2 year update

It’s been a LONG time since I wrote a health update. That’s partially been because, thank G-d, things have been going pretty smoothly! That doesn’t mean NO complications, just nothing major. Honestly, just maintaining a healthy baseline involves a bunch of medical stuff. I have to get bloodwork at least once a month, and sometimes more often if something is out of whack and needs to be monitored a little more closely. That something is usually either my Tacrolimus (anti-rejection med) levels being off and requiring a dosage adjustment, or my kidney levels being worse than usual. My kidneys have been struggling a bit, which is expected thanks to the Tacrolimus, but thankfully are still chugging along at a reasonable rate. We recently discovered that they still respond well to extra hydration, so if I drink A TON of water (which is really hard for me!) my levels are almost normal. Aside from bloodwork, I have a bunch of appointments that I need to have on a regular basis. Transplant clinic at least every 3 months, endocrinologist every 6 months, dermatologist at least annually, ENT at least annually. Then there are the minor procedures, such as getting my feeding tube changed every 6-12 months. I no longer require supplemental nutrition, but I DO rely on the feeding tube for additional hydration overnight to maintain my kidney function. Sometimes I’m on top of changing it and it’s just a routine appointment, and sometimes it gets slightly dramatic, such as a few months ago when I was overdue for a change and then accidentally yanked it half out of my stomach, resulting in it painfully sticking out of me overnight until I could get in for an emergency appointment the next day. I also have a Reclast infusion that I get once a year to try to offset the damage that long-term steroid use has done to my bones. And of course aside from all this, I take a ton of medication every day to stave off rejection and keep my body functioning. So even when things are medically calm, there’s still a lot going on!
 
I think the biggest complication that I’ve had was at a dermatologist visit last year. The risk for all cancers goes up significantly after transplant due to the anti-rejection meds, but the risk of skin cancer is PARTICULARLY high. At my last appointment they found that 3 small bumps on my face were pre-cancerous and needed to be removed. It wasn’t a big deal at all, the doctor froze them off during the appointment and I just had to deal with some unpleasant blistering afterwards, but even pre-cancerous was still a scary thing to hear. I have to be very careful about sun exposure and check my skin regularly for anything unusual, and of course keep up with regular dermatology appointments to keep an eye on things.
 
There’s another reason I fell out of writing health updates though, and that was thanks to Trikafta. Trikafta is the groundbreaking CF drug that came out shortly after my transplant. My doctors wanted me to take it to improve my miserable CF sinuses and reduce the risk of infections dripping down into my lungs. The first time I tried taking it about a year after transplant, I got REALLY depressed and fatigued, so we discontinued it. We decided to try again at a lower dose in July 2022. I seemed to do better at the lower dose, but when we tried to increase it I immediately had a bad reaction, so we dropped back down to the initial dose. I still ended up struggling with depression and extreme fatigue, but wanted to stick it out and see if the side effects faded with time. In January of 2023 we tried adding an anti-depressant to see if that would help with the side effects and allow me to stay on Trikafta. By June of 2023, however, it was clear that the depression and extreme fatigue were not going away. I decided it wasn’t worth being miserable and dysfunctional just to maybe improve my sinuses, so we discontinued the Trikafta and have no plans of trying it again. It took a WHILE for things to improve even once I stopped taking it, but thankfully I’m doing much better now. I still struggle with fatigue, but it’s back to the level I was dealing with before Trikafta, and my mood is MUCH better. It’s a shame that I waited so many years for a drug that targeted my genotype, only to be unable to tolerate it. At least it makes me feel a little better though that I didn’t end up missing out on anything by getting a transplant before it came out.
 
My only other “complication” is that after not catching any infections for over 4 years post-transplant, I managed to catch 2 colds this year, one in January and one in April. My symptoms were relatively mild, but with any infection there’s always the risk that it could trigger rejection. Thankfully I did NOT have any rejection after either illness – and in fact have not had any rejection since my transplant! Hopefully I can continue that streak, and also keep myself infection free for at least the rest of this year!
 
That’s pretty much what’s been going on the last couple years. Now that I’m finally caught up, I’ll try to be on top of writing health updates more regularly – but let’s hope I won’t have much to talk about!!

