Angie Faye Burnett Medical Expenses

New post with update as of February 2024:

Angela posted an update video on Facebook which she made public this past week. That can be viewed here:

https://www.facebook.com/share/v/i8D1p3CzYH2vd94m/?mibextid=KsPBc6

Angie's health condition has steadily declined over the last 12 months. Through ongoing doctor visits with specialists, it was determined that Angie has Dysautonomia (which is a dysfunction of the nerves that regulate non voluntary body function) which is the root cause for all of the ailments she has been diagnosed with over the last 2 years.... Gastroparesis, Pelvic Floor Dysfunction, Neurogenic Bladder, Ventricular Tachycardia, POTS Syndrome, 100% hearing loss in her one ear... and so much more.

In the fall of 2023 Angie was approved for disability and it was a blessing and a curse. Once she was put on disability, she benefits that she was getting such as her EBT card. Also, her Medicaid changed where she has to pay more out of pocket, like a deductible, which being on a restricted disability amount, is very hard to afford the medical services she needs, such as her aid. To get her aid for February, she has to pay $1024 to care advantage.

Managing these illnesses in our broken healthcare system has been awful for Angie, to say the least. She has gone in to get a TPN (which IV nutrition) port placed in both her chest and her arm several times and they are constantly getting infected and it is incredibly painful. The lack of nutrition along with her other ailments has made her a fall risk, which happens to her quite often, where she will collapse - which is a big reason why she has a full time aid that helps her.

In December of 2023, Angie made the difficult decision to go into hospice care, to provide her with the comfort care. Being on hospice allows her to get on medications to help her manage her pain levels and make her comfortable. Being on hospice, you are no longer in the doctor rotation, there are no more tests and no more treatments, it's all about comfort and quality of life.

At the end of January of 2024, Angie found out that she was no longer able to be in hospice care due to gaining weight (which is has been caused not by food or nutrition, but by fluid build up in her stomach and body from medications she has been put on). She was placed into hospice under the umbrella of malnutrition and the powers at be think the higher scale number means that she is not suffering from that anymore - which is so unbelievably infuriating, but I will save that rant for another day. What this means is, the medication she has been on that has managing her pain and making her comfortable, they are taking away and she now has to go back into rotation of doctor visits and dealing with the incredible amount if pain she is constantly in.

Lastly, her living situation has unexpectedly changed and she can longer reside in her tiny house that she has been at the last couple years. She has been approved for an apartment and has started the process of getting ready to move. Of course, the apartment rent and the out of pocket expenses related to medicaid will eat up her disability allowance, leaving her with VERY little.

Seeing her having to constantly battle these illnesses, struggling with pain, while fighting our broken healthcare system, all while trying to stay mentally strong, has been absolutely heartbreaking. The only thing we can do is continue to support her in whichever way we can, whether sending a positive note, being by her side, getting her out of the house, sharing a funny video or even donating some money if you are able. You do not know how much it means to her and to those her love her.

I have adjusted the goal for this fundraiser to $16,000 in hopes we can get some more to help support for Angela.

Thank you for listening to her story and if you have any questions, feel free to reach out.

Much Love,

Teresa

Original Post from Feb 2023 - Which helped us get to our first goal of $10K:

Our dearest daughter, sister, cousin, niece, friend and colleague Angie Burnett has been struggling for the last 18 months with the devasting diagnosis of a rare disease called Gastroparesis which affects her G.I. system. The symptoms started in August of 2021, when she thought she had food poisoning when in fact she was in the beginning stages of this terrible disease. Her particular condition is severe as she has lost total motility of her G.I. system. They don't know exactly what caused it, but they are thinking it is an autoimmune response that was caused by a virus.

She cannot eat anything, as her body cannot move the substance through her system. This causes severe stomach pain, vomiting, nausea and stomach blockages. She has a tube in her stomach to help drain contents (because although you're not eating, your body still produces bile) and she has a TPN in her arm to feed her nutrients to keep her alive. The TPN is extremely painful and has caused some tachycardia issues with her heart.

Throughout the last several months, her situation has become even more complicated as it appears the issues she has with her G.I. system, are now happening in other areas. She has just been diagnosed with total pelvic floor dysfunction as in motility loss in her bladder, colon and rectum.

Angie has been working with a team of doctors to help determine the autoimmune disease that is causing this so they can begin to figure out the best treatment option for her. There is no cure. But we have hope that there are options out there and they are continually exploring what those are.

Needless to say, this all has taken quite a toll - physically and emotionally - on our girl. She is weak and tired. She cannot work (in the apartment industry that she loves) and is on disability. She can't drive, often taking Ubers to doctor appointments and relying on friends to help get her to and from. She is on Medicaid and has lost doctors/specialists along the way because she couldn’t afford Cobra. With Medicaid, only in-state hospitals take it which limits her from being able to travel to real Gastroparesis clinics. She also had to give up her apartment because she can’t go upstairs due to her blood pressure dropping. Medical expenses are adding up and she is looking at possible treatment programs out there (mayo clinic...etc) in other states that can help get her some relief and answers. She is also seeking emotional support treatment, as this has taken a toll on her mental health.

So many people have reached out about what can they do or if there is some type of funding set up. Well, Debby Eure and I have decided it is time, she needs support more than ever to help her get through this.

ANY amount will help. Even if it is just $1 - that can help go toward an uber to her next appointment. If you have any questions, please reach out to me or Debby. We are in close contact with Angie and can answer any questions you may have.

Much love,

Teresa Starkey & Debby Eure