Country Concert for Cystic Fibrosis

Arizona–moving

jeana — Fri, 01 Jun 2012 07:15:59 +0000

Originally posted in Cystic Fibrosis - Adults

Well, I have lived in Alaska for the last 11 years and this year my health has declined a lot. We have decided to move to Arizona, but I keep hearing negative things about lung health and Arizona and now am questioning it.

Here were my arguments in favor of Arizona:

1. The cold in Alaska tends to be really hard on me, so I was thinking heat might be just the thing for me.

2. I also have bad seasonal allergies–molds, grasses, trees, weeds… So my thought was that Arizona has less of these things.

3. And, in Alaska I get a lot less sunshine time, so very low vitamin D levels which inhibit my healing. Again Arizona could take care of this for me.

4. Dry Alaska to dry Arizona–no change (I went on a 10-day trip to Florida and was miserable because the moist climate made me constantly have sinus drippage and coughing. Even Benadryl couldn't dry me up. LOL)

5. More CF doctors to choose from in AZ–only 1 in Alaska.

6. Family in AZ, no family in Alaska.

What I have heard that concerns me: dust/wind bad for lungs, Valley Fever, other allergies

So, anyone have advice, info or opinions? Thanks!

Menstrual Cycle

Angel2393 — Fri, 01 Jun 2012 06:06:54 +0000

Originally posted in Cystic Fibrosis - Adults

Hey girls:

I started getting my period at the age of 14. Ever since then they have always been normal, and come on time- 27/28 days. I am 19 now and for the past 2/3 months they have been 32 days and this month its 31. I just got my period yesterday and now its gone today…. This has never happened to me before…does CF make u have irregular periods that can last a day?? Me and my boyfriend have unproctected sex if that changes anhything. im just worried please help.

thanks.

Cystic fibrosis related Narcolepsy????

Incomudrox — Fri, 01 Jun 2012 00:44:28 +0000

Originally posted in Cystic Fibrosis - Adults

Someone enterain me here…. this is my running theory.

Narcolepsy is believed to be caused by hypocretin cell death in the brain. It is also believed that this happens in some cases due to a autoimmune response.

Cystic Fibrosis can someone have autoimmune issues as we well know. A lot of us have issues sleeping or staying a sleep for one reason or another.

My theory is that CF's autoimmune "feature" is killing off hypocretin cell receptors in the brain, thus resulting in "Cystic Fibrosis related Narcolepsy"????

Anyone??? Bueller????

Embarrassing issue with cf

Vampy — Thu, 31 May 2012 23:11:47 +0000

Originally posted in Cystic Fibrosis - Adults

WHO has problems with body oil blowouts!? and what do you do about yours? how have you delt with this problem, i need help. Mines recently over the past 2 years and would love some advice on what to do, how to manage it, and how to tell someone you love incase you have an accident at night? i had one the other day, my boyfriend works swing shifts and works night that night. Thank god, i tried to hide it and change the sheets clean the hell out of them. I don't know what to do really…i'm about to start buying Black EVERYTHING !!

Aspergillus IgE

katethekid — Thu, 31 May 2012 23:11:46 +0000

Originally posted in Cystic Fibrosis - Adults

I was at my clinic this past week and the doctor did an IgE blood test. I have received the results, but I have no idea what they mean. My score was 13. I'm not currently culturing aspergillus, but he wanted to check since I had cultured it in the past. I guess it has a tendency to stick around. Does anyone know what this score actually means? They said the range is 0-100 for the IgE. From what I can tell online this is a RAST score. Any info is greatly appreciated, thanks

Liver Issues

TonyaH — Thu, 31 May 2012 21:42:18 +0000

Originally posted in Cystic Fibrosis - Adults

Andrew was just discharged after a 5 day admit to get started on iv therapy. While there initial labs (before meds were started) showed increased liver function. This has happened before, but only after he has been on antibiotics, not before they even started. They ran a liver ultrasound while we were in the hospital and it did show an enlarged liver and spleen, but nothing the doctors felt needed treatment yet..

I was just curious as to others who have had frequent high liver function lab results and enlarged liver on ultrasound..how high were your numbers? Andrew started off like three times the normal limit for liver enzymes, GGT, alk phos, etc.,. Second lab results showed lower, but still elevated numbers. I'm just wondering if this is something other clinics would treat, or if these results are typical of a watch and wait plan.