More procedures

It’s probably not a good sign when a medical professional looks at your CT scan and immediately says, “Oh you poor thing!”

I saw the ENT on Monday to check on my terrible sinuses. They’re always bad, but over the last few months I’ve been coughing a LOT more, which may be due to post-nasal drip. I’ve also completely lost my limited remaining sense of smell. Additionally, I’ve had recurrent infections in my lungs, which may be coming from my sinuses. The CT scan showed that my sinuses are all blocked up and full of polyps, which is kinda standard for CF. Between the ages of 19 and 30 I had sinus surgery 4 times to clear things out, and I only stopped due to feeling that the last couple surgeries didn’t give me enough relief to be worth the difficulty. I mostly just got used to having miserable sinuses, and at this point I haven’t had surgery since 2009.

My transplant doctor has been talking about sinus surgery to clean me out and reduce the risk of lung infections. The problem is that there’s no guarantee as to how much surgery will actually help me. It’s not the worst surgery in the world, but it’s definitely not fun, and it can take months for everything to heal up and see any results. A big deciding factor for me was my sense of smell. The ENT said the damage might already be permanent and surgery might not help, but not having surgery guarantees that the damage will become irreversible. He also said that based on my CT scan, I’ll definitely feel SOME improvement from having surgery, it’s just unclear how much. The only thing we can do is try and see what happens, so I’m currently scheduled for sinus surgery in July.

Even though it was my choice, I’m having all kinds of conflicting emotions about it. For one thing, any surgery is a big deal when you’re immunosuppressed, and it’s typical to get prophylactic antibiotics. So I’ll be hospitalized for (hopefully only) one night afterwards for observation, and then sent home with a PICC line for a few weeks of IV antibiotics. At this point it’s been over a year since I was on IV antibiotics, which is wild considering I used to get them 3 times a year for a month or 2 at a time! So on the one hand I’m super grateful for how much healthier I am, but having to do IVs again is stirring up old memories and fears, and part of me is bitter about having to revisit that part of my life. It’s also hard to force myself to go through what I know is an unpleasant procedure and recovery process without knowing how much benefit I’m actually going to see. It’ll be extremely upsetting if I go through all this and it doesn’t end up improving my quality of life. But there’s no way to know what the outcome will be, so I just have to try and hope for the best.

It also feels like my life these days consists only of sitting at home or going out for medical appointments and procedures. Covid life is definitely getting to me, particularly because no matter what the governor says, I’ll still be on my own personal lockdown due to being in a high risk category. As everything opens up I’ll need to be even MORE cautious, as there will be more spread in the community. It’s frustrating to go through all that transplant entails only to have life look dismayingly similar to how it did back when I was sick. It’s wonderful to be able to breathe, but it would be nice to experience more from life than just managing medical issues.

Speaking of which, tomorrow is bronch day. Which means I had to go get a Covid test today, because you can only go into the OR if you’re cleared. So THAT was fun. Apparently I’m currently on the monthly Covid test plan: this month for the bronch, next month for sinus surgery, and the month after that for my Pulmonary Function Test (PFT). Boy do I know how to party!!

And so my life of lockdown and medical shenanigans continues. Can’t wait for the day that I get to leave at least some of this drama behind and finally get back to LIVING!

"Let THEM stay home!"

A friend posted a diatribe about those who say “If you are sick stay home,” and how they don’t account for the fact that MANY people don’t have the option to stay home if they want to pay their bills and keep their jobs. I definitely agree with that, and I think it’s terrible that our society prioritizes the employer’s bottom line over protecting the basic health, safety, and well-being of the masses. However, my friend ended by saying that the idea of a person staying home from work because they might be a risk to the elderly and immunocompromised was “preposterous,” and said “Let THEM stay home!” And with that flippant comment I was suddenly smacked in the face with how few people actually understand what it’s like to live with a significant health issue, and how very easy it is for society at large to consider me a disposable outsider.

