It's hard to know what to say on this 1 year anniversary of my mitral valve repair except that I am very grateful. This year seems to have passed so quickly yet it was also the longest and most difficult year of my life. The most important thing is that my heart is healthy! I saw my cardiologist this week... says my heart is working perfectly!
Looking back to last year at this time... all that fear and anxiety, so many unknowns. I read these posts religiously and spent many hours researching the website. It's hard to believe it's been 11 months since my MV repair. Thinking of all the OHS friends with whom I shared this experience. Hopefully you're all feeling great and living happy, healthy, uneventful lives!
Happy New Year! 2015 was quite a year! Filled with unexpected challenges, fears and a whole lot of anxiety. However, at 8 months post-op, the strength, knowledge and support of this community more readily come to mind. Thinking of HVS patients comforting, informing, reassuring one another... I know I've been blessed with a deeper faith in the kindness of strangers AND a healthy heart... what a great year!!
Sending good thoughts and prayers to those facing surgery in the coming months... You're that much closer to recovery and brighter days lay just ahead!
I'm curious if others have experienced post-op cognitive issues...short term memory loss, difficulty thinking of right word or remembering names & numbers, following directions... ?
It's been almost 5 months since my mitral valve repair. I've recovered well physically, take only aspirin and small dose of metoprolol. I'm basically healthy, active... assumed this would all improve over time but some days it almost seems worse?!
Has anyone else experienced these types of symptoms this far along in recovery?
Thanks for any thoughts...
3 months ago tonight I was in ICU having breathing tube removed... 1 of worst parts of my OHS experience.
Tonight I'm comfortably tucked in my own bed, so happy to have reached this 3 month mile stone! Re-reading the posts in my journal has helped me see how far I've come and what an amazing supportive community this is... Thank you!
When I learned of the "2015 Patient Success Week" challenge, I thought Adam's goal to increase awareness of heart valve disease and the incredible advancements being made in valve surgery was a terrific idea! However, compared to many posts on this site, I didn't consider my own case to be particularly remarkable.
I was diagnosed with mitral valve prolapse as a young child. Over the years, I saw a cardiologist regularly, had routine echocardiograms and pre-medicated for dental appointments. Doctors said that I would most likely require valve surgery at some point but even as my mitral valve regurgitation progressed from moderate to severe, I had few (if any) symptoms. Aside from a case of bacterial endocarditis in 2001, I continued to live an active, healthy life.
On April 21, 2015, at age 47, I had my mitral valve successfully repaired by Dr Girardi at New York Presbyterian Weill Cornell. The procedure, done through a mini sternotomy, went very well. I am now almost 3 months post-op, recovering nicely. My heart murmur is gone and I have resumed most normal activities. I would be lying to say it's been easy. Open heart surgery with 5 hours on the heart and lung machine, was traumatic to my body and mind. I have yet to fully comprehend the magnitude of this experience but I do know how fortunate I am to be living in a time when mitral valve repairs are routinely performed and well perfected. And that in itself is an extraordinary story!
Week 8, may have been a turning point? I know recovery is full of ups and downs but l think I feel better more consistently.... good days seem more frequent. I'm told I sound stronger and look healthier, better color. I don't get quite as tired, at least not until later in the day. I had a good report from recent echo, ruled out any fluid build up around my heart. I've been off Metoprolol for 2 weeks and BP is still fine, HR even a bit lower. GP listened to my heart yesterday and commented on how 'different it sounds'... no more murmur!! It was, by the way, a murmur so loud and clear it could practically be heard without a stethoscope!
My head still feels sort of foggy and sleep is still a challenge. I'm going to try Tylenol PM. I'm sure a solid 7 or 8 hour sleep would do wonders for my recovery! I am getting migraines with aura and pain again... almost everyday this week. I'm hoping this will pass as my body continues to adjust to the valve repair and circulatory changes.
