...the nurse emphatically told me I want the robotic procedure! She will probably tell you the same since you are approved.
Peggy Whitecotton My surgeon does the robotic surgery in fact he was the first surgeon to do that type of surgery in th ... Read more
Peggy Whitecotton My surgeon does the robotic surgery in fact he was the first surgeon to do that type of surgery in the state of Missouri. But I was not a Candidate
I had a minimally invasive mitral valve robotic repair completed by Dr. Gillinov at the Cleveland Clinic on July 14, 2014. I would highly recommend the procedure. You will have more incisions but they are much smaller. I was confirmed as a candidate, but I was also marked for an ministernotomy. I did not know which surgery I had until I was in ICU. This was clearly discussed with me by Dr. Gillinov. He will use the safest approach, cosmetics is a triviality.
There are offsetting risks for both procedures the cannulation is more complicated for the robotic procedures. But you will likely recover more quickly (no sternum fusing and waiting a month to be able to drive), less blood loss. There is a slightly higher increase of stroke and potentially longer surgical time. I found there was more pain than expected as they entered under my arm and had to cut through muscle. You may want to ask if this is typical or if they have different entry points for women, sometimes under the breast. The pain meds take care of the pain. You will probably sleep much differently (on your side) with lots of pillows than those recovering from a median sternotomy. I do not Dr. Gillinov typically performs median sternotomies especially for mitral valve repair. There are some other ladies that have had the procedure, let me see if I can find them.
Michael Meyer Speak with Jacqueline Cook about her experience. She had a mitral valve repair at CC in late 2015. ... Read more
Michael Meyer Speak with Jacqueline Cook about her experience. She had a mitral valve repair at CC in late 2015. She can share a ladie's experience. She also thoroughly analyzed this option.
Mary K I had a mini sternotomy, four inch incision, with two large chest tubes for drainage under my right b ... Read more
Mary K I had a mini sternotomy, four inch incision, with two large chest tubes for drainage under my right breast. I just celebrated my one year valve birthday last week. The surgery was a success. Complications included infection in one tube site. fluid in my right lung for months, and persistent right lower intercostal (rib) pain that is still present. I would have robotic in a flash if it were offered to me, and the surgeon were experienced.
Lise Bowles The bad news is I had radiation for Breast Cancer to my left breast 12 years ago, I was not told then ... Read more
Lise Bowles The bad news is I had radiation for Breast Cancer to my left breast 12 years ago, I was not told then when I asked about the potential side effects of the radiation, but I have since learned that after radiation the bones in the chest will not heal. YUK!
Hi Everybody,
I am waiting to hear from Dr. Gullinovs office for a date. I am afraid it may take awhile, (to say the least) for me to get one. My cardiologist ...Read more
Hi Everybody,
I am waiting to hear from Dr. Gullinovs office for a date. I am afraid it may take awhile, (to say the least) for me to get one. My cardiologist at home was pleased I chose Cleveland Clinic and I told him the wait could be up to 3-4 months and he didnt seemed concerned, but now I am starting to wonder if the damage will get worse by waiting. I have severe mitral valve regurgitation and I am not symptomatic yet. I hope that waiting will not make the problem worse, and ultimately I am hoping for a repair, (of course) Feedback please.....
Lise Bowles Oh and PS. I was told by Dr. Gullinovs secretary that when he reviews my tests if he feels I need to ... Read more
Lise Bowles Oh and PS. I was told by Dr. Gullinovs secretary that when he reviews my tests if he feels I need to be treated sooner rather than later he will get me in in a cancellation or put me with one of his colleagues. Should I be concerned if I go with another one of Clevelands heart surgeons? Are they all good?
Elaine Cutri They are all top notch! Dr Roselli was my surgeon and he did a great job for me. It was my 4th OHS an ... Read more
Elaine Cutri They are all top notch! Dr Roselli was my surgeon and he did a great job for me. It was my 4th OHS and he had some complicated issues to deal with. There are several others that our heart buddies have raved about. I think you've made a good choice. The post-op team of doctors and nurses did a great job of taking care of me too. Good team work!
There's always exceptions, but I have a feeling that another 3 months of waiting shouldn't have a huge impact. More than likely, you heart has been leaking for a long time. I had severe regurgitation for over 2 years and my heart hasn't gotten worse. So don't worry. :)
Like Elaine said - if you have to go with another Dr. at Cleveland Clinic - you will still be in good hands. They're all excellent! and they work with each other!