We have a great team…just curious what others have done and what the outcome has been.

Thanks!

Jack Black Loves "The Power Of Two"!

AndrewByrnesCA — Thu, 31 May 2012 18:56:58 +0000

Originally posted in Cystic Fibrosis - Adults

CF adults and friends:

Golden Globe nominated actor/musician Jack Black calls “The Power Of Two,” the award-winning documentary about twin sisters with CF, "an inspiring triumph of the human spirit against unfathomable adversity . . . . a brutal and beautiful tale of shared survival.” Learn more at http://www.ThePowerOfTwoMovie.com/ and http://www.Facebook.com/ThePowerOfTwo.

You can pre-order the film on iTunes at http://tinyurl.com/PO2iTunes, and it will download next Tuesday, June 5, when the film will be released nationwide. Starting that day, you'll also be able to watch the film on Cable/Satellite TV Video On Demand on Comcast, Time Warner Cable, DirecTV, Dish, AT&T U-verse, inDemand, Cox and Cablevision. For complete details, go to http://www.ThePowerOfTwoMovie.com/digital/.

Thanks for watching!

With every breath,
Andrew Byrnes

May celebrated cystic fibrosis awareness

fibrosis news — Thu, 31 May 2012 18:06:22 +0000

Originally posted in Fibrosis News

May is Cystic Fibrosis awareness month. Cystic fibrosis is a chronic disease affecting the lungs and/or digestive system.

Disability (SSI)

Robinranae — Thu, 31 May 2012 07:56:57 +0000

Originally posted in Cystic Fibrosis - Adults

Anyone receiving SSI for disability related to CF? I'm fixing to turn 18 and have not had a job. I was told if I got a job then my SSI would be cut out and I receive that through my insurance. Problem being, I NEED INSURANCE. What is a good alternative? I'm a bit confused. I was told that I may never have to get a job in order to keep receiving payment for my meds and stuff. I need help/advice. Thanks!!

Tumor Blocker May Fight Fibrosis

fibrosis news — Thu, 31 May 2012 05:57:10 +0000

Originally posted in Fibrosis News

Connective tissue holds our bodies together, but in a condition called fibrosis, an overabundance of the material devastates organs such as the liver, heart, and lungs.

new, pls help

cmiller — Thu, 31 May 2012 04:59:36 +0000

Originally posted in Cystic Fibrosis - Adults

Hello,

My brother is 46 and has been sick for years; diagnosed with CF via sweat test yesterday.

He has lost so much weight, has circulation problems, abdominal pain and just copious amounts of thick mucus. He has no insurance. He lost his job and also kicked out of National Guard 2 years ago bc he was too sick to work and has been looking for diagnosis since 2006. He is not on any medication and does not as of yet have a doctor to follow up on the CF. He has been to the emergency room multiple times over the last few years and they say they can't help him. He had CT scan that shows multiple cysts in his liver, blocking biliary ducts but rest of abdomen looked okay on CT scan.

My concern, he says he feels his body is shutting down. He can't think straight, has not been able to pass stool for over a week. He is too weak, tired to get out of bed. He is eating but not much and doesn't seem like he is able to get nutrients out of his food.

It is 3 months before CF specialist will see him. I am not sure he will make it that long.

If I take him to ER again, what do I ask for? Is one sweat test enough to determine you have CF and start some sort of treatment? I am not even sure if there would be any medication available to help him.

Thank you for any ideas/advice.

Best,

Cheri

Everybody watch this video this kid is awesome.

Daverog75 — Thu, 31 May 2012 02:24:20 +0000

Originally posted in Cystic Fibrosis - Adults

http://www.youtube.com/watch?v=NSLx89Wx8MY

Dave 37 w/cf

Coughing

Vampy — Thu, 31 May 2012 02:24:20 +0000

Originally posted in Cystic Fibrosis - Adults

We all know coughing can get pretty intense, loud and violent. My coughing once a while ends up giving me back pains. Sooo my question is, what are some ways you guys have found to ease the coughing problem. Medicine or not, i still cough. I wake up my boyfriend, Vaul, when i cuddle with my son.

Also, side note, my son was tested for CF, and doesn't have it. Though he has the most common cf gene, g551d i think its called. And he has a chronic cough hes had since he was born and has salty sweat, i wonder if he could get these as a side effect of just having that 1 gene. Thoughts?

