My husband was on thickened fluids. The brand name is "Thicken UP!" It's a powder that you add to your liquids, the amount depends on the thickness of fluid you should be on -- nectar, honey or pudding. It thickens quickly and one is supposed to admit to every liquid that goes in the mouth. It is tasteless and colorless. The idea is thickened fluids help prevent aspiration -- think how water splashes all over the place when you spill it, whereas thickened fluids tend to stay together and have less movement. In swallowing, this means less lucid will escape and go into the trachea.

John was prescribed Prevacid to help with the acid reflux and it worked really well for him. You may want to talk to your doctors about that.

The literature advises against using ice and anything that may melt and change the consistency of the liquid. This includes jello, ice cream as well as ice. When you aspirate, do you cough the liquid up? People who have swallowing problems may suffer from silent aspiration (John had it too), which means when he aspirated, he did not react to it and did not know it had happened. So it is important to be cautious.

Have you done a barium swallow test? If not check with your treatment facility if there is a SLP or sometimes a nutritionist can do the test. Its very important that you know for certain you can swallow safely so you avoid having aspiration pneumonia. The professionals can also work with your to help you regain your swallowing ability. It takes time to get those unused muscles functioning correctly after being mostly inactive for so long.

Best wishes!

WZ -

Just read your post. Always nice to meet another "long term" survivor!

Curious - Have you had an ENT look at why your swallowing and speech has deteriorated (relatively) recently since you are so far out from your last treatment?

I agree that the liquid we can get down is ABSOLUTELY the only thing that provides any variety......but unfortunately, in my case its not enough to sustain on its own. Glad to hear that you can still manage some soft foods.

The PEG / pump are a pain to deal with, but it is the best way I'm aware of to consistently maintain control over caloric intake.

Good Luck with things and always keep your doctors notified of any changes.

gmcraft -

I did not react well to thickened foods. Even exceptionally small quantities resulted in severe choking. Same with thin liquids without ice. The surgeries and radiation have left a lot of scar tissue and damage to the top of my throat.

I do use Prevacid to fight the reflux, in combination with sleeping with my head and chest elevated. Seems to take care of most of the problems

I'm aware of the aspiration issues and your analogy of spilled water is very appropriate. The reason it does work for me is the extreme cold liquid in conjunction with the carbonation provides a "trigger" and the result is a rudimentary swallowing effort. Although it may not be 100% effective, I follow with a hard throat clearing cough.

Aspiration and pneumonia are very real issues that can cause serious problems to a compromised system. Subsequently, I try to be extra vigilant about it.

Thank you for your response

ChristineB

I've failed every item on the Barium swallow test. I tried the test at least twice with the same results. I tried a few of the items a third time after swallowing and speech therapy with a fluoroscope just to see what wasn't working during the initial "grab".

I'm trying a different approach now. PT with a therapist who specializes in head and neck soft tissue damage from radiation. The idea would be to loosen the tissue around the hyoid bone and then (hopefully) a better grab and swallow may result. Very painful. Also working on the jaw to loosen the trismus.

Yes, it is funny whom you will allow to see your feeding ordeal. Some folks I don't mind and others "no way".

Mine is a volume problem. I am supposed to take in five cans of 2cal a day for a total of 2250 calories and as much water as I can. I do get in three cans a day and usually three cups of water, (Christine would really scream at me for this low amount of water). Crazy how excited I am when I do four cans in one day. I do one cup at a time and then am so full I have to wait several hours before I go for another cup. I am trying to add to that a little more each feeding to get the volume higher. I have just received a case of Liquid Hope packages from Larry6905 on this site and plan to try it today. Anything to get off the canned liquid !

I tolerate the food commercials, driving past our old favorite restaurant stomping grounds, grocery stores and even get togethers with friends where food is one of the main attractions. But, what I find myself doing is searching recipes from any and everywhere. I write them out always planning to make them. I have more notebook recipe books now than you can imagine, LOL. Hubby says we are going to go broke buying reams of paper. I think I even am giving myself carpel tunnel of the left wrist with all this writing ! Oh well, it keeps me busy.

Through Amazon I subscribed to an app called Texture last week. For about $15.00 a month I can read any or all of the 187 magazines they offer. As well as back issues. Of course I chose all the recipe books first then Consumer Reports, Smithsonian, This Old House, History, and several more. Having fun with that even though my wrist is suffering.

I am amazed that you have the strength and drive to work every day. I eat and read and sleep a lot. I can not even imagine having young ones around, working, or even taking on all the house duties. My hubby takes care of just about everything (except laundry, he is clueless there). We have the grandkids here often and they sometimes spend the night. They are 3, 2, and 1. Wow, am I worn out when they leave, but so much fun to spend time with them. I just think how hard this would have been to go through when our three kids were young or even teenagers. Yes, the after effects of all we have been through sure is a battle.

I saw the ENT Doctor yesterday. He did the light/scope down the nose and mouth and said it looked very good except that my throat was still very swollen and raw but to keep doing what I have been doing. He did take a lot of wax out of both ears, oh my what a relief that was ! He said it was still lots of dead skin from the radiation.

