Almost free

B”H I finally stopped bleeding and was able to gradually resume all my treatments without incident. I was scheduled to finish my IV antibiotics on Friday, but we ended up stopping a day early because the ringing in my ears got slightly worse. The tinnitus originally started back in January following a long course of Tobramycin, and gradually improved over several months, but never faded completely. We knew doing another round of Tobramycin was risky, but we also really needed an antibiotic that might make a difference. Fortunately the ringing is still mild and mostly unobtrusive, and hopefully will improve again now that I have stopped the Tobramycin.

The plan now is to finish the last of my IV fluids on Friday and see how I do at my follow up appointment on Wednesday. I had the option of continuing just the IV fluids, but after 2 continuous months of IV infusions I needed a break. Aside from Prednisone interfering with my sleep schedule, I never sleep well while on IV antibiotics since I have to run infusions every 8 hours. So 2 full months of IV antibiotics also means 2 full months of poor sleep, even after my symptoms improved and I got out of the hospital. I am very much looking forward to NOT waking up to any alarms!

I’ve been extremely fatigued this week, but I don’t know if it’s from lack of sleep or if it’s because we’re slowly decreasing the Prednisone and I’m not quite as hopped up on steroids. My appetite has also slipped without the Prednisone munchies, but unfortunately I’m still stuck with uncomfortable Prednisone bloat. If only Prednisone would let me choose my side effects! We’re currently in the process of getting me started on a monthly injection for severe asthma, which we hope will control my asthma-like symptoms enough to allow me to get off the steroids completely for the first time in 2 years. Hopefully soon I can finally say goodbye to Prednisone side effects!

The big question is what will my pulmonary function numbers look like on Wednesday after a few days without IV infusions. Here’s hoping that I managed to regain a few more percentage points, and that a few days of sleep will do me a world of good!

I've been nerfed!

In the gaming world, “nerf” is a slang term for when game developers make changes to reduce the power or abilities of a (usually overpowered) character or item. Between my affinity for gaming and the many times I’ve imagined what I could accomplish in the world if I only had my full strength, this meme seemed made for me!

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!

Frustration

Things seem determined not to go smoothly this time around.

During the last few weeks I’ve been sporadically coughing up small amounts of blood. This week the bleeds were a bit more frequent and slightly more severe, which is concerning as previously that pattern led up to a big bleed that landed me in the hospital. The normal response to bleeding is to hold some of the treatments that can be irritating to my airways, but we’ve been hesitant to do that as I’m still very congested and really need those treatments to help pull me out of this exacerbation. It’s a catch-22: the treatments could provoke a bleed, which is bad for my lungs, but holding treatments increases congestion, which is also bad for my lungs. Increased congestion can also lead to increased infection, which can provoke bleeding. There’s no good answer here, and I’ve pretty much been walking a tightrope, hoping not to fall off.

Last night things finally gave way, and I coughed up 25 mL of pure blood. Thankfully that’s not ER level, but it’s significant, and left me no choice but to hold treatments. Currently I’m under orders to hold treatments until my mucus has been COMPLETELY blood free for 48 hours. The 48 hour countdown hasn’t even begun yet, as my mucus remains blood streaked, though thankfully far less so now than this morning. So I’m already 1 day into holding treatments, and have at least 2 more days to go, if not more. Each day without these treatments means I’m less able to clear the congestion out of my lungs, and makes it more likely that I’ll lose the little ground I’ve managed to gain over the last several weeks of IV antibiotics. I also can’t exercise or do anything to elevate my heart rate, as the extra pressure on my weakened blood vessels could trigger a bleed, so any efforts to regain my strength and get back to normal life have also been put on hold.

Honestly, I am extremely frustrated right now. I have now been on IV antibiotics for 7 weeks straight, and will probably be going into week 8. I have a follow up appointment tomorrow, but we can’t even do pulmonary function testing because the effort involved could provoke a bleed. I’m pretty sure they’re going to keep me on antibiotics for at least another week while we get the bleeding under control, so that will be 2 full months of treatment. It was already upsetting that with all this treatment I’ve made such limited progress. To now be forced to stop the treatments and exercises that could help me move forward and watch at least some of that progress be unraveled is just infuriating. On the other hand, I’m also terrified of having another massive bleed like I did in February and July, and I REALLY don’t want to go back in the hospital. I’m caught between a rock and a hard place with no way to win here.

