Search results

It is for me...I sleep in summer pjs and lightweight sheets all year round with my fan on. It helps.

He didn't really specify if it was with power ports or not; just ports in general. I'm doing some research on my own to see if I can find an answer. I do know that the power port seem to be the standard on what they are placing now because of the benefit of using it with other tests as well like...

Hey everyone, I just wanted to bring this information to you guys because my doctor noticed a trend with new med ports. I just got out of the hospital after a 12 day stay for a blood clot (that also resulted in a pulmonary embolism) that resulted from my new power med port being placed in...

First of all, the things you read online about CF are not always accurate. Each person with CF has a unique combination of issues, and it affects all of us differently. The best source of information on how CF affects us, is us as an individual. My boyfriend waited almost a year to tell his...

Wow....how amazing and how scary that must have been

Just a thought. When you see the GI have her tested for acid reflux. I wonder if this could be a factor in some of this. Mine was really bad and I have the same symptoms that she is suffering from. They had to do surgery to correct mine, but my life has been so much better since and haven't had...

There wouldn't be any birth control requirements for men as there is no oral birth control for men therefore nothing their bodies have to process. There isn't any drug interaction going on.

I have two sets of big med boxes for each day of the week (https://www.curediva.com/weekly-4-compartments-per-day-organizer.html?gclid=Cj0KEQiAzZHEBRD0ivi9_pDzgYMBEiQAtvxt-O66NvyBU7ILMz4CHncxKp4hc4NLDrmjIvAG92nkE-QaAkXI8P8HAQ) and so that way i'm not refilling every week and it's not so much of...

I'm sorry this is frustrating. While I don't have an IDU and do not take oral birth control (due to absorption issues I use NuvaRing), I might have an idea why this is being required. With the risk of CF patients not being able to absorb things well and the earlier studies shown that these types...

Unfortunately, time is one of the biggest things that is taken away from us with CF. Everything does take a long time to do, but as you know, it's better than being sick (which takes even more time away from everyday life). The best way to maintain a normal life with all these time consuming...

I'm sorry to hear about this rough patch you're going through. Sometimes just two weeks of meds don't fix whatever is going on. I've had some treatments that have been two weeks and sometimes as long as four. I've also had my doctors change meds on me because the one's they started with weren't...

My friend on Facebook who is a nurse posted this video about power washing the lungs for a rare lung disorder. It looks interesting and it made me wonder if this is something we as CF patients could have done. I know they do something like with when you have a bronchoscopy. With the added vest...

I know this is going to sound crazy but for someone with CF it's a good place to be. I live in Ohio about 45 mins from Cleveland. It's a great place to be. All the CF clinic's are amazing and The Cleveland Clinic is the top transplant hospital in the country. A lot of the doctors that I've seen...

CF patients can spread germs to each other. Which makes the stuff growing in our lungs more difficult to treat and more prone to infections. We SHOULD NOT be in contact with each other. Masks must be worn at all times if we are sick or healthy around other CF patients or in hospitals / clinics...

I'm the one with CF (I'm 31), but at one point my parents did end up seeing a therapist when I was in my teens. I currently see one and I think it's highly beneficial. We both have learned coping skills and how to communicate better to each other and it's made things a lot easier on both our...

The goal for this med was to keep the salt inside our bodies, keep lung functions stable, and reduce the time between IV meds. Depending on how this med works for your daughter, some things might change and some might not. I'm on Orkambi and I take the same things she does. The med works for me...

Yes, thank you for this community. Thanks to everyone I feel I have more information, control, and feel more prepared to deal with whatever CF throws my way. This site has kept me grounded and sane.

This does sound exciting, but I don't think this would replace IV's since the medication that is used needs to be administered via a vein. I think this is for things like insulin or other meds that don't require a vein. I could be wrong but that's what I got out of the article.

Pulmozyine can be used with the Pari e-rapid. However, Tobi SHOULD NOT be used with it. There is a specific way the e-rapid neb breaks down the medicine that allows the med to be delivered effectively but it only works with certain medications. Tobi is not one of them and should be used with a...

I use a large computer bag for when I travel. It fits everything in it. I use the Vibralung and that's compact enough to fit in with everything else i need. It's great and I do have a lot of meds that I need to take with me including insulin supplies. I still have room for more things which is...