These are the last words I will utter about the month referred to above. Â After this, I shall erase this time from my memory and speak of it no more.
I should have known. Â It had been nineteen months since my last confession, I mean, hospitalization due to complications of cystic fibrosis. Â This may or may not have been due to the fact that I might have been enrolled in a research study involving a now famous potentiator in combination with an up and coming corrector of my fâ€™ed up CFTR protein. Â I cannot confirm nor deny that I have been a research subject for a large amount of those nineteen months. Â I have been sworn to secrecy by the research Gods who donâ€™t want study subjects blabbering all over social media about their experiences. So maybe Iâ€™ve been in a study, maybe not. I could tell you, but then I would have to kill all of you, which would be hard and very illegal.
Â It had become a frequent topic of conversation in our house. Â â€œMom, itâ€™s been so long since youâ€™ve had pneumonia! Whatâ€™s up with that?â€ Â To which I would respond, â€œI know…where is some wood to knock on?â€ Â My IV pole gathered dust, and I actually ran out of the thousands of little plastic bags that IV drugs are packaged in, which I had been collecting over the years.
When I passed the 12 month mark, I started to get a bit overconfident, I now admit. Â I hadnâ€™t gone for over a year in years! Â It seemed that every 4-6 months prior, I would get slammed with the two-by-four named cystic fibrosis, and end up in the hospital, followed by home IVâ€™s, followed by a short(ish) period of feeling sorry for myself, and then start all over again to become fit and healthy. Â It was a dance that I had down pat.
So, when my throat was a bit sore for a couple of days, I said it was the heater. Â And when I started to cough more than usual and felt tight, I decided it must be time to switch inhaled antibiotics…the colistin was getting to me. Â It took the fever to knock some sense into me. Â â€œOh yeah, Julie…you do have this small underlying issue. Â Perhaps if it looks like a duck, it might be a duck?â€ Â What a great diagnostician I am.
So exactly one week from a 45 minute jog/walk, I am calling my doctor to tell him I need an x-ray. Â First, letâ€™s talk about that 45 minutes. Â You probably donâ€™t get this unless you, too, have this stupid, fâ€™ing, ridiculous disease. Â In my twenties, a 45 minute jog was no biggie, Â Yes, it took longer for me than most to work up to this, but my lungs werenâ€™t that bad and I ran frequently. Â In my thirties, I could still jog continuously for 45 minutes, presuming I had been diligently training for months. Â In my forties, not a chance. Â I had to switch to the jog/walk side of the street. Â And it was a chore. Â I did it…because I knew it was keeping me alive. Â But it almost always sucked, and was only worth it when it was over. Â To be clear, I am now 53. Â A forty-five minute jog/walk meant I was the fittest (endurance-wise) that I could be. Â Iâ€™m not kidding myself, these lungs arenâ€™t ever again going to do much better than that.
Back to the phone call. Â From being at the top of my game one week prior, I had been slammed out of the blue by the railroad tie named cystic fibrosis. In a literal heap of piss-poor-protoplasm, I held on to my phone, listening unbelievingly to the message on my doctorâ€™s line, â€œI will be out of town and away from the office untilâ€¦.â€ Â forever from then. Â I needed an x-ray. Â The fever was now accompanied by an elephant sitting on my right chest wall, poking a sizzling hot tire iron into my ribs with every inhalation.
Ok, I thought. Â This is why God made cell phones. Â Fortunately, he answered (my doctor, not God) and ordered the needed test. Â Of course, I didnâ€™t really need an x-ray. Â I knew exactly what it would show. Â I was screwed. Â Not just because of the pneumonia, but because my guy was out of town. Â This meant an ER visit, followed by treatment by people who donâ€™t know me or my CF. Â Never a good combination and to be avoided at all cost.
So I did what any sane person who had a partner who worked at another hospital would do. Â I packed my bags, my Vest, and my dogs and drove an hour north to be admitted at Barbâ€™s hospital in Marin. Â At least they know me, and I am treated extremely well. Â It helps to have friends in high places. Plus Iâ€™m pretty sure Barb would not allow them to let me die. Â I landed in solitary confinement, with all visitors required to gown, glove and mask before entering. Â Flu? Â Who knew? Â MRSA…absolutely…droplet and contact precautions in place.
