Claiming to be short of breath while on trach and vent

[kleptoice]

Hi guys,
My dad got his tracheotomy and ventilator a little over 2 weeks ago. When we were at the hospital, he was doing fine adapting to it. His heart rate was around 70-90.

However, we just moved to a nursing facility that has a subacute section and the first week, he was doing fine. But in the past week, he has been claiming that he was feeling short of breath. I checked his O2 and it was between 96-98, but I still let the respiratory therapist there know. They all said everything was fine but the only thing to worry about is his heart rate which has been between 100 (after he just wakes up) to 135. It is normally between 110-125.

The doctor prescribed him Ativan on Wednesday but his heart rate is still very high even after taking it, and he will claim to still be short of breath and will get frustrated when I don't call the RT. I really don't know what to do. I expressed my concerns to the nurses but they say it's anxiety, which I know. They tell me to wait 30 min until the medicine hits but even after that he still claims to be short of breath until he falls asleep. I am very worried about his heart rate being so high. He recently got a UTI but he is on antibiotics, so one RT said that could be a factor in why his heart rate could be so high.
I just feel very stressed out. I am a college student and my mom and I alternate between watching over my dad, and she stays the night with him everyday and I try to stay once a week. During those times, he will wake us up every few hours saying he isn't getting enough air but I will check his oxygen and it will be high. I have tried massaging my dads head, feet, and back to help relieve some stress. I even played some music in hopes of relieving him from some anxiety.
None of the nurses feel very helpful. I understand their logic but I just get very stressed out when my dad says he feels like he can't breath and the nurses just tell me to wait until the medication kicks in. I do know that at night, he gets very hot and in the morning he gets cold. I am not sure if that means anything. One thing that seems to help are breathing treatments given from the RT.

I would greatly appreciate any help.
Thank you so much

 

[KarenNWendyn]

Some things to rule out as causes of shortness of breath and rapid heart rate: fevers, anemia, dehydration, infection, pulmonary embolism (blood clots in lungs), excess mucus in airways, congestive heart failure. I would advise discussing above possibilities with his doctor. Bronchodilators such as Albuterol can also cause rapid heart rate, and often these are used in breathing treatments.

Good luck,

 

[lgelb]

The UTI could certainly be part of the issue, but then again he could be reacting badly to antibiotics, too. Ativan can be a feast or famine kind of thing and likely not the long-term solution to this, if the breathing issue remains after the infection and antibiotics are done with. But waiting for those is a place to start.

You should be aware that in ALS, shortness of breath seldom tracks with oxygen sats.

Best,
Laurie

 

[Inventor]

I had the same feeling in the beginning. The main reason was that the tidal volume was set according to my height, not taking into account that I have short legs and very long back. The pulmo told that PALS tend to feel better when they are slightly hyperventilated. Oh and the cough assist helped too.

 

[lgelb]

I wasn't considering settings the most likely issue, since he did fine to begin with, not long ago, and has an active infection. However, any machine data would be helpful.

Also, it is not the case that PALS always do better hyperventilated by the traditional Vt formulae-- if/as the muscles/lungs/metabolism can't handle that, the opposite is often true.

 

[kleptoice]

Some things to rule out as causes of shortness of breath and rapid heart rate: fevers, anemia, dehydration, infection, pulmonary embolism (blood clots in lungs), excess mucus in airways, congestive heart failure. I would advise discussing above possibilities with his doctor. Bronchodilators such as Albuterol can also cause rapid heart rate, and often these are used in breathing treatments.

Good luck,

Thanks, I really appreciate the response. This is the kind of information I was expecting to hear from instead of just having it get blamed on my dads anxiety. I think it could either be anemia, an infection, or congestive heart failure. Water intake should be taken care of by the facility, his temperature is fine, and I believe the machine should inform us if there is any blockage and his oxygen levels are fine. I also don't think it could be pulmonary embolism because he says he feels no pain.
When he got his peg tube, doctors took samples of his blood and said there was a possibility that there were signs of stomach cancer as well, but they said because of his current state, it would be best to just ignore it.

 

[kleptoice]

The UTI could certainly be part of the issue, but then again he could be reacting badly to antibiotics, too. Ativan can be a feast or famine kind of thing and likely not the long-term solution to this, if the breathing issue remains after the infection and antibiotics are done with. But waiting for those is a place to start.

You should be aware that in ALS, shortness of breath seldom tracks with oxygen sats.