Ashley
susan kotansky I wouldn't worry. If they feel you need to do something sooner, you should believe the secretary...th ... Read more
susan kotansky I wouldn't worry. If they feel you need to do something sooner, you should believe the secretary...they will. I was in a similar predicament in that I had moderate/severe regurgitation and no symptoms (or at least nothing different from what I experienced my whole life). I was told to come in every three months to evaluate the situation or if I experienced any new symptoms. In the end I decided to have the surgery asap but they were clear that waiting was a clear option. So three months is not that long. Trust in your doctor...these guys really know what they're doing!!!!
Lise Bowles Thank you, I just needed a bit of reassurance!
Amy Dorsey I am in the same boat! Waiting to hear back from his office. I have never planned a surgery so when ... Read more
Amy Dorsey I am in the same boat! Waiting to hear back from his office. I have never planned a surgery so when my Cardiologist told me I needed this done asap I alerted my work and family and started the process of getting this done. It's already been 3 months of further tests to mail off to the surgeons. I thought once I mailed my packet off it would be soon....now I am finding out it may be 3-4 more months. UGH. To top it off my insurance rolls over in Aug. and I just paid the deductible so that will start all over again before surgery. :/ I know I shouldn't be stressing about money with everything else I need to focus on but I support myself so the financial part is a burden. Especially with however long I will be out of work. I am finding myself dealing with another bump to get used to in this process. LOL....there have been soooo many and I haven't even been through the hardest part yet! I know everything will work out the way it is meant to. Who knew I would EVER wish heart surgery would hurry up and get here?!?!
PJ Fugitt Lise- hi- check out my journal posts. All my paperwork was overnighted on Feb. 24 to Cleveland.
Long ... Read more
PJ Fugitt Lise- hi- check out my journal posts. All my paperwork was overnighted on Feb. 24 to Cleveland.
Long wait times and lots of phone calls later finally got a date of July 28- could of had July 5 but did not want to be there during the holiday. Richard was behind me in sending paperwork and he has already had surgery. I think the wait sometimes plays on the mind and anxiety does occur. Got script for Xanax. It has calmed me down a little. Tough to say "be patience" but that is what it really comes down to. Being single is tough in really being my own advocate on all of this life stuff!!!! But one day, one moment, sometimes one second we somehow get through it.
I find that obviously I still have a whole lot of chores to do before getting my heart worked on! Hope you hear soon. Please keep me posted!
Lise Bowles PJ, wow! You submitted your paperwork Feb. 25 and you just got a date? That is a very long wait! I ag ... Read more
Lise Bowles PJ, wow! You submitted your paperwork Feb. 25 and you just got a date? That is a very long wait! I agree, one second at a time, its all so scary, but we will get through it! I just never expected this in my wildest dreams....
Does anybody know what wait time to see Dr. Gillinov is? Experiences please. I really want to go to him, not sure if I can wait as long as required! I have ...Read more
Does anybody know what wait time to see Dr. Gillinov is? Experiences please. I really want to go to him, not sure if I can wait as long as required! I have severe mitral regurgitation but no symptoms....
Richard Puckett Hi Lise, once Dr. Gillinov got my records, it took almost four weeks to hear back with his recommenda ... Read more
Richard Puckett Hi Lise, once Dr. Gillinov got my records, it took almost four weeks to hear back with his recommendations for my mitral valve repair. Dr. Gillinov had been out of town for a few days, which probably delayed things. I had requested that my records be reviewed by Dr. Gillinov. Anyway, he was booking out three months, but a few earlier dates were available. I got a date that was about a month and a half out. Hopefully, this helps some.
Lise Bowles Richard, how was your surgery and how are you doing? Did you get to actually meet him or did he make ... Read more
Lise Bowles Richard, how was your surgery and how are you doing? Did you get to actually meet him or did he make a cameo appearance? I've watched his u tube videos! Where did your family stay at the hotel in the Clinic?
