Stalled

So the good news is, my pulmonary function numbers are still very decent. The bad news is, they haven’t improved any further, and are the same as they were 2 weeks ago. The worse news is, my doctor isn’t yet confident that I can maintain this level of lung function without IV hydration, particularly during the current heat wave. So I’m doing 10 more days of IV hydration, and then he would like me to keep the PICC line (a fancy, long lasting IV) in for another month while we see how I do without hydration, so that I can easily resume hydration if necessary without needing to have another line put in.

Honestly, I was not in my happy place today. I am thoroughly tired of being chained to an IV pole 8+ waking hours a day. I am also tired of persistent discomfort in my arm from the PICC line, and of having to wrap it up with plastic and tape every time I take a shower. And I’m definitely tired of being mostly homebound, since I’m hooked to the IV much of the day, and I’m unwilling to travel too far from my homecare provider in case something goes wrong with the PICC and I need assistance. I know it could be far worse, and thank G-d my health is stable enough that I only have these relatively minor irritations stressing me out. That being said, it is turning into a long, boring, lonely summer.

On the plus side, however, there was a SPECTACULAR thunderstorm this evening, which I greatly enjoyed. I even went outside and stood on the porch to take it all in and feel some of the wildness of the wind and rain. So that was kind of Hashem to send some phenomenal extreme weather that I could safely experience and enjoy, which provided a much needed distraction and lifted my mood. Also, I took a shower, and it never ceases to amaze me how much something so simple as feeling clean can lift your spirits.

So that’s my story… Stay tuned for continued installments of Eliana’s Medical Adventures.

Progress

Just got back from the doctor, and thankfully the hydration seems to be doing the trick. After a week of IV fluids my pulmonary function tests showed significant improvement, so it looks like we won’t need to bust out the big guns (IV antibiotics) this time around. Yay! I still have room for further improvement though, so we’re keeping me on IV fluids for the next 2 weeks. Less yay, but manageable.

I spent most of the week in a barely functional haze of exhaustion and shortness of breath, but I’ve been feeling more comfortable and alert over the last few days, for which I am extremely grateful. Hopefully I’ll continue improving until I actually have the energy to be annoyed about being tied to an IV pole for most of the day. Having enough energy to get bored and be irritated with limitations is a definite sign of improvement.

That being said, I’m feeling more up for visitors, if anyone is looking for low-key adventuring. Especially if you want to push me around town in a wheelchair on a Pokemon collecting scavenger hunt! 

When life gives you doctor's appointments... catch Pokemon!

Amusing myself at the doctor's office

Oh hey, I can't breathe. Again.

The problem with having both CF and seasonal allergies, is that it can be difficult to determine which one is causing your breathing issues. Well, I’m sure I could come up with more problems than just that if I put my mind to it, but that’s the one I’m dealing with currently. I’ve been getting increasingly short of breath over the last few weeks, but I chalked it up to allergies and a possible reaction to the dosage of my allergy shots being increased. Until last week, when I started feeling REALLY gross, and my allergist was so alarmed by my symptoms that she put further allergy shots on hold – but also said that she didn’t hear any wheezing. Finally it occurred to me, a bit belatedly, “Hey, maybe I should call my pulmonologist!”

You’d think, after 37 years, I’d have this figured out. You’d be wrong.

Boy do I know how to waste a holiday weekend. I wasn’t on IVs, but I was completely exhausted, and the slightest exertion left me breathless. Of course the whole exhausted-and-short-of-breath thing meant I also wasn’t thinking terribly clearly, so I had the same stupid thought spiral countless times: “Hey, I should check out [fun holiday weekend activity]! …No, wait, I’m sick. I’m not going anywhere.” Sigh. I’ll just have to make up for it with a SUPER FABULOUS time next year. Who’s in?

After trying REALLY HARD to hydrate during the last week, and seeing limited improvement, today we finally threw in the towel and threw me onto IV fluids. I haven’t been feverish or unusually congested, so my doctor thinks that I have “plugs” blocking up my small airways, trapping air, and reducing my lung capacity. The hope is that getting me SUPER HYDRATED via IV fluids will help break up some of the garbage in my lungs and make it easier to clear out. Right now I’m scheduled to be on fluids until Friday, but I will very likely be chained to an IV pole through the weekend, if not longer. I also managed to lose a not-insignificant amount of weight, which is never good. Sometimes I feel like the only woman on the planet who’s dismayed to see the numbers on the scale go down. After a lecture about the importance of maintaining adequate caloric intake, my doctor said that between improving my nutrition and getting hydrated, he wants to see me “fat and floating” by the time I come in for a follow up next week. How’s that for a mental picture?

In a bizarre way, it’s actually kind of nice to have my decision to stop working validated. There have been times when I felt like maybe I wasn’t trying hard enough and should be doing more. The fact that I’ve been struggling to keep my health under control even without the stress of working, however, tells me that it was the right decision. Being sick sucks, but it’s definitely a relief to have taking care of my health be the only job on my plate.

So, anyone wanna keep a cranky exhausted person company for Shabbos? Doesn’t that sound so super fun??

Pulse envy

That moment when you hear that the patient next door's pulse is 66, and your immediate reaction is "WOW! Is he ok? Wait... Is that normal??"

I got this. Mostly.

That moment when you're so stupidly determined to be independent that you drive yourself to your doctor's appointment, despite being exhausted and out of breath.