These are the last words I will utter about the month referred to above. After this, I shall erase this time from my memory and speak of it no more.
I should have known. It had been nineteen months since my last confession, I mean, hospitalization due to complications of cystic fibrosis. 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 f’ed up CFTR protein. I cannot confirm nor deny that I have been a research subject for a large amount of those nineteen months. I have been sworn to secrecy by the research Gods who don’t want study subjects blabbering all over social media about their experiences. So maybe I’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.
It had become a frequent topic of conversation in our house. “Mom, it’s been so long since you’ve had pneumonia! What’s up with that?” To which I would respond, “I know…where is some wood to knock on?” 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. I hadn’t gone for over a year in years! 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 IV’s, followed by a short(ish) period of feeling sorry for myself, and then start all over again to become fit and healthy. 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. 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. It took the fever to knock some sense into me. “Oh yeah, Julie…you do have this small underlying issue. Perhaps if it looks like a duck, it might be a duck?” 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. First, let’s talk about that 45 minutes. You probably don’t get this unless you, too, have this stupid, f’ing, ridiculous disease. In my twenties, a 45 minute jog was no biggie, Yes, it took longer for me than most to work up to this, but my lungs weren’t that bad and I ran frequently. In my thirties, I could still jog continuously for 45 minutes, presuming I had been diligently training for months. In my forties, not a chance. I had to switch to the jog/walk side of the street. And it was a chore. I did it…because I knew it was keeping me alive. But it almost always sucked, and was only worth it when it was over. To be clear, I am now 53. A forty-five minute jog/walk meant I was the fittest (endurance-wise) that I could be. I’m not kidding myself, these lungs aren’t ever again going to do much better than that.
Back to the phone call. 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 doctor’s line, “I will be out of town and away from the office until….” forever from then. I needed an x-ray. 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. This is why God made cell phones. Fortunately, he answered (my doctor, not God) and ordered the needed test. Of course, I didn’t really need an x-ray. I knew exactly what it would show. I was screwed. Not just because of the pneumonia, but because my guy was out of town. This meant an ER visit, followed by treatment by people who don’t know me or my CF. 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. I packed my bags, my Vest, and my dogs and drove an hour north to be admitted at Barb’s hospital in Marin. At least they know me, and I am treated extremely well. It helps to have friends in high places. Plus I’m pretty sure Barb would not allow them to let me die. I landed in solitary confinement, with all visitors required to gown, glove and mask before entering. Flu? Who knew? MRSA…absolutely…droplet and contact precautions in place.
The dance commenced. In went the PICC. Drip drip drip went the triple antibiotics. The dilaudid was supplied as requested (thank you). Into the room came the meals, out of the room they left, untouched. The Boost supplement pile grew. The showerless days passed. The colon moved nary a muscle. The fevers remitted. The cough morphed from dry and painful to loose and rattley. The form that looked back at me from the tiny mirror above the sink grew smaller and smaller. I managed a walk around the ward. Then another outside to the circle in front of the hospital. I couldn’t believe how weak I was and how those 30 or so steps did me in. 45 minutes, my ass. Finally, the home IV “lesson” was given (I still laugh as I remember this…I’m sorry but I have a PhD in this stuff by now), and it was discharge day.
But this is where things got weird. Normally, after a week or so of IV’s, I’m feeling pretty good and anxious to pull the PICC. Yes, I do it myself. Not this time. I couldn’t eat. I couldn’t sleep. The antibiotics were killing me. 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. 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). I read on Dr Google about a new fun fact that I never learned in medical school. There is something called “uremic frost” which occurs on the skin of people who are in florid renal failure. Oddly, it looks EXACTLY like my skin looks after a good hard sweat. And of course, I was sweating a fair amount. 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. Friends brought food (thank you, you know who you are). I couldn’t really eat it. The scale dipped to 100 pounds. This is when I freaked out. Tears came. Swear words were frequent. What the hell was wrong? Why couldn’t I eat? Why was I disappearing? Why did I hurt absolutely everywhere? Where was a single molecule of ATP? I had none.
Finally, I decided that I couldn’t take the antibiotics anymore. A ten day course was all I could take this time. Sure, I’m normally supposed to do at least two weeks, sometimes three. I would have to take my chances and hope 10 days was enough. Never before had the collateral damage of antibiotics been worse than the infection itself. This was a whole new world. I think perhaps it is a product of years of antibiotic use multiplied by years of age.
