Susan's Journal

Ana Brusso  Just read your story and I’m sorry you are going to have ohs again. The good thing is that you see the silver lining to have TAVR next time. Glad you changed hospital and surgeon. God bless you and keep us posted 🙏❤️

Rose Madura  Susan, I'm sorry to hear this. You must feel very frustrated. Good move on changing surgeon and hospital. Hopefully things will be better this time around. God bless you.

Pamela Gregory  I am also happy you changed surgeons and hospitals. We will all pray that they get it right this time!

Klara Čičić  I am so sorry Susan, sounds like a nightmare. But you are strong and you can do it! We are here for the support, please keep us posted!

Donna Casaletto  Hi Susan, I’m also from Boston. So sorry to hear what you’re going through but good for you being your own health advocate and doing what is best for you! Where are you having it done and who’s your surgeon? My OHS was on 2/23/23 Mass General with Dr. Langer …so far so good and loved him!  

Susan Robichau  Brigham with Dr Cunningham this time. Keeping my fingers crossed! He said that he does a lot of redos for other surgeons so hopefully is good. Thanks for the good wishes everyone

Annette Sterzel  I hope and pray your surgery went well this time around.  Thoughts and prayers are being sent your way! 

Robert Miller  Sorry to hear. I had OHS for mitral valve, 4 months later the bad news that I had to redo it. This time with a different doctor and hospital. Leaks again after another 4 months and my cardiologist ordered another visit in just a few months, i.e. not good signs. 

Do you know the defect before the 1st surgery, the defect before the second surgery and the defect before the upcoming 3rd surgery? Did you read the operative reports for the first two surgeries? Does the new surgeon have the past echos, operative reports, etc. (s)he might not care about the past issues/reports because they say they just care about the current issue. But I would think it's important to fully understand the history and what issues /complications the previous surgeon found. Also talk to at least a couple other surgeons besides your initial surgeon. You don't want to do this a 4th time. 

Valerie Herndon-Vitarella  Although my redo was over a year, he didn't give me any increased risks for death or stroke. The main thing they deal with is the scar tissue from the first surgery. I originally had robotic through incisions in my right side and there was a lot of scar tissue. Being in the hospital already, I'm sure it's hard not to be thinking about the surgery constantly. You are in my prayers for a successful surgery.

Civita Fahey  my prayers are with you Susan.. The Beth Israel is a great hospital and you are in good hands.. I have heard great things about Dr. Kabbaz.

Marie Myers  I am so sorry this is happening! Can only imagine your disappointment at having surgery again so soon after the first. Praying you stay strong to get through this new trial.

Susan Lynn  Susan - So sorry to hear that. You'll find the strength and determination to get through this second surgery and come through with flying colors! You'll feel so much better when your anemia is resolved. We'll be here cheering you on and awaiting your good news!

Rita Savelis  I'm so sorry that you have to go through this. After what you have been through already. It's unfair. But you will move forward as one does. May the next 3 months be easier ones. Take care.

Valerie Herndon-Vitarella  I am so sorry to hear this. I also had to have a re-op because 2 stitches pulled apart from the annuloplasty ring. Praying for you!

Susan Robichau  Thanks all. Helen, the main symptom was very dark brown/ black urine. Also felt significant fatigue but kept thinking that was just the metaprolol. It was a very low hemoglobin that was causing that symptom

Michael Eichhorn  Sorry that you have to face another surgery Susan. Sending prayers for a smooth procedure and recovery🙏🙏

Rose Madura  Oh Susan! I'm so sorry you have to have another surgery. It's a tough pill to swallow. Let's hope and pray this fixes things iince and for all so you can begin to feel better soon! Prayers coming your way. Try to stay strong.

Susan Lynn  Susan - I'm sorry to read your news, but your physicians will get to the bottom of it. Stay positive. Better days are ahead.

Michelle E  Susan I am so sorry to hear of your setback. Prayers for a good resolution to your continued heart issues.
Michelle

Susan Lynn  My EF went from 60 to 45 after my MV repair according to my 1 month echo. While I didn't have an irregular rhythm, my cardiologist put me on a low dose of metoprolol and the ace inhibitor, lisinipril. According to him, these two medications assist in heart remodeling and allow your heart to get accustomed to the increased forward flow of blood. I'm having another echo in 3 weeks - 6 months post op - and I hope my EF is back up. I also think cardiac rehab has helped. I'll keep you posted. Stay positive - your heart is healing.

