Please help! Possibe CF? Sweat test needed after rectal prolapse in 2 1/2 year old

lundi 30 novembre 2015

Hello,

This is my very first time posting here. I never thought I would find myself posing questions in regard to CF and my children, as I thought any fear of CF would have been completely put to rest by my prenatal testing and newborn screening. Apparently, as I am learning, this is not always the case.

I just got back a little while ago from an over night stay at a children's hospital following my daughter's first experience with rectal prolapse.

After speaking with the gastroenterologist at the end of her 24 hour observation period, I learned that it is protocol to send children her age with rectal prolapse for a sweat test for CF. He sort of brushed it off, and I brushed it off as well. Then, of course, I came home and googled it.

I am currently quite terrified, because it seems she may have some symptoms of CF, and I am in desperate need of input. Here is a little background, please tell me what you think:

-She is 2 years and 7 months old. She tested negative for CF during new born screening, and I also tested negative for whatever gene mutations are tested for during early pregnancy- in each of my three pregnancies. She is my middle child, I also have two sons ages almost 4 years old and 10 months old.
-She has had severe constipation with abdominal pain for 9+ months. Her stool is often the size of a baseball and hard as a rock. Other times it is very soft, but no less painful for her to pass.
-She only had one rectal prolapse, which took place yesterday afternoon following an enema.
-Since birth, she has had very foul smelling stool. She can clear a room. It is much more smelly than my other two children.
-She has always had a decent appetite, but has never really put on much weight. She has been consistently in the 5-10th percentile for weight since birth. She didn't catch up to the 25th percentile until her 2 year well child visit. She is very petite.
-Since late infancy, she has had large, hard green "boogers" in each nostril, almost everyday and when she is not sick, nearly completely blocking her nostrils. They are huge. On the days she does not have that type of hard mucus, her nose seems to always be crusty and have "boogers".
-Lately (last few months) her eating and sleeping habits have changed. She eats less, drinks more liquids, and wants to sleep in our bed.
-She has never had breathing or lung issues that would signal a problem. She is currently getting over a viral upper respiratory infection (her lungs sounded clear) and her first ear infection.

In addition, I am thinking that my 10 month old son also has some concerning symptoms:

-He has a very large appetite and loves "solid" (baby) food. He eats a lot, and moves his bowls sometimes up to 3-4 times per day, often ruining an outfit.
-He is also on the smaller side- 25th percentile for weight.
-He has had what seems to be one cold after another for the last few months. He had at least 3-4 coughs in a row, and is currently getting over bronchiolitis and a double ear infection.
-He would often sound gurgly when sick.
-History of pyloric stenosis (6 weeks old).
-Passed new born screening for CF.


What do you think? Should I be very concerned? The sweat test is not yet ordered, as the gastroenterologist wants to schedule it at her 2 week follow-up appointment. That seems like an eternity from now. Do you think I should insist that my 10 month old be tested as well?

Any input or information you could pass on would be greatly appreciated! I am one extremely anxious momma right now!
Please help! Possibe CF? Sweat test needed after rectal prolapse in 2 1/2 year old

hill rom vest

dimanche 29 novembre 2015

I have Hill rom vest model 105 I need to sell. I have 2 vests, size child large in blue and adult small in pink. It comes with travel/storage bag, manual and extra hoses. It has 735 hours of use on it and works great. Email if interested threeeades@aol.com.
hill rom vest

Cayston

I have a 23 day supply of Cayston. If anyone wants it, PM me.

Bill
Cayston

job

samedi 28 novembre 2015

hi,
i,m new to this. just a quick question, do any of you pwcf work in construction? im apprentice carpenter at the moment, but i have been told by my doctor i had to give up cos of dust. so i am wondering any of ye out there are carpenter or builder or construction worker?
thanks
job

The first thing you need to do in terms of research doctor

The first thing you need to do in terms of research doctor to find out what allows your health insurance provider primary care. For example, you may find some insurance plans will be required for you to choose a new doctor from a group of people pre-approved. Others may offer some sort of monetary stimulus, if you go to the doctor, which is associated with the insurance plan personal injury. You need to find these things.
The first thing you need to do in terms of research doctor

Cayston

vendredi 27 novembre 2015

I have a 23 day supply of Cayston with a exp date of 3/17. If anyone wants it send me a PM.

