Lise's Journal

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

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!

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

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?

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.......

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?

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

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!

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!

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

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

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

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.

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

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!

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....

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!

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.

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

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?

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 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

Feedback please on new Holiday Inn, Intercontinental or Intercontinental Suites?

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.

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.....

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....

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!

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!