I Refuse to Sink

teamdeboforcfFor the second year in a row immediately following New Year’s Eve, I was admitted to Harris Methodist in Fort Worth to combat my lungs sounding like a rusty swingset when I breathe. I see a holiday tradition developing that I am NOT particularly fond of, but I AM tremendously grateful for my stellar CF team and how they never fail to get me in and set up for treatment, despite such short notice. Last January, I managed to hold out through the first weekend of the year until after I was able to fulfill my bridesmaid duties for a friend’s wedding, then underwent an 18-day doozy of a visit that included my fifth sinus surgery to clean out all of the infection that had been building since my last operation in 2010; and a surprise diagnosis and treatment of severe anemia via three back-to-back blood transfusions and daily iron transfusions that spiked my red cell blood count from until half of what it should have been to closer to the normal range for a female my age.

teamdeboforcfAdmittedly, this year didn’t start out much smoother. They ran a PICC line up my left arm when I was first admitted on Friday, but over the weekend, it failed. During the wee hours of Monday morning (see also: 4:30am), they sent in a new PICC tech to pull it and re-PICC my right arm, which also failed only a few hours later. So from Tuesday until Thursday, my antibiotic treatment was scaled down to the bare necessities and delivered through good old-fashioned IVs in my right and left forearms, which blew three veins and took more attempts to nail than I could keep track of. Five per arm? Six maybe? I can’t remember. Needless to say, my veins are done after the increased IV use over the years and being unable to successfully run PICCs or IVs through them without them giving out was causing roadblocks in my treatment. So…I finally made the decision to have a permanent port placed in my chest. A port is a disc about the diameter of a quarter, sewn underneath the skin below my collarbone, that connects a catheter to a vein above my heart for easy access when I need IV antibiotics and blood draws. The procedure is extremely common among CFers, but is still emotionally challenging to accept because it’s associated with the reality of being necessary because other options have run out. As daunting of a decision as it was to make at first, I couldn’t be happier with it now; It’s surprisingly easier and less painful to access, despite being in such a sensitive area, and is far more convenient than having a miniature robot dangling from my arm. Proof that fear, my friends, is a big fat liar 😉 I may have slightly overdone it though – I woke up from surgery feeling REALLY good and chose to participate in physical therapy two hours later. Little did I know the amount of morphine they had blessed my system with before the twilight wore off or how pushing myself to jog for twenty minutes probably wasn’t the best idea given the area that would shake while doing so. Suffice to say, I spent the rest of the evening in bed, re-Morphine’d up and sat the following day out of physical therapy. Now that that’s all been squared away, they’ve been able to restart full IV treatment with round-the-clock Vancomycin, Tobramycin and Aztreonam IVs, oral Prednisone and my regular breathing treatment therapies every four hours with the addition of the inhaled antibiotic, Colistin. Things are looking up, my friends. Finally.

teamdeboforcfFor some reason, I’ve been clinging especially hard to this little token of personal encouragement throughout this stay. I wanted this ring for months and finally decided to treat myself with it during my last hospital admission. It stays with me always, but seems to serve me more than usual when I’m in here and missing the comforts of home and the normalcy of life outside of these walls. I don’t know why I am so consistently blown away by the outpouring of love and support every time I have to be admitted, but seriously, the people in my life never fail to amaze me. Thank you for the texts, calls and Facebook messages that have honestly been too numerous to count, for the flowers, the visits, the food (OMG the food…) and everything else that has put a smile on my face while I’ve been in here. I don’t know what I would do without my support group who never fails to lift me up when I’ve fallen, but I do know that they are a huge part of why I will always refuse to sink.

On a related note, I’ve been asked a few times what exactly a PICC line is and how the procedure to place it is performed. So during this admission, I decided to film a selfie video for my second vlog to share with everyone curious enough to see it firsthand. PICC lines are catheters the diameter of a spaghetti noodle that are threaded up through an artery in a patient’s arm to their heart to preserve their veins from the damaging effects of the harsh IV antibiotics. It’s slightly graphic, but in my opinion, interesting to watch.

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