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