I’m tired. Hopefully things will get better soon.

In it for the long haul

Well, that didn’t exactly go as I had hoped.

At the end of October my lung function was at 57%. Just 2 weeks later, despite IV antibiotics, it had unexpectedly plummeted to 45%. After three weeks in the hospital and an additional week of home IV antibiotics, my lung function now is up to… 48%.

I knew I was nowhere near my baseline of 60%, but I thought I had at least made it back into the 50s. It was definitely disappointing to see so little progress after so much treatment. I’m certainly doing much better now than I was 6 weeks ago, but no matter what we try I just can’t seem to get very far. My lack of progress doesn’t make sense, because various tests have shown that my infections SHOULD be susceptible to the 4 IV antibiotics we’ve tried so far. But for some reason, during each of the last 2 rounds I only made a little progress before stalling. We’re going to try 1 more IV antibiotic and see if that finally makes a difference. Unfortunately, that antibiotic is Tobramycin, which caused tinnitus (ringing in the ears) back in January that never fully faded. Hopefully a brief course won’t have auditory side effects, but I will be monitoring things carefully, and we will stop at the first sign of any problems.

If I still don’t have any progress after a week of Tobra, we’re going to take a break from IV antibiotics and give my body some time to heal on its own. We’re also going to do some testing to see if it’s possible that my terrible reflux is contributing to the problem, and if maybe some of this is being caused by aspirating things into my lungs. Unfortunately, the steroid which is helping control the inflammation can also exacerbate reflux, so it might actually be making things worse. I’m in the process of starting a monthly injection used for severe asthma in the hopes that it will enable me to get off of or at least lower the steroid.

On a positive note, I do have a terrific hashgacha pratis (divine providence) story! While hospitalized I met one of my neighbors as we both walked up and down the halls getting our exercise. He doesn’t have CF, but he did have a lung transplant back in March. It turns out that he had multiple oxygen concentrators that he no longer needed, and he and his wife had been looking for a person or agency to donate them to in order to pay it forward. This week they dropped one off at the outpatient clinic, and I am now the proud owner of my very own portable oxygen concentrator! This is GREAT, as my oxygen continues to drop with exertion, but not low enough to qualify for supplemental oxygen to be covered by insurance. These machines cost thousands of dollars and I never would have gotten one on my own. Having supplemental oxygen available will make it easier for me to be active and get back on track with exercise so I can build my strength back up. So, I HAPPENED to be next door to this gentleman, who HAPPENED to have a spare oxygen concentrator, EXACTLY when I could benefit from in-home supplemental oxygen for the first time in my life but had no way to get it. Thank you Hashem!!

This has definitely been a long haul. It’s still unclear how much longer of a haul I can expect, or what the eventual outcome will be. Which is, honestly, frightening, frustrating, and discouraging. But I am still hopeful that things can get better than they are now, whether through treatment or simply with time. And even if they don’t, I am also confident that I will learn to adjust to my new normal and figure out how to live life within it, just like I have in the past. One way or another, I will roll with the punches and come out on top, just like I always do.

Chronic illness vs Demonic possession

https://twitter.com/AaronLinguini/status/1004116559571312640

Holding steady

Well it was definitely a FRA-lichen Chanukah (thank you Shira Rubin for the wonderful wordplay)!

It is sooo good to be home! I’m still not getting excessive amounts of sleep due to coughing and needing to run an IV every 8 hours, but I am far more rested than I was in the hospital. And of course the food situation is greatly improved! Week #2 of the Fancy Restricted Antibiotic, however, hasn’t been quite as dramatic as I would’ve liked, and medically I’m basically at the same place as I was when they discharged me. I’m still dealing with a fair amount of congestion and tightness. My oxygen levels mostly hold steady when I’m sitting still, but slide with the slightest exertion. Unfortunately for me, they only slide to juuuust over the cutoff point for supplemental oxygen. Which means it’s difficult for me to manage basic daily living tasks, but I also don’t qualify for the in-home supplemental oxygen that would make things easier. It’s a bit of a catch-22: I know I’m deconditioned and need to exercise, but I don’t have the supplemental oxygen that would make exercise easier. I do have a possible lead on that issue though, and it may be resolved within the next couple days… Stay tuned for further developments!

