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Ventilator-Assisted Living^©

Fall 1994, Vol. 8, No. 2

(continued)

From Trach-Free to Trached
to Trach-Free Again

Nancy Quinn, Saint Petersburg, Florida

After returning from my honeymoon in September 1952, and not feeling well for several days, a diagnosis of poliomyelitis was finally made. I began a 14-month hospitalization at Haynes Memorial Hospital in Boston, embarking on a new way of life, far from what my husband and I had planned. Soon after hospitalization, I was placed in an Emerson iron lung, totally paralyzed. The usual forms of treatment were initiated: hot packs, physical therapy, and eventually weaning from the iron lung.

In January 1953, a rocking bed was introduced into the therapy program. For the next few months, I alternated between the lung and the rocking bed. Eventually I adjusted to sleeping on the rocking bed. In August 1953, my doctor said if I could sleep two months without the rocking bed, I could go home. To achieve this, the dip of the bed was gradually reduced, and by September, the bed was turned off completely. The weekend after Thanksgiving 1953, 1 was able to go home, free of any respiratory assistance.

I was admitted to Warm Springs for intensive rehabilitation in the spring of 1955. During this time, physical therapy helped me strengthen the partial use of my right arm and hand, and I learned glossopharyngeal breathing (frogbreathing). My vital capacity at that time was between 600-700 ml, and I began using a cuirass and Monaghan ventilator for one hour each day. I left Warm Springs at the end of 1955.

During the next two years, I experienced episodes of CO2 build-up. I was hospitalized and used an iron lung. After the second experience, my physician recommended using a cuirass for sleeping and resting. No serious illness occurred until 1960, when kidney stones became troublesome and had to be surgically removed. An iron lung was used for post-operative recovery, and after three weeks, my incision had healed enough to return to the cuirass. I also started using a blower to help keep the diaphragm stretched and functional.

In 1984, 1 began to experience extreme fatigue. My general practitioner suggested a consultation with Dr. Neil Feldman, a local pulmonary specialist. At this time, I switched to a larger cuirass, and at night the negative pressure was increased and the rate was decreased. This seemed to solve the problem until September 1987, when I was hospitalized with pericarditis. Because of the intense pain, I could not tolerate the cuirass, and CPAP via a nasal mask with a PLV-100 ventilator was introduced. Being a little claustrophobic, this was a difficult adjustment. However, sleeping was more restful, and after recovering from the pericarditis, CPAP became my permanent sleeping device.

In February 1990, bladder cancer required hospitalization for laser surgery. After much discussion about anesthesia, the physicians decided to use an epidural. CPAP plus oxygen was used during the one and one-half hour surgical procedure. My attendant was allowed into surgery to set up and operate the CPAP. For the next three years, several additional laser procedures were required to control excessive bleeding and more tumors, but in January 1994, my urologist decided the bladder would have to come out or the cancer would spread. Since this was a four- to five-hour procedure that included a hysterectomy and the creation of an ileal conduit, my medical team felt a tracheostomy was necessary. After 43 days in CICU, I returned home with a urostomy appliance, the trach still in place.

I was extremely disappointed, discouraged, and depressed that the trach could not come out; I could not speak. While at home, I attempted using the Passy-Muir Speaking Valve, but was not successful, thus increasing my frustration and depression. The trach care and constant suctioning, sometimes 12-15 times per day, overwhelmed me. Still Dr. Feldman maintained his position, saying I would live longer with the trach than without it. I thought about his words for several weeks and finally realized he was not saying I could not live without it, only that I could live longer with it. I felt the quality of my life, no matter how short, was much more important than a long life of being miserable. I began to research the pros, cons, and alternatives to tracheostomies.

I do not remember why I started taking the inner cannula out during my bath and exercise periods, however, it seemed much easier to breathe, which surprised me. The secretions seemed to be my major problem. Since the trach was causing the secretions, according to popular medical literature, it seemed logical to me that if it were removed, the secretions would no longer be a problem.

I wrote to Dr. Feldman, pleading that we discuss the possibility of removing the trach. To his credit, he agreed, and on June 13, 1994, I was again hospitalized in the CICU for the decannulization process. But my blood gases were too low. These finally stabilized, and on June 22, after applying a nasal cannula for oxygen and auctioning once more, Dr. Feldman painlessly extracted the trach. A gauze was placed over the stoma and my old cuirass put back on. My voice started to get stronger almost immediately. CPAP was again started during the night. Blood gases remained steady. During the next few days, I used either the cuirass or the blower, and sometimes nothing. I found I could eat and drink quite comfortably, and it was wonderful to be able to speak again.

Fortunately, the cuirass did not seem to compromise the efficiency of the urostomy appliance. In an effort to bring up secretions on my own, rather than be suctioned, I alternated between frogbreathing and the blower, with manual assistance. The stoma closed completely within a month, and so far there have been no further complications.

In retrospect, the tracheostomy, though necessary at the time, was a nightmare to me, even to the point where death seemed preferable. I realize many people manage well with their trachs, but it was not for me. I would advise anyone facing surgery to be prepared and to have a competent respiratory physician and a good respiratory team who know neuromuscular disease. Asking the right questions and understanding the answers encourages a good team effort and confidence in what is going to occur.

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