The Unknown

Hi, my name is Tommy and I'm fundraising for my wife Janet, and please let me tell our story.

Condition:

 “ Axonal-polyradiculopathy”,

refers to damage to multiple nerve roots sufficient to produce neurologic symptoms and signs as pain, weakness, and sensory loss in which makes her totally dependent on others. She suffers from numbness from her chest, down through feet, double vision, tingling in hands, loss of bladder and bowel control. - Doctors have told us that we are on a journey of bodily function restoration that will take several years to complete with a chance that some/all of her normal abilities may not be restored. Equipment purchased: 

-conversion van $70,000, motorized wheelchair $30,000, - ramp $5,500, with more expected. -To cover costs, I have sold assets that include a boat & a truck and. We have gone from a dual income household to being dependent on my income alone with some assistance from Janet’s long-term disability benefits. Goals: -Raise 100k, Both monetary and nonmonetary assistance to help lower cost appreciated - The money will be used to take care of and provide for Janet and help offset some of the financial burden that we have experienced

Unknown- “Not known; not within the range of one’s knowledge, experience, or understanding; strange; unfamiliar.” Example: a disease of unknown cause & origin. 

 Married 29 years, 3 kids, 1 daughter-in-law w/ 1st grandchild on the way, and 1 engaged, and 2 dogs.

 Janet’s been a professional nurse for 29 years, & a practitioner for one.

Situation:

It all started in June 2023. Unexpectedly Janet started feeling discomfort in her right foot, and it soon started moving up her leg. As a seasoned health care professional, she knew that the best way to handle any type of health issue was to take care of it early. Janet went to see her primary care professional who ordered an MRI and gave a prescription for steroids to help with her discomfort. After a week of no change to her condition we went to see an orthopedist. The orthopedist reviewed the MRI and told Janet that he did not see anything on the MRI to cause concern. He recommended that she follow up with a neurologist. The following weekend, Janet’s condition deteriorated to the point where she was taken to the ER and later admitted to the hospital. The neurologist rounded and ordered multiple tests to help pinpoint the cause of the physical challenges that Janet was experiencing. After reviewing the tests, the neurologist concluded that she had Guillain-Barre Syndrome and ordered IVIG and steroids for treatment. After the 5 days of medication Janet had improvements in her mobility so she was discharged to therapy. She was admitted to inpatient therapy and was there for roughly 2 weeks after which she was discharged home.

After a week at home, Janet had fallen w/o injury because she had become weaker. I was helping her get out of the shower when she suddenly fell on me. I controlled her fall to the floor so that she wouldn’t hurt herself. It took me about 30 minutes to get her off the floor and back into the bed due to the weakness she was experiencing. I felt that she needed to be taken to the emergency room, but didn’t know how I would get her out of the house and into the car. A call was made to the fire department for help. An ambulance took us to another hospital, where she was later admitted. While in the hospital, the neurologist ordered a spinal tap. His diagnosis contradicted the previous neurologist. The second neurologist did not believe it to be Guillain-Barre because the proteins hadn’t changed and because she lacked other symptoms associated with Guillain-Barre disease. However, the treatment regimen was the same as the regimen from her previous hospital stay with the exception that the treatment now included a high dose of steroids. Fifteen blood panels were sent for analysis, but all came back normal. After the medication treatment was completed, Janet was discharged back to the original hospital for inpatient therapy even though her symptoms had become worse and now included numbness to her left leg and midsection.

On the third day of inpatient therapy, the therapist noticed her hands had lost motor function. A request was made to re-engage with the previous neurologist. He rounded that day and ordered a treatment course of plasmapheresis. He said that plasmapheresis would cure all immune disorders, inflammation, or nerve demyelination. After 5 of 6 treatments, the physical therapist noticed she had double vision, so they ordered a stat CT & MRI. Both scans came back normal.