I stay home. I stay home ALL THE TIME. In fact, my struggle is mustering up the courage to LEAVE home, and deciding how much risk to my physical health is worthwhile to protect my mental health and make life actually worth living. I spend SO MUCH mental energy worrying about infections and coming up with strategies to minimize my risk. I skip so many activities, avoid so many situations, due to living in fear for my health. Then, of course, there are all the times that I have no choice but to leave home for things like doctor’s appointments, or picking up prescriptions, or going food shopping. And I’m luckier than many others, who have to go to work, or who don’t have a car and have to take public transportation. But even if I never left my house, I still couldn’t avoid potential exposure to germs. I don’t exactly live in a hermetically sealed chamber here. Despite my best efforts, I could get sick and die at any time.

Then there are the times that I finally do make the decision to actually leave home for a change. First there’s all the worrying and evaluating and risk assessments that precede the decision. Then there’s all the anxiety that accompanies me during the outing, as I try to minimize my exposure and pay attention to the health of everyone around me, the cringing every time I hear someone cough, the wearing of masks and dousing myself in hand sanitizer. I’m a social person, I get joy and energy from being with friends and socializing with others. I NEED to get out into the world and be with others sometimes if I want to stay sane. But there’s a shadow over every social outing, anxiety every time I leave the house, constant second guessing whether I’m making the right decisions. I can never just relax and fully enjoy myself anymore. It is utterly exhausting.

“Let THEM stay home!” How easy to say when you AREN’T the one staying home! When you aren’t the one trapped inside the same four walls day after day, month after month, because what’s outside those walls may kill you. Yes, I want to stay alive, but just BEING ALIVE is not enough to sustain me. Sometimes I make the choice to allow a certain degree of risk into my life, because these freedoms and interactions are part of the reason I worked so hard to stay alive in the first place. I didn’t go through all the trauma and drama of a double lung transplant to sit inside all day and watch the world pass me by, I did it to LIVE! I’d rather die from a little bit of living than have a long life of safe emptiness.

I don’t expect the world to accommodate me. In fact, I know it won’t, which is why I’m constantly accounting and accommodating for the careless majority. But I don’t believe it’s  unreasonable to think that it would be nice if more people occasionally thought about what it’s like to live life with a health condition or disability, and maybe, just MAYBE made a little effort to accommodate US for a change. Just imagine if people took catching and spreading a cold or the flu as seriously as they’re currently taking the Corona virus. If people were ALWAYS careful to cover their coughs and wash their hands and prevent the spread of infection. The world would be so much safer, not just for me but for everyone! But most people don’t take a cold or the flu seriously, because they have the luxury of knowing they won’t die from it. The fact that there are plenty of people out there who can and DO die from those and other “minor” infections every year apparently doesn’t matter when these people are an invisible minority. Let me tell you, feeling like you’re just a disposable statistic REALLY sucks.

So no, I don’t blame people for going to work while sick when their employers give them no other choice. I think it’s wrong, but I blame the employers, not the employees. At the same time, don’t throw all the onus on people like me to keep ourselves safe. We’re in the minority here, and it’s literally impossible for us to protect ourselves from all of the rest of you. Would it kill people to try to have some awareness and consideration for those of us struggling with health issues, and to make whatever accommodations they can to minimize or prevent the spread of infection? Because I guarantee that not doing so WILL kill some of us.

I'm a professional, really!

Getting ready to pretend to be a Real Social Worker and go to an actual CEU training! Partially because I'm trying to get my head back in the game, but mostly because I've been a liiiiiittle distracted this licensing cycle and have only done 3 of the 30 credits I need to complete by the end of August. Really praying no one in the room has a cold... Also, I'm a little intimidated about being the blue haired freak in a room full of professionals!

Being human

Sometimes, things are hard.

Of course, things aren’t nearly as hard as they were a few months ago. Which then makes me feel kind of guilty any time I feel down or cranky or anything less than grateful. I feel like I should be on a permanent high just from being alive, and (mostly) able to walk, and (also mostly) able to breathe. Life is SO much better and I am SO much more comfortable now, so why should I ever be anything less than happy?

