By Dee Storey
December 15, 2002
I am going for surgery at the University of Michigan and I still do not have everything ready. Laundry is in the washer, dishes are in the sink, the trash needs to be emptied, and I need to make a run to the post office with last minute packages…the holidays are around the corner, as everyone knows. Every now and then I pause to think about how I got to this point where I would be going to the University of Michigan for surgery. Hmmmmm… a lot of decisions. A lot of information. A lot of support.
I was in ARDS crisis in April/May 2000. I had never heard of ARDS, my family had never heard of ARDS, and my friends had never heard of ARDS. I met the ARDS community on the Internet and I learned so much about what to expect during my first year of recovery. All those e-mails in the first year, especially those from Eileen, were so reassuring that, YES, there was a life after ARDS. Okay, a different life, but I have learned that different is not always bad.
I first met an ARDS family in December 2000 in the same waiting area at the University of Michigan where I have waited as a patient in 2002. Gina was a patient in ARDS crisis at the U of M. Her husband and parents were in the same waiting area that I have walked through 5 times on the way to surgery. Gina did not survive ARDS and her death was so very, very sad. Every time I sit in that area, I always remember how kind Marshall and Gina’s parents were to me.
After ARDS, I ended up with tracheal stenosis, a closing of the air passage due to scar tissue. The scar tissue formed in the area of my windpipe where the cuff of vent tubing had been. In this day and age, after a person has been intubated as I had been due to the ARDS, this complication occurs in only a very small number of individuals. I just happen to be one of those individuals. But come to think of it, I was among the small number of people who came down with ARDS and survived. The scar tissue refuses to be manipulated by bronchial (sp) dilation. The more the tissue develops and bounces back, like a tight rubber band, the more difficult it is to breathe. The surgery on Monday will be what is called a trachea resectioning. In this surgery, the doctor removes the part of the trachea that is scarred and reconnects the windpipe. YIKES!
It took a lot of decision making for me to come to this point. I did not make this decision hastily. I have learned a lot about making medical decisions after ARDS. I have often said that it was “easier” when my brother made all of the decisions for me while I was in a coma. But, now it’s my turn to make the decisions. I had help. Help from friends, medical personalities, people I don’t know, and family.
I know that I have been able to make informed decisions based upon information and support from those in the ARDS community. I first learned that there was such a thing as tracheal resectioning from Sue in Chicago. Her husband, an ARDS survivor, had been examined for tracheal stenosis. She passed on the information to me and I looked it up on the Internet. I found the most interesting descriptions, illustrations, diagrams, and even short videos at the University of Iowa Medical School. WOW! It is really amazing to take a tour of a trachea while sitting at home!
I had been told that there was NOTHING that could be done about my tracheal stenosis. I did not know any better so I believed that NOTHING was what would happen.
So from 2000 until June 2002, I thought there was nothing that could be done to fix the stenosis. However, one day in June 2002, I was in a doctor’s office (not my physician during my ARDS crisis) when the doctor and her resident said they thought that NOTHING seemed like a really impossible word. The Resident, who seemed only a few days older that Doogie Howser, said, “that if I were his mother, he would search the earth to find a way to have the tracheal stenosis fixed.” The doctor referred me to another physician who referred me to a surgeon at the University of Michigan. Once I learned that I was going to be evaluated at the university, I started to do my research: reading and asking questions and searching for information.
I think we have all learned that nothing in the medical world moves quickly…but in my case, it seemed that once a decision was made, everything moved like lightening speed! I saw a new ENT in June and a surgeon in July! WOW! It seemed, in a very short span of time, that there WAS something that could possibly be done. I had a lot of questions to ask. I knew I was able to ask good questions over the last 6 months because I was armed with information and armed with advice from people in the ARDS community. Many in the ARDS community have been there and have gone forth and sought out second and third opinions. I know that information and the support have made it possible for me to try to maintain a positive attitude about the tests, the procedures, and, now, the upcoming surgery.
A neighbor teenager, Tommy, has often reminded me that I am helping to train all sorts of medical people. I know that he is right. Sometimes his kind words help when I am going from one office to another and from one lab to another and from one nurse to another. I am learning and they are learning. There is some comfort in the sense of a cycle.
I know that the information from the University of Iowa Medical School has helped me to recognize the technical terminology. I know my surgeon at the University of Michigan has helped me by treating me as an informed patient…a patient with knowledge and fears.
My family physician has helped me by providing medical and personal support. The nurses have helped by being the first-line of medical people I talk to on the phone in the office. All of these people have made me laugh. The University of Iowa has helped me study and to see just what is going on. Those in the ARDS community have helped me with the notion that I can get through this because I have the support. I have the support online. I also have support from those who have been in hospitals and in DR offices and in waiting rooms. I am especially lucky because I have many wonderful friends where I live. They have given emotional support, cooked meals, and sat with me during medical procedures. I also know that wonderful people, like Irene in Saginaw, have put me on their prayer chains I understand that there is frequently a window of opportunity for most things. With ARDS, there is one for 24-48 hours when our bodies had some insult and went into ARDS. With surgery, there is also one. I decided to go with my window of opportunity because I have a real sense of what the possibilities are given the surgery. I understand the dangers and the problems, and I do have fears. However, I also know that I have people all over the United States cheering me on. I cannot wait to tell you about the process and the recovery and the results.
Hmmmm… Think of Bob The Builder. His slogan: Can We Fix This? YES WE CAN!!