My Melmoirs

According to our culture, this is the most wonderful time of the year. But what happens when things aren't so wonderful? It can be hard. It doesn't matter whether you're having a hard time physically, emotionally, spiritually or all of the above, as the world carries on around you and the hustle and bustle of the season leaves little time for meaningful connections with others it can leave you feeling really isolated. I can relate because the past two weeks have been a little challenging. Despite being on IV antibiotics for 11 days, I have continued to slip backwards. After the first week my PFTs dropped 8% and my symptoms were unimproved/worsened. We had decided to give the meds a little more time to work, but now it's clear that this medication cocktail isn't doing the job, so we are changing one of the meds and hopeful that will work. At the very least it will be better than eggnog.  It's a little disappointing because I had the expectation to be i...

...but the plummet is rarely as fun. It was the perfect recipe for my decline: Coming off of the study drug + all the germs Myles was bringing home from preschool. I didn't stand a chance. For one month it's been a slow but steady downturn. Despite our efforts with oral antibiotics it's time for the big guns, IV antibiotics.  Tomorrow (Thursday) I will go to have my tunneled line placed with sedation. The great news is that 1) my favorite IR doc will be doing the procedure and 2) my PFTs are stable enough that they are allowing me to dodge a hospitalization and do all of my IV antibiotics at home. Double score! As far as restarting the research study, unfortunately this course of IV antibiotics will delay me until at least mid-February. While it would be luxurious to restart the study sooner, it is more important that I focus on my long term health and getting better . I will be on the IV antibiotics about 3 weeks, which will have me concluding 2015 with the ant...

I have a little secret to share. Normally I keep all of my wishes to myself, but I will make an exception. It might not be something you want to think about, but it's a genuine peak inside of my brain. Primarily my wishes are for others, but for some reason when I turned 35 I began wishing for another 15 years. Maybe because 5 is my favorite number...or because 50 seems like a good, even age...or because Myles will have graduated high school by then...but mainly because that felt as far as I could push the limit without being too greedy. In an attempt to will my wish true, the other day as I was meditating with every breath in I would wish Another 15 years and with every breath out I would think Thank you for the 35 . Before I knew it I was overwhelmed with a ginormous amount of gratitude. My mind raced to the multitude of lives lost each and every day. You can't watch 5 minutes of the news without seeing lives lost to tragedy, illness, or horrific acts of violence--...

Eight weeks have gone by in a flash and just like that, phase 1 of my drug trial is over. All in all I have to say that it went really well, if not pretty darn great! When I first began eight weeks ago I noticed an immense difference within a just a few days (blind as to what I was on). In hindsight I've realized that it was partly adrenaline since I'd been waiting for that moment for so long and was convinced this new drug would be life-changing. The adrenaline wore off once I began having my usual health 'hiccups': I still had my joint pain and some bleeding from my lungs, but the bleeds were much smaller and contained. I still caught colds/viruses, but I was able to rebound in a short amount of time. Normally those things would be detrimental and my whole body would go haywire, but on this study drug I felt almost like a 'normal' person getting sick and getting better. Overall I had more energy (thus able to exercise more), had less exacerbations, be...

Anyone who lives in New England knows how gorgeous the fall foliage can be. It is my favorite time of year to drive to/from Boston and today as I was driving home, taking in the beauty of it all, I found myself thinking What a tease--how can something so beautiful go by so quickly?! Then I got to thinking that the beautiful fall foliage is a lot like life itself; hear me out... In spring a bud forms and a leaf soon emerges, exciting, new and cute, just like a baby being born. During its short lifetime a leaf is vibrant, green, and pliable, withstanding all of the weather/challenges blown its way...much like we are. As the leaves age they become their most beautiful; dazzling with color and ripe with experience. This is how I view our 'older' generations: rich with experience and the wisdom that comes from it. I would love to see our older generations celebrated and revered more like we view the foliage as opposed to overlooked and undervalued. Ultimately the leaves ...