I try to stay positive and I have read your comment "we have been given this path in life for a reason" several times, even wrote it down. I does give me strength and I thank you for that. Take care and looking forward to hearing from you.

Hi WZ! Thanks for your post. Sounds like you are working on the nutrition issues. Have you had a swallowing test done ? If I read that right, doctor says don't eat by mouth but you don't have a peg ? Please be careful doing this as I'm sure you know, aspiration is not a good thing.

Fourteen years out is a great record indeed but is there any reason they give you for experiencing the swallowing issues again this far out? Could it be inflammation ?

So you are working every day ? I do admire that ! Please stay in touch and let us know how you are doing !

Jo,

Wax in the ears! I thought I was the only one that had itchy ears. After recovering from the first series of radiation, my ear canals were constantly dry and itchy. (I know the doctors say not to put anything smaller than an elbow into your ear, but q-tips do the job for me!)

Good luck with the Liquid Hope feeds. Let me know how they work for you.

I think some of my issues are related to volume also. I seem to end up with a lot of nausea when I try three boxes at one feeding now.

One thing that I've found that helps is starting early in the morning and going back to sleep while the pump does its job. That way two or three boxes are in before I even really start my day. Then I read during the evening while another two or three boxes are put through the pump. Although, usually I stop about halfway through and take the dog for a walk or something else just to have a break. The break helps with the "pressure / nausea" (You now have your magazines and recipes to help pass the pump time.)

Glad your hear your good news from the ENT! Its always a relief when you have no new surprises to deal with.

I've re-read your paragraph about work and being busy with family a couple of times. I really believe that resuming my responsibilities at work and at home as soon as possible after treatments was a huge benefit to my overall recovery. Conversely, my kids ability to deal with and accept my illness is also directly linked to how quickly I was able to return to as much of a normal life as possible.

Stay strong and enjoy your grandchildren.....

Yep enough wax to donate to a museum LOL. Hate to get that stuff dug out but oh what a relief it is !

I am thinking about asking for a pump as I do total gravity eating. It sounds enticing to be asleep and eating at the same time. That would give me more time to read.....as if I needed that ! What I really need to do is get out of this chair and move around more often.

Still have not started the Liquid Hope yet. Kind of scary thinking of doing anything that would stop up this tube. Plus the fact I really cringe at the thought of throwing up. So now since it is 6 pm here, guess I will shoot for tomorrow. Funny how I have become quite the procrastinator now. My attitude lately is "whatever" or "it can wait till tomorrow".

I do not walk the dog, he is big and goes crazy pulling the leash when he sees any other animal outside. I could just see me being dragged down the block yelling all the way.

What type of work do you do and how many hours a week ? We do medical billing at home and have many practices we do the billing for. I say we but my hubby, son, and daughter in law do it all now. I just listen to their woes of dealing with the insurance companies. We have done this billing from home for over 20 years. Nice in that we work from home and pick our own times to work. Easy to take trips and vacations because we just take it with us. Hubby loves it because it gives him time to work in the yard (his favorite hobby).

We have 3 "kids" a daughter in Portland, who is an Amtrak train conductor. A son in Spokane, Wa who is an IT computer person for Aetna. And, a son here in town who works with us part time and for his Church the rest of his time. He is studying to become a preacher and loves going on mission trips to the orphanages in the Phillippines. They all three are very loving and caring but to me it seems like they try to distance themselves with what I am going through. I guess that is the defense mechanism cause Mom is just fine and will always be there.

You are fortunate to have your children involved in your healing process. It is nice to be able to sit and really talk. I sure don't know how people get through all these punches without family or friend support and comfort.

Enjoy that evening walk and take care !

Jo,

I would recommend the pump just for the reasons you've mentioned. Eat while you sleep. Less Hassle, Load the bags / prime it / and turn on. Really very easy. The pump I have is a EnteraLite Infinity. Approximately 6 x 4 x 3", (Small with battery or electric power source. Weighs about 2.5 lbs. In theory it can be carried around while the person is receiving the feed. Downside is the supply source, 1200ml bags and 3 feet of tube makes it a little obtrusive. That's why I sit / sleep during feeds.

Our dog is a mixed breed, Great Dane and Irish Wolfhound. We've been an adoptive rescue family for Great Danes for the last twenty years. He can pull pretty hard when he wants too, but he's fairly well trained.....most of the time! During my recovery I was off work for about seven months. Finn, (our dog), attached himself to me.....slept with me and wouldn't let me out of his sight. Wonderful companion during a rough time.

I'm a civil engineer. Have a MS from The University of Pittsburgh. Work for a large construction company specializing in Heavy Civil projects, (Toll Road construction /. reconstruction / Lock and Dam rehabilitation / Utility construction / Railroad / etc). Very busy, hard work, with lots of stress. I work a lot, but force myself to a maximum of 50 hours per week.

Between the job and kids the To Do List at the house is a distant third and grows longer each day.

It's busy but fulfilling.

I agree that family and a strong support system is essential to successfully getting through these issues. I also understand about family / friends keeping our health issues at a distance. (I don't think they are intentionally acting that way. Probably an internal emotional buffer.)