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Hey everyone! I know I haven't been on in a while but I thought I'd update you all in my transplant journey. I'm about 3/4 through all the paperwork. The next step is waiting for the call to go down to Mayo Clinic, Jacksonville, FL for evaluations and then I'll be added to the list! I'm a...

Hi all- The nutritionist at my CF clinic ordered me cases of Nutren 1.5 High Calorie Liquid Nutrition. It's in cans and made by Nestle in vanilla. It's 375 calories per can. Let me know how many cans you would like. I just have so many! I'd love to share!

I've been on Tigacycline IV for 3 weeks now and this past Saturday I got so dizzy that I fell right over flat to the floor. I have never had that happen before. Then again last night I got very dizzy twice! I looked up side effects and dizziness is a side effect of the medication. Has...

Hey everyone- Unfortunately I'm sick and back on IVs. I just got reaccessed yesterday. I'm no stranger to getting infections but this time around I have been spiking fevers for a week, the highest being 103 and that seems to be happening on a daily basis. My question is so- do you guys spike...

Hi everyone, It has been so long since I have been to a walk but my family and I are going to be doing it this year.  When I did my first one yeeeeears ago, I didn't really have a lot of respiratory involvement.  My biggest issues are within the digestive system.  Now however both have pretty...

Hi everyone, I thought I'd like to hear from some of you because maybe you could provide some insight. It has been over 2 months since I have felt well. I feel like the best I feel is in the morning and that is only a functional level of about 85%. Given, I have not had the best few months due...

Hey there everyone, I'm on my 2nd week on IV's, Cipro and Merrem. After the first week my calves and ankles began swelling like crazy. The more I'm on them the worse it gets, but they still swell even on a day where I try to stay more stationary at work. Unfortunately, my job involves home...

I have portal hypertension which is why my stomach is so distended all the time, but I've gotten asked if I'm pregnant so much that I've completely lost my love for shopping for new clothes and I'm wearing all black everyday to work. I don't like this new attitude I have. <img...

Hey everyone, I don't know if anyone has experienced or is experiencing this but I figured I'd give it a shot. I feel like it sounds stupid, bear with me! I sleep on my side almost all the time. Here's my issue, if I roll over to switch to either my other side or my back I go into a intense...

Hi everyone! My Christmas wish this year is that we ALL have a happy and healthy new year! I truly appreciate all of the support, advice, and encouragement that you all have given to me this year. I couldn't have done it without you... Have a very Merry Christmas! (I hope Santa is good to you!)

The nurse came to change my port needle today and we noticed that this is the second week that the flush has been very resistant. She told me that I should be speaking with the surgeon who put it in to be approved for a heavier Heparin flush, I forgot the name of it. She said there is most...

I have been on Creon 20 at 13 pills with each meal for the longest time and it doesn't give me any trouble. It seems like I've been reading on the forums more and more people on Zenpep. I know that it decreases the amount of pills one must take. Can anyone give me their experience with Zenpep...

Hello all, I will probably have to have sinus surgery sometime soon. I went for a CT scan yesterday and my sinuses are terrible. They have gotten much worse since 2 years ago (my last study). I just wanted to know what the surgery is like, recovery time, anything to expect, bruising, etc...

Hey, I've been on IV since the middle of July and the last two weeks that I've gotten my needle reaccessed, the skin under the plastic is SUPER itchy and a little blotchy. I'm assuming that it may just be irritated from being changed so much, but I just wanted to see if anyone else has this...

Hey there, I was at the clinic today for a follow up, I've been on IV for 2 weeks now and haven't gotten any better. The doctor said that she was puzzled because my sputum culture came back with E. Coli. She ran another culture to make sure that it was true so I'm waiting on those results...

Hey everyone, So the agency I work for has moved into a different location and to everyone's dismay, it has NO a/c. We all have to work in fans but the air is so humid and it feels like it's so dusty. I've been coughing like crazy and today while I was driving to work I think I tore something...

Hey everyone, I just got the Cayston and I got a free sterilizing machine with it. I have never used one before. My question is, how many times a week do you sterilize your neb cups and eflow machines? -kristen

Today the woman who did my PFT was telling me about Pulmonary Rehab. After this long bout with IVs and the condition my lungs are in right now, I'm starting to think about it. Has anyone ever done it before? Is it any different from going to a gym and doing it on your own? Any...

Hey! I just got the prescription for the new inhaled Aztraneum!! I'm very excited to try it. I shall let you all know how it goes once I get it! Has anyone else gotten their prescription yet?

Hello everyone, I've been looking into a CF clinic that I can go to in order to get a second opinion, like a full work up. I've been a bit disappointed with the one I go to, so I'd like to see a new CF doctor. We're looking for the best of the best. If anyone can give their opinions it would...