Chest Tightness, Thoughts?

ryry11 — Thu, 31 May 2012 02:24:19 +0000

Originally posted in Cystic Fibrosis - Adults

Hi guys,

So, I've been having some crazy bad chest tightness since early April, but my PFTs are AWESOME. My doc wants me to do a cleanout before school starts, but said she would consider doing it after school gets out if I wasn't feeling better. She didn't want to do anything when I went in yesterday because my PFTs were so good, other than up my Advair to 115/21. Any other ideas? I haven't had allergies before, but I'm wondering if it's seasonal allergies. I'm coughing junk up daily and wake up feeling like elephants are on my chest. It's better after I do a vest and Xopenex treatment, but I'm having to do a Xopenex neb treatment every 8 hours exactly, and in the past few days I've felt like I want to do it every 4 (but can't because the neb is long-lasting.) So I've been going Xopenex neb, 4 hours later an inhaler, 4 hours later a Xopenex neb. All day. Any ideas?

Oxygen at Night

peterose — Wed, 30 May 2012 23:19:27 +0000

Originally posted in Cystic Fibrosis - Adults

Hi Everyone,

It has been suggested to me that I start oxygen at night because my sats were on the low side. (lower 90's and upper 80's with walking). I am very nervous about it because I have never had to do this before. Anyone that is on oxygen at night, do your sat's ever go up again? Is this the beginning of a decline? What should I expect? I know that I should consider myself very lucky that I have not had to experience this yet at age 50, but that does not make it less scary to me.

Any information would be helpful.

Thank You – Rosie

Kalydeco Recommended For Treatment Of Cystic Fibrosis

Cystic Fibrosis News From Medical News Today — Wed, 30 May 2012 21:00:00 +0000

Originally posted in Cystic Fibrosis News From Medical News Today

About 60,000 Europeans suffer from cystic fibrosis, a rare and life-threatening genetic disorder that is caused by a mutation of the CFTR gene, which regulates salt and water transport in the body…

My aquagenic wrinkling factor test results.

Incomudrox — Wed, 30 May 2012 20:33:31 +0000

Originally posted in Cystic Fibrosis - Adults

So a lot of the time people question me. How do I know what I do is working? A side from increased exercise tolerance, ability to gain weight, no salt formation on my arms, forehead etc on hot days. One true test measured my the NIH is the Aquagenic wrinkling factor of the hands. The standard time for a normal person to exhibit wrinkling is 11 minutes. CF carriers average around 7 minutes, and CF patients around 2minutes. Below is the NIH study:

Aquagenic wrinkling of the palms in cystic fibrosis and the cystic fibrosis carrier state: a case–control study.

Abstract
BACKGROUND:
Aquagenic wrinkling of the palms (AWP) is hyperwrinkling occurring within 3 min of exposure to water. It is associated with cystic fibrosis (CF) and has been reported in a CF carrier.
OBJECTIVES:
To ascertain if AWP is a sign of the CF carrier state and to test for an association between cystic fibrosis transmembrane regulator (CFTR) protein function and time to wrinkling.
METHODS:
Twenty-one patients, 13 carriers and 15 controls were recruited. Hands were immersed in water and time to wrinkling was measured. An analysis of variance was performed with mean time to wrinkling as the dependent variable and CF status as the independent variable. Patients with a time to wrinkling of ≤ 3 min were defined as having AWP. A test of proportions was performed to assess if the proportion of patients with AWP varied between groups.
RESULTS:
Mean time to wrinkling was 11 min in controls, 7 min in carriers and 2 min in patients with CF. AWP was not seen in controls, but occurred in 80% of patients with CF and 25% of carriers. There was a significant difference between groups (P < 0·001).
CONCLUSIONS:
The study demonstrated that AWP is a sign of both CF and the carrier state. It suggests that time to wrinkling decreases with decreased CFTR protein function. Patients presenting with AWP should be offered screening for both CF and the carrier state.

2 minutes

7 minutes

11 minutes.

Nurse Case Manager through the ins.company

triples15 — Wed, 30 May 2012 16:32:36 +0000

Originally posted in Cystic Fibrosis - Adults

Hi everyone,

I changed to United Healthcare through my husband's employer in January. Yesterday I got a letter from a Nurse Case Manager saying she had been assigned to my case and is available to help me "manage my disease". Ha. It also said she has been trying to reach me by phone, which she hasn't. Neither my husband nor myself have received any calls/messages from them. I guess that's neither here nor there, but I guess the point is the letter just kind of irked me.

