Search results

Foundation Care rocks.

Hi everyone. I got a PICC in mid-November. Shortly thereafter I was diagnosed with a clot in my arm (long and skinny from inside my bicep to shoulder). I have been on Lovenox shots since. Tonight, my clot arm started to ache. When I took off my shirt, I noticed that my veins in my shoulder were...

Do not give yourself a choice. Start by only doing them at night. No matter what. Sit down and do them. Never skip. It takes about two weeks for a routine to set in. For those two weeks, do not skip. Choose a month where you will be at home, not traveling or out of the house. Once you have a...

Hey Edan. I have cultured pseudo since just after I was diagnosed at age 2. I haven't had a negative culture for it since. Regardless, my PFTs are still between 95 and 105 when well. My lowest ever was 67 percent when I was extremely ill for a few months last year. I have gotten them up 30...

Bill- I should have been more clear. They seem to be unrelated; I LOVE coughing up so much gunk (although I have no idea why I'm doing so, I'm usually clear and cough nothing up) but this Cayston cough is not productive and just awful. I don't cough anything up with it, it just makes me gag and...

Hey everyone, I started Cayston on Tuesday. I have been on it every other month since August (so this is my third on month) and had been on it for 2-4 week stints before that. I was on TOBI every other month from October 2011-August 2012. This time, Cayston is making me cough so hard I'm...

Hi, I'm no longer on IVs. I just did my nebs and vest for the first time since it subsided on Friday morning (my clinic policy is 48 hours with no vest/DNase/HTS) and started coughing up blood streaked sputum again. It's fresh stuff again. I don't know what to do; I feel sick, so I want to do...

I just coughed up about four tissues full (no clue how much) of pure blood. I was discharged after two weeks this morning. I was on Tobra and Ceftaz. I'm on Lovenox (blood thinner) for a clot. It has lessened now and is every time I cough but not nearly as much. It is still pure, no sputum. I...

I read your book a few years ago and loved it! It was autographed. :)

Hey Hannah. I'm 19 almost 20 and I was you last winter. I felt fine without nebs, even Pulmozyme. My vest literally had dust gathering. I made a Tumblr and saw that there were teenagers who were doing every treatment and were still sick. I felt awful and started trying to do my vest every day...

The day your child said "I have cystic fibrosis". When I was in 3rd grade, a mom found out I had CF and told her daughter I was going to die. The daughter came to school and told me. And my entire class. It was EXTREMELY traumatizing. I then googled it an got even more upset. So, uh...

Almost 20; between 95 and 102% is my top FEV1, usually about 91-93.

Blood when she's coughing is generally an indicator that she needs some antibiotics, possibly in IV form. It's called hemoptysis. Stop Pulmozyme for a few days to let her airways calm down and make a doctor appointment as soon as possible. If she starts coughing a lot of blood (like a half cup)...

Neither of the clinics I go to will prescribe it. "TOBI has to be specially formulated." Well, I want to switch to Cayston as soon as possible, so there. "Shorter treatment times aren't necessarily better." And I'm sure getting no sleep when you're nebbing for 3 hours A DAY on TOBI months is...

Nurses make or break hospitalizations. I'm 19 and hospitalizations are incredibly stressful on me. They always interfere with school or summer, and having nurses that obviously think you aren't sick enough or shouldn't be on a children's floor or who are too busy gossiping or who are just plain...

So, my nebs are taking FOREVER. I'm literally nebbing for an hour and a half twice a day. When I go back to school in September, that's quickly going to turn into either non-compliance or no sleep. Neither of which will end well in the sick fall season. I asked my doctor today (via phone) if he...

Dr. Roe- I'm on Replesta once a week now for the vitamin D. My doc said the joint pain might be because of the lack of vitamin D in my body or that I caught a virus, and to see how it does. Tisha- We talked about how my PFTs could be so great if was feeling so sick. It's happened with me...

I went back today and my PFTs were the highest they've been in over a year! My joints are still killing me slowly but surely, but my lungs sound super clear. He's keeping me on IVs through Sunday evening, and I'll keep an eye on my symptoms. If I'm feeling better, I'll be done Monday. If not...

Hi guys. So, I was admitted for a tuneup on the 12th, was in house until the 16th and I've been doing the IV abx at home since. I'm on Ceftaz 3 times a day and Tobra once a day. I'm also on oral Septra and just started hypertonic saline twice a day. I'm on half an hour of vest three times a day...

Xopenes is GREAT. I had terrible tachy from albuterol (both the neb and the inhaler) and it went away the moment I started Xopenex. When I was only sporadically doing the nebulizer, it made me a bit shaky, but I've started doing it twice a day and seem to have gotten used to it. I'd definitely...