Great clinic day!

Well, he has lost another pound since his last clinic visit. His Fev1 is down to 81%. I should note though that I recently found out that he has not been taking some of his medications, and trying to do the Vest for a short amount of time. So, all of the responsibility of treatments is now on me. I have been extremely blunt about the future of his life if he keeps short changing himself.
The doctor had a good talk with him about why it's important to do his treatments. The doctor brought up the new Vertex medicine, and then the social worker and the nurse came in and talked about what they had learned at the recent CF conference. We all had goosebumps and I am completely amazed at how it is already changing people's lives. I am also amazed that CFers weight becomes normal when taking it. The doctor said it would be a few more years before it would be available for Azer to take. But the one thing they stressed over and over to him was, when he starts taking it, they want his lung function to be the best it can possibly be. It is possible that when he begins the new medicine, it could help him keep normal lung function for the rest of his life. If that isn't a motivator, I don't know what is!!
Also, they saw how extremely important running and being athletic helps CF in the long run. They had several adults with CF, and that was one thing they all had in common, being athletic and consistently exercising.
Lydia
www.AzersCFWebsite.com

Why Do I Run?

Running isn't pretty. Running outdoors tends to be even ickier. Cold wind cutting through my clothes. Blowing my hair into my mouth, trying to blow snot out of my nose, not always going the direction I intended. After work, as soon as they get home from school, I run. In the summer, waking up early, before it gets sweltering hot, I run. I won't lie. Often, I want to stop running and walk the rest of the way. Especially when there is a hill up ahead. Another hill. I want to wimp out.

I broke my little toe recently. Even while it is still sore, I run. Getting over a cold, I run. Irritated lungs from asthma, I run.

He runs beside me. Through lung infections, with IV's in his arm. Last fall, he ran coughing up brown mucus. Trying to battle fungus growing in his lungs. But, we run.

We aren't hard-core runners. We don't run very fast. Only 3 times a week. We only run 2.5 miles at a time.

The changes I have seen in his lungs the past few years we have been running, have been incredible. Even after his lung function decreased from a nasty infection, he bounced back faster than even the doctors expected. The amount of air he can inhale as increased. During our runs, he coughs up the junk that would otherwise stay at the bottom of his lungs.


We run for his lungs...

For him...

Joggers for Azer 2013

It's that time again! Less than 20 days till the Great Strides walk in Dallas! We have already raised more than $300!

This past year has been challenging CF wise. We did home IV's for the first time, and he battled a fungal infection for several months, and was on steroids to combat the allergic responds his lungs had to the fungus. Thankfully, his lung function has been relatively stable through all of this and has been extremely physically active!

The link to our Great Strides page is http://www.cff.org/Great_Strides/lilhyperfingers

Clinic Visit, Doc is happy!

So, when he started his first few blows on the PFT test machine, he was blowing at mid 80's. But, thankfully, with each try, it got higher. The highest was 94% Fev1. Not the very best I was hoping for, but definitely great, for not being on antibiotics for about a month. So, hopefully we have killed off enough of the Staph to keep it from causing symptoms for a while.

They did labs again, and if his IGE level (allergy response) comes back lower, they will stop the antifungal medication, and will wean him further off the prednisone.

He lost a few pounds, but they aren't terribly concerned about it, since he's appetite has gone back to normal  since he's been on the lower dosage of prednisone.

The doctor mentioned that in her study and research, she found that CF people that are on the antibiotic, azithromycin long term have better lung function and less lung infections. She said it also prevents psuedomonas from growing a biofilm barrier. Sounds great. We just have to make sure it doesn't cause excessive lose stools. If it doesn't, he will be on it as long as she deems necessary.

So, things are looking up. Baseball will be starting soon. He has been doing great on our runs. I'm the one huffing and puffing, and he barely even coughs after 30 minutes of running. I am thankful that things are getting back to normal!

Er Visit

So Thursday, I got a call from the school. The school nurse said he was doubled over in pain. A few minutes later, I got a call from the doctor's office. The results of his ultrasound were complete. She said he has gallstones. After I told her how much pain he was in, they wanted to admit him.

By the time I picked him up from school, he was still in a lot of pain. I had given him ibuprofen and picked up  medication from the pharmacy that is supposed to dissolve gallstones. The pain hadn't subsided at all, so the CF nurse suggested taking him to the ER. Yay, our favorite place, right?

After an entire evening at the ER, and one X-ray later, they found out that he was incredibly constipated. About 30 minutes after they gave him an enema, he was 100% back to normal. So, apparently, keeping the intestines lubricated is extremely important, even though he was having normal BM's.

So, it seems like the gallstones aren't causing any pain, but he will be on the medication to dissolve them for a while, to prevent any complications.

I am very happy that it was a simple fix, and nothing scary like organ damage.