Getting a Trach

• Warning Signs of Respiratory Problems
• Mark and Susan
• My surgery
• Cuffed vs. uncuffed trach tubes (hosted on ALS is not Fatal)
• Bill's story (hosted on ALS is not Fatal)

There are warning signs of respiratory problems in ALS that I've heard or of read of: waking up with a headache, daytime drowsiness, and less often vivid dreams or nightmares. If you are having these symptoms, you need to discuss your situation with a doctor and pulmonologist who are familiar with ALS.

Here's what we were told by a pulmonologist at an ALS seminar. Headaches at night or when you first wake up is a typical sign of weakening breathing muscles in ALS. As the illness progresses a point is reached where breathing is too shallow to completely clear carbon dioxide from the lungs. This usually happens at night because our breathing is naturally shallower at night than during the day. When CO2 pools in the lungs it reduces CO2 exchange with the blