Living with a trach (tracheostomy), need advice.

I myself am also trying to wrap my mind around living with a permanent trach - in February another attempt in surgery not a failure but no hopeful news of improvement, has shifted me to my reality. Thank you for asking the right questions, we can all learn together.

This is really helpful information- thank you

Dear Genevievee,
To answer about zoom calls and water sports, I have a Passy-Muir valve to speak, but it makes breathing very difficult. I wear a scarf around my head when I go out, and sometimes will use it to speak by grabbing a small amount of the clean cloth and pressing it onto the stoma with my finger. Other than that, I just use my finger when it is hygienically possible. Also, I carry 90% Alcohol (homemade) wipes with me, to clean the outer and slightly into the interior of the outer-cannula. The wipes are used on hands, steering wheel of car, gearshift, etc. When showering, I direct water at a low-angle, so there is no need to cover the stoma. Sometimes, it is easier wash hair in the sink, and shower off afterwards.
As for water, well...I love to swim, but dunking head underwater is obviously out. A person with a Trach can still go in the water without letting it come to the level of the stoma. On a hot day, you can lean back and let your hair and back of head get wet to cool off, while walking in the water.
Other things that have changed: I was a thrift store and bought a personal alarm. This may come in handy in an instant, because a person with a tracheotomy can not instantly scream, and yelling is hard to do.
Shopping is the same for me. When the tracheotomy was first performed, I feared people would stare. It is really surprising, yet in an almost entire year of having the tracheotomy, only a few people have ever stared. It is embarrassing when I have to clear mucus into a tissue, while standing in line in a store. It sounds like a congested seal barking. Eating chocolate, or drinking protein shakes, causes alot of mucus. That is okay, as I just pop out the trach-tube and clean it afterwards. In addition, it is good to carry saline spray with you, so if you are away from home and stopped-up, a little squirt should break it up. Then, you can use a bunch of tissues to hack it out. The tissues with lotion are more expensive, but they do not shed a ton of dust like regular tissues, so they are well worth the cost. I thank God I am able to eat and drink. The nutritional therapist did not want to remove my feeding tube, but I insisted. I did throat exercises, which very slowly began to help me regain the ability to eat and drink. The radiation for throat cancer really took a toll.
@jeffk, it is good your trach was temporary. Every-time the ENT scopes me, I ask if my vocal-cords are moving any better. his answer is always "no!" Oh, well!
So, I thank God every day, that I am alive, and can breathe. Before the vocal-cord paralysis diagnosis, it was one year of not being able to breathe very well, then to the point where I almost died. Just bending down to pick something up, and I had no breath. All the mucus from radiation was trapped below my vocal cords too., so it was not a good situation. Maybe in the next realm, God will deem me worthy enough for a new body--and that prayer goes for all of us! Thank-you, for listening.

Thank you so much, @thomason! All those details are really helpful to me.

Similar to Jeff, I had a temporary trach, and it looks like you got great advice from thomason. I wish you all the best.
-Deb E

Jeff,
Thank you for sharing and if I could ask a question and I have a comment and I’m sorry for high jacking your share for Genevievee. So question is about the buildup below your vocal cords from the radiation and trouble breathing when you bend down - did this go away on it’s own or did you have to do something? Also do you notice this mucus trapped below the vocal cords taking your voice too?
My comment for you is that for only 1 year out - you are doing really great and have gained knowledge that I missed and I am 2 years out and I am learning from you.
Thank you
Mindy