Another catch-22 is that for the last week I’ve been having sporadic episodes of coughing up small amounts of blood. The usual response to that is to hold some of my more irritating treatments to allow the wound to heal – but those treatments are also clearing the congestion out of my chest. Clearing congestion helps reduce infection, which helps reduce the risk of bleeding. So we’re walking a delicate balance between not provoking a bigger bleed – because G-d knows I don’t need any more drama in my life! – and not undoing the progress we’ve made in clearing things out. Oh, and all my bleeds in the last week have followed more significant exertion, since an elevated heart rate puts more pressure on the blood vessels and makes it more likely that any weak spots could give way. Apparently I need to just be very chill for the next however long until things finish healing… which doesn’t exactly help with the whole trying to exercise and not become even more deconditioned thing.

Of course I can’t just be boring and straightforward about things, everything has to be complicated. I’m so high maintenance.

My follow-up appointment is on Wednesday, and I fully expect at least another week of treatment, possibly with yet another antibiotic. My lungs are being so very stubborn this time around (which I guess shouldn’t be a surprise, they are MY lungs after all)! I’m super curious to see what my pulmonary function testing looks like. I know I’ve improved from that dismal 45% a month ago, but I also know I’m not back to my usual 60%. The question is how much progress have I managed, and how much more might I be able to accomplish.

So, not exactly the glowing update I would have liked to share, but also not terrible. Holding steady is definitely better than going down! And being home is definitely, DEFINITELY better than being in the hospital!!

Freedom!

A full 3 weeks later, I am FINALLY home!!! Since I spent every last day of Chanukah in the hospital last year, I just now lit my menorah for the first time in 2 years. I don’t think I’ve ever said a shehecheyanu with that much kavanna! I am so grateful to finally be home and to have the chance to celebrate even part of Chanukah this year!

Almost there!

B”H I think I have FINALLY turned the corner!

The last couple days I’ve been noticeably less dependent on supplemental oxygen. I’ve mostly been off it while at rest, and haven’t needed as much while walking around. Overall I’m breathing and moving better and have more energy. It seems that the Fancy Restricted Antibiotic is doing the trick!

Today my doctor gave me the best Chanukah present ever by finally talking about DISCHARGE! I still need more treatment, but thankfully I’ve gotten to the point where I don’t need to be in the hospital for it. The plan is to get me back on home IV antibiotics and fluids so I can finish up the Fancy Restricted Antibiotic in the comfort of my own home. I’ll also still need to make sure to do LOTS of extra nebulizers and chest PT to keep working on clearing out the remaining chest congestion. But it’s so much easier to do all that at home instead of in a hospital bed!

The question now is how I end up feeling tomorrow and how long it takes to set up all the home care services. If all goes well, I should hopefully be going home within the next couple days!

I am SO grateful that I will be able to have at least part of Chanukah at home and finally get to light my menorah! Turns out the Fancy Restricted Antibiotic really was my Chanukah miracle!

Chanukah surprise!

My team from the outpatient clinic brought me Chanukah presents! They felt bad that I'm stuck in the hospital for Chanukah for the second year in a row. It was so super sweet and totally made my day!

Chanukah oh Chanukah

Chanukah in the hospital 2.0! Katherine went on a scavenger hunt and found the decorations I saved from last year so she and Rivka Sara could deck out my hospital room. I think my first night of Chanukah crew did a great job! I've already gotten comments on how festive my room is and I'm anticipating plenty more to come. Then later on, Rivka Sara and Eli video chatted me so I could say amen to their bracha and be part of a real menorah lighting. So all in all, I'd say my first night went pretty well considering the circumstances! Chag sameach!!

Lekavod Shabbos

Most Sabbath-observant Jews do something special each week lekavod Shabbos, to give honor to Shabbos. Dressing in nicer clothing, having fancier food, setting a beautiful table… anything to show that Shabbos is special and different from the rest of the week. I’m pretty limited here in the hospital, but I was feeling well enough this week that I wanted to do something more than just plugging in my little electric “candle” and eating dinner. So about an hour before candle lighting I started puttering around my hospital room, throwing out trash and organizing my belongings. I didn’t have the energy to deal with showering and getting dressed up, but I cleaned up with a washcloth and changed into a fresh pair of pajamas.

It may not seem like much, but right now that was a decent amount of exertion for me. As I started panting, I found myself murmuring between breaths “lekavod Shabbos… lekavod Shabbos…” This effort is for Shabbos. This oxygen is for Shabbos. I’m trying, Hashem. I may not be able to do much right now, and I don’t know why You’re making this so hard, but I’m still here and I’m still doing what I can.

