Just Breathe….

When I was planning for this post I intended to write about milestones – I would have highlighted the 11th of August as my 18th month anniversary with Guillain-Barré Syndrome (GBS); discussed my emotional health and the relief I felt that I am crying less; updated on my physical status and celebrated that I have moved the blog from reflective to present day writing. I had a plan, then Baptist Health (BH) contacted me.

I received a request for a conference call via e-mail. I did not mention the e-mail to my family, for 3 months everyone was trying to convince me that the doctors at BH were just being thorough and the length of time it was taking to provide the treatment protocol and pricing was a positive but I was flat-out terrified the entire time. The e-mail quadrupled my anxiety, my stomach was in knots for the 5 hours between the e-mail and call and I could not add anyone’s anticipation or emotion to my own. 15 minutes before the call time I was sitting in front of the laptop with my voice recorder, notebook and trembling hands.

My International Patient Services Coordinator had to make 4 calls before he and the Medical Director were finally able to connect with me (of course the telephone system would pick that moment to be on the fritz).  The conversation provided a synopsis of the reports and lasted for only 16 minutes but felt considerably longer, I was certain that time had slowed during the exchange and in the hours that followed as I repeatedly read the medical report and pricing summaries I was certain it had stopped entirely and I was existing in a twilight zone masterfully created by Guillain-Barré Syndrome (GBS), Neurogenic Heterotopic Ossification (NHO) and Osteoarthritis (OA).

I had to use google to decipher some of the medical jargon but the report stated that I have significant bone growth surrounding both hip joints, resulting in immobility and causing my hips to be permanently bent at a 45° angle – no surprises there! The treatment plan for a single hip requires staged resection surgeries – a minimum 2, possibly 4 – to be completed 3 to 4 weeks apart providing there are no complications, infections or fractures, low dose radiotherapy and intense physical therapy. Afterwards, the same process would be repeated on the other hip. Only at that point can it be determined if a total hip replacement is required and that surgery would then be undertaken. Each of the surgeries based on a 3 day hospital stay was quoted at USD $101,610.00, inpatient physical rehabilitation for 7 days at USD $11,760.00 and 12 sessions of outpatient rehabilitation at USD $1,380.00. The prices do not include professional fees for the surgeons and rehabilitation specialist nor do they account for emergencies, extended hospitalization, other physician or medical services, rehabilitation between the multiple procedures or accommodation, food and ground transportation for the months that I would be in Miami – multiple surprises there! I knew my case was complex but in my mind that did not translate to possibly 9 surgeries and a cost in excess of USD $1M.

Every time I read the reports, analyzed the pricing spreadsheet or communicated the figures I felt my heart and stomach constrict, my entire body felt 10 times heavier than it was for days. I had a whisper of hope on my right shoulder telling me that I have survived and fought for 18 months so I cannot give up now and thunderous fear was on my left telling me I could never afford the surgeries. Fear was also happy to remind me of the mind-set surrounding my Dreams of Fears post – what if I never walk again & live my best life, wheelchair included – and was clearly taunting me. Did I immediately respond with resilience? No! I faltered and became so overwhelmed and panicked that the crying less notion quickly became null and void and I literally could not breathe without a piercing pain in my chest.

31st August, 2017: 574 days with GBS & NHO and I was once again forced to remind myself to just breathe…

*** … and trust in my journey, especially in these daunting moments ***

About Dawn Drayton-GBS

In February, 2016 I was diagnosed with Guillain-Barré Syndrome (GBS). To mark my one year anniversary I have launched this blog. I am hopeful that by sharing my journey I can not only motivate myself and others but also raise awareness of GBS and it’s devastating effects on your physical, emotional and mental health.

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