Aspiration after 5 yrs

jackflash22

hi all,

ive had a set back, after a 5 yr all clear I've started aspirating. Ive had double pneumonia and chest infections and yesterday had a barium swallow test which shows 95% of the swallow goes the correct way but a small droplet remains then runs down into my lungs. It puzzling me why with each swallow this small tear shape droplet  doesn't go down with the rest of it. I also sometimes have liquid run out of my nose. I'm so disappointed that this is happening. I started chest infections in Nov 2018 and in March 2019 i got double pneumonia. Then getting chest infections again. I was sent to a lung specialist who said I was COPD. He said I should get a swallow test as the signs were there that I was aspirating. is there any  treatment for this without having to go back on a feeding tube. Will I also be COPD forever. I'm fit, I walk 4 to 8 k daily. Most days go up stairs and hills fairly easy. I do have down days when I can hardly raise my body off the chair which disappears after 24 hr rest. Then I'm full of energy again. I'm still getting side affects from radiotherapy on head and neck cancer. The side of the surgery has stiffened and I can't turn my head right. I get pins and needles up the right side. My ear hurts if I try to open my mouth wider than it lets me (trismus). I really thought just after my all clear  things would go on improving but they are getting worse. Anyone else find these side effects after 5 yrs. 

SuzJ

Exercises

Curious, did either of you do the serious speech therapy (swallowing) therapy?

I found that really helpful, I do sometimes cough and splutter a bit, but I'm determined not to aspirate and get an infection!

Logan51

SuzJ

Nope. All I do is regular/frequent sippings of flavored water. Holding my tongue against roof of mouth and swallowing from both sides, for reason unbeknownst to me, works best. Do have a "regular" Dr. visit next Tuesday. Need his referral to see a new ENT, which I might do. I don't know if it's liquid in the lungs, or what, but I've gotten short of breath in the last couple weeks- can tell when mowing lawn. Also possible some plant is doing this, like poison ivy. Earlier mowings- no problem. Now these last two times- taken quite an effort. I've never, to my knowledge, had an infection.

caregiver wife

Swallowing exercies

I'm with SuzJ.  Husband did swallowing exercises for over a year.  Were not difficult and only took a few minutes a day.  He got them from a speech therapist.  Unfortunately, his throat muscles all the way down were damaged beyond healing by radiation.  The exercises did help him to be able to swallow saliva and tiny sips of liquid without choking.

Crystal

jackflash22

swallowing

my speech therapist rang me. She said by the result of my swallowing test one side muscle has got lazy which can happen after a number of years and it's not getting rid of the last drop of liquid. It showed exactly the same place each swallow, I have scar tissue which closed my throat for 18 months until the surgeons used a method of going through the scar tissue from each end. It was successful and after several dilation my throat opened to 16mm. I can't swallow solids but have for about 4 years been able to swallow liquid normally without much bother. The trouble started in November. She said quite often throat cancers can get leaks because scar tissue never gets softer it stiffens. I'm going to start the swallowing excersise I did originally hoping it will help. I've been given breathing excersise to make me cough after a few swallows. Sit and relax upright and take 2 soft breaths in. Then breath in and give two strong HUFFS like I was breathing on glass to clean it. Really strong huffs twice After repeating this usually I start a deep throaty cough which brings liquid and mucus from my lungs. So long as I do this to stop the liquid from remaining in my lungs I shouldn't keep getting chest infections. 

jackflash22

Logan51 said:

jf22

5 years! Now I feel lucky. I didn't notice any aspiration until going into my 9th year. Started with drinking my 3 morning Ensures, which now takes quite awhile to get done. Would cough quite a few seconds after I swallowed and the stuff coughed-up was/is my strawberry favorite. Has grown progressively worse, and am doing what Matt prescribes in regular sip-swallowing exercises. I'm on Medicaid, now, until next Jan. 1st, and my ENT does not accept- only one local does- so I have not had any tests done. Tired most of the time, and mowing yard has become a challenge.

