Ellen's Journal

Hi, Ellen here. Had a mitral valve repair almost 2 1/2 years ago. Had some bumps, but am doing well. I'm up in the middle of the night as my friend Clare is having OHS today and I'm worried. She's having a mitral valve replacement, likely septal defect repair, and potential tricuspid vale repair/replacement. She's a bit complex :). I'm asking for a bit of heart brother and sister warrior energy for peace for her in her last bit of pre-op phase, focus and accuracy to her surgeon and surgical team, and a whole lot of healing for her damaged and yet tremendous heart that it can come out of this surgery in better shape and recover to it's fullest ability. Thank you my tribe for your psychic energy, it is very meaningful to me. In awe, and in debt, Ellen

Good morning! I had a mitral valve repair with Dr. Luis Castro at Sequoia Hospital in Redwood City, California on September 28, 2016. I'm a little late on this update as I just saw my Cardiologist yesterday and wanted to have my ducks in a row after that scary run of atrial fibrillation! So I finished the month of Eliquis and the 2 weeks of patch monitoring without any further symptoms, YAY! I'm slowly building back up to exercise. My cardiologist basically thinks this is still related to "post-op" atrial fibrillation/flutter. She is in agreement that I am not in the "endurance athlete" category that would put me at risk for atrial fib from other mechanisms, BUT she continues to remind me that I have a scar in my left atrium from the surgery and there is no fixing that risk :). My ECHO looks good and there is no regurgitation from my repaired valve. My EF is good and my left atrium only mildly enlarged, better than pre-surgery! Will await results of the 14 day monitor, but plan to see the EP just to see what he says. He offered ablation for flutter when I had the episodes 6 weeks ago, but I'm most interested in his exercise recommendations. I've been doing some reading and found several studies showing that moderate exercise with interval aerobic training decreases episodes of atrial fibrillation in (non-surgical) patients with paroxysmal atrial fibrillation. Not sure that this really applies to me, but will see what he says. Anyway, generally good news, and even with the scary afib recurrence, I'm better off and my heart is in better shape than pre-surgery :). So thanks to my heart warrior family! and to those of you in the pre-op contemplative phase of this journey, know that the majority of us come through in improved condition and in better health compared to before. Best to all!

Well crap! Been awhile since I posted, and I was looking forward to posting for my second anniversary, but... I'm about 23 months post mitral valve repair, had issues with post-op AFib for about 10 weeks, and had been free of rhythm issues for about 20 months when last Thursday while sitting and working on my computer I had palpitations and then went into AFib! I was floored! We were out of town and I haven't been carrying meds for more than a year, so I contacted my Cardiologist and drove 2 hours back to her office for an EKG. Atrial Flutter, no surprise there. I have yet to have and EKG while I was actually in fib, though it was clearly fib in the hospital post-op on tele. Anyway, went home, took my atenolol and flecainide and was back in sinus in an hour. Now what? Sent another note out to Cards and EP. EP suggested re-starting Eliquis. OK, needed a new script and cash for that, spendy drug for those of you who are not partaking. Talked to Cards and got the OK to resume exercise. Did a SLOW run on Satuday morning, all's well, then I sit to eat breakfast and there go the palpitations again. OK, I stand and walk and they're better. So I ate breakfast standing, and went back into flutter. Crap! Took the meds and was back in sinus. So as with most AFib apparently, the cause is fuzzy..no alcohol, no coffee, and with the initial episode no antecedent exercise! I had been way indiscreet with my diet for about 2-3 weeks as I was taste testing BBQ beef and pork as well as cupcakes for my wife's 70th birthday party. Anyone with any experience with dietary stuff causing AFib? So now I'm back on the no red meat, low carb diet. I am awaiting my chest strap heart monitor so that I can better evaluate my exercise and keep the HR down, and sometime in the next 2-3 weeks I'll be back on a ZIO patch and get my yearly ECHO. My EP has asked me to think about ablation if the AFib/Flutter comes back. Anyone out there with mitral repair had ablation? I'm concerned as they have to puncture the intra-atrial septum to get to the left atrium which is the most likely area causing my rhythm issues. And my repaired valve is right there! I have many concerns about ablation as my left atrium is enlarged from years of mitral regurgitation and that puts me at risk for the AFib anyway. Basically what they are doing with the ablation is trying to scar the electrical circuits, but that scars the muscle as well and puts me at risk for earlier heart failure. Too much in my brain, clearly, but I guess my hope is that there is someone in this community who has some insight into ablation and AFib after mitral repair. Thanks for listening :)

