Alex's Journal

Greg Lewis  I had it for a couple months at least, and right side heart failure during that time. Now I get a lot of PVCs that they are still calling benign, at least for now. My cardiologist said my heart was damaged during the second, emergency, surgery. And that is causing the PVC problem. So ablation could be in my future...who knows. 
I am getting more used to the PVCs. They used to go away after a week, but this run is sticking around longer.

Klara Čičić  Oh Alex, I'm sorry you are experiencing this. I hated having AFib as it was very symptomatic for me. I had few longer attacks before surgery (24-48h) which resolved spontausly. And after the surgery I had only short episodes not longer than a minute which also resolved spontausly. I am on bisoprolol 2,5mg. I am now 6 months post-op and they seem to be more rare. I must stress that I almost always have some trigger like sleepless night, coffee, tiny bit of alcohol, big emotional stress or big physical strain (especially heavy lifting or short sudden anaerobic activity). Good luck

Ana Brusso  So sorry to hear this but also I’m positive you will do better the second time around. Can’t answer your questions but I’ll be praying for you and your recovery. God bless you 🙏❤️

Rose Madura  I'm sorry you had to have another cardioversion   I had all kinds of side effects with Amiodarone and couldn't wait to get off it.  The biggest thing that happened was my eyesight was affected. My nearsightedness got much worse.  I couldn't wait to get off of it and after my 4th re-hospitalization, I flat out refused to take it.  They put me on Multaq (very expensive but my insurance paid well for it). It has less side effects but interact ls with a lot of meds.  

Louise Moore  I was on amiodarone before and after my cardioversion ( six weeks total ) and the only effect I had was at the 4 week mark.  I woke up one morning and my right eye was seeing very blurry and no drops or wash could clear it.  It was a cataract and happened overnight - so strange.  The ophthalmologist thought it strange as well because my lens was clear, not cloudy but thickened.  I researched and it didn't take me long to find an exact case like mine, female, same age.  The ophthalmologist, my Primary care and cardiologist didn't think it was from being on Amio for such a short time but I'm convinced it was.  I feel for you having to go through this again but I know you'll get through this and I hope the time passes quickly for you to push through this post op time and be smooth sailing.  💞

Rex Austin   Hey Alex. I’m on Amiodarone also with some other meds. My head feels weird and my legs feel like rubber. I have what looks like a stye on the inside bottom of my left eyelid that won’t go away. Not sure if it’s connected but didn’t have it before. I’ve had spells that make me think I’m having a stroke. Talked to the doctor about it. He says it’s the meds I’m on. This heart stuff is for the birds! Best of luck to you. Hope you get straightened out soon. 

Greg Lewis  Hey Alex! Praying for your cardioversion to work. Been there, and I know how nerve racking it is! Can't recall if Amiodorone caused those side effects. What else are you on? 
Drink a ton of water. Every day. It helps everything sooo much! Including rhythm. 
But I can tell you, that Amiodorone can cause toxicity,  and send your thyroid for a loop! This can give you rhythm problems. It happened to me. Ask your doctor about it.
Praying for you!!
PS..my cousin had cardioversion that wouldn't stick, so he  had ablasion done. That Fixed it.

Miriam St.Clair  Hi Alex, I  had a cardioversion done at the same time you had your first outpatient cardioversion. I went into cardiac arrest for 20 seconds during the procedure but came out of it with chest compressions and atropine. I'm still on amiodarone and fortunately haven't had many side effects. I lost my sense of taste after my surgery and I think it was exacerbated by the stroke I had a few weeks after surgery and it has never returned, so I can't blame it on the amiodarone.  Similar to Rex, I periodically get the rubbery legs thing but I'm still in sinus rhythm, at least as of yesterday, and I was able to start cardiac rehab on Thursday. I just finished a seven day cardiac monitoring period and am anxious to see if I'm in sinus rhythm all of the time. I hope you feel better soon, I've heard so much about bad side effects from amiodarone. I know you're so ready to get back to normal,

Alex Sagan  Thanks all of you who replied. Sounds like a few of us have side effects from the Amio. Greg, I am only on Eliquis. 

Louise Moore  Excellent!! Bravo!  I know how that feels, Alex and recovery marches on!  Well done!  Whew!  Onward now, heart warrior and may peace, you enjoy :~) 

Greg Lewis  I completely understand the relief you feel! Surgery caused my AFIB, so Cardioversion worked well! I was put back in rhythm on Sept 9 2021!  The day my recovery truly began! 
Now yours can begin, without all the neck popping!! Yay for you!!! 

Alex Sagan  Thanks! Now I am just dealing with awful side-effects from Nadolol and amiodarone. Ugh. This, too, shall pass!!!

Rose Madura  Alex, I'm sorry you are going through this.  With me, I was one of the fortunate ones where the Afib and Aflutter went away in it's own in about six weeks.  I was very symptomatic with it and was hospitalized each time it hit me..  In the end, I was on a medicine called Multaq which was very expensive but had less side effects than Amiodarone.  God bless you and I hope you feel better soon.   

Louise Moore  Alex, I really, really feel for you - you've been through a lot already.  I got AFib or flutter exactly 2 weeks post surgery and it felt so scary and horrible.  My local Doctor prescribed a front load of Amiodarone, 400mg, twice a day for a week, then 200mg twice a day.  By the third dose of Amiodarone, I was back in Sinus rhythm and overjoyed at that!  My successful Cardioversion was 14 days after I started Amiodarone.  Note: My Doctor stopped metoprolol ( 12.5mg daily) when I started Amiodarone.  Second note: Amiodarone is a strong drug with the possibilities of serious side effects, so have a serious discussion with your Doctor or perhaps an alturnative drug would work.  Please keep us posted and you have our care and support - you WILL get through this!  You surely are a gladiator, heart warrior superior!