With the holiday season rapidly approaching (slow down, will ya?!) most of us will rack our brains trying to find a different yet special gift to give someone. Of course the best gifts we can give are our love and our time, but those are hard to wrap up in a pretty bow. I want to share a unique gift idea that is priceless and often overlooked: Photo sessions/gift certificates. Yes, they have monetary value, but the memories that come as a result are truly priceless. I speak from experience because I have been lucky enough to have been on the receiving end of such a beautiful gift and it's the best thing I could've ever wished for (aside from world peace and cures for diseases.) About 2 months ago we had the privilege of having a photo session with MaggieJill Photography, but it was so much more than just posing for pictures and holding still for awkward smiles. We had the best time and made the most glorious family memories that will last us our lifetime...not to menti...

By the skin of my teeth I made it to Day 1 of the trial and was able to start yesterday!  It was nerve wracking right up to the last minute as I currently have a sinus infection that almost delayed my start. Luckily my lungs are healthy and the infection is isolated  so they ultimately gave me the green light. Woohoo!!! Many thanks to those who have been rooting for me and crossing your fingers alongside of me...it worked! Phase One of the trial will last 8 weeks and then I'll have 8 weeks off  (no pills) before starting another 8 weeks on a different pill.  I am overjoyed to have made it into this study and realistically optimistic. I am so grateful for this opportunity and the chance to do my tiny part in helping new drugs get FDA approved.  [Side Note: Please pardon my blog's appearance as I am playing with some new looks but having technical/coding difficulties.] 

As another summer draws to a close I feel beyond fortunate that I've had a healthy few weeks...despite the usual blood clots, GI issues, blah blah blah. I've been holding my own, keeping my head above water and feeling more like myself than I have in a looooong time.  I credit my progress to a few things:  1) My GI doc figured out what was throwing my pancreas out of whack and had some easy solutions (still a work-in-progress),  2) My trusty  Xango Juice  (pricey, but it helps me every time nothing else will), and  3) Some good old fashioned luck.  The only reason I didn't write about it sooner was for fear of jinxing myself.   Not much could be better than feeling well, except that it allowed me the opportunity to take part in an exciting clinical drug trial--a trial I've been waiting over 2 years for! While I'm not allowed to go into detail about the study nor mention the drug(s) by name, I can say that it's a CF gene-specific study that ...

Ezra's Masterpiece It's been a serendipitous few days to say the least.  I wrote my last post (about needing help finding my rainbow) last Friday evening after hitting a frustration roadblock. Wouldn't you know that the very next day I felt a palpable shift and over the weekend literally 6 rainbows found their way to me (not live in the sky, but I'll take whatever I can get!)  My friends were sending me some positive vibes and it was working! With nothing physically done differently, the power of positive energy was undeniable. My spirits were on their way up and it gave me a surge of energy to get out of the house and head to a comedy show benefiting CF. With two of my besties by my side I got some of the best medicine in the world: tears-in-your-eyes belly laughs (great for the soul and your lungs.) If only there was a way to bottle up such joy, the world would certainly be a better place. The next day I was pretty wiped so I took Myles to see Inside ...

Six weeks and two days ago I started a course of IV antibiotics optimistically hopeful that after the three-week course I'd be feeling so much better and ready to tackle this summer with zest and vigor. Six weeks and two days later and I'm not that far from where I started, feeling oh so tired and downright frustrated. I honestly don't even have the energy to go into detail about the happenings since my last post but they've included 2 visits to CF clinic, a visit back to IR (where I had my embolization done), lots of tests/imaging/blood work, 2 antibiotics, 5 days of prednisone, and a partridge in a pear tree.  With another possible hospitalization and/or another round of IV antibiotics looming over me I find myself digging my heels in the ground, holding onto my life preserver with everything I have and trying to wait out this storm. Of course waiting out any storm is easier if there's an end in sight and I think that being on this particular journey for so ...

