Living with a trach (tracheostomy), need advice.

Posted by mindyt @mindyt, Oct 30, 2021

My situation is when carrying things, walking upstairs (unspecific other times also) it’s like I can’t get enough air, I’m breathing but it’s like not enough for the exercise, I almost pass out, I feel like I can’t breath … I have learned to stay calm and pull out the tube in my trach - sometimes this gives me the breath I need but once in a while it takes min before I get relief. I have mentioned it to my local ENT that scopes me … he is so rude and says it’s in my head, so it is not in my head but there is my question is anyone else experiencing this and have you an idea as to what happens here? Has anyone tried to get a larger trach for resolution?

Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.

@colleenyoung

Hi @neetneet, I'm tagging fellow members like @jeffk @deborahe @evamarie0077 @calenbd @karlm @sepdvm @clevyjam @hrhwilliam and @thomason who have dealt with trach removal and/or thick mucus secretions. They can share their tips and experiences.

Should you wish to inquire about getting an appointment at Mayo Clinic to help with decannulation of the trach, start here: http://mayocl.in/1mtmR63

I'm sorry to hear about the stroke. What is helping to thin the secretions?

Jump to this post

I don’t feel qualified to offer an opinion here.
I think best to check in with medical professionals.

REPLY

Greetings: Thank you for your comment. They are putting patches behind the ear. But the secretions have not diminished. He now is getting infections. One temperature of 105 which with antibiotics returned to normal the next day. Then he had another slight temperature. So they are looking into it now. The Trach has been in since mid February. The doctor's at the hospital said it should be removed at some point because he was on a ventilator and now is off, they were able to regulate his medicine (problems with his medicine caused the stroke). They took him off of Warafin and he is now on Lovenox. I would like to have a consultation with Mayo clinic to see our next steps. Thank you for that contact information. I appreciate any other suggestions. The doctors all are surprised on how he is in such good shape--he looks much better in person than he does on paper. This is with every doctor.

REPLY
@neetneet

Question: I seeking information on getting the TRACH removed after it has been capped for 24 hours. Thus far I have reached 13 hours but then the secretions were too thick and was causing my heart to stress. Trials are to start again. I had a stroke and though I can swallow and cough up secretions, if they are too thick I cannot cough them up. Question 1: What makes the secretions so thick. Question 2: Would the Mayo clinic assist in helping with decannulation of the trach. I am 80 years of age.
When the stroke happened all the physicians agreed it would be needed for a short time period. So we wait to try to thin out the secretions.

Jump to this post

@neetneet, I too suffer with a lot of mucus, but mine is from radiation treatment. Then, the vocal cords paralyzed which trapped the mucus. The mucus being trapped, was a nightmare of hospitalizations, and constant antibiotic use. This is because the mucus caused aspiration-type lung infections. So, a few years ago I received a Tracheotomy. At age 64, it is the best thing that has happened to me! I can either suction the mucus out or remove the Trach Tube several times per day for cleaning. The preferred method for me is to remove the tube, wash it under hot water while scrubbing it out with wire brush (which comes with trach-cleaning kits), then rinse with hydrogen peroxide, then a final sterile water rinse. This has proved the best way to remove the mucus and is recommended by my ENT. This method also greatly reduces Granulation Tissue from building up, because you are keeping the area under the Trach-Tube well cleaned.
While your mucus issue is a mystery to me, maybe the above tips can help you live with the Tracheotomy. Having the Tracheotomy enables you to remove the excess mucus, so you may want to look at it in a life-saving light instead of a burden. Also, I do not, and have not worn the Inner-Cannula for two years. This helps me breathe much better. That piece is only there to catch mucus. As long as you keep it clean, the Inner Cannula piece only inhibits breathing fully. My ENT knows I do not insert that piece, and he is fine with it. Cleaning it out about four or five times per day, only takes about two minutes each time. I hardly notice that I have a Tracheotomy anymore! Best of wishes to you.

