A year and two months since mitral valve repair, a year since the onset of post pericardiotomy syndrome. That's finally gone and I feel great. Today my cardiologist said these sweet words: see you in a year!
Just passed the one year mark from my mitral valve repair! Woo hoo! Such a blessing. Was dogged by post pericardiotomy syndrome for a while, but now really feel like myself. So grateful for this page,
Adam. For all those preparing for surgery, this community is rooting for you! You will get though this!
It's been a while since I checked in, although I continue to pray for all those coming up on their heart surgeries. My mitral valve repair was October 6. Except for a bout of pericarditis, my recovery has been uneventful. I'm back at work, feeling like me. The pericarditis is uncomfortable, and it kind of messes with my head. It's a reminder that "they did something to my heart!" But it will pass. Mainly I am so grateful. Reading Adam's remarks tonight about the loss to our community of a physician and a fellow heart patient are a profound reminder to cherish our days. Hoping all of you are doing well, and praying especially for Jim Gleason and Emily Shively.
8 weeks out, returned to church, preached two services, felt great! So happy to be back to work. Had been feeling pain in left chest but thought it was a pulled muscle, did seem to be getting worse. After church came home and that pain kicked up, headache and fever, nausea. What the heck? Pain in chest kept growing, terrible lying down. Fortunately already had appointment with cardiologist. After thorough exam, bloodwork, EKG, echo, diagnosis: post pericardiotomy syndrome. And another two weeks of rest at home, no work. Not what a pastor wants to hear right before Christmas. I feel lousy, and I'm really down about this.
My husband had some surgery Friday. Thankfully he's home, recovering. He can't drive or lift heavy things ....sound familiar? I am switching from the role of being cared for to Caregiver. Happy to do it, but just in these three days can feel I'm not up to full speed. So tired. And when I'm this tired, there is more pain. It will be 7 weeks tomorrow. Wonder how long til I stop hitting the fatigue wall.
It was six weeks since my MV repair on Monday, and today I am in the office for a few hours. I'm mainly catching with my staff and gauging how it feels to be here. I also had cardio rehab this morning, and I can feel the need for a nap catching up to me.
This Friday my husband has some serious surgery, so please keep him in your prayers. Going to be interesting at our house for a while.
Sunday was our congregation's 60th anniversary and I went to be part of the festivities. Didn't do anything more strenuous than lead a prayer at the reception, but I was up and out for about five hours, and I was toast afterwards. The fatigue and pain were really something. No energy yesterday either. Today was my first day at cardio rehab. I enjoyed it, but I'm beat. And we didn't do that much! I had hoped I'd be going back to work part time at 6 weeks, which would be next week, but now I'm not sure. Also worried as my husband is scheduled for surgery a week from Friday and he will be home 3-4 weeks. Just feeling overwhelmed and discouraged today.
So my mitral valve repair was four weeks ago on Monday, officially 1 month tomorrow. I've been cleared to drive (Yeah!), and to lift things up to 20 lbs. May not tell anyone about that just yet. Signing up for cardiac rehab, waiting to see if my insurance covers it for mitral valve repair patients. Seems some insurances don't. What are we, the poor cousins of the heart valve world?! Anyway feel much better during the day, but nighttime still brings the nerve pain and "electric shocks" along the incision. However I have nothing to complain about except gaining weight from all the great food folks are bringing us. I continue to check in here and pray for all of you, even when I'm not posting. Thinking especially of those who have surgery coming up, and all those who have run into complications. Keep hanging in there, we are all cheering for you. I think of all of you the most when I am doing my walks!
I know it's only been three weeks but I am going nuts not being able to drive, lift, pull,push etc. Doc says I have to slow down, stretching too much. Admit I don't like the pain it's causing. Still, my family is a little unravelled without the usual mom glue holding it together. I know I am healing, and I'm grateful, but also frustrated. How do you stay patient with the healing process?
I'm not taking Tylenol with codeine any more, and I find I do have quite a bit of pain at night. Not sleeping well and then in the daytime I am so tired I almost feel drugged! I actually checked to make sure I hadn't taken the wrong pill by accident. When I do sleep during the day it isn't restful, just feel lethargic. I'm not having much pain from my incision, which is helping well, but more of a burning from underneath it. Weird. Anybody else experiencing this? Called the surgeon and hoping to hear back.
Home one week and want to say a huge THANK YOU to Adam and every one of you who has shared your story, posted about anything, or shared in my guest book. While writing here sometimes takes more concentration than I have, I pray through the list, especially for all of you with upcoming surgery. Can't believe how well I'm doing. Walking going well, incision pain manageable, sleeping many more consecutive hours at night. My appetite is fine and so are my taste buds, for the most part, so there goes my dream of post surgery weight loss. ;-) Reading through your stories I see how simple my mitral valve repair was, and I'm reminded not to whine when things get tough. Many of you have overcome really frightening and difficult issues, and you are my heroes. So glad to be on the journey together.