Bill
Cayston

nasal polyps and deviated septum

I just went to the ENT Dr. on Monday because I've been having obvious signs of polyps. I can't breathe from my nose at all. It sounds like I have a cold because the polyps are blocking my airway. I've had polyps removed at least 3 or 4 times in the past 6 years. Dr. has mentioned they will always grow back even after removed. Just a matter of WHEN. Mine grow back about every one and a half to two years but this time they came back within only a year. I had surgery around this time last year. Dr. said he has the ability to remove polyps in his office but he couldn't do it with me because my nose is too narrow. He said because I've had so many polyps they have actually moved my septum over causing my nose to be narrow. So this time around I need polyps removed AND my septum fixed. Has anyone else had these problems? How is the pain afterwards? It's so frustrating. CF problems are never-ending. You fix one thing and another one decides to surface. Surgery is scheduled for Dec. 11th. I am so uncomfortable. I can't breathe and have terrible sinus headaches. My whole face throbs! I NEVER snore and some nights my poor husband has to sleep on the couch because it's so loud. Can't wait to get some relief. Thanks for listening. Hugs,
nasal polyps and deviated septum

Considering 2nd adoption

mardi 24 novembre 2015

We adopted a baby last year through the foster care system. Our sons biological parents are pregnant again. They asked us if we want to adopt the second one. I am 39 with cf. I work full time college professor and have my own fitness business. I am torn on the second child. I don't know how much harder is 2 vs 1 will be? We got our son at 6 months so he was sleeping 12 hours per night. Sleep is a big thing for me and getting sick. For those who have two can you share? I would be able to take maternity leave for six weeks and I am off from May to August. Sore torn???
Considering 2nd adoption

anxiety about hemoptysis

Hi all,

I've struggled with general anxiety off and on, so I know part of my fear is related to that. But I often have a lot of anxiety about having an episode of hemoptysis. I had my first hemoptysis while I was at work a few years ago and really freaked me out. I luckily got it under control and snuck out of work a little early without anyone really noticing anything was wrong. But I was quite shaken up by the experience, especially because I felt so alone at work by myself. Then over this past summer, I woke up in the morning to a bout of hemoptysis. I felt lucky to have been at home when it happened where my spouse was able to reassure me that things would be ok. Then just this week, I woke up in the morning again with a very small bleed. I ended up working from home to keep an eye on it. But all week I have had a hard time not worrying about it happening again. And I'm particularly worried about it happening while I'm at work or in a place where I'll be alone. And I'm also concerned that one of these times it's going to be a larger bleed and turn into more of an emergent situation. Am I just being overly dramatic? Or does anyone else have these fears?
anxiety about hemoptysis

A New Home for CysticFibrosis.com!

We have been working hard behind the scenes creating our NEW WEBSITE!

Every few years, we bring everything to new software.
It is an amazing journey!
2016 is our 20th YEAR~

Here are some stats you may find surprising!


Registered Users: 17,584
Forums: 28
Topics: 150, 231
Replies: 820,309

We have only kept records since 2003....so these are searchable conversations.

Watch this space!
Salt and Light,
Jeanne
A New Home for CysticFibrosis.com!

New CF vitamin DEKAs

dimanche 22 novembre 2015

Just wanted to let you know there is a new CF vitamin available called DEKAs - if you have any questions I will try and answer them for you.
New CF vitamin DEKAs

ABPA + Lung infection = pulse dose of steroids + IV antibiotics..

Has anyone been on a "pulse" dose of steroid to help with antibiotics/abpa? It seemed to do some good, but holy crap was that an awful experience. The dose in the hospital made me incredibly awake and wired. I slept for maybe 3 hours each of the three nights, and then I was released shortly after the third dose to resume my antibiotics at home. It was brutal just trying to get my brain to work to get medications together and get my way home.

I cultured my typical pseudomonas (and something new), with a huge drop in lung function and x-ray that showed a large portion in my large airway covered in a giant mucus plus - it was time for some IV antibiotics for me. I got my picc in 2 weeks ago, and spent an entire week at home on IVs before I checked myself into the hospital. My breathing was labored more than usual, and I realized I felt like I wasn't convinced the antibiotics were doing enough for me this time. I got into the hospital, my IGE level (which they use to monitor my ABPA) was around 3000~+ (normal people go upto 300, apparently). I've seen it as high as 6000 without many of the abpa symptoms. Now I'm feeling the symptoms and they didn't seem to get better with IVs - so a hospital visit seemed most appropriate. They discovered a GIANT mucus plug constricting a large airway in the middle of my lung.

In the hospital, the doctor recommended a pulse dose (a really high short dose) of steroid, to get my apba under control and to allow antibiotics to work better. The difference on my xray was incredible.

Now a few days later, I'm still getting over this "fog" the steroid put me in. Easily one of the worse medical experiences I've had thus far. Not being able to think clearly is really tough when going through being sick and trying to stay positive from CF, and then pair that with my inability to find a job and running out of borrowed money to live, and it's been quite awful! Thank everything I am that my girlfriend was here to keep my life moving, just as normal. Wish it was easier for everyone to actually focus on your health. This "american dream" we live in of: work till you die (erm, retire?) doesn't really work when I'm falling apart in my late 20s. More wishful thinking wishing I could change things out of my control.


Anyone had a similar experience w/ the steroid?? I'm interested if the pulse dose of steroid is a new thing, or if it's been used in the past for other things with CF.
ABPA + Lung infection = pulse dose of steroids + IV antibiotics..

Double Transplant for CF?

