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!