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Today, 12:54 AM

Mantaray29 replied to a thread Kalydeco sweat test and sodium chloride in Families

She started Kalydeco in 2012 and headaches appeared one year and a half after. Since then they did not disappear. She has no sinus issues and she...

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4 replies | 176 view(s)
Yesterday, 11:07 PM

stephen replied to a thread Reduce Treatments with Symdeko? in Families

Yes - I have significantly reduced treatments. When I started Kalydeco over four years ago, I was doing so well that I decided to try stopping...

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2 replies | 98 view(s)
Yesterday, 07:23 PM

Ratatosk replied to a thread Physiotherapy vests for baby's with CF, are they effective? in Airway Clearance Techniques

Take it one step at a time. She's still a normal baby, who just needs a few extra medications and treatments to keep her happy and healthy. In the...

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1 replies | 25 view(s)
Yesterday, 07:17 PM

Ratatosk replied to a thread 3 children, 1 with CF. Risk to child with CF if I have more? in Families

There are many people in the cf community who have more than one child wcf. We always intended to have 2 kids, but due to our age and dealing with...

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1 replies | 51 view(s)
Yesterday, 10:39 AM

Shelley started a thread Physiotherapy vests for baby's with CF, are they effective? in Airway Clearance Techniques

Hi everyone, I am new to the CF world so need some advice if possible. I had my 3rd child on the 20th August this year and she was admitted to...

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1 replies | 25 view(s)
Yesterday, 10:32 AM

Shelley started a thread 3 children, 1 with CF. Risk to child with CF if I have more? in Families

Hello everyone, I had my 3rd child on the 20th August this year and she was admitted to hospital the following day due to a bowel blockage, 7 days...

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1 replies | 51 view(s)
09-19-2018, 01:33 PM

Ratatosk replied to a thread Nebulizers for Travel in Adults

Thanks for the responses. I'm a little wary of the pari trek because I'd contacted pari years ago about using it with tobi and was told it wasn't...

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3 replies | 470 view(s)
09-19-2018, 01:27 PM

Ratatosk replied to a thread Kalydeco sweat test and sodium chloride in Families

Did the headaches just start with Kalydeco? Does she have sinus issues? I have heard people say when they started Symdeko they had headaches and...

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4 replies | 176 view(s)
09-19-2018, 12:28 PM

Mantaray29 replied to a thread Kalydeco sweat test and sodium chloride in Families

Thanks for your answer Ratatosk. Her annual bloodwork does not reflect any salt loss. She does not sweat much either. But the hospital doctor...

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4 replies | 176 view(s)
09-19-2018, 09:44 AM

erock77 replied to a thread Nebulizers for Travel in Adults

Hi, I use the Pari Trek S, the battery is a bit pricey so there's an option to just get the compressor. It comes with a car adapter or can plug in...

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3 replies | 470 view(s)
09-19-2018, 08:43 AM

Ratatosk replied to a thread Kalydeco sweat test and sodium chloride in Families

Check with your clinic. I would think annual bloodwork would reflect whether she needs it For the most part, if they stay hydrated, the large...

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4 replies | 176 view(s)
09-19-2018, 12:44 AM

Mantaray29 started a thread Kalydeco sweat test and sodium chloride in Families

Since my daughter started Kalydeco her sweat test has gone back to normal. However she is still being prescribed some sodium chloride. Is it also...

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4 replies | 176 view(s)
09-18-2018, 01:07 PM

Ratatosk replied to a thread Reduce Treatments with Symdeko? in Families

We did not. We continued to do the same number of vest and neb treatments each day. He still does albuterol/atrovent nebs, pulmozyme and tobi. ...

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2 replies | 98 view(s)
09-18-2018, 12:56 PM

scrapper1264 started a thread Reduce Treatments with Symdeko? in Families

So for those of you who have been on Symdeko, Orkambi, or Kalydeco, have you been able to reduce any of your neb treatments? My 15yo son just...

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2 replies | 98 view(s)
09-18-2018, 12:22 PM

Imogene started a thread Rare Disease Caregiving in America! in Families

I received this link from my minister at MarbleChurch.org...Reverend Gregory Johnson...he is a caregiver extroadinaire! Thanks Rev! ...