Sometimes life limits us and it feels like we can’t do enough. But really, it doesn’t necessarily matter how big or beautiful the outcome is. What matters most is that we keep making the effort.

It takes a village

I have to say, I love my community! Shout out to the Adlers, Bienenfelds, Junis, and Goldmans for making sure I had plenty of delicious home cooked food for Shabbos, and to the Becks for helping bring some of it to Katherine so she didn't have to make too many trips! Now that I'm able to eat again, having real food available DEFINITELY enhanced my Shabbos. It was such a communal effort to ensure I was taken care of, and I feel very loved!

Slow going

If I had to pick just one word to describe this hospitalization, it would probably be “slow.”
I’ve definitely improved from when I got here. My airways are more open and I’m more awake, and I’m using less supplemental oxygen. But any progress has been incremental and very, very slow. At this point I’ve basically been stalled in the same place for nearly a week now. My airways are better, but still tight. I’m still congested. I’m still dependent on supplemental oxygen both at rest and with exertion. I’m also still on a high dose of steroids. I got my nurse to pull up some of my test results today, and not only has my white blood cell count remained at the same elevated level (which means I’m still battling infection), but today’s chest x-ray looked about the same as the one we took when I got here. I just don’t seem to be gaining ground.
Today I got to have a special consult with the Infectious Disease team, which I thought sounded wonderfully dramatic. It was particularly dramatic when they stood outside my door, still in the hallway, and loudly announced “We’re here from INFECTIOUS DISEASE.” So I’m pretty sure the whole unit now thinks I have the plague or something. Making friends and going places!
The purpose of the consult was to determine whether or not I could get approval for a “restricted” antibiotic. Due to the ever-increasing risk of treatment-resistant bacteria, the hospital holds a few antibiotics in reserve to only be used if nothing else works. By using these antibiotics sparingly it is hoped that they will remain effective for longer. Since I’ve been less than responsive to treatment for a few years now, with this exacerbation being particularly bad, I got the green light to get what I am officially calling Fancy Restricted Antibiotics. I got the first dose tonight, and they’re giving me up to a week to see results. If it helps, I’ll get a full 2 week course. If it doesn’t, they’ll (I imagine) whisk it back to a secret vault somewhere and lock it up tight until they can find some bacteria who actually appreciate it, and will put me back on regular antibiotics.
The big question that no one can answer is how much, if any, permanent lung damage I’ve taken this time around. It’s possible that this is my new baseline and I can’t get any better. It’s also possible that I *will* get better and am just doing so very, very slowly. Unfortunately there’s no way to predict the outcome and we just have to wait and see, possibly over the course of weeks or months. I’m trying not to be an impatient patient here, but it’s not easy.
On the plus side, now that I’m more awake, I’m more able to handle visitors. Please plan it with me though so I don’t have too many people here at once – I’m ready for a few visitors, not a party. Also, if you have ANY cold/flu/respiratory symptoms whatsoever, or have been around people who do, PLEASE keep those germs far, far away from me. If you’ve been exposed to a respiratory infection, it’s entirely possible for you to be contagious before you even start showing symptoms. I don’t even want to imagine how miserable I’d be if I caught a virus on top of the current mess.
Here’s hoping the Fancy Restricted Antibiotic ends up being my Chanukah miracle!

Pole People!

Finally mustered up the energy to make some Pole People over the weekend! Several nurses told me that they had a blast with the ones I left at the nurse's station the last time I was on this unit. Apparently the nurses kept re-positioning and moving them around for months before they finally fell apart. It's nice to know they continued bringing people joy for so long!

Progress at last

Thank G-d I am FINALLY seeing some progress!

Yesterday the doctor said my lungs actually sounded a little worse, which was disheartening. The main problem was “tightness,” inflammation narrowing the airways. I have never been this tight for this long before, particularly while on 40mg of Prednisone. We decided to try upping the Prednisone to 60mg to try to get things under control. I’ve never been on that much Prednisone, but I was glad for anything that might help. I also convinced them to only wake me for a nebulizer once overnight instead of twice, and to cancel checking my vital signs overnight,  so that I could get a little bit more sleep.

