Search results

Hi, I noticed that Marjolein posted on another topic that she cultured Aspergillus post TX. Has anyone else? You guessed it, Anna did last month! Have no idea how, with all the dang precautions you take. She was clean in early Jan. just before returning to school. Then she started a little...

I have a question that I can't seem to find the answer to. Guess I could actually call the SS office and be put on hold for a lifetime but thought I'd ask ya'll first. Anna gets SSI. Does she need to file taxes? Do any of ya'll that get SSI file taxes? She doesn't work at all, never has. I'm...

Hi! As I said before, I know this has been covered before... what to do with excess supplies. Now that Anna has had her transplant we are overrun with excess supplies that Rachel doesn't use. Everything we have is for home IV. I have checked the expiration dates and am disposing of everything...

Hi Everyone, I just wanted to tell ya'll that Anna has gone back to college. She was so excited to go back to school and be back with her friends. She had her 6 month transplant appt. and all continues to go well. Although, I'm still waiting to hear final word about this last bronch. But she's...

Hi everyone. Things have been quiet lately. We got good news on Friday. They are going to let Anna go home this coming Friday! I think he was ready to let her go that very day but we said we wanted to stay and get in one more appt. before heading back. Not to mention we were not prepared to...

Hi everyone! First I want to thank everyone for your thoughts and prayers. It has been a whirl wind of emotions and newness. I can't recall the last time I was able to get on here. While Anna was in the hospital we weren't allowed to use our cell phones or a computer, even if it was on dial-up...

Hi, My daughter is going to apply for SSD and they want all the doctors she's ever been to. For most people that wouldn't be a problem, but we are recently retired Air Force. She has been to 9 different CF clinics in 6 different states and one country overseas. If SS wants to contact any of her...

I am still soooooo mad. Too many, should have thoughts running through my head. Here's what happened... Anna and I took off for California this past Monday for her transplant evaluation. We had a connecting flight in Houston and discovered that the walk from on terminal to the other was too...

Hi, We are back from my daughter's evaluation. I have to say we had a nice trip. Everyone was really super nice. All the tests went smoothly and quickly. Except for the lab, it seems there's always a wait there even if you are second in line when they open the door. All other appointments seemed...

Does anyone know if a fecal study is required when you tell your doctor you want to try a higher dosage of enzymes? My 16yr old daughter has been having more frequent stomach issues over the last year. She's never had an obstruction or anything like that but has had to go in once to have...

This may sound a bit crazy to some of you but if anyone happens to know I'd greatly appreciate it. Firstly, we have Pancrease MT16. A while back we had a prescription filled and the stupid, (yes I know, harsh) pharmacy put the enzymes into a large prescription bottle. They usually just slapped...

Hi, I'm Liza. I have two teen girls w/CF. One is 14, freshman in HS and the other just turned 18 earlier this month with graduation fast approaching in 17 days. I just wanted to ask if your girls are off to college this year or if one of them is already there? My oldest is going off this fall...

Almost forgot to post a message. Did anyone see the Today Show this morning? They talked about this new sandwich from Burger King that has like 730 Calories. They had a guest on today who said when asked by Matt Lauer if anyone could use a sandwich like this that there was NO ONE that could use...

I wasn't sure if I should ask this here or in Young Adult. First of all, my oldest (17) was just put in for IV on Monday. She has a port, that was placed two years ago. It was placed and left accessed for immediate use. As some of you may remember, she was not a happy person when it was all...

Hi this is Liza. I asked about clinic in SA. Are you guys talking about the same clinic? Candice you mentioned Santa Rosa but Amanda didn't mention a name. Is there more than one hospital there? I guess I should claify, is there more than one CF clinic there, I know there is more than one...

Emm, I hope you check back here. Thanks so much for your reply in the Portable Nebs topic. I wonder how a CF'er manages college life. My daughter has been pretty healthy this year. Thank goodness as the last two years have been awful. She was sick and on IV antibiotics every three months it...

I don't know what they are going to say but they are going to talk about CF.

Parents of teenagers or whomever, Now that summer is here, how do you get treatments done in the AM when they want to sleep in? The past two summers we have been moving so there really wasn't an issue but not this summer, we're staying put. (we're military) My girls love to sleep in when...

Now that summer is here and most teens like to sleep in can you guys tell me how you fit in your morning treatments? My daughters hate getting up in the morning but with summer here sometimes they don't want to get out of bed until late, almost afternoon somedays. Soemtimes not getting...