Miriam St.Clair  Hi Alex-I think we're in the same boat. I had my surgery for radiation heart disease at the Cleveland Clinic 5 months ago to replace my mitral and aortic valves, repair of tricuspid valve, and aortoplasty. I had a stroke post-op from the Afib so I ended up being at the CC for about 5 weeks and since then, have been very concerned about Afib. I just found out I'm in constant Afib and will be starting Amiodarone today and am scheduled for a cardioversion in a week. I'll let you know how it goes. I hope everything works out for you and you can get back to normal sinus rhythm.

Rita Savelis  So sorry to hear about your Afib Alex. That sounds hard. I was in hospital for 6 weeks after surgery, so even though I felt awful, I felt a bit safer. 3 of those weeks were at a live-in cardiac rehab hospital. After that I came home for a few days and then had to go back through emergency for another 2 weeks. After that I saw my GP and pharmacist frequently just to have someone to talk to. Coming home from hospital was scary - I felt I had been thrown out on my own and had no one to ask questions of.  There are many difficult side issues brought on by the surgical trauma to your heart. Many are common but no one tells you about how they might feel and how you should react. Much empathy to you. Hope your heart settles with meds or another conversion or time.

Alex Sagan  Rose, what kinds of symptoms were enough to require hospitalization? Do you recall what side effects you had from Amiodarone? I just started it. 

Alex Sagan  Hi Miriam, who was your surgeon and where are you now? My surgeon at CCF was Shinya Unai. I am now home in Boston. Sorry about the stroke!!! My Cardioversion is scheduled for this Thursday. Good luck to both of us. I am optimistic it will work; my question is whether it will “hold” longer-term, and how much I can eventually reduce the medications. 

Miriam St.Clair  My surgeon at the Cleveland Clinic was Dr. Michael Tong. Dr. Unai was someone I considered but Dr. Tong has a lot of interest in radiation heart disease so I went with him. I'm in Virginia, near DC. Once I got home from Cleveland, I had to take charge of the Afib as everyone seemed to think warfarin and metoprolol would do for me the rest of my life. I had to ask my cardiologist for an electrophysiology referral. So far, the amiodarone that I've been on for rhythm control hasn't bothered me (I know it's difficult for some people) and I, too, am hoping for the best for my cardioversion on Thursday. I'll take the amiodarone for 10 days after the procedure and so hope this does it for me.

I hear that an ablation can be difficult getting the catheter in the best of circumstances and I wonder if it's more difficult with radiation heart disease patients and all the calcification. I hope everything goes well for you on Thursday. 

Alex Sagan  Miriam, I know Dr Tong is very well-regarded. Dr. Unai also does a lot of complex surgeries on radiation patients.  Good luck to both of us on Thursday to get back in rhythm. And here’s hoping it lasts.   I am VERY interested to know, what was the discussion about how long to stay on Amiodarone after the Cardioversion?

Miriam St.Clair  My electrophysiologist was really pushing for the Watchman device alone, which prevents any clots from leaving the atrial appendage. I'm all for that, too, but I also want to get the afib under control because I feel a bit unwell from it. I feel it's impeding my ability to get back to my previous level of activity. I also know the Amiodarone makes people feel unwell so the doctor wants to re-check everything at 10 days for normal rhythm because he thinks that if the cardioversion works that's about how long I'll need the Amiodarone to keep the rhythm normal. If the rhythm isn't normal, we'll move on to another treatment. The Amiodarone, so far, hasn't bothered me and in fact, I feel a bit better. When I check my carotid pulse, it doesn't feel like it's banging out of control so I'm interested to see what the pre-procedure ECG shows on Thursday. How are you doing with the Amiodarone?

Klara Čičić  Alex, you are a heart gladiator! So positive and courageous after all you went through. Wishing you all the best. Keep on ticking! 

Rita Savelis  Hi Alex. Nice to hear from you. I hate betablockers too and couldn't wait to get off metoprolol ( a year later).  Now I take ivabradine, which is for those who don't do well on betablockers. I hear you on feeling down as you deal with aftereffects that seem never ending. Especially with double valves. Heavy sigh. Happy late birthday. Welcome to the 61 club.

Robert Miller  Sorry to hear. I have no idea about consequences from radiation damage to the heart. In my case I needed the maze procedure. I had to wear a device for 2 weeks after my second surgery to monitor the heartrate. maybe that is something worthwhile to explore (it's uncomfortable and I had to tape it back with medical tape all the time). Would maybe ablation help? Check with your surgeon if that hasn't already been addressed. Again, I don't know much about your kind of situation. Just giving some pointers from my experience. 

Rita Savelis  Alex, I don't know. Heavy sigh. My heart rate remains high, but I think the anticoagulants I take protect me from stroke. I didn't have afib. It was me who asked to stop betablockers (I ask that about all drugs - except anticoagulants... and levothyrox because I don't have a thryroid). A lot of patients stay on betablockers a long time, forever, and do well on them... Keep asking your doctors if you have to be on them and why and what would happen if you stopped. Cardiologists prescribe a lot of drugs - that's what they are good at and, alas, cardiac problems don't really go away. But you need to be your own advocate as well. Right now I am back on lasilix for recurring pleural effusions and I would give anything to have this not be a permanent med.

Alex Sagan  Hi again, Rita. Lots of wisdom in what you say. Yes, I had a ton of new meds thrown at me. Too many, too quickly. I asked my cardiologist if he could simplify or if he suspected any were causing trouble, and he deleted two meds. I am still on Lasix and still seem to need it. Sorry about your pleural effusions. What’s the first sign that they are back? wheezing? Coughing?

Alex Sagan  Robert, thanks for comparing notes. They still hope my natural conduction will be enough. Hope your Maze went well. 