I just received my packet for my transplant testing and was reading through the material. I will be going to Cleveland Clinic. While my lung functions are still in the mid 40's I'm curious as to what I've been reading. I know I won't be listed as a critical person (my doctors wanted me to get on the list so I'm there in case I get really sick and they start to fall again). In the packet it said CF patients usually get a double transplant. I was just curious if this was the case for everyone or have any of you only gotten a single transplant. I would think it would vary per patient, but it sounds like at Cleveland Clinic that this is a standard. Wondering what your experiences have been?
Double Transplant for CF?

Maintaining your Portable Generator

samedi 21 novembre 2015

In the same way as other different bits of crisis gear, we don't consider keeping up a compact go down generator until the requirement for it emerges. It's similar to with crisis electric lamps that we continually neglect to change the batteries in – aside from that a generator can control your whole house. As winter tempests approach, with conceivable substantial icing and winds that can topple trees and electrical cables, this is the ideal opportunity to protect that your convenient generator is prepared to keep you warm and lit up on account of a force blackout.


Ensure your generator fuel is new and stable


As something that doesn't get much in the method for use, the fuel in a generator is frequently disregarded. In the event that you think you'll be stowing your generator for quite a long time without running it, make a point to purge the fuel tank and keep fuel close by. A distinct option for depleting it is to add some fuel stabilizer to the current fuel and run the generator, permitting the stabilizer to flow. In any case, make a point to top off some fuel jars if a tempest is en route with the goal that you can keep the generator experiencing the force blackout. Additionally make a point to store them securely, in light of the fact that risky stockpiling can be much more terrible than not having force.


Change your generator oil, and keep additional close by


In a generator, the oil is pretty much as essential as the fuel. The oil keeps the parts moving easily, which is imperative for a bit of apparatus that may should be keep running for quite a long time or even days on end. Ensure the oil is perfect and thick, with practically zero dregs. Likewise make a point to keep a couple of additional quarts close by, as a few generators will consequently close off on the off chance that they recognize low oil. This is extraordinary as far as sparing the motor, however will bring about the loss of force when it might be required.


Check replaceable parts


Much the same as whatever other little motor, the sparkle attachments, fuel and air channels, and carburetor all should be stayed away from develop and in great working request. Keeping additional flash fittings around is a smart thought, in the event that they would quit starting in a crisis. The channels ought to be taken a gander at occasionally, while the carburetor ought to be cleaned just when fundamental, as it can require a careful tear-down for cleaning. Additionally, keep some additional o-rings and repair parts around just on the off chance that you would need to make a fast repair to the generator.


Keep in mind to utilize your generator securely and ensure that there is legitimate ventilation. Generators ought to dependably be keep running in a range autonomous of the primary living space to maintain a strategic distance from carbon monoxide harming, as there are cases each year of carbon monoxide harming and fatalities from running generators in encased spaces. Be protected, and keep the force o
Maintaining your Portable Generator

Nebulized Colistin & Join Pain?

Hi Everybody,

For those of you who nebulize colistin, have you noticed any joint or tendon pain?
I neb it every other month, and I've begun to notice that 2-3 weeks into the months I'm on it I start getting pain in both my hips and shoulders.

I'm wondering if it's related to the colistin. Any insight anyone?

Thanks!
Nebulized Colistin & Join Pain?

zythromax long term?

vendredi 20 novembre 2015

Hi. No diagnosis yet for my 8 yr old daughter. Just had more blood work done today. Waiting on results of PCD panel. Depending on results, will see CF doc in WI or head to indy or cincy. So, daughter was sick recently. Xray showed probable partial lung collapse and possible pneumonia again. Trying to get sputum sample from her. Pulm wants her on zythromax MWF all winter. I don't know what dose but pharmacy double checking before dispensing b/c high dose. I guess this is used as preventative for inflammation. Anyone heard of this?
zythromax long term?

I'm 36!

jeudi 19 novembre 2015

Holy Cow! I'm 36 today, folks! PFTs 96%. STILL GOING! CF WON'T TAKE ME DOWN JUST YET!

<3
I'm 36!

Wearing masks in public may help wearer from getting flu

For anyone who has heard of the sudden decline of CF patients after getting a mild cold or flu, some to the extent that they are now on ventilator, I believe it is imperative to wear a disposable mask in public places such as the grocery store, mall or hospital during flu season. Who cares if people look at you funny? Better to get curious glances than end up on ventilator. Our lungs are fragile and deserve protection.

Advice from mayo clinic:

Should I wear a flu mask to protect myself from the flu?

Answers from James M. Steckelberg, M.D.
It can't hurt and it might help. Some studies have shown that using a surgical mask can help prevent influenza. And using a surgical mask and an alcohol-based hand sanitizer was shown to reduce the number of influenza-like illnesses in a group of students living in a college dormitory even more than using a surgical mask alone.

People who live in community housing — such as college dorms, nursing homes or military barracks — are at higher risk of influenza infection because they're in contact with more potentially infected people.

