My Melmoirs

The struggle is real folks! I've been on IV antibiotics for 4 weeks now and it's been a bumpy road: several drug changes, crazy side effects, dipping PFTs, oxygen lows and anxiety highs.  All of that only to end up back where I began (minus the heavy bleeding from my lungs.) My PFTs have rallied back from their drop and are exactly the same from when I began (which is good , I had just hoped to be a little higher.) My oxygen drops are better than they were a week ago, but still dropping with exertion. And I'm still having slight bleeding from my lungs. So my doc decided I should do one more week of IVs and then we'll call it a day (which means I'll have been on IVs for both Thanksgiving and Christmas.) It's just been a lot. Lots of meds, trips to Boston, testing, home care visits and mental energy. That would all be manageable if it wasn't compounded by the holidays and all the work/energy that goes into them (I know my ladies can relate; our lis...

A little fun fact about me: I kept having CF a secret until I was a senior in high school. I was diagnosed at age 5 but didn't want anyone to know because, like most kids, I didn't want to be different . Even from an early age I also knew no illness was going to define me; having an invisible illness afforded me that luxury. When I was in elementary school the only classmate who knew was my best friend, Liz. She was sworn to secrecy and went to great lengths to help me keep my big secret. I would sometimes have to stay in at recess to have chest PT and she'd stay in with me. When it came time for 2-week-long hospitalizations I would make up stories about visiting a fictitious relative out of state and she'd help corroborate them. I was lucky to have such a loyal, fiercely protective partner in crime. She gave me the courage to trust. By the time I got to high school I'd succeeded in leading a mostly normal life. I had amazing friends, was able to keep up...

It's November and you know what that means: I'm back in the hospital. Long story short, my oxygen levels never quite rebounded after my pulmonary embolism (PE). It drops whenever I walk around so I've been back to wearing oxygen while I'm walking for a bit. No one really knows why this has been happening but my doc thought it was best to try and get my lungs into tip-top shape, so the plan was to start IV antibiotics at the end of this month. Then last week I caught a cold from Myles. My health plummeted and over the weekend I had a ton of bleeding from my lungs. The old plan went out the window and I was unexpectedly admitted to the hospital yesterday (Monday). They have me on strong antibiotics in hopes to stop the bleeding by treating the infection, thus avoiding another surgery. It didn't take long for an allergic reaction to arise so I'm also taking Benadryl around the clock. I will reintroduce my blood thinner,  chest PT, and nebs today and see...

"I can't believe you said that!" is a phrase I've heard from friends and family more times than I can count. I don't have much of a filter and say whatever pops into my mind more often than not. I do so because I know my intention is never malicious or hurtful, but rather of love and a general fondness of my fellow humans. I try to see the good in the world as much as possible and live for small talk with strangers and loved ones alike. That being said, there have been many a time I've had my foot in my mouth and cringed at some of the words that flew out before I could catch them--not because I said something mean, more so comically cringe-worthy or inappropriate, like the time I told a revered physician that I was "just busting [his] balls" (see, totally cringe-worthy!)  I may have the best intentions in the world, yet not all thoughts are necessary to share, I get it. But then there was the other day when I was checking out at Target. ...

For those of you wondering, I did in fact escape the hospital last week. I was pleasantly surprised when the docs and I struck a deal: they wanted me to stay until Monday (yesterday) but agreed to let me go home Thursday evening if I agreed to return for lab work on Monday, a no-brainer in my eyes! I actually had to have blood work taken Saturday and Monday because my kidneys were acting up when I left the hospital. But I am happy to report that my kidneys are calming down and my blood is nice and thin. Two issues down, one to go (actually feeling better).  When I got home from the hospital I crashed, both mentally and physically. The lack of sleep and chest PT/nebs caught up with me and had me feeling pretty crummy. Not to mention that I'm still short of breath from the pulmonary embolisms and that my oxygen drops when I walk for more than 5 minutes.  Mentally I began processing it all. It's been challenging at times to stay in the moment and not drift...thinki...

Yesterday was rough. For some mysterious reason my body went completely haywire causing my pain to sky rocket, my heart to go bananas, and a slew of unpleasant symptoms. I barely moved all day, which is not like me at all and made the day drag.  The best parts of my day were a visit from my hubby (with more clothes) and a relaxing reiki session that gave me a brief reprieve from the pain.  They've been drawing my blood every 6 hours to see if my blood is thinning enough. The good news is that I finally reached a "therapeutic" heparin dose last night. The very next blood draw my blood was too thin so they had to stop the heparin for a few hours and have restarted it at a lower dose and are trying to figure out the best blood thinner for me to go home on. From a CF standpoint I'm doing okay. The CT scan did show some infection so I began taking 2 oral antibiotics Tuesday night. I have yet to do chest physical therapy or any nebs since I've been here but we...