Oops -
I meant to ask Thomason - sorry Jeff and Thomason

Dear Mindy,
I had Covid twice. Once during radiation treatments, and once right after my second vaccination, one year apart. The first Covid was almost right when it started, around March 2020. Because Covid was so new, the Oncologist did not believe I even had it. Later on, an antibody test proved otherwise. It was a horrible four months of coughing violently, and breaking three ribs in the process. The broken ribs were somehow unbeknownst to me, and found during a CT Scan. The cough subsided, but the mucus never went away. Whether it was from the radiation, the Covid, or maybe a combination of the two, is anyone's guess. Due to the cough, I would not have been able to have the mask on for the radiation, had the Covid not happened toward the last few sessions. Even so, it was very difficult to stay still when extremely ill. During the day, I would nebulize with 9% Saline Solution (lesser percentages did nothing to break-up mucus) about nine times per day to try and get the mucus out, and be able to breathe. That many times nebulizing is dangerous, but the trapped mucus was literally driving me nuts. Nighttime was a nightmare. Up and down all night long, night after night, nebulizing. Soon the treatments were not helping much. The ER at the hospital was getting use to me. On three occasions, always around 1:00-2:00 a.m., there were episodes where I could not breathe. My husband could not get dressed fast enough, and he was left behind! I felt like I was literally dying. Honestly, how I ever made it to the car is a miracle. The fact the car had air-conditioning, helped me catch my breath, just enough to make it to the ER., which is a 7-mile trip from my home. When you are dying, you do not look at the speedometer, for the car was going around 100 mph on the deserted highway. During this entire year, I went to several doctors and ENT's, with the result being around twenty chest x-rays, constant antibiotics, four hospitalizations for lung infections, Lung Endoscopy, etc. There was a product that saved my life. Right before the vocal cord paralysis diagnosis, a nurse at the ER gave me a nebulizing treatment with Epinephrine. That treatment helped so much, it was just incredible. The Pharmacist recommended Primatene Mist with Epinephrine, and that product got me through the last few months. Trying to breath was so bad at that point, just bending over to pick a tomato was overwhelming. It wasn't until 2021, after the second Covid vaccination, that finally, an Indiana University ENT found the vocal cord paralysis. In fact, I became extremely sick with actual Covid after the second shot, and during that hospitalization, the vocal cord paralysis was found. Long story short (sorry so long) the trach was put in about one year ago. As for the voice, after radiation, I had no voice at all. In fact, if it weren't for the speech therapist, I probably would still have no voice. There are a bunch of tedious exercises that seem like they would not help, but they really do. It took over a year before my voice came back. Losing your voice is a big deal, and a person does not realize how much it really means until it is gone. The whole thing is odd to me...that a person can have paralyzed vocal cords and still be able to talk. All that mucus is now right there, ready to be suctioned out. Being able to get it out, allows for a full nights sleep, which is so important for health. I have learned to not eat or drink anything sugary about two hours before bedtime. This really lessens the mucus, so there is very little build-up at night. We must all be our own advocates when it comes to our health. Two different ENT's telling two different things. One says not to remove the trach for cleaning, while the other states it is a must, like brushing your teeth every day. The second opinion is the one that makes sense, and that advice provides much breathing comfort. In the end, having a Tracheotomy is a burden, but a life-saving burden. Every day is a gift from God. Please share any tips from your experience with your Tracheotomy. We can learn so much from each other! May God Bless You All.

Hello Thomason,
I again appreciate your journey, you’re just a miracle at this point nothing else explains how you made it through everything but thank God you did - I felt the same way but I have not had Covid and can’t imagine getting while I was in radiation and chemo treatment. My journey was different but also similar to yours- I knew something was wrong but had trouble finding a Dr to help me 4 years with off and on laryngitis and coughing- then I have a Dr that’s trying to help me for 2 more years - she sent me for every test and the Speach pathologist did a test with a machine showing fixed vocal cords - so I saw a ENT and was scoped and he missed diagnosed me - said I was fine. I just got worse for 2 years having every test done and one early morning like you I couldn’t breath my son drove me to ER 3:00am and after a chest X-ray said nothing was wrong with me - not to come back to the hospital unless I’m drooling. It crushed me - next day I stopped breathing - ambulance to another hospital and they revived me and sent me home - next day stopped breathing and I actually was gone they got a ventilator on me and I woke up in ER with my whole family we were all freaked out and the ENT that missed diagnosed me walked in and did my trach surgery I was there in ICU for 3 weeks finally he found a huge tumor and the cancer. After 7 weeks of treatments then back in ER with a very large PE can’t breath sick as a dog - I had blood transfusion because I was also anemic and IVs to remove the PE- the hospital was taking their first Covid patients so I had to move to another part of the hospital and it was wild - no family- all alone. I lost my voice about a year later I haven’t been able to wear a passé for over a year - it’s the scar tissue. But I am dealing with pain Maybe arthritis all over my body and a lot of pain in my trach area with muscle spasms- so I’m learning it is old age arthritis- I thought it was from the radiation- it’s really confusing with lymphedema and nerve damage- I think I checked out - I feel like in the last week I finally was back in my own body. I think I am getting better now. I am wondering if we will always have the suction machine or if it’s ok to let it go? Gods bless so now mine is the long one…

@genevievee, wow, this is quite the experience- and information-rich discussion that your questions kicked off. Any other questions you'd like to ask? How are you doing?