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I've been right around 30% for almost a year and a half.

Thank you all for your insight and words of encouragement. I am by no means about to let one more thing bring me down, like I said in my original post I was just irritated that there always seems to be one more thing. As for the surgeries, I cannot have the acid reflux surgery before transplant...

Hello my fellow cfers. Im just going to jump right in, I'm 25 and I just finished my evaluation for transplant and found out I will be getting listed for both lung and liver. However, when I got a ct scan of my abdomen they saw some of the nodules on my liver do something called "washing out"...

I agree with nocode. I thought I would be so bored when I had to quit my jobs, but when I got to this point doing all my treatments has become my job. As for doing stuff with friends, I go out when I have the energy. Usually just to lunch or a movie or something. Sometimes they just come over to...

I get taken off my inhaled TOBI and Cayston while I'm in the hospital. I asked my NP about it once and she said they are fighting the same thing, so when you're on iv TOBI it would kinda be like doubling up.

My mom comes with me to every transplant dr appointment/meeting, I think it's important because she's going to be my primary caregiver afterwards so having her know as much as possible I think is a great thing. My dad comes to the classes and meetings but not necessarily all the procedures. My...

I hate to say it, but I'm relieved this has happened to other people. It makes me feel better to hear its not totally uncommon. As for fixing it, when I was in the icu they said if it continued to happen they would do the whole embolizing thing. And I was put on 15mg of vitamin K the reminder...

I've been on pulmozyme as long as I can remember. They did have me on the 7% hypertonic saline when i first went in, at home I only do 3%. But after I had my little episode they stopped both for a couple days. Has it continued to happen to you even though you've stopped the pulmozyme? What...

Hi everyone. I just got out of the hospital a couple days ago but while I was in, a few days after I had been admitted, I coughed up blood. And it wasn't just a little, they said it was probably about 200cc which i believe is almost a cup of just blood, no sputum. I was put into the icu for the...

I love hearing about people doing so well after surgery! It gives me hope for when I have my own. Hope you all stay healthy and happy!

I was actually really surprised at how fast it happened to me, I had never really heard of anyone all of a sudden just getting way worse so I think it's a fair question to ask. In march last year my baseline was in the mid 50's and I was not on oxygen. In April I had a really bad exacerbation...

I was prescribed trazadone for sleep by my cf clinic. My sleeplessness is usually due to stress and my mind going a million miles an hour.

Update: I was able to get through the 24 hours. Being inpatient was what made it so much easier. I got Adavan to help keep me relaxed the whole time it was in, and it also helped keep me close to sleeping the majority of the time as well. I was also given benzocaine (a numbing spray) to numb my...

Hi everyone. As of right now I only need one more test before my lung and liver team present my case to the transplant committee. It's the ph study, you know, the one where they shove a tube up your nose and down your throat to measure your acid reflux. Anyway, I tried it outpatient last week...

Hey, I'm in eval for transplant as well and have been doing a pulmonary rehab program to keep my strength up. I find it does take a lot out of me too. I do the treadmill and resistance bands, taking breaks from the bands every other day. I've found that even just that hour three or four times a...

Age 24. I switch between tobi and cayston, I'm on tobi and other ivs this month. So this includes that as well. 7 am : cefapime 10 am: albuterol, pulmozyme, vest 10 min, tobi 2 pm : albuterol, hts 3%, vest 10 min 3 pm : cefapime 4 pm : levoflaxacin 6 pm : albuterol, hts, vest 10 min 10 pm ...

Hello, I'm 24 (25 in June) and have cf. I'm going through the evaluation for a double lung and liver transplant now. The other people on here have given some great advice. It's been a very time consuming and stressful process, you hear the statistics and see other people not make it through and...