After evaluating all the results, we were then transferred to a teaching and research hospital so that specialized testing could be done. We met with multiple physicians who formed a care team for Janet. Their plan of care started with taking fifteen more blood panels and reviewing all tests previously done at the other two hospitals. The following morning Janet was sent for a nerve conduction study which prompted the physician to order further testing of the central nervous system. After all these studies the neurologist concluded that there was inflammation in the spinal cord. The doctor offered her two treatment options: the first was a drug that could take up to 3-4 weeks to act and the second was Chemotherapy which would have a quicker impact than the 3-to-4-week treatment associated with the first option. The neurologist recommended the Chemotherapy option since her symptoms were progressing rapidly. We decided and agreed to begin the Chemo treatment option. The treatment plan would be administered once a month for six continuous months. We stayed in the hospital for an additional three days after Janet received her first chemotherapy treatment. It was important to stay in the hospital in case she had an adverse reaction to the medications. After 3 days we were discharged to their inpatient rehab unit. Once in the rehab department the doctor had put a plan in place to assess the severity of the nerve damage and determine Janet’s functionality levels. The occupational therapist and physical therapist came every day and put Janet through a barrage of tests. The recommendation from the therapist was to acquire a motorized wheelchair so that Janet had the ability to be mobile. The therapist began working with me and Janet on using a slide board technique to get her in and out of the car. It didn’t take very many training sessions before we came to the realization that the use of a slide board would come with many challenges. We went through the training at the hospital so that I could get her safely in/out of the car and into her bed.We began working with a wheelchair company while Janet was undergoing rehab. They came to measure her for the right type of equipment and so that the wheelchair would “fit.” The wheelchair company also reserved a rental for her so that it would be available prior to Janet’s discharge from rehab. Like many homes in Alabama, our house was built on the side of a very steep hill. There was no practical way to get a 400 lb. modernized wheelchair into the house. We reached out to multiple companies who specialize in this area. We got multiple quotes ranging from $15,000-$25,000 for everything from ramps to lifts. We had friends reach out to us that they could help. They had a contractor that owed them several favors. I bought the lumber and the next day a crew arrived at the house and built a 100-foot ramp that had three turns and met ADA guidelines in three hours for little to no cost at all. My friend and I finished the rails that day, with Janet coming home the next day I still had time to finish the transition piece to get her from the deck to inside the house. Next day after work I stopped by the hospital before going home to finish the ramp. I got home around 5:00 P.M. and had to reinforce the rails too, so I finished them up first and then proceeded with ramp. I had almost completed all the hardest cuts that were done and in place I went to cut the last piece of plywood and blacked out on top of the table saw. I realized that I had had an accident and had severely injured myself. I was alone and bleeding badly. Made it in the house and called 911, was then taken to the local trauma unit. Once I got to the trauma unit, I realized that I cut off my middle finger above the second joint, cut my ring finger at the first joint below the nail and it (could not be saved) and cut my pointer ¾ of the way through but they were able to sew it back on. All in all, this delayed Janet’s discharge date by another week. A friend came by and finished the ramp that I

was trying to do before becoming injured.

After 4 months in and out of hospitals, Janet was finally able to come home. Shortly after Janet came home, I noticed issues with my ability to see. I came away from a visit to the local eye emergency room with a diagnosis that my right eye had 4 vitreous hemorrhages & adding to the fact that I’m a 30-year type one diabetic didn’t help my case. Surgery was recommended and the recovery would take time. Surgery was completed on both eyes a short time later. Fortunately, the surgery was successful.

The next step is to set up in home rehab and a sitter service. We have had to go through several sitters because none of them have been trained on the use of a slide board for a patient who is paralyzed from the chest down. Home health has been great, but it is only PT and once a week. The PT staff has conducted various assessments and made a recommendation that we purchase a Hoyer lift. We were told that there were services available to us that would help Janet to the doctor’s appointments. Those services have been very problematic. The first time they were late and the second time they were early and would not wait 15 minutes. So, we bought a conversion van, so we didn’t have to rely on anyone else. While this was a big expense to us, it provided a peace of mind knowing I have the means to get Janet where we need to: Chemotherapy, pain management, neurogenic bladder and bowel Neurologist, Neuromuscular Neurologist appointments and it gives me the ability to get her out of the house.

Several weeks ago, Janet asked me why I was doing so much for her. I reminded her of the marriage vows that we took almost 30 years ago, “in sickness and in health…”Our life revolves around the unknown. It is something that we struggle with every day. There is a lot that the doctors don’t know. It is unknown if Janet will get better, stay the same or get worse. It is unknown whether the chemotherapy is or will work, what long term side effects will be suffered from this type of treatment. It is unknown if Janet’s pain will go away, will she get enough function back to be self-dependent or will she require constant care for the rest of her life. I too struggle with the unknown. Will I get functionality back in my hand, will I get enough strength back to help care for my wife, will I get approved for a prosthetic finger and if so what’s the cost.

This is what it all comes down to, the unknown. We’ve never asked anyone for anything. The best term that comes to mind as I have reviewed the past 6 months is surreal. It doesn’t seem real, yet I am reminded of the reality of our new life at the start of every day.

In multiple hospitals for 4 months from July-October.

- Multiple diagnoses with multiple treatments meant extremely large and recurring/ nonstop hospital bills for us. -The tests included multiple MRI’s, CT’s, Spinal Taps, Nerve conduction study, plasmapheresis, 2 rounds of IVIG, and now a minimum of 6 chemo treatments.