Probably the best sign of progress last week was that I occasionally forgot about my OHS! I'm grateful this was possible after just 8 weeks of recovery. For those awaiting surgery... know that moments of 'normalcy' are not far off!
My sense of timing must still be off because it feels like a month has passed since I wrote my 6 week post!? That foggy, confused feeling I mentioned has improved significantly. I stopped metoprolol last week, pulse is running higher (around 100) but cardiologist is not concerned. Sleep is slowly improving too. I can finally rest on either side and off my sore back. I even woke up on my stomach without much discomfort. Overall my energy level has increased and I'm beginning to feel more like myself, which is actually what got me into trouble yesterday...
I woke up feeling good, no pain, best morning yet. Did some housework, some laundry, organized a closet, re-arranged some furniture... a little carried away but it felt good to be productive and have the energy to do things I'd wanted to do for weeks. In the afternoon I walked to school to pick up the kids, went to the park, the ice cream truck, had dinner in the neighborhood... felt fine!
About an hour after we got home I started to feel very bad... exhausted, dizzy, nauseous. My blood pressure and heart rate were up. The muscles in my shoulders, neck, back, chest were tight and throbbing. My legs and arms felt weak, hands were shaking uncontrollably. I was scared something major was going on with my heart. Luckily, my amazing cardiologist was on call. Talking to him over the phone saved me a trip to the ER (and finding someone to come stay with sleeping kids). My doctor assured me what I was experiencing was not likely a cardiac event but symptoms brought on by extreme fatigue and anxiety.... phew! After taking a xanax, and sleeping 6 hours, I woke up tired and sore but incredibly relieved I hadn't done any damage to my newly fixed heart!
Finding my post-op limits has been tough. It's like my brain doesn't register what my body is feeling? Before surgery, I read posts about younger patients pushing too hard in recovery, causing pain and set backs. At the time, it seemed like common sense...take it slow, follow the rules ... now I realize it's not that easy. I have to be aware of my 'new normal', to be conscious of my limitations when caring for my kids and doing things I've always done without thinking... not paranoid, just mindful and attentive to how I might feel after the fact. Not easy for a busy mom of 2 active boys but better than the alternative! Just writing this is helping me process what happened and gain awareness. Maybe it will also help another busy mom facing OHS...
I am 6 weeks post from a successful mitral valve repair! Surgeon and cardiologist say I'm doing great. I think I'm recovering well physically... scar healing nicely, chest pain is manageable, appetite is back, visual disturbances are mostly gone, blood pressure is good and doctor is fine with my (90's) heart rate. So much to be thankful for!
What doesn't feel great is my foggy head! I'm still not sleeping more than 4 hours at a time. I'm active all day... light housework, taking care of kids, cooking, walking, etc. but I definitely don't feel like myself. I have a hard time knowing if I'm 'over-doing it' until it's too late and I'm suddenly exhausted and feeling awful. My sense of time is off, 6 weeks still feels like 6 days...I feel fuzzy, not sharp, hard to focus. Has anyone experienced this? 6 weeks seems late for residual effects of anesthesia or heart/lung machine? Stopping the 25mg metoprolol tomorrow so I'll see if that makes a difference. Also began taking 20mg celexa week before surgery to help with the anxiety.
