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.