Rita Savelis  Alex, I had 4 pleural effusions after surgery in 2015. The first 3 were drained while I was still in hospital. Draining did not hurt and made me feel energetic afterwards. I went back into hospital for the 4th pleural effusion a few weeks later. Since there was fluid in my lung linings I felt tired and had to sometimes sleep with my chest elevated. No pain. The doctors did not know when the effusions would stop, bu they finally did. But there was always a bit of fluid in the pleura. Life went on. I stopped lasix. In 2020 I had 2 more (unrelated) cancers to treat at the same time. The pleural effusions came back. I felt tired and more out of breath than usual (I never got over being out of breath when climbing stairs or walking quickly after 2015 - but I still do both, everyday). I now can recognise the signs in my body - a certain feeling of heaviness in my chest, maybe a bit more out of breath. In January I went to have another pleural draining and they ended up getting air into my pleura. Turns out that this is a thing, and that it can happen if one has too much draining. It took 2 weeks for the air to dissipate (the danger is that one's lungs could collapse) and I was asked to have 4 verification chest xrays during that time. During that time I just felt like I had another pleural effusion. Long story short, I now am on 20mg of lasix a day to control this recurring problem. I hate lasix. (But it is pretty standard in the weeks/months after heart surgery. I remember having a tire of water weight around my waist on my skinny body). But I am feeling better now. Heavy sigh. I commend you on asking your doctors why they automatically put you on all these meds (cardiologists love meds!!) and whether they all are necessary. I ask all the time. One has to be an advocate for oneself. Take care. Hope you are feeling a tiny bit better each day. It takes time. You went through an amazing operation. Congrats to your surgeon who had the skill to replace a TAVR with a mechanical valve. And much empathy to you as you slowly recover.

Alex Sagan  Rita, thank you, as usual, for the thorough and informative note. Yes, I did ask my surgeon how many TAVRs he has explanted. I am worried about long-term/recurrent issues going forward. I will take the approach you suggest regarding medication. 

Marie Myers  Sleep was not easy for me for weeks after surgery. I got my best sleep in the recliner, but it was sporadic. I finally asked for alprazolam, which helped me sleep. I only took it a couple times a week, because it is easy to become dependent on it. A friend of mine had good results from buspirone 5 mg at night for sleep. You could ask about that also.  I was told to sleep on my back for 2 months for best healing of my full sternotomy. I was not comfortable on my side till around 8 weeks anyway , so that was fine with me. Every body is different, and what works for one might not work for another. Hope you can get more sleep!

Rita Savelis  I was told I could sleep in any position that I was comfortable with. It took me 6 weeks to get used to being on my back! Geez. But now, years later, I can sleep on my back because of that experience. I do think that you can sleep on your side if you are comfortable in that position. I hate meds but I did occasionally ask for sleeping meds because my body needed the rest.

Rose Madura  I used a wedge for a few days but didn't really care for it.  Then I just used a sequence of pillows. I'd usually sleep in bed for a few hours then would wake and go downstairs to the recliner.  And I would nap as needed.  But I don't remember any instructions about that.  Like Rita, I can now sleep on my back when before surgery, I never could.  

Danielle Elizabeth  I take a prescription anxiety med every night that’s a sleeping aid off label. It knocks me out. If I need to sleep on my side I hug my heart pillow against my sternum to keep chest straight. I can’t remember the first few weeks well after OHS… I’d wake up in night sweats 5X a night, so I’d have to take afternoon naps. 

Miriam St.Clair  My surgery handbook from the Cleveland Clinic said to sleep on my back for six weeks. I was concerned about my sternotomy because it was my second one and I was really worried about it coming apart so I followed their post-surgical instructions closely. It was very hard for me and similar to Danielle I had night sweats and I took afternoon naps.I rarely slept and mostly got up and paced all night. 

Louise Moore  Hi Alex, like Miriam, my info says to sleep on your back for six weeks - and if you must sleep on your side, use pillows for support.  I bought a wedge pillow and that wasn't comfortable for me so I used two pillows to make a T shape to lie on and I put small, super soft pillows at my side to rest my elbows on.  Going all the way with this theme, haha, I used another small pillow between my knees so even when lying flat on my back, I could shift my knees from side to side to at least give you the feel that you were sleeping on your side.  PillowsR'Us!  The first few nights I did take pain meds before sleep and I think that helped relax me and I didn't need them more than that.  I never needed them for pain.  If you need to cough or to help getting out of bed you can take the knee pillow and hold it tight.  My bed is relatively high off the floor so getting into and out of bed was from a sitting position was not hard for me so I was able to sleep in the bed.  In prep for this surgery, I bought a recliner but didn't need it to sleep at night though it came in handy for day resting.  I hope the T pillow works for you! or maybe you'll come up with something new! 👍🏼

Pamela Gregory  I also had the sleep on your back instructions for 6 weeks which was really hard for me because I am a side sleeper. I found I was pretty comfortable in my recliner for about 2 months. Maybe a couple hours in bed with wedges too to keep me on my back

Greg Lewis  If I was really hard up for a sleep, I had Ativan. The first time I took that, I woke up 8 hours later half in the recliner, half on the floor! It was great! Because I had anxiety issues too, it was just what the doctor ordered! It got me through some rough patches. Also Zopiclone. But I couldn't sleep on my side for quite awhile. Months.

Mindi Wieseman  I chose to sleep on my recliner when I got home from the hospital 2 1/2 weeks ago, and i'm stillI here. I'm surrounded by pillows on top and beside me, so I'm very comfortable and protected from my furbabies in case they get a sudden urge to jump on me and smother me with love. But then, I can sleep on my side or back. I can't recline too far back though because my back will hurt.  In the hospital, I had a miserable time just being in the bed, let alone sleeping there. I slept mostly in their (uncomfortable) chair/recliner??. 

