Kelly's Posts

I agree with you 100% Kelly. Add to it that most of us are young, so no one ever thinks anything could be wrong with you, nor can modify their expectations of you. The looks and befuddlement you get when you tell people you have a heart problem, or have a heart surgery coming up, or HAD a heart surgery. Like you have to be 80 years old to need something like that... I have the most wonderful and supportive family, friends, coworkers, my wife came with me to NYC for surgery, and my brother and sister-in-law flew in from London to be with us, but still - it was a journey I had to walk alone. I had to turn my trust to God and look to find strength within... somehow... Leading up to surgery, I did a few things to try to build a story of resilience for myself. I fasted for 7 days a few weeks before surgery. I knew that the journey - the travel, the fear, the anxiety, the pain would be a challenge. I also knew that there is a silent fraternity of hundreds of thousands of people just like me that had walked those same steps. Doing an extended fast was something I did so I could say to myself in those hard moments "lots of people have heart surgery. Nobody goes for more than 15 minutes without eating. I can do this" I wouldn't recommend just jumping into that. Talk to your doctor. I've done quite a bit of fasting so I had good habits and my body was accustomed to the experience. I also chose my mindset. I decided that for every moment I was in that hospital I would be friendly, enthusiastic, and strong. Friendly - because I would need allies and sympathetic people (nurses ect) every step of the way who would hear me, trust me, and want good for me... and to move my focus off myself and onto others. Enthusiastic - that no matter how bad and how sad and how fearful I might feel, I was going to do everything asked of me with a spirit of enthusiasm - from pulling out catheters to walking a few steps to getting on the plane to go home. And strong - always remembering what I've already been through, and WHO is with me, no matter what's happening. It is a lonely journey. It's ok to feel alone, to feel sad, to feel fear. Just know you have a silent fraternity of suffering here. You aren't alone, even when you feel that way. Looks like your surgery is coming up fast. If there's anything at all I could do, please let me know. you're in a place where everyone understands at least some of what you're going through.

I hear you, Kelly. People ask me about my upcoming surgery but when I start to tell them it’s like they don’t want to hear or only superficially listen. It’s hard for me to strike a balance… give them enough info so they have an understanding but not too much. It is isolating. This group is where we can really talk, and listen.

So glad you found us Kelly❤️It does sometimes feel like you are all alone in this experience. It was wonderful for me to be able to connect with people here in Adam's blog site. I don't think people that don't have a heart valve or heart issue requiring continued monitoring and likely eventual surgery can truly fathom the emotional or physical challenges we face. My sister even asked me if I was still glad I had chosen to have surgery. I didn't know what to think about that, like she thought it was optional or elective surgery rather than allowing me to actually live to a normal life span. You can always express your thoughts, feelings and questions here and know you will be supported.

Thank you Matthew, Valerie and Grace! Matthew for sharing your beautiful perspective before, during and after your surgery! I too have a faith and a supportive team of family and friends but as you so kindly mentioned, “mindset is a choice” and a positive one so very necessary! I am so very grateful for this “silent fraternity of suffering” and support! Valerie, that’s exactly my observation! When I start to explain, the “superficial listening” kicks in. I am alway hoping they will ask questions so I can explain things better. Grace, I am so glad I found this sight too! It’s so true—the impression many have about our surgery being “optional.”I’ve tried to explain that I am on the fast track to heart failure and surgery will prevent it…. but it’s usually back to the “deer in headlights” reaction ha ha! Again, Many thanks to you all for the support!!!

Short story…a few fairly close friends asked about my surgery coming up and I started to explain, they seemed interested. All the sudden one changed the subject. I decided to gingerly push it a bit and said “wait, I’m not quite done” (I knew what I was doing) and she said “ You’re freaking us out!” I think fear plays a lot into others’ reactions. I usually don’t push it. 😞

Hi Kelly - Best of luck coming up. I hear you on the major learning curves in all of this and the disconnects of society and others to understand. When I explained things to family/friends, I numbered key points and that seemed to work well. Which procedure are you having at UC? I saw it said "bloodless" was not sure which surgical option you are having. Good luck