Replies to This Discussion

Permalink Reply by Mike on September 11, 2009 at 4:00pm

i think it's solid advice to re-visit PAP technology from the vantage point of the year 2009. A lot has changed, and the change will most certainly work in your favor.

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Permalink Reply by Mack D Jones, MD, SAAN on September 12, 2009 at 9:23pm

Bradford, looks like you have gone that extra mile to get this thing under control, especially having a gastric bypass done to lose weight. Way to go, man! I don't know what your weight loss amounted to, but unless you are down to a normal BMI, you still have some work to do. The lower the weight, the lower the AHI for many who make the effort. There are case reports in which the AHI has dropped to 0 once an ideal weight is reached. You know how to lose weight, so keep at it and don't stop until your goal is reached.

My stent protrudes a quarter of an inch and is not visible when I wear a turtle neck shirt. Nobody knows I have one, unless they know me personally, because there is no protrusion to give it away. Check with your doctor and see if you can have yours cut down. Boston Medical does mine.

Not being able to swim is a bummer (I swam competitively and was a lifeguard as a kid). I am not so much worried about drowning if I fall in accidentally, but I am worried that some dirty water could leak into my trach and cause a nasty lung infection. I've never had one. I am still working on a waterproof system to permit swimming for guys like us. Maybe you could come up with something.

I never had a problem sleeping on my back. It's probably because I'm not overweight and don't have asthma and diabetes that you are having to deal with.

None of us is exactly alike. You have to find what works best for you and stick to it.

I have learned to love my trach because it is keeping me alive. When something better comes along I'll be at the front the line to give it a try.

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Permalink Reply by Karen Crabtree on September 15, 2009 at 10:59am

wow! Ihad a trach for a short period of time when I had to have 2cm cut out of my tounge because of cancer, but to have one permant? I have taken care of patients in their homes with them and yes they can be quite... not sure I could deal well with one permantly! the short time I had mine and was alert enough to know it kept falling out,getting lost in bed sheets,etc. and when it did come out I had th "blow hole" as I called it. good luck to u all I hope things work out for u all and keep trying new things,ask lots of question,do the reserach

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Permalink Reply by susan mccord on September 15, 2009 at 7:48pm

Hi Brad--I don't have anything to offer in terms of information. But I'm really sorry you've had such a tough time. I'm fairly new to the world of being an apnea patient, so am no kind of expert. I'm wondering what kind of support and education you had when you were in the process of decision-making. Also wonder if you were in a metropolitan area with a Med Center or a big hospital. There seems to be a pretty wide variability to the kind of services people get, depending on where they live or their access to advanced medical care. It kinda sounds (to me, at least) that you may have not had the guidance and help you needed at the time. Having said that, are you open to seeking out a specialist as a couple of people on SG have suggested? I hate the thought of anyone with apnea out there twisting in the wind alone, without an advocate......

I'm REALLY glad you've come to SleepGuide. This site is a treasure-trove of info and support. Sounds like you need both!! I know I sure did when I was first diagnosed. I had trouble tolerating CPAP too for awhile. This site has been a lifesaver. Your concerns are quite a challenge, both for you and for those of us who are ready and willing to support you. There hasn't been a lot of info re: trachs on here, mostly because ......well, I don't KNOW why. You're certainly not the only person who's had surgery for apnea. So I've been following this thread to see what I can learn.

Seems to me, Brad, what you've got going for yourself is that you're young, and that you've taken a really big step toward improving your health by having gastric bypass. Good for you!!! (And, BTW, I have two sons just a bit older than you, and I can only imagine how upset they'd be by not being able to swim......)

I hope you'll hang with us here and see how it goes--this is a lousy disease to try and manage without being able to talk to people who "get it". Like I said, I for one, would be interested in knowing what kind of community you live in and what access you have to a high-level up-to-date sleep specialist/MD for another opinion. Sleep medicine has exploded since you had your surgery.

Keep the faith--we're here to help, not to thrash around with what's already been done. I'm gonna send you a friend request, so watch your SG page! (Hey, you have no idea what a big treat it'll be for you being friends with me!! Just ask anyone on SG who's been listening to ME yak on here!!!) lol )

Susan McCord :-)



Judy said:

Yeah, well, given what you say you are experiencing due to the trach I know I'd be checking with a good sleep doctor and also a good local DME RRT who knows their various xPAPs and their capabilities (such an RRT is darn hard to find!). There's a LOT to be said for "putting a plug in it" and trying out a GOOD sleep center for advice and posssible PAP titration based on a good interview and discussion of your past history.

I'm a creature of comfort and firm believer in the most comfortable, easy way to do things.

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Permalink Reply by Michael F. O'Brien on September 15, 2009 at 10:33pm

My doctor asked me if I was committed. I told him, "Yes." It hasn't all been rosy for comfortable. My CPAP can be set to come on with little pressure and then build up.

Banyon said:

What sleepycarol said.

CPAP is not something to "try to get used to". It is something to commit to, something to persevere with, something to get educated about, something to work at for your health.

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Permalink Reply by Alyce G. Burriss on September 16, 2009 at 6:00pm

Haven't had a trach, but sleep apnea drives me nuts !!!! Isn't a ttrach drastic????

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Permalink Reply by 99 on December 17, 2009 at 7:41pm

sometimes with all the good advice given it can be overwhelming at times
sometimes i pit one situation against another in computers
lets say i want a motherboard i check what cpu is appropriate from the motherboard sitethen i cross check the cpu site and say what is an appropriate motherboad
do not take the vendors word that their product is best try and get as well as you can and when you hit brick wall is the time for a review of the sutuation
in the mean time keep yourself well armed with information ready for this review and review it honestly do not be bullied in choices you do not want
take your time

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Permalink Reply by Mike on December 17, 2009 at 7:43pm

saw that Bradford posted this as a comment on his page, but he's unlikely to get responses there, so i'm re-posting it here:

"hey all lately i havent been able to sleep, pain in my neck due to my trach is driving me nuts, any ideas...thanks in advance"

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Permalink Reply by Mack D Jones, MD, SAAN on December 17, 2009 at 9:44pm

Brad, You need to get with your ENT doc for an exam and find out what is causing the neck pain and have it fixed right away. I assume when you say neck pain, you are referring to your trachea and not somewhere else like the back of your neck or off to one side of your neck. Your trach tube should not be causing your pain and if it is, your ENT doc or Pulmonologist sleep doc should be able to correct it.

As you well know, it is not possible to answer your questions except in generalities. To get down to specifics, I would have to have you come to my office (assuming I wasn't retired) for a detailed history and physical exam including a possible bronchoscopy (assuming I was an ENT doc or a Pulmonologist) to see what the inside of your trachea looks like. Other tests might be needed depending on the findings.





Mike said:

saw that Bradford posted this as a comment on his page, but he's unlikely to get responses there, so i'm re-posting it here:

"hey all lately i havent been able to sleep, pain in my neck due to my trach is driving me nuts, any ideas...thanks in advance"

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Permalink Reply by bradford hanley on December 17, 2009 at 10:00pm

thanks for replying, this is a bit wierd but its not the trach that hurts its the back of my neck , trying to find a comfortable position to be in with a trach is hard at times, but lately i cannot find a position that the back of my head or my neck doesent hurt, like ive been in the same position for hours, but its only been a second or two, tylenol does nothing and ive been waking up all hours of the night, i try to sleep head elevated as well but nothing seems to work, thanks for your help

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Permalink Reply by sleepycarol on December 18, 2009 at 8:21am

Could your neck possibly be out? I know mine hurts like what you have described when my neck is out of whack and an adjustment makes a big difference.

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