I had some sort of sinus surgery last fall and was told to come back every week for 5 months for a cleaning. I could not afford that so I havent. I saw someone post somewhere that they do it themselves. Is that true and how? My surgery was very painful and my doctor told me it took him nearly 31/2 hrs. I don’t want to take a step backwards and have to go have it done again. Any suggestions?
You have already received some excellent advice from the group. I
personally experienced great results when I went to high altitude places. I
think because the air is thinner it is able to get into where the bacteria
is residing. Nothing kills bacteria like oxygen.
However, moving isn’t cheap. Would you be able to based on the fact that
you couldn’t afford your sinus cleaning? Also is your family where you live
now? They are a great support and you need distraction from your disease.
You can’t let it define you. Don’t forget your mental attitude will play an
important part of your health. If you are depressed, your immunization
system can be depressed as well. As you are struggling with managing the
disease you may want to talk to a counselor.
There are a lot of worse diseases out there. It sounds as though it is
primarily your sinuses that are involved so you don’t have an extreme
problem as some do when their lungs are the primary problem.
Let me know how you get on.
Shelagh
-----Original Message-----
From: ear [mailto:kartagener-cpt8965@lists.careplace.com]
Sent: Monday, May 05, 2008 7:36 AM
To: shelagham@cox.net
Subject: Re: [kartagener] adjusting to this thing.
Yeah I did get some great answers. I am not in a hurry to do it now. I have a lot going on. I just am thinking down the road. I have family who would go with me. I have a small family.
hi, Ozzy,
It would be a big help if you knew what they did to you. Was it windows they put in, or polyps they removed, or what?
I have a suction machine, but I am currently using a home-made arrangement that plugs into the hose on my vacuum cleaner. It works much better than the suction machine, and is easier to clean. Also a lot cheaper!
You can probably get a suction machine on ebay without a prescription, these days, and a lot more cheaply than I got mine, years ago, but you’re going to have to find a way to make it work well for you. the suction catheters you can buy work, but only if you thread them way up inside your nose, and that can be really painful.
The thing I use right now is a piece of clear plastic tubing from Home Depot, but the tip on it (the part that goes to the nose) is a little ‘button’ plug with a hole in it, made for me by another PCDer in another group. Using this little button tip means nothing has to go in the nose at all, only right up to the nostril. This, in combination with the better suction available from a vacuum cleaner, is what makes it work so well. With this, there is no pain, no effort, no having to be very careful not to poke the nasal lining too hard, etc. And it’s much easier to clean.
It’s possible that if you joined the Yahoo Kartagener’s group— kartagener_syndrome@yahoogroups.com
You could ask about the Wonderful Wally-Vac, and ask Wally if he’d make on for you. He’s offered to, before, and he does it for cost (my last one was $12.50, I think, if I remember right). He’s pretty weak and sick, so he might not be up to it, or it might take him a while to be able to do it, but it’s worth asking. You’ll never find a better deal, anyway!
As far as moving to a different climate, some people prefer dryer, some damper. One thing I WILL say, though, and I’m saying this because I used to BE a respiratory therapist myself before the PCD got me on the disabled list—do NOT listen to people who tell you that high altitude is good for your lungs! they have it exactly backwards. There is LESS oxygen at high altitude, not more. They must have been mixed up. Their lungs are probably happier with the dryer air, but eventually, if they stay there, the altitude will create problems for their lungs, and even their heart, given enough time there.
I speak not only as someone who knows the score, having been a resp. therapist for 23 years, but also as someone who lived in Albuquerque, which, like Denver, is a mile high (5200 feet). I did a lot more damage to my lungs staying in the high altitude for almost 30 years than I would have done at sea level, or at least at less than 1500 feet elevation. High altitude is fine for someone with normal lungs, but NOT for those of us with PCD. We can take it for a while, but not to spend years and years living there===it catches up with us.
I loved the dryer air there, but my lungs and sinuses didn’t. Albuquerque is dryer than Phoenix is, these days, since they have landscaped Phoenix so much and have so many golf courses and fountains and lawns and all sorts of things that require water. They’ve actually changed the climate in that city with it all. My mucus used to get so thick that my sinuses would be completely stopped-up, I’d cough and get something partway up, and then I would be suffocating, not able to get anything to MOVE, either up or down. Damned scary feeling! In fact, it was that, that first convinced me to get a suction machine—feeling like I couldn’t do it on my own, no matter how hard I tried.
Nowadays, I’m living at sea level in Charleston, and the humidity is often a bit TOO much, but the junk comes out a whole lot easier! I still have to drink a lot of water—boy, did I find out late in life, how much water it really takes to thin that stuff down! I also do hypertonic sinus rinses or flushes at least once, usually twice or more a day. That, even without suction, works wonders for me.
Try not to freak out over your PCD. It’s with you for life, and you can still have a pretty good life, too. Do you do nebs daily? If not, you should. What about CPT?
