Help Bassett's During Fight with Rare Disease

 
It was just another spring day in April, but something was not right, Steven was experiencing stomach pain and his seasonal allergies were beginning to feel like it just became an infection.  After an appointment with his PCP doctor, he was given treatment with prescriptions for a sinus infection and swelling in and around the stomach area. Things took a turn for the worst very quickly, he had a fever along with a headache and intense pain & pressure in the stomach, he was advised by his doctor to head straight to the hospital.  When he went into the ER, they performed a Paracentesis procedure to remove 4 liters of fluid from his abdominal region and the following ultra-sound showed the liver and gall bladder were irritated.  He was then admitted due to the shock that the body felt after the procedure, doctors then began a series of tests, to include: Ct scans, ultra-sounds, bloodwork & panels, and an MRCP.  They were not yet sure what had caused this fluid buildup but were going to continue the tests until they found a catalyst that they believed caused this illness.

The next day Steven experienced swelling in his arms from the hands to the elbows and what looked like a rash starting on the front of his ankles.  Little did he or the doctors know that something worse was about to rear its ugly face that would change their treatment plan and ultimately, the Bassett family's life dramatically.  The following day the rash was spreading quickly, the fluid then moved from his arms to his face, causing swelling in different areas of his face over the next 2 days.  Moreover, the rash progressed upward from the feet to the hips and the swelling had now moved in all throughout his legs.  The doctors had no idea what it was at this point, so they had a biopsy culture taken to determine exactly what it might be.  The results came back positive for Leukocytoclastic Vasculitis, which is a rare autoimmune disease that causes inflammation of the blood vessels & can restrict blood flow in them & produce damage to vital organs and in some cases, it may even become fatal.  This was certainly no rash; it was blood building up under the skin due to the blood vessels bursting and breaking open.  They created small blisters called purpura and they also came in large patches called lesions.  This rare disease called Vasculitis continued to get worse over the next few weeks while he was admitted in the GI section of the Novant hospital. 

After a couple of weeks of the Vasculitis wounds taking off and spreading like a bad case of Poison Ivy, it generated an intense pain that constantly changed in nature, for instance, it would at one time burn & throb and then it would begin to feel like a belt of needles was wrapped around piercing the feet as it was twisted into the top of the feet and lower ankles.  Not able to walk without assistance, he was transported by wheelchair or bed to every test & procedure.  Even as the wounds were requiring gauze wrap dressings that needed frequent changing due to the constant drainage, he would joke with the staff and would keep a cheerful attitude along with the nurses to make the day go by more easily, when at times he truly understood what torture may have been like.  Every test performed on the legs; every leg wound dressing change came with its own distinct agonizing pain.  The pain lingered very consistently between an 8 to 10 on the 10-point pain scale all of the day and night, making it exceedingly difficult to sleep or get comfortable at all. 

There was a particular infectious disease doctor that took notice of Steven’s unique case, having so many symptoms he decided to have another biopsy culture taken to determine if IgA (formerly known as HSP) Vasculitis was present as well.  He was correct, Steven had both LCV and IgA Vasculitis at the same time, now making it a more rare and unique matter.  Despite the pain and the fact that the doctors were at a loss as to how this even began, Steven and his family worked to stay positive and strong throughout this rigorous journey they were now on.  All this time, neither Steven nor Julie was able to work due to the circumstances, adding daily to their financial burdens that were now beginning to add up. 

Since none of the Bassett boys were 18 years of age, they were not allowed into the hospital to see their father and without a babysitter present for the boys, Julie could not visit either.  When Julie was discussing the situation with Steven’s mom, Wendi, she decided to take an Emergency Family Leave Act with no paycheck from her job down in Florida and to travel up to help the family in their time of need.  Upon her arrival, Wendi and Julie were able to take turns in shifts between visiting Steven in the hospital and watching the boys.  His sons could not visit, nor did they all fully understand why dad wasn’t back yet, they would ask, "when is Daddy coming home, when can we see him?".  This is a tough one for them to understand.

• Above: Black skin layer (like a very thick scab)  Nerve ends still attached causing severe pain when skin became loose.

• Below: Biopsy taken on right forearm.

Finally, after over 4 weeks at Novant, the MD and the Rheumatologist decided unanimously that Steven needed to be transferred to Wake Forest Baptist Hospital because they had more specialists and resources on site for this type of rare disease.  After a week under the care of Wake Forest, Steven was discharged, & it was now May 25th.  Upon exiting the inpatient system, he now was going to multiple outpatient appointments with specialists & now had to purchase his own durable medical equipment and materials for the care that was required and necessary for proper healing.  One of the treatment methods were the Unna Boot Dressings to assist in the healing process for the internal & external skin wounds as well as for the nerves.  Also, the PT doctor requires Lymphedema treatment, which involves bandage material and leg dressings for Lymphatic Fluid Compression Dressings (Casts) that address and resolve the swelling in the feet & the legs.  A bit of good news, Steven is out of the hospital's care and home with his sons, they were reunited with their father for the first time since April 19th.

• Above:  the loose black skin that looked like a scab had fallen off & you can see the granulation tissue & where the nerve ends had been attached to the outer layer of skin.

The Bassett's had been saving up for a newer vehicle and they were still catching up & recovering from the pandemic in 2020 when Steven, like many, was without work for some time.  The financial burden has grown from April 19th to the present.  Although the Bassett's have worked hard to remain positive and not let this situation define their response to it as well as being strong, optimistic & upbeat; the Bassett’s still need help! 

• Above: Lymphedema Compression wrap dressings (Temporary Casts) & medical boots.

•  Below: Where the purpura 1st began, skin Biopsy was taken on the shin up closer toward the knee on the bottom of this photo.

We respectfully extend our request for prayers & humbly ask for any donation in support of this fight to overcome the rare diseases’ impact on us financially as a family of 6 and the setbacks that have been sustained, for example:  we have to pay for the medical materials, equipment, and services rendered that health insurance will not cover as these medical bills keep on coming in, & recovering lost wages due to the fact that neither Steven nor Julie are able to work until the healing process is complete.  Any and every little bit counts.  We want to thank you and let you know how much that we appreciate your generosity in advance.

• Below: Some of the scabs were coming off upon loosing of the nerve ends, if they needed to be removed manually, the scab was pulled out away from the leg and the flesh underneath would need to be cut to avoid possibly getting stuck or caught on something & causing more pain than what was experienced during the cutting of the flesh & nerve ends.

• Below: A drawing of Garfield on the white board to cheer up the nurses with a laugh & encouraging words to help the day flow more smoothly.

• Yesterday is the PAST, Tomorrow is the FUTURE, However, Today is a GIFT, & that is why it is called the PRESENT