Steve Farthing  Regardless of why the EF declined, 5 weeks post-op is still very soon after your procedure and your doc is working with you to heal from everything. My doc told me most people continue recovering/improving for 2-3 years after MV repair. So plenty of reason to be optimistic.

Bonnie Stone-Hope  Hello Susan,
So sorry to hear this news. Try to stay positive, it is still very early.

I met my cardiologist for the first time last week.
He told me that it takes a full year to totally recover from this surgery. (mitral valve repair 20 weeks ago today)
Told me that my post op ECHO showed moderate mitral valve regurgitation. States that it might resolve as time goes by since there is still a lot of inflammation internally due to the surgery.
He then stated quite nonchalantly, that they had done a repair, but could always do a replacement if the repair does not work!

I choose not to worry, cannot do a thing about it, and will wait and see.

Thinking of you and sending prayers.

Susan Lynn  I think that means your ejection fraction (the strength of the pumping of your heart) may be lower since your surgery. I have also been told it's common since the heart is not accustomed to the increased blood flow. I was prescribed a low dose of metoprolol and lisinpril to aid in the remodeling of my heart.

Susan Robichau  thanks, that makes sense. My EF pre op was 64%, the TEE post op says 55 - 60%. Still not too bad. I am also on metaprolol, hopefully all is OK.

Marie Myers  If they did the TEE within 10 minutes of finishing bypass, it is not unusual to see decreased function. Second, if your total circulating volume is still low, your output will be low till they "fill you back up". That is why many of us will loose several pounds of fluid over the first few days.

Susan Robichau  Thanks, having a stress echo on Friday so will see what this repaired heart can do. It was a little depressing to hear the suggestion that my heart function is worse than when I went in.

Barbara Wood  Hi Susan, that's a lot of metoprolol! I take 12.5 mg once a day & still have some of that zombie effect! Drinking lots of water & Gatorade helps me - metoprolol is very dehydrating.
I had a mitral repair too & have been on Coumadin, have also wondered about Eliquis. After being on both, I prefer Eliquis. I see my cardiologist next month & if he wants to continue me on blood thinners, I plan to ask about that.
Best wishes for a smooth recovery!

-

Gina Fiorentino  Hi Susan, I also felt like a zombie when I was on a higher dose of Metprolol after surgery. Felt much better when it was reduced by half. Now it is reduced by half again, and I'm feeling quite normal, albeit a little lightheaded at times and tendency toward dehydration. Also- I've had restless legs and weird sleep patterns since my surgery 6 weeks ago which may or may not be medication related (I usually sleep 2-3 hours, wake, fidgit, rest, sleep, forgot, read, sleep...), but I understand this is not uncommon- in case you experience something similar.
To answer your last question, my surgeon prescribed a single baby aspirin a day for my mitral valve repair. No coumadin.

Nancy Surprenant Takahashi  hi susan, i too went to afib a week after my surgery, i'm on about half that, i fell like i need more actually since all my heart does is jump. I do ok, with the med since i was on it before surgery. I hope our hearts calm down and behave, this is an awful feeling.

Susan Robichau  I hear that most of the time the AFIB that happens post operatively is temporary goes away after 6 weeks. Hoping for that!

Sophia Ridley  Hi Susan, I had a MV repair and was in AF post surgery. It took longer than 6wks but did settle.

I took 2.5mg bisprolol and Rivaroxaban (new gen blood thinner). I was fine on that. I did notice that I reacted differently to different brands of beatblocker, even though they were meant to be the same drug. I had an awful time on one and had to switch. This could be something to consider, the dose was the same.

My bisoprolol was increased at one stage to 3.75mg and I was like a zombie; did alter it to 2.5mg night and 1.25mg morning but didn’t help so went back to 2.5mg, which is what I’m on still today.
My AF was rate managed, it may have taken slightly longer to settle but I needed to be able to function.
When AF finally stopped I took it for another 2 months and then started on baby aspirin.

I had more ectopics (why continue on bisoprolol), but they are 3% now which is normal. I expect to reduce to 1.25mg next year. It doesn’t bother me on 2.5mg so happy to continue.

Bonnie Stone-Hope  Hi Susan,
Developed AF after surgery, could not feel it myself- was told by the staff who were watching the heart monitor.

Discharged on:
Metoprolol 50mg twice a day
Eliquis 5 mg twice a day.

Now on:
Metoprolol 25 mg twice a day
Eliquis 5 mg. twice a day.
*This lower dose is much easier to tolerate.

