Maeve's Journal

Whew! That was a ride but hopefully looking forward to heading home later today or tomorrow. Surgery went as well as could be expected -- no groin incision and the surgeon didn't even need to stop the heart! I had some trouble coming off the breathing tube and struggled with bad nausea until Midday Saturday. Keeping food and water down has done wonders. I'm feeling a little scared to go home, but have been so consistently uncomfortable in these hospital beds and chairs it'll be nice to have my own mattress back!

I'm officially a week away from being on the other side of surgery! Pre-ops yesterday were stressful and involved too much waiting, a parade of physicians, lab work, an x-ray, and 5 different stops, but I've cleared that hurdle. Going into this final pre-surgery week, I feel pretty ok. Sometimes, I'm skeptical of how calm I am and worried I'm in denial. I've been trying to take every opportunity I can to do things with my body that bring me joy while basking in the waning summer sun. The past couple of weeks have also been difficult reminders that life keeps happening, despite my impending OHS. Two weeks ago, one of my close friends/ chosen family disclosed they'd been diagnosed with Leukemia. My partner spent last week in NJ for their Grandma's funeral. I've been thankful that I will get better and come through this healthier than I've ever been. I know the next month will be a difficult struggle, but at least the problem and solution are straightforward and overwhelmingly successful. For a period a few months ago, I resented my body for betraying me. Recently, the couple times I've found myself gasping for air trying to ride up one of the many hills in Seattle, it's got me excited to see what I can do with my more-able body, the bike rides and hikes I want to take, the places I'll walk during recovery, the different martial arts I'll try. I'm ready for this!

How soon after surgery (median sternotomy) did folks feel up for short outings ( +/- 1 hr) for things such as grocery shopping, non-cardiac appointments, church, social visits, etc? I'm in the process of setting up my care calendar and trying to anticipate how many weeks out I'll be ready to ask for rides grocery shopping or to see my therapist. If it's helpful to anyone else with an upcoming surgery, I'm using this website to organize meals and other needs: https://www.mealtrain.com/.

Five weeks from now at this time I'll be into my first (and hopefully only!) night in the ICU. For a surgery that's been a shadowy looming figure in my future for years, I've been struggling with this intermediate stage -- having a surgery that's still far enough away to not feel 'soon', When is it no longer too early to prepare? In 2008 I was told I'd need to have my pulmonary valve replaced in 5 to 10 years. Yearly ultrasounds, confirmed by a stress test and MRI, indicated steadily increasing leakage, a common problem for people who've undergone 'complete' repair for Tetrology of Fallot in infancy. This January I was told '5 to 10 years' was now but I couldn't be referred to the surgical conference until I'd had surgery for an unrelated infection. So I've been sitting on this anticipated late summer/ early fall OHS for almost 7 months, had more than enough time to experience and process the initial stages of shock, fear, hedonism, mourning, nihilism, and growing acceptance. Over the last half a year I've come to appreciate how optimally timed in my life this is (all things considering), excitement for my heart to work well for the first time in my life, and treat it as a chance for deep self-reflection. Now my surgery date suddenly feels close. My parents just booked plane tickets and lodging to fly out to Seattle to support me through my first number of days home from the hospital. I have a growing list of things to do before September 22: set up a care calendar/ meal train for recovery assistance needs, ask for help (this one's real hard for me), extend my health insurance, pay bills, move dishes and other essential items to places I can reach without reaching, take a short camping/ roadtrip, acquire a good back pillow, finish my advance directive, temporarily suspend my YMCA membership, catch up on emails, visit the dentist, fix my breaks, etc. I've spent the last couple months telling myself it's too soon to stress about surgery preparations. I'm pretty sure it's no longer too soon but that also means mentally and emotionally wrestling with the reality of surgery in a way I haven't had to yet. When did y'all start to put your affairs in order, so to speak?