That I've only been home 2 full days. That my incision will hurt less. That I will be able to walk more. Have an appetite beyond coffee ice cream. Get off Tylenol with codeine. Not make my family so crazy. Help a girl out.
One of the things I read often on this site was people reporting how quickly they got off narcotics, and how happy they were to get off. I went in to surgery determined to do the same. I did cut the narcotics off as soon as possible...but this was not the right choice for me. My pain escalated to the point where it took quite a while to get it back under control. While the pain was out of control, so was everything else....my emotions, depression, fear. It was a horrible experience. The doctors and nurses did everything possible to coax me back on, and eventually did, but I would only take half. Finally I realized, this is ridiculous! We are all different. We recover differently. We have different pain thresholds. We have different surgical procedures and approaches. This is not a competition. It's a journey. So don't feel bad at all if you need pain meds. There is no shame in controlling your pain, only wisdom. Listen to your nurses, they see it all. My day and night nurses, both named Joe, talked me through every conceivable fear and suggested many plans for using pain meds. They are my heros.
Oh, so good to be home! This morning I just did what I wanted, but at a slower pace than usual. Then by 12:30......I was toast! Wow. The fatigue was impressive. Ok, cannot go up and down even short flights of stairs quite so many times, do even a little clean up and straightening.....not yet. Since I barely slept at all in the hospital and hadn't been sleeping well before surgery, I'm savoring each afternoon nap that comes along. Can see this is truly a journey. Glad to be walking along with all of you.
Surgery was Monday. I'm healing, most everything is out of me, I'm walking around and doing my breathing. Stopped the narcotics because I didn't like how they made me feel. Tonight is a hard night. I'm tired, sore, smelly. (Bath/shower tomorrow). Worst of all, seeing how limited I am, I am truly concerned about my family's ability to help me. Their hearts are in the right place, but they are not organizers. It's been hard for them to manage these four days in some ways. Wondering if being so down is normal at this point. Surgeon said be ready to go home Saturday or even tomorrow.
Hey- I made it! Successful mitral valve repair on 10/6. A little dodgy going in when my veins we're too small for the special IV, and then latter my windpipe too small for the tube. But the repair itself was "simple" said the surgeon, and he and the other docs couldn't be more elated. Made It to regular floor yesterday and saw my sons last night. Very hard to sleep here, possibly most uncomfortable beds ever. Spent last night in a chair. No narcotics yesterday either. Some über Motrin type thing and a happy little ambian which scored me a few hours of mostly uninterrupted sleep. Finding a time and place to sleep is tough. I had a aright thorocotomy , which now all the nurses say is the worst post op, but that healing moves more quickly. Either way I am blessed and grateful for this community. Would not be functioning as well without those boxers, Chapstick and heat up in the microwave pillow.
I'll be thinking of this community when I pull on my boxers, slather on my Chapstick and Power-walk across the room. I'm incredibly grateful to have found all of you. And all you October 7 surgery folks, I am thinking of you and praying for you.
I remember seeing a dentist among us, but don't remember who! Anyway I had my dental clearance two weeks ago, including a full set of X-rays and all clear. Now I'm having some funny feelings around the tooth where I had a root canal in January. This could just be the jitters and hyper sensitivity with surgery on Monday. But what if there is an infection tucked away somewhere? Will the antibiotics after surgery address it? Is it potentially dangerous? If this is just me freaking out, you can tell me.
Woke up at 3:30 am again. True, this happens even when I'm not facing heart surgery in two days, but now it happens all the time. Did anyone take anything to help with sleep or relaxation the night before? I'd love to get some sleep the next two nights.
Added some stuff to my story. Realizing my life is way bigger than my leaky mitral valve. Got a haircut, make up application, new glasses and an ugly but comfortable pair of pants to wear home from the hospital. I'm feeling more ready all the time. Love this site. Thanks, Adam!
Thanks so much for writing a response to my last post. Surgery is one week from today. Right thorocotomy planned to repair that pesky mitral valve. Have the heart cath test scheduled for tomorrow a.m., and my youngest in a varsity soccer game tomorrow evening. How 'bout it, troops? Will I be bleacher ready by 7 pm, or still woozy?
I'm interviewing surgeons. Once they get to my heart they all plan to do the same thing...it's the getting there. Trying to weigh the surgical procedure and doctor's volume of mitral valve procedures. There doesn't seem to be a clear choice. Not comfortable with the robotic procedure, would like to avoid the sternotomy. Argh.