(Also was on Amiodarone for 6 weeks post op (glad to stop that one!)

Jim Harvey   Hi Susan, my post surgery AF was about 2 weeks and I ended up at the ER with dehydration, high blood sugar, dizziness, etc. Got cardio inversion and back home <24 hours later, normal sinus.

Rose Madura  Hi Susan. I had the same reaction to high doses of Metoprolol. I was on 100 mg 2x a day. I'm now on 12.5 mg 2x a day so I feel much better. When I was on the high dose, I would drink an entire 15.9 oz bottle of water with the medicine every time I took it. Regarding Warfarin vs Eloquis...I was never on warfarin but tookk Eloquis temporarily. I do know it is very expensive. Also, I needed a second surgery because of fluid buildup around my heart and had to wait 3 days for the Eloquis to get out of my system. I hope yiiu start feeling better soon.

Carmel Robertson  Hi Susan. I’m not sure if this info is useful or not. I had 3 bouts of Afib after I had a mitral valve repair. On day 2, 8 and then about 3 weeks after I started reducing the Sotalol I was on. I think the Sotalol is equivalent to Metoprolol, maybe it’s the same but a different name. ( I’m from Australia). I was on aspirin initially but after the third lot of Afib put on Eliquis. By week 7, I was off the Sotalol and in a couple of days will go off the Eliquis. I’ve had no more episodes of Afib. All the best with your recovery.

Barbara Wood  Hi Susan, I went into AFib 10 days after mitral valve repair (after being home a week). I went back to the hospital for 2 days & had a cardioversion, have been in nsr ever since, nearly a year. Some cardiologists like to have you wait it out - it's common after surgery & often resolves in a week or so, & some like to see you converted back to nsr quickly. It also depends on how symptomatic the patient is, some people are barely affected by it, some, like me, can barely function with it. Usually they try converting you with iv drugs for a few days & if that doesn't work they do the cardioversion. The cardioversion is an easy, quick & painless procedure.

Susan Robichau  Thanks. For me I picked it up with my IWatch! I was feeling especially tired and breathless but thought I was just having a bad day

Adam Pick  Susan, Uggh. So sorry about this. I am hopeful this video might help you better understand the connection of heart valve surgery and AFib. My thoughts are with you! https://www.youtube.com/watch?v=ydZBp4B8KOY&t=5s

John Clough  Its tough, I had it right after surgery and they tried to get rid of it with a Magnessium drip. That did not work so they put me on Amiadarone which I took for a month, no afib, I went back to work 6 weeks post op got the flu and went into AFIB yet again. I am about 8 months post opp only one other time that I think I might have been in it 3 plus months ago when I was sick yet again but right now I feel fine no relapse. I ave upped my magnessium supplements and hit the cardio hard.

Sophia Ridley  Hi Susan, I had a MV repair in Nov 2015. I had a little AF immediately post op but it’s really kicked in about a week later. Mg didn’t fix it, I refused the ami treatment and I waited it out with beatblockers and blood thinners, it takes the stuffing out of you - I couldn’t walk up a slight slope - but as you get stronger then you can cope with it. I did cardio rehab with it! My journal charts my progress. I was meant to have a CV but I think the shock of the thought of another procedure knocked it back into sinus, but days later it soon fell out again. It did eventually stop. Mg did work another time and I do NOT suggest you try this so soon post op... Also I found walking quickly for 20 mins made it catch up with itself and that would revert it.
I’ve had a few blips and if I’m not careful it goes a little wobbly. I use an app to trace my pulse, it’s fantatic.
I was told 30% of MV patients get it, 90% will revert in rate management. To do a MV op is more complex and there’s more direct intervention and handling of the heart, and sometimes it complains as AF results. I remember some dark days in AF in tears, but there is light! I’m pretty much better than before and so thankful that I’ve been through this.

Lyn Hubber  Hi I am three months since aortic and mitral valve replacement mechanical and I am still out of rythem medication has not fixed it I am waiting for cardio version am told I will feel a lot better seems to be a long time to let it stay out of rythem should I worry ?

Rose Madura  Yes, very common. I had three bouts of Afib during a five week period -- all landing me in the hospital. Hopefully you'll convert out of it and stay out of it. Best wishes. Keep us posted.

Nagarajan Ramakrishnan  I also had Afib the next day after my discharge. Readmitted in the hospital was put on Amiadarone, recovered nearly 24 hours later

Barbara Wood  The first 2 months or so were like that for me. If I overdid it one day, I paid the next...recovery is up & down. Taking short (45 min) naps during the day helped me deal with the fatigue. Best wishes Susan:)

Helen Daw  I am two months post op and still have days where I dont want to do anything. It gets better with time.

