Health insurance, medical expenses, closure

Hello Everyone,

My name is Dijonasse Lofton and I am 24 years old. I would like to say up until last year I was fairly healthy in the sense of most young adults. I was able to work, hangout with friends and family, drive, and just live my life to the full extent. But it all changed so quickly for me to the point I am not able to do any of those things anymore.

Everyday tasks started to become such a struggle for me, and like most women I just brushed it off. I started having problems with my breathing, I was easily winded and started to wheeze a lot more than usual. I started experiencing heart palpitations, chest pain, fast heart rate, high blood pressure, low blood pressure, bradycardia, and presyncope in a matter of months. At the time I was working at an animal hospital that caused me to be on my feet all day and to move around a lot. My job started to get really hard with these symptoms. I wasn’t able to do much without over exerting myself and feeling dizzy to the point I was falling into walls from nearly passing out. I was always exhausted, I couldn’t go a day without coffee or energy drinks or even a nap. No matter how much sleep I got, I still ended up tired. One day I was driving home from work and I just couldn’t breathe, my chest hurt, my heart was racing, and I had pains shooting all throughout my back. I decided to go to the nearest urgent care to make sure everything was okay. That visit to urgent care was the start of my health journey. That day I was told to see a cardiologist just to make sure everything with my heart was okay because my ekg came back abnormal.

A few weeks later I went in for my first appointment with the cardiologist. The appointment was pretty fast and she was very dismissive of my symptoms. She kept telling me that I was young and that maybe something else was the issue. I felt a little discouraged because I felt as if she wasn’t really hearing me. But she said that we will run some tests just to make sure everything was okay. It took about ⅔ months for me to get all the testing done. I did an echocardiogram, holter monitor, stress test, echocardiogram with saline, ct scan, and etc. All of my tests came back abnormal and my cardiologist noticed that I had an ASD(atrial septal defect), right to left cardiac shunt, irregular heartbeat, and paroxysmal supraventricular tachycardia, regular tachycardia, and bradycardia, and enlarging of the right side of my heart. My cardiologist believed the hole in my heart (PFO) patent foramen ovale was the root to most of my current health issues and she recommended closure. She was so hopeful that the closure would resolve a lot of my issues, and sent me to a specialist who specializes in ASD’S (PFO’S). It took about a month for me to get in to see the specialist, in that time I was hopeful and set on the fact that he will help me. But I was wrong, my appointment was very short and I was dismissed for the whole 15 minutes of the appointment. I was told he can not help me and that everything I was experiencing was from something else. I was distraught and disappointed because I went through all this testing and thought we came to a solution just to be let down. About a few weeks later I started passing out with convulsion multiple times a day with any type of exertion on my body. I ended up getting admitted into the hospital last year in April for seizure-like activity and high heart rate, with high blood pressure. Let's just say that was the first of many hospital stays and at every stay I was told how interesting my case was. At the time they believed I was possibly dealing with epilepsy, but they were wrong. When I would pass out my heart rate would shoot up to 170 and my body would convulse but my brain activity was perfectly fine. The neurologist that was handling my care told me she was sure whatever I was dealing with was heart related and she was sure my (PFO) had something to do with it. After I was released I was so drained and I was on a ton of meds with a lot of different side effects that were so hard to handle. It was hard to keep an appetite, I was so fatigued, I had to be watched at all times because I was constantly passing out, and etc.

Within those next few months we were at a loss, I was not getting the help I needed here in Vegas instead I was running in circles with different doctors. My family recommended I see an Interventional Cardiologist in Wisconsin since we weren’t getting much help here in Vegas so we decided to go. That’s when I realized that things were a lot more serious for me. For context I’ve always traveled by plane since I was a kid so I did not expect flying to be a problem. I was so wrong, I passed out the whole flight, I couldn’t breathe, and was extremely dizzy the whole time. As soon as we landed we went to the ER, I ended up staying in the hospital for about ⅘ days with still no actual real answers. I eventually was able to get in to see the interventional cardiologist and she told me that believed my issues were due to the PFO. She specialized in ASD’S and recommended closure. She also believed that it was more than just one hole and believed that I would need open heart surgery. It was actually scary and shocking to hear all of that, but I was also relieved because she gave me the answers that I needed. She wanted to help me and get everything settled for me but I ran into an insurance problem. I wasn’t able to stay longer or get the surgery done because my insurance would not cover it, so I went back home to Vegas to see if there was anyone else that could help me. As time went on I was still struggling and starting to lose hope, I didn’t know what to do anymore. I was without a job, insurance was way too expensive for me to afford. I wasn't even able to keep up with my own bills and my health was not getting any better.

