Diane's Journal

Wow, where does the time go? Progress has been pretty steady. The challenge for me has been finding the right balance between challenging myself just enough without overdoing it. It's definitely been a bit of a seesaw. I've learned that when I overdo it, I'm not only exhausted later and/or the next day, but at the exact moment of doing too much I get an eye migraine (auras). As of 2 nights ago I finally stopped needing to take Tylenol at night for pain/discomfort (I stopped prescription pain meds after 5 days at home, but I know that everyone is different). Two nights ago is also when I finally stopped having a somewhat elevated temp (99). I still seem to wake up frequently at night. Most of the time I fall right back to sleep, but usually once each night I'll be up for an hour or so, which is really annoying. If anyone finds this helpful, I used a plastic surgeon to close me up, and at my follow-up appt. (10 days post-op) he removed the Steri-Strips (he didn't want them off any earlier) and then told me to begin using a silicone gel (Strataderm) on my incision for the next 6 weeks. Hopefully it'll help in the long run. Also, during surgery I was able to use my earbuds/iPhone, and some have asked about my OR playlist. I made a 4-hour loop of a track from the book/CD called Prepare For Surgery, Heal Faster by Peggy Huddleston alternating with the 6-part song called Weightless by Marconi Union (scientifically proven to reduce anxiety, which I was all for) https://www.inc.com/melanie-curtin/neuroscience-says-listening-to-this-one-song-reduces-anxiety-by-up-to-65-percent.html

In case this helps someone else... Several weeks before my surgery I met in-person with my anesthesiologist. I think it's atypical, especially based on my the reaction of my surgeon's clinical nurse. But I made a very direct request and she was wonderful -- she scheduled the meeting for the day of my pre-op testing (about 3 weeks before surgery). When he walked in, he immediately apologized that he had a scheduling conflict for my surgery date so that someone else would be handling my case, but he didn't want to cancel our meeting. So kind. He walked me through the whole procedure -- some information I already knew and some was new. Since I'm one of those people who likes to understands exactly what's gonna be going on, it was all incredibly calming. We went over my anesthesia history (local and general) in detail, which was great (history of nausea, vomiting that's impacted by slight dosing changes). He said he would go over my case, in detail, with the other anesthesiologist -- and then that other doc and I communicated by email to come up with a treatment plan that felt right for both of us. It all turned out great so that I had less pain, needed fewer opiates, had no vomiting, and my limited nausea was easily controlled those first 2 days so that by Day 3 it was no longer an issue.

Can't believe tomorrow will be 1 week. Recovery has been far smoother and easier than I ever expected -- maybe it was all the mental preparation for 4 months (lol). Last Monday I was definitely ready (and weirdly excited). Arrived at the hospital on Monday at 5:30 AM with hubby and a close friend who's a more proactive patient advocate. We were called back a few minutes late with 2 other patients and their families who also had 7:00 AM surgeries scheduled. I'd see open of those patients when we'd both be roaming the halls, which was kinda cool -- we felt like we had a bond. Nurses were all amazing, felt relaxed. Surgery went quickly and smoothly. First day in ICU was a bit of a blur, but got my 3 drainage tubes removed the following day before being transferred to the step-down unit. Catheter removed next day. One tube site kept oozing like crazy, so by the end of the day the fellow came to put in 2 stitches. Every single day I was amazed at the significant progress from the day before. On Thursday they removed my external pacemaker wires and I was feeling good walking to bathroom by myself, so I let my hubby sleep at home that night. Typical Chicago, there was a HUGE snowstorm scheduled to hit late Thursday nite, and I was pretty sure I'd be going home on Friday. By Wednesday night I was only taking Tramadol and Tylenol. By Thursday I was only taking Tramadol at night and Tylenol occasionally during the day. Still taking Tramadol once at night, and Tylenol. Thought tonight might be my first night to go with only Tylenol, but not so sure now. My progress has been really incredible each day... way more than merely incremental, which has been a huge surprise. That said, I think today is a rebuilding day. More daytime pain, very tired and napping a ton. Last night I had a phone call with my sister that was probably too long (okay, not probably... it was). I was breathless and my cheeks felt hot when I hung up. By the time I was off the phone I had a fever (101) and my heart was racing at a rate higher than I'd seen previously, neither of which had happened previously. Note To Self: short phone calls only. I tried not to freak out and instead calm down. Since surgery my heart had been running hot (my term) at bpm in the 90's when at rest and up to 104/5 if "elevated." It was at 114 after that phone call. Before surgery, my resting heart rate was usually in the high 50's to mid-60's. So I drank a glass of cool water and used my deep relaxation tape, which helped a ton. Got my heart rate down to 99 bpm and over the next hour my temp slowly went down to 99 degrees. I wear an Apple Watch, so in the middle of the night I noticed that for the first time my heart rate was in the 60's/70's. It's been running cooler ever since. That said, I've been VERY tired and napping more today. I've also been in a bit more daytime pain. So I'm viewing today as a rebuilding day and listening to my body. Heading off to take another nap now!