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RuthAO Asked March 2018

Dad with dysphagia has fluid in lungs. What are likely findings and next steps?

My Dad is 99 years old, with late stage Alzheimer’s. His progression has been very slow and gradual over at least 10-12 years. He has dysphagia, had the swallow test, has had speech therapy to work the swallowing muscles, and is on a mechanical soft diet. He recently had pneumonia (2 months ago) and was treated with antibiotic and albuterol by nebulizer. He lives in an ALF in Kansas; I’m in Oregon. I visited him in late February and was concerned to hear his loose, rattly cough. He’s never been a smoker and had never had this before the pneumonia. He continues to get the albuterol by nebulizer twice daily, I guess to keep the fluid loose so he can cough it up. I took him to his doctor who listened to his lungs, ordered another chest x-ray (and yes, it showed considerable fluid in his lower right lung), and gave him a different antibiotic in case he had a secondary infection. He also referred him to a pulmonologist. I’m wondering if I should travel there for his appointment with the pulmonologist in late April. What are the likely findings and next steps? I don’t want to pursue anything invasive or disruptive at his age. certainly not anything requiring anesthesia or hospitalization. Is this the beginning of the end? He doesn’t seem at all like a dying man. He is otherwise quite healthy. He walks with a walker, although he is very weak and wobbly. He enjoys eating, although he often forgets he has just eaten. He says he feels fine, and he has no fever or other outward signs of infection. He is alert, good-natured, and cracks jokes with the staff. He easily recognizes his family members. But this cough. Is this just going to be the state of things for the time being, until something gets worse and we deal with that? Even if it’s possible to clear the fluid out of his lungs, if he is aspirating food or liquid, won’t it just come back? Should I go to Kansas?

Lelystad Apr 2018
Hi, in case you are interested there is a free online course about dysphagia starting this month (April). Offered by the FutureLearn MOOC website, the tile is "Dysphagia: Swallowing Difficulties and Medicines".

talkey Apr 2018
Dad's situation was similar -- and we canceled the pulmonology appointment, because really there wasn't anything non-invasive they could do. Dad had PD, so there were many other issues to deal with, but he chose to enjoy his food right up until he went into hospice (when he just didn't really eat much at all).

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RuthAO Apr 2018
Thank you all for your helpful insights. Here's the current state of things. First, I spoke with my sister, who then planned to travel to be with my parents and take Dad to his appointment with the pulmonologist. So that solved that dilemma for me. Since then, I've been in contact with Dad's PCP's nurse and an RN at his ALF. At Dad's recent checkup a couple of days ago, he was found to be significantly improved. He still has some of the looose, wet cough and is continuing to receive albuterol twice daily by nebulizer. He still feels fine. His doctor believes (and the nurses said the same thing) that he is aspirating some saliva and maybe occasional food or liquids, and that this is probably going to continue for the foreseeable future. It would do little good to try to remove any fluid in his airways, as it would just come back. He is not otherwise ill and apparently has no infection. So the plan now is to cancel the pulmonologist appointment. If something changes for the worse, we can always go there to see if some intervention needs to be done. One thing I keep telling myself is, he's 99 years old, and what benefit is there to put him through more appointments and procedures that won't cure anything? As for your comments about CPR and tube feeding, that's already decided in his advance directives. He wants none of that.

GardenArtist Mar 2018
Agree on attending the visit with the pulmonologist, who can explain the fluid in the lungs and what options are available.

Your father isn't on the most complex dysphagia diet, which would be all pureed food and thickened liquids. So he still has the benefit of not having all mushy foods, which can be a real turn-off for eating.

The pulmonologist can offer guidance on what the next steps would be, as well as the alternatives. It's hard for someone like the posters here who haven't seen the lung x-rays and done an exam to be specific about those options.

You might have to make some decisions for future treatment, especially if you don't want hospitalization. You might also consider whether or not you would in fact want or not want that if your father develops aspiration pneumonia. You also might ask for a consult with the speech pathologist to get advice on how to handle coughing and especially choking. Tips like chin tucking when swallowing, swishing and spitting might be offered.

My father has dysphagia, more advanced than your father's, and was advised to use those techniques. The issue may also be discussed with you and your father about the possibility/likelihood of aspiration and the consequences. It may also be explained that eventual options might be a PEG tube for non oral feeding, and that's a big decision to consider as it means eating by mouth would not be an option any longer.

We're at that point, for the second time. My father's decided he doesn't want a PEG tube and feeding every 4 hours as I had to do. It might also be explained that at more advanced ages, it's just as important to focus on the qualify of life, which includes enjoyment of food, recognizing that aspiration may already be occurring. The decision then would be to recognize the risk and enjoy the rest of his life, or get a PEG tube.

I want to warn you of what we've just gone through. With 4 different infections, the aspiration and choking was compromised by a thrush infection with interfered with coughing. It was impossible to cough up the food and cyanosis occurred. You might want to ask about that, and what the options are if it occurred in your father's ALF, specifically, whether or not you want want to be rushed to the ER for treatment. Gasping for breath is frightening.

And congratulations to your father for making it to 99!

jeannegibbs Mar 2018
Ruth, I think I would go and attend the pulmonologist meeting. If this is the beginning of the end, seeing your dad while he is still alert and good-natured will be very meaningful.

Sunnygirl1 Mar 2018
I haven't encountered this type of situation. I do feel for you, though. I am sending you a PM with a link that has some information. I hope it might help a little.

BarbBrooklyn Mar 2018
So, my mom had this. I think it's what is called a pleural effusion. You should check with his docs if that's what they are seeing on the xray.

Mom had her lung tapped once, which reduced the effusion. It was not a hard procedure and it gave her a couple of months of easier breathing. The second time they did this was post pneumonia and it was pretty disastrous. Mom had been sent to the Er with shortness of breath. They tapped her lung, which somehow allowed some previously dormant bacteria to bloom, leading to septic shock. She was on IV antibiotics and a BIPAP machine for several days.

After being in the hospital for about a week, she was discharged back to the NH, but she never really got back to her previous level of functioning.

When I called the pulmonologist to follow up, he told me in no uncertain terms NOT to try another tap. His own dad had died of similar issues, caused by congestive heart failure.

"Stop poking holes in your mother" were his exact words.

It is so hard to predict what is going to work, and what to leave alone. I'd want to talk to the pulmonologist after s/he examines dad and question what needs to be done. 

Frankly with late stage Alzheimer's, I think I'd leave well enough alone and may ask for palliative care to keep him symptom free.

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