Cannot answer your question, jf. Know in years past there was talk about "strictures"(sp) or dilations to help open esophagus. If the epiglottis is involved, though, which is what I fear about myself- that is not good news. I figure/hoping scar tissue is the problem from Rad damage, rather than a new growth of C. Still, the epiglottis flap should be sealing the top of the windpipe...Do know of others who were permanently put back on PEGs, for one reason or another. Surgeon I had told me about a woman Patient, but did not tell me what her condition was. Only adjustments I've made are smaller swallowings/sippings of everything, and the regular Matt Therapy of sipping often.

Short of breath

have you had a throat dilation I get them every 3 months. It really does help with swallowing. It sounds like you may have liquid in your lungs your not getting enough oxygen and that why your tired. Also dehydration makes you tired. It's a catch 22 situation you don't feel like you want to drink often cos the liquid leaks into your lungs and if you don't drink you dehydrate. See if you can get a video X-ray of you swallowing. They showed me after they finished my video, I could see the liquid go down to my stomach but one little teardrop remained same place every time the I saw it branch off as it went into my lungs, after you swallow do you feel a tickle that makes you cough and sometimes your voice changes sort of soft and gurgly. 

wbcgaruss

jackflash22 said:

swallowing

my speech therapist rang me. She said by the result of my swallowing test one side muscle has got lazy which can happen after a number of years and it's not getting rid of the last drop of liquid. It showed exactly the same place each swallow, I have scar tissue which closed my throat for 18 months until the surgeons used a method of going through the scar tissue from each end. It was successful and after several dilation my throat opened to 16mm. I can't swallow solids but have for about 4 years been able to swallow liquid normally without much bother. The trouble started in November. She said quite often throat cancers can get leaks because scar tissue never gets softer it stiffens. I'm going to start the swallowing excersise I did originally hoping it will help. I've been given breathing excersise to make me cough after a few swallows. Sit and relax upright and take 2 soft breaths in. Then breath in and give two strong HUFFS like I was breathing on glass to clean it. Really strong huffs twice After repeating this usually I start a deep throaty cough which brings liquid and mucus from my lungs. So long as I do this to stop the liquid from remaining in my lungs I shouldn't keep getting chest infections. 

jackflash22 I Had

My throat cancer at the same time you had yours roughly same time frame 2013. I started treatment in Jan. Was just a reader for years and just recently joined after getting second cancer. Just wanted to say my heart goes out to ya. You have been through some very difficult times yet you look to the positive. Sorry, you are having this new swallowing problem and hope you get it worked out. Hang in there you were and are an inspiration to me-God Bless

Logan51

Getting tested

Visit with my General Practitioner on Tues. might have been one I'll remember for as long as I live.

First, he noticed I have lost weight- from 134 to around 128. Can't get into particulars, but have a lot of stress going on in my life. Worrying about the shortness of breath when mowing yard is one of them, and the aspiration, but there's two others that are equally big. Did put me on "emotional" meds for the anxiety. And, ordered a swallowing test to be done soon. Follow-up meet with him is on 7/2.

Thing that gets to me: eat a can of Roadhouse Chili and I have no trouble with swallowing. Or a sandwich. Bowl of cereal w/milk, a little. But when I go and sip water, or drink my 3 Ensures for breakfast- coughing up the colored drink has been a regular thing for quite some time. ANYBODY help me on why this is?

As for remembering this Dr. appointment...Did tell him the "dark thoughts" of when I was between diagnosis and tx have krept back into my mind, enlightening him about said being the worst of times for H&N C Patients who, like I did before I was on the forum and made the mistake of doing the Google images thing...Yeah...Understand that a lot has changed in my life over the past 2 months: have moved to a long-nosed Condo community, but into a very small unit that has put me under the microscope of the long noses. House I moved from was built in 1896 and is inhabitable with risk, due to dry rot on key boards and foundation and basement floor issues. Big whig lady at City Hall refused my offer to give the house & garage (7200 sq. ft.) to the city, and said it might take $40-K to demolish house, due to asbestos w/slate siding and on basement duct work. Hence: a lot of the stress can be catagorized as "financial ruin" leading to destitution...And I just spent $740 getting the tops on the front 4 lower teeth rebuilt...Why did I bother, I now ask myself...And  I think of having been abandoned by the Lord, but then look at the picture of the footsteps in the sand, and how the Lord might be carrying me thru this difficult time in my life. Now, 10 years and a week since my last Rad. session, with many of those years being pretty good, so I reckon I got no complaints, and sure as heck don't want no pushover pity party.

