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Kristina1

Senior member
Joined
Jan 26, 2017
Messages
822
Reason
PALS
Diagnosis
03/2017
Country
US
State
MA
City
Grafton
Sorry for all the noob posts. Talk to me about my aspiration, how dangerous is it, and is there anything (like a medication) that could reduce how often it happens?

I aspirate on liquids constantly. Basically every time I drink anything, I aspirate at least once, usually more like 3x. Often it is a very tiny amount that only makes me cough a little, occasionally it is larger and makes me cough hard. I also aspirate on my own saliva, and occasionally on certain foods (rice, ground beef, etc).

I know there is a risk of pneumonia, but this has been going on and getting gradually worse for the past year and it's never led to that. Does that mean the risk is pretty low?

Mostly this is just really annoying to me. Is there a medication that reduces this problem? Or a strategy?

When I asked in another post about help with swallowing pills the eventual option of a feeding tube was brought up. So I know that is an option with this problem too, but prior to that step is there anything people do to address this less invasively?
 
The only thing I know of is the chin tuck method. The speech therapist at clinic said if you tuck your chin down to your chest before you swallow, it helps open the throat up properly and helps liquids go to the right place.
 
Another trick I learned besides tucking your chin, is to drink cold or hot fluids such as ice water or hot coffee or tea. My speech therapist told me this shocks the muscles in your mouth. Getting them ready to swallow much quicker.
Patrick
 
Have you tried thickening the liquids? The drug store usually has Thikit or something similar. It is kind of weird at first but works well.
Vincent
 
I agree with Vincent's suggestion or something that worked for me was buttermilk. I enjoy it so it worked well for me. I also enjoy full meals but I to have trouble with ground beef or rice or anything that is very small pieces that I can not move around with my tongue. Last night I had chicken strips and potatoe salad, no problem because the pieces are larger.
Al
 
Thank you all. I did try tucking my chin to swallow pills per someone's suggestion in my other post and I actually meant to come back and thank that person because it definitely did help. I did not think to try it with just regular drinking I will do that.

I did notice that I was able to swallow pulpy orange juice better and a few weeks ago when I realized this I switched to always using it to take pills. I'm guessing that is the thickened component you are describing. I drink a lot of water normally, and the thought of thickening water sounds pretty gross. I guess I can give it a try though.

Firefighter58- yes exactly, as long as I eat foods that don't have or break into small pieces I am good to go.
 
I found some help with aspiration that surprised me. I have a trilogy with a humidifier. Each night before bed I add 2 drops of a Doterra oil called Breathe in the humidifier. I have had no problems since I started doing this about 3 months ago. I think peppermint oil might work too.

Hugs,
Deb
 
All good suggestions you have had so far.

Please see a speech pathologist and do everything you can to prevent aspiration - pneumonia is not fun and it has a high probability of hastening the progression of your breathing muscles. So this is serious stuff.

I know this is really hard, but swallowing is now an activity that is going to need your full attention, rather than something you do without thinking. It is worth discussing early peg placement as you could take in most of your thin liquids that way, top up your calories and simply enjoy your favourite things by mouth.

Do you have a good strong cough?
 
Here are some thoughts and things that worked for me.

  1. This is nothing to mess around with. See a swallowing specialist ASAP. Mine has made a huge difference for me.
  2. Always tuck your chin when swallowing. This has really helped me.
  3. Hold liquid in your mouth for a second or so before swallowing.
  4. Space out your swallows. Don't do them back to back.
  5. Be aware of the texture of what your are eating. Some textures are worse than others.
  6. No room temperature liquids. Either hot or cold are fine
  7. Ice cream acts like a thin liquid. Be careful eating it.
  8. I find soft drinks are easier to swallow than water. They have a higher viscosity and the carbonation seems to help me. I don't like sodas (too sweet), but now drink them regularly.
  9. Make every swallow count. I was encouraged to stop drinking water, as every swallow should be used for something with calories.
  10. Talking during the days makes swallowing worse for me. I have to make my choices about that.
  11. No talking while eating and drinking. Focus on swallowing and leave conversation for later.
  12. Rinse your mouth with antiseptic mouth wash so that when you do aspirate you take down less bacteria.
  13. Make sure someone is around when you are eating (I violate this regularly;)) and that they know how to perform the Heimlich maneuver.
  14. Seek medical help at the first sign of respiratory issues. You want to catch aspiration pneumonia early. Don't wait a week to see if it clears up!

Like you, I find orange juice with some pulp in it easier to swallow. It does not seem like it should be, but it really is.

If you decide you eventually want a feeding tube, now is the time to get serious about it. Do it before it is too late. Learn the difference between a PEG and a PRG (called RIG in other countries). Figure out which one is appropriate for you.

Good luck, and feel to ask lots of questions!

Steve
 
Do you have a good strong cough?

I'm not sure. When I fake-cough it seems normal to me. But I have noticed that when I first started having problems with aspiration (about a year ago) it would always produce a massive coughing fit. But back then it was only happening once or twice per day. Now it happens all day countless times, and usually only produces a short, small cough reaction. I figured either my body is getting used to it and not responding as hard, or else maybe I am aspirating smaller volumes just a lot more frequently and maybe that's why it doesn't make me cough as hard anymore.