Wow, it's been a year since my mitral repair surgery! I so remember getting up at 4 for the hibiclens shower, walking over to the hospital and checking in, and having found such peace in feeling that I had the right surgeon and the right hospital at the right time. I remember waking up to friends and family and feeling really good for about 30 minutes until the nausea hit. I was green, barfing, and just feeling awful for 18 hours until the anethetics and narcs got out of my system! And then just a little strawberry jello in the morning...that was delicious. I had a frustrating road of afib and flutter for many weeks. That really made me question my decision, but it quieted down and I have been fine off of meds since then. I started cardiac rehab rather late, which turned out to be a blessing in disguise, as I was able to follow my rate and rhythm as I went off meds and during high intensity workouts. I felt so good that I was able to do a mini-triathlon in May with the prodding and fellowship of my friends. We then went on extended vacation and I further tested the rhythm with a polar plunge in glacier water in Glacier Bay :)! That was really cold, but I stayed in sinus...YAY!!! My exercise capacity is better than pre-op. I still feel like my heart rate is high for the level of exercise that I'm doing, but I have faith that my heart will continue to remodel and improve with the great repair. Had my yearly ECHO last week and the left atrial size is better (from 5cm down to 3.5), EF is good at 67%, and there is NO mitral regurg. Today marks the first year of this post-OHS journey and I feel so fortunate that my experience has been largely positive with few stumbles. I do notice changes in my attitude as well. More ease with changing tides and less need for control, more rose smelling, and more gratitude. I am better with bumps and stumbles, both literal and figurative. Not certain if this is a positive pumphead or the result of going through the steps of dealing with a health threatening problem. Whatever the cause, I am grateful for the effect. For those of you preparing for surgery, find a surgeon that suits you and makes you feel confident in their skill. Those doctors collect staff around them with similar excellence and will keep you safe. The first 2 weeks are tough no matter which surgery you have, but it gets better. Do your walking and rehab and keep it up...forever! This site is a godsend, so check in every once in awhile and share your experience with the pre-ops. Let them know that there is great life on the other side :)! Mahalo

I did a short triathlon this morning - 400m swim, 12 mi bike, and 5k run. I did the same tri last year, though with a different bike, and was sooo much better this year! Full credit to my team - cardiology, cardiac surgeon, and especially to the cardiac rehab team who let me do the high intensity interval training, though they were really worried that I'd go back into afib (and I have NOT). It really seems such a short time ago that I could barely walk up a minimal incline after getting home from the hospital. This tri has nasty hills on the run, and I was 20 minutes faster! I really can't believe that :). So be brave, those of you getting into this process. It's a difficult transition from healthy (where many of us seem to be prior to getting news about our valves) to needing surgery. But the surgeons who do lots of these, who've been doing them with great success for years, they are out there and they are GOOD! And after they fix your valve - whatever it takes - your heart will work more efficiently and you can get back to your life. Most of the posts on this blog reflect this. It is certainly a lot to face, but the other side is extraordinary! All the best to those on this journey :)!

Mitral valve repair 9/28/16...seems a long time and also like last week. Had prolonged episodes of post op afib that really frightened me. I don't want to be in afib permanently at 53! I failed discontinuation of amiodarone at 6 weeks and was started on flecainide with continued metoprolol. I started rehab and felt like I could barely exercise because my heart rate couldn't go over 100 due to meds. On the ++ side, no more afib. Well I saw Electrophysiologist about 4 weeks ago and got an ECHO that showed that my left atrium had returned to normal size (unusual). He allowed me to start tapering meds...much easier in rehab!! To be conservative, did a ZIO patch monitor for 10 days. Got results last week that there was ZERO afib and stopped the flecainide completely 3 days ago. I went hard in rehab today and got my HR up to 155 with no afib!! I am soon thrilled!! Still have to meet with EP and Cardiology next week, but hopefully can come off the metoprolol and the blood thinners. Been a bit of a long and scary journey, but today has been a really good day :)

