Is This Really Happening Again?

Is This Really Happening Again? This was Heart for Andrea &well, I've had 2 heart transplants since then and now I'm eventually going to need a 3rd, CAV is back. I'm changing this up a bit.

I'm going to use it more like a journal and hopefully provide insight into transplant life.

08/05/2025

Met with Missouri Health Commission to give my story to help prevent Medicaid cuts that could affect people like me!

08/04/2025

KU called back but apparently my email went to a general inbox. Thought it went to transplant team since I was on their page and it said reach out for a consultation with our team. 🤦‍♀️ Maybe that was meant to be bc...Honestly, I'm still too fearful to let my team know I still want a second opinion. I know this doesn't make sense to anyone and I can't explain it. I'm sure it has a lot to do with the fact that my ability to continue living is literally in their hands and I'm so afraid I'll get treated differently. Yes, I know they can't do that but what people think and actually do are two totally different things. Also I'm considering alternative medical treatment along with my current treatment. It's all so much to have to think about every day and impossible to not think about. Ugh. At the same time I have to keep stress in check. 🤦‍♀️ I am doing what I can. Have a fabulous week everyone and happy Monday!

07/25/2025

I contacted KU. Explained my situation and now I wait. 💜🙏🏻 💓

07/18/2025

No doctor appts yesterday or today!! 🎉 The place handling the medical records copying called me to verify if I really wanted hard copies, bc they said it's over 35k pages and I'll need help picking it up and maybe a truck. Sooooo, yeah that's not going to work. Long story short they're going to send PDF, which is what I wanted to begin with. But wow, 35k pages for a period of 15 years. I suppose that makes sense for as often as I go to the doc every month for the last 14 years.

07/12/2025

Got back from my trip on Thursday. Trip was amazing. I'm incredibly blessed with the best friends. We had so much fun. Back to reality now. Hoping to reach out to KU this week for second opinion even though I didn't have my medical records yet. Can't hurt to go see what they have to say and think about the current situation and what would their treatment plan be if I was their patient etc. Feels very scary to think about going to a new team. Anyways. Hope everyone is having a great weekend so far..ttyl!

Feeling alive and hopeful. Thank you Angela Joy. 🫶🏻🏝️🌅🐬🏖️💜🙏🏻🫀💪🏻🕊️
07/08/2025

Feeling alive and hopeful. Thank you Angela Joy. 🫶🏻🏝️🌅🐬🏖️💜🙏🏻🫀💪🏻🕊️

07/07/2025

Follow up on medical records. So I went. They said it was removed from my online account bc an error was discovered. 🤔 Long story short i requested a hard copy and was told it would take a while bc it's 8,000+ pages for the time period I requested. I have some time for now so no problem. Only able to get this done thanks to those of you that have helped so far. Thank you so very much for helping make this possible to get this journey started. 💜🙏🏻💓💪🏻

07/02/2025

So I think I'm going to start sharing all of this on my regular profile vs having 2 separate profiles. I have too much going on and don't need extra stress of one more thing to keep up with. So to keep it easy on myself from now on I'll post on my personal profile that is now public. Please follow me there.
I appreciate all of the love and support!! You can't have too much of that when going through traumatic health situation. Thank you all so much for the continued support!! 💜🙏🏻🕊️💪🏻🫀💓

Check out this insanity. So I got a text at 252pm that the records I requested were available yesterday. Then i got a te...
07/02/2025

Check out this insanity. So I got a text at 252pm that the records I requested were available yesterday. Then i got a text at 255pm that my records were no longer available. I was super busy yesterday figured it's a text glitch. Go to link this morning and no records. Seriously! What in the actual F!!!!! I have to get labs done at plaza location tomorrow so I guess I'm gonna go see records dept face to face. So ridiculous!!!

So excited that I have no dr appts tomorrow and don't have to do anything but be in my house!!! Might actually be able t...
07/02/2025

So excited that I have no dr appts tomorrow and don't have to do anything but be in my house!!! Might actually be able to get stuff done or maybe I'll have a lil self care day and binge watch something all damn day!!! 😆

06/30/2025

Good morning everyone!! Hope you all had a great weekend!! Have a couple Dr appts today and tomorrow and blood work today and tomorrow. Hopefully all goes well 🤞🏻 I'll keep you posted. Have a beautiful day!!!

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