He said it all began with a constant feeling of fatigue, pain in his stomach, joints, and chest, and difficulty breathing. Then it became hard to keep any food down and he started vomiting blood. The weight loss and pale skin became noticeable to others within a short amount of time, and their assumptions and misjudgement based upon his appearances had led others to believe and gossip about him being a drug addict.
I hadn’t seen my brother in months.
I had a busy life as a single working mom with a teen and preteen to strive to set a good example for, living in a small town home I was barely able to afford. I was already struggling to make ends meet when I received a phone call from my employer who had seen my brother. She said he looked like death was upon him, and that I needed to take him to the emergency room as soon as possible.
I immediately made arrangements for my kids to go stay with their dad so that I could go get my brother, and I’ll never forget the feeling of dread that came over me when I saw him the day I picked him up. She wasn’t exaggerating because he could barely hold himself up and looked entirely emaciated!
We went straight to the emergency room at Barnes Jewish Medical Center, in St. Louis, Missouri, a hospital well known for giving people a fighting chance to recover. I held his hand and told him to hang in there during the drive and again while we waited in the e.r. Why didn’t he just take himself? He had taken himself to a few different emergency centers, where he was either diagnosed with pneumonia or bronchitis, but he still couldn’t keep any food down, and didn’t get any better with the treatment for either diagnosis, but instead kept worsening over time. Patients enduring fatal illnesses often need an advocate because they are in too much pain or just too ill to be able to advocate for themselves.
Above is a photo of my brother as I held his hand through his first round of chemotherapy. While it’s not a form of cancer, Vasculitis is an autoimmune disorder that is treated similar to those battling cancer. The combination of Rituximab and Prednisone were given to force the illness into remission. That treatment in 2014 was a success, but just like cancer can come back, so can this illness become active again and it has.
Below is an image of him receiving blood and IV fluids in the emergency room at Barnes in June of 2014. This was when we first learned that his kidneys were shutting down. It would be almost another week and a kidney biopsy later before we received the detrimental diagnosis. The silver lining in the cloud was that with an accurate diagnosis, the appropriate treatment could be implemented. As of this date there is no known cure for Wegener’s Granulomatosis, but “without treatment Wegener’s sufferers could die within a few months. ” – Wegener’s Disease.
The story of my brother’s life started out with him being a surprise for our parents.
I was barely a year old when our mother found out she was expecting him. She often told me that I was just a toddler myself always trying to hold him or carry him around. We didn’t always get along, as siblings will spat, but he was always genuinely sweet and generous even as a child, so his company hasn’t been so bad to keep, and his life is definitely worth fighting for.
I didn’t start this blog just to ask for help, though Lord knows we need it. The both of our parents are deceased and we don’t have a strong support system. Even after the illness was forced into remission and he started to feel and look better, the debts accrued from the financial cost of just being there at the hospital with him to advocate for him, transporting him from specialist to specialist, and covering the cost of his basic necessities are still weighing heavy on my shoulders.
I started writing this blog in hopes of helping others in the future who may find themselves enduring similar experiences, including with hitting one brick wall after another while trying to apply for the assistance programs available to low income and disabled individuals. I work full time, and we’re both still low income, but while he became disabled in 2014, he wasn’t granted disability assistance until 2018. The back pay received didn’t go back that far and so it didn’t put a dent into the debts we’ve been shouldering. The wait list for help is long for some programs, while other programs are currently closed to applicants.
I documented my brother’s first major hospitalization with photos I had uploaded to an album on Facebook. Some of them will also be posted on this blog about his battle, not only about surviving with Vasculitis, but also the complications that have arisen from it. I intend to make new posts and built and began to work on this site specifically for sharing the experiences of his life through my eyes as a witness.
Should you be in a position to assist, please consider the ways in which you can do so. When I don’t work at my day job to take care of us, I work online by writing on websites like this blog, sharing affiliate links as advertisements that enable me to earn a commission for any purchases made from any affiliate link, such as the “Bablic” image and link below. The way it works is, if a website visitor clicks the link and goes to the website of the name brand in the advertisement and chooses to make a purchase, I will earn a small commission without any additional cost to them. This is my disclosure statement. Bablic is a global website translation tool.
Another way you can assist is by clicking here to send a direct payment to my paypal account or by the Go Fund Me page I set up. I know this is long shot, but there’s no time to waste and I’m trying to apply every possible solution I can come up with to do something useful. If my faith were great enough that I could heal people just by sheer will, I would have already healed my brother and everyone else in need of it. We need to raise about $11,000 to get ourselves financially on track and to secure a home where I can take proper care of him. Thank you for listening! Your time and consideration is genuinely appreciated.
Update: I’m sad to announce, Nick lost the battle against a triple infection after a long hard fought war with an aggressive form of vasculitis on January 15th 2023.
CLICK HERE for Eulogy and Memorial information
If you can assist with ensuring Nick’s final wishes are granted, your contributions are sincerely appreciated.
Surviving Vasculitis 