First Exacerbation

[LKBamberg]

Hello. I had my first CF exacerbation recently. In the hospital for about 8 days. They said I was super healthy for my relatively low FEV of 40% (after drop). I do p90x, and workout a lot.

Anyway, I was hospitalized and feeling a bit sick. Antibiotcis and tons of treatments helped me cough up a lot. My function started to slowly go back up. I've been out of the hospital for a week now.

I just finished doing my home IVs.

Here's the thing. I started feeling a bit worse since I've been home. My sleep schedule has been super messed up trying to regulate these IVs. I'm not coughing stuff up (antibiotics) and I can take in full deep breaths easily.

Something just doesn't *feel* right with my lungs. I went exercising, ran half a mile (i was running up to a mile IN the hospital, and had once or twice since I got out) and then it just kinda felt like my lungs were....shutting down. That's the only way to describe it. They seemed overworked. Yet i could still breathe, as long as i breathed slowly.

I went to the ER. Oxygen sat 97%, X-ray looked normal. Chest sounded find when they listened to my full deep breaths; no clogging.

It's been getting better every day, but I still don't *feel* well. I actually feel a little bit worse. Is this healing of inflammation? I feel lethargic and anxious, and just do what i can to distract myself. Too much exertion seems to take its toll on me.

I don't understand this because again, I'm in super good shape, and my FEV isn't so low that it should explain this. They said I responded very well to all the treatment when they sent me home. I'm wondering if this is jsut stress/anxiety, and a messed up sleep schedule.


Is this normal for exacerbations? They told me not to strain myself, that it takes time for my lungs to heal, but this is such a weird phenomenon for me. Talking to a pulmonologist at the ER, he said my symptoms didn't describe anything out of the ordinary. I've had some shortness of breath running around, but only sometimes, and it's fine when I just sit and rest again.


Any input?

 

[keefer11]

It might be the lack of sleep. I feel like crap often when I'm doing IV's and then once I'm off of them and sleeping normally(without interrupted sleep) I feel MUCH better. Hopefully that is the same for you! Are you doing Meropenem? That IV kills me even though it is every 8 hours, but you have to keep an eye on it so it adds an extra layer of anxiety for me. Try and rest as much as you can, but keep up the exercising!

 

[jricci]

I'm sorry you're having such a difficult time. My FEV1 has been running about 48% and I do have shortness of breath with some activities, esp. walking up a lot of steps, or walking up any incline. There are some days that I'm out of breath just walking my dog. It seems to vary greatly for me from day to day. I've tried everything to figure out why some days are so much worse than others; but haven't found the connection. I can relate to how frustrating it is to know that something feels "different" but not figuring out why. If you're symptoms don't improve, I would definitely talk to your doctor. When I first started with the increased inflammation, I was tested for allergies (skin testing and blood work for IgE levels) and a sputum culture for aspergillus and mycobacterium. I also had a chest CT scan to see if there was something that wasn't showing up on X-rays. All of these tests were negative for me. Another thing that can increase lung inflammation is GI reflux. Even if you don't feel like you have reflux, there is such a thing called "silent reflux" where you don't have symptoms of reflux. I'm still in the process of ruling this out. I have a GI appointment next month. We did discover that I was having an adverse reaction to one of the medicines that was added for the inflammation (Q-Var inhaler). So don't assume that a med that was added is helping, it may be actually making you worse. One drug that has helped me with my shortness of breath is Spireva. I don't think it has had a lot of success with CF patients, but for some reason it has definitely made a difference for me. I started doing pulmonary rehab a couple of months ago and I do feel that this has made a difference as well.
I hope you feel better and find out some answers soon.

 

[LKBamberg]

I was on 3 IVs. I had to sleep in shifts with my gf. It was Vanco (8 hours), Tobra (1/day), and Aztreonam (cayston IV) also every 8 hours. So it was fairly hellacious. They wouldn't send me a pump so I demanded to have all 3 with intermates. Near the end my PICC was getting clogged so I had to flush it every so often.

So lots of broken sleep. Lots of anxiety. Symptoms are all over the place but very rarely are they simply "short of breath" although that has happened as well.

Seems to go back and forth really. I have a follow up appt, guess I'll find out more with PFTs.