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0 replies | 43 view(s)
09-18-2018, 11:38 AM

Imogene started a thread Speaking at the Conference in Scotland in November! in Adults

Hi All! Know I will bring your words, the surveys! this is about Blockchain and Clinical Trials! ...

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0 replies | 208 view(s)
09-17-2018, 10:02 PM

stephen replied to a thread Nebulizers for Travel in Adults

Since using Kalydeco/Symdeko, I usually don't use Hypertonic Saline when traveling. I do however take an eFlow and a few heads that I keep for...

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3 replies | 470 view(s)
09-17-2018, 05:24 PM

Joshua020 replied to a thread Healthy High Calorie Foods (not so much dairy and sugar)? in Nutrition

Thank you for this post, it has helped me a lot, I have read also a similar article about that

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35 replies | 3735 view(s)
09-17-2018, 01:20 PM

Ratatosk started a thread Nebulizers for Travel in Adults

At home we use a 50 psi compressor for everyday use; however, on the rare occasions we travel or during the weekend at the family lake cottage we use...

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3 replies | 470 view(s)
09-16-2018, 11:36 PM

emason replied to a thread ΔF508 and R334Q in DNA and Mutations

No experience with r334q but my son has df508 plus a varying consequence mutation (which I believe r334q also is) and he is also dx crms. He's 4...

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1 replies | 477 view(s)
09-15-2018, 10:11 PM

rvanallen started a thread ΔF508 and R334Q in DNA and Mutations

I was curious if anyone was familiar with this combo? After some testing by the CF foundation, they discovered these are the mutations my daughter...

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1 replies | 477 view(s)
09-14-2018, 08:34 AM

SRains24 replied to a thread Any other transgender CFers out there? in Off Topic (Non CF related)

While not specifically trans(I’m Bi) my gf(M2F) is and my wife (not trans). I’m the only one of the three of us with CF. I actually didn’t know...

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4 replies | 332 view(s)
09-13-2018, 08:07 PM

PennyBK replied to a thread Any other transgender CFers out there? in Off Topic (Non CF related)

Hi Vinny - I signed up for BreatheCon 2018 today (here's a link with info: https://cff.swoogo.com/BreatheCon2018). I saw that one of the breakout...

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4 replies | 332 view(s)
09-13-2018, 07:26 PM

TheVinIsIn replied to a thread Any other transgender CFers out there? in Off Topic (Non CF related)

Thank you so much, Imogene!! This gives me so much hope for the future!! I'll see if I can get in contact with them. <3

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4 replies | 332 view(s)
09-13-2018, 08:11 AM

ymikhale started a thread mucoide PA second time in Families

Hi, My DD has cultured mucoide PA for the second time. THe first time was 1,5 years ago and since then she wsa clear. Our doctor said that they...

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0 replies | 297 view(s)
09-12-2018, 07:55 AM

Imogene replied to a thread Any other transgender CFers out there? in Off Topic (Non CF related)

Vinny: Thanks for reaching out! I did send this link to CF Nurse Tamika Grubbs. She quickly sent me this link: ...

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4 replies | 332 view(s)
09-11-2018, 10:11 PM

stephen replied to a thread What to expect with Kalydeco in CFTR Modulation and Gene Therapy Talk

For me, nothing. I've intentionally tried skipping doses a number of times. It takes missing three doses before I begin to notice changes. Then, a...

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11 replies | 10464 view(s)
09-11-2018, 09:31 PM

TheVinIsIn started a thread Any other transgender CFers out there? in Off Topic (Non CF related)

Hey forum, Living with CF has been difficult enough, but the past couple years have resulted in the realization that I'm trans (FtM). This wouldn't...

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4 replies | 332 view(s)
09-11-2018, 10:22 AM

Ratatosk started a thread Dry Cough/Symdeko in Adults

Has anyone experienced a dry/nonproductive cough on Symdecko? DS has been on it for about a month, ended up with a head cold a week or so after...

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0 replies | 829 view(s)