Breathing issue

[Colleen15]

Hi, my breathing is starting to get worse, I use ventilator a few hours a day. I have weird feelings in my lungs, i assume, but
I dont know how to describe… a little shortness of breath, some back or chest funny feeling of a little pain and odd pressure?
When i use ventilator it helps. Does anyone know what i’m talking about?

 

[KimT]

Do you have a cough assist machine? You can see if using that makes you more comfortable. Even if you can cough productively, sometimes it helps even used in reverse to expand your airways. Has someone listened to your chest to make sure it sounds ok?

 

[lgelb]

I agree with double-checking for pneumonia, but the ventilator's purpose is to support your own breathing so as your breathing gets worse it makes sense that you have symptoms when not on it.

To be blunt, not using it for the hours that you need it (and I would count hours with the feelings you describe as "hours that you need it") will accelerate progression of respiratory impairment and also are a risk for more secretions building up than would otherwise.

 

[Colleen15]

I had a home visit today with Neurology NP who listened to lungs. Sounded ok. So yes, we are working on this.
I use cough assist at like 8am, and 9pm. Will try it more during the day.
Using the vent. Makes my mouth super dry, so we are trying to find out why. I can use it for like 1/2 hour, but then I have to put water in mouth for a bit.
Going to have PCP visit, thats why i did this post, to see if someone could help me describe this symptom.
Thank you.

 

[lgelb]

You can adjust the machine's humidity level, and also the room's. Keeping the filters of both clean is important, too.

And sometimes you do need a different mask, esp. if you're using a full face mask, which really dries some people out. If that's the case, a nasal mask is worth trying.

Glad to hear lungs are not infected!

 

[oldgeek]

Your vent may need adjustment. I think you posted before that you are on volume assist. If your inspiration time is too high; and/or your respiratory rate is too high - you could have "air trapping" and some lung damage known as "barotrauma" With volume assist, the vent will attempt to push in a certain volume with each breath. If you don't have time to get the air out from the previous breath(s), your lungs will trap the air and it can cause pain and lung damage. By lowering the inspiration time (more air is pushed in quicker to give time in the cycle for the air to escape after); and by lowering the respiratory rate (which gives more time between breaths for the air to escape) -- these will help reduce the air trapping. The other setting you will want your RT to look at is the alarm settings. In my case, I got tired of the alarms so I turned them off (very dumb) and so I didn't know the vent was pushing more and more air and damaging my lungs. Like you, I had back pain and it hurt to breathe on and off the vent. They ordered a CT of the lungs and found the damage. My pulmonologists and RTs slapped my wrists appropriately. So the NET/NET is: see if they can order a chest CT (XRay is not good enough) and then have your RTs make adjustments.

 

[lgelb]

I would qualify that a bit, oldgeek, by saying that the RR and time to expel trapped air are not synonymous. It is by adjusting volume coupled with cycle sensitivity that we get the most bang for our buck in trapped air. RR only applies to breaths that the machine triggers, and we actually are better off to avoid those entirely -- to trigger breaths ourselves using trigger sensitivity and volume to make that as easy and comfortable as possible.

But I typically start off by saying, do what you can with external factors like the mask, before adjusting settings. That way, you know you are adjusting the settings in, well, the right setting.

Always happy to help anyone make either kind of adjustment.

 

[Colleen15]

Oldgeek, thank you, that is important info ! !

 

[oldgeek]

lglb: thank you. The reason I suggested is for her to seek professional guidance is because we are all different. For example, you comment: "we actually are better off to avoid those entirely -- to trigger breaths ourselves using trigger sensitivity and volume to make that as easy and comfortable as possible" that might be good for some but not for others. In my case, I have a paralyzed diaphragm and so I cannot trigger breaths. Plus, my brand of ventilator does not have a setting to allow me to set "cycle sensitivity" since I can't use it and don't need it. I'm a retired medical provider and even so, I have a team of pulmonologists and RTs that I allow to make these settings for me. If you reread my post, I suggested that she seek medical advice and unless you are a trained medical provider, I suggest you temper your comments to avoid harming folks here you know little about. For example you tell her to adjust her mask. Are you sure she does not have a trach?

