Mixed signs

[FishStampede]

My girlfriend has CF, not sure what mutation. Recently, she coughed up blood for the first time (only for a short while after waking up). I took her to the emergency room, where they did an X-ray and found nothing. She went to her specialist at UT Respiratory a few weeks later and they ran a few tests. She seems to have worryingly high colony counts, and one of the lobes of her right lung has diminished breath sounds. She's also had a lot of fatigue lately, sometimes sleeping nearly all day if allowed.

However, she hasn't coughed up blood since then. Her weight is up over 5 lbs from the last time she went in, and despite that one lobe, her overall lung volume has gone up significantly. The doctor was confused by these mixed signs, put her on IV leva, and ordered more tests.

I wonder if anyone here has seen similar signs, and what tests eventually showed?

 

[Printer]

Coughing up a small amount of blood (less than a cupful) is normal with CF.

 

[Printer]

Coughing up a small amount of blood (less than a cupful) is normal with CF.

 

[TreasureGoddess]

Does your girlfriend see a CF specialist or CF team? It makes a difference as things that could be unfamiliar to a respiratory/pulmonologist that a CF team would be better to advise on "unusual" situations. No worries if not, it just may be good to schedule a visit to a nearby CF center for a workup and evaluation of the care she's receiving and what meds/treatments/etc she does. It's scary as heck the first time someone coughs up blood (for the person with CF and caregivers/family/friends too). It is common, but still scary as heck each and every time. Maybe it gets less freaky as you get used to it, but luckily we've not had a lot of experience with it. I am SO thankful that I'd read on here that it was normal or I'd probably have had a major freak out.

 

[FishStampede]

We're waiting on the results of her labs and cultures, and she's going to get a CT scan soon. We went to her CF specialist at UT Medical Center, but only talked to the nurse practitioner. We should find out more when the results are back, but she's doing much better this week after a round of IVs and me convincing her to do three treatments a day.