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Has anyone here been diagnosed with PAD (Peripheral Artery Disease) due to CF, diabetes, etc? I have experienced what we thought was Peripheral Neuropathy from diabetes but has led to severe pain in legs, difficulty walking and a decreased pulse in my left leg. They are going to do some testing...

So far, I have taken 3 doses of Trikafta and am not experiencing any mucus purge. Has anyone else experienced no purge? I have been drinking water, eating fat with pills, and I am a ddf508.

kenna2 with all the different junk you were coughing up, what was your starting fev1? In a way, I am a little terrified of all the coughing from the "purge" because with my coughing fits I get SOB and panic, even with oxygen.

So you know the saying, "I live life in the fast lane, but my wife is a speed bump?" That is my husband and I. Today my husband said that he still loves me, but he doesn't like being around me anymore. Now before you get mad at him, understand what he's feeling. We have been married for 20...

Yay! Now I just have to get the paperwork from my clinic. I'm at 30% lung function and I'm always sick, but I'm hoping Trikafta will help me become more stable.

Is anyone received Tricafta since it has been approved, besides for compassionate use and actual drug study? When is it anticipated that pharmacies will have it?

So, a week ago I did not drop below 88% for my 6-minute walk, which was good in a sense, but all it meant was that I was having a good day. Today, I have been short of breath quite a bit. Luckily, Norco hasn't come to take my oxygen away yet but it will happen. I just wish other people...

I, too, am curious about your ages. My husband and I have been together for about 23 years. We are at way different places now at 41 and 42 than we were at 18 and 19. Honestly, my husband had a really difficult time when I first began being hospitalized. He almost left me because he thought I...

The headlines of articles stating that the Senate healthcare bill has failed due to senators saying they would vote no, made me feel very happy. (Although their are reasons for saying no are not necessarily in our favor.) Then I just read that at least three senators said they would vote no on a...

I think I will find out when they shock the pool to be "safer." Also, the lazy river walk is in the morning before the pool opens to the public, so hopefully less bacteria then. I was on the swim team too Kenna, my 6th-8th grade years. I also ran 3 miles races when I was a kid. I do think...

So, my FEV1 is in the upper 40's right now after being at 23% back in February. It has been a long recovery time and I have become very sedentary. Mostly because I HATE when I have an asthma like attack and can't catch my breath. However, my good friend invited me to an exercise opportunity...

We need to do this! A little boy's heart surgery bill goes viral about annual/lifetime caps! Anyone have CF bills they can share and pics doing treatments! http://www.cbsnews.com/news/boston-mom-hospital-bill-tweet-trends-amid-health-care-debate/?ftag=CNM-00-10aab6a&linkId=39169933 P.S. My...

Thank you Rebjane! Yesterday I sent my letter in to our state newspaper and I hope they publish it. I have already contacted my senators and called relatives and friends to ask them to contact their senators. If anyone wants to use and alter the letter I posted feel free. It is really easy...

I have heard that if you contact senators out of state, the email is disregarded and doesn't reach them. Is this true?

Jricci, I have heard that if you contact senators out of state, the email is disregarded and doesn't reach them. Is this true?

Should I even put the part about working and retiring? I was trying to personalize a little and show that I had worked as most cfers do until they no longer can, but maybe I should leave that part out??

I have drafted this letter specifically regarding annual/lifetime caps on pre-existing conditions. I need to verify the costs of my hospital stays, but are there any changes I can make? I value your expedient input Thanks! I have Cystic Fibrosis, a pre-existing condition. Cystic Fibrosis is a...

So here is a letter I drafted to email to representatives in reference to the caps. The only thing I am trying to verify is the cost of a hospital stay (that insurance covers, not my cost). I found a link to supposed costs and the amounts are laughable compared to what is truly being paid by...

Well, I gave the speech and the new nurses were very interested in what CFers had to say. I shared the ideas that you told me here and I was asked to come speak again to another group! Thanks for your help! :)

Where did you find the info about the caps not being reinstated for pre existing conditions? Could you provide a link? Thanks!! According to this article that I found, caps could be reinstated by state...