So, if anyone knows why I can swallow solids without issue, but not liquids- please let me know.

 

traceyd1

Logan51 said:

Getting tested

Visit with my General Practitioner on Tues. might have been one I'll remember for as long as I live.

First, he noticed I have lost weight- from 134 to around 128. Can't get into particulars, but have a lot of stress going on in my life. Worrying about the shortness of breath when mowing yard is one of them, and the aspiration, but there's two others that are equally big. Did put me on "emotional" meds for the anxiety. And, ordered a swallowing test to be done soon. Follow-up meet with him is on 7/2.

Thing that gets to me: eat a can of Roadhouse Chili and I have no trouble with swallowing. Or a sandwich. Bowl of cereal w/milk, a little. But when I go and sip water, or drink my 3 Ensures for breakfast- coughing up the colored drink has been a regular thing for quite some time. ANYBODY help me on why this is?

As for remembering this Dr. appointment...Did tell him the "dark thoughts" of when I was between diagnosis and tx have krept back into my mind, enlightening him about said being the worst of times for H&N C Patients who, like I did before I was on the forum and made the mistake of doing the Google images thing...Yeah...Understand that a lot has changed in my life over the past 2 months: have moved to a long-nosed Condo community, but into a very small unit that has put me under the microscope of the long noses. House I moved from was built in 1896 and is inhabitable with risk, due to dry rot on key boards and foundation and basement floor issues. Big whig lady at City Hall refused my offer to give the house & garage (7200 sq. ft.) to the city, and said it might take $40-K to demolish house, due to asbestos w/slate siding and on basement duct work. Hence: a lot of the stress can be catagorized as "financial ruin" leading to destitution...And I just spent $740 getting the tops on the front 4 lower teeth rebuilt...Why did I bother, I now ask myself...And  I think of having been abandoned by the Lord, but then look at the picture of the footsteps in the sand, and how the Lord might be carrying me thru this difficult time in my life. Now, 10 years and a week since my last Rad. session, with many of those years being pretty good, so I reckon I got no complaints, and sure as heck don't want no pushover pity party.

So, if anyone knows why I can swallow solids without issue, but not liquids- please let me know.

 

aspirating water

I am a speech therapist whose husband had jaw cancer.  Thin liquids such as coffee, water, and tea are the hardest liquids to manage.  This is why your therapist may put you on  thickened liquids.  Additionally, thin liquids are often silently aspirated, so you may not even know you're aspirating.  Sometimes soups and cereal are difficult to manage because you're basically eating two consistencies (solid and liquid) at the same time.   It's really important that head and neck cancer patients who develop pneumonias or upper respiratory infections request a swallow study to ensure they're not aspirating.

Logan51

traceyd1 said:

aspirating water

I am a speech therapist whose husband had jaw cancer.  Thin liquids such as coffee, water, and tea are the hardest liquids to manage.  This is why your therapist may put you on  thickened liquids.  Additionally, thin liquids are often silently aspirated, so you may not even know you're aspirating.  Sometimes soups and cereal are difficult to manage because you're basically eating two consistencies (solid and liquid) at the same time.   It's really important that head and neck cancer patients who develop pneumonias or upper respiratory infections request a swallow study to ensure they're not aspirating.

Gracias

Thank you, traceyd1. The Ensures were what first really alerted me with bronchial coughs showing the flavored colors, but had already noticed with my drinking of flavored water. Strangest was the Roadhouse Chili soup- no problem that I noticed. Worst part of a bowl of cereal is when the cereal is gone and only milk is left. Little sips, but still cough. Had hoped the Hospital would have called today to set up appointment, but did not. May private message you, since you are a speech therapist, as I am on Medicaid and do not expect much help being available- if that's okay with you.

Thank You.

