Complete Respiratory Failure and What it Entails

Feb 22, 20215 min read

Here we are, the moment we've all been waiting for or well known about. Not that we've been waiting for it to happen. What happens when your lungs fail but your still a live? To be honest I'm not 100% sure on everything but I know some stuff from experience or because it will be what I'll soon experience. I'm sure there's still stuff I'm unaware of, but we'll cross that road when we get there.

To think without the tracheostomy this would be it. I'd probably be entering hospice care and being the off the wall goofy person that I am, I'd still be joking around. I'd probably be begging to go on one last adventure for old time sake too. One last site to see! I can't sit still or well lay still. It's not in me to do so!!

Behold I'm a live!! Don't be fooled though a trach is not a cure. I simply bought myself time. I will not live to be 90 years old! Reality, I may not live a year. I did not stop my respiratory muscles from failing. I simply gave myself a means to live and survive due to the fact my lungs will completely fail 100%. Unfortunately we are probably close to that point. We are at that point. I will remain on life support or Mechanical Ventilation until I die.

How do I feel? I cry randomly because there was a lot I didn't realize going into this that I just have to roll with and accept. Respiratory Failure is far more then JUST your lungs failing. It goes beyond that. Your lungs serve other functions and systems of your body as well.

When we switched last minute from an uncuffed to a cuffed trach tube I didn't realize until the day after surgery that I couldn't smell. I had NO sense of smell at all, NONE!! So apparently with a cuffed trach because it blocks the upper airway you can't breathe in through your mouth or nose so you can't smell.

Some say once you deflate the cuff your smell comes back, this varies greatly! For me, my smell came back but not very strong. I guess for smell it's also reliant on your respiratory function. The better you can inhale and faster you can inhale the better and faster those receptors can reach your brain. I have ALWAYS had the sense of smell of a hound. I can smell everything!! So to go from that to smelling almost nothing was devastating!! I'm already hard of hearing and in need of hearing aids or a cochlear implant. I rely on my other senses. Day to day is different right now. Once my lungs are done my smell will be too, especially because I will have my cuff inflated a lot more often then not. This is a big change for me that I was not expecting or prepared for.

I went into this surgery with such HIGH hopes that I would come out and be able to talk without assistance! I could do it without a Passy-Muir Valve. I would deflate my cuff and behold my voice would be there!! It was like a dream. I was SO proud of myself. From the moment I accidently heard my voice in the bathroom. The shock that I was going to be able to do it with no help at all! I got this!!!

That profound moment was short lived. Sure I could talk. I had a full range of sounds back. I pretty much sounded normal. What wasn't normal was the inability to get enough air in to get enough words and sounds out. This told me that my lungs had declined a significant degree. We were prepared for this, we knew it was going to happen. Its the reality of it happening in real time that punches you straight in the face to remind you it's real though.

Your vocal cords require air to pass over them in order for you to talk. In order to inhale air you need your lungs and to exhale air to pass over your vocal cords to talk and make noises you need your lungs. Without respiratory muscle function you can't talk. So when my lungs fail I will loose my ability to talk. I will really have no reason to deflate the cuff.

I wasn't very talkative growing up until I reached about 16. I've been making up for it for years now and with having kids and annoying them. I've had fun. I have a bubbly personality and always joking around. Very little bothers me, I'm the true optimist, and always ready to take on the world. I'm a free spirit & I've learned to use my words especially when needing to stand up for myself or even for someone else.

It's definitely hard to accept that this is really it. I wish I had known this info before... like long before so I could have made so many more videos! I'm glad I did make the videos I have thus far just so they exist. Its something verse nothing.

My youngest in particular has been super worried and anxious about my health and what this all means. I don't hide anything from my kids. I may not tell them specific details but I tell them in a way they'll understand. My youngest is a mommy's girl and so we have our special moments together. She's definitely not shy with questions. As I say, I rather her ask then not ask and always question herself with what ifs.

One of her biggest worries was that she wouldn't be able to communicate with me. She didn't know many signs or have a phone or special apps. She was worried there would be this barrier between us where she couldn't talk to me. I had to sit down and explain to her that we were all learning ASL together as a family so we can all communicate, she would never need a special device to talk to me as long as she could hear mine talk to her. She can always talk to me no matter what because I'll always listen.

I think next month I may start journals for both of my kids where we can write back and forth to each other. That way they can feel like they are talking to me without verbally talking to me. Whether they write or draw me pictures its a way for them to communicate in their own ways. It's also something they'll have for keeps sakes too long after I'm gone. I know it will be super special to them both.

I'm just taking time to accept the changes coming and preparing myself for what's a head. We knew my lungs would eventually 100% fail which is why the tracheostomy was so urgent. I was down to about 9-11% respiratory function. My decline has been rapid. It needed to happen ASAP!!

My fight continues!! Life continues! I'll find my way through this obstacle too just as I've done the many others thrown my way. Watch out world, I don't back down from many challenges!

Thank you to all who continue to support me and my family through this journey. We can't do this without you! It really is the love & community that surrounds us that makes us stronger!! You all are our heros 💜🎉🤟🏼🌟🥰