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So I spent 6 weeks in the hospital this summer and was bombarded with meds, steriods, dialysis, etc. (you can read older posts on my blog www.kellibelieves.com if you want.) Well now my hair is falling out by the handfuls. I'm not kidding I shed like crazy. I had about 5 inches cut off my hair...

Well I was in the hospital for 6 weeks this summer. The dr said it started w/an asthma attack, whatever, I don't buy it. Then said I have vocal cord dysfunction, again, whatever. And then they said I had anxiety attacts when I was admitted, tell me why then, my bp was 80/120. Doesn't make sense...

I think her username is Let's Rock CF. I'm looking for her, for some reason I think her name is Em. I could be totally wrong! Last year she coordinated a huge CF fundraiser for a fishing tournament at Lake Erie. I want to know if she's doing it again, and if I can help. Can anyone update me...

I'm SO excited and thankful for this opportunity. I get to get up on stage and say a few words and many thank you's to the volunteers, walkers, and financial contributors to the GS walk. So help me, I'm not a great speaker. I want to introduce myself, thank them, and then tell them that I have...

OK, so I got a new vest last year because I had my original vest from 16 years ago. So the setting weren't correct (weren't strong enough), it was old, it was a beast, it was huge, it needed replaced. So I got a bill today for nearly $2,000 because insurance (secondary not Medicare) is stating...

I had my tubes tied 6 days ago. I am still bleeding and when I say bleeding I mean BLEEDING. I'm spoiled because my periods are really light, so I'm not used to this. If anyone has had their tubes tied, how long did you bleed? I tried looking this up on-line but I couldn't find a specific...

After my port grew yeast, had the ethanol treatment, it grew yeast again...meaning, that sucker has to come out. It's in my upper right chest (below collar bone 4" or so). I had a port in my left forearm but it got grabbed all the time when people wanted my attention. So I don't like that...

So after feeling like major crap every time my IV is accessed, I finally was heard and had a culture taken of my port. I have yeast growing, which means, I'm in the hospital getting treatment. I'm really ticked that NO ONE listened to me for years, literally, they just kept giving me zofran to...

I boil my nebs after every use. So they get a lot of wear and tear. I called the hosp. and asked them to call in a RX for my nebs so I can get a bunch of them so I'm not boiling them every other day. Well, nebs are not covered by insurance. For 5 nebs (side streams) it's $75. And I do ask for...

Well the title tells it all. Today is my big day. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Happy birthday to me, well it's almost over. I was going to post this a.m. but didn't get around to it. I had a good day, I went to work, got to see a friend for a while, went to...

OK, so when my port get accessed I get MAJORLY sick (fevers of 103 and higher, head ache, body ache, vomitting, etc). So today I opted for a PICC instead of my port. So far I'm not sick (The PICC lady said she thinks my port is infected...will have that tested). SO....I have this PICC but the...

OK, I get SSDI payments. Well I could make $10 K in 2007, I made $10,875 for the year. Well that puts me over the limit for monthly payments. (oops found that out too late) So what happens now? Do I lose this benefit? I need it. I can't pay for IV's on my own. Will I lose Medicare as well? Will...

Ok, I have pain in my left lung (it's ALWAYS in my right). Any deep breath, cough, bending over makes it hurt. What does it feel like when a plug is moving? Do you think this is the problem? I'm a little nervous over this pain since I've had a low-grade fever w/it. (99.1-100.8). I go to clinic...

Well I work out 3 times a week and recently I have been getting so nauseated when I work out. Like to the point that I feel like I'm going to vomit. It's awful. I am kind of sob, (with exertion)which is normal for me. I was getting a little drink of water like 1/2 way thru my workout. I'm not...

Hi Everyone, I am back on Tobi for this cycle. I started yesterday and I'm not feeling up to par. Coughing a bit more, moving more junk (not complaining about that). I took a nap yesterday and one today. But today when I worked out, my 3rd time this week, I didn't have 100% to give. I feel...

My right ear feels like it's full of water. Like I went swimming and it's all plugged up. Like I have a cold and it needs to pop type feeling. I'd been having issues w/my sinuses. Well my mom 'candled' my ear (put a special tube-thing in my ear & you light it to 'draw' crap out of your...

Hey Everyone, My clinic asked me to do a study for them regarding a 'dry' Tobi that you crush and inhale (like 4 crushed pills a day, think something kinda like Advair). It is still Tobi brand and the study lasts 6 months or so. <b>Here's my dilemma...</b> I just started Tobi inhaled last...

Hey all, Since my a.m. routine is an hour long, I end up reading blogs. There are a few I follow (Lawrenson family, Joshua Sams, etc) and I also go to tmz.com (to look at celeb pics) and of course cf.com. Do any of you have any blogs/websites you check daily? I have a couple that I really like...

I just started Tobi and it takes forever!!! I do albuterol, HS, and Pulmozyme. Then Tobi is last and my gosh, I sit here for ages!!! <b>How long should Tobi take</b>? BTW, I use the Pari neb. Thanks, Kelli

Well I've been on home IV's for 3 wks. and I'm still not feeling great. My cough is less often and less junky. I'm not as good as I want to be, where I THINK I should be. I'm on Merrem (every 8 hrs) and Tobra. Well my Tobra level was too high so rather than 're-do' it they just stretched it out...