Apparently a little sleep and 60mg of Prednisone were exactly what I needed, because I’m feeling significantly better today! I’m actually feeling like a human being for the first time in forever, and the doctor said my airways sound more open. I was also able to bring the supplemental oxygen down to 1 liter today, so I’m ALMOST off it. I’m really appreciating finally feeling awake and alert.

There’s still a lot of congestion, but hopefully I’ll be able to clear it more effectively now that my airways are opening up. I am finally seeing a glimmer of light at the end of this tunnel!

Struggling

So things have been less than stellar around here…

Even with supplemental oxygen I was having trouble breathing. Things finally stabilized once we bumped me up to 4 liters of supplemental oxygen, but even with that my oxygen saturation was still a bit low. I was also REALLY struggling with “tightness,” which is how I describe the feeling in my chest when airways are inflamed and irritated. The tightness was so bad that it prevented me from taking deep breaths and clearing out the congestion, instead leaving me with a dry hacking cough. I was also struggling with significant stomach issues, and all the coughing didn’t exactly help with nausea. All in all I was not living my best life.

After a few days with no progress, the doctors decided to try adding another antibiotic called Amikacin. Amikacin is in the same family as Tobramycin, and also has a risk of hearing loss, but less of a risk than Tobramycin. They also decided to start waking me for nebulizers every 4 hours to prevent me from losing ground overnight. So for the last few days I’ve been even more sleep deprived than usual in addition to all the stomach and respiratory symptoms. I’ve pretty much been sleeping most of the day and feeling pretty gross during my few waking hours.

Yesterday we finally saw a small amount of progress. Various medications finally kicked in and started getting the stomach issues under control. I was also able to lower the supplemental oxygen for the first time, and maintained decent oxygen saturation even with only 2 liters of supplemental oxygen. Unfortunately, my chest is still really tight and I’m still not moving air well. They’re going to try increasing the dose of Amikacin, but if there isn’t real improvement within the next few days we’ll have to move on to Tobramycin instead.

This has been my worst CF exacerbation in a very long time. Hopefully things will start to turn around soon.

Finally!

Nearly 30 hours later I am FINALLY in a room!

Still waiting

Unfortunately I'm still in the ER. HUP is packed with cold and flu craziness, so there aren't many rooms available. To make it even worse, I need a private room to prevent cross infection, and those are in seriously short supply. No clue when they'll finally get me upstairs.

I'm stiff and sore from "sleeping" on an ER stretcher as well as from frequent coughing fits. A chest x-ray showed pneumonia on the left side and heavy congestion on the right side, so we have a lot of work to do. Right now my heart rate skyrockets and my oxygen drops with every coughing fit or any exertion, so that's super fun. I've also been dealing with nausea and stomach pain, because G-d forbid only one system fail at a time. It's been an exhausting 24 hours.

Hopefully they'll get me upstairs soon so I can settle into a room and a solid treatment routine.

Waiting room shenanigans

2 hours in the HUP ER got Katherine like:

3 and a half hours in...

One step forward, three steps back

Well, I *was* improving…

I finally started feeling like a human being again over the weekend. My cough gradually eased, I was finally able to get some sleep, and the fevers were lower and less frequent. I thought I was finally on the verge of kicking whatever virus I had, and that the antibiotics could start working on the underlying CF exacerbation.

Aaaand then everything fell apart.

On Monday the fever was back with a vengeance. It spiked repeatedly all day, and went higher than it had during the previous weeks. I was also increasingly short of breath. Tuesday was downright awful. Not only was I feverish all day, my oxygen levels were barely hanging on and dropped with the slightest activity. I spent the day in a panting exhausted haze until things finally eased off a bit around 7pm.

Given how terrible yesterday went, I was pretty sure I’d be admitted to the hospital at my doctor’s appointment today. What I wasn’t expecting was the worst pulmonary function test results of my entire life. Lately my FEV1 has been topping out at 60%, and at my last appointment it was 57%. Today, it was 45%. Which was dramatically bad, but at least made me feel validated in how utterly awful I’ve been feeling.

My doctor thinks that I have a virus on top of a severe CF exacerbation. We’re going to try a different IV antibiotic since the current one apparently didn’t do much. Unfortunately, the infections in my lungs are resistant to most antibiotics, and one antibiotic which has been very effective in the past ended up causing tinnitus (ringing in the ears) and can cause hearing loss. Thankfully, 11 months later the tinnitus is mostly gone and not intrusive, but we’re still extremely hesitant to risk my hearing by using Tobramycin again. Hopefully the new antibiotic will be effective and get me back on track, but if it isn’t we may have no choice but to risk a round of Tobramycin. Let’s hope it doesn’t come to that.