Amy Berger  8 days post op and having a love hate relationship with my recliner! I love how easy it is to adjust and get in and out but never been a back sleeper and struggling to find the right kind and amount of pillows to help w sleep. Seems like small squishy pillows are the best 

Leona Resch  Sleeping is definitely an issue even at 6 weeks! I’m trying to sleep in bed on my back - they said for 8 weeks- but always waking up! Sometimes I just give up and go to my recliner!

Rita Savelis  Alex, feel free to move to your side if you are comfortable in that position. I personally could not get comfortable in that position (for a few weeks) but was told I could take it whenever it felt right. Alas sleeping is really an issue for almost everyone after heart surgery. Heavy sigh. I feel for you.

Rita Savelis  Hello Alex. So happy to hear from you and happy that you have left ICU. Betablockers are fairly standard after OHS (to slow down your heart and give it a break). I was on Metoprolol for a year. Being groggy and upset could be due to SO many things after surgery. You have been through a lot and kept yourself strong and now is the time that emotions begin to come out as you process what has happened. Feeling exhausted, more exhausted than ever before is common after heart surgery. I also remember feeling that every day was the same and I wasn't improving. It took awhile to feel a tiny tiny bit better. That said, I could not wait to get off of betablockers because they slowed me down. I went into a depression a few months after surgery and once I was allowed to stop metoprolol (months later) I immediately felt better. Was that a coincidence? There are other betablockers you could try and your dose could also be lowered but it is still early for you. I feel for you because it is still so very early. Take it easy. Be vocal with your doctors. Try to rest as much as you can and go easy on yourself. 

Klara Čičić  Dear Alex, I didn't have challenges adopting to a beta blocker, but to heart valve surgery postoperative period -yes! I think, although you clearly had your heart rhythm challenges, you are still in the very early stage of healing which is physically and mentally most demanding... Try talkin to someone, share your concerns with doctor you trust, nurse, and someone close to you...I am sure it will ease your mind. You are going through a lot right now, have a little more patience, try to trust medicine and day by day you will feel better.... We have all been there. Hang in there, heart warrior! 

Marie Myers  Just curious what dose of metoprolol you are on. Some people do feel a bit slow on them, but like Rita said, it could be part of the recovery process. You are very early in the recovery process. I felt like my thinking skills were slowed down for a couple weeks post op, and I had a non-complicated surgery and recovery. Emotionally I was all over the place for a few weeks also. Both the slow thinking and emotional response normalized with time. That said, if you are on a high dose of beta blockers, sometimes lowering the dose or switching to a different beta blocker can help. I was on 12.5 mg of metoprolol twice a day for a couple years, and then was switched to bisoprolol 5 mg once a day. Keep us posted on your experience, but please keep in mind you are very early in the recovery process. The first several weeks were the toughest!

Miriam St.Clair  Hi Alex. It's so good to hear from you and glad to see you're able to post from the step-down unit despite what you've been through. I was put on 12.5 mg metoprolol twice per day post surgically and am now on 25 mg metoprolol, twice per day. I had the same issues you did, with the grogginess and feeling upset. I felt that I wasn't getting better and I felt that for months after the surgery. I'm just starting to feel closer to normal recently after 4 and a half months post-op but I plan on discussing the metoprolol with my cardiologist next week and possibly changing it. The recovery is so slow for radiation heart disease patients and you have been through an extremely complicated surgery. You were in the ICU for a long time and you're still in the hospital so this has been rough. What I realized about my surgery was that every homeostatic mechanism in my body had been completely disrupted so while it definitely could be the metoprolol making you feel bad, it could also be any number of issues associated with your surgery. I would discuss it with the doctors there at the Cleveland Clinic, which I know can be hard as they always seem so busy but this is important and I would make it a priority. It's hard to imagine at this point that you'll ever get back to where you've been but it will happen and I hope the doctors can help with this. I'm so glad you were able to post and get us updated. What a journey it's been for you!

Pamela Gregory  Hi Alex, I am also on Metoprolol 25 mg. For me it has been 3 months since surgery but I was extremely emotional (fine one minute-in tears the next) for the first 2 months after surgery. For me I think it was a million emotions hitting all at once. Relief it was over and I was alive, frustration over not living my normal life, dealing with being uncomfortable, etc. The past month my brain feels much better. I don't think the medicine had anything to do with emotions for me personally. Wishing you steady progress forward in your recovery

Patricia Miller  Alex- I have been on Metoprolol for almost 10 mos. Was  on 12.5-25 mg couple mos before surgery due to pvc’s. Had frequent pvc burden 4 months post surgery likely associated w my pericarditis. Have been on 75 mg since October. Cardiologist doesn’t want to decrease it yet since things have settled down and doing well. Are you on long acting dosing? Succinate. Wondering if switching to evening dosing would help you if on am schedule. I haven’t had drowsiness symptoms but a friend could barely tolerate 25 mg due to sleepiness. You’ve been through a lot and your fatigue could be a combination of everything.  I found cardiac rehab to be helpful and affirming with the  steady progress. Set small goals. Moving in forward direction definitely feels good. Hang in there. It is so hard when progress feels slow. 

Rita Savelis  All the responses here are helpful. I agree with Miriam that almost every mechanism in one's body is disrupted with heart surgery. I take levothyrox (because my thyroid has been removed) and my thyroid hormone levels were all over the place after surgery. Doctors suggested not changing my med dose because my body just needed the time to get over the intense trauma it had been through and my hormones would stabilise. It's hard. As your body needs to adjust to what it's been through, it also needs to adjust to the new meds that have been prescribed (that often no one tells you about before surgery). There is a protocol of treatment that isn't always right for everyone and needs to be fine tuned for you. I have a post on this site from 2015 when I left ICU (after 5 days) for a regular hospital room and I was glad to be out of the insanity of ICU but  still feeling like I had been hit by a truck.