 

[lgelb]

Yes, I know Colleen not to have a trach nor a paralyzed diaphragm. However, I have helped PALS with and without either.

I always volunteer to correspond directly with P/CALS as per above, and at that point start with pics of existing settings and info such as height/weight/lung hx/perceptions of existing settings/machine data, with titration, for all the reasons you mention. Several of these questions are posted on my profile for discussing with providers if one chooses.

Many PALS have a backup rate that is set too high, which is one way that synchrony between their natural respiratory drive and the machine is often lost. Once synchrony is achieved through whatever settings the machine has available, the trigger rate for a comfortably low backup rate drops dramatically. When the machine is too basic for this to happen, I recommend and help source a more advanced model and have done so for P/CALS worldwide.

But many people do not even know that they have settings that can be adjusted, and noting generally that these settings exist is hardly malpractice. I take individual settings off line for the very reason that they cannot be generalized, and if you read the respiratory sticky, you will see that fact writ large.

It is also irrefutable and a published finding that many P/CALS do not have timely access to the specialists that you do, and I will add from contacts with hundreds of P/CALS that even when they do, settings are often treated as set or forget, set too aggressively initially, and/or otherwise not optimized for daily/nightly environments/masks or other interfaces used.

Many P/CALS are made to feel or flat-out informed that adjusting settings is illegal or wrong, which leads to much unnecessary suffering as well as constraining survival itself.

My Q&A approach, which I have honed over the last 30 years, often includes considerable titration, and has been validated over the years by RTs, pulmos, CV surgeons, and cardiologists along with PCPs. I also provide and answer any questions about the machine's clinical manual, and work in concert with the person's RT or pulmo if/as desired. I don't believe in black boxes, either, and if I am out of my depth, will say so.

No one need accept my help and everyone that I correspond with can learn more about my credentials, but I don't think it's my place to list them here. I am also very findable on LinkedIn, Google Scholar, ResearchGate, etc.

 

[Colleen15]

Hi all, this is really strange…. I thought this was a lung issue because i feel discomfort in chest and back. I went to PCP, had EKG and chest xray. Both normal. Finger oxygen 93. Pcp suggested it could be acid reflux. Gave me prilosec type rx. Started med Saturday. Started paying more attention to symptoms. They seem to start when I take my gtube formula. ( i eat and drink all by gtube. ) i take 2 cartons 9 am, 1 pm, 6 pm. Today i had only 1 carton at 9 am, and there were no symptoms. Today 6 pm, used inly 1.5 cartons, symptoms got worse toward end of carton. Does this sound familiar at all? Ps, have been using this formula since August. Other than formula, the only other things that go in stomach are lots of meds.

 

[lisa g]

Colleen, your taking 2 cartons per feeding? That's an awful lot for one feeding. Did your dietician recommend 2 cartons? If the cartons are 11 ounces each and you're flushing your tube with 60cc's before and after I would think that it's too much. My stomach hurts just thinking about that much intake at 1 sitting. I would double check with your doctor on the amounts.

 

[Colleen15]

LisaG, They are 8.5 fl oz, 375 calories each, and 60cc water before & after.

 

[lisa g]

What brand are you using? Your taking in over 2,000 calories a day. Did you have a problem with keeping weight on?
Kate Farms 1.4 standard is 455 calories 20g of protein and is an 11 ounce container. I was taking 4 a day but found I was putting on more weight than I wanted so I talked with my dietician and cut back to 3 a day. My weight has been maintained. So at each feeding I'm taking in 11 ounces of nutrition and flushing with 60cc before and after. For me I'm full after the feeding anymore would upset my stomach.

 

[Colleen15]

Lisa G ….Nestle Isosource…6 cartons 2,250 calories per day. I only had lost maybe 6 lbs before feeding tube. They told me ALS patients in the Obese zone live longer. i weigh 195. Pre my diagnosis I weighed 192. So my weight is ok, but yes, feeling full so i am cutting down. I move around a lot less now, so that is probably a factor.