Support Elizabeth's Fight Against Rare Heart Condition

My name is Elizabeth. A lot of you know me as Adyla but I’ve come here to explain my health issues.

Ive had heart issues since I was 6 days old. This is nothing new for me. Ive had several heart surgeries. Lead replacements. The list goes on. This specific issue though has never happened to me before. My Drs say my case is very rare. Which is why it’s so hard to help me.

superior vena cava syndrome.

I’ve been dealing with symptoms since May. I had fist noticed my hands turning purple and blue along with my lips and knees after I’d shower. Doesn’t matter what temperature the water is. Everytime I turn blue and purple and almost pass out. Shortly after these symptoms I started to notice my neck swelling along with my entire face. Especially my eyes. Some days I wouldn’t be able to open my eyes. Fast forward to July and I fly back from LA to my home in STL because I’m profusely puking for 5 days straight. Passing out. I was in the ER my entire last week in LA due to these symptoms. Not being able to keep any food or liquid down for 5 days. The list goes on. So I randomly flew back to STL leaving almost all my stuff in LA on a whim because I didn’t have time to sort things out. I knew I had to go back home asap because something wasn’t right.

I got an appointment with Barnes Jewish Hospital which is where I always go for my pacemaker surgeries and such. They decide to recommend me to interventional radiology for CT scans and further testing. Grateful for the Drs at Barnes. They were able to find out the issue immediately with a CT scan. They say my veins are thinning. They said a bunch of other things but honestly it’s hard to remember the big words Drs say to me when I’m already listening to other things that are stressing me out. I have my my chart medical records I’ll be posting to give you all an understanding of what’s going on.

they decided to do an angioplasty October 10th in hopes to clear my veins and expand them for better circulation into my heart. Sadly they said they were unable to work on the left side which is the side of my pacemaker. They said it was too dangerous and they didn’t want to risk anything. Perfectly understandable I was grateful they didn’t take the risk. They had told me I’d need these for the rest of my life considering I can’t get a heart stint due to the type of pacemaker I have. A heart stint would fix everything but sadly I am unable to get that. Impossible. So knowing that I’d need these for the rest of my life was hard. But I was okay with that. They had told me this angioplasty should help me for at least 2 years. It lasted maybe a month and my symptoms immediately came back. My face is still swelling in excruciating pain. Along with my neck. My left breast is purple and blue from the veins and in a lot of pain as well. My left arm will go limp at random which is quite scary. So noting all these symptoms and chatting them daily. I called my heart surgeon at Barnes to explain to her this issues at hand. She immediately said we need to schedule me another angioplasty. No appointments in between just straight to it. I was excited to know that they are taking me serious and not wasting any time. Very grateful for the hard work these Drs put in towards my life ❤️‍

so I get scheduled for another angioplasty but with a bigger balloon in hopes to open my left side and clear up some issues and veins. I was hopeful and excited to wake up with a better heart and body.

when I woke up they had explained how they spent over 4 hours trying to help and reach my left side. They said it was too risky. My pacemaker wires kept moving and they didn’t want to damage my battery. Which makes my heart function. I was really upset I won’t lie. Very discouraging. But at the end of the day I will always be grateful that these Drs are doing what they can while also not being selfish risking my life in hopes to help me. They told me that Barnes cannot help me or fix this issues. I was really upset because this is the only hospital I’ve known my entire life. Along with St Louis children’s hospital. So as scared and confused as I am I had asked them what to do from here. Reality is I can’t live with this forever. My health is slowly shutting down and I physically do not have a lot of energy for much. I’m trying my best and I’m staying hopeful. I know I’ll find answers.

im healing from this recent angioplasty still.

fast forward to the new year and i get a call with lists of hospitals i am recommended to go try from my heart surgeon. One of them was Mayo Clinic. So many propel have told me this is an amazing facility and I should try everything I can to be seen by them. So that’s exactly what im doing. I decided to call Mayo Clinic in Arizona today. Everything was going great. They accepted me. Said I could be seen within a week asap! That’s exactly what I needed to hear ! They then proceed to ask about insurance. I have meridian. I have gvt insurance. I don’t make a lot of money and not only that I don’t have family to fall back on during times like this. They told me my insurance does not cover anything. So I told them if I have to I’ll pay out of pocket. Reality is that this is my life. So if I have to I will. Any of you would do the same for yourself ❤️

they told me to even be seen or to even make an appointment I’d have to pay 5 grand up front. 5,000 dollars. As a cushion fee to cover the appointment and any treatment after. If I don’t go through with treatment they give me the deposit back. Anyone that knows me knows I’m not rich. I do not have that money to just pull out for health reasons. As much as I wish I did have this luxury and opportunity I don’t. This is the ONE hospital that could potentially Save my life and help me. On top of 5 grand up front I have to pay for any other testing. Along with any procedures they do.

Ive never been one to ask for help nor did I even want to really make this. I feel selfish in a sense even though I shouldn’t. But im scared. I don’t really know what to do at this point or who to reach out to. If you could just share this even. I’d be so grateful. Idc if you donate. And if you do it doesn’t have to be much. Even just a dollar. I know it sounds silly but this is the one time you’ll ever see me crying out for help on the media. I’m being very vulnerable with this right now. Just please take the time to read this and understand what I’m going through. I’m only 23. I have so many dreams and goals in life. I have so much to live for still and to do. Weddings to go to. My own family to make. I want a happy healthy life. I’m very hopeful that I will get the answers I need. I really do appreciate the love and support. I appreciate the time you all take out of your days to check in on me and make sure I’m okay. The love is showing and I feel it ❤️‍ thank you all for everything again and please if you can just send me good thoughts and prayers. Love Elizabeth

Update: Barnes had reached out to me recently around the beginning of February. They want to see me the 18th of February to possibly discuss a procedure that would prevent me from having to go all the way to Arizona for treatment. I’ll still have medical bills but not nearly as much as Arizona. I also won’t have to pay for an entire surgery out of pocket. Which is nearly impossible. I’m very grateful to receive this news because Arizona wasn’t a for sure fix. Of course if they could resolve the issue I’d take it but they haven’t seen me before. So it’s all new to me and would take time for them to diagnose me and give me treatment. 

The plan is to take out the current pacemaker I have that has two leads connected to my heart. Take all of that out and give me an entire new pacemaker that has no leads. This will then allow them to place a stint in my heart. Which will then resolve the issue completely! 

I really hope this can be an option. Because a stint will fix me entirely. No more angioplasty’s. I’d be able to rest and heal. If we go through with this I will have to heal and see how I function with the new pacemaker. I’ve never had this type of pacemaker before so I’m a bit nervous. After I heal from the new pacemaker replacement they will decide to schedule the heart stint. So as of now it’s up in the air until I see them the 18th. Please keep sending good thoughts and wishes and pray❤️ I really appreciate the support and love I’ve received so far. I really do feel blessed. If I go through with Barnes I’ll be reducing the GoFundMe since I won’t need to reach such a big goal, thank you all again for everything ❤️