Logan51

jf22

5 years! Now I feel lucky. I didn't notice any aspiration until going into my 9th year. Started with drinking my 3 morning Ensures, which now takes quite awhile to get done. Would cough quite a few seconds after I swallowed and the stuff coughed-up was/is my strawberry favorite. Has grown progressively worse, and am doing what Matt prescribes in regular sip-swallowing exercises. I'm on Medicaid, now, until next Jan. 1st, and my ENT does not accept- only one local does- so I have not had any tests done. Tired most of the time, and mowing yard has become a challenge.

Cannot answer your question, jf. Know in years past there was talk about "strictures"(sp) or dilations to help open esophagus. If the epiglottis is involved, though, which is what I fear about myself- that is not good news. I figure/hoping scar tissue is the problem from Rad damage, rather than a new growth of C. Still, the epiglottis flap should be sealing the top of the windpipe...Do know of others who were permanently put back on PEGs, for one reason or another. Surgeon I had told me about a woman Patient, but did not tell me what her condition was. Only adjustments I've made are smaller swallowings/sippings of everything, and the regular Matt Therapy of sipping often.

jackflash22

wbcgaruss said:

jackflash22 I Had

My throat cancer at the same time you had yours roughly same time frame 2013. I started treatment in Jan. Was just a reader for years and just recently joined after getting second cancer. Just wanted to say my heart goes out to ya. You have been through some very difficult times yet you look to the positive. Sorry, you are having this new swallowing problem and hope you get it worked out. Hang in there you were and are an inspiration to me-God Bless

Swallowing

saw my ENT specialist yesterday. He said they've looked at my swallowing tests and in every position and every thickness of liquid I'm still leaking the last bit into my lungs. They given me the choice of going on as I am and risk chest infection and possible pneumonia or going back on the peg with just occasional sips of liquid. I've chosen to wait and see. They said because I'm active I probably get the liquid to disperse quickly, the lungs will eventually absorb the liquid but if there's a germ or anything in it I will get chest infections again. I have an emergency pack of antibiotics and bottles of thinning mucus medication. I have another appt in 3 months. If I get a chest infection by that time I will go on the peg again. I'm not overly worried aabout it ..what will be, will be. If the peg makes it safer to feed its no great deal. I've been there before, I may go for a mickie peg it's flatter to your stomach. Anyone using  one..what's their experiences with a mickie. 

jackflash22

Logan51 said:

Getting tested

Visit with my General Practitioner on Tues. might have been one I'll remember for as long as I live.

First, he noticed I have lost weight- from 134 to around 128. Can't get into particulars, but have a lot of stress going on in my life. Worrying about the shortness of breath when mowing yard is one of them, and the aspiration, but there's two others that are equally big. Did put me on "emotional" meds for the anxiety. And, ordered a swallowing test to be done soon. Follow-up meet with him is on 7/2.

Thing that gets to me: eat a can of Roadhouse Chili and I have no trouble with swallowing. Or a sandwich. Bowl of cereal w/milk, a little. But when I go and sip water, or drink my 3 Ensures for breakfast- coughing up the colored drink has been a regular thing for quite some time. ANYBODY help me on why this is?

As for remembering this Dr. appointment...Did tell him the "dark thoughts" of when I was between diagnosis and tx have krept back into my mind, enlightening him about said being the worst of times for H&N C Patients who, like I did before I was on the forum and made the mistake of doing the Google images thing...Yeah...Understand that a lot has changed in my life over the past 2 months: have moved to a long-nosed Condo community, but into a very small unit that has put me under the microscope of the long noses. House I moved from was built in 1896 and is inhabitable with risk, due to dry rot on key boards and foundation and basement floor issues. Big whig lady at City Hall refused my offer to give the house & garage (7200 sq. ft.) to the city, and said it might take $40-K to demolish house, due to asbestos w/slate siding and on basement duct work. Hence: a lot of the stress can be catagorized as "financial ruin" leading to destitution...And I just spent $740 getting the tops on the front 4 lower teeth rebuilt...Why did I bother, I now ask myself...And  I think of having been abandoned by the Lord, but then look at the picture of the footsteps in the sand, and how the Lord might be carrying me thru this difficult time in my life. Now, 10 years and a week since my last Rad. session, with many of those years being pretty good, so I reckon I got no complaints, and sure as heck don't want no pushover pity party.

