Jon Organ’s experience of living with a laryngectomy

I wake at 6 am load my nebuliser mask up and sit for 1.5 hours to clear my trachea from the night’s dryness.  This allows me to breath.

Once done, I then moisturise a lot on my head, face, and neck.  I change my base plate that holds my Heat Moisture Exchange (HME) on to the throat, which enables me to talk. Clean around the stoma and neck.  Warm baseplate and attach to skin. Fit my HME.

Next, I wash my face and brush my teeth using super high fluoride toothpaste. Get dressed and ready for the day.  Then at 9am its time to take my first dose of medications. Three different opioid painkillers and several others.

Breakfast is porridge. Catch up on the news and social media. 11am my physiotherapist and exercises for shoulders and neck.  Once finished I use my nebuliser for an hour, follow by more medications.

At about 1pm I try to for a walk just for about 30 to 60 mins or Nicky, my wife will take me for a drive.  Then by 2pm I lay down for a nap until about 4pm.  Once awake it’s the nebuliser for hour, then more medications and some dinner at 6pm.

Later in the evening its shower time.  I have to change the HME button in throat for a shower valve.  Nicky will fit me with a waterproof shower bib.  This is to stop any water entering the trachea through the exposed hole in my neck.  She helps me undress and then into shower.  I don’t stay in long as I get nervous regarding the bib and the shower valve.  Nicky helps wash my head and neck as I cannot raise my arms that high.  Once out she will help me dry and moisturise the skin around my throat and shoulders.

Final part of the day and my routine is the base plate to my trachea will be changed to a night-time base and HME.  I then try to watch television for an hour and take more medications.  Including all my night-time opioids and lidocaine (local anaesthetic)

patches for my shoulders and neck that Nicky puts on me.  I then nebulise for 1.5 hours then try to sleep.

I do get a bit of computer work done while I am using my nebuliser so that’s a positive to keep my mind active and it won’t be forever just while I’m healing. I will probably always do this at least once a day.  My medications are currently at 22 a day, they were 30 so I’m reducing.

The most fun filled day but keeps me breathing. As well as this I fit in hospitals and doctor’s appointments.

Thanks…

PS…I have not gone into the role of the nebuliser and secretions as it is not very nice but if I don’t clear there is a risk of a mucus plug that could be fatal.

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