Anyway, as we know the insurance companies are all about the bottom line and trying not pay for anything they don't have to. I'm certain this is another attempt to for them to save a buck while trying to make it look like they're "helping". I guess my question is, have any of you worked with a nurse case manager through the insurance company? Has it actually helped in any way? I guess the only possible way I see it helping is by having one contact that I could call when I have questions regarding billing/coverage instead of a different person every time. However, I'm wondering if that's even within her scope of duties.

After 31 years with CF I doubt a nurse with very little to no knowledge of CF is going to help me manage it! I feel like it would just complicate things but I'm tempted to call her and see what it's about. The letter sounded almost threatening, but the way I'm reading it it's an optional service. Please let me know if any of you have thought/opinions or experiences with a nurse case manager.

Thanks!

IV antibiotics periodically or as needed?

jeana — Wed, 30 May 2012 15:08:15 +0000

Originally posted in Cystic Fibrosis - Adults

It seems there are two distinct opinions of CF doctors as far as PICC line/port antibiotic treatment.

Camp 1: Treat every CF patient with IV antibiotics every 6 months (or every year) whether they have low PFTs or not.

Camp 2: Treat with IV antibiotics when CF patient has a substantial PFT drop (like 10% is what my current doctor does)

Wednesday Night Chat !

beleache — Wed, 30 May 2012 13:48:51 +0000

Originally posted in Cystic Fibrosis - Adults

Hope to see you in chat tonight joni

Stocks in the Spotlight Tuesday

fibrosis news — Wed, 30 May 2012 01:45:19 +0000

Originally posted in Fibrosis News

Dow Jones Reprints: This copy is for your personal, non-commercial use only. To order presentation-ready copies for distribution to your colleagues, clients or customers, use the Order Reprints tool on any article or visit www.djreprints.com The drug maker saw shares tumble 11% after revising a report on its cystic fibrosis treatment to reflect … (more)

Moving to a new climate…?

ArmyWife13 — Wed, 30 May 2012 00:56:16 +0000

Originally posted in Cystic Fibrosis - Adults

So we're moving (see my screen name? Military explains it all) and this move will be to a place with 4 seasons, which I am ok with. I grew up with 4 seasons and survived. However, the move after that, which will be next summer (2013), might be to somewhere with a completely different climate, i.e. we might get moved to Florida – land of heat and humidity. Right now we live in the PNW, so basically we get very little heat, humidity or summer for that matter. Ha. We've been here for close to 7 years, with just a little time away for schooling in the middle.

I am a little nervous about this and the husband is more than ready to request elsewhere and pull some strings, but I'd love some feedback from anyone who either lives in that sort of climate or has made a move like that? Just worried I won't be able to breathe as well with the oppressive humidity

Thanks for any input

What allergy medicenes do you take that helps?

carly23 — Tue, 29 May 2012 16:45:17 +0000

Originally posted in Cystic Fibrosis - Adults

So i never knew we can take allergy medicenes..iv always sufferd and been tight chested thinking its just apart of my low fev..my doctor told me to try Clairitin or Zyrtec..so i trie clairitin 24hour 10mg white small tablet…i felt great within 45 mins!..i didnt feel the tight wheeziness and could breathe so much better. Now i ended up reading reviews on Clairitin that concened me..people were saying it made them very angry, depressed, hi anxiety, rapid heart rates, etc. With that being said there were like only two comments that were good out of 50 everyone was sayig the same..now i know we are all different but have any of you had experience with this medicene?..if so how does this help you?..i have also found i much dryer and in the mornings i always cough up some stuff..hould this alarm me?

So i just wanted to know what everyone takes that has helped them and if you tried clairitin did it work for you..

CVS/pharmacy launches in-store fundraising campaign for ALS, cystic fibrosis research

fibrosis news — Tue, 29 May 2012 16:16:15 +0000

Originally posted in Fibrosis News

CVS/pharmacy has launched a new in-store fundraising campaign named Advancing Medical Research, to support medical research and help improve the quality of life for those living with amyotrophic lateral sclerosis and cystic fibrosis .

Vertex Overstates Cystic Fibrosis Drug Benefit

fibrosis news — Tue, 29 May 2012 12:01:13 +0000

Originally posted in Fibrosis News

Fewer cystic fibrosis patients in the study saw their lung function improve by more than 5% following treatment with VX-809 and Kalydeco than was previously disclosed, Vertex said.

