PCD part 2

Re-uploaded following my deleted account disaster!

Category:

Nonprofits & Activism

Tags:

• pcd
• siggy75
• pietv
• primary
• ciliary
• dyskinesia
• kartagener's
• syndrom
• immotile
• cillia
• cilia
• situs
• inversus
• dextrocardia
• bronchiectasis
• asthma
• inhalers
• medication
• cystic
• fibrosis
• physio
• flutter
• valve

[mary5brad]

My 9 month old son was diagnosed with situs inversus totalis with polyspleenia and we're waiting to find out if he has pcd. His doctor said that he does have noticable damage to the cillia in his lungs but not sure if it is from congestion or pcd. He has been congested since birth and although there are times he is not bad, it has been constant. His growth isn't affected though! 9 months and over the 50th percentile for 18 month old boys:) I'm glad this was posted, not many ppl know of either

[completepancake]

so many comments sutch a small amount of views (I have pcd to btw)

[TheMangaloid]

hello. I have pcd as well. I wanted to keep in touch with you if possible. Id like to know what your daily routine is as far as meds and treatments. Do you have the vest? Have your doctors mentioned lung transplant as an option for you? Do you exercise? how is your posture? Have you had to have sinus surgeries? How often are you given prednisone? Do you have asthma as well? Do you find any mental/physical exhaustion related to PCD?

[monica200527]

Thank you for this video trying to learn as much as I can about PCD

[wilterdrose]

I hope more research can be done, to help those with any of the types you mentioned.

I am sending you a giant hug for life :)

[wilterdrose]

I thank you for making this video (both parts). I'd never heard of this, and I'm glad I now have. I also admire you so much as I know it's hard to talk about any condition. especially when everyone with that condition is different.

I was wondering, how often you have to use your 'flutter'? Is it just when you feel you need to? It sounded like it works well, and seriously, the simple devices really are genius.

I'm going to read up on PCD and visit the sites you mentioned..

[JAM1230]

I have Kartagener's with situs inversus totalis. My entire organ stem is reversed and I deal daily with the issues surrounding the immotile cilia. I just recently had surgery to remove bone between my frontal sinus to allow more room for drainage-also had some scar tissue and polyps removed in my maxillary sinuses because everything was completed stopped up. I'm 38 and I can't even remember how many surgeries I've had since starting on treatment around the age of five or six.

[OzzyCoop]

I had a biopsy where they had a heart surgeon make 2 incisions on my right side of my rib cage. Go between the ribs,deflate the lung,remove a piece and then send the chunk to a pathologist. Pretty painful (apparently the drainage tube slipped and was loose inside of me poking my lung) but they didnt know what was going on so thats why they did it. If they even had an idea what it was at the time they wouldnt have done it that way. A very interesting disease.

[4merF]

Excellent!

Very informative...just what I needed.

My doctors are just starting to suspect PCD and I am just begining the diagnosis stage...CT scan of my lugs and sinues reveals lots of scarring already. Lots of mistreated infections over my 33 years of life.

Thanks for showing me the flutter valve...very cool (Who thinks of these things).

Thanks again! :)

Question...can you comment some more on diagnosis...you mentioned a biopsy.