In January of this year I was able to see a new cardiologist at the heart association that we came across through google and I was so sure this was going to be it. He told me how he dealt with patients younger than me that also had the same exact symptoms as me. He told me once they got the closure device they were able to go back to living their normal life. I had hope that I would be next. He scheduled surgery for January 7, 2022, I was so excited thinking this would be my year. This would be the time I wouldn’t take life for granted anymore, and this would be the start of my new journey in life to go for everything I want in life plus more. Just for me to get a call from the insurance company a few days before surgery saying that it was denied. I was not able to get the surgery unless I had proof of a stroke. Which I did not, when having a (PFO) you are more prone to having a stroke when a blood clot enters through the hole and makes its way up to your brain. Most of the time when people get closure devices for their PFO it is to prevent the chances of having a stroke. As a 24 year old black woman, it scares me that I have to wait for something like that to happen to me in order to get closure. Why can’t I just prevent it from happening to me now, strokes are very serious and sometimes deadly. PFO’s affect everyone differently. The majority of the doctors I’ve seen in Vegas told me that PFO’s do not cause any symptoms. But there are doctors who state that PFO’s can be very symptomatic in some people. We do not all fit in one box, especially health wise and that’s what most of these doctors were doing, fitting me in one box and leaving me to suffer. Still till this day they are doing research on PFO’s and the correlation it has to different conditions.

So far in the year of 2022, I’ve been admitted into the hospital 3 times. But 1 of those times were very scary and life changing for me. I was admitted into the hospital for several days for a mini stroke. I woke up one Sunday in February feeling so uneasy but I didn’t know why, and eventually it hit me. I kept going in and out of consciousness, my mom demanded we go to the hospital. As we sat in the waiting room I just knew that I wasn’t going to be able to sit there long. I started convulsing and next thing you know I was in the back in a bed not able to speak and moaning and agony. I remember feeling my left eye start to droop right along with my mouth, I couldn't move, my body went numb and I just felt my eyes watering. I was so scared and the fact I couldn’t speak scared me more. This lasted for about 30 minutes I would say and eventually I started to feel better. I was in the hospital for 5 days, the majority of the time bedridden. When I wasn’t in bed they had me doing orthostatic vitals, that's when they check your blood pressure and heart rate when lying down, sitting up, and standing up to see if there's a change in either. The first day I did orthostatic vitals I passed out when standing and my blood pressure and heart rate kept increasing. But the second day I was not prepared for, when upon standing for the vitals I remember telling the nurse I couldn’t stand any longer and that I was going to pass out. The next thing I know everything went black, I don’t know how long I was unconscious for but when I woke up the room was full of doctors and a lifeline cart. I came out gasping for air, they called a code they thought they were going to lose me. At that moment I was terrified because doctors here in Vegas kept telling me whatever I was dealing with was not serious but a mystery. But what was that? Why did that happen to me? I still never got answers from that day on, and I’ve been on edge ever since because what if that happens again and no ones there to help me.

Last month I was recommended to see a doctor that specializes in ASD’S in Tucson Arizona. His name is Dr.Waggoner I don’t have the money or insurance to get in to see him. So far I’ve done a few phone visits but he wants to see me in person so that we can get everything set and stone. I am in a few support groups that are dedicated to people with PFO’s and Dr. Waggoner gets nothing but praise in these groups. He’s helped change so many peoples life with his work and research and I hope to be next.

I know this has been a really long story to read, but I wanted to give you guys a little insight on what my life has been like this past year. I’ve been struggling and trying to maneuver my way through this new illness that has taken over my life. Not only has this impacted my life but it has also taken a toll on the people I love. This is not the life I expected and it sucks when you can’t get the help you desperately need when the health system keeps failing you. Anything would help and would be greatly appreciated. Thank you all for taking the time out to listen to my story. Please send lots of healing and prayers my way thankyou.