The dance commenced. Â In went the PICC. Â Drip drip drip went the triple antibiotics. Â The dilaudid was supplied as requested (thank you). Into the room came the meals, out of the room they left, untouched. Â The Boost supplement pile grew. Â The showerless days passed. Â The colon moved nary a muscle. The fevers remitted. Â The cough morphed from dry and painful to loose and rattley. Â The form that looked back at me from the tiny mirror above the sink grew smaller and smaller. Â I managed a walk around the ward. Â Then another outside to the circle in front of the hospital. I couldnâ€™t believe how weak I was and how those 30 or so steps did me in. Â 45 minutes, my ass. Â Finally, the home IV â€œlessonâ€ was given (I still laugh as I remember this…Iâ€™m sorry but I have a PhD in this stuff by now), and it was discharge day.
But this is where things got weird. Â Normally, after a week or so of IVâ€™s, Iâ€™m feeling pretty good and anxious to pull the PICC. Â Yes, I do it myself. Â Not this time. Â I couldnâ€™t eat. Â I couldnâ€™t sleep. Â The antibiotics were killing me. Â One of them, levofloxacin, was causing every tendon in my shoulders, hands and knees to ache and feel as though they could rupture at any moment. Â The other two were trashing my kidneys. Like any legitimate doctor-patient, I decided I should refresh my memory about the signs of uremia (kidney failure). Â I read on Dr Google about Â a new fun fact that I never learned in medical school. Â There is something called â€œuremic frostâ€ which occurs on the skin of people who are in florid renal failure. Â Oddly, it looks EXACTLY like my skin looks after a good hard sweat. Â And of course, I was sweating a fair amount. Â So I was pretty certain I was going to need a kidney transplant before a lung transplant…a first in the CF literature, I was certain.
Days went by. Â Friends brought food (thank you, you know who you are). Â I couldnâ€™t really eat it. Â The scale dipped to 100 pounds. Â This is when I freaked out. Â Tears came. Â Swear words were frequent. Â What the hell was wrong? Â Why couldnâ€™t I eat? Â Why was I disappearing? Â Why did I hurt absolutely everywhere? Â Where was a single molecule of ATP? Â I had none.
Finally, I decided that I couldnâ€™t take the antibiotics anymore. Â A ten day course was all I could take this time. Â Sure, Iâ€™m normally supposed to do at least two weeks, sometimes three. Â I would have to take my chances and hope 10 days was enough. Â Never before had the collateral damage of antibiotics been worse than the infection itself. Â This was a whole new world. Â I think perhaps it is a product of years of antibiotic use multiplied by years of age.
But even stopping the antibiotics didnâ€™t do the trick. Â I still abhorred the idea of food. Â I just wanted to sleep. Â Then, the fever came back. Â I kid you not. Â My heart fell into my slippers when I saw it was 100.1. Â I was frantic. Â I swear I took my temp at least once every 5 minutes, wondering what the hell I was going to do if it grew any higher. Â Back to the ER? Â Barb was out of town. Â Then the chest pain came back and I knew. Â I wasnâ€™t just screwed, I was royally screwed. Â I even told the kids that night that I was probably going to have to go into the ER the next morning. Â It was a Saturday night. The boys could go to â€œother momâ€ but what was I going to do with the dogs? Â What antibiotics could they even use this time? Â I had pretty much been through them all. These were the thoughts rolling around in my brain that sleepless night.
Then…I woke up to no pain and no fever. Â Not quite believing it, I continued my obsessive temperature taking throughout the day. Â Nothing. Â The next day…the same. Â I went for a walk. Â It was short, and veeeeery slow. Â Then I realized that I was slightly hungry. Â Wow…that was a strange feeling. Â I ate a bowl of soup. Â Then another. Â What was that fever and pain? Â Who knows. Â A bit of atelectasis maybe? Â The Universe messing with me? Iâ€™ll never know, but that last week was a whole new dance step.
Fast forward to today, the last day of the worst month in a very long time. Â Iâ€™ve gained back half of the weight. Â I walked an hour today. Â This, too, passed. Â Now Iâ€™m well into the very well rehearsed last part of the dance…getting back to that 45 minutes. Â The last memory I have is of New Year’s Eve.