I had MV Repair 9/28 and, wow, the time has flown by! I started back to work at 7 weeks, had another episode of afib and missed a work day. I have been on flecainide since then and no more fib - YAY. I started cardiac rehab 2 weeks ago and have been loving it! I really do feel safer and like I can do more without worrying while monitored. I'm hoping to be able to do a mini-triathlon in April SLOWLY. I see Electrophysiology next month to talk about how long I'll stay on the flecainide and anti-coagulation. I'm hoping to be off in the spring as I have a trip planned to Alaska and don't really want to be climbing on glaciers while worried about hitting my head! So generally, I feel really good. No problems with the valve repair itself, just the post op afib issue that I really hope is soon resolved. Happy holidays to all :) Ellen

Seems all I do is complain about afib. I'm 7 1/2 weeks out, stopped the amiodarone 10 days ago and am back to work and back in afib!! Really unnerving for me as I really don't want to be on anti-coagulate long term. Poopy day :(

Seems this is all I think about. I had been having less afib for 2 days, but now have been in about 5 hours and I'm just frustrated! I know that most people are out by 6 weeks...I'm at 4 weeks in 2 days and I'm worried that I'll be one of those with chronic afib. Otherwise I feel well and had a great 40 minute walk this morning.

My surgery was 3 weeks ago and I'm generally healing well, but I still have this intermittent afib. Saw cardiology today and had an ECHO to look at my repaired mitral valve and also to check for fluid around my heart. Valve looks good and no fluid...yay!! However I had 20 hours of afib from yesterday afternoon through midday today, and of course it resolved before my appointment! So theplan is to stay the course with my angry atria, stay anticoagulate, and see what happens in the next 3 weeks. I'm a bit frustrated, but at least there's a plan :).

Well, I had some skipped beats yesterday which was strange, then woke up at 6 back in AFib. This is my 6th (I think) episode post-op and I find it very disappointing that my rhythm is not controlled more than 2 weeks post-op. Will talk to Cards and Surgery later this morning to determine a plan. So far each of the episodes has not lasted more than 12 hours (in-hospital) or 7 hours since I've been out. I am on warfarin, but INR was only 1.2 after 4 days and doubled dosing starting last night. Wah!!!

As my heart rate has been so low from amiodarone and metoprolol, I can hear a murmur with my heartbeat, especially lying down. Been making me crazy, so I was really nervous about this visit! Cards tells me it's a flow murmur and I'm on bigger taper of metoprolol as my pulse has been mid-40s for the past 3 days. She tells me that it's or all to feel as though I'd been hit by a truck, but I really don't feel that bad, just really SLOW. So I thought that was good news over all and celebrated with some ice ream :)

I've felt so blocked by the metoprolol (I'm small and on 50 twice daily!), that my surgeon agreed that I could start a slow taper. Well, woke up with AFIB early this morning. Interestingly, neither my surgeon nor Cardiologist directly blame the taper. Anyway, back in sinus now with amiodarone bump and starting coumadin. Hoping that this is just run of the mill "my atria are all cranky from surgery" post-op afib. Guess I should just go with the flow. Working on my positive attitude :)

So went back know into AFib yesterday, so started amiodarone last night and dropped back into sinus...yay. Should mean walking papers today! I've discovered that no matter how many positions you can get a hospital bed into, there is no comfortable spot! Pain was well controlled yesterday as I was up all day, but got back into bed last night and arrrggghhh! Finally put my pj bottoms on yesterday and they added to feeling pretty human :). Can't wait to have a shower and get all the hospital aroma gone. Have to say I have been so lucky that there was a valve center locally and don't have to travel to get home. So will continue to impatiently await the team arrival hat moves me to the next stage!

Starting to feel more human :). Got a sponge bath today and that probably helps :). I'm bummed as I'm in a fib today and was hoping not to have to go thru that, but am reassured that at least 30% of valve patients do and pretty much all are out by 6 weeks. Keeping fingers crossed! Like all with the recent surgeries, am getting my walks in, using the spirometers, getting up and then feeling tired and back to bed. I suspect I'll be out in 3 days, and am looking forward to that. My first night was MISERABLE! I was so nauseous from the anesthesia and pain meds and the pain was not a problem! Nausea is soooo much worse than pain in my book! Thankfully that's nearly gone. Still not much appetite, but that's not surprising. Hope that my 3 heart sisters from 10/28 are doing well!