But even stopping the antibiotics didn’t do the trick. I still abhorred the idea of food. I just wanted to sleep. Then, the fever came back. I kid you not. My heart fell into my slippers when I saw it was 100.1. I was frantic. 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. Back to the ER? Barb was out of town. Then the chest pain came back and I knew. I wasn’t just screwed, I was royally screwed. I even told the kids that night that I was probably going to have to go into the ER the next morning. It was a Saturday night. The boys could go to “other mom” but what was I going to do with the dogs? What antibiotics could they even use this time? 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. Not quite believing it, I continued my obsessive temperature taking throughout the day. Nothing. The next day…the same. I went for a walk. It was short, and veeeeery slow. Then I realized that I was slightly hungry. Wow…that was a strange feeling. I ate a bowl of soup. Then another. What was that fever and pain? Who knows. A bit of atelectasis maybe? The Universe messing with me? I’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. I’ve gained back half of the weight. I walked an hour today. This, too, passed. Now I’m well into the very well rehearsed last part of the dance…getting back to that 45 minutes. The last memory I have is of New Year’s Eve.
A post from the hospital:
Last week, I was admitted to the hospital to get a central line placed for a course of home IV antibiotics. I was in for two days…not bad, really. The only reason I had to be admitted was because in order to get it put in as an outpatient, I would have had to wait two weeks. Not good when you need antibiotics. The experience was SO different from the one I had last winter because I actually didn’t feel sick this time My PFT’s were significantly down though, and it seemed like a good thing to do. In fact, it was kind of comical. Below are some of my observations, which I had been diligently jotting down:
First, if you really want to confuse nurses, go into the hospital relatively healthy. Bless their hearts, the poor things don’t know what to do with you! I was bopping around the nurses station, asking if I could go find a coke machine my first afternoon, and the look of pure incredulity I received was priceless. I couldn’t help it…I had asked for a coke at 2:00, and by 4:30, I was getting really thirsty! They told me that “my doctor didn’t write an order that would allow me to ambulate” (I so love that word). I told them, “Well, I’m a doctor. Can I write the order? Clearly, I am capable of walking…even without an order.” They weren’t amused, but they did go raid the staff refrigerator and get a coke for me.
When the fifth year medical student from Stanford came in, I was in a feisty mood, so I didn’t tell him that I was a doctor at first. He was taking the usual exhaustive history that you take when you are on the wards for the first couple of years. A typical dialogue is below. I have changed the name of the med student because he was very nice and I liked him…green as he was…to “Doogy Howser” because I swear he was the spitting image. It goes like this:
Doogy, ascertaining the chief complain (cc): “So, tell me why you’re here?”
Me: “I have CF.”
Doogy, digging deeper: “Well, tell me how your last couple of days have gone?”
Me: “Pretty well. I went running this morning.”
Doogy, confused: So…why do you need antibiotics?”
Me: “My doctor said so.” And on it went for awhile. Then I felt bad, and started to be nicer, answering all of his questions with a smile. He got back at me though, I found out the next morning when the nurse came in with my meds.
First, she tried to give me a shot of sub-cutaneous heparin. I said, a bit bewildered, “I don’t need that.” I’m not sure anyone has turned her down before. She looked sad.
It turns out that if you are in the hospital, they assume you are bed-ridden (imagine that) and need to be guarded against blood clots. She apparently hadn’t seen me do my yoga routine earlier.
Then came the stool softener and the Prilosec. If you even get close to a hospital, you get a stool softener and a Prilosec. Try it. Drive by, and see what happens.
When the PICC nurse couldn’t get the line in the next morning, I had to go to interventional radiology. This was quite a treat, because they have very cool imaging in radiology that you get to watch…in real time. So, after I got over the humiliation of riding in a wheelchair (the RULE…there are a lot of RULES), when I could have taken the stairs at a run, and beat the transport person taking the elevator, I hopped up on the table and asked if I could watch the line snake its way from my elbow to my heart. That was definitely the highlight of the visit for me.
The weird thing was, after the line was placed successfully, I had to wait to show them that I knew how to give myself the antibiotic. Now this RULE was really annoying, but humorous nonetheless. I’ve probably given myself IV infusions 600-700 times (rough estimate) but I had to prove my prowess.
Finally, at about 5:30, I was informed that my meds had been delivered from the central pharmacy, but I had to wait while they changed the labels…don’t even ask…another RULE. Then the call came, the drugs were ready. Do you think I got to go get them and leave? Nope…had to wait for transport again. This time, I drew the line. I walked to the pharmacy, next to transport. We had a nice chat.