My Melmoirs

It happened! It happened!! By the skin of my teeth, I finally made it into the clinical drug trial! It was a stressful few months leading up to the big day because if I wasn't able to stay healthy and needed antibiotics, I would've permanently been removed from the trial; no pressure! Indeed, during those two months, I was not feeling well, I had a few episodes of hemoptysis (coughing up blood), and I probably did need antibiotics, but I didn't DARE mention any of that to my docs, the trial was way too important.  About two weeks ago, I started the study drug. I had a 50/50 chance of receiving the study drug or the placebo (a sugar pill). Within hours I felt subtle changes that probably could've gone unnoticed were I not so attune with my body. During the preliminary physical, I was afraid to take a deep breath as the doctor listened to my lungs because my lungs were junky and rattling and I didn't want the doc to catch on. Four hours after taking my firs...

Expect the worst, hope for the best.  This has been the case this round of IV antibiotics and, three weeks in, it's going better than expected (yet not without its challenges). Hands down, the hardest part has been the side effects. At my one-week follow-up a few weeks ago my PFTs were already up 10%--they've never rebounded so quickly before, thus making the lousy side effects a little easier to suck up.  Last week though I had a setback, including some bleeding from my lungs and GI issues, which caused my PFTs to decline a bit. So the team added a third antibiotic, which sparked a whole new round of yucky side effects and early signs that it was affecting my pancreas. After three days, I waved the white flag and discontinued that antibiotic.  Since stopping that med, things have started to improve and I'm confident they'll pull my line when I head into CF clinic tomorrow. I'll have to go back in a few weeks for a cardiopulmonary test to explore a minor...

Hello friends! I am happy to report that this hospitalization has been uneventful and, in some ways, blindingly beautiful (keep reading and I swear that will make sense.)  On day 2, I was desensitized to the antibiotic I’m allergic to (meropenem), which took most of the day and included a boatload of antihistamines that made me feel very ‘out of it.’ I did develop the allergic rash despite taking Benadryl with every dose but I am able to tolerate it so there’s a ‘win.’  My x-rays show some worsening changes, which confirmed that it was time for IVs. Since I am stable and my blood work looks good I get to go home today! Hip hip hooray!  Despite my outward appearance ( I have mastered the art of disguise)  I am still struggling to feel “normal.” While I feel exhausted, itchy, and “yucky” it is not as bad as I had expected, so I’m happy. I am back to needing to wear oxygen when I walk but am fortunate it’s only temporary. I will continue the IV abx for a few ...

Back in May, my doctor and I were debating whether or not I needed to go into the hospital to start IV antibiotics. I couldn’t bear the thought of losing the summer with my family though, so I pleaded my case to wait until September. My doc agreed and during the summer I was kept afloat alternating oral and inhaled antibiotics instead.  Even though I didn’t feel "great," I managed to stay healthy enough to enjoy the summer and made lots of priceless memories. Then, a few weeks ago, I began to unravel and once Labor Day rolled around I knew a hospitalization was looming, yet I felt greedy; I wanted to enjoy autumn as well dammit! Which begs the question: is there ever really a good time to be out of commission? Alas, I had to face the reality that my body can no longer keep up and the hospital is what’s best, like it or not. Since the spring, my PFTs having slowly declined 14%, I’m losing weight because my lungs are working so hard to breathe, it physically hurts me ...

Last week Myles saw fireflies light up for the first time ever. To put this into context, this insect-obsessed kid would constantly find fireflies during the daytime, but never at night. We even tried catching a few and watching them in a jar at night to see them light up but to no avail, so this was a big deal!  His excitement was matched by my delight to be able to share another 'first' with him and bear witness to his ethereal wonderment. There the two of us sat in the simplest of joys when he turned to me and said: "I love this moment."  It hit me like a ton of bricks. I would have expected him to say something like "This is the best night ever!" (which he also did say) or "I love this" But instead, he chose to say "I love this moment ."  Without even trying, he is so present and experiences life one moment at a time--something I've let slip through my fingers as of late. He wasn't just observing that moment, he was ...

You've heard it, you've seen it, you may have even used it yourself: #Blessed. It's online, on t-shirts, on signs, you name it.  While the phrase "#Blessed" may be overused, it's a great sentiment; acknowledging how fortunate we are and expressing gratitude for it.  That being said, some weeks ago a thought crossed my mind and I can't shake it: What would the world look like if we shifted our mindset from being blessed to being a blessing?  What if #BeABlessing became just as popular?  What if it shifted our focus from self to others?  What if it inspired more people to pause and reflect on how they could brighten someone else's day? It wouldn't only help others, this article from a mental health organization ( click HERE  if you'd like to read it) explains the emotional and physical benefits that we would feel as well; a win-win with unquantifiable benefits.  So what does it look like to be a blessing? That's a matter o...

