About Me (In My Own Words)
Note: I had an atypical time after surgery. But, if it helps even one person, then sharing my story will be worth it.
I was diagnosed with a bicuspid aortic valve about 8 years ago or so. A couple of years ago, my cardiologist told me there was significant stenosis but since I wasn’t symptomatic, we didn’t need to do anything. He retired December 2016 and wanted me to have a repeat echo in six months because he was concerned about the stenosis. I guess the confusion of his retirement prevented me from getting that note.
I met my new cardiologist November, 2017 after I had the usual annual tests. I had been noticing some tiredness when walking the dog and hindsight tells me I was sleeping and napping a lot more than usual. My new cardiologist hated to give me such dramatic news at first meeting, but told me I needed to have my aortic valve replaced.
My husband and I met with the surgeon the next week after a couple more tests. He told me with the severe stenosis, I could expect only a couple of years before it failed. Scary, scary news! Wonderful guy, great manner. He made us both feel very comfortable with him. He wanted to do the surgery within the next three months so I decided to wait until after Christmas since my family was visiting. I cut it close; after surgery he told my husband I probably only had a few months, at best, before my heart would have given out on me.
What a disaster! For the first time ever, I didn’t make Christmas dinner in my own home. My oldest daughter and husband did it all while I slept. It really underscored my need for surgery.
January 26 was the day. I don’t even remember getting to the hospital now. My first memory is a few days after surgery, being confused. I couldn’t breath well, nurses were having problems getting IVs in me (not unusual for me) and I just didn’t feel well. The first day I really remember is the Thursday after my Friday surgery. Apparently, I went downhill Thursday night and was re-incubated on Friday and my husband was told I had ARDS. I read up (afterward) on ARDS and that’s a scary thing to have. But, I guess being in the Heart ICU already and getting such a quick diagnosis helped me get quick treatment
I was off the vent again two days later and slowly started to recover. After 11 days in the Heart ICU, they released me to the Cardiac floor. I wasn’t feeling too bad then. Loads of meds, including pain pills, but making notable improvement each day. I was advised to walk, so I did. First time with a walker, but I didn’t need it after that first walk. I was having a problem with my oxygen stats, a result of the ARDS, so I continued to be on oxygen even after release from the hospital.
I surprised the nurses with how much I was walking but no one mentioned that I shouldn’t walk all the way around the floor, so I did. After three days in the Cardiac unit, my surgeon decided I needed a chance of scenery and released me. I’ve never been so happy to be home!
About ten days after being home, I caught the flu. The only places I’d been were my cardiac doctors office and my family doctor, so I picked it up in one of their offices. My home nurse called to make an appointment for the next day, heard how bad I sounded and came over right away. I ended up in urgent care that night. Thank goodness for Tamiflu. It really helped get me through the flu so I could get back to recovering from heart surgery!
They arranged for Home Health to visit me as well as a Physical Therapist to help get me ready for cardiac rehab during the first few weeks out of the hospital. Yesterday was my last PT visit and she was very pleased with how I did. My last nurse visit will be today. It was nice knowing people were checking on me, even if I didn’t always feel like seeing them. My three kids took turns visiting for a week each (they all live out of state) to cook, clean, drive, etc. so it was nice having them around.
Today I am just a month post op. Still sore but better than a couple of weeks ago. I’ve been sleeping in a recliner and last night I slept in my bed for the first time. What a mistake. Just too early for that, I think. I woke up very sore along my neck, shoulders, back and my incision hurt. None of those had been much of a problem. So, I think the bed will have to wait for a bit yet.
Cardiac rehab starts next week and I think I’m looking forward to it. I haven’t had any days that I would call depressing, but I have had just tired days. I’m hoping rehab will help.
I’m finally able to spend time on my computer; it’s important me and something I did a lot of. I can read a bit, although it’s hard. I’ve always been an avid reader and apparently after the heart surgery I had something called Pumphead, a cognitive disorder believed to be the result of being on a heart/lung machine. That’s still causing me some problems with reading and spelling but I can see improvements.
Overall, I think I’m doing ok for a month post op. I’m looking forward to steadily improving, getting some energy back and just being able to live my life again.
More Info About Me & My Heart
More About Me
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I am from:
Chicago
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My surgery date is:
January 26, 2018
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I was diagnosed with:
Aortic Stenosis
Bicuspid Aortic Valve
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My surgery was:
Aortic Valve Replacement
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My surgeon is:
Dr. Bryan Foy
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My hospital is:
Edwards Elmhurst Heart Hospital
