Kartageners Syndrome, PCD, Immotile cilia syndrome

[lynnie25]

Hi Rachel,

Sorry for the late reply. Any news on the biopsy yet? I know it can take 6 to 8 weeks.

I was glad to read you are seeing an ENT. My sinus problems have become quite debilitating. Tons of pain and pressure. My maxillaries are completely filled, right frontal is blocked, there is tons of narrowing in the bone among other things.I had a CT done last year, 2 months ago and a sinus tap done last month. I'm having surgery(which is the last resort) on February 3rd. I'm sure this was the cause of my recent lung infection. I ended up with 50 days of antibiotics for the lungs(long story) and 20 days after that for the sinuses. I'm not complaining because it's been 4 years since I needed antibiotics. After surgery I will be back to daily sinus irrigation and will probably use the sinuneb for any flare-ups.
The daily chest pt(airway clearance) is so important. There are several ways to do it. There is manual chest pt, The Vest, Flutter, Acapella, thera-pep and good ole fashion aerobic exercise. I really love the vest but as Wrin said it's very expensive if your insurance company won't pay for it. It's about $16,000. I have the Flutter also which I find is very technique dependent. I've never tried the Acapella but it's less technique dependent from what I read. The trick to chest pt is to find what you are comfortable with. You will be much more likely to be compliant. It's a life long treatment so find what works for you if your doc agrees.

I hope you are doing well. It's freezing here in NY with a couple feet of snow laying around. Do you have bronchiectasis? How do you do in cold weather? I don't do well with very cold temps.

I've had swimmer's ear at least 3 times when I was a kid. Painful as heck. I got it 2 of the 3 times at summer girl scout camp. As a young adult I outgrew the ear stuff. It's great that you are a swimmer. Exercise is a good thing for us)

Take care and keep in touch
Lynnie25

[jerrie97]

No news yet. If the biopsy happens to come out negative, my doctor has no idea why I'm getting recurrent infections.

I'm sorry to hear that you're going through so much pain with your sinuses. Does the surgery help? I wish you luck with it.

By the way, what is sinuneb?

My sinus infection is worse in the maxillary area than the ethmoids. I also have blocked osteomeatal passages and a concha bullosa (sp?)

50 days of antibiotics?! Which antibiotic was it?

Chest pt has cut down on my infection rate somewhat. Drinking a ton of water helps with it too. I'm looking into getting a Flutter. One of my cousins has the Vest; she has CF. I put it on one time at her house, it's so heavy!

I live in NJ. It's really cold here too. Cold weather tends to make me wheezy and just plain short of breath. I can't wait until summer!!!!!!!!!!!!!!

[lynnie25]

Hi

The generator part of the vest is heavy. Every time they make a new model it seems to get a bit smaller. The newest one is really small. I checked it out at the PCD Family day last year. One thing that is fun that gets you coughing up stuff is jumping on a trampoline. It would be fun to get one.

For the lung stuff I took 10 days of Augmentin, 10 days of Levaquin, 1 dose of Augmentin which I ended up being allergic to (the hives where hysterical ) and 30 days of doxycycline. After that I took 20 days of Levaquin for the sinuses.

I sure hope the sinus surgery works. It will be my first one. I'm having endoscopic surgery with 3-D guided imagery. I had to wear a headset to the CT scan that they use for the 3-D images. It's kinda cool. The sinuneb is really awesome. It's a nebulizer for your nose so to speak. It's for inhaled antibiotics. The idea is to get the antibiotics to the areas you need them as opposed to orals that have to go through your body. I have several friends that use it. My ENT suggests it for use after surgery. I have too much blocked- in there right now for it to work.

I hope you get a definite answer on your biopsy. Do you know where they sent your biopsy to?


Stay warm and keep in touch

[jerrie97]

Hi!

Jumping on a trampoline sounds fun. I used to have a small trampoline in my basement, maybe I'll go down there and find it.

Wow, I didn't know there were different models of the Vest. Do they have different sizes for it too?

Why did they have you take so many antibiotics? Was it for bronchitis, pneumonia? The most antibiotics I've ever taken was a month's worth; an infectious disease doctor told me to stop them after then.

A nose nebulizer! Cool!!

My doctor sent the biopsy to the Mayo clinic. He says that it should be in soon and that it takes a while. I just got everything else back from the bronch though. They did a deep culture (or something) which came back with Strep pneumonia, ???S. Aureus???, and of course, my friend H. flu. They're beginning to think that the H. flu isn't causing much, but that the Strep pneumonia is causing most of it. I don't know where the other thing came from though.

[jerrie97]

Biopsy came back: negative. But now the pulmo wants me to have a genetic test for CF. I thought he completely ruled it out. Anyway, he upped by Advair to 500, gave me a Flutter, and some antibiotics, and a prednisone burst. I don't like prednisone..

How was your sinus surgery? I hope it went well and you're getting some relief.

When I get sputum cultures done, they don't rate it from 1-4. They just use words like "rare" and "many".

Hope you have a happy Valentine's day! I just ate a small box of chocolate..heheh.

Do you do any activities to keep your lungs clear, like running?

Do you use a peak flow meter? I'm looking to get one from somewhere. They're all sold out everywhere though.