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!