Living with a trach (tracheostomy), need advice.

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.

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?

Since I first posted this question, I have set a date for getting a trach - next Wednesday. Thanks, @colleenyoung, for your queries. I have been living around thyroid cancer for 17 years now. I had a temporary trach in 2005, for about six weeks after a tracheal resection, and have had a dread of it ever since. However, my wonderful doctors are alarmed by the narrow aperture they see when they scope me, between the one long-frozen vocal cord and the one that works. I have some symptoms of low oxygen intake, even though I am pretty active for a 72-year old grandmother. Getting a tracheostomy now is a measure to prevent prevent breathing emergencies. I hope to keep on being able to ride my e-bike, take walks, and help my daughter in her garden. Thank you, @jeffk and @thomason and others for sharing your experiences.

Dear Genevievee,
You will be very relieved and happy.
Take care, and please update!

Dear Mindy,
You really went through hell. I am so sorry to hear of all that pain. The last two years, I have not done my pre-cancer exercise routine. It isn't that I can't, it's just that living out in the country keeps me very busy physically. With the trach, my energy is back, so gardening, canning, and drying food, mowing the lawn, hanging laundry (to save on electric bill), grocery shopping, and cooking is my exercise. It is difficult to get out of bed some days, and usually there is a nap in there somewhere! There are many animals that need cared for too, so that takes energy. Yes, I force myself to plow through it, and it does help to stay physically active. But, resting is also very important--a delicate balance. Activity does not seem to help my breathing, or lessening the pains. As long as the trach-tube is cleaned out a few times day, breathing is okay. The Integrated Specialist tested for Vitamin D, so sunlight is very important. One Vitamin D3 2000 mg. per day is good too. The pains in my hands (thumb and down to wrist) come and go. By the way, X-rays of the hands showed nothing, which was surprising. I have a feeling that with time, you may start getting better.

This is really helpful- with all your daily chores you don’t need exercise routine. It is really inspiring to me to hear all that you do with your trachea so I can get busy I am totally going to have a few more labs done and make sure I on the best healing path thanks for your insights.
Best regards and application!

Oops appreciation

Did you ever get the tracheotomy?

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.

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?