But apparently, no matter how I may try to deny it, I am only human after all. And even aside from complications, post-transplant life involves some major mental and emotional re-adjustments. There are the emotions around knowing that my life was saved due to someone else’s death, and that while we are celebrating, somewhere out there another family is grieving. Additionally, for decades I didn’t expect to have much of a future as an adult, and at 40 I’ve actually survived far longer than anyone anticipated. In the months and weeks leading up to transplant I was so, SO sick that I basically prepared myself to die. The future post-lung transplant is far from certain, and I still could die – but, I also could live for 10 or 20 years or more. I now have to make the sudden mental adjustment to potentially having a life ahead of me, a life I never planned for or expected to see. You’d think that would be wonderful and exciting, but it’s also kind of terrifying! I was familiar with CF life and mostly knew what to expect and how to deal with it. Now I have to figure out what post-transplant life looks like, what I can and can’t do, how to take care of and protect myself while also doing things that make this all worthwhile. A tall order for someone who didn’t expect to be here!

And then there’s the recovery process and complications. I still have some pain in my incisions and a weird band of numbness across my chest. I have multiple appointments every week, including appointments with various specialists in Philadelphia a few times a month. I’m still figuring out how to manage my new diabetic life. The joint and muscle pain make everything difficult and wear me out. I haven’t been sleeping well, at least partially due to pain, and spend a lot of my time feeling fatigued. My airways keep narrowing and being obstructed with necrotic tissue, which means repeated bronchoscopies (not fun), plus I’m wheezing and rattling for at least a few weeks between bronchoscopies (also not fun). It feels like I have a lot on my plate right now, and it’s unclear when the load will lighten, which then makes me anxious. I’m very good at what if-ing: What if the pain doesn’t improve? What if my airways keep acting up? What if I’m not able to get back to a regular exercise routine? What if I don’t get my energy back? What if I do live a long time but everything just keeps being varying degrees of difficult forever? What if what if what if!

I have to remember that I’m still early in this process, and that it IS a process, and that it takes time. I want everything NOW, but that’s not how this works. Just because things are hard now doesn’t mean they’ll be hard forever, hopefully. Hopefully 3 months or 6 months or a year from now I’ll look back and laugh at my anxieties, because the complications will have settled and I’ll be comfortable with my new medical routine. It’s hard to be patient when I’m quite literally in pain, but I just need to get through one day, one week, one month after the next, and give things time to improve. Some things have already improved in the 4 months that have passed, and I need to remember that my body is still healing and recovering from a major trauma. I can’t know how much better things will get, but I need to be confident that things WILL get better.

And I need to remember that sometimes, I will have bad days, and that’s ok too. Emotional recovery is just as much a part of this process as the physical recovery. I’m only human, and that’s ok.

Adulting

The joy of trying to catch up on 4 months of bills (mostly medical, and I haven't even gotten the transplant bill yet) and mail. Apparently the world doesn't stop just because you almost die. It's kind of amusing watching the billing letters get more strident as the months go by. Gee, so sorry my near death experience was inconvenient for your bottom line!

#adulting 

The journey

For many, many years, “breathing is overrated” was my favorite snarky catchphrase. But now I’m starting to think that I just might have been mistaken.

It’s so wild being able to breathe! So many simple tasks that were beyond me for quite a while are suddenly, wondrously easy. Things like being able to walk from one room to the next, or prepare food, or do dishes, or take a shower without being completely exhausted afterwards. It’s been months since I was able to do any of those things, and I’m so unbelievably grateful every time I’m able to get up and do something without having to calculate whether I have the oxygen and energy for it. It’s a whole new world, and I’m loving it!

Facebook tends to give a skewed impression of people’s lives, as we’re more likely to post the good instead of the bad. I think mine is a little more real, but at times I too will downplay things or try to make them look less dramatic. My previous health updates were definitely real, but I don’t think they fully encompassed how bad things got right before my transplant.

During the week and a half that I was home between admissions, things were pretty terrible. I just couldn’t get enough oxygen, and spent most of the time either sleeping or writhing and groaning in my recliner. The only time I got up was to use the bathroom, and that was a huge ordeal that sent my oxygen plunging and sapped my strength. I hope none of you ever have the experience of trying to decide whether it’s worth the effort to go to the bathroom, or if you’d rather just hold it a little longer because getting up and trying to walk is going to be so awful.