Laurel (52, PCD/SI, diabetes, SC)
— On Mon, 5/5/08, OzzyCoop kartagener-cpt8966@lists.careplace.com wrote:
From: OzzyCoop kartagener-cpt8966@lists.careplace.com
Subject: [kartagener] Sinus sucking?
To: shannielars@yahoo.com
Date: Monday, May 5, 2008, 3:03 AM
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this line will be cut off in your replyI had some sort of sinus surgery last fall and was told to
come back every week for 5 months for a cleaning. I could
not afford that so I havent. I saw someone post somewhere
that they do it themselves. Is that true and how? My
surgery was very painful and my doctor told me it took him
nearly 31/2 hrs. I don’t want to take a step backwards
and have to go have it done again. Any suggestions?__
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Here is what the Operative report says “Bilateral endoscopic anterior and posterior ethmoidectomy with maxillary,sphenoid, and frontal sinusotomy”. I have a nebulizer. I do the albuterol neb, .9% saline neb, and Tobrimycin every other month.
You might want to consider using hypertonic saline in a neb, as well as for sinus rinses. Do you do sinus rinses at all?
Laurel (52, PCD/SI, diabetes, SC)
— On Mon, 5/5/08, OzzyCoop kartagener-cpt8966@lists.careplace.com wrote:
From: OzzyCoop kartagener-cpt8966@lists.careplace.com
Subject: Re: [kartagener] Sinus sucking?
To: shannielars@yahoo.com
Date: Monday, May 5, 2008, 1:16 PM
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this line will be cut off in your replyHere is what the Operative report says “Bilateral
endoscopic anterior and posterior ethmoidectomy with
maxillary,sphenoid, and frontal sinusotomy”. I have a
nebulizer. I do the albuterol neb, .9% saline neb, and
Tobrimycin every other month.__
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Yes I use rinses. I am using the NeilMed brand salt and bottle. It seems to do the trick for me most of the time. I do well for a while then I get plugged up pretty bad. At least now since the procedure when I blow my nose and rinse 2-3 times a day I can get it pretty clear. Before I could blow and blow but nothing would budge. The flonase he has me using works well too. I am better but I have long way to go he said. I was in the hospital with pneumonia a few weeks ago and I asked to see him to have him check out my ears.
My lung doctor said he had a patient move to the ocean and that helped. Panama City florida I believe.
On those days when nothing will move the junk out of your sinuses, you should consider mixing up some hypertonic saline and trying that. It works like a charm for me. I usually use 3%, but on days like that, I will mix up 6 or 7%, and just use it for that one rinsing session—it REALLY gets stuff moving! It’s hard to use the higher percentage—all the salt makes my eyes water! But it sure works, when all the regular saline and the blowing and even the suctioning isn’t quite enough.
Laurel
— On Mon, 5/5/08, OzzyCoop kartagener-cpt8966@lists.careplace.com wrote:
From: OzzyCoop kartagener-cpt8966@lists.careplace.com
Subject: Re: [kartagener] Sinus sucking?
To: shannielars@yahoo.com
Date: Monday, May 5, 2008, 9:02 PM
~--------------- sent via
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~-~ OzzyCoop posted the message below in the Kartagener
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this line will be cut off in your replyYes I use rinses. I am using the NeilMed brand salt and
bottle. It seems to do the trick for me most of the time. I
do well for a while then I get plugged up pretty bad. At
least now since the procedure when I blow my nose and rinse
2-3 times a day I can get it pretty clear. Before I could
blow and blow but nothing would budge. The flonase he has
me using works well too. I am better but I have long way
to
go he said. I was in the hospital with pneumonia a few
weeks ago and I asked to see him to have him check out my
ears.
My lung doctor said he had a patient move to the ocean and
that helped. Panama City florida I believe.__
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http://www.copddigest.org/subscribe-digital/Digests/2007Summer.asp
if you can sign on to this, it has an article where to move.
but my computer is too slow.
----- Original Message -----
From: “OzzyCoop” kartagener-cpt8966@lists.careplace.com
To: elizabethashley@copper.net
Sent: Monday, May 05, 2008 6:02 PM
Subject: Re: [kartagener] Sinus sucking?
doctor’s…actually I never thought of it, but Washington state, although
they have the univ of wash and children’s hospital…they did me well…I
even went to the Mayo clinic as a child in Minn…but it was in Tucson ,
University
of Tucson…that did that nasal bx…and my group health
insurance when I was 20 did immune test, and I have
combined immune deficiency…I always say I had
to move to Arizona to find out my prognoses for severe
bronchiectasis, i was born with as a child…or lung disease. you might
say…
I think where ever we are…and where we go…
people will find negative and positive points…My faith
is my most important tool…and that is what has gotten
me through more stuff then what medical health plans can give us…gratitude…Life goes on…
Keep it Simple…
Since you are younger then me, I remember back in the 70’s having sinus surgery, and I asked for a room with a non smoker…the nurses thought I was nuts…I was working, and why would I request a room with no smoking, I said, "well maybe because I have had two lung surgeries already as a kid…they still didn’t understand, I guess I was ahead of times…