Hi everybody,
I am having a terrible time with insomnia, due to anxiety about my heart being opened and this whole experience! Gulp,! You all sound so brave! ...Read more
Hi everybody,
I am having a terrible time with insomnia, due to anxiety about my heart being opened and this whole experience! Gulp,! You all sound so brave! Anyway which raises the question, have any of you been prescribed and taken anything for sleep leading up to the surgery? I have not quite made a decision on the surgeon because I don't know if I will be accepted for robotic yet, so I feel in limbo and that adds to my anxiety!
I have tried all sorts of natural cures like melatonin and homeopathic things but they just don't work, the anxiety is too strong! Please fill me in, I can't be the only person experiencing this!
Patti Talbot Hi Lise! Yes I was the same way. I finally called my GP and he gave me Zanax. Filled the prescription ... Read more
Patti Talbot Hi Lise! Yes I was the same way. I finally called my GP and he gave me Zanax. Filled the prescription and then got afraid to take it so I never did. For me, that month of waiting was awful. All I did was cool and freeze meals, and shop for more food than we could ever need. I'm told my first words after surgery were - I'm just so glad it's over! It's the truth. I moved as quick as I could once I got the news, at least the misery wasn't more prolonged. But honestly, I created a much worse scenario than the reality. It's not too bad, and you will be fine.
Dan Edle Try "over the counter" Melatonin that you can find in the Vitamin aisle... I take one every night... ... Read more
Dan Edle Try "over the counter" Melatonin that you can find in the Vitamin aisle... I take one every night... I had trouble with insomnia for years even before my surgery in early March... You will be Fine.
Lise Bowles Dan, I mentioned in the post that the melatonin just doesn't do it for me! My doc recommended zquil, ... Read more
Lise Bowles Dan, I mentioned in the post that the melatonin just doesn't do it for me! My doc recommended zquil, yuk I was a walking zombie the entire next day!
Denise Campbell I took Tylenol pm. With the OK of the doc. But not when I was taking pain pills. Be careful. ... Read more
Denise Campbell I took Tylenol pm. With the OK of the doc. But not when I was taking pain pills. Be careful. I found out that Lipitor can cause insomnia. So now I take it in the morn.
Denise Campbell Try slow breathing in thru nose out thru mouth. Also try to remember, you will get they this and ... Read more
Denise Campbell Try slow breathing in thru nose out thru mouth. Also try to remember, you will get they this and be brand new and then you can continue on. Surgery goes fast and recovery won't be near as bad as your imagination has thought up. I promise. I'm 7 weeks post op I'm great. Still tender in sternum and my stamina and energy is high but I'm getting ready to start cardiac rehab and that will help. You will do great. Once the decisions have been made in the type of valve or surgery don't second guess. Just trust the doctors. Of course this is if you like and trust him/her already. Keep us posted. God will have your back.
Cathleen Weed Do you have a surgery date yet? When my aortic aneurysm was discovered (and it was huge..6cm) I felt ... Read more
Cathleen Weed Do you have a surgery date yet? When my aortic aneurysm was discovered (and it was huge..6cm) I felt like I had a time bomb in my chest. They wanted to do emergency surgery 2 days later but it was my wedding anniversary so I said no way. We scheduled my surgery for 4 days out and he gave me exactly 3 valiums to take home lol. It totally worked though. You could ask for that short term. 😕 Sorry you are feeling this way. I call it the silent suffering. Hope you feel the positivity and support on this page. xo
Dan Edle Take Tylenol PM with melatonin ... my family Dr. told me all PM products are safe... this combo hel ... Read more
Dan Edle Take Tylenol PM with melatonin ... my family Dr. told me all PM products are safe... this combo helps me sleep
I can honestly say I have slept much better since having surgery. I am not a fan of meds, but they ma ... Read more
I can honestly say I have slept much better since having surgery. I am not a fan of meds, but they may help you. Make sure to stay off your phone and no television as the light wakes up your brain. Best wishes and hope you get rest before (and after) surgery.
Lise Bowles Thank you everybody! I am just so nervous about the whole thing!
Paul Skidmore I guess it is probably too late to make this comment / suggestion. When I was informed that I had to ... Read more
Paul Skidmore I guess it is probably too late to make this comment / suggestion. When I was informed that I had to have ByPass surgery I made it clear that I wanted no information on what they were going to do. To be honest, if they had explained the procedure beforehand I would not be here. I would have walked straight out of the hospital. OK so I am a chicken when it comes to needles and knowing what was involved would have been hell to deal with. The one thing that got me through it all was a doctor at the local hospital explaining that the procedure was as common as pulling teeth. Hundreds done per year at my hospital and very few failures. I have in the past jumped tandem out of an Aircraft at 10,000 feet. I was petrified about that too but told at that time to just enjoy the ride.
