Beating the Odds

Apr 28, 20213 min read

I swear time just flies by! Now that it's gotten nice out I've been trying to spend some time outside. My posts will likely be more sporadic now. I apologize a head of time.

I am actually doing really well. Besides my usual body dysfunctions and typical pain things are going pretty well. So in my last post I talked about trying new things. So let's discuss this a bit.

I'm at this point where I'm like "what do I have to loose?" I'm dying and I can either do nothing or find away to fight and beat the odds. What did I have to loose by trying?

The cuff to my trach has a slow leak to it. While I had been keeping myself cuffed it became quite annoying to keep refilling the balloon every so often. I know I had a leak because the little balloon that fills the cuff was slowly deflating. I started deflating the cuff again during the day. The cuff is what keeps air from escaping out of the upper airway.

As many of you know I had a G-tube placed in early March. Since getting the tube I have been able to gain 5lbs!!! This is the most I've gained in 2 years! I do believe being underweight and malnourished for so long had a devastating impact on my body. While there is no cure for Gastroparesis (my stomach is paralyzed), it can be managed. Partly why I fought so hard and long for the G-tube. For more information on G-tubes and J-tubes refer to my blog "Another Surgery".

I have been and did a TON of research on different herbs and different natural ways to improve lung function. I've done the medical things, but now I'm looking for holistic ways. Please remember I am not a medical professional and cannot advise anyone to try anything that I talk about. Talk with your doctors and medical team before doing or trying anything. Do your own research as well!

In Asian cultures, especially Korean they use food as medicine and as a way of healing the body. With having a G-tube now, I have been blending different things into soups. While I cannot consume a lot and still have to be careful, this is something I am trying.

I never lost 100% of my lung function. I worked really hard on preserving what I had. I am very thankful I pushed for mechanical ventilation since it allowed my lungs and body to heal and rest. I regained a lot of energy and waited till I was in a stable place to try anything new.

I'll be honest it wasn't looking good there for a bit. Since getting more nourishment and gaining some weight and giving my body rest things slowly started getting better.

I disconnect from the vent to change clothes and change the inner cannulas on my trach and clean around the stoma. I used this time to go a little longer off the vent and see how I tolerated it. When I first started I couldn't disconnect for long periods before I needed to reconnect to the vent. There were times I'd question changing clothes because I didn't want to experience not being able to breathe. But by disconnecting and having to breathe on my own it also helped me to keep what little lung function I had.

In March I was disconnecting and I was getting comfortable doing it for short periods like going to the bathroom. I also started doing some deep breathing exercises when I thought about it.

About a week or so ago. So mid April I decided to see how long I could go off the vent. If anything I could just reconnect. I didn't go far from the vent either. I was able to go about 8 hours. So each day since then I have disconnected during the day only to reconnect for brief periods just to give my lungs a break or if I was just sitting around not doing anything.

So here we are April 28th three months since my tracheostomy surgery and I am able tolerate and come off the ventilator during the day. I honestly never thought I'd get to this point, ever! I really thought my life was doomed and things there didn't look great for me.

Fortunately things are getting better, slowly. This is where things are currently. Hopefully things will continue to improve and progress in a positive way.

Keep those prayers and positive vibes and thoughts headed my way. Thank you for all your support and love. As always I appreciate you all so much!!

I got some good news today and will share in another blog!! 😊