Bea 's Journal

I was diagnosed with Aortic valve regurgitation due to rheumatic heart disease when I was nine years old and officially had my first valve replacement in 2014 right after I turned 21. Recovery went well and I went back to my baseline no longer than 3 months afterwards; I even rode a big roller coaster for the very first time! Fast forward to late 2018 and I was unexpectedly diagnosed with Mitral valve prolapse. My aortic bioprosthetic valve was still in great shape so we opted to try a Mitraclip procedure in March of 2019 to buy me time as I was slowly getting more and more symptomatic. Unfortunately, I developed a complication during the procedure and in spite of my doctor's best efforts they had to withdraw. I ended up having to get my second open heart surgery two weeks after to replace both my Mitral and Aortic valves. I had expected and looked forward to the recovery and getting my old life back just as how it was after my first surgery. The surgery itself went well, but recovery had been a real struggle. This past year and a half I have had uncontrolled pain (both musculoskeletal and coronary vasospasm), palpitations and intermittent shortness of breath in addition to some occasional dizziness. I had been to the ER and urgent care multiple times, have been to physical therapy and started on several new medications to help combat my symptoms but I continue to have some bad days. Thankfully nowadays I have more good (symptoms are either nonexistent or very mild) than bad days. I have had to make several changes due to this longer than usual journey back to my baseline. I'm a registered nurse who works in a cardiac step down unit and I decided to go from working full time to part time in order to allow my sternotomy to recover for more days off in between shifts, as the physical demands of my job was taking its toll. Prior to my second surgery, I used to jog at least 10 miles a week, but also have since given up jogging in order to not exacerbate or trigger musculoskeletal pain. What's been even more frustrating is that even when I'm just relaxing and just either watching TV or reading a book I can get symptomatic out of the blue. We have done multiple tests and have done multiple lab works and everything pretty much comes back okay. My cardiologist has deduced that with my history, my symptoms could be related to dynamic left ventricular outflow tract obstruction. We continue to play around with my meds and hopefully get the right dosages and get the right cocktail for me, but we have come to the conclusion that it's highly likely that I won't be able to go back to my old baseline. I don't think of myself as a victim and I like to think that I'm a pretty resilient person who tries to look at things with optimistic realism, but this whole journey had not been easy. My priorities have shifted quite a bit and there are big plans that I had for myself that I feel are no longer great or smart options for me. Some of the biggest of these plans was my desire to have kids and go back to school and become a nurse practitioner. Then there's the reality of my bioprosthetic valves lasting a good 10-15 years if I'm lucky, and possibly needing a third surgery (if TAVR isn't an option for me then), which at this very moment I am against getting when the time comes. My biggest fear is to suffer in a hospital bed and would even love to have official documentation to be a DNR outside of the hospital (a conversation I have already had with my loved ones). With so many changes I had been becoming more and more frustrated and my mental health had been declining. I usually am able to cope well and reset when needed, but COVID didn't help at all in the matter. I had an existential crisis last week bad enough to file a short term leave from work. I have an incredible support system who I can depend on and have started to see a therapist to help me navigate my grief for my old life, old plans, and my overall limitations. My mental health is definitely better than last week and I'm slowly trying to get my mojo back by creating new goals for myself. I think it's helping a lot that now instead of being frustrated that recovery is taking so long, I am now letting myself grieve and accept that I, in spite of how much it sucks, won't be getting my old baseline back and will have to live with and do my best with my symptoms. Thank you for listening!