Teressa's Journal

At 14 weeks post surgery my emotions are mostly back to normal, but sometimes, out of the blue, it all feels overwhelming. Last night in I rolled over and could hear my valve clicking. Normally this doesn't bother me at all, in fact, I usually view it as reassuring when I notice it. Last night that wasn't the case. I felt so overwhelmed with feelings about having a foreign valve in my body and having gone through surgery with all of its emotions and physical pain. Will I ever fully recover? Will I be healthy again? I have to live the rest of my life altered. Fortunately, my husband was still up and sat with me until I calmed back down and started drifting off to sleep again. 

Today I'm not in the same heightened state of emotion, but I feel blue. It doesn't help that outside is wet, windy, and dark. I think I need some tomato soup, a toasted cheese sandwich, and some hot chocolate.

Wishing everyone an untroubled day.

I haven't written here about my first night post surgery because it was so traumatic. I'm having to deal with some of that trauma today because my father had carotid artery surgery today, and I'm fighting with the hospital to stay with him overnight. I refuse to let anyone stay without an advocate after what happened to me. I'm supposed to have a conversation with the CVICU/ICU manager this afternoon to discuss what happened to me back in January. I'm going to go ahead and write it here so I have a record and to help me get my thoughts clear for the conversation.

Things post surgery started okay. When I woke up my husband and father were there, but I was still intubated. I was in severe pain in my back and in my right breast where they put the camera through. For clarity, I'm very large breasted, so this was a deep puncture wound. I continued to stay in severe pain all night long. They refused to allow my husband to stay with me that night, so I was without an advocate. I knew it was not going to be puppies and rainbows, but the level of pain I experienced was extreme. 

After being in pain from the moment I woke up, they moved me to the chair and made me stay there until I was moved to normal room the next afternoon. I was never allowed back in the bed during that whole time in CVICU. At 4:00 AM they decided it was time for me to walk. I was still in severe pain. I was literally balling my eyes out and stumbling along with the walker. The nurse in front of me started yelling at me. Yep, yelling at me. She was saying things like "You're never going to get out of here if you don't walk right now. Open your eyes. No you can't stop." I was a checkbox that come hell or high water they were going to mark as completed. Now I get they they have certain milestones that should be met, but I am a person, not a number. Writing it out, it doesn't seem that bad, pain after heart surgery and a rough first walk. The reality is I have never felt so helpless, dehumanized, hopeless, or vulnerable  in my entire life. That was literally the worst thing that has ever happened to me, including watching my mother die, twice.

The emotional impact is way worse than the physical pain was. I know this is more about me and my anxiety, but I'm still having nightmares and panic attacks about that night at nine weeks out.

The first thing my nurse did the next morning was look at me and say, "let's get your pain under control." She was amazing. Possibly the best nurse I've ever encountered. After that I was walking all they wanted and more. I was asking for extra walks, etc. Because of my lung issue, I only spent one night in a regular room, then went back to CVICU. (Sleeping with 15L of O2 was a bit too extreme for a regular room.) The remainder of my time was normal recovery. My recovery post hospital has been fine except for the continuing nausea and vomiting. 

I truly hope no one ever has to go through what I went through that first night. One of the salt in the wound things is I expressed to my surgeon's NP in my pre-op appointment that my two biggest concerns were my pain not being managed and being forced to do things before I was ready to do them because of how my mother was treated. It's like a had a premonition of things to come.

Tomorrow will be 8 weeks since my minimally invasive aortic valve replacement with an On-X 23mm mechanical valve. My question is how long did it take for you to be pain free? I've been in the tolerable level without medication since a week or so after surgery, but I'm curious when does it really stop?

I have my additional problem of nausea and vomiting that causes its own set of pain, i.e. my ribs are very sore, but I'm still experiencing quite a bit of pain and discomfort.

Yesterday marks 7 weeks since my surgery. Right after 6 weeks I started feeling like myself again. I returned to work on Monday at 6.5 weeks.

I'm still experiencing nausea and vomiting multiple times a week. My cardiologist thought it would be fine for me to wait a couple of additional months then maybe see a GI specialist. (I've requested to change cardiologist.) My GP did bloodwork and scheduled an ultrasound of my gallbladder for next week. I know my gallbladder is of no interest or concern for my cardiologist, but the fact that he though a few more months of constant nausea and throwing up was acceptable means he is not the right Dr. for me.