Best,
Laurie

Thanks for the help, I appreciate it. I agree, I hope we can find out what it is and not have to resort to Ativan. I also agree with what you said about that. It's just that the respiratory therapists say since the machine doesn't show any errors and his oxygen levels are fine, they say there's no point to "fix what's not broken". https://m.imgur.com/a/tesOQ This is his stats on the ventilator, I am not sure if this means anything to you.

 

[KarenNWendyn]

If he truly has stomach cancer, this can lead to rapid heart rate and shortness of breath through blood loss leading to anemia and volume depletion. Also, if the tumor has metastasized, it can go to the lungs. If there is an extensive amount of tumor in the body, heart and lungs have to work harder to supply blood and oxygen to the tumor cells. If he is in pain (for whatever reason), this can also cause raid heart rate and sensation of shortness of breath.

 

[kleptoice]

If he truly has stomach cancer, this can lead to rapid heart rate and shortness of breath through blood loss leading to anemia and volume depletion. Also, if the tumor has metastasized, it can go to the lungs. If there is an extensive amount of tumor in the body, heart and lungs have to work harder to supply blood and oxygen to the tumor cells. If he is in pain (for whatever reason), this can also cause raid heart rate and sensation of shortness of breath.

Thank you for your response. Because he just started feeling short of breath last week, I am hopeful in believing that it's not the stomach cancer because I feel like it would have been more gradual, and he declines feeling any pain.

 

[norjeana]

My husband on vent cannot eat drink , cannot walk but mind ok. Writes when he needs something. I am just so sad and we only have one family member who can come twice wk for hour at a time. I try and stay 4hrs a day and even that takes a lot out of me. I have tried to find a grieving site but was advised to go here. He has been on vent since January. ALS diagnosed last August. We had a very close wonderful marriage and I am devastated but I have to be strong for him. We have a large family but far from here.

 

[kleptoice]

My husband on vent cannot eat drink , cannot walk but mind ok. Writes when he needs something. I am just so sad and we only have one family member who can come twice wk for hour at a time. I try and stay 4hrs a day and even that takes a lot out of me. I have tried to find a grieving site but was advised to go here. He has been on vent since January. ALS diagnosed last August. We had a very close wonderful marriage and I am devastated but I have to be strong for him. We have a large family but far from here.

I am sorry to hear that. I wish you the best of luck. Hopefully you can contact an ALS clinic nearby and ask for help.

To update everyone: My dad still claimed to feel very short of breath the past two nights, but it had gotten a lot worse. Instead of calling for us every two hours, it slowly began to be every hour, and then every half hour. The doctor at the facility said they x-rayed him and everything was fine and that he just needed to be on stronger anxiety medication.

However, I believe in my dad and when he is really in discomfort, I can definitely tell. He also threw up some yellow liquid the last night he was there. I eventually decided to call the paramedics. Everyone at that facility was very against it and said all his vitals are fine and he'll just get sent back, but guess what? Turns out he wasn't digesting anything given to him through his PEG tube. His stomach has been gradually getting larger but I thought it was because he started getting more nutritions.

After two weeks of being in discomfort with no aid and being told it was his anxiety, we went to the ER and in five minutes, they got out 2500mL of liquid that he couldn't digest and my dad instantly felt better. They said there was lots of blockage from his stomach not digesting and there was a chance it was from his disease progressing. I am just very frustrated because the doctor at the facility said that his stomach being bloated was just stomach gas from not moving around, and they even said that they X-rayed him and it showed that everything was fine and that it was just his anxiety. At least now he is fine at the hospital.

 

[KarenNWendyn]

Hi kleptoice,

I’m glad your dad is feeling better. You have good instincts. Best of luck to you and your dad.

To norjeana,

Sorry to hear about your husband. It probably would be best if you could open your own thread, however, and you’ll probably get more feedback and support.

 

[Manhattanite]

Wow kleptoice I am really impressed by the way you managed this situation - it confirms what I have always believed about CALS having to be strong advocates for our PALS even when we have to move mountains and go against what medical institutions recommend. Your dad is very lucky to have you!

 

[affected]

It's always a fine line, but at the end of the day the person who knows the PALS well has the best gut instinct. I'm so glad you learned that if your gut tells you something, go with it. I bet you have him to an ER way earlier if there is another similar situation.

I hope they now find why there is a blockage and sort that for him as he need all those calories.