That's what the doctor said to me about the op and the only advice or comfort I can give. "Relax and go for the ride"
Lise Bowles Thank you Paul! I dont really want to know about the specifics of the surgery but I do want to choose ... Read more
Lise Bowles Thank you Paul! I dont really want to know about the specifics of the surgery but I do want to choose the best doc and hospital for me! You have me beat jumping at 10,000 feet! I think I would have to be pushed......
Hi everybody,
I am a member of a club I never expected to join!
I established myself with a new GP about 2 months ago. While listening to my heart, she ...Read more
Hi everybody,
I am a member of a club I never expected to join!
I established myself with a new GP about 2 months ago. While listening to my heart, she almost jumped in the air and said "you have a really loud heart murmur"! I had no idea. I had never been told that growing up. The first thing that popped in my head was that maybe it had something to do with the radiation I had received 12 years ago for breast cancer. Left breast, center of chest.
Well long story longer, I was sent for an ECHO, severe mitral valve regurgitation. I said, "But I have no symptoms" to the cardiologist they sent me to, and he informed me in no uncertain terms I would need surgery. I am in a small town in Florida and didn't wait to go see the local heart surgeon, and he confirmed the facts. He said he would like to repair the valve as a first choice, but if that wasn't possible, replace it. He said he was hoping that after a cardio cath it would confirm that no other heart disease was present and he could do minimally invasive surgery going in from my right side.
I was hesitant to stay and do it locally because it is a small practice and they dont do robotic surgery.
I had the cath and my arteries are clear so I have found a doc in Atlanta who apparently does many robotic surgeries at Emory. My info is being sent to him and I will hopefully know by the end of this week if I am approved for robotics.
What I am questioning is should I go to the big wigs at Cleveland? I am shocked having never expected this, I am very active, go to the gym, eat very well and dont drink or smoke. I am 61 years old and I am really fearful of all of the radiation from the procedure, Ive had lots of radiation from my breast cancer treatments and brain scans from an accident 20 years ago. Before the cath I asked the nurse if it was a-lot of radiation and she said that is was equivalent to stranding in the sun for 20 minutes.
I am reading parts of Heart 411 by Dr. Gillinov and he says its equivalent to 20 chest X-rays. OMG, I must glow in the dark!
Its too late for that but I am scared to death of the rads and surgery yet to come. Can someone please let me know positive outcomes on Mitral Valve surgery? I am trying to put on my big girl pants!
Denise Campbell I had successful mitral valve replacement. I have a mechanical valve. They couldn't repair mi ... Read more
Denise Campbell I had successful mitral valve replacement. I have a mechanical valve. They couldn't repair mine. I had regurge and stenosis. I am on Coumadin but I'm adjusting. My surgery went smooth. A couple of hiccups during recovery but otherwise I'm good. I'm at seven weeks post op and getting ready to start cardiac rehab. You'll do fine. Have faith.
Petey Bello Hi Lisa, it is normal to be scared. We all go through it. You are at the right website - 'Welcome'. T ... Read more
Petey Bello Hi Lisa, it is normal to be scared. We all go through it. You are at the right website - 'Welcome'. There are a lot of great people on here that can offer you lots of support & advice! I am 2 1/2 weeks post-op from a successful mitral valve repair. They told me mine would be difficult because both my leaflets were damaged, that is was not impossible but they wouldn't know until they were actually in there. My surgeon suggested a dr who specializes in difficult repairs. With that said, you always have to choose a 'valve' option before you go into surgery just incase they cannot do a repair. My surgeon said my repair was more difficult then he expected & that another surgeon would have just replaced it. So with that said, I am glad I made the trip to a 'specialist on repairs' ...Had I not, I would have a replacement. So If you feel you might be in the need of a 'specialist' because of your own situation, by all means do the research so you are comfortable with your choice. Picking a surgeon is a big decision for each & every one of us. There are many great surgeons & hospitals in our country. Just do your research, so you will be comfortable with your decision before you enter surgery.