Flu viruses travel through the air in droplets when someone with the infection coughs, sneezes or talks. You can inhale the droplets directly, or you can pick up the germs from an object — such as a telephone or computer keyboard — and then transfer them to your eyes, nose or mouth.

Flu masks may help block airborne germs, and they may also prevent the transmission of germs from your hands to your mouth or nose. However, the best way to prevent influenza is to receive the flu vaccine, either via an injection or nasal spray.

With

James M. Steckelberg, M.D.
Wearing masks in public may help wearer from getting flu

Working on disability - SSDI

Can anyone relate recent experience with working while on SSDI? Have you been audited by SSA as a result?
Working on disability - SSDI

Fascinating back story on vertexs step into cff

mercredi 18 novembre 2015

Fascinating back story on vertexs step into cff

NSAIDs inhibit ovulation

mardi 17 novembre 2015

I think this is worth posting in the Pregnancy forum, as people with CF are often put on a regimen of Ibuprofen. It was not one of the three NSAIDs tested, but it's perhaps relevant nonetheless, especially at the CF dose. And even for CFers not trying to conceive, this may help understand your cycle and it's relationship to your meds (as well as things like weight, stress, and infection).

http://ift.tt/1Vb2gUa

"The women were assigned to one of four treatment regimens: diclofenac 100 mg/day, naproxen 500 mg twice daily, etoricoxib 90 mg/day, or placebo.... 'All control patients on placebo ovulated, but ovulation was far less frequent in patients who were on NSAIDs,' Dr Salman reported."
NSAIDs inhibit ovulation

long term linezolid

Hi, I'm new to this forum. I don't have cf, I have bronchiectasis, but I have had mycobacterium abscessus for 2 years, and intermittent pseudomonas, so many of the threads here are very relevant and useful to me.
I've had various iv regimes and am currently on imepenem and tigecycline with azithromycin.
I specifically want to ask for experiences people have had using linezolid.
I've had it for short periods ( 4 weeks at 600 mg a day) and sense that it helps ( sensitivity is intermediate) My physician is very cautious about side effects (which I like) and he's reluctant for me to have it longer, he's particularly worried about optic neuritis.I've not had any visual problems, but do get peripheral neuropathy in my feet, which mostly wears off when I stop it, though I have some residual tingling.
Apparently new guidelines for abscessus in cf are due to be released soon and will suggest longer term linezolid at 300 mg.
I'd just be interested to know if people have taken it for long periods,what dosage? what monitoring if any of your vision have you had? have you had side effects?

Just want to add that I'm in awe of all of you. I had good health till I was 50, can't imagine how you have lived with this since childhood and stayed so positive.
long term linezolid

the recalls we never learn about!

lundi 16 novembre 2015

So a couple weeks past when getting a new delivery of drink supplement the coordinator discovered that there was a recall covering the product we had, but thankfully it wasn't the lot we had at home. From our discussion it sounded like medical supplies etc are usually handled from the suppliers and thus not published more broadly, so I went to fda.gov to request email updates of various recalls in the event. A couple days ago the following came through. This looks like it's been an issue for years and who knows what the hospitals/clinics are doing. Augh.
Endoscope Washer/Disinfectors by Custom Ultrasonics: Safety Communication - FDA Recommends Health Care Facilities Transition to Alternate Reprocessing Methods
AUDIENCE: Risk Manager, Gastroenterology, Pulmonology, General Surgery
ISSUE: In accordance with a Consent Decree entered in January 2007 with Custom Ultrasonics, the FDA ordered Custom Ultrasonics to recall all of its Automated Endoscope Reprocessors (AERs) from health care facilities due to the firm’s continued violations of the Federal Food, Drug, and Cosmetic Act (FD&C Act), applicable regulations, and the Consent Decree. FDA is recommending that health care facilities currently using Custom Ultrasonics AERs transition away from their use to alternative methods to reprocess flexible endoscopes as soon as possible.
As part of the FDA’s ongoing investigation into infections associated with reprocessed medical devices and AER devices used for cleaning and disinfection, the FDA has been reviewing the validation test methods and performance data for all AER manufacturers. To date, Custom Ultrasonics has not demonstrated that its AERs can adequately wash and disinfect endoscopes to mitigate the risk of patient infection.
The FDA’s most recent inspection of the Custom Ultrasonics’ facility in April 2015 documented continued violations. Violations include the inability to validate that the AERs can adequately wash and disinfect endoscopes to mitigate the risk of patient infection. The identified violations could result in an increased risk of infection transmission.
BACKGROUND: AERs are free-standing units used in health care facilities to disinfect flexible endoscopes and scope accessories between uses. Custom Ultrasonics AERs are intended to wash and high-level disinfect cleaned flexible endoscopes used in gastrointestinal and pulmonary tracts.
RECOMMENDATION: The FDA recommends that health care facilities currently using Custom Ultrasonics AERs transition away from their use to alternative reprocessing methods as soon as possible. Facilities are advised to:

  • Identify and transition to alternate methods to reprocess flexible endoscopes, such as manual high-level disinfection, liquid chemical sterilization, alternative AERs, or other cleaning and sterilization methods according to the endoscope manufacturers’ reprocessing instructions.
  • Before transitioning to an alternative method, be sure that the endoscopes your facility uses are compatible with the alternative method by referring to the endoscope manufacturer’s reprocessing instructions.
  • Submit a report to Custom Ultrasonics and to the FDA via MedWatch, as described below, if you suspect your health care facility’s Custom Ultrasonics AER has caused or contributed to patient infection.

