I am trach free. I don't even know what sentence to write after writing something so profound and huge to me. I am part of several support groups online where there is a wide range of ages who have a tracheostomy. Some of moms, grandmothers, children, all with trachs. All who carry the burden much easier than I did. I admire them all for their strength and tenacity. For me, it changed my life, and I am ever so grateful to have it out and will do everything I can to keep it out. I got mine out, after being told it could not be removed by two doctors, through the amazing care I received at Cincinnati Children's. I would recommend them to everyone battling this disease with 100% of everything I am. If you are West coast and under the age of 22 I would recommend Seattle Children's (Dr. Inglis) as well. Cincinnati has saved me since being an adult. They have performed over 30 surgeries on me since March of last year and through those I am now trach free. In June I had a slide trachealplasty performed and that was the main procedure that led to the removal of my tube. It was an intense recovery involving being on a ventilator and intubated (sometimes while awake) and included weekly to biweekly trips to the OR. I had a stent placed and had it almost perforate my trachea as well as had an air leak that had to be urgently repaired and resulted in being intubated and on a ventilator again. I spent 7 straight weeks in Cincinnati, alone except for six days of it, having treatments and recovering. Since then I have gone back every 3-5 weeks for surgery including a lingual tonsillectomy which is, by far, one of the most painful things I have ever experienced. I would go through all of my other surgeries, and un-medicated labor, at the same time, before wanting to do that recovery again. I didn't eat more than a few, regretted, bites of food for almost four weeks. I shudder just thinking of it.
I have a lot I want to share including specific stories of my procedures that I've had in the last 18 months, however, I wanted to quickly post the good news of being trach free while the website provider was cooperating with me. As I type I am waiting for my phone to ring to go back to Cincinnati earlier than scheduled. I can't breathe again. So frustrating. I'm ready to get into the OR and not be so air hungry.
Will post more soon. Thank you for checking in on me.