28/02/2024
I would like to say a quick thank you to all of you lovely people for your kindness and patience as I have been trying to juggle some pretty heavy things and new roles. I know I haven’t been the quickest to responding to messages, I have missed a few messages and I have had to reschedule more than I like, but I promise I want to help you and your pets as much as possible. I really love this aspect of my life and appreciate you all for being a part of it. ❤️ we are hoping a light at the end of the tunnel is coming soon, but until then feel free to ask any questions or message multiple times if you have not heard back, I will not be offended.
Thank you all again. ❤️
With love,
Katie 🐾
Today marks HCM awareness day. It seems to me like a good day to share my story.
To those that are finding out this way, I apologize. It's been a rough journey with so many uncertainties. But I feel like I am finallly on a good path.
First and foremost. Thank you to my family who has endured this journey with me. They are beyond sick of microwave meals and pizza. They have had to watch me struggle to walk across a room. They had to pick up the slack of meals and laundry (can't do stairs due to syncope- passing out and near passing out). And to the select few in the know, you have been a life line I cannot replace. Thank you from the bottom of my heart. Y'all know who you are!
And to our customers, thank you for embracing Katie taking on a bigger roll at the store. This has not been easy on her though I do think she enjoys learning all that it entails.
It's been about a year now that my symptoms have been so bad. I've always had PVCs (premature ventricular contractions) but they have been getting more frequent and more uncomfortable. Then I had a bout of AFIB and then another. And every time something new popped up I was shamed and told I was overacting. It was anxiety. It was no big deal. It was normal. I would bring up genetic testing my son (who has his own heart warrior journey story) had done and that I KNOW I am the one that passed it to him and even have proof. I would have strips off my Apple Watch of CONSTANT PVCs. I would have days and days of not being able to function. But would still have times that were normal. Finally I reached out to the HCMA and Lisa helped me out and got me on the right track. So then started my fight to get to a COE (Center of Excellence). Guess what? We happen to live in the same state of THE BEST one around. I think it took a couple more months to finally get it all lined up. And here's where I thank my brother and sister in law. They just happen to live close to Rochester and I stayed with them. And my brother was my taxi and support. Along with Katie or Todd who drove me (& Ben too for ER visits). I had full days of testing. Literally appointments all day long. Then another appointment with my cardiologist that specializes in my disease and more testing. Phone appointments. Video appointments. It's been a long road. And currently fighting insurance as I am trying to avoid open heart surgery to fix this but insurance is NOT cooperating but that is another lengthy post.
This past month or so has been a....well trying meds to appease the insurance that have totally messed with me including one where I couldn't get out of bed for over a week.
So. Now you all know. I have been diagnosed with HOCM, hypertrophic obstructive cardiomyopathy. My only relief is open heart surgery or a new to the market med that has been 85% successful. Either way means A LOT more trips to Mayo. And more put on my family. I apologize to all that I have not been there as much as I would like. Just know I am still here. Just in a different way. For instance, Todd went to thrift and took me along via FaceTime so I could pick still.
If you want more details, ask! We are all pretty exucated on this disease at this point. And yes indeed we are working with genetics to diagnose any of my other kids with this horrible disease.
❤️Sondra
