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Haven't posted in a while, but for those of you still waiting, keep hoping. I will be 5 years post this June and things have gone really well. I've been working fulltime, traveling and exploring new hobbies. I've also met my donor family on several occasions---which was amazing experience.

Just wanted to say your completing the marathon one year post transplant was an awesome accomplishment. While I don't have any immediate plans to run a marathon, i would like to do a 5 or 10k in the next year. Congratulations, and hope you keep running.

Hello, Haven't posted for a couple months. Things have been busy as I am getting pretty close to transplant. I think there are a couple people still ahead of me on the list. I recently started inhaled Aztreonam through the Expanded Access Program. Aztreonam is the new inhaled drug nebulized...

Anyone take Culturelle brand probiotics? It has Lactobacillus GG. Supposed to be good for CF. I was thinking of buying some. It's about 20 bucks for 30 caps.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.youtube.com/watch?v=ls7ila3srzI ">http://www.youtube.com/watch?v=ls7ila3srzI </a> Josh Groban---Some of you may like it. It's called "Don't Give up."

I just got my port over a month ago and found out today it has to be replaced. They will replace it friday. It's kind of confusing what happened to it, but the catheter somehow moved and has come up close the skin. Maybe that would n't be a big deal but the scab where the inserted the...

Does anyone else have the microlife spirometer/fev1. It is an electronic digital spirometer that also reads fev1. I just got mine and my FEV1 was very close to what it was at the last clinic visit a couple weeks ago. It had actually increased by about 2 percent. Just wondering if anyone else...

I have had my port for over a month. I had it placed in my left arm just above my elbow. Now problems until a couple days ago. It was accessed up until last Thursday. The last two days I have had a shooting/burning type pain that comes and goes especially after bending my arm at the elbow. If I...

I started taking singulair a couple days ago and I think the effects have been positive. I noticed my Oxygen Sat is better during exercise and I have been able to increase my intensity the past two days. This is a big deal for me since I can't do a whole lot to begin with since my last fev1 was...

My home health nurses has tried one two occassions to access my port only to have to call on another nurse. Has anyone else had this nightmare scenario. I'm currently waiting for the other nurse to show up. This happened on Monday and the other nurse accessed it right away.I'm really getting...

Does anyone have or have used a portable oxygen concentrator? I know a company that makes one and it is only 9lbs. Do you know if insurance covers them? I have a concentrator in my apartment but it is huge. I don't see myself doing any traveling as long as I have this monstronsity.

I love the organic cranberry juice. I have always loved cranberry juice, sauce etc. With CFRD I had to cut back on the Ocean spray. A few months back I started buying the organic cranberry juice with (No added sugar). It's incredibly sour, but I love the stuff. Unfortunately its been giving me...

I was supposed to get a port through out patient last Thursday but I on Tuesday I felt I was too sick so I asked to be admitted to the hospital. They still put the port in on Thursday, and it went pretty well considering how I've been feeling. They put the port in my left arm and gave me...

<a target=_blank class=ftalternatingbarlinklarge href="http://health.usnews.com/usnews/health/healthday/071130/ibuprofen-preserves-lung-function-in-kids-with-cystic-fibrosis.htm ">http://health.usnews.com/usnew...h-cystic-fibrosis.htm </a> Perhaps some of you were already aware of this...

I think I set a record today at church today for people telling me " You really good." Funny, I feel pretty sick and my fev1 is 27 percent. (lol) Oh well. It could be worse. I could look sick and feel sick. I also have "good color." I have never understood that one, but I am pretty happy...

<a target=_blank class=ftalternatingbarlinklarge href="http://ap.google.com/article/ALeqM5ibqF8ZeVFinA0DgRtKEyhcasf1yQD8V3ICV80 ">http://ap.google.com/article/A...tKEyhcasf1yQD8V3ICV80 </a> Oddly enough, the main bacteria seen is Pseudomonas.

I wrote an op/ed to my hometown paper after they published there own op/ed saying that free enterprise should decide whether we are allowed to smoke or not. If you have anything I should add to it or any other suggestions let me know. I am so tired of hearing the same old smoking crap from...

Cafepress.com (if you search for cystic fibrosis) has some cool t-shirts and other cf stuff like stickers etc... One T shirt said "I'm on the cystic fibrosis diet. Wanna try it?" I thought that was pretty funny. Lots of other good ones too.

I've been on pulmozyme since I was a teenager (late 90's) and after about 10 years or so of inhaling it, I think its starting to bother me. I noticed it last year when I switched to the eflow that it made me more Short of Breath. I switched back the pari lc plus and it was fine. Now, even in the...

After my evaluation my doctor basically said I was too healthy to be listed for transplant. They will put me on the list in the future, but not unless I get sicker. Basically, I felt like it was the right decision. However, sometime I have bad days and feel like I should be on the list. I also...