By Paulina Brooks
For the last six months, I have been afflicted by paralysis. Not the paralysis that can occur with a diagnosis of chronic inflammatory demyelinating polyneuropathy (CIDP). My paralysis was emotional, the result of frustration that arose from misleading information regarding my treatment options. Before my first intravenous immune globulin (IVIG) treatment, I felt so grateful for this life-saving therapy and fortunate to receive it in the comfort of my own home. Sadly, everything from covered benefits to the competency of my caregivers turned out to be less than a positive experience.
As I quickly discovered, the home health agency’s staff was neither proficient in infusion therapy nor familiar with IVIG. Equally important to me is continuity of care, something that in my case they were unwilling to provide. The reason? As the agency’s only patient ever to receive IVIG, its nursing director saw me as an opportunity for training, and my home - my sanctuary - became a revolving door as nurses came in and out to observe me.
Clearly, their focus was not on patient care. I felt like the girl in the bubble, an experiment of sorts, rather than a human being fighting to overcome a serious neurological disease. And, while I am very fortunate to have a physician for a husband who supervised those nurses and taught them as much as he could about IVIG, I am keen on separating his role as a doctor from that of my partner of 20 years.
I terminated that agency’s contract after just two courses of IVIG. I did not want to experience something so intrusive ever again. Subsequently, my insurance denied all claims. Records to prove medical necessity for IVIG were required to file appeals and resume therapy, but my neurologist became complacent; it was neither his obligation to provide supporting documentation, nor my job to “stress out” trying to find a way to get treatment.
Obviously, the manner in which my former doctor dismissed my concerns, and even the way the IVIG itself was delivered, left much to be desired. No one on my medical team shared my sense of urgency, and it infuriated me. Eventually, I looked for a new specialist and made the decision to go to an infusion center, although the thought of the latter frightened me. I pictured the hospital setting as a cold and very impersonal environment, surely as depressing as scenarios portrayed in movies. But this was my only option and the choice that ultimately made sense for me. The good news is, I was wrong! Today, I have a new specialist affiliated with the hospital where I receive my monthly infusions, and all costs are covered.
Living with a debilitating condition has left me with limited social interaction; the infusion center gives me an opportunity to change that. Witnessing other patients go through their various treatments has helped me see that I am not isolated after all, and rather than dreading treatment, I am now confident in its delivery because I can count on the same friendly and knowledgeable staff to treat me with dignity and respect.
When we live with a chronic illness, our outlook on life and compliance with a plan of care depends highly on effective communication with everyone involved. As with every personal journey, we all must strive to find what works, and along the way, we learn more about ourselves. The road to my newly found peace of mind and improved health was not easy, but knowing that I can take an active role in my care empowered me - even if that meant changing physicians and treatment facilities. IVIG has indeed given me not only life in more ways than one, but also a voice.