REPLY
@thomason

@neetneet, I too suffer with a lot of mucus, but mine is from radiation treatment. Then, the vocal cords paralyzed which trapped the mucus. The mucus being trapped, was a nightmare of hospitalizations, and constant antibiotic use. This is because the mucus caused aspiration-type lung infections. So, a few years ago I received a Tracheotomy. At age 64, it is the best thing that has happened to me! I can either suction the mucus out or remove the Trach Tube several times per day for cleaning. The preferred method for me is to remove the tube, wash it under hot water while scrubbing it out with wire brush (which comes with trach-cleaning kits), then rinse with hydrogen peroxide, then a final sterile water rinse. This has proved the best way to remove the mucus and is recommended by my ENT. This method also greatly reduces Granulation Tissue from building up, because you are keeping the area under the Trach-Tube well cleaned.
While your mucus issue is a mystery to me, maybe the above tips can help you live with the Tracheotomy. Having the Tracheotomy enables you to remove the excess mucus, so you may want to look at it in a life-saving light instead of a burden. Also, I do not, and have not worn the Inner-Cannula for two years. This helps me breathe much better. That piece is only there to catch mucus. As long as you keep it clean, the Inner Cannula piece only inhibits breathing fully. My ENT knows I do not insert that piece, and he is fine with it. Cleaning it out about four or five times per day, only takes about two minutes each time. I hardly notice that I have a Tracheotomy anymore! Best of wishes to you.

Jump to this post

Thank you Thomason for your reply. Knowing that the excess secretions are not just unique to my husband. But most important your comment on the procedure you use to obtain relief. Your comments are appreciated for they are a source of an awakening and light on what we have been experiencing. I greatly appreciate your statement.

REPLY
@neetneet

Question: I seeking information on getting the TRACH removed after it has been capped for 24 hours. Thus far I have reached 13 hours but then the secretions were too thick and was causing my heart to stress. Trials are to start again. I had a stroke and though I can swallow and cough up secretions, if they are too thick I cannot cough them up. Question 1: What makes the secretions so thick. Question 2: Would the Mayo clinic assist in helping with decannulation of the trach. I am 80 years of age.
When the stroke happened all the physicians agreed it would be needed for a short time period. So we wait to try to thin out the secretions.

Jump to this post

I have not had a trach, but my father did at the age of 75. We managed his trach at home with some additional home care. Secretions will be thicker when you are poorly hydrated. Lots of water intake is needed. My dad had a stomach tube also so we gave him water along with his nutrient solutions. Running an ultrasonic cool mist vaporizer in the room may also help to keep the room air more humidified. Good luck to you on getting the trach removed.

REPLY

I had a trache August 2021. I was drowning in air one night and I had the op at Mayo next day. Scary stuff. Difficult at first, but I adjusted. I threw out my CPAP-one adavantage.
My only real regret is I can't swim and live on the beach. But, I'll take breathingf any time. Maintenance is constant, but I have a schedule and stick to it-process is imoortant. I'm 66 and back beingv active.

REPLY
@sepdvm

I have not had a trach, but my father did at the age of 75. We managed his trach at home with some additional home care. Secretions will be thicker when you are poorly hydrated. Lots of water intake is needed. My dad had a stomach tube also so we gave him water along with his nutrient solutions. Running an ultrasonic cool mist vaporizer in the room may also help to keep the room air more humidified. Good luck to you on getting the trach removed.

Jump to this post

Greetings Sue: Thank you for your response. I am looking at all angles as to my next steps. When you say with additional home care, what did that consist of and how did you know what to do or who to bring in. I have contacted Mayo and John Hopkins thanks to the information that has been supplied through the post. Presently where he is he is getting infections--too many secretions sitting in the outer cup of the TRACH we are working with the staff to get more cleaning of that area--not suctioning because he can cough up and swallow-but it gets thick and sits in that outer cup and then runs down on him. I need to set my home up in case he does need to come home. I want to be prepared in case the Trach is not capped at this location they are looking to send him to next step locations too far away and I will not be able to get there to see him. I go daily and stay from 10:00am to 5:00pm each day. I know I will need a local ENT doctor -- I am looking into that now. Thank you for the information you supplied.

