Growing Into The Patient I Never Thought I Would Be
Chronic illness requires a lot from a person. In CF, it takes a lot away from a person at a young, fragile age. Many CFers are riddled with traumatic memories from their earlier days when hospital wards were adorned with colorful stickers on every wall, playrooms filled with everything a child could want, and nurses who wore teddy bear patterned uniforms.
Beneath the rainbows, clouds and unicorns was still a hospital ward with an important job: to get our IV lines into our tiny veins and hook us up to the pseudo super juice. Many CF patients are still plagued with crippled with procedure anxiety.
In the grips of needle phobia
That was me. I had embodied needle phobia so much that it would take days--not hours--to get a line in. My veins never juicy enough. The happy drugs were never happy enough. My mind never tough enough.
I wanted to be that patient who could handle whatever was thrown her way, but I wasn't.
Years, absolute years of agonizing procedures. So fretful of what treatment entailed, I would avoid it at all costs in my teens. When I did need to face it by buckling up and going in, I would have a complete breakdown.
The beginning of a different experience
I eventually got to grips with needles when I had a brand-new shiny port fitted. No more fiddling, no more poking at collapsed veins. Just a good jet of freeze spray, a count to three, and viola... needle in.
That worked well until my relationship with the pseudo super juice got complicated and my body said, “no more”. This meant PICC lines were needed as additional support. My lung bleeds increased, which meant big fat lines for chest CTs. I had no choice but to face the dark elephant in the room.
The first-time round, I begged them to put me under general. Knock me out and wake me up when it is all over. Of course, they didn’t. Instead, they spent days working me up to a cannula with enough diazepam to put a hippo out.
Choosing Life, choosing needles
Looking back, if you had told me at twenty that I would be brave enough to have a blood test without sedation – I would have laughed and told you were mad. Agree to have a PICC line and be awake for the procedure? Never. But, I can and I just did.
CF is just like life, it throws you curve balls and things you think you will never be able to handle. Well, you learn to handle them. That’s what happened with my lifelong battle with needle phobia. Life or death was the choice. I choose life, I choose needles.
Becoming the patient I always wanted to be
Hold my cap. I have finally graduated from the first decade of over-coming procedure anxiety. With every PICC line, additional canula, embolization procedure, blood test, failed attempts at getting it in first time, ports packing up, lines blocking. With every encounter, I have strengthened my resilience. I have learned new ways of coping.
With every procedure, I have seen that I am stronger than I think, more capable than I know, and worthy of a badge of honor. The CF life isn’t easy, but I have become the patient I always wanted to be and for that, I am thankful.
Have you or a loved one with cystic fibrosis experienced needle phobia? Share your experience in the comments below.
Have you (or a loved one) been experiencing any negative side effects from Trikafta?