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My CF doctor is my primary care for everything. My insurance wants me to have a regular PCP but I never use him. Everything goes straight to my CF doctor first since my CF is the main cause for everything and needs to be coordinated with my CF meds anyways.

The article I read stated 3 main reasons. 1) Universal Healthcare, 2) Different approach to lung transplants, and 3) Different approach to nutrition beginning at birth

I would suggest maybe seeing an Infectious Disease doctor. I have on since I've cultured Aspergillius in the past. He is great and has come up with different medications to use since I react badly to certain medications. I have my CF doctors consult with him from time to time. It helps to have...

I would still recommend getting the testing done anyways. That way you have it done in case you change your mind. At anytime you can always change your mind about going through with the transplant. Better to be safe than sorry.

I also agree with Gammaw. Ask your CF clinic to refer you to a ENT to specializes in patients with CF. Our cases is a bit different than someone without CF

The reflux could be the cause. I was on meds for it and they didn't work. Mine was really bad and required surgery to fix but it stopped the problem and the relief is amazing. Request that they do an endoscopy and there is a procedure where they place a chip in and it measures his PH levels of...

I felt that way when I was in the 40's for awhile. My suggestion to you (if you haven't already) is to get the process of getting on the transplant list going. The reason I say this is because the first round of testing is really long and demanding. It's a couple of days worth of stuff and it...

Benadryl to help dry up his nose. Also if he does nasal rinse, use 3 drops of Johnson and Johnson's baby shampoo with saline mixture to help break and clean out sinuses. My ENT who specialized in CF recommends this. My nose was running and I was sneezing a couple of weeks ago and I used this and...

Just a random thought about a dry cough. I know you stated he is having issues with GI symptoms. Is acid reflux one of them? The acid coming back up can get into the lungs and cause a dry cough. I was really sick for 3 years before we figured out this was the cause of me not getting better. I...

It's usually due to an iron deficiency(that's the most common). A change in diet can help or get a nail polish strengthener. Sally Hansen makes one and it's the best.

I agree. When you are completely blindsided by this it is a lot to take in. My list of issues is a mile long too. From the bottom of my heart I wish no one ever would have to know what this is like. I know it's a lot on parents. Mine talked with a therapist at one point to help them develop some...

Wii is good. It has dancing games and other stuff to help keep kids active. At my last hospital (Akron Children's Hospital) I attended when I got sick, they used the dancing games and others as part of our physical therapy. I also have a Playstation 3 which I play all my Lego games on. They are...

I have been fortunate enough to become family friends with my pediatric CF doctor, so I hear a lot of updates and exciting things when I see him. ALL of them are really encouraging! When it comes to the median survival age, try not to pay attention to it. First of all each year it increases and...

Tobi is given to battle Pseudomonas which is a common thing that is cultured in CF patients. Since this is new to him this could either be because he just started culturing it or the other meds used to treat whatever he was culturing have become resistant to one of the medications that used to...

Exercise with cardio, especially swimming laps, is a great way to lose fat. Diet wise, I always joke and say a liquid diet. I've had to be on one a couple of times for times when i'm backed up and when I had my stomach surgery to fix my acid reflux. I lost a lot of weight on it and it wasn't...

Yes to both of your questions. It can happen from time to time. Make sure you take it easy and ease back into it. Just be aware of how much blood and if it's more than a tablespoon to call your doctor.

I was diagnosed late too at age 7 and that was considered late in 1992. I also had phantom symptoms that many doctors thought were just allergies and stomach issues. I'm sorry for this challenge your son has to face now. However, the treatments and medications coming out for CF patients are...

I'm sorry you're dealing with this struggle. Orkambi has different affects on everyone. I actually had sinus surgery in December and that really helped a lot with my cough and breathing. What I do know from reading about others experiences with Orkambi is that lots of people get congested and do...

Heat is the best for sore muscles.

A friend of mine who I went to college with posted this video on facebook today. It's for the SickKids Foundation and I loved it and wanted to share it with you. It features kids who have chronic illnesses (CF was listed as one of them!) and them fighting and remaining strong. It made me cry and...