Andie’s urgent need for relief and comfort

My name's Andie Proskus. I'm 32 and live in a group home in Oregon for adults with disabilities. I have a neuromuscular disease, and when I was 17, I had an extensive spinal fusion to straighten my back due to kyphosis and weakness from my muscle disease. Surgery was successful, and I healed. Unfortunately, in 2016, I needed a cervical fusion which ultimately failed, resulting in hardware fracture and loose screws. Then, in 2018, I got a bacterial infection that got into all the hardware. Unfortunately, I have dealt with over 16 abscesses, many hospitalizations, and severe complications. Seven years later, I have 6 open wounds chronic down my spine, live in excruciating pain daily, and there's no cure as I'm not a surgery candidate.

For years, I was sleeping in a non-adjustable twin bed and got numerous pressure sores on my tailbone until I applied for an ADA van from the Chive Charities, who gives grants to those with rare diseases and veterans with medical needs, etc. Unfortunately, I didn’t get a van, but I added in that I also needed a medical bed. I wanted one, however, that didn’t look like a hospital bed. I found SonderCare in Canada, and their bed options were a twin or 48” wide by 80” long bed. They are fully electric and raise up and down, have tons of features, even going into a semi-chair position. These beds are around $8k in price. I needed a bigger size to have more room to change positions. I also needed to be able to raise the bed up and down for the nurses coming 3 times a week and caregivers to change my dressings and help reposition. Before getting approved for the bed, insurance would only have approved a basic hospital twin size bed that wasn’t even fully electric, and I needed more. With the bed, mattress, and some accessories, it came to over $10k. You can read my story here:

Chive Charities story

and also an article on the Today Show here:

Today Show article

At the time everything was approved and paid for, I didn’t know SonderCare had pressure alternating mattresses because they're not advertised. So, I went with their pressure redistribution mattress, thinking it would be okay, only to realize when it was too late that my back and body, due to the wounds, really need the alternating pressure mattress. Well, it was too late, and so I've been using a twin size pressure pad from Amazon that isn’t the size of my bed and slides around as there's 4 inches of bed on each side. This isn’t ideal. Well, the company SonderCare sells the pressure mattress from Blue Chip Medical. Due to the special sizing of my bed, the mattress has to be 48” by 80” to work with the bed frame. They sell it out of pocket for around $4,000, maybe even closer to $5,000. It's called the Adapt Pro Elite, and the 48” wide would be the size I need. In an attempt to get insurance approval, they claim that it wouldn’t be approved unless I had a basic hospital bed, not my donated one, and you have to have a pressure ulcer, which is different from open spinal wounds due to infection and abscesses. Which is crazy considering how much worse my situation is because all the wounds are deep and have hardware exposure and are open. I'm also at risk of developing pressure sores without the proper mattress. Those who know me know that I never ask for help; it's uncomfortable for me as I'm a giver. I've given back with my annual sock drive 11 years in a row, collecting new fun socks which I donate to sick kids in local hospitals, Ronald McDonald houses, and families in need in shelters to warm feet and bring smiles, thanks to the help of schools and friends yearly. I started this due to a pair I got in the hospital that brought me comfort, and I wanted to give back. It's therapeutic for me and keeps me fighting. I've done many more charity-type drives, etc. I never ask for help unless it's urgent and I have no other option. The reason this is urgent is because of the criticalness of my health situation and wounds down my spine, the pain, and inability to sleep and be comfortable, as well as the high risk of pressure sores and even more complications that could come about.

I'm always so grateful for anyone who can be of help in a time of need, of course, if you’re able to contribute, even if it's small. I only want comfort at this point with no cure, and to have that comfort, I need the right mattress for my bed that was recommended a long time back by a surgeon.

Thank you so much for being here and for your support.

-Andie