Things were even worse once I was hospitalized. At that point I couldn’t even manage walking the 5 feet to the bathroom anymore. My stubborn dignity refused to use a bedpan, so instead I had a bedside commode. And even on high flow oxygen, just getting out of bed and onto the commode was enough to drop my oxygen and utterly exhaust me. I pretty much spent most of my time looking like this:

During that time I started having “air hunger,” which meant I felt like I was suffocating even when my oxygen wasn’t too low. Thankfully they were able to treat this with oxycodone to make me more comfortable, but it was still a pretty miserable experience. I also came VERY close to needing to move to the ICU and be put on a ventilator, as my oxygen needs almost surpassed what could be provided on a regular unit via high flow. If the transplant had been even a few days later, I have a feeling I would have ended up in the ICU.

And throughout all of this, of course, I was coughing up huge quantities of thick, dark mucus. For almost 2 months straight I coughed up at least half a specimen cup every day, and some days came close to filling the cup. No matter how many treatments I did or how much I coughed out, there was always more. It was utterly exhausting.

Basically, things were really terrible. My discharge paperwork says that I came to the ER with “respiratory failure.” My lungs had just about given up, and I was – quite literally, and faster than anyone had anticipated – dying.

And then the transplant came through.

The before and after is absolutely night and day. Even while I was still in the ICU post-transplant, even with all the pain, I still felt SO much better! And as the days go by, as I continue recovering and getting stronger, things just keep getting better and better. I marvel at all that I’m now able to do, and can only imagine all the doors that will open for me as time goes on. It is truly miraculous.

Don’t get me wrong, coming out of a double lung transplant was no picnic. I woke up in the ICU with a ventilator down my throat, a nasogastric tube, 2 long, stapled clamshell incisions, 6 drain tubes coming out of my chest, a triple lumen catheter in my jugular, IVs in each arm, and a Foley catheter. I was also hooked up to multiple monitors and had wires going everywhere. Initially my hands were restrained to prevent me from pulling anything out. Once I was alert I wanted to communicate, but couldn’t because of the ventilator. We tried to use a letter board, but unfortunately didn’t realize that my vision was off. When I thought I was pointing at one letter I was actually pointing at something else, much to everyone’s confusion. Which is why that brief post I made post-transplant took 2 hours to write! Things went a little better when we got a pen and paper, and of course once the ventilator was removed I was eventually able to talk again.

Even once I got out of the ICU and onto the transplant unit, I was still very incapacitated. I was very weak and spent a lot of time sleeping. The painkillers often knocked me out or made me loopy, so I wasn’t exactly up for visitors. I had to relearn how to walk, how to swallow, how to be a basically functional person again. Breathing was absolutely wonderful, but it was still a very intense time.

I still have a long road ahead of me. It will take months for my incisions to heal, and some of the nerve damage may never heal fully. I will spend the rest of my life with the terrifying, unpredictable specter of rejection hanging over my head. My immune system will always be low in order to prevent rejection, so I must forever be extremely germ conscious and do everything possible to avoid getting sick. My days will be filled with pills and treatments to keep me going, including the whole new world of managing diabetes. And of course, though my lungs now have different genetic material and are completely CF-free, the rest of my body still has CF, so I still have non-respiratory CF symptoms that need to be managed.

But, hopefully, it WILL be a long road, with plenty of time for all kinds of adventures that I thought were beyond me. Hopefully I will have the chance to blaze through all kinds of open doors in joyous victory. And no matter what happens, however long I get, the breaths I’ve taken thus far make it all worthwhile.

...but not for long

Well, I managed a week and a half before going back to the hospital.