Unfortunately, HUP is packed, and the only way to admit me is through the ER. 3 hours and counting! On the plus side, they put me in a private waiting room to protect me from exposure to additional infection. Hooray for medical fragility!

Worn out

I haven’t posted for a while because I wasn’t exactly sure what to say. After the last round of IVs I was pretty good for about a month. In early September, however, I started having trouble breathing again. We thought it might be due to seasonal allergies and played around with my prednisone dosage, which helped a little, but I was still fatigued and short of breath. It wasn’t TOO bad though, and my pulmonary function numbers didn’t drop much, so we kept bringing me in for appointments every 2-3 weeks and trying different things. New inhaler – no change. A week of IV hydration – no change. I was getting by, but the whole thing was pretty exhausting and demoralizing.

Last week my doctor noted continued congestion in my lower lobes, which is unusual for me. Since nothing else had worked and I still seemed to be in a low-level CF exacerbation, she suggested starting home IV antibiotics, which actually surprised me. It’s gotten difficult for me to figure out when I just have to put up with feeling kinda gross on a day-to-day basis, and when we should try more intensive treatment. I know when I’m REALLY sick, but deciphering  the low-level dysfunction week after week is trickier. Part of me was very frustrated to go on IVs again, particularly after not getting much relief from the last round, while another part was relieved that maybe I don’t have to live like this and can hopefully feel better.

Turns out I went to the doctor at exactly the right time, because that very night things took a turn for the worse. I started running a low-grade fever and developed a horrible hacking cough that kept me up all night. Cough drops, cough syrup, tea with honey, soup – nothing helped. After 4 days of this, the hacking cough transitioned into miserable chest congestion. At this point, I haven’t gotten a decent night’s sleep in a week, my throat is ragged, and I’ve had an off-and-on low-grade fever every day. It’s been pretty pathetic around here to be honest. I’m shambling around like a zombie, moaning and groaning, mainly communicating by grunting with different inflections. I’ve been too much of a mess to even write a health update about it until now. Send thoughts and prayers to poor Katherine, who has a front row seat to all the drama and misery. I keep telling her to just take me out back and shoot me, but for some reason she refuses. Something about, “You’re not Old Yeller,” bla bla bla. Whatever.

Thankfully, things are slowly improving, and I have hope that I might even manage to be a semi-functional human being again someday. Hopefully sooner than later.

Drama free and moving on

You know how some places have those signs, “This workplace has been incident free for x days?” Katherine and I decided that I should have one for bleeding. Current count: 17 days!

Since I’ve managed to stop bleeding and my lungs finally sound clearer, I’m finishing up one last day of IV antibiotics and fluids and then calling it quits for this round. After being on IVs for a full month, I am very much looking forward to freedom and a full night’s sleep! Next task: Getting back to pulmonary rehab and rebuilding my stamina. I’ve been trying to keep somewhat active since the bleeding settled, so hopefully I haven’t deconditioned too much. I’m also hopeful that maybe I’ll manage another few months of relatively good health like I did after the last round of IV antibiotics. Fingers crossed!

One less exciting bit of news is that I’m starting to show side effects from long-term steroid use. A scan showed that my bones are thinning, not quite to the point of osteoporosis, but definitely on the borderline. It’s not a huge deal, but it’s something to be aware of. That should become less of an issue as we slowly taper the Prednisone down, and hopefully I’ll be able to get down to a maintenance dose that’s low enough to have minimal long-term impact. In the meantime, I’ll be starting medication to help rebuild bone density and hopefully prevent osteoporosis.

On the other hand, I also got some unexpectedly good news! Apparently by the end of May I reached the out-of-pocket maximum on my medical benefit, which means medical is now covered at 100% and I no longer have any medical copays (though I still have prescription copays, as the pharmacy benefit has no out of pocket maximum). I was surprised, as I have spent less than half of the $6,700 I was anticipating. It turns out that some of my more expensive specialty medications are covered under the medical benefit instead of the pharmacy benefit, so those copays made a significant dent in my out-of-pocket maximum. Even better, I have a grant that covered those copays, so I didn’t even have to pay them myself! Having my out-of-pocket maximum essentially halved was a HUGE relief and will make the rest of the year MUCH easier. Additionally, I got two other prescription copay assistance programs set up, and my pharmacy expenses finally hit the catastrophic coverage phase, which means that my prescription copays have dropped significantly. Now that I have everything set up, next year should be much smoother financially!