Leona Resch  Hi alex! I am on a beta blocker called atenolol 25 mg twice a day. I had my surgery Dec. 20 and they said they keep you on these for awhile to prevent a fib by slowing your heart rate down. I find myself a bit woozy, lightheaded and dizzy especially if I change positions too fast. I also am having trouble sleeping with lots of dreams- hard to say if it’s normal discomfort of recovery but these meds do cause bizzare dreams and insomnia in some people. I’m also tired but again dont know if it’s the medicine or just normal  recovery’. My cardiologist said these medicines will make you more tired and the hope is to wean off at some point or go to a lower dose. You are still in the hospital and there are so many things your body is recovering from it’s hard to say how much of it is that it the medicine. I was exhausted at the point where you are and if I compare myself now to then I am much more awake and energetic but not quite back to my old self. This could be just part of recovery also and not so much the meds. I guess time will tell! Good luck on your recovery!!! 

Susan Lynn  Alex - You are very early into recovery - as Miriam very eloquently explained, it could be many things that are making you feel groggy and upset. Recovery is, unfortunately, not linear - sometimes it feels like one step forward and two steps back. But, every day you are getting better. Communicate your concerns to your doc about your symptoms and it is very likely they can give you other options.

I didn't love metoprolol after surgery, but I now take it every day to keep PACs away. Please keep us posted. You'll see improvement with every passing week!

Tim Traub  Alex, I had surgery on 21 Nov. Was on Metropolol 50 mg twice a day until mid December. For me, they lowered my HR too much so they halved my dosage. I bought an Apple Watch for Christmas and recently noticed my sleeping HR was 39 BPM. I also was having high BP while sitting which would go to normal BP when standing. Because I asked lots of questions of my cardio rehab nurses and was vocal with my cardiologist… my next appt is in 5 weeks… my Dr has taken me completely off the Metropolol completely.  My HR and BP are now in the good range and I feel great. Always felt like Metropolol was like a dulling mechanism:.. not horrible but probably was good to lower my HR and BP for awhile:.. but  now glad to be off of the med at the 10 week point post surgery.  Best wishes for your journey.  You’re so early in the process.  Keep a detailed journal of your HR and BP day and night so you can have a data driven discussion with your Dr as you heal. 

Mindi Wieseman  Hi Alex. My aortic valve replacement was January 5th this year, and I was on metoprolol 25mg twice a day up until about 4 days ago when my BP readings were too low and was told to stop the med. I felt depressed and tired a lot on it, but no one told me it could be the metoprolol. I think it was!  I feel better not on it, and fortunate I could go off it. I keep a detailed account of my numbers, and if I question something, I'm a phone call away from my cardiologist. The home physical therapist contacted my surgeon's office actually, when my BP dropped, and it was then I gradually went off metoprolol. Take care, Alex, and prayers to you for a great recovery!❤

Frank Giovanniello   Alex, the meds play a major part in stabilizing you body. The doctors will adjust them as time goes on. The emotions hit everyone. Some harder than others, some longer than others. I had a bad case of wild emotions. I wish you all the best.

Alex Sagan  Thank you, everyone, for your replies. They reduced my dose and changed it to time release. I am now tolerating the medication.  

Louise Moore  You'll be alert, comfortable and happy in ICU soon, Alex, with a beautiful newly fashioned heart and now gliding into recovery, slowly, gracefully with ease!  We'll all be thinking of you and await your news when your ready!  Salute!

Kristian M.  Sorry just realized your surgery is today! my operation was done by Dr Unai.. he is great! you will be fine. Best of luck!

Donna Casaletto  Wishing you a successful procedure 🙏‼️ Looking forward to hearing from you on the recovery side 😊‼️

Rita Savelis  Thinking of you Alex. Don't feel that you have to post right away after surgery. Take the time to heal and just be in the moment. There will be time later to write your story. 

Greg Lewis  Praying for you and your team. May your doctors, and nurses have the strength and wisdom, to work a great result in your surgery tomorrow. 

Klara Čičić  Good luck Alex, you can do this! You are in excellent hands! We all did it, so will you! We are cheering for you.

Ana Brusso  Read your history but got confused with your dates.  Did you or not have your surgery already? At any rate, God bless you 

Marie Myers  Ana- Sounds like Alex had a TAVR , but now has to have it replaced along with some added procedures. 

Rose Madura  God bless you Alex. You are a true heart warrior.  I wish complete success with your upcoming surgery.

Alex Sagan  Ana, thanks. I see now that my TAVR story from 2018, and my update about OHS for mitral replacement this month, were not together. I tried to correct that now.

Alex Sagan  Rose, thank you. We are all warriors on this website, whether we like it or not! I appreciate the blessing.

Ana Brusso  Thank you Marie, I get it now. Alex, wishing you a successful procedure. I will lift you up in prayer and we will be here to welcome you into recovery. 

Rita Savelis  Hi Alex. Was so glad to hear (when you began posting) that you could buy some time with an aortic TAVR until your mitral needed replacement. I had both (radiation damaged) valves replaced in 2015 with heart surgery (in France). I also had my tricuspid repaired (the surgeon checked it out while in there). The operation went well but recovery was long (as they had told me it would be.) I spent about 5 days in ICU and 3 weeks in hospital. I was exhausted. I also got an unexpected pacemaker a few weeks later (while still in hospital) and had 4 pleural effusions drained. After that I spent 3 weeks in a live-in cardiac rehab hospital. I could have just gone there everyday as an outpatient but I was still so very very exhausted. Also in France they let one stay in hospital longer. But that is all 8 years behind me. I was 53 at the time. Thinking of you and wishing you the best. Take care. Ask any questions you like, but as you know, each case is singular and everyone has their own experience. I often felt like an alien on this site as I had such a long recovery. But I tried not to compare myself with anyone else. Best, Rita

Alex Sagan  Hi Rita. Soooo nice to hear from you again!!! 