Going home ended up being MUCH harder than anticipated. The in-home oxygen concentrators were strong enough to keep my oxygen up while I was at rest, but not during exertion. I had oxygen tanks that were stronger, but I couldn't rely on them because they'd get used up too fast and I needed to save them for going to appointments or for extra-exerting activities. Unfortunately, even just walking to the bathroom was enough to drop my oxygen levels. Not only was this uncomfortable and utterly exhausting, it also meant that I was way less functional than anticipated. I ended up spending most of my time either in bed or on the couch or recliner because I couldn't cope with doing anything else. A lot of the time just talking was difficult because I was struggling so much to get enough oxygen. I was still bringing up LOTS of thick mucus, which meant frequent coughing fits, which was another thing that all too often sent my oxygen plunging. I also woke up coughing every hour or two all night every night, so sleep wasn't going well. And on top of all that, I was dealing with nausea and almost no appetite. I basically spent most of my time curled up in a miserable ball, with the occasional hour or two of feeling somewhat better.

Katherine has been a trooper and a godsend. She's basically been waiting on me hand and foot for the last week and a half, while also having to cope with all the emotions involved in watching me be an utter train wreck. I truly don't know what I would do without her!

I was very torn, because on the one hand I wanted to be in the comfort of my own home, but on the other hand it was so very hard. We already knew within the first few days that I wouldn't be home for long, because it was clear that my oxygen needs would soon be too high to be maintained outside of the hospital. What we did not expect was for my oxygen to abruptly plummet yesterday. For reference, I was discharged on 7 liters of oxygen at rest, which kept my oxygen level around 94-96%. Anything below 90% is not good. Yesterday I used tanks to put myself on the highest oxygen level I could get at 15 liters, and I was still suffocating. After a few emails back and forth with my doctor, I was off to the ER.

Once we arrived I got to see what happens when you come to the ER with a REAL emergency. My oxygen on 15 liters was below 90%, so they immediately whisked me back to the ER's Resuscitation and Critical Care Unit, which was quite the intense experience! There were around 10 doctors and nurses waiting as they wheeled me into my bay, and I suddenly had a bunch of people bustling around and hooking me up to various things all at the same time. One of which was high flow oxygen, which helped IMMENSELY. Within half an hour I felt more awake and functional than I have since leaving the hospital. It was SUCH a relief!!

Unfortunately, high flow oxygen can't be done at home, which means I will now be inpatient until transplant. It also isn't exactly comfortable, though it's definitely more comfortable than constantly feeling like I'm suffocating. On the plus side, being on high flow bumps me way up the list, so hopefully I won't have to wait too long.

So here I am, back at HUP, my home away from home. This time I even get a special room with fancy monitors near the nurse's station so they can keep a close eye on me. Because we all know I like to bring the drama!

They see me rollin'

I’m still dealing with what I’m now thinking of as Leaky Pipe Syndrome. Thankfully I haven’t had another full bleed, but I keep randomly streaking. Yesterday I finally managed 48 hours blood-free and resumed one of my treatments, only to streak at the end of the day and be forced to start all over again. Previously we wouldn’t react so strongly to just a little streaking, but my recent history of Big Dramatic Bleeds makes everyone anxious so we’re being very cautious. I have to keep reminding myself to Be Very Chill and not do anything to elevate my heart rate, which these days basically means not doing anything at all exerting. I am not enjoying being so limited and feeling this fragile.

Today I got my first experience using a motorized cart at Shoprite. I really wanted to actually go food shopping instead of trying to figure out what I needed online, but I also knew it definitely wasn’t safe to do that much walking. So I swallowed my pride and grabbed a motorized cart. I did feel awkward about looking perfectly healthy while puttering around on a scooter though, so I kept my oxygen on the whole time even though I didn’t really need it once I was sitting. I figured no one would question the girl with the nasal cannula. I managed to only run over Katherine’s foot once, and though I ALMOST knocked over a couple displays, nothing ACTUALLY ended up falling. Using the scooter ended up being a weird combination of fun, annoying, and occasionally slightly terrifying. Those things are harder to drive than you’d think!

Katherine has been amazing through all of this craziness. Since I’m mostly incapacitated, almost all the household tasks have fallen to her. I can put together a shopping list and zoom around on my scooter picking things out, but she’s the one shlepping it all home and putting everything away. Not to mention cleaning, and laundry, and just about all the things that keep a household going. I feel terrible about not being able to contribute much, but she does it all without complaint and reassures me that she’s happy to take care of things. I’m not sure how I got so lucky!