Healthcare professionals and patients are encouraged to report adverse events or side effects related to the use of these products to the FDA's MedWatch Safety Information and Adverse Event Reporting Program:


Health care personnel employed by facilities that are subject to the FDA's user facility reporting requirements should follow the reporting procedures established by their facilities.
the recalls we never learn about!

Pseudomonas Aeruginosa Erradicated

I was wondering if anyone on this board has ever known or heard of anyone diagnosed with CF getting Pseudomonas Aeruginosa and then completely eradicating it through antibiotic treatment (verified by a specimen via bronchoscopy)? Thank you.
Pseudomonas Aeruginosa Erradicated

Please help!!!

samedi 14 novembre 2015

i HAVE A 14 YEAR OLD SON THAT HAS HAD HEALTH PROBLEMS HIS WHOLE LIFE. HE HAD RSV WHEN HE WAS A FEW WEEKS OLD, FAILURE TO THRIVE AT A COUPLE MONTHS OLD AND PNEUMONIA EVERY WINTER FROM AGE ONE UNTIL ABOUT 11. WHEN HE WAS 4 WE NOTICED HE WOULD WHEEZE AND STRUGGLE TO BREATH WHILE WATCHING TV WHICH WE THOUGHT WAS WEIRD BUT WOULD ALWAYS SELFCORRECT IN A FEW SHORT MINS. AFTER A FEW MONTHS WE NOTICED THAT HE WOULD STRUGGLE TO BREATH AND THEN WOULD END UP IN THE BATHROOM WITH DIARRHEA.....EVERY SINGLE EPISODE!!!! IT STARTED OUT HAPPENING ONCE A MONTH AND PROGRESSED INTO 2 OR 3 TIMES A WEEK. WE TOOK HIM TO MULTIPLE DRS AND HOSPITALS AND HE HAS HAD EVERY TEST DONE KNOWN TO MAN. NOBODY HAS ANY IDEA WHATS GOING ON. WE NOW REFER TO HIS EPISODES AS ATTACKS BCUZ THATS EXACTLY WHAT HAPPENS TO HIM. SOB, DIARRHEA, FEVER, SPO4<80, HIVES (OCCASIONALLY), EXTREME PAIN, TONS OF MUCUS. IN THE LAST 10 YEARS THERE HAVE BEEN TIMES WHERE HE WILL GO SYMPTOM FREE FOR A FEW MONTHS AT A TIME, BUT IT ALWAYS REBOUNDS AND HITS HARD SOON AFTER. HE HAD A SWEAT TEST DONE BUT HE HAD A NEGATIVE RESULT. ALLERGY TESTS SHOW HE HAS NO ALLERGIES TO ANYTHING, NOT EVEN LEVEL 1 ALLERGIES, YET HE ALWAYS HAS A RUNNY STUFFY NOSE AND SNEEZES ALL DAY LONG. IVE ASKED HIS DRS AND HIS PEDIATRICIAN SAYS ABSOLUTELY NOT, BUT HIS GI MD HAS SAID ITS A POSSIBILITY. MY SON IS TO THE POINT THAT HE DOESNT WANT ANYMORE TESTING DONE!! HES SICK OF GETTING NO ANSWERS AND HE SAYS HED RATHER SUFFER THROUGH IT THEN SIT IN A HOSPITAL FOR WEEKS AT A TIME. I GUESS WHAT IM WANTING TO KNOW IS IF ANYONE THINKS WE ARE HEADING IN THE RIGHT DIRECTION....I DONT WANT TO PUT HIM THROUGH ANYMORE UNNECESSARY TESTS IF I DONT HAVE TO. ANY HELP WOULD BE APPRECIATED. IM SICK OF HEARING THAT IM A PARANOID MOM AND THAT MY KID IS FINE!!! PLEASE HELP!!!
Please help!!!

aquADEKS on Ebay

vendredi 13 novembre 2015

In Europe and Canada, the aquADEKs multivitamin drops (pediatric) is no longer available. In Europe there is still no substitute.
I would like to know if there are aquADEKs available in USA.
I found aquADEKS drops for sale on ebay (bluemedical) but I'm not sure if the product is still on production.
Is it possible the aquADEKs for sale on ebay is not the original?
Someone has any knowledge about this?
aquADEKS on Ebay

Cystic fibrosis smartvest airway clearence vest machine

jeudi 12 novembre 2015

Selling 2 BRANDNEW ( Barley Used) SMARTVEST Machines
Asking 7,500 a piece!
OBO
Comes with
- Vest machine
- vest ( teal, or purple)
- Carrying case
- hose
- user manual

One vest has only 65 hours on it
unsure of the second

*** EMAIL FOR MORE DETAILS ***
I do have paypal, and am able to ship anywhere, may asking for shipping depending where you live.