It’s been a difficult summer, but B”H things are finally looking up. Looking forward to getting back on track and hopefully squeezing in a few good months before the next round!

Dance therapy

Who needs pulmonary rehab when you have Dance Dance Revolution? I had to give up after the second round though when my oxygen started dropping. It's a work in progress! Also, we've officially found a game where Katherine wipes the floor with me lol!

Multitasking: CF Edition

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

Endings, Beginnings, and Doctor Who

A fitting way to spend our last night together as roommates: catching me up on the last episode of Doctor Who before the new season starts in the fall. By the time Martelle comes back after the weekend, I should be finished moving upstairs. Martelle and I agreed when we moved in that I would introduce her to Buffy the Vampire Slayer, and she would introduce me to Doctor Who. She finished Buffy ages ago, so it seems particularly appropriate for us to finish catching me up on the Doctor tonight.

It's been an awesome 3+ years, filled with an abundance of hashgacha, laughter, geekery, and good times. I'm so glad that we're simultaneously moving on for the best of reasons, AND that we'll still be living in the same building so there's no real goodbye! Looking forward to continued adventures together!

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.

This patient needs ice cream, STAT!

Funny hospital story: So at HUP, you can’t just order kosher meals. You have to be entered into the system as being on a kosher diet. This isn’t difficult, and my care team put in the order as soon as I asked. HOWEVER, food services then treats this like any other medical diet, and will ONLY send you items on their very specific Kosher Diet list. I’m 90% sure their ice cream cups are kosher, but I couldn’t find out for sure, because food services absolutely refused to send me one since it wasn’t on The List. The dietician tried to intervene on my behalf. My nurse spent ages explaining to them why this was ridiculous. No dice. Finally, however, the beleaguered food services staff said that she could send up ice cream to stock the fridge in the pantry for the whole unit, and then my nurse could “choose whether or not to administer the ice cream to the patient.” We all laughed uproariously at this, and discussed the various ways in which my medically approved ice cream could be administered.

Oh, and after all that, do you think they ever stocked the unit fridge with ice cream? NOPE!

I’m still on IV antibiotics and hydration for at least another week, but I am SO GLAD to be home, in my very comfy bed, with access to a kitchen full of whatever food I want -- INCLUDING ICE CREAM!

Homeward bound!

I'm going home!

Silver linings

Unanticipated perk of being in the hospital: Fantastic views of the Philly skyline!

Making progress

B”H I’m recovering much faster this time than I did in February. The congestion already sounded better just one day later, and I have way more energy this time around.  We think the fact that I was already on IV antibiotics for 4 days beforehand really helped. We added chest PT back in yesterday afternoon and I’ve tolerated it well, so we’re adding in a nebulizer med today. If that goes well, we’ll add in the last nebulizer med tomorrow, and if THAT goes well I could be discharged on Sunday. Fingers crossed!!

I did get a great deal of twisted pleasure in showing off my Super Dramatic Cup o’ Blood (sometimes referred to as my Cup o’ Drama) to various medical staff for the first couple days. Hearing about 80 mL of blood is one thing, SEEING it is another, and it’s so much more fun to answer the question “So what brought you here?” with eye-opening props. I also learned that I get an even better reaction when I tell them the time frame, as in “That all came up within 5-10 minutes,” for maximum shock value. Hey, I’m bored, gotta get my kicks where I can!

Before this year I only ever had severe bleeds twice in my life, with the most recent one being a few years ago. Given that, I didn’t expect to repeat February’s drama any time soon. But apparently horking up mass quantities of blood is my fun and exciting new hobby (why yes, I DO need to find better ways to occupy my time). It’s particularly exciting in that it’s COMPLETELY unpredictable and can happen at any time without warning. Unfortunately, the only thing you can really do to prevent bleeding in the lungs is try to prevent infection. Obviously that’s already one of our primary goals and is the basis for most of my daily medical routine, but we’re probably also going to be a little more attentive to smaller bleeds from here on out. While previously we could take the time to monitor small bleeds to see if they became more significant or were accompanied by additional symptoms, now we’re more likely to throw me right onto IV antibiotics as soon as I start showing any pattern of bleeding in order to reduce the risk of having another major bleed. I’m not thrilled about that, but I’ll take a couple weeks of home infusion over all this drama any time!