So, if anyone knows why I can swallow solids without issue, but not liquids- please let me know.

 

Liquids

Dave,...the way it was explained to me, the thicker the liquid the easier it is too swallow. There's no 'grip' swallowing water it rushes down. Theres a gel thickener for water but it's horrid. Gloopy texture that I hate. If I have to drink water it has to be sweet and tepid ..I can't swallow anything cold, it closes my throat if it's ice water. Most of my meals are a thick milkshake texture. i throw anything in my blender so long as it's sweet. Since radiotherapy my taste changed from liking savoury best to the sweeter the better. Dieticians at the hospital gave up on me...Now they says if I stay healthy and don't lose weight they'll leave me to my own devices. I have great energy. Stay about the same weight 8st 2lb if I start losing weight I boost my drinks with complan...a formula. Don't despair. After your tests if they find a leak it will explain why you are short of breath and maybe tired. Not enough oxygen in your lungs. I'm a shallow breather and do go dizzy at times. I carry around pure glucose tablets they boost me back up. 

Logan51

jackflash22 said:

Liquids

Dave,...the way it was explained to me, the thicker the liquid the easier it is too swallow. There's no 'grip' swallowing water it rushes down. Theres a gel thickener for water but it's horrid. Gloopy texture that I hate. If I have to drink water it has to be sweet and tepid ..I can't swallow anything cold, it closes my throat if it's ice water. Most of my meals are a thick milkshake texture. i throw anything in my blender so long as it's sweet. Since radiotherapy my taste changed from liking savoury best to the sweeter the better. Dieticians at the hospital gave up on me...Now they says if I stay healthy and don't lose weight they'll leave me to my own devices. I have great energy. Stay about the same weight 8st 2lb if I start losing weight I boost my drinks with complan...a formula. Don't despair. After your tests if they find a leak it will explain why you are short of breath and maybe tired. Not enough oxygen in your lungs. I'm a shallow breather and do go dizzy at times. I carry around pure glucose tablets they boost me back up. 

Thank you

Go in for my test tomorrow AM. Am losing weight, too, unless my scale went haywire. Freaked me out today when I stepped on it- 3 lbs. less than the day before! Have been eating Reese's Peanut Butter cups too...And yes, I do get light headed, so to speak. Got me to thinking C might have come back on me. Only thing that's changed is my suffering some 7 gnap bites over the past couple weeks, including 2 yesterday. Will let you know how the test goes.

Logan51

Logan51 said:

Thank you

Go in for my test tomorrow AM. Am losing weight, too, unless my scale went haywire. Freaked me out today when I stepped on it- 3 lbs. less than the day before! Have been eating Reese's Peanut Butter cups too...And yes, I do get light headed, so to speak. Got me to thinking C might have come back on me. Only thing that's changed is my suffering some 7 gnap bites over the past couple weeks, including 2 yesterday. Will let you know how the test goes.

Aspiration test done- not good

Well, they gave me three liquids with varying thickness to swallow, and the end result= Dr.s advised me not to eat or drink anything! As is, with my mind racing just a bit over the speed limit, waiting for my Primary to contact me. Dr.s say that as long as this has been going on with me- they don't know how I don't have pneumonia. Deep broncial coughs many minutes after the test- color of the liquid they gave me.

Out goes the diet of 3 Ensure for breakfast. Iffy about the bowl of cereal for dinner. Gonna stick with the sandwich for supper. Thing that gets to me- my "regularity" is great, so food is getting to and thru my digestive system. So it has to be the solid food is making it to my stomach. And Dr..s said the lungs can handle some water (gets absorbed). 

So, jf22, it all makes the sense we both figured about the energy level. And, yes, I feel feverish from time to time. Thing I noticed long ago= get hot flashes when I cough. 

Anyway...here we go again...

Found I can swallow very solid food, like pizza and toaster pastries you put in microwave, without a problem!!! SO, that was a positive revelation, and might not be as bad as I thought. Figure I'm stuck in the same bad place we all experience- between diagnosis of problem and having something actually done/finding out what the problem is.