Email- Aprillynn2195@gmail.com
US ONLY CAN TEXT 717- 404-7054
Attached Images
Cystic fibrosis smartvest airway clearence vest machine

Surviving on Disabilty

I've always been one of the "lucky ones" with mild CF. Of course things have declined over the years, but last year I was still doing well for a 36 year old with CF. In 2014 my FEV1 was hanging out in the low 70s. Then I caught a bad bug September 2014, and within 3 days I went from being healthy, to laid out in the hospital for 3 weeks, on oxygen for the first time ever, with an FEV1 of 51%. I've been struggling ever since. I had another drop and round of IV antibiotics in May, and my FEV1 now ranges from mid 50s to mid 60s. I tried to return to work afterwards, but between the exhaustion and shortness of breath it was just too hard. I left work at the end of July, and am currently receiving temporary disability and exploring Social Security.

It's been a real struggle slowing down my life, but I've also been struggling against my doctor. He's pressured me not to give in to the "disability label," and to work part time instead of full time. The thing is, part time work isn't going to pay the bills, especially if I keep going out on IVs for 3 weeks every 6 months or so. My hope is that I can get Social Security, and then have the freedom to work part time while still having a safety net when I get sick. In the meantime though I'm having a lot of insecurity about my decision, and often feel like I'm just being a baby and should push through this.

I'm wondering if anyone else on disability/social security can tell me about where they were at health-wise when they made the decision? Also, how do you cope with the loss of structure and purpose to your day? I don't have a partner or children, so my job was really the main focus of my days. I'm having a very hard time motivating myself to get out of bed each day, because my schedule is usually empty. Fortunately I have a good therapist helping me work through these changes, but I'd love to hear from others who are dealing with this.

Thanks!

Eliana
Surviving on Disabilty

Smartvest SQL by Electromed inc. for sale (machine and cord only)

mercredi 11 novembre 2015

Hi, I have Smartvest SQL for sale. Works great, it has 84 hours of use. By Electromed inc. Please email me with offer.
Thanks Email:
Urkidn@sbcglobal.net
Attached Images
Smartvest SQL by Electromed inc. for sale (machine and cord only)

Interesting new clinical trial for 661/Kalydeco

lundi 9 novembre 2015

Was checking to see if next generation details were at clinicaltrials.gov and didn't find but discovered this study, which I hadn't been aware of:
http://ift.tt/1QeBnev

It is a small study for 661/Kalydeco, not the Phase 3 for homozygotes going on now, but a Phase 2 looking at "extrapulmonary systems." Primary end point is mucociliary clearance, and secondary endpoints include (beyond FEV), change in gastrointestinal pH, change in sweat chloride, change in nasal potential difference.

This is interesting to me because the FDA at the Orcambi discussed (if I recall correctly) that FEV isn't a great marker for whether the drug works. And if they are able to find other markers to show it works, it could mean more can benefit (i.e., heterozygotes or non df508), because it can show other benefits beyond FEV to establish it is working. And this would be true for other drugs in the pipeline throughout the biotech field.
fwiw
Interesting new clinical trial for 661/Kalydeco

Dumped because I have CF...

Unfortunately another relationship has ended for me because the person I was dating decided they didn't want to deal with my CF. This is the third time this has happened to me. I do understand that asking someone to take it on is a big challenge for them and I don't want to be with someone who won't be happy. However I am now beyond scared to get rejected again because of something that I can't control. I've talked to my therapist about this but I don't feel she gets it. Those of you who are married or in a relationship, what have you done to make it work? I'm beyond lost at this point. I'm healthy for the most part and I'm open and honest about what's going on with me. Those of you who have spouses with CF, what advice can you give in telling someone about CF and how to help them understand what's involved.
Dumped because I have CF...

body image

our 15 yr old girl is obssessed with thinking she is fat. she is right about the size the doctor wants her to be. she does get a slightly puffy stomach after she eats. the orkambi hasn't helped because she hates eating food with fat in it. she doesn't care about whether it is a healthy fat. we have gone round and round over her treatments the last few weeks. any suggestions?
body image

How do I delete a post?

dimanche 8 novembre 2015

How do I delete something I posted?

Thanks!
How do I delete a post?