Deb Lewis   You are describing my first 3 weeks post surgery. I think that is just early recovery and it is hard and can feel disappointing. After my 4 week anniversary, I have had consistently more energetic days.

Rita Savelis  Sleep! Sleep! Sleep! OHS is exhausting. Give yourself a rest every time you do something, anything.... Your body, and especially heart, has been through some trauma. Be easy on yourself. I was exhausted for weeks/month....

  Listen to your body and rest when you need it. I think this is common. My first surgery was minimally invasive, but i was exhausted for over a month. I think it was medication related.

Carolyn Newell  Oh no Susan! I am so sorry for what you have had to go through. I have numbness in my hand and arm after the angiogram and still do. Went to the doc and he thinks its carpal tunnel but I'm not so sure. I think its nerve damage. Talk to your doctor about it. Mine has been going on since December when I had the angiogram and it sure is a pain same as you burning and numbness.

Peggy Whitecotton  I was told to ride in the back seat of the car with a pillow under the seat belt for 4 weeks. The reason being is, if you are in an accident in the front passenger seat the airbag would do serious damage to the sternum incision and could even kill you. That was in my discharge hospital instructions.

Marie Myers  I was told to ride in the back seat for 4 weeks, just like Peggy. Same reason- the airbag deploying could damage the healing sternum. I was also told to sleep on my back as much as possible, to give the sternum a chance to heal as quickly as possible. I found that sleeping on my back was the easiest for me anyway, and finally graduated to side sleeping at around 4 weeks. I think there are many variations in instructions post op. Things vary a little from place to place.
Sorry you had to experience the stomach virus- that must have been difficult. If the numbness is accompanied by weakness, I would report it to your medical doc.

Rita Savelis  No car rules of any kind for me. No rules about sleeping. But I personally found that I wanted/needed to stay on my back. Doctors assured me that I could sleep in whatever position felt right.
The one "skill" I learned in recovery is how to be able to sleep on my back. It took 6 weeks of bad sleeping but now it is a position that works for me (along with side and back).
Take care.

Peggy Whitecotton  I was told to sleep in position most comfortable. I tried to sleep on my left side (only side I could get on) but I would wake up hurting on my left ribs. I was told the surgeon broke 2 ribs on that side and had wired them together. So ended up sleeping on my back in a recliner for 8 weeks with lots of pillows. I think your body is only going to allow you to sleep in whatever position that puts the less strain on your incision site and give you the best breathing. My doctor knew that. So whatever position is most comfortable go for it,,,,, Trust me, you won't want to sleep on your stomach. :)

Bonnie Stone-Hope  I was advised to use my heart pillow while riding in the passenger seat, to protect my sternum again pressure from the seatbelt. No driving for 6 weeks (to avoid the risk of injury due to steering wheel).
You may wish to advise your physician about the burning sensation in your legs. Perhaps physiotherapy might give you some relief.

Gina Fiorentino  Hi Susan, thanks for your post. It's true (and my husband reminded me of the same thing today) that going through OHS is a lot.

So glad that your valve was able to be repaired!!! The ICU nurse told me that as the anesthesia and stronger medications leave your system, things would become much clearer... and that has held true for me. It was suggested for me to "hold everything lightly during the early stages of healing- as the body knows what to do, it just takes a little time for the mind to catch up and process everything that has happened".

BTW, I listened to an reassuring video today produced by Cleveland Clinic that asserts how (contrary to popular belief) that cognitive issues (pump-head, etc) from the heart-lung machine are extremely rare. I can share the video if you (or anyone else on this thread) is interested. I found it relieving to hear that!

Carolyn Newell  Oh Susan that's great that your valve was repaired and not replaced! Prayers answered. I have heard about the metal taste thing after surgery so you are not alone. Thank for the update as I've been wondering. Glad you were discharged and now you can rest and recovery in the comforts of your home sweet home. xo

Anna Jones  Susan, despite the negatives, I'm very glad that you are doing so well and that you have been discharged. Take care of your self, take things slowly.

Bonnie Stone-Hope  Hi Susan,
I had an episode of delirium (temporary confusion) following my mitral valve surgery, and have since found out that it is quite common after OHS and for patients in ICU. This might be what you experienced.

Glad to hear your surgery was a success!

Mark Wilbur  A big deal, indeed! I hope your recovery keeps improving and that you feel clear headed and on your way to better days soon.

