Breath of a nurse with a tracheostomy

Michelle DiGiacomo, LPN

Born and raised in New Orleans, Louisiana, I am 44 years old and divorced with one daughter.  Neither of my parents attended college. My mother was born in the USA but my father is a Cuban refugee who sought asylum here in 1961. I attribute my determination to them.

I attended a local university right after high school, unsure of what I wanted to study. In my senior year, I decided to take a year off to get married. I later learned that I had obstructive sleep apnea.  Because I only had a health insurance policy through school, I went to Charity hospital. I was told that the solution to this problem was a trach to allow me an alternate airway to avoid my obstruction. I was not told about a CPAP machine or offered other less severe procedures.

 After the trach, I was unable to speak for 6 months. I was depressed and certain that this was it for me. No career. No normal life. Awarded social security disability.  When our family moved to Memphis, I found a new ENT to oversee my care. This doctor explored the nature of my obstruction and determined that my over-sized tonsils formed a barrier with my uvula.  After surgery, I was able to reverse the trach. But, just a few months later, I started having difficulty breathing again.  This time, the culprit was scar tissue at the site of the original trach. It was suggested that the first procedure was done incorrectly. Where the trach should have been excised, it was folding back and the outer portion of my neck, skin that I needed later, was removed. This made it bulky and pulled in irregular ways. I endured 5 more procedures in an attempt to correct this stenosis before it was decided that it was a permanent situation.

I will always have to have scar tissue surgically removed every few years.  When I have 50-60% of my airway open, I can comfortably cap my trach or wear a speaking valve.  When scar tissue grows, I have to leave it open to breathe below the problem area.  Other than that, I don't have any respiratory issues.

I could not fathom a job that I could do. Depressed, I thought life was over. I stayed home to avoid public stares and questions. It was not living at all. Then one day it all changed. I was out, forced by my family, and a stranger was staring at me. After the meal, she approached to explain and apologize. She said that she had a baby who has a trach and seeing me out with my family, living a normal life as she put it, gave her hope for own child's future.  In the next few days, I went out more and had similar experiences. That's when I knew that my trach could be useful. My life could be used as a living testimony and example for others.

So, with a tracheostomy, a toddler and no hope of working, I decided that I wanted to complete my Bachelor's degree in nursing. After applying and being rejected from every nursing program in Louisiana, Hurricane Katrina forced me to relocate. The good news is that the move provided new nursing programs to consider.  I applied and was rejected by RN programs in Tennessee, Mississippi, and Arkansas. I was very sure that my trach was the reason for my rejections. I had to find another way!

 I read that licensed practical nurses (LPNs) could get nursing degrees online. I didn't even know what an LPN was but I decided that I had to become one so that I could use that avenue to get to my ultimate goal. I applied and was rejected by a few LPN programs until I found one that accepted me. The Director of Nursing explained all of the reasons that she did not want me to attend and all the reasons that she legally could not stop me.  She  hoped I would forfeit my place for someone who had a chance at success.

I claimed my rightful place!

So began my mission. I met more than a few critics and doubters and hit one brick wall after another but I refused to give up!  I started to think, even if I cannot actually work in the field, I still wanted to know if I could succeed. If I had the stuff to become a nurse. Once I finally got into a program, there was no stopping me. It was there that I got my first support. Not from the instructors, or administration, not even from my husband, but from the patients I met at clinical sites.  Before them, I was pretty sure I was wasting my time. In the hospitals, I was so well received by staff and patients. I was encouraged by everyone at every turn.  I freely answered questions, taught my fellow students from my experience and began to accept this as part of me. It was no longer a problem, just a difference.

I graduated with a 3.86...third in my class!

I have never had any difficulty getting a job or been mistreated by employers.  I have had issues with coworkers. The main issue on the job has been questions about infection control. Once the facility and legal department are satisfied that I am not at any additional risk, I am hired and treated as everyone else. I have not needed any accommodation except when I need time off for procedures.

My first job was at a skilled nursing facility in Memphis. Then, I was hired at a large hospital in New Orleans in the oncology department.  An RN and LPN team provided total care for a pod of up to 8 patients, many receiving chemotherapy, radiation or a bone marrow transplant. I also worked PRN at a home infusion company as a clinical liaison where I primarily did patient teaching. Later, I was offered a full time position with the  home infusion company monitoring transplant patients on inotrope therapy. After that, I worked in nursing homes. I am currently working in a hospital setting in  long term acute care.  Its med/surg with a fairly high acuity. 

Looking back, I was afraid that life would never be the same after my trach. I was right but not in the ways that I first thought.  I struggled with self-image. I was so young and overwhelmed by the medical equipment.  I had to breathe humidified air several times a day, clean my inner cannula, or use disposable ones. To keep the skin intact around the stoma, I had to fight moisture, suction myself and change the actual trach tube every few months. It was so much to learn and so many ways I had to adapt my life around my special needs.

I am hardly qualified to dole out words of wisdom as I am still trying to figure it out myself. I can say that taking the power back was key for me.  If I allowed my trach to steal my future, then it truly would be a disabling condition. I had to carry on as I would have without it. I lost a lot of time being angry about what amounts to a botched surgery that I didn't need in the first place. Once I decided that I would pursue my career and socialize again, this issue could no longer hurt me. I am living my life and enjoying the same ups and downs as everyone else. I also learned that before I could put actions behind my decisions I had to accept my difference. Once it was no longer a problem for me, it would no longer be a problem for anyone else.

My trach is a part of me, like being brunette, short in stature or female, but it alone does not define me.  I am the sum of all of my parts. So you will never hear me trying to deny my trach, hide it or eliminate it from the equation.  Sometimes, people with disabilities, in their fight for equality, want others to ignore their issues in the hope of being treated like everyone else. But we are not like everyone else. One might even argue, we are in some ways better, stronger, more determined, resilient and empathetic. I will use my trach and any tool in my arsenal—everything I am and every breath I take--- to be the best nurse that I can be.

Michelle can be reached at: mdigiacomo0430@gmail.com