Secretions - what worked for you?

The PEG feed over night is not a big problem, I also used it for the medications I had to take with my chemo as I wouldn't of been able to take orally, I also used to put those horrid drinks through it just to hold my weight as high as I could I still went down to around 10 stone, the worst thing from my point of view was the daily maintenance even though I had nothing else to do. I can't see what people have against it as others have been reluctant to use it, it is not a failure to use it.

As for the secretions my way of dealing with it was to remove it and not try to swallow it as it almost never went down, good luck with it all it is hard and slow.

Hi Nat, sorry to hear your hubby is having a tough time. The secretions are hard to deal with and very frustrating. Unfortunately I don’t think there is any quick way to deal with them. I used a nebuliser which the hospital ga e me to keep at home. I used this  a few times a day. It’s not a quick or easy fix but it does help. I also just spat secretions out as it was too hard to swallow them. I can’t answer your food question as I was on my peg from week two and still am. I use the overnight feed and would strongly recommend it - it was a real life saver for me as I lost so much weight in week one.  I could never take  the ensures down my peg as it was just to much in one go and always made me sick but the overnight feed was fine.  You should try and convince him to use the overnight feds for a bit to help. They start you off at a low rate and then increase it gradually to make sure you tolerate it. For me it was much easier than those awful drinks. 

Hope things improve for him soon 

Gill

Hi my husband has a small patch that he changes every three days to help dry up the secreations. It's a fine balancing act and he still has to spit out the sticky stringy type phlegm. But the feelin of drowning at night and the drooling has eased. He uses a nebuliser and also a good old fashioned steam towel over a bowl of hot water. Scopoderm is the name of the patch.  He is entirely dependent on his rig and tries to do two bottles of fortisip compact at a time he needs to sit upright for a hour or so afterwards. He tried more frequently but felt this was just too time consuming. 

hope you find something that works 

Hi there,

Over the years, one response that has continually been given to the problem of too much sticky phlegm is to make sure that the patient is properly hydrated.  The more liquid they can take in, the runnier (and more easily removed) the phlegm will be.  It doesn't have to be a whole glass full of water at a time; constant sipping through the day will achieve the same result, and will be much easier to manage.

You are in a difficult position with your husband and the amount of nutrition he is taking in, and I can appreciate that it is so hard for you to watch from the outside and not be able to do anything much to influence his choices and behaviour.  He may not be able to articulate exactly what it is that is stopping him from making decisions that, from everyone else's perspectives, are the only logical choice.  However, as a patient you tend to develop a kind of tunnel vision, and can only focus on what is happening to you now, in the moment.  If his brain has told him that "liquid food in" is linked to "retching", then offering him more "liquid food in" is going to result in a resounding rejection. 

Even if he is warned that his behaviour might result in bad consequences like organ failure, that is still only a possibility, not a certainty, and so will be rejected as less important than the problem that he is trying to manage right now.

The only argument I can see that may help him to go for more of the liquid food is that of hydration.  By denying himself the correct amount of liquids, he is causing dehydration and making the secretions worse for himself.

As to other foods when you can't taste anything, at this point in time he has to realise that food is fuel.  Soups, smoothies, scrambled eggs with cream cheese melted in, rice pudding - all this kind of thing will keep him swallowing, get some calories in, and change the dynamic with the secretions.  It doesn't matter that he can't taste it, he just has to push it down.

Good luck to you both, and keep us posted,

Best wishes,

Josie

Also using the PEG can help with hydration as you flush it before and after use, I think I used to put 50ml of water before and after from memory, this adds up if you put those horrid drinks and your medication through as well.