Jennifer 's Journal

Hi, all! I’m more than 6 months post-OHS for a bicuspid aortic valve replacement and generally doing well. However, I’m still having some sleep issues. Almost every night, I wake around 4 am and struggle to get back to sleep. I’m not having a pounding heart or racing thoughts. I’m just awake. I toss and turn and have a bit of trouble getting physically comfortable, but mostly I’m feel wakeful. It usually takes- me an hour or more to get back to sleep. Is anyone else experiencing this so long after surgery?

To all the ladies who have had a full sternotomy - how long did you wait after surgery to have your first mammogram? I’m about 4 months post OHS, and doing well overall, but I still have some incision pain sometimes. I’m well overdue for a mammogram, but the idea of being squished and smooshed by the machine at this point is really unappealing.

AHA Heart Ball! My husband is on the local AHA board and we’ve been going to this event for years - ironically, years before I knew I had a heart problem. This year I’m proudly wearing a dress that shows off my scar! Support your local American Heart Association!

Okay, so this might sound odd, but… Since my surgery I’ve been smelling a phantom smell. When I’m sitting in my recliner in the family room, I sometimes smell smoke, like cigarette smoke. To my knowledge, no one has smoked in my house since we moved in years ago, and no one else in my family smells it. I’m assuming this will go away in time, but it’s weird. Anyone else experience this?

Anyone else feel they hit a wall during recovery? I’m 4 weeks postop after OHS to replace a bicuspid aortic valve. I’ve been doing well, feeling a little bit better more or less every day. But the past few days I feel like I’m going backwards. I’m weepy and sad and achy and just generally tired and unmotivated. I recently stopped taking all Rx pain meds, so I suppose that could be a factor. I was cleared for driving yesterday and I’ll be starting cardiac rehab soon, so maybe that will make a difference. Just wondering if anyone else is having a similar experience?

Just wondering about post op pain management. How long did you all take any sort of prescription pain meds after surgery? I was released with a week of Tramadol, and I’m feeling like that not going to be long enough.

Well, I made it out alive! No kidding that was the first thought I had when I woke up. “Well, that’s cool, I survived!” This is not an experience I’m eager to repeat, but I had surgery Monday and came home on Friday feeling not horrible, so I think that’s a win. Some thoughts on my experience…

- I wasn’t nearly as nervous the night before surgery as I thought I’d be. I ate pizza and watched a movie at home with the family, then actually got some decent sleep.

- The morning of the surgery was fine. I checked in early as instructed and sat in pre-op for a bit before going into surgery. The OR was cold and bright, as expected, but not too scary. The next thing I remember was waking up.

- I woke up out of anesthesia in record time. They told me I was doing great. I was not doing great. Sometimes all the positivity can be annoying! The pain from the actual surgery site was nothing in comparison to the pain I had in my head, neck, arms and shoulders. Being splayed out on the table and the muscular pain and tightness that causes can be really bad. 

- And then there’s the breathing tube. That the worst. It’s terribly unnatural and scary to have a tube down your throat breathing for you. It took many hours before I was breathing well enough on my own to have it removed. That first night in ICU was honestly horrible. Not being able to communicate was so terribly frustrating. I tried to type out messages, but I was shaking so badly post-anesthesia that I really couldn’t use a phone. I recommend having a notebook handy to scribble on. That would have been easier. My husband and the nurse thought I needed more blankets because I was shaking so hard. They kept piling them on. I was actually burning up. I found myself becoming almost angry with them for not understanding. Have a plan in place for communicating with your family during this time. 

- On the plus side, when I was finally able to have the tube removed, it was a quick process and only a bit painful for a moment. And what a huge relief! And I got ice chips! Nice cold chewy ice chips! 

- Another frustration was the back and forth nature of recovery. I’d feel pretty well in the morning, then really bad again in the afternoon or evening. I had to remind myself that recovery isn’t a straight line. It’s two steps forward, one step back, but eventually, you’ll get there. 

Has any else had their surgery delayed? I was scheduled for Friday, but I received a call from my doctor’s office this morning saying that there is a scheduling issue and I’m being moved to Monday. I’m weirdly upset about this.