Of course, she did get entertainment value watching me almost take out an entire cereal display with my scooter, so maybe it’s a fair trade. Here’s the photographic evidence she took of my Shoprite experience. Maybe next time she’ll get video!

One more week

As I predicted, we’re keeping me on IV antibiotics for another week. I was surprised, however, to hear that my doctor originally expected to send me back into the hospital at yesterday’s appointment. Fortunately, I looked better than she anticipated, and my chest didn’t sound any worse (though it also didn’t sound any better). She would have stopped the IV antibiotics yesterday, but I could use the extra support while recovering from the recent bleed, particularly since I’m still holding chest PT and half my nebulizer treatments. If I can just stay blood free for 48 hours I can gradually resume those treatments and get back on track with clearing the congestion out of my chest.

The good news is that there is FINALLY an end in sight. As long as nothing stupid happens within the next week, we will finally stop the IV antibiotics next Friday. Depending how I’m feeling we might continue the IV hydration, but we might also just give me a break from everything, since by then I will have been on IVs for more than 8 weeks. The nice thing about the port is that giving me a break is a viable option since it’s so easy to just re-access it and resume IVs if necessary. Though I wish I had seen a stronger response to treatment, I am very much looking forward to moving on from endless IVs and trying to put my life back together.

Yesterday, for the first time, I went into a store with my new oxygen concentrator. It was an interesting and conflicted experience. I definitely appreciated the fact that the oxygen made it easier for me to move around without huffing and puffing. But I also had conflicting thoughts and feelings about making my until now mostly invisible illness suddenly and inescapably visible. On the one hand I appreciated and on some level even enjoyed the validation of having something external to match the internal struggle. There have been many, many times over the years when various every day tasks were extremely difficult for me, and yet you would never know it from the outside. It can be very frustrating to push through your day feeling like a train wreck while looking like the picture of health. On the other hand, it felt very odd to walk through the store with a blatant sign of severe illness strapped to my face, knowing that everyone who saw me instantly knew that something was very, very wrong. I found myself wondering what people saw when they looked at me, this baby-faced girl afflicted with some terrible mysterious illness, a tragic image to tug at your heartstrings. I wasn’t entirely comfortable with strangers being able to immediately categorize me as the sick girl without knowing anything else about me. But that won’t stop me from living my life and using the medical supports I need to do so. It was an interesting experience, and I’m sure I’ll get used to it with time.

Hopefully my lungs will behave themselves and stop. freaking. bleeding. so I can get back on track with treatments and exercise and continue clawing my way back to health!

Multitasking: CF Edition

That moment when your afternoon IV antibiotic coincides with grocery shopping. Just shooting up in Shoprite, no big deal! #CFLyfe

Enough already!

Oh for %@&#$ sake…

Yesterday I pulled myself together and left the house to run a few brief, low-key errands. I walked slowly in two stores carrying nothing heavier than my purse. I didn’t do anything that should have been overly stressful for my body. But after leaving the second store, before I could make it to my 3^rd and final errand, I suddenly started coughing up blood again. So there I was, sitting in my car in a random parking lot, spitting into a cup, hands and face streaked with blood, praying that no one would notice me and freak out. Fortunately I could tell that it wasn’t going to last long, and 3 minutes and 20 mL later it was over.

You know your life is weird when your first reaction to coughing up blood is to be immediately, over-the-top FURIOUS. If I had the energy or lung capacity I would have been swearing at the top of my lungs. Instead I had to be content with raging inside my head and in my text messages to poor Katherine. Since it was a relatively small bleed, once things settled I was able to clean myself up and drive home, and I did not need to go to the hospital. But now I need to once again hold various treatments to avoid causing further irritation to the wound. And apparently I need to basically put myself on house arrest for the rest of the week until I’m more certain that everything has healed.

I’m not really sure how I’m supposed to move or kasher a kitchen when I can’t even lift anything or leave my apartment. It has been an extremely frustrating month, with no end in sight. I’m usually pretty zen about most of this stuff, but my patience is wearing thin, and I am not a happy camper. Here’s hoping this was my lungs’ last hurrah for this round and that I can get back to my bizarro version of normal life soon.