My Melmoirs

Home is where my heart is, and boy am I happy to be here!  I came home from the hospital over the weekend, on pain meds and oxygen. But in true "Melly style", my stay in the hospital was anything but straightforward and I kept the docs on their toes -- it is my job after all! In addition to the embolization recovery, I also developed  pleurisy  and they suspected a blood clot in my lung. Each of those three issues is painful in their own right and I found myself dealing with all three at the same time. Oh, and did I mention all three were in the same lung?! Simply put, it sucked!   The good news is that by the time I left the hospital my oxygen "at rest" had stabilized, so I've only needed oxygen when I'm standing up. When I got home the pain was still the primary issue but luckily it's lessening a little each day. Now my biggest challenge is breathing. My breathing is very labored and it's hard for me to hold a conversation without stoppi...

Hello everyone. Just a quick update that the procedure went well and Mel is in recovery. It took about 6 1/2 hours under conscious sedation (general would've been too risky.) Her last embolization focused only on her right lung, so this time they worked solely on her left lung.  Now comes recovery.... she’s got this! I’m also going to leave my email address here odilia16@gmail.com in case anyone needs it. Oh and I apologize, I don’t have an ounce of Melly’s talent in the writing department. Sorry🤗 Love, Didi **Update: Recovery has not been easy for Mel. She's been in excruciating pain and unable to keep and liquids and/or oral meds down. More details to come tomorrow...

[Sigh] Thursday's appointment was a long one. There was much discussed, more testing ordered, and a few plans made. The good : My PFTs (breathing tests) were up a few percentage points, my weight was up a few pounds, and we knew for sure it was time to give my body a much-needed break from antibiotics.  My doc decided it was also time to pull my IV line. The bad : I was literally in Interventional Radiology, lying on the bed waiting for my line to be removed when [BAM!] I had another episode of hemoptysis (bleeding from the lungs). I immediately emailed my CF team and it was decided I would keep my line in a while longer and consult with my IR doc about another surgical procedure (pulmonary embolization) to manually stop the bleeding in my pulmonary arteries. The ugly : After reviewing the frequent bleeding I've had over the past month, the amount of blood I've lost (based on blood work), and my most recent CT scan, it was decided that another embolizati...

The struggle has been real folks. My first week home was anything but easy. In fact, it was probably one of the most emotionally challenging weeks during these 11+ weeks of IVs.  When I got home from the hospital last week, not only did I feel physically terrible but I had two more episodes of bleeding from my lungs last weekend, one of which was another big one.  This was discouraging, frustrating, and disappointing.  For the first time in years, it was hard for me to see the light at the end of the tunnel.  Thank goodness I have an amazing team and a hematologist who answers her pages on a Sunday. She added a second clotting medication (commonly used with hemophilia) to help stop the bleeding. There's been mention of another surgical procedure (pulmonary embolization) if the bleeding continues once I finish the clotting meds, but I am desperately hoping that's not the case! The thought of another embolization makes me feel fearful and anxious. But this i...

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...

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 ...

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...

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...

Well my friends I wish I had better news, but unfortunately the bleeding from my lungs has only increased and I will be admitted to the hospital this evening.  My tunneled line will be placed tomorrow instead of Monday and will be done under heavy sedation.  I will meet with the CF team tomorrow to figure out what, if any, testing will be done and go over a plan.  Right now the most important thing is that the bleeding stops.  If it doesn't, I will be looking at another pulmonary embolization (surgery to stop the bleeding.) Of course I will keep everyone posted, but in the meantime please feel free to cross your fingers, send me some positive energy, prayers, luck, etc.  It can't hurt, right?  The upside is that my fave docs are on tomorrow and I'm in the best hands possible...always a silver lining :) Love to all.  XO

My little sis got married!!  It was a spectacular night and a great time was had by all.  The bride and groom were simply stunning, as was the location and the whole event was overflowing with sheer love and happiness - my favorite kind of day.   It's amazing what a little adrenaline can do to the body because I physically felt the best I have in years and I barely coughed at all.  It was an awesome reprieve from my day-to-day and I took full advantage; I danced, I laughed, I caught up with awesome friends and family, and even indulged in little wine...okay, maybe a little too much.  But I had the best time! However the next morning I came crashing back to reality and unfortunately I have been hemoptysizing (coughing up blood) every day since; today being the 4th straight day.  So my perfectly planned IV antibiotics & sinus surgery have had to be moved up a lot sooner.  Both my CF team and I are hoping that the IV antibiotics will stop the ...

Tomorrow (Wednesday) is a big day:  it's the first time my 'little' sister will be having her first surgery/procedure.  Ever.  Even though we share the same CF genes, our journeys couldn't possibly be more different and for that I have always been grateful. Unfortunately her lungs will not stop bleeding (hemoptysis) and tomorrow she will be having a procedure called an embolization to block off the bleeding artery/veins.  If this sounds familiar to you, it's because I have had it done many times.  But being on this side of the procedure feels innately uncomfortable.  This is a part of 'the club' I never wanted to share with her and I would have it done 20 more times if it would prevent her from having to do so.  I know that she is far tougher than even she realizes and that she will be fine, it just hurts my heart to see her having to enter this world. I digress.  The main purpose of this post is to muster up all of the positive energy, though...