The past 4 days of this embolization go 'round all seem to blur together and my brain is still a little foggy (so forgive me for typos), but I just wanted to give a brief update. For those of you who aren't into the nitty gritty (hey, I don't blame you!) you can skip to the last paragraph for the nutshell... Thursday : The embolization went very well. They were able to successfully embolize a few different vessels in my right lung. While the procedure only took a little over 3 hours, from pre-op to the time I was allowed to move again, I was lying down for 13 hours. Between that and the general anesthesia, my body was pissed and letting me know it in the form of excruciating pain, which equaled zero sleep. And though the procedure was successful, I still coughed up some blood that night from the damage they had to do to my lung tissue in the process. Unable to eat a single crumb. Friday : More pain, including kidney pain and a jump up in my kidney function. After an ...

Riding the roller coaster called 'life' last weekend I was at a peak visiting some family in Maine. Someone must have forgotten to hit the 'pause' button though as the roller coaster continued right over the peak and plummeted right back down. During my 3rd week of IV antibiotics,  I inexplicably began to feel worse for a few days and then, at the bottom of the drop, I had more hemoptysis (bleeding from my lungs.) I went into clinic a few days ago and luckily my PFTs (breathing tests) were exactly the same as last week. That was the good news. The not-so-good news was that the team and I agreed that the antibiotics were no longer helping me so I discontinued them and had my IV line pulled. The loopty loop of the week came two-fold: 1) One of my two all-time favorite CF nurse practitioners broke the news to me that she's leaving the department (my other fave left a few years ago.) and 2) The decision has been made to proceed with another  emboliz...

From the moment I woke up this morning, my intuition was speaking to me loud and clear. It was telling me that there will be no surgery this Monday and that that's a good thing.  Luckily I haven't had any hemoptysis all week, but I was still very unsure what was going to happen up until yesterday. I spoke to my team this morning and they agreed that it was best we cancel the embolization for now and watch and see what happens from here. I'm still on IV antibiotics and will be for about another 2 weeks. I've still got a ways to go, but  I'm also very lucky that I turned the proverbial corner today and felt better than I've felt since I've been back home.  I am completely at peace with postponing the embolization...now quick, knock on anything you can find :)   

It has certainly been an interesting journey since my last post. First and foremost I am home with my boys...for now. There's a lot of ground to cover so I'll try summing it up to the best of my ability. The Physical After the consult with my IR doc last week about whether or not to do another embolization, he was leaning toward yes for a few reasons. While there is no clear cut answer as to whether my pulmonary bleeding is being caused by infection or anatomy (enlarged blood vessels) he and I are both thinking anatomy. The primary reason for doing an embolization is to prevent a larger, more serious bleed that could possibly do a lot of damage, so one thing is certain: it's not a matter of if I have another embolization, rather  when . I can admit that maybe I was a little overzealous with the aggressive resumption of chest PT and nebs--both did their job of shaking things up and getting junk out--but maybe a little too well. It really aggravated my lungs/airways and...

My favorite story from today: This afternoon I was chatting with one of the most lively, charismatic medical assistants I've ever met. Her job here at the hospital is to take patients' vital signs and assist the nurses. It may not be the most glamorous job, but she loves it and she takes noticeable pride in it. She and I hit it off from the moment we met. Despite being 12 years my senior and the very different paths that have lead us here, she and I have discovered the most unlikely similarities and values. What started out as comical banter about her choice of Hollywood heartthrobs somehow took a u-turn into a much more meaningful direction. We began talking about how scary it was for her to move to this country--to NYC of all places--from Haiti at 13 years old. She was petrified to move to a country where she didn't speak the language, didn't know her way around, and where she looked so different--and would be severely bullied because of it. One day, at 13 y...

