Update: Katie’s next trip to Vanderbilt is scheduled for July and hasn’t been cancelled yet despite COVID-19 due to medical necessity, but we aren’t exactly sure what travel will look like when it already involved extra time scanning 10+ bags of saline and carrying a 35 pound bag of Medical supplies/needle kits/fluids and a bag of 40–something bottle of pills, special security searches for Katie since she’s attached to a machine, Lysol wipes, masks, pre-boarding, Flight Attendant discussions and extra medications and worries as it is.
The virus has also continued to delay her back surgery due to travel (she will be traveling out of state to a more skilled facility in order to see a specialist equipped to handle her unique case) and especially infection fear. Currently, she is completely dependent on using a walker or wheelchair.
She has also recently been faced with the harsh reality that she is too sick to receive the treatments or procedures recommended for her conditions because she is simply too sick and weak due to her conditions. It’s an interesting conundrum that we are both trying to come to terms with and figure out.
Multiple times a year, Katie has to make the trip from Florida to Nashville, Tennessee to go to Vanderbilt University Medical Center. Her team of specialists in Bradenton and at the Cleveland Clinic (who now work hand-in-hand with Vanderbilt to carry out their plans while she is in Florida) both referred her there because it is home to one of only two Dysautonomia Clinics and thankfully
The doctors there accepted her due to the complexity of her medical situation with multiple rare and chronic illnesses as people come from all over the world to seek help and the waiting list. The nurses told us that the waiting list is typically 2.5 years long, but due to the severity of her case, Katie was given her first appointment and was on a plane a month later for a week long trip full of testing (many of which we have never even heard of before! It was an eye-opening visit.) and appointments. A few months later, Katie’s Dysautonomia and Gastroparesis symptoms were progressing and she was fainting (or so we thought) more often so her doctors at Vanderbilt needed her to come back up for more appointments and testing. This time, she was admitted in the hospital for a ten-day EEG where it was discovered that along with fainting from Dysautonomia, she also has two seizure disorders (some of the seizures mimic fainting if you aren’t sure what to look for), and including seeing a multitude of other specialists, having genetic testing, various other procedures, and treatments, we were in Nashville for two and a half weeks. We learned a lot about how to manage Katie’s conditions as best as possible, but along with Katie’s “normal” medical expenses, these very necessary medical trips the Vanderbilt are becoming difficult. Katie doesn’t like to complain, and tries to keep things lighthearted even when she is struggling and worrying (and rightly so to both of those) because she doesn’t like to be a burden or worry others. She shares parts of her medical journey in hopes of helping others in similar situations and to make others not feel as isolated as she often does, but even in that, she very greatly edits what she makes public out of fear of over sharing, losing friends, upsetting others, and being a nuisance.
But at this time, with everything that has unfortunately come at her this past month alone- on top of everything she goes through on a daily basis- because she could use help in traveling to Vanderbilt to see her doctors in January this is just a few of the things that she silently deals with that you might not know in case you would like to help her cause given that it is her birthday and the holiday season.
- She has an IV in her chest 24/7; removed and instantly re-inserted every Monday; the needle is 1.5 inches long
- While having her needle changed Monday, she additionally either has a B-12 injection, a blood transfuion and IVIG (for Hypogammaglobulanemia or essentially lack of an immune system), infusion for Osteoporosis, bloodwork, or Iron/Potassium/calcium infusions.
- She has to wear a mask in public because of her extremely poor immune system as a simple cold or virus could hospitalize her.
- She is attached to an IV pump between 20 and 24 hours a day to help with her Hypovolemia (she has 38.6% less blood than the average person), Gastroparesis (Paralyzed stomach), and Dysautonomia (Central Nervous System Dysfunction)
- She jokingly calls herself a professional patient because she certainly has 4 doctor appointments per week currently but often has more.
- She eats a little bit for muscle memory in hopes for a GP cure/treatment one day, but automatically vomits nearly everything solid
- She has 2 herniated disks and spinal stenosis but isn’t a candidate for surgery because doctors think her bones will just crumble (as evidenced by the extremely slow/poor healing in her two currently broken feet) if they try to fix it and cause paralysis or her Ehlers-Danlos Syndrome will prevent healing and cause an infection in her spinal cord.
- She faints or has seizures almost daily and once they happen they tend to come in clusters.
- She was diagnosed as legally blind due to Uveitis (Arthritis of the eyes) and secondary diseases and thus undergoing placental membrane transplant surgeries to regain her eyesight.
Her medical team at Vanderbilt have truly saved Katie’s life as well as preserved her quality of life and they keep coming up with new ideas and treatment options for her continuing care.
If you would like to help donate to Katie’s travel funds to get to Vanderbilt Medical, please know that we are more thankful than you know and truly any amount helps and we are very grateful for it.