Depression & anxiety (a new way to cope)

jeudi 5 novembre 2015

Hey everyone :) Hope you all are having a good if not decent week. I can't believe it's November already! Feels great here in Cincinnati today. Unseasonably warm at 73 degrees. Wish it would stay that way. Anyway,

We get a lot of posts asking about how to deal with depression & anxiety so I thought I would post this in hopes of possibly helping a few people if any. Adult coloring has become insanely popular recently. I've seen coloring books everywhere I go so I decided to give it a try. You don't even need artistic talent to color! Coloring is for everyone. It's cheap and easy. There are simple designs available as well as more intricate ones. I suggest starting simple to avoid being too intimidated. Color with whatever materials you feel comfortable with. I've been using gel pens but I also love colored pencils. I would suggest starting with a set of 24 pencils to get a good variety of colors

Instead of sleeping all the time I've been coloring the past few weeks. It's even more relaxing if you light some candles and listen to soothing sounds or music. Rain, waterfalls, the ocean. Give it a try! You can frame your finished piece and display in your home or give as gifts.

Here are some examples I've done so far...






Currently working on this one. These designs are from the Mystical Mandala coloring book. You can get here:http://ift.tt/1WzXBvE
Depression & anxiety (a new way to cope)

Daughter has PCD- Primary Ciliary Dyskinesia

mercredi 4 novembre 2015

I recently posted a thread about my 7 year old daughter. She has symptoms of CF but very low sweat test results. One of you nice people posted about PCD- and that is exactly what the Pulmo Dr thinks she has. Everything that is written about PCD relates it to CF and says the treatment is identical and problems are similar- just caused by different disease. No wonder it was so confusing!

She's have CT of lungs next week, along with bronchoscopy. We're starting the acapella device today. Saline breathing treatments. Continued treatment for asthma- although at the moment the immunologist and pulmonologist think she may not even have asthma.

The diagnosis today was preliminary. There is still some question as to her immunity because she's not showing immunity to certain imunizations that should be responsive. So there could be some underlying immunodeficiency going on in addition to the possible PCD.

They will do genetic testing on her in December. And interestingly, some of the faulty genes for PCD are the same as for CF!

I'm going back and forth between being excited at getting a possible diagnosis finally and crying because my baby really is sick. I kept secretly hoping the doctor would tell me she was fine and I was just overly worried. I feel vindicated that my gut was right- and devestated to know she's very sick and it will never be gone.

I really appreciate this forum and those who've posted.
Daughter has PCD- Primary Ciliary Dyskinesia

New Sodium Chloride Clinical Trial

Anyone's child in the new clinical trial for a new sodium chloride neb treatment? DS13 has an appt next week to see if he is eligible. It only lasts 4 weeks: 2 weeks off sodium chloride, and then 2 weeks in the trial for the new med.
New Sodium Chloride Clinical Trial

I need to find someone who did a full gene scan before 2006 to find their mutation

Someone I know needs to prove that this test was available before 2006 for their litigation against the genetic counselor who told them the father wasn't a carrier. Any replies would be deeply apprciated - either to this thread or please PM me.

Thanks so much!
I need to find someone who did a full gene scan before 2006 to find their mutation

terrible adhesive allergy, possible iodine allergy connection?

mardi 3 novembre 2015

My daughter has terrible reactions (not just a little redness...I mean blistering, weeping) to the tegaderm and adhesives associated with the tune ups and PICC line. She also broke out all over her chest last year in what I think was an allergic reaction to the cleaning agent they used for appendectomy, possibly betadine? Iodine? Does anyone know if there is a link? Please, does anybody have any helpful advice, new products, ANY input on this? Tune up is coming, and we are nervous. Thank you for your help.
terrible adhesive allergy, possible iodine allergy connection?

What is your dream hospital?

lundi 2 novembre 2015

Having CF we can't avoid going in the hospital and since we've got to be there for so long it can get old really quick. What do you envision the hospital having to make the best stay for CFs? And how does it compare to what's at your current hospital?

I can't really say how things are for the CFs cause I just moved and honestly don't know. But I think what would make a great stay would be snacks, treadmill, DVD player, video game system, movies, small refrigerator, ect .....
What is your dream hospital?

Anyone go to Tulane in New Orleans?

I moved and the center I'm going to be going to is Tulane. Does anyone go there? I have an appointment with the doctor next week and I'm pretty sure I'm going to be admitted to the hospital. I put this in this thread because I would like to know what it's like being in the hospital there. Anything you can tell me about being a patient there I'd appreciate.
Anyone go to Tulane in New Orleans?

I had an idea.. fitness wearable to help CF in all ways

dimanche 1 novembre 2015

So I think using some software, some sensors -> specifically the newer technology out (sensors) we can make fitness bands that are specific to CF (but could help others!). And the best part is, I think if we can measure and interpret the data correctly, we can provide CF users with accurate information based on the sensors, which can help improve the quality of life (or help us predict potential failing points in our body). The technology is limited (i don't think it can predict PFTS... yet), but it's just an idea that we may be able to exploit the new sensors that are being introduced into society for our benefit as a CFr. Here's what I got so far on this idea:

Generalizations:
-Fitness wearables are steadily increasing in tech, and I think it can help us manage our life with CF
-I think with the right data, you can predict when your body is "losing" the CF fight, which could help with intake of more nutrients and increase of treatments
-Fitness wearables aren't THAT expensive
-The tech is there, the data is not.