If the coughing question has to do with breathing, I do have a breathing test scheduled next week to check that. I sometimes run out of breath half way through a sentence (when speaking), but this only happens once or twice per day, and more often at the end of the day when I'm tired.
 
Thanks Steve, that is really helpful, and what a great idea about the antiseptic mouthwash!

I have no idea what the differences are between the feeding tubes you mentioned. I will ask the doctor about all this at my appointment.
 
A PEG is placed using an endoscope under sedation.

A PRG (or RIG) is radiologically guided, so uses much lighter, or perhaps no, sedation.

I will be getting a PRG when the time comes. I have already picked out the doctor to do the procedure, but have not yet scheduled it. I keep saying I am going to schedule it, but just have not done so yet. Call me a procrastinator.

If you are having trouble swallowing, then you may not be getting enough calories. I lost 70 pounds while being diagnosed. Upon diagnosis, the doctors told me not to lose any more weight. I dropped another 5 pounds, but have gained 10 from there.

Here are some of the techniques I use to get calories and make things easier to swallow.

A dietician recommended I swallow tablespoons of olive oil. I like olive oil, but yuck. Instead, I make homemade mayonnaise, using canola oil. It is high in calories. I use it to coat just about anything. I can use it to make a dill sauce to eat with smoked or grilled salmon. I use it in spreads. I liberally slather it on pieces of bread I eat. I use it to make Thousand Island dressing. When I slather enough of it on a salad, I can get just about anything to go down. It makes an amazing difference. And, whereas eating a tablespoon of oil is gross (to me), eating a tablespoon of my mayonnaise is a delight.

I really like rice, but those little rice grains are hard to swallow. So, when I make rice, I add 2 to 4 tablespoons of butter when cooking 1 cup of uncooked rice in an appropriate amount of liquid. Once those rice grains have that much butter on them, they just slide right down.

Ice cream! Lots of ice cream. Ice cream with chocolate syrup. Yum. Need I say more? As I mentioned earlier, ice cream sometimes acts like a thin liquid. I have to be careful eating ice cream, but eat it regularly.

I like my coffee black. But, it is thin enough to present problems. Putting a lot of heavy cream in my coffee really helps.

Speaking of heavy cream, we use it in everything. Milk is rarely used when preparing meals for me. We just about always use heavy cream instead. Scrambled eggs made with heavy cream are pretty tasty!

I find wine is easier to swallow than many things. I don't drink much alcohol, but it is nice to be able to have a high-calorie glass of wine. Champagne goes down even better than wine. Bourbon mixed with coke (to which I turned up my nose for 30 years) goes down equally well.

For me, lubricating the food really helps swallowing. And, fortunately, there are some very tasty ways to lubricate food!

Steve
 
But I have noticed that when I first started having problems with aspiration (about a year ago) it would always produce a massive coughing fit. But back then it was only happening once or twice per day. Now it happens all day countless times, and usually only produces a short, small cough reaction. I figured either my body is getting used to it and not responding as hard, or else maybe I am aspirating smaller volumes just a lot more frequently and maybe that's why it doesn't make me cough as hard anymore.

Your diminishing cough means that your muscle responses to the cough reflex are weakening. It is possible to get to the point of being a silent aspirator. You swallow without coughing because the reflex cough is gone. Food and fluids end up in your lungs and any coughing is after you eat when your lungs object to your food landing there. Pneumonia is inevitable. So, it is time for swallow study and educating yourself about getting a feeding tube so you can make a knowledgeable decision about the pros and cons.
 
Your diminishing cough means that your muscle responses to the cough reflex are weakening. It is possible to get to the point of being a silent aspirator. You swallow without coughing because the reflex cough is gone. Food and fluids end up in your lungs and any coughing is after you eat when your lungs object to your food landing there. Pneumonia is inevitable. So, it is time for swallow study and educating yourself about getting a feeding tube so you can make a knowledgeable decision about the pros and cons.

Okay, I did not realize that. That does sound concerning the way you've explained it, and I will make sure to discuss it with the doctor at my upcoming appointment. Thanks for letting me know.
 
I have had serious bouts with pneumonia twice before being diagnosed and I have asthma as well. Basically, I have crappyet lungs. When I aspirate I tend to spasm and my airway closes for what seems to be a minute but is likely only seconds, but it freaks people out as when I try to breathe I croak like a dying frog and come close to passing out. (Which I have from asthma attacks before.) So a couple things that help.

1. I take guaifenesin helps loosen phlegm and mucus. This can get stuck in your airway.
2. Cough assist... I have mastered this machine and use it regularly to suck out the stuff that builds up in my lungs
3. I take all medications with applesauce. They are much easier to swallow.
4. I drink everything with a straw
5. I avoid mucus producing foods.. dairy, wheat, corn are problematic for me
6. I avoid acidic drinks, which is a bummer as we have a fabulous wine collection
7. I am very cautious with spicy and acidic foods. Black pepper can sometimes trigger me to aspirated.
8. I make smoothies with kale and pineapple or berries but I also add fish oil to boost calories and thicken a bit more.. this helps.
9. I never sleep on my back to avoid aspirating saliva at night.
10. I take boswellia daily which has been the single most beneficial supplement in that it has nearly eliminated all my allergy symptoms and greatly reduced my asthma.
 
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