Good luck! Prayers go with you as you travel through this important journey :)
Sophia Ridley I had severe regurgitation of the mitral valve, discovered last July after focused chest pain. Knew I ... Read more
Sophia Ridley I had severe regurgitation of the mitral valve, discovered last July after focused chest pain. Knew I had a murmur but told it would never cause a problem. I had mine repaired mid November, they included goretex strings too. I had post op AFib for a couple of weeks but reverted without cardio version.
Less than 6 months later and I'm feeling much stronger, dare I say stronger than before! Cardiac rehab is a must! I see my cardiologist in July and my biggest aim is that my atrium is back to normal. That's motivation to do more exercise than I've done in years!!!
You've joined a fabulous site, these wonderful people helped me every step.
It's not a walk in the park, but you can do this!
Lise Bowles Thank you, I had no symptoms, or so I thought? I had never before been told by anybody I had a heart ... Read more
Lise Bowles Thank you, I had no symptoms, or so I thought? I had never before been told by anybody I had a heart murmur! Maybe I do have symptoms, my energy level is down, I thought it was just because I I was getting older, and my bras seemed like they were strangling my rib cage, (sorry guys I know this is coed) but I have just chalked it up to gaining weight.....which I have done, but not terribly excessively. Given that my energy level is lower I figured it was my metabolism slowing down. And maybe all this is true but maybe it is part of the leakage that causes it! They said in the diagnosis that it is severe mitral valve regurgitation. I don't know about all the numbers you all are using but apparently it's really bad!
This is scary! The thought of having someone stop your heart to repair or replace a valve is horrifyi ... Read more
This is scary! The thought of having someone stop your heart to repair or replace a valve is horrifying!!! You are doing exactly what you should by reading up on it and finding support on this site. There are several Cleveland Clinic offices in FL. There are also lots of people here from FL who may be able to give you recommendations!! Best wishes!
Patti Talbot Successful repair here! It will be 6 weeks tomorrow! I had minimally invasive on my right side, but n ... Read more
Patti Talbot Successful repair here! It will be 6 weeks tomorrow! I had minimally invasive on my right side, but not robotic. Pain was very manageable and came home with just Tylenol for pain. By three weeks I was realizing I would be okay, by 4 I was feeling good, and now, at 6 I have times in each day when I already feel better than before surgery! It's so scary, I know, but it's necessary and you will be in skilled hands no matter who you choose. The worst part is the anticipation!
Lise Bowles I would imagine that's right Patti, the anticipation is giving me such anxiety I can't sleep or I wak ... Read more
Lise Bowles I would imagine that's right Patti, the anticipation is giving me such anxiety I can't sleep or I wake up in the middle of the night and can't fall back to sleep! Ugh! But thank you for the encouragement, I am excited by the prospect of having more energy! I still go to the gym but I have to force myself to do much of anything. And my visits there are becoming few and far between! I don't want to take anything to sleep but I am such a mess with sleeping it's doing me no good I am sure!
Jean Raber I am headed down the path for TMVR when it is more widely available in my HMO system, I hope, due to ... Read more
Jean Raber I am headed down the path for TMVR when it is more widely available in my HMO system, I hope, due to the fact that I have a rare blood cancer. OHS poses some added risks I don't want to take, but this site has a lot of good info to help you make decisions and to give you things to discuss with your doc. My MVP was diagnosed when I was 23 ... by a vet student. When I hit 60, it became moderate/severe. You might want to ask your doc how much improvement post op to expect, likelihood of developing a-fib, and how that would be managed. It's good to have realistic expectations.
Wanda Mroz Lise, you probably do have mild symptoms that you don't even realize. I had mitral valve repair in A ... Read more
Wanda Mroz Lise, you probably do have mild symptoms that you don't even realize. I had mitral valve repair in August 2015. My cardiologist sent me to a surgeon that was very skilled in repairs because I had both leaflets that needing fixing. I did have the option of minimally invasive, no robotic, but I chose OHS .... My gut told me go the regular way. The surgeon explained that the minimal required a groin incision for bypass machine and that it was still a lot of trauma either way so that's what I did. You have to weigh the pros and cons for you... What's right for you and trust your gut. As it turned out my repair was tricky... The surgeon did it and they restarted things but it was still leaking so he had to redo it... All during the same surgery. Then it worked! He did have a bovine valve just in case. I am doing well... Back to work and after I realize that I had lots of symptoms because now I know what normal feels like. It's scary, and by no means easy, but doable! You will be fine. If you have questions please don't hesitate to ask them. That's what we are all here for!
