Living with a trach (tracheostomy), need advice.

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?

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.

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

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!

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.

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.

Welcome, @genevievee. I think @jeffk @deborahe @evamarie0077 and @thomason may have some tips for you about doing common activities like Zoom calls, conversations with strangers, exercise etc. with a tracheostomy.

While we wait for others to join in, Genevieve, can you tell me a bit more about you? What led to your needing a tracheostomy? How long have you had it?