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.
There is good news and bad news about getting old with cystic fibrosis. The good news is that I am getting old with CF! How great is that? Although it is happening to more and more people as medical care gets better and the median age of survival creeps upward, it still surprises me every time I have a birthday. I laugh at my wrinkles, chuckle at hot flashes, and marvel at the fact that I look, well, middle aged.
Living with an unpredictable illness is not all mirth and laughter, though. Some aspects of getting older are a bit more frustrating, at least for me. This is where Tonic, a new iPhone/iPad app, enters my story. As you probably know, staying healthy with CF requires more and more effort with age. There are more medications to take, more treatments to do, more effort is required to stay fit, to eat well, to manage CFRD, to get enough sleep, enough water, to do whatever it takes to make the plumbing system work well, remember appointments for the doctors and port flushes, to do…pretty much everything. Yet, just as the “CF care complication” factor increases, the ability of the mind (mine, at least) to keep track of it all begins its downward descent. This is poor design, but it is what it is.
I noticed it first with Advair. I can never remember if I have taken it. I don’t know… I seem to have a mental block. The block then spread to enzymes, vitamins, children’s names, books I’ve read, etc. While it’s much cheaper to be able to read the same book (and be entertained) multiple times, too many shots of ProAir or too many Pancrelipase capsules can be problematic.
I have officially dubbed this past winter, “the winter from hell.” For some reason, I had three episodes of pneumonia with resulting rounds of home IV antibiotics over the span of eight months. If this wasn’t enough, I cultured MRSA recently, so each round of IV’s included three different medications, all through IV access. IV meds must be refrigerated of course, and when they come in Entermates (as two of mine did), they need to be removed from the refrigerator a few hours before being used. When you forget to do this, 1) brrrr, and, 2) the infusion takes forever. Not to mention that during exacerbations, I do three treatments per day, try to sleep, try to remember to eat (when I have no appetite), and take the usual oral meds, supplements, and vitamins. I also have follow up appointments with doctors and need to get to the lab for blood draws three times each week. Did I mention the port dressing changes? I literally needed a flow chart to traverse through my day, or I would forget an essential item. Of course, most people get admitted to the hospital for this rather intensive treatment time, where, at least in theory, they keep track of these things. Wink. But I hate hospitals, and only go in if it is absolutely mandatory.
Enter Tonic. As luck would have it, I was able to beta test Tonic this “winter from hell.” Tonic is an app that helps you to remember and track whatever you need to track. Setting up Tonic is a simple task. You simply make a list of all that you want to remember and track. It took me about 30 minutes because my list of “tonics” was enormous. When it was done, though, my trusty little iPad would bleep whenever I had to do something. Take out med (bleep). Infuse this (bleep). Take this (bleep). Eat (bleep). Weigh yourself (bleep). Eat more (bleep). Trust me, the thing was bleeping all day, every day of each exacerbation. But I was so completely on track! I missed nothing. Nor did I do or take anything more than I was supposed to, because you check off each “tonic” as you do or take it. This is a very satisfying property of Tonic for anal compulsive people who like checking things off lists (like me).
Second, remember that the idea is to make your life easier, not to add another chore to your day. When my life is so complicated that I really need help, I use Tonic. But other times (like now) when things are pretty good, I let Tonic fade somewhat into the background. It still reminds me, but I turn off the “bleep” alarm and don’t always check off all the activities or enter a lot of data. You will find your own balance.
In summary, Tonic is just what I needed at just the right time. I would recommend it to anyone, whether you have a complicated regimen like mine, or just want to track a few things. If you decide to give Tonic a try, let me give you two hints. First, use it for all of the things you do for your health. Everything. Really. Meds, sleep, exercise, nutrition, water intake, everything you can think of that you know you want to do to be at the top of your game. For instance, Tonic even reminds me to journal, to stretch my hamstring muscles, and to meditate.
You can find Tonic on the web at .
Well, it has been a very long time, hasn’t it? You may wonder where I’ve been…why no words of wisdom from the now 50-YEAR-OLD Julie?
The reason is that it has been a winter from Hell, and I will just leave it at that because my mother (RIP) always told me that if I didn’t have anything nice to say, I should just say nothing.
But, here I am, ready to begin this strange past-time of blogging again, wondering if anything will fall out of my brain. I decided while on my walk today that I will begin by doing what is easy: posting what I have already written. Lame, I know, but let me explain.
Two years ago, I decided I knew exactly what would be helpful to other adults with CF, and I set out to write it up. I fondly titled this project my “CF Wellness Boot Camp.” The idea stemmed from the fact that most people with CF, and certainly all adults with CF, are increasingly thrust into what I like to term “exacerbation exasperation.” Say that five times as fast as you can. You know the game: you go about, living your life, doing what you do, feeling as good as you feel, and then WHAM, you are sick, need IV antibiotics, and essentially life must go on hold. Your body-your master- revolts, and you are its slave.
Three weeks later (and can I just get a hand here for Western medicine?) you are better. Your lungs are clear-or as clear as they get. You now have enough energy to shower. You look at your desk, your kids, your spouse/parter, your dog(s), your list of everything you were supposed to do back on the day before the aforementioned body revolt, the scale now reports that you are five lbs lighter… You take this all in, and the only thing you want to do is crawl back under the covers. Does this happen to you? It’s all so overwhelming, this re-immersion into your life. Whatever fitness progress you made before your illness is gone. The stress of being completely knocked down is replaced with the stress of getting up. At least, this has been my experience.
So, the plan for the Boot Camp was to outline a three-week plan (everything seems to come in blocks of three weeks) to begin anew and re-enter the world with some new, healthy habits to accompany those pristine (?) lungs. So I put on my wellness coach hat and began to write.
This was quite a project for me. I wrote for a couple of months until I was happy with the content. I then began to research how to make it into an e-book, put it on the website, and, generally, do all of the technical stuff that one must do in such a project. Roadblock. Big time. Julie is not “tech-y.”
Thank God for David Mahoney, though, because he really tried to help me. I was just not able to keep the ball rolling, and the project sat for two years, lost but not forgotten, on my hard drive.
So that brings me to my walk this morning. I want to blog again, so why not start by posting my 21-day plan? Maybe when it’s all up, I’ll figure out how to bundle it into a pdf and send it out instead of the fizzled out newsletter promise in the opt in box? Who knows?
So, as my favorite email come-on’s say, watch your inbox (for those who have opted in)! Tomorrow we begin the CF WELLNESS BOOT CAMP!
To your health….
Try out these exercises with your ball. They are great for your legs and abs! And don’t worry, you can do them with a PICC in your arm!
When you are addicted to weights as I am, those weeks with a PICC line can be a pain the the butt, and psyche. In order to not get completely depressed (i.e. to stay sick-but-getting-less-sick and happy), I always at least walk every day, and then as the magic juice starts working and I feel better, I’ll add in resistance work for my lower body. So I’m starting to add in some video blogs because a) they are easy to do, and b) it is much easier to demonstrate exercises than to describe them in words.
Here is the first of this weeks focus videos–LOWER BODY TIME. Today is the squat, a very basic exercise that targets multiple muscle groups. Go for it. Add weight if you can (hold dumbbells at your sides).