Over the past few days I had the opportunity to sit down and chat with two former open heart surgery patients. One had an aortic valve replaced three years ago after having an undiagnosed murmur suddenly be heard at a doctor appointment. The second was born with EA and has lived a normal active life and had a tricuspid valve replaced at Mayo by Dr. Dearani a few months shy of two years ago. Both had small children at home and were in their mid-30’s.
I am so grateful for these connections because they were able to share with me many of the things I've been curious and concerned about and so much more.
They both had very specific memories from their recovery. Some good and some not so pleasant but their stories are real and gave me a glimpse into what I can anticipate. There were a lot of similarities between our three stories, but their experiences were individual and I expect mine to be as well.
I can’t lie. A lot of what they shared with me was frightening. As optimistic as I am trying to be, I know that there may be hiccups along the way and I think I’m a more mentally prepared for them now than I was before hearing their stories. Pray I don’t have some wacky complication that I’m not mentally prepared for.
They didn't sugar coat anything and I completely respect their honesty. They shared everything from pain to pooping and all the fun stuff in between. Both showed me their scars and were proud of them. Right On!
We covered a lot of area and below are a few things I want to make note of that stuck with me in the days following.
- Since my sternum will be broke to allow access to my heart and then wired shut to allow it to heal, a significant amount of my discomfort in the weeks following surgery will be from pain in my bones, muscles, & joints trying to support its healing.
- A-fib (Atrial fibrillation - I’m workin’ on learning all the lingo) hurts like crazy and if it can’t be controlled by meds a pacemaker may be needed. Yikes.
- Physical activity as simple as walking will be a challenge and I’ll have to re-condition my heart and muscles.
- Constipation. Nuff said
- Sleeping is going to suck for the first few weeks. I’ll have to sleep on my back either sitting up or propped up.
- Depression. I’d never heard this before but both people mentioned it. There is a link between cardiopulmonary bypass and depression. Noted. I can see how not being able to participate in daily activities like holding their child can really drag a person down too.
- My appetite may be non-existent for a while. One person lost weight while the other gained weight from all the fluids and meds.
- Weight and Driving restrictions – I won’t be able to lift anything over 5 lbs or drive for at least the first month. This includes CT AND a gallon of milk. I guess I need to downsize my purse, huh?
Thank you Eric and Lauren for sharing your journey with me and for being open and honest. Time will tell what my story will be.
I'm so glad you have found people to talk with that have been in your shoes and can help guide you on this journey. You are so amazing to be taking such an active role in your surgery and recovery. You.Are.Amazing. And in inspiration to me every day.
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What a great opportunity to get some info from others. Hopefully with more information you're feeling more prepared. You are such a strong person to be facing this! I am here for you whatever you need!
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