Thank you so much for sharing all of that. Very good to know more about your experience. I also have radiation heart disease, as you may remember. I am told that folks like us tend to have more days in the ICU, and sometimes more complications like fluid to drain. Post-op complications are a big concern.

My conduction has been reliable so far--despite a right bundle branch block and a partial block on the left--but I also have heightened pacemaker risk from this surgery. How did you find out you needed the pacemaker and how is life with that in addition to the replacement valves? 

What kind of monitoring or check-ups do you do? I remember you have mechanical ones? Are your valves working well? What anticoagulant do you use and how is that?

We are about the same age, I think. I am 60 now. Hoping to be on the other side of a successful surgery and hospitalization by my 61th birthday on February 21st. 

Rita Savelis  I actually had no idea when I went into surgery that needing a pacemaker was a possibility (apparently 3% ) so it was a shock when I needed one. The hospital cardiologists allowed my heart several weeks to try to get back to a normal rhythm but then decided I needed a pacemaker implanted. My heart was beating so slowly it exhausted me to move from the bed to a chair. I wasn't happy to receive a pacemaker, but I can't complain about having a pacemaker. It's an unsightly bulge under my skin (I am very skinny) but other than that I don't feel it or think about it. I see a rhythmologist once a year for about 5 minutes. I understand the batteries will last 15 years or so.  I have been on anticoagulants for 8 years (coumadin). They take some getting used to. I was very nervous at first. Now, many years later, I don't think about them and test about once a month and handle my own dosing. I have a high target INR (3 to 4.5) because of the double valves (especially mitral) and take about 8 mg of coumadin. I have had several interventions (biopsies and simple procedures) and one needs to bridge between pills and IVs or shots of anticoagulants before and after. But cardiologists handle that. It's a drag and then one gets on with it. My valves are fine. Every heart ultrasound has been fine. I do sometimes suffer from recurring pleural effusions. No pain, just tiredness. So I sometimes have to take diuretics or have pleural drainage. I wrote about so much of this on the heart valve site. I really needed to express all that I went through. Now when I look at it it feels like a dream that happened to someone else. My only advice is to give your body time, try not to do too much, allow your body to recover at its own pace. The heart is a big deal and surgery can spin many other things in your body out of whack. But they will come back to normal given time. One can't see one's heart, like one can see a broken leg, but it needs at least as much time to get over the shock of surgery. I'll be  62 in September. Happy early birthday. Happy 2023. Take care.

Alex Sagan  Hi Rita. Thanks so much for the long message full of helpful detail and good advice. My risk for a pacemaker is definitely higher than yours was. My conduction has been completely reliable but I have a conduction block on the right bundle branch so the left side is what I rely on and that is where they will be doing the surgical work. We will see what happens with that--I am also skinny, but if I need a pacemaker and I'll have a bump, so be it. My surgical plan is to get tissue valves that will accommodate valve-in-valve replacements later. The doctors say they are now reliable and last more than a decade. That is supposed to keep me off coumadin, but it sounds manageable for you. I do feel that I need to revisit the valve choice again with the doctors before a final decision. Too bad you have had effusions, but it sounds like you are on top of them. I wonder what complications I will have long term. Your advice about healing sounds wise. With healing there is often a subtle combination of patience and gently pushing yourself. But this operation is way beyond anything I have gone through physically, so it's a mystery for me, and also a bit scary. I am trying to distinguish in my mind between fear of bad outcomes, on the one hand, and fear of pain the challenges of recovery, on the other hand. The former could be catastrophic but less likely. Just gotta hope it goes well. The pain and challenges of the recovery period, by contrast, are inevitable, and I know I will just need to persevere to get through that. Surgery is three weeks from today. In the meantime, happy 2023 to you and everyone, and very early happy birthday #62 to you, Rita. Thanks a lot. 

Alex Sagan  Thanks, Rita. I am doing a lot of guided meditation to try to manage my emotions, but I expecting a roller coaster. 

  Alex, isn't it amazing. My heartbeat was quite strong for a few weeks after TAVR. It has since quitened down. I think the heart is dancing with more efficient use of blood. My hope is that one day everyone who needs new valves will have the chance to experience tavr. I still can of believe it.

Barry Kanick  Alex,,,,,,,,,,,,on your Dec 22nd post you said the following>>>> "All the doctors say that radiation survivors should never do two open procedures because the adhesions that occur after the first open procedure lead to poor outcomes for second open-heart surgeries". ,,,,What exactly are they describing as adhesions??? ,,,,My Aortic valve story on "My Journal" page is practically identical to yours.

Rita Savelis  So happy to hear that your intervention went well Alex!
Now that your aortic valve is beating and not whooshing, hope that your mitral valve also functions well for a long long long long time! Take care.

Note to Barry Kanick: Each case of Radiation Associated Cardiac Disease (RACD) is singular. Radiation exposure is heterogeneous and patients can't be uniformly managed but require individualized surgical approaches. It sounds like you didn't have multi-valve problems, so your surgeons made a specific decision for your situation. Hope you're doing well with your new valve.

Barbara Wood  Glad all went well! May you have a smooth & swift recovery!
(My surgeon said my level of scar tissue from left side breast radiation was comparable to what he would typically see in a second ohs. My level of radiation (8 years ago) would be less than the Hodgkin survivors who would have recvd much higher doses.)

Barry Kanick  Greetings again Alex. When you should find the time,please send me an e-mail. >>> barry.kanick@volvo.com. ,,,,I would like to share an article with you.