Deb Lewis   I had the metal taste thing for about a week or so. It was definitely worse with packaged foods and non-existent with fresh foods well-prepared.

Gina Fiorentino  Hi Susan, I had the TEE and it was a breeze. They gave me a twilight sedative, and I was so relieved that as soon as I "came to" it was over. I did not have the Radial Cath but I have read that THAT is the preferred method when it's possible to do it that way. Good luck... I will keep you in my thoughts!

Carolyn Newell  Hi Susan, TEE (opps I mean angiogram) was easy except my nurse couldn't get the iv in my arm bc I have small veins and she had to call the head nurse in to do it (my advise if she can't do it on the first try tell her you want someone else to do it). My surgeon told me the arm is better than the groin but sometimes it doesn't go so the groin is the other option. You will breeze through it. My thoughts and prayers are with you in the coming days.

Marie Myers  I had the radial cath and it was pretty easy. Since your surgery is the next day, hopefully they can just keep it open for your arterial line. Save you a stick! Best wishes for a smooth surgery and recovery!

Bonnie Stone-Hope  Hi Susan,
My physician indicated he thought that my wrists were too small for the cardiac cath so I advised that he just use the groin. The IV sedative given to me by the RNs was timed perfectly so I did not feel/remember a thing:)

Just prior to the actual surgery, I had requested a sedative to relax me, so do not even remember going to the OR - perfect!! Hubby took a photo of me smiling, enroute to the OR- no memory of it.

Susan Killian  My cardiac cath was last week so I do not know about the line. But my cath was a snap nothing to it. Will be sending prayers your way!

Anna Jones  Hi Susan, there are several thoughts: The first being that you aren't going to die. There is about 0.5% (1/2 of 1%) chance of death. So the odds are so small you are more likely to die in a car accident or being struck by lightening on your way to the hospital than from the surgery. So, let us instead pray for sunny skies and safe drivers.

They will probably be able to repair the valve.

My surgeon said that the pain medications will control the pain well. He also said that by the time you are released home you shouldn't be in much pain, and that he was told by his female patients that hysterectomies hurt a lot worse. It is now my hope to never need a hysterectomy.

I worry about the A-fib too. My surgeon and cardiologist both mentioned that A-fib is 50% likely as that is the heart's way of dealing with the stress. However, I was also told that medication will usually fix it, and that we won't die from it either. I think it is the chance of cardioversion that upsets me the most. We should still be in the hospital if our hearts act up, and the doctors and nurses there are very used to it and will know what to do.

Depending upon how they operate will determine your scar. From the pictures I have seen, no matter what, it gets much better as it heals and fades. Talk to your surgeon about this. Maybe he can do a plastic surgery closure.

I hope you will breath better too.

Lets hope you don't cough or sneeze for the next year :-)

Gina Fiorentino  Hi Susan, I will certainly be keeping you in my thoughts. I recently had my heart valve repaired 3 weeks ago, and if you hadn't told me that I had just had heart surgery, I would have guessed that I had the flu for a few days... meaning, that it really wasn't too bad (and no, I do not have a high threshold for pain either). When I woke up I felt peaceful (and completely surprised that the surgery was over), and although I had a lot of back and shoulder discomfort with an annoying headache the first few days, it was very manageable with the pain meds. The ICU and cardiac nurses were very attentive and compassionate, and after a few days, I was taking less medication and walking around slowly but easily. I have read other's good experiences with surgery, but was afraid to believe that it could be also true for me. Now I get to also confirm that the pre-surgery anxiety was absolutely the worst part!

Phyllis Petersen  I remember the stress of knowing I needed this done and all the delays with testing and getting a surgical date. I knew I had mitral regurg, but not that it had moved into severe. It was 10 months before I had the surgery and my whole life was on hold until then. Do you know what procedure your surgeon will be using? Each has pluses and minuses. Look through the experiences of those of us who have been through it. There are a few that had complications, but even that I found useful. There's a lot of info on what you need (not much), what to expect, and, most importantly, that most people come through with flying colors and few problems. I was glad I didn't know that statistic about a-fib that Anna posted until recently. Thankfully, I didn't experience any, just some big fluctuations when I came off of metoprolol.

Deb Lewis   Hi Susan, My story is fairly similar to yours. I went from “what hear murmur” to mitral valve surgery in 3 months. My repair was done 2 weeks ago. If you read my journal posts, I tried to write about things that might be helpful for those facing surgery.