Thanks for any thoughts :)
Many things surrounding my mitral valve repair are a blur but 8:30 on the morning of 4/21/15 is crystal clear. After laying on a stretcher in the 'holding area', for what seemed like an eternity, I said good bye to my husband. We had been waiting there with other cardiac surgery patients and their families since about 6:30am. I had checked into the hospital the day before for my cardiac catheterization and had managed a decent sleep in my quiet, single room. My anxiety level rose, however, as my 7:30 call time came and went. When the attendant finally came to get me at 8:30 I was a bundle of nerves. I asked him if I could stop at the restroom, which in hind sight was a little silly seeing as I was minutes away from general anesthesia and a catheter, but it made me feel better. The attendant said I could walk the short distance to the OR which also helped my nerves. When we reached the doors to the OR, we were met with several other people in surgical gear, including the anesthesiologist. I was asked a lot of questions, things I'd answered many times over like my name, what procedure I was having, etc. Everyone was serious and focussed but the man who led me through the OR doors was especially kind. Evidently he could sense my anxiety because he went out of his way to make me feel comfortable, I even laughed a bit at his jokes. When we walked into the room, I was surprised by the amount of machines and equipment. It looked more like a factory than a hospital and in the center was a narrow little table covered with a sheet. As I climbed up on the table I started to cry. Looking back, I think it was just a release of all the morning's anxiety because I was very confident in my surgeon and definitely ready to get on with the procedure. The nice man reassured me that I'd soon feel very relaxed, 'like I'd had a martini'. Then, unlike all the tv shows, there was no counting, just quiet.
I am almost 2 wks post op from a mitral valve repair. I'm experiencing spells of dizziness and visual disturbances as well as some numbness in my fingers and hand. I have had ocular type migraines since childhood with similar symptoms but the dizziness is new and pretty unsettling.
Has anyone else had any of these issues post op? Thanks!
Great news: had my surgery yesterday and they were able to repair my valve! According to Dr. Girardi, the surgery went very well and as planned with no complications. So now the recovery begins. So far, taking the breathing tube out was awful and bar far the worst part. But they say my numbers are good and on the right course.
Well it's finally my time. Admitted to hospital today for my cardiac catheterization. All went well, some uncomfortable moments, especially laying on back for 4 hours afterwards- ugh! Doctor said there were no surprises, all arteries fine. I'm laying here in bed hoping I will get a decent night sleep before 8 am OHS. Praying Dr Girardi can repair my mitral valve instead of replace it but will be grateful for a successful outcome either way. I'm feeling fairly calm, given the circumstances. I have let go of the things I can not control and focussed on the things I can. The people taking care of me have been kind, compassionate and highly capable. I will let them worry about the medical procedures while I focus on a positive attitude and strong faith that all will be well. Miss my boys very much tonight but happy to be their brave mom taking care of business :)
Oh boy, last week at home before surgery. So much to do, so many emotions. I think I'm mostly worried about my kids and keeping their lives in order. Sometimes, in the middle of the night I wake up thinking about the actual surgery and recovery process but mostly I'm leaving that to my exceptional surgeon. A girl can only handle so much!
Has anyone brought in a plastic surgeon to close their incision? I wouldn't have thought of it but it was mentioned at my pre-op today. Might not even be covered by my insurance. Just wondering if anyone has gone this route? Thanks!
I'm a mom of two amazing boys, ages 6 & 9. I'll be having a mitral valve replacement or repair in April. I'm wondering how other moms explained their OHS to their young children? I'm also curious about recovery. What kinds of things were difficult? Where and when did you need the most help? Any advice on keeping my kids secure and well care for through this challenging time, would be most welcome! Thank you.
My emotions and thoughts are all over the place! It's hard to write a post when I feel different from one moment to the next. I go from anxious to excited to completely terrified. There are still days when none of this seems real. I even wonder if surgery is really necessary. Then there are times when my heart is racing or I'm feeling a tightness in my chest and its easier to acknowledge the symptoms of my severe regurgitation. After many years of being asymptomatic, the change has been fairly subtle but my instincts tell me something's different. My cardiologist always said I would notice it before he would see it in my echo. I keep going back to that day in the surgeon's office when he told me it was time. He knows its real. I'm grateful to have a brilliant surgeon who I trust to fix my valve and make me healthy.
Knowing mitral valve surgery was in my (distant) future, I have been researching this site and reading posts for quite sometime. After receiving my surgery date last week, I thought maybe it was time to write my own story. Although I've already found this community to be very helpful, its scary to see myself here. It's as if things just got very real. I feel like I've jumped into the deep end of the pool.