Guess where I am.... If you guessed the hospital you get a gold star! Sunday I had written about feeling "off" and going to call the doc on Monday (yesterday). Thank goodness I did because it turns out I have "several" blood clots in both of my lungs...yup, didn't see that coming! I went into the hospital thinking it would be a normal CF appointment (with the exception of x-rays and a CT scan) and was completely blindside by a hospital admission and a voyage into unchartered territory. While I have had blood clots before, I've never had them in my lungs (pulmonary embolisms.) I guess stopping my blood thinner wasn't such a great idea after all :-/ Treatment has been a little tricky because the heparin (blood thinner) that treats them the fastest has caused me to hemoptysize (cough up blood). Pulmonary embolisms may be a new rodeo for me but this complex balance of thinning my blood without causing pulmonary bleeding is nothing new. The hema...

I know I'm not alone in saying that it's been a crazy September! The summer came to a screeching halt, fall sports were underway, and kids went back to school--oh, and my world felt turned upside down. Many warned me that it would be a big adjustment when Myles started full-time kindergarten, but I totally thought I had it under control; I even gave myself a pat on the back when I didn't shed a single tear on his first day. Boy was I wrong! For the past 5 1/2 years it's been Myles & I all-day everyday and raising him was my primary purpose. So it's been an adjustment re-configuring: my "purpose", daily routine, the loss of control (for a self proclaimed control freak), and time management. I had a mental list of all the things I was going to accomplish when Myles started school, but by the time I finished my daily treatments (i.e. vest, nebs, meds, exercise, etc.) there wasn't time to get much of anything done. This made me resent the t...

This picture doesn't even do the toys justice I am overjoyed at the success of the Christmas in July Toy Drive and wanted to take this opportunity to share our accomplishment. What began as a little idea with little-to-no expectations grew into a bountiful gift of kindness and generosity. Individually we may only be able to contribute one drop into the water, but when we combine many drops together we can create a big splash! Never underestimate the power of your ideas, the ripple effect of your drop, or the support of other drops around you. Thank you from the bottom of my heart to all who participated. It felt so good to spread a little more kindness into a world that sometimes feels so hateful. Mission accomplished!

Who knew a three-letter word could be so life-altering? A few months ago I had the privilege of celebrating another birthday; a time when I reflect on the year past and the year that lies ahead.  Despite being one of the hardest years medically, the past year was a beautiful one. There were hard times, there were good times, and most times my world felt full of love. One thing that stood out the most, however, was one little question I kept asking myself more and more often: Does this bring me joy? I found myself asking this question for decisions both big and small: what to eat, what to buy, what to wear, which direction to drive, relationships, social media, etc. And you know what? It was life. changing. While there will always be obligatory duties to stay alive and pay the bills, focusing more on what brought me joy and, more importantly, scaling back on the things that didn't, truly increased the beauty of my world. It silenced the back-and-forth interna...

Guess where I am... I am elated to announce that today I am [finally] reentering the study/drug trial (woo hoo!) What was supposed to happen back on January 4th, 2016 is now happening on July 27th, but as the old adage goes, better late than never. A few weeks ago the pharmaceutical company actually removed me from the study because I had been sick for so long, but my AMAZING CF doc pleaded to get me reinstated and succeeded. I am beyond grateful for him and that my health has stabilized. To feel  good is something I never take for granted and I thank my lucky stars every day...multiple times a day. I credit my upswing to a little luck, a lot of vitamin D (from the sun of course) and changing my daily mantra to include the phrase 'I am healthy'. The mind is a powerful thing folks. Life. Is. Good.

'What is this world coming to?' is a question I bet most of us have been asking ourselves lately. You can bury yourself under the biggest rock and still not escape the tragic hate-spewing that's running rampant in the world. There's too much of it weighing heavily on my heart and I feel a desperate need to combat the negative with some positive. What's the opposite of hate and violence? Love and kindness.  Therefore let's spread more of it; like a pebble dropping into a lake, if we all make our little ripples they will combine to make a bigger ripple overall.  I sat pondering ways to spread joy and for some bizarre reason the first thing that popped in my mind was 'Christmas in July' which led to this idea... All are welcome to join me in a toy drive for Boston Children's Hospital. For the rest of July I will be collecting new packaged toys, art supplies, movies and books to deliver to the hospital. We all know it sucks to be in the hospital a...

I'm free folks! After 5 weeks of IV antibiotics, another embolization, pancreatitis, oxygen tubes, and drug-induced  hemolytic anemia  my line was pulled late last week and I am back to basics. At the end of this IV journey neither my PFTs nor my oxygen levels are where I want them to be, but I have full confidence both will come back in time. At least now my oxygen has stabilized enough that I no longer have to lug the awkward tank around with me--now there's a bonus! I had an iron infusion late last week again and will have to go back to see my hematologist to determine if another infusion is needed (it's not uncommon to need more than one.) I also need to have a sleep oxygen study done to see what my oxygen is doing at night which luckily can be done in the comfort of my own home.  After some ambivalence about reentering the drug study I now have renewed interest and would like to get back into it. For me to do so, I have to stay somewhat healthy f...

