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Started my Orkambi today! The only things I've noticed today are that my chest is just a teeny bit tight, coughing a lot more and bringing stuff up easier, sinuses are draining a lot as post-nasal drip, and I've been sweating a lot. But overall, I would say the first day went good :)

Autumn, Same issue with me. Had to finally stop tobra due to bronchospasms as well. Colistin used to do the same thing to me years ago, but I just tried it again this month and I seem to be tolerating it ok. I also feel a bit freaked out about only having Cayston as my option since I know I...

Good to know about the Ceftazidime. Just wanted to know if there was anything else out there for pseudomonas. Thanks!

I hated dealing with them in the past and refused to use them for years. I just started using them again and they seem better now. My only complaint is that they get an Rx and don't call you to set up shipment. I've had to call them to send my meds each time I've had one sent there this past...

Hi there, Just wondering if there's anyone out there on any inhaled antibiotics other than Cayston, tobramycin/Tobi, or Colistin? I've seen some things online that there may be ceftazidime or amikacin available in the inhaled form? Just wondering if that's true and/or if anyone has ever been on...

My shipment is coming Weds! I'll post updates once I start. Anyone else that started recently have any more experiences to share?

EmilysMomma- Let us know how your first day and week goes! I just got my doc to write the Rx yesterday, so hoping to obtain the drug soon. Also not looking forward to the first week, so I'll be interested to hear how it goes for you.

Wow, that is fabulous news occupyjapan! I am excited to get to my clinic appointment this week to get my Rx as well. I will post my updates once I start.

Hi - I had the same experience with my PICC just a few weeks ago. My chest hurt so bad. I mentioned it to the nurse when I was inpatient, and he said it was normal to be uncomfortable. It hurt when I coughed, and sometimes I could get it to go away by moving in different positions. I wasn't...

I have the same problem with Colistin - my airways get extremely irritated and I feel worse on it than better. Same with HTS. Reactive airways issues often come with CF. I have not tried to take them again since I noticed the issues, but I'm hopeful I can try them again some day.

Gorgeous! Congrats!

Hi Sasha, I think it depends on the person. I have never required O2; however, I was just on IVs for the first time and my doctor ordered O2 if I needed it. My infection was pretty bad when I went inpatient and my sats were much lower than normal. Once my lungs felt better from the IVs, my sats...

I don't know that it's because of CF that your husband is like that, but it may factor in. Sometimes it's hard to let someone be close to you in our shoes. Especially if he is one to take care of himself, he may feel like he has to 'protect' his body and that means not letting anyone be close...

Thanks guys! I'm feeling good now - just took a bit.

Yeah I feel quite dehydrated. I have not taken probiotics, but I think I should've done that beforehand :( I was on meropenem and amikacin. Thanks

Hi all, I completed my my first course of IVs on Weds (couple days ago). I had terrible side effects from them, such as dizziness, nausea, diarrhea, fatigue, and loss of appetite. Got some Reglan to counter that and it worked great. However, I've been off the meds for a couple days now and I'm...

Hi, I previously traveled 4 hrs to a CF facility out of state, but now I go to UofM Ann Arbor. Their clinic area was just re-done and they have a good process for CF patients. I just had my first inpatient experience there and was more than pleased. They really treat their patients well and...

Hi there, I graduated with my BSN back in 2004. I remember questioning whether I was making the right decision by going into that profession, but I plugged along anyways. If there were clinicals/rotations that I felt were risky to my health or others, I would tell my preceptor. They were...

Thank you all so much. I appreciate the wonderful comments. You all made me cry! I think it's just been a tough week at home on these horrid meds. I spend most of the morning in bed fighting the nausea and fatigue. I know I will only have a few good hours this afternoon before I get sleepy...

Hi all, Woke up in the middle of the night last Thursday morning coughing up blood. Totally freaked me out. I would have to say that's one of the scariest things about having CF. So called the on-call doctor who said to wait a few hours and talk to my CF doctor since it was almost morning...