REPLY
@jimthomasintl

I had a trache August 2021. I was drowning in air one night and I had the op at Mayo next day. Scary stuff. Difficult at first, but I adjusted. I threw out my CPAP-one adavantage.
My only real regret is I can't swim and live on the beach. But, I'll take breathingf any time. Maintenance is constant, but I have a schedule and stick to it-process is imoortant. I'm 66 and back beingv active.

Jump to this post

Greetings Jimthomasint: Thank you for your comment. What did you find challenging about the CPAP machine. My husband had one which we used constantly but later stopped using. I want him to be able to get back to being involved. He has not seen friends or talked to people (he cannot with the Trach but he can talk). He needs extensive PD for an old basketball injury of his right knee. The knee is painful and sensitive to the touch. We cannot really address this issue because we are working on the Trach issue. They do give him PT and OT once a week which will not really bring about any change. They are working on balance which is the first step. In the hospital they did have him stand but he could not put pressure on the leg with the bad knee. At home he used an up-walker for mobility--it was a great help. He has not stood up at his present location but has sat up in a special chair and also along side of the bed to do some balance exercises. I am a routine person so I am in the process of getting rid of years of clutter and preparing for next steps. Thank you for your post. We love the beach also. The sounds of the waves flapping is so refreshing and relaxing. I like your finishing point-"back to being active." That is what I want for my husband of 55 years. Our anniversary is coming up on April 13. Thanks again!

REPLY
@neetneet

Greetings Sue: Thank you for your response. I am looking at all angles as to my next steps. When you say with additional home care, what did that consist of and how did you know what to do or who to bring in. I have contacted Mayo and John Hopkins thanks to the information that has been supplied through the post. Presently where he is he is getting infections--too many secretions sitting in the outer cup of the TRACH we are working with the staff to get more cleaning of that area--not suctioning because he can cough up and swallow-but it gets thick and sits in that outer cup and then runs down on him. I need to set my home up in case he does need to come home. I want to be prepared in case the Trach is not capped at this location they are looking to send him to next step locations too far away and I will not be able to get there to see him. I go daily and stay from 10:00am to 5:00pm each day. I know I will need a local ENT doctor -- I am looking into that now. Thank you for the information you supplied.

Jump to this post

You sound very organized and prepared, but all of it is stressful for you. This was 20 years ago when my Dad fought oral SCC and finally passed away. My husband was a hospital Respiratory Therapist at the time, so he taught all family members how to suction, as well as the home care nurses/aids that were there at night. Family covered daytime hours. He went on to have a home health care business where he employed RTs to do home visits for ventilator and trach patients. Talk to local hospital social workers about discharge into home care as there will be local agencies who provide what is needed for home visits....nurse visits, PT, OT, even home doctor visits. Medicare usually covers this care as long as patient is making progress, but it varies state to state. And my personal opinion is that frequent superficial suctioning would keep the secretions from building up around the cup, as well as very regular cleaning. I hope you are there to speak with the respiratory therapists about his situation, as they will likely have the most experience and best suggestions. Best of luck to you both.

REPLY
@neetneet

Greetings Jimthomasint: Thank you for your comment. What did you find challenging about the CPAP machine. My husband had one which we used constantly but later stopped using. I want him to be able to get back to being involved. He has not seen friends or talked to people (he cannot with the Trach but he can talk). He needs extensive PD for an old basketball injury of his right knee. The knee is painful and sensitive to the touch. We cannot really address this issue because we are working on the Trach issue. They do give him PT and OT once a week which will not really bring about any change. They are working on balance which is the first step. In the hospital they did have him stand but he could not put pressure on the leg with the bad knee. At home he used an up-walker for mobility--it was a great help. He has not stood up at his present location but has sat up in a special chair and also along side of the bed to do some balance exercises. I am a routine person so I am in the process of getting rid of years of clutter and preparing for next steps. Thank you for your post. We love the beach also. The sounds of the waves flapping is so refreshing and relaxing. I like your finishing point-"back to being active." That is what I want for my husband of 55 years. Our anniversary is coming up on April 13. Thanks again!

Jump to this post

My Cpap comment was relative. You gain 1 device you lose another. Losing 1 is good.

It's hard. Keep the faith and keep moving forward.

REPLY
Please sign in or register to post a reply.