In April 2008, I had not felt well. I attributed it to the seasonal allergies and asthma that always seemed to affect me worse during the spring in the suburbs of Atlanta, GA, USA. My primary doctor called in steroids and I was taking them. All of a sudden, I just couldn’t breathe. My husband rushed me to the hospital. I had double pneumonia (both lungs were completely filled with fluid and were totally white on X-ray). They had such a hard time getting my breathing regulated and I was apparently struggling so that they put me into an induced coma and told my family it would help me get the needed rest and would help them to get my breathing problems under control. Said it would last about a week. I was in a coma, in ICU for 90 days! During this time, I developed ARDS (Acute Respiratory Distress Syndrome), Internal MRSA that attacked my heart and lungs, Sepsis, and almost had Renal Failure. I was given amnesia medicine so I wouldn’t struggle with PTSD. I was 47 years old. I then went through intense rehab….being hospitalized for another 45 days to come off the ventilator and to learn to walk again from being in bed so very long. I came home on a walker and with a support belt for someone to hold onto while I walked, continued PT at home for months, and came home with and stayed on oxygen for 2 years. When I went to the Pulmonologist, he said I now have Moderate Emphysema (on a cat scan) but breathing tests showed Mild Emphysema. I couldn’t drive for about a year after my hospitalization. It took 2 years or more to do things that required fine motor skills, i.e, cutting my own meat, handwriting, etc., For the first year or two , I was sorta “non affect” . This was a striking difference in my normal outgoing, vocal, energetic self to my family. I have regained my “personality” back but do feel the drugs used during this time to keep me in a coma for so long have had a major negative impact on me. Miraculously, I survived all of that but the meds and all that has happened since 2008 has added 30 years to my physical well-being. I am not the person I physically once was and I never will be.
Six months after coming off oxygen, I had trouble breathing. I went to my ENT and he immediately put me in the hospital and put a trach in. It stayed for a few months and then he removed it. He performed a dilation and that only lasted a few weeks, I was once again trached. When the trach came out after a few months, he performed another dilation. Again, after a few weeks , I was struggling again to breathe. He said he had done all he could do, gave me a year to live, and left me with that prognosis. I do believe this is where many ENT’s fall short for treating people with severe Tracheal Stenosis (in my case caused by length of time on ventilator or from injury when being intubated), I had made it this far so I couldn’t just give up. I realized my condition was so severe that even doctors were not able to handle it. That is when I went to Emory University Hospital , in Atlanta, GA to the Department of Otolaryngology and I was seen by the head of the Dept., Dr. William Grist. He couldn’t perform surgery immediately due to a travel schedule already in place but kept me in the hospital on a tank of Heliox to keep me breathing until he could perform surgery. He said I was not a candidate for resection because the stenosis was everywhere in my trachea….there was not a way to cut the bad section out and put the two good sections back together because the whole trachea was severely affected. He would have to perform a reconstruction surgery and he did. He put 140+ stitches in my windpipe as he attempted to cut away the scar tissue that was causing so much trouble. I struggled during recovery to breath so he took me back into surgery and performed a third tracheostomy. I also had double vocal cord paralysis. I have since regained the use of one vocal cord. My voice is deep and husky and I can no longer scream (i.e. calling my son in from outside, cheering on a ball team, etc.,) nor can I sing. I can only be heard by someone who is within 2 feet of me. After this, he tried so many things to get the trach out. He removed it several times only to have to put it back in within 24 hours twice. I had so many surgical procedures over this two year period (14 I think, I lost count). He tried different types of trachs. The T-Tube was nice, as I could actually physically laugh for the first time in a long time! But, it did not last either. It had to be removed and I went back to the 6″ Shilley with disposable inner cannulas. I had a home nurse who came during this time twice a week. He had to perform another reconstruction surgery to remove scar tissue caused by the numerous surgeries and time with a trach. He last performed a skin graft….taking cartilage from my ear and putting it in my trachea. I do believe this was one of the most significant things to aid in me being able to successfully have the trach removed. In October, 2012 he removed the trach and it has somehow (again miraculously) stayed out since. I have had problems since. Went to the ER again in Feb. 2013 and was put in ICU because I had no airway once again. They luckily found the problem to be a simple infection on my working vocal cord and gave me intravenous steroids.
Living with TS is like being trapped in your body! You may have the desire to do things but physically cannot. Simple chores that I once took for granted are now monumental. I conserve my energy by doing only what I have to do in day. I can only walk 50 feet before needing to rest. There really seems to be no true recovery and you have to learn how to pace yourself so that you can accomplish simple things that ae necessary to live. I would love to see research done in ways to make quality of life with TS better….if it is even a possibility. I , and I know others, have to face this and it is probably the hardest thing and one all doctors should realize….that we are no longer abled bodies!
They recommend that I be scoped every two months to prevent problems quicker and to determine or just monitor the stenosis. It is now May 2013 , and I am scheduled to go back in but I no longer have medical insurance so I am unable to go and be checked. I do hope that as much time and emphasis and money can be thrown at this difficult condition that totally changes one’s life in basically every way possible.
I am grateful to share this story as I want people to be aware. Thanks for your efforts with the new website! I am so grateful to see work being done on behalf of the small (world-wide) number of us that suffer!