Even though the new inhaled antibiotic was  unpleasant and incredibly time-consuming,  I managed to take it for 3 weeks and I am happy to report that it paid off! I went back to my CF doc a little over a week ago and my PFTs were up 4% and my weight was the highest it's been since I was pregnant! This matters because there is a direct correlation to CF body weight and breathing function. It's also an indicator that my lungs aren't working as hard to breathe (score!). Now that we're in June and Myles will be getting out of school soon, I expressed that my new goal is to avoid hospitalization until September when he's back in school. My doc agreed that my new goal sounded feasible, and that's all I needed to hear.  The weather in the Northeast is finally beautiful and it's time to start enjoying summer in all its splendor. I yearn for a slower pace; to spend more time in nature, feeling small; to reconnect with things that matter most. That's m...

Years ago I heard something that stuck with me: When you make up your mind to do something, the Universe will throw you challenges to test your resolve. This stuck with me because I’ve found it to be so true. Like when you decide you're going to eat healthy and someone brings a tempting dessert into work or when you say you're going to be kinder and someone pushes your buttons and tempts you to lose your cool.  Many a time I have experienced this myself, most recently the past few days. In my last post, I declared my commitment to resilience and overcoming my health challenges. Within hours of writing that post, I learned that my lungs are culturing a new bacteria in addition to three strains of my usual bacteria (not good news.) Two days later, I found out there've been delays getting the new antibiotic (which I still don’t have), I had a suspicious mole removed for pathology testing, and I had a pancreatitis flare (painful inflammation of the pancreas for whic...

Anyone living in New England knows that the much-anticipated spring weather has been disappointing, to say the least. Here in MA, we've had a record-setting amount of rainy days, creating a dreary vibe. My personal vibe has been the same.  What I thought were allergies back in March was actually a cold that quickly went straight to my lungs. I spent all of April trying to get healthy to no avail. I tried three oral antibiotics + one inhaled and still felt awful and had multiple bleeds in my lungs (hemoptysis). I went to see my CF doc last week and luckily my PFTs were stable, but my other symptoms need to be addressed. The sad reality is that we're out of treatment options. I'd already tried the only oral abx that have any chance of working and she didn't want me to use IV abx so soon because I'm already so resistant to them with adverse effects on my other organs. So we had to get creative. Pending insurance approval (which can take at least a week) I will ...

The movie Five Feet Apart is the first major motion picture about cystic fibrosis--a big deal for the CF community! The entire movie takes place in the hospital and was heavily influenced by a real-life young woman who was living with CF, Claire. Sadly Claire passed away after complications from her lung transplant last year and never got to see the final product.  I've seen the movie...twice. The same movie, two totally different experiences.  The first time I saw it I was with my sister, Jen, and my 14-year-old niece. My niece is not a very emotional person and Jen is very supportive and a quiet crier, so while certain parts were extremely emotional, I was also able to leave the theater taking away the funny moments and the positive messages driving the film. They were the perfect people to see the movie for the first time with.   The second time I saw the movie I was with my husband, Mark, and one of my besties, Didi. This could not have been a more diff...

Despite the slow thaw of this winter, I am ecstatic to report that it's spring in my world!  Slowly but surely, I am feeling better and making progress and my clinic appointment last week even confirmed it. My PFTs were up 5%, I am breathing easier, have more energy, and I've gained weight, a sign that my lungs aren't working so hard to breathe. Yay!  While I am reveling in these successes, there is still more progress to be made. After two weeks oxygen-free, I've had to resume wearing oxygen whenever I'm walking more than a few minutes. I also had a couple of bleeds last week, need to consult with a cardiologist, am still having lung pain, and will need to resume inhaled and oral antibiotics this week. Truth be told, I could've started the antibiotics already, but I'm really enjoying a few days of a side-effect-free "vacation" (all three days that is!) I am loving my mental clarity and don't want to see it decrease. It's a delica...

The other night I was semi-watching a National Geographic show about Yosemite National Park. At one point they were showing the devastation that resulted from last year's forest fires which was obviously somber and melancholy. But what they showed next really captured my attention: Fewer trees in the forest allows more rain and sunlight to reach sequoia seeds, allowing more and more sequoias to grow. It was a silver lining to the devastation that caught my attention. Just when you think there can't possibly be one, there it is!  Then it showed how these tiny fragile seedlings will withstand harsh storms, winds, and blankets of snow to flourish into these enormous majestic beings that will go on to live for   thousands  of years! This is nothing short of miraculous.  I needed that reminder after the past few weeks. While I am no longer on IV antibiotics, they weren't stopped because I was better, they were stopped because they weren't helping. I end...