In other news, what’s a hospitalization without… Pole People! I hope you enjoy the latest crew!

Moving up in the world!

They have a bed for me! I'm SO relieved that I don't have to spend the night in the ER!!

One step forward, two steps back

Just when things were heading in the right direction…

On Monday I finally started getting some of my energy back. Prior to that I had been so utterly wiped out that I often napped twice a day, and even with that I still felt completely drained. But on Monday and Tuesday I actually woke up a bit and began to feel like a semi-functional human being again. I was hopeful that things were turning the corner and that I was pulling out of the CF exacerbation.

And then the other shoe dropped.

All month I’ve been having mild issues with coughing up blood. I had a couple days of blood streaked mucus, then a small bleed of 5 mL… a couple more days of streaking, then another small bleed of 10 mL. I was a little concerned that maybe I was ramping up to something bigger, but I was NOT expecting to be hit with an early morning massive bleed out of nowhere. It was close to what happened back in February, and I almost filled a specimen cup with 80 mL of my own blood within the span of 5-10 minutes. Fortunately, though I knew it was bad, I could feel that this one was a little more under control. I was pretty sure that it would stop fairly quickly – and I was right. But I also knew that it was bad enough that it was time for another trip to the ER. So Katherine got to wake up to a really fun 5 am phone call and take me to HUP. Don’t I take her on the BEST dates??

Based on February’s drama, I knew they were going to admit me, so this time I came prepared with a suitcase and supplies. Fortunately, a CT scan did not show any active bleeding, though it did show a small amount of pneumonia. Presumably the infection wore away at a blood vessel in my lungs, but B”H it seems to have sealed itself right up, so hopefully I won’t have any further drama. Just like last time, we’re yanking a bunch of my daily treatments that could irritate my airways and cause further bleeding, and will monitor how I do as we slowly add them back in over the next few days. We’re also continuing the IV antibiotics that I had already started to address the pneumonia as well as reduce the risk of additional infection.

Unfortunately, HUP is pretty busy, and they aren’t sure they’ll be able to get me into a bed upstairs until tomorrow. Which means spending the night in an ER stretcher. At least I was lucky enough to get a cubicle; they’re so busy today that some people are on stretchers in the hallway. I will be very glad to finally get upstairs and settle in, hopefully soon!

Breathing is overrated

Of course I can’t be a STANDARD CF patient, that would be BORING.

The prednisone helped somewhat, but not entirely. I stopped having crazy coughing fits, but still struggled with upper respiratory irritation and shortness of breath. We tried adding in an oral antibiotic and IV hydration, but it didn’t seem to help, and I actually ended up feeling even more fatigued and out of it as time went on. On Friday my doctor brought me in for an appointment, but even though I was struggling with so many symptoms, my pulmonary function numbers were the same as 2 months ago when I felt great! Despite this, my doctor could hear that my chest was unusually congested and see that I was visibly exhausted. No matter what the numbers said, it was obvious that something was brewing in my chest and that it was time for IV antibiotics.

Fortunately, I’m not so sick as to need to be hospitalized, so I’ve been able to get everything started in the comfort of my own home. Sooo much nicer to skip the hospital piece! I just need to remember that even though I’m home, I’m still in the midst of a CF exacerbation, which means I need to ramp up my nebulizer and chest PT routine in addition to the IV hydration and antibiotics.

I pretty much expected to be on IVs at some point this summer, since in recent years I haven’t managed much more than 4 months between CF exacerbations. I’m not even that upset about it, because I actually had a stretch of unusually good health during the last few months, which I really appreciated! The only catch is that I’m currently in the midst of moving, which is a little difficult when you’re exhausted, short of breath, and on IVs. But it’s not the first time I’ve managed a major life change while in the midst of a CF exacerbation, and I’m sure it won’t be the last. At least this is a GOOD change! Fortunately for me, Katherine’s apartment is right upstairs, so it’s pretty much my easiest move ever. We’re also trying to move things slowly over time to make it less strenuous for me.

On the plus side, doing IVs now means that I should hopefully be at my best just in time for Martelle’s wedding! She gave me strict orders that I am not to be sick, so it’s a good thing I’m getting this out of the way rather than risk her wrath. A few weeks of IVs now is a small price to pay to be able to celebrate properly later!