Alex Sagan  Hi all. Great to find your posts today when I logged on!!! My incision soreness is fading fast, and I've been very active, walking and getting back to yoga and weightlifting.

Karen, I've also had a such a strong heart beat. Maybe the dancing you describe. And I have already danced at the bar mitzvah of a friends' son!!! Actually, dancing at parties was one place I had symptoms, so it was amazing to feel the change now. And, like you, I am still in awe of the procedure I've undergone--simply incredible.

Barry, I read your journal and am amazed how similar our stories are!!! Rita is right, of course, that there may still be differences in what course of treatment will be best. Your plan to a valve-in-valve TAVR down the road is very thoughtful. If I am lucky, that is what I'll do, too, though my mitral stenosis may require an open surgery at simone point. I've enabled you as requested.

Rita, thanks for following my story and for the post-operative good wishes. The TAVR should take some pressure off the mitral, though I think the opening (rather than the regurgitation) is the main issue. I have a follow-up echo tomorrow in Boston and will see how the mitral looks--hopefully, as you say, it will be good for many years.

Barbara, interesting about your radiation scarring. Sounds like your surgeon managed it. A friend was just asking me about whether her left-side breast cancer treatment could have affected her heart. I hope you are doing well with everything!

Warm regards to all.

Alex

Helen Daw  Sending prayers and positive thoughts your way! I just had my surgery 17 days ago and it wasn't that bad.

Gerald Poulton  The TAVR makes great sence in your situation, good choice sonce you are facing a second operation not to far down the road 👍

Alex Sagan  Thanks for your good wishes, and also for the encouragement of shared stories and your informed opinions. This community has been almost the only way for me to connect to others with similar issues, and I appreciate the virtual community that your sharing and mutual caring creates.

The surgery went well, with no complications. The OR at the Cleveland Clinic was a sight to behold, and Dr. Krishnaswamy is a master of his craft. My TAVR procedure was Monday morning and they sent me home Wednesday. Hard to believe I had valve surgery this week and I'm already feeling great. With twilight sedation, I hoped I would remember the actual procedure, but even though they say I asked some questions, I don't remember anything after they started my IV. My aortic area has gone from 0.74cm to 3.3cm, and measured velocity and pressure are dramatically improved. Slight para-valvular leak but the doctor says that amount is common and not problematic. The most likely complication would have been a pacemaker, but so far I'm ticking away without one, which is especially fortunate given my right bundle branch block. Amazingly, the sound I hear when I lie down to sleep has changed from a loud whoosh to a pronounced beat--the first time I heard that was stunning. So, I'm really happy about this outcome, and am hoping for some good years with my new aortic valve.

Good luck and good to all of you, ands please keep sharing your experience and wisdom.

Alex

  Alex, I am 60 and had Tavr procedure in October of 2017. I cannot tell you how awe inspiring it was, I was under conscious sedation and the procedure took no more than an hour.The next morning I was discharged and within 2 weeks was basically back to my normal self but with extra energy. Good luck with your procedure.

Barbara Wood  That sounds like a very good decision Alex, & a carefully researched one. The CC would have been my first choice, but my HMO only allowed for facilities in NH & ME. I did fine & am so pleased with my outcome, but the radiation exposure makes it all potentially much more difficult. So glad you made the decision you did...best wishes & let us know how it goes - there are a few of us irradiated heart people here!

Alex Sagan  Thanks all for the (spirit behind the) likes, and especially Karen and Barbara for sharing your stories and wishing me well.

Karen, your comments about the TAVR are inspiring and actually help me to be a bit excited for something that I have been thinking about more in a fingers-crossed sort of way. Interesting that TAVRs are becoming more common in folks our age. Was there a specific reason you were offered the TAVR? Seems like most youngish patients are still be offered open surgeries most places.

Barbara, I am working on the insurance stuff. I have a PPO plan so that helps. I am so glad you had a good outcome. It is really nice to know that there are other irradiated folks out there and around here. Long may we live in fellowship! But, it is a heck of a club ain't it?

  I chose TAVR for many reasons. My mother passed away after having her aortic valve replaced in 2001. She spent 90 days in ICU. My heart team at Sentara Norfolk have been involved with TAVR from the beginning stages and do 3 to 5 TAVR a week. My cardiologist said the newest valves for TAVR are performing as well as SAVR and he believes they will last as long. Also, they can perform another TAVR (valve in valve) if and when I need it. With the way technology is speeding along, I decided to go for the TAVR.
Hopefully you will have the same outcome as I did. I was home in less than 36 hours and only required two Tylenol for discomfort as the femoral site. It has been 3 months and I am walking 4 miles a day. All I kept telling my wonderful doctors and nurses was that I could not believe how easy the whole procedure was. Keep us informed on how it goes. Will be praying for you.

Alex Sagan  HI again, Karen. I am very sorry to hear about what happened to your mom. My step-father also died after several weeks in the ICU (following a stroke). It was a tough situation. My own decision was complicated by mitral valve questions, but I'm feeling good about the plan. My TAVR will be March 5. Hope to update you after! Thanks for the prayers, which I really do appreciate--I don't like the idea that I am now one of those people who need prayers now, but, well, I suppose I am. :)

Barry Kanick  To Alex,Karen & Barbara,,,,,,,,,,I had thought TAVR was only approved for higher risk patients that were typically much older people??? ,,,Or did they recently allow a 2nd tier range of somewhat younger people say between 55 & 65??? ,,,,,,In early 2016, TAVR wasn't actually offered to me whereas I did sizeable research just like Alex did & consulted various doctors @ Cleveland Clinic,Penn Medicine & Lehigh Valley Heart Institute. ,,,,,,My story is hugely identical to Alex's adventure. ,,,,,,,,That being said, I had the aortic valve replaced on July 5th,2016 & walked out of hospital 3 days later with no side issue whatsoever. ,,,,,I only accepted 500mg of extra strength Tylenol and barely needed that. I breezed thru the procedure with relative ease & hugely rehabbed myself being that I'm already sizeably athletic. I do expect TAVR possibly 10-12 years & possibly more down the road.,,,But I'm still a little perplexed as to how both of you were actually offered TAVR in 2017 & 2018???,,,,,"My Journal" Page tells my overall story.