Rita Savelis Sadly, radiation for cancer can cause heart valve damage, which takes years to surface. Patients are ... Read more
Rita Savelis Sadly, radiation for cancer can cause heart valve damage, which takes years to surface. Patients are often asymptomatic when the damage is detected by doctors. I'm so sorry you have to go through with this. If your valve can be repaired rather than replaced that would be fabulous. Take Care.
Dan Edle A heart murmur was discovered several years ago with my Family Dr. I had an Echo and was diagnosed wi ... Read more
Dan Edle A heart murmur was discovered several years ago with my Family Dr. I had an Echo and was diagnosed with minor leakage of my mitral valve. For several years following this the diagnosis was the same until about 3 years ago. My minor leakage had migrated to the Severe state. I was then instructed to see a Cardiologist, and at that time I was told I may not have to have surgery until I developed symptoms such as shortness of breathe, etc. The Philosophy has now changed to go in and repair the mitral valve... sooner then later after a diagnosis of severe leakage. It was a tough decision to schedule surgery because I had No symptoms, and was still jogging the day before I had surgery. My surgeon explained to me that this condition would not fix itself, and that it would eventually get worse. So I decided to have surgery on 3/04/16 by Dr. Raymond Singer at Lehigh Valley Hospital in Allentown, PA. Dr. Singer was able to repair my mitral valve (perfectly he said). I did have a minor issue with AFib which after extended my stay by a day, and was finally released from the hospital 6 days after surgery (had open heart). Anyway... I was finally taken off of blood thinner 6 weeks after surgery, and told that I can resume full activity after the 8th week. I am on week nine post surgery... feeling "Pretty Good" and am back cutting my grass and doing other yard work. At this point , since I feel Pretty Good I am glad that I got the surgery before my condition worsened.
Jean Raber Dan, interesting story. My cardio told me that making the call about when to call for mitral valve su ... Read more
Jean Raber Dan, interesting story. My cardio told me that making the call about when to call for mitral valve surgery is the hardest part of his job. You delineate some of the many things the doc has to evaluate. The patient's general health and ability to withstand surgery is another consideration. And many asymptomatic patients feel "pretty good," as you do, post surgery. Doc told me that, if I was compliant, I could get back to 90 percent of where I was pre-op. Because surgery seems to be a ways off for me, I've tried to get in "fighting shape" during the lull, though this is getting harder.
Dan Edle Jean... at first my cardiologist told me that I may not have to have this surgery for 10 years... as ... Read more
Dan Edle Jean... at first my cardiologist told me that I may not have to have this surgery for 10 years... as long as I was feeling well we would just monitor it. After meeting with him annually for about 3 years I found an article on line from the Mayo Clinic stating a case now for going in sooner then later to repair a mitral valve with severe leakage. As I showed this to my cardiologist he shook hid head yes, and said that it was now time to tackle this issue... So ahead I went... and was told the procedure my surgeon did in early March had repaired my mitral "Perfectly"... So I only hope that it holds up long term... At 9 weeks post op I just started to try and jog his week... taking it slowly.. one lap walk... one lap "old man Jog" LOL... my wind still has a long way to go to get back to normal.
Following the surgery which was robotic I suffered ...Read more
Following the surgery which was robotic I suffered terribly for the first two years with periodic pericarditis. My heart doc at home finally figured out a combo of medicines that calmed it down, and as long as I stayed on them and didn’t exert myself to much physically during that time it went away after 3 weeks to a month.
Fast forward to Covid vaccine which I got at my cardio docs advice and boom there was the pericarditis again. I started the meds immediately and after a couple of weeks it subsided and then after the 2 nd it came right back. Same deal, did the meds and stayed quiet, my doc said no more vaccines for me because since the initial introduction of the vaccine it’s been discovered to trigger pericarditis. Ugh! I am having another incident now, not sure what triggered it, but it stinks! I am grateful that I have not had this problem for a long time, but I would love to speak with someone on this site who does.