Living with a trach (tracheostomy), need advice.

Ok Thomason I just went through all my supplements - no biotin but I know that I have taken it before. Also I was put on Dexamethasone my 2nd week of treatment because I was covered with hives large hives from head to toes they didn’t know why - it took away the hives and it caused diabetes so then I had to give myself daily shots and test 3 times a day - this went on for 2 months- I lost almost all my hair and had bone pain during treatment- but It took me months to get a Dr to check my thyroid- I was having palpitations and pain in my limbs - so I was told to fast and not take anything before the test but I’m hypothyroid I take 88 mcg everyday but like you I still wake up and it’s really hard to walk and use my hands I take pain medication and stretch to get it working and I’m being diagnosed with neuropathy for that I was told the chemo Cysplaten is a culprit for causing permanent neuropathy. I just have a hard time if I do PT and exercise it causes terrible muscle and bone burn to the point I can’t sleep but I keep giving up - but I am determined to try again now that the warmer temperatures are here I want to know if I get better if I keep at it - if I will breathe better without the build up and maybe my muscle recovery time is just longer and will get better.
Have you noticed body pain and breathing getting better for you with exercise?

Dear Mindy,
You are a miracle, for sure. Wow, you literally passed away. Thank God, you made it through all that! Your story has brought a few things to mind. Get ready, for this may be long. Approximately six months ago, my hair began falling out and severe crippling pain began in my thumb and wrist areas of both hands. It was to the point that trying to open a jar, or put a ponytail in my hair was impossible. Actually, it began in my feet before radiating up to my hands, and that lasted for a few weeks. It was almost impossible to walk when first waking up in the morning. In that year before the vocal-cord paralysis diagnosis, not only were antibiotics given orally (and intravenously in the hospital), but Prednisone and Dexamethasone steroids also. The Dexamethasone is not supposed to be given for more than a few weeks, yet I was on it for over one month. Dexamethasone can cause bone death, (usually in the feet) even a year after discontinued use. Fearing this drug had caused my pains, I went to my family doctor (PCP) and she sent me for bloodwork to test my Thyroid. It is well known that radiation to the throat area can bring on Thyroid tissue problems/deterioration, which can cause hair-loss and joint pain. The results showed borderline abnormalities, and immediately the PCP prescribed 25 mg. Synthroid. After two weeks, my heart began palpitating, I could not sleep, plus, the drug was not alleviating my symptoms at all. My daughter recommended her doctor, an Integrated Specialist. This doctor ran the same tests--plus a few others the lab claims are rare tests--with instructions given beforehand. THIS time, I was advised to take NO supplements before the test, and to fast. The previous doctor, even the lab, never told me to fast, or to delete my supplement intake. My usual supplements were a daily vitamin, and other herbs, plus BIOTIN! This is a big no-no! This time, the tests came back normal for thyroid, which was a good thing, but very irritating to know the wastefulness of the first blood-work. Why this information about supplements is not given is very surprising, to say the least. The Integrated Specialist explained that the Covid may be causing the symptoms I was having, even months later. On my own instincts, I quit taking all my supplements, even the daily vitamin. After a few weeks, my hair stopped falling out, and my pains are almost totally gone. The only supplement I take is one capsule daily of an over-the-counter product called "Thyroid Energy, " as the Integrated specialist prescribed this.
I am saying all this for you to consider a few things: Have you ever had a Covid Antibody test? The local Kroger Pharmacy does them here for $25.00. Maybe you did have Covid, and never knew it. If so, time may heal your pains. Secondly, if you are taking supplements, stop for a few weeks and see how you feel. Remember, the lotion we put on our skin absorbs into the bloodstream, so examine that if you use lotion. Use Olive-Oil on your dry skin with a water mist. Cooled Gel-packs on the painful areas also work well to alleviate the pain.
As for the Lymphedema, we are in the same boat there too. My chin area, and neck swell up. Massaging does help, and a headband is also really helpful, by wrapping the headband vertically around your chin. Try to find one of those electric neck massagers at a thrift store for a few bucks. They really help the swelling in the neck. One thing that really brings on the Lymphedema is any irritation to the area around the Stoma. The humidifier prescribed by the ENT, comes with a mask that wraps around the neck with an elastic band. The mask part fits onto the Outer Cannula. That elastic band, although not tight, will bring on the Lymphedema. There is a plastic piece that can be purchased, that fits onto the humidifier tube, and Outer-Cannula, so no strap is required. The second ENT told me that the area is filled with delicate lymph nodes and channels, so it has to be treated very delicately. Before trying that new Stoma-Vent (did not work for me) the first ENT prescribed, my Lymphedema had practically gone away. It takes a long time for everything to settle back down.
Please know I am very interested in any and all tips you can give me! We can help each other so much. Just think if all the people with Tracheostomies shared their knowledge. Thank-you, for listening.

@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?

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…

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.

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

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

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

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

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.