Background:
I've been doing a lot of reading tonight on the Bioimpedance sensors included in the UP3 fitness bands. These bands are new (and so is the tech) and I think we can utilize them to help us make informed decisions based on our data (compiled over time). I think this because the sensors can measure different variations in Oxygen in your blood by measuring and manipulating the electric energy in our system. I think if we used sensors in key locations that we could potentially be able to log and collect data that will tell us CHANGES in that kind of data. What do I mean? Well basically there are new fitness bands that will emerge that will allow us to collect data using electronic sensors. It uses safe frequencies to transmit data from one sensor to another, and measures the changes in the frequency. I know a little bit about this from my research tonight but there is still ALOT to learn. They use sensors in electrons when monitoring various functions for complicated surgeries like brain and heart surgery according to my friend whose wife specializes in this field of medicine! Such exciting technology. So, what do I think we can do for a CFr? I think we can measure heart rate, combined with the advanced sensors to tell us advanced data about our blood and body. I _think_ we can use this data in an evolutionary way to potentially predict or detect problems. Why do I think this will work? I think we can all agree that in today's society, we just don't have enough data about our bodies. I think fitness wearables can help us with this and already are. You can wear one to tell you how you are sleeping, they can track your heartrate to tell what stage of sleep you are in, right now. That cool data, presented in the right away can be used to establish baselines and help predict declines so you can make educated decisions based on this data.

What's a Bioimpedance sensor?
Jawbone’s new UP3 wrist band uses a single bioimpedence sensor to cover three bases: heart rate, respiration rate, and galvanic skin response. According to the company’s own blog post explaining the technology, “The sensor measures very tiny impedance changes within your body. For heart rate, we are measuring the impedance changes created by the volume of blood that is flowing in the Ulnar and Radial arteries.”
The same sensor, worn around the wrist, will also be able to tell respiration and hydration by looking at metrics like oxygen in the blood. It does this by using four electrodes that drive a tiny bit of electrical energy to each other, and then measuring the results.


Source: http://ift.tt/1LLj9x7
More reading for Up3's tech: http://ift.tt/1Q4YLKw

Are there other things that use the biosomethingoranother sensors? Well I found something called an AngelSensor, which was funded by Indiegogo and is being released to the public as an OPEN SOURCE platform. This seem to be the most promising for my cause, as the other devices won't have the ability for users like myself to really develop anything to help.


OKAY so I know this is a lot to read, and this is a lot to explain. I am assuming at this point in my post you are either genuinely intrigued or confused, and it's really based on my explanation. Given how excited I am to type this to you all, I will assume that I did a subpar job. Here's what I'd like from you: Opinions.

Please answer my quick questionaire and if you'd like to reply privately, PM me!

  1. Do you use any fitness bands? Do they help you with your CF?
  2. Do you think that a CF-ready kind of fitness band would be helpful to you?
  3. What kind of things would you really like to see out of a fitness band? (Think big!)
  4. What kind of DATA do you think we can use to help make the life of a CFr better?
  5. If this was available to you, at no cost, how do you think this would help?
  6. Any other thoughts or opinions?



TLDR: Here's the quick summary:

I think we can use fitness bands to help with CF. I think this because the sensors coming out in the massproduced fitness bands will enable us to collect data and make informed decisions based on the combined collected data, such as heartrate, blood oxygen levels, blood oxygen saturation, and other data! We can utilize this based on our input of data (PFTs, summary of how we feel) and MAYBE, we can help make our lives easier, and collect data for people with much more funding and time, to help other CFrs for years to come.
I had an idea.. fitness wearable to help CF in all ways

If you are lucky enough to have health insurance

If you are lucky enough to have health insurance, you can contact them and take your insurance and contact information primary care, asking for the names of several family practitioner can make things a lot easier. Your insurer has called them, because they automatically assume that you and your loved ones will be for the best suppliers weight loss for men.
If you are lucky enough to have health insurance

People dentists, optometrists, and have direct access

People dentists, optometrists, and have direct access to these services and physician, or other means, which should not be approached reference source. This is the flip side of the head, Henderson Chiropractorexperts during the investigation; they are effective for the musculoskeletal system, such as primary health care providers do not have to report. They are well educated in nutrition and general health, experts of the musculoskeletal system in most of the first four. People dentists, optometrists, and have direct access to these services and physician, or other means, which should not be approached reference source. This is the flip side of the head, Las Vegas Chiropractor experts during the investigation; they are effective for the musculoskeletal system, such as primary health care providers do not have to report. They are well educated in nutrition and general health, experts of the musculoskeletal system in most of the first four.
People dentists, optometrists, and have direct access