I am happy to report that my tunneled line placement went well yesterday and I arrived in my 'hotel' room late last night. Luckily they were able to start my IV antibiotics right away and my blood work looks good. Without going into too much detail, I'm in a bit of a tricky spot here: What helps my lungs stay healthy and clear mucus (chest PT and nebs) can increase pulmonary bleeding once it's started, no bueno. In an effort to stop my lungs from bleeding, I've had to cut way back on both chest PT and nebs for a while now, so it's been like a wild spring break for all of the bacteria and mucus in my lungs. To put the kabosh on the party and get my lungs healthy again I have opted for an aggressive resumption of chest PT and nebs, which could trigger another bleed, but I don't think it will. I'm trusting my gut here. So far (knock on wood) I haven't had anymore bleeding from my lungs since last Sunday and the team and I are hopeful th...

Exhale... Unfortunately my lungs have continued to bleed ever since the CF walk--even despite being on 3 oral/inhaled antibiotics and prednisone (steroids). So it is with a heavy heart that I will be heading into the hospital to start another round of IV antibiotics this Wednesday. I'm not going to sugarcoat it, yesterday and this morning I was pretty bummed. Not about the IV antibiotics--that just comes with the territory--but rather needing them again so soon. I was  just  on them back in March/April and had such a great CF appointment less than one month ago, so this feels a little bit like a blindside.  Most of my sadness actually had to do with my little guy though. Myles is a pretty empathetic little dude and well-developed emotionally for his age, so my gut has always told me to keep an open, age-appropriate dialogue with him. I haven't hid much (and this kid asks A LOT of questions!) but I have tried to spare him the horrific visual of his mama coughing up b...

I went. I saw. I conquered. I crashed. The walk. It was not as inspiring as I thought it would be. Truth be told, it was actually kinda hard. Not in a physical sense--don't get me wrong, my bones were aching--but it was emotionally not what I had anticipated. Roughly 15 years ago research showed that close physical proximity between CF-fers was dangerous for one another and the CF community had to shift. It's dangerous in the sense that we can share certain types of harmful bacteria that "normal" people with healthy immune systems don't catch. So unless you're related, CF patients were not allowed within 3 feet of one another. A few years ago it was upped to 6 feet and CF patients were strongly discouraged from attending indoor events together and even prohibited if you've cultured a specific bacteria. Growing up I was only close with two fellow CF-fers and and both of them died before their 22nd birthdays. I was young at the time myself and seei...

This has been a perfectly imperfect week. It was filled with good stuff, great stuff, and sadness--but hey, isn't that life in a nutshell? One of this week's high points happened when I went back to my CF doc to follow-up after finishing both of my antibiotics. Much to our surprise, my PFT's completely rebounded from the dramatic drop I had just one month ago and then some! I can feel it too--I've actually been lying in bed at night relishing in the unfamiliar ease of deep breaths, appreciating it while it lasts. My doc asked me what I thought made such a big difference and for me it was a no-brainer: the "new" [inhaled Colistin] med that I have never used before--a med that found its way to me by a lucky accident. It was well worth the fight. While my lungs are holding their own, my other organs continue to give me a run for my money and the CT scan my new nephrologist ordered to look at my kidneys just so happened to show other areas for concern, includi...

Greetings beautiful people!  Time continues to fly by at warp speed and it appears to be May already.  May is a wonderful month because it's the month I was born national CF awareness month.  It's a time when the CF community stands on its soap box begging to be recognized and the CF Foundation (CFF) rallies its soldiers to raise some serious dough (believe it or not the CFF receives ZERO government funding!)   During the next few months the CF Foundation will sponsor nationwide 5K walk-a-thons, stadium stair climbs, and extreme hikes.  I will be doing my small part by walking in a local walk-a-thon May 17th.  While I am nowhere near the physical shape I hoped to be in my now, all I have to do is put one foot in front of the other from start to finish...easy peasy. Although most people walking are committed to raising as much money for the foundation as they can, my goal is more awareness-oriented.  That being said, I have to raise some money to ...