Two weeks ago I wrote about a change in medications, optimistic the new cocktail would do the trick and help me feel better.  Two weeks later, I went into CF clinic only to find out that my PFTs (breathing tests) had slipped even lower than they were before I started the IV antibiotics, there were more negative changes to my x-rays, I wasn't feeling much better, and my lungs were now culturing a second type of bacteria--one that is only sensitive to two antibiotics, both of which I've had adverse reactions to in the past.  It was frustrating that after 5 weeks on IV antibiotics (9 weeks if you count the oral antibiotics beforehand) and I was no better than when I began. When I left the hospital last week I kept thinking I don't get it, I'm doing everything I can to get better. Why isn't it working? I went home continuing the 3 antibiotics I'd already been on and added a 4th antibiotic for the new bacteria plus prednisone. After only one dose of the n...

The weather here in New England is often two extremes: three of the four seasons are pleasant and beautiful but winters mostly suck. My world the past few weeks has felt like a New England winter.  In my last post, I had just gotten home from the hospital and had switched one of the IV antibiotics. Well, that did not go well (at all!) and after only 48 hours it had to be discontinued.  After a third antibiotic switch things settled down but I was still left super foggy and exhausted. It was hard for me to focus and string together thoughts, which made conversing with others (or even writing) a real challenge. I felt trapped in my mind, void of an outlet, isolated and overthinking. That's not even taking into account what was happening in my body. The internal battle royal between the bugs and antibiotics left me depleted. I would still walk on my treadmill every day but that would use up all of my day's energy. My chronic tinnitus (ringing in the ears) had bee...

The good news is I'm back home! The bad news is the new antibiotic has me stuck in "side effect hell." Every bone in my body hurts. My muscles hurt. It's hard to move my hands, wrists, knees, and arms. My body is swollen, my appetite is nil, I have the chills, and my brain is super foggy. Not only do I feel 'out of it' but I couldn't string together a coherent sentence last night when my husband woke me up reminding me to disconnect my med.  Sounds like a good time, right? I will be talking with my doc later today to decide whether we should give this antibiotic another day to see if these side effects decrease or discontinue this drug as well.  This could easily bring me down emotionally but I'm holding on tight to some nuggets of joy I felt on Sunday. All have one thing in common: kindness. First, when Myles came to visit me he insisted on rolling my oxygen tank for me. It was something tangible he could do to feel like he was helping me ...

Still waiting on one lab test, but I might be going home today. I'll update the bottom of this post when I hear officially.  I've still got my work cut out for me, but there's no place I'd rather put in the work than home sweet home.  This hospital stay has been a sobering one for sure. The significant lung changes seen in my last x-ray were once again driven home, as well as the irreversible damage being done when my oxygen dips below a certain point and I'm not wearing oxygen to compensate (not entirely my fault, I no longer had oxygen at home to wear.)  I can't help but wonder how this happened. I had a fairly healthy year, exercised almost every day, took all my meds and use my respiratory vest religiously.  The pic above (ironically taken last week) feels appropriately symbolic:  i t's a little gloomy to hear those things yet my body is still working hard trying to stave off the storm, much like the sun is fighting through the clouds in th...

No matter where I am, seeing the sun rise or set always fills me up with peace and joy. I'm so lucky to have a room where I can see the sunrise and the reflection of the sunset in the city skyscrapers.  They remind me just how small I am. That each new morning is a gift. T he magnanimous power of a force greater than all of us.  That each sunrise is a gift for surviving another day in a crazy world. It never gets old! Anywho, yesterday was a good day, despite my allergic rash arriving with a vengeance (SO ITCHY!). It was a day filled with people who had great energy and that's all I could hope for. Today's people have had great energy too, which I need to combat my zombie-like energy from all of the benadryl.  My oxygen is still dropping quite low when I walk so I have to go back on oxygen whenever I walk around, which is a bummer, but without it I'm doing damage to my lungs.  I didn't get much sleep last night, but I got some and some is bett...

Happy new year friends! For me, day 1 of 2019 was emotional but great. Myles, my niece, and I went for a walk at my favorite spot, I spent time with people I love, and I laughed until I cried.  The night before I head into the hospital is always especially hard on Myles and this time was no exception. In addition to shedding a few tears and begging me not to go (or to take him with me) for an hour straight, he wrote me this letter. If you zoom up close to the drawing at on the front, it's heartbreaking. Front Back My first night here in the hospital sucked. My line went very well but the hospitalist (an internal medicine doctor that works inpatient) didn't even come by until 10:15 pm, which meant that I couldn't start any medications and didn't get a wink of sleep until well after midnight. He also had an awful bedside manner and didn't listen to me whatsoever.  I was so exhausted, I'd already missed most of my meds, and he couldn't e...