Alex Sagan  Barry and I have been in touch about this, but in case others are interested, the answer from what I know is that TAVR is increasingly available for younger radiation heart disease patients because radiation damage can impair healing in a way that makes multiple open surgeries riskier. So, while TAVR was developed for patients considered "high risk" for an open surgery, it is now being offered in some hospitals to some people whom they categorize as "moderate risk." This is a relatively recent development, and while I was offered TAVR in Cleveland, neither MGH nor BIDMC in Boston could not offer it to me.

Rita Savelis  I'm sorry to hear of your situation Alex. I had Hodgkin's disease in 1977 as a high school student, and in 2015 (at age 54) I had my aortic and mitral valves replaced with mechanical valves, and my tricuspid valve repaired.
So I feel for you because Hodgkin's keeps on "giving" long after radiation is over.
My surgeons were specialised in this kind of post-radiation stenosis. Our chests have scarring and calcification inside and it's not advised to have multiple surgeries if they can be avoided.
With multiple valves replaced with tissue replacements, the valves can wear out at non-simultaneous rates, making it even harder, as one might go while the other is okay for a few more years. The mitral valve, especially, is a tricky and more difficult valve to work with. Most surgeons will try for a repair but this is not always possible and especially with post radiation stenosis.
Doing double valve TAVRs would put you in a "trial" because there is not enough data at the moment on how long these last. Many have high hopes for the future of these valves. There is just not enough data yet. There is no protocol for doing this type of surgery at your age without being part of a study. But those studies are happening and interventionists and patients are eager to try them.

Your case is very specific and I feel for you. No one deserves to experience radiation...and then OHS.
And you can't be compared to someone whose valves need replacement because of other issues.

It sounds like you are on top of the situation because you have gotten multiple opinions. You'll have to trust your gut and especially the experience of surgeons with post-Hodgkin's.

I live in Europe where TAVR was developed and okayed long before the US. But it wasn't necessarily a good option for my case, and for multiple valves.
But it is certainly done.
And patients have the final word.
A young patient like you would need multiple TAVRs, and there is less historical data on this.

Wish I could be more helpful.
There are definitely varying opinions, as you have seen. It's not a definite science.
So there is not a real "right" answer.

Wishing you the best as you go through this new ordeal, after cancer 30 years ago.
Take care.

Barbara Wood  Hi Alex, I had left side radiation for breast cancer 7 years ago & recently - 7 months ago- had ohs to repair my mitral valve. I did a lot of reading on surgery on the irradiated heart beforehand. It seemed the latest consensus is that TAVR would be preferred over the sternotomy. Being mitral, that wasn't an option for me - I had a sternotomy. My surgery was done by Reed Quinn in Portand ME. I would have preferred Mass General, they have a cardio- oncology center ( as does the CC). But I am 100 o/o + happy with my outcome. Dr Quinn said there was some scarring around the heart, comparable to a second surgery. My sternum & incision healed very quickly with no problems. I did have a pleural effusion - that was somewhat expected - but it was drained a few days after surgery.

I dreaded this so much, the radiation throws an extra wrench in there, but my outcome has been very good, I'll be out on my skiis this afternoon!

Mass General is highly rated, so is Brigham ( & they have a cardio- ontology dept too), as is CC. It's a very tough process, deciding which procedure & location to go with, but you will be in very capable hands at either, I'm sure.

Best wishes to you & keep us posted...

Civita Fahey  HI Alex, I did not have your issue with Hodgkins but, as Barbara said the Brigham and Women’s is one of the top hospitals in the area for valve surgery and other complications. I had my valve replacement there in April with the chief of cardiac surgery Prem Shaker.. maybe a second or even third opinion is something you want to think about.. I had 3 before I decided on the Brigham ( MGH being one). I felt the Brigham was slightly more advanced in this area as they were rated #5 in the country. best of luck to you

Alex Sagan  Dear Rita, Barbara and Civita: I am extremely
appreciative of your replies. It is very helpful to hear your stories and benefit from what you've learned from going through this. I'll write again with to pose a couple of questions. Thank you, again, so much. -Alex

Alex Sagan  Rita, Barbara, Civita, and anyone else following these posts: I have an update. After meeting with 10 doctors at 4 hospitals over 8 weeks, and sorting through three different treatment recommendations, I have chosen to do a TAVR at the Cleveland Clinic, and to live with my native mitral valve however many years it works well. The TAVR could be replaced with another TAVR when it wears out, but (based on current treatment options) it seems more likely that I will do an open surgery in a few years that will replace both the TAVR as well as my native mitral valve (which is likely to be more stenotic down the road). My hometown of Boston has great hospitals, and I was impressed with the doctors at MGH, but the doctors I saw in Cleveland have more experience with radiation heart disease, and they are able to offer the TAVR based on more experience with patients in my situation.  I am hoping for a successful TAVR in a few weeks, and hoping that this choice will work out for the best in the years ahead. Thanks for your support!

Rita Savelis  Hi Alex, thanks for the update. Your decision sounds like a good one for you at this time, especially if it can give you a few more years before the mitral valve needs replacing. The longer one can hold out before replacing that specific valve, the better. So the doctors decision to wait on it, if they can, seems logical. Glad you found good doctors with radiation heart disease experience. Best of luck. Take care. And please keep updating and posting. Hodgkin's patients and their stories interest me particularly!