...To deplete me of any energy I had left. Okay folks, I was so hoping my next post would not be a medical one, but it's been an eventful week. That being said, I don't have a ton of energy to expend, so please join me for a lightening round if you will: Last Friday (5/27) my kidney function was steadily increasing, so they discontinued 2 of my 3 meds that were harmful to kidneys. So I was left on one IV antibiotic and added oral Cipro. I was still having a hard time recovering from the embolization and still using oxygen to walk around. Sunday (5/29) was the start of a major pancreatitis  attack; super painful and surprisingly linked to this time of year (literally something in the air?!) For 4+ days my diet consisted of electrolyte water, popsicles, and one handful of pretzels a day, but I was just happy to avoid another hospitalization. Wednesday (6/1) I got a phone call that the one remaining IV abx I was on was causing a specific drug-induced anemia and I had to sto...

Holding on to my "zen" just before surgery I've been home for a week now and am still recovering from the embolization. I may have dodged the general anesthesia bullet, but each of these procedures seems to come with its own unique recovery obstacle. This time it happens to be oxygen, that tiny little molecule that can actually make a big difference should you start to run low. Oh, the things we take for granted. A stipulation of leaving the hospital last week was that I had to come home on oxygen and use it whenever my level dipped below 90%. This has been a humbling experience in so many ways and has yet again shown me that CF can still throw me curveballs.  Over the past week, I have been able to decrease my oxygen use, but had to learn some of those lessons the hard way; low oxygen is no fun.  Yesterday was my CF check-up which went well for the most part, minus the small amount of hemoptysis (bleeding from my lungs) I had when I got home (they were so aggres...

In a nutshell the surgery was successful. It was long (6 hours) and I was conscious for all of it despite all the sedatives they gave me. I may be a lightweight when it comes to alcohol, but apparently I've built up quite the tolerance to sedatives! The reason we wanted to avoid general anesthesia this time is because not only do I have a hard time recovering, but more so because it was helpful for me to follow commands (i.e. holding my breath for x-rays, etc.) I remember absolutely everything and was talking to them throughout the whole thing, they were kind of shocked. They explored different arteries on my right side than they've treated in the past and found a ton of problematic areas to block off. They're hoping this procedure will last me a few years. I hope they're right. Last night when I finally got back up to my room, I still had to lie flat for 6 additional hours and was in a boatload of pain. I was also on oxygen because my O2 levels kept dropping with...

I was literally packing up my bag this morning when I got a phone call from my doc that the surgery is on for TODAY and that my IR doc will be coming in this afternoon to do it. I should be going down around 3 pm-ish, so wish us luck. Talk about an emotional roller coaster! But I am so grateful to get this over with and not have to get re-admitted next week. It also means I have less time to think about it and feel nervous. I was texting with a dear friend this am when we both agreed that good things really do happen when you least expect it, so surrender to 'what is' . There ya have it folks, the lesson of the day! If all goes well I'm hoping to go home tomorrow and will continue IV antibiotics at home for a few weeks. Finger and toes crossed...

Unfortunately, IR was not able to fit me in their schedule today so I did not have my embolization. While it is disappointing, I am trusting that what's meant to be will be.  I had the option of having it done tomorrow, but I would have no idea what doc would be doing it. Whereas if I wait until next Tues (5/24) my doc has offered to come in the middle of his vacation to do the embolization. (How awesome is he?!?) He's done all of my embolizations within the past 7 years and knows my anatomy better than anyone, so I've decided to wait. I'm stable enough and haven't had any more bleeding since I've been here, so I will go home tomorrow afternoon and get re-admitted next Tuesday. The silver lining is now I'll get to walk with my team in the CF walk this Sunday :) I am eternally grateful for all of the love and support in my world and will never cease to be amazed by it. I'm a lucky gal ❤️

I f you guessed stuck in the hospital, you get a gold star! This past week has been a week from hell--so unbelievable I still can't quite believe it myself . On Monday my mom, Myles and I headed up to the hospital for one of her routine appointments. What was supposed to be a 12-4:30pm visit ended up being an unexpected 9-hour day including an unexpected ER visit for a fractured femur. My mom was completely blindsided by a hospital admission and an emergency surgery on Tuesday. Long story short, she had to have a rod screwed inside of her femur.   So back to the hospital I went on Tuesday for her surgery. As if that day weren't stressful enough, I started coughing up blood J UST as transport came to wheel her down...a lot of blood! I was trying my best to hide it from my mom as to not worry her as she was going down, but moms know everything. So as we sat in pre-op I was emailing with my CF doc in hopes of avoiding the ER myself--two ER trips in 24 hours ...

Celebrating 5 years of pure joy :) One thing I know for sure is that my body is consistently and completely unpredictable. I can feel good one day and feel terrible the next without any rhyme or reason.  Case in point was the day of my CF appointment last week: Despite coughing up a small amount of blood the night before and an influx of joint/muscle pain, my appointment went well. My PFTs were stable, my lungs sounded much clearer, I had gained a few pounds and, according to my doc, I looked a lot better. We both agreed that things were heading in the right direction and that the goal was to give my body a break from oral & IV antibiotics for a while (but to continue inhaled antibiotics.) It was encouraging and I left a happy gal.  [Warning: The next paragraph is a little graphic.]  Literally the moment I got home I began coughing up more blood...for 7 hours. It was the most blood I've coughed up in quite some time and enough that I was conside...