In need of Scandishakes

Terrie — Tue, 29 May 2012 05:18:42 +0000

Originally posted in Cystic Fibrosis - Adults

Does anyone have shakes and don't want them. Insurance will not cover them. Please let me know.

Does anyone need nutrition drinks?

krisgabes — Tue, 29 May 2012 03:38:36 +0000

Originally posted in Cystic Fibrosis - Adults

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!

Rallying the troops…. we need to get together on this

dramamama — Tue, 29 May 2012 03:38:36 +0000

Originally posted in Cystic Fibrosis - Adults

Hi everyone~

I have some crazy news that I think we all need to be aware of as we go forward in our agreement to take the vertex drugs. I had become increasingly concerned about CFers getting sick and experiencing more exacerbations as the vertex drugs were being discontinued after Phase II trials. While the vertex scientists are not all doctors, some of them are and I feel and felt like they were completely falling away from one of the principal precepts of medical ethics taught to doctors: First, Do no harm. Yes, the drugs are life-changing in a positive way (a cure even) and, for this reason, are harmful when discontinued.

Because of this I contacted a top 25 Lobbyist in Washington to just see if there was anything he could do to help us atleast get the patients who are volunteering a pass to continue the drugs when the phase II trials end (seeing as there is no glaring safety concern). While he had never heard of this issue with CF patients, he was very aware with all going on with Vertex and CF. He graciously contacted the Deputy FDA commisioner and addressed our concern….

According to the Deputy FDA commisoner: there is no FDA law keeping these patients from receiving these drugs following Phase II trials!!!! WHAT??? VERTEX has complete control and authority to allow these patients access to these drugs. Now, keep in mind, that is not all of us, but can we not agree that our community should stand behind these patients who are agreeing to take these drugs!?

According to the LOBBYIST, he said we must all rally together and agree to NOT SIGN up for trials, unless it is written in the contract that the trial patient is able to remain on the drugs after Phase II ends. We have the power. Vertex needs us just like we need them…. They can't get paid unless we agree to be a part of this… it is ok to stand up for ourselves in this way….sometimes the boat needs to be rocked.

Along those same lines, there is a bill going through Congress right now with approval (they think) by October that will allow drugs that are life changing to have a very different course of review and trial period. It is called the Advancing Breakthrough Therapies for Patients Act…. Basically, this allows companies to expidite clinical trials so that patients can get access to drugs possibly after Phase II trials. The company will have to conduct phase III trials even while patients have access to the drugs. GUYS, IF THERE WAS EVER A TIME TO CALL YOUR CONGRESSMAN IT IS NOW. The ExPert Act is also important, but the other will allow drugs to reach us much more quickly.

And, Finally…. Do you know how powerful our words are?? One of the reasons that Vertex released interim results from the 770/809 Phase II trials was due to the fact patienst were blogging and Vertex could no longer control what information was being released. From the CFO of Vertex at the Deutesche Bank Securities Annual Healthcare Conference last week:

"The safety finding was very strong and we want to accelerate the program into a Phase III setting. For us to do that we have to talk to regulators both in the US and Europe. We have to talk to trial investigators, patients are now blogging regarding the results and there was a corporate concern here about information getting out of the company and not being in a controlled environment. That is what drove us to the announcement"

It is time to make our voices heard… They need us as much as we need them.

read about the BILL:

http://articles.chicagotribune.com/2012-05-09/news/sns-rt-drugs-breakthroughl1e8g8a89-20120509_1_cancer-drug-drug-regulators-approval-of-breakthrough-drugs

suggestions for a good CF center and transplant center?

Swedishstar84 — Tue, 29 May 2012 01:59:21 +0000

Originally posted in Cystic Fibrosis - Adults

Hi, I've been thinking about writeing my final exam (university) in another country Usa, Canada. any suggestions for a good CF center and transplant center? What about the possible costs of hospital stays and check up, bloodtests etc? for one who is not from Usa or Canada.

thank you very much for your answers!

Hugs /Marie

CT scans and our little CFers

ponytails — Tue, 29 May 2012 01:59:20 +0000

Originally posted in Cystic Fibrosis - Adults

Hi everyone. My daughter just had a CT sacn which showed moderate to severe bronchiectasis in the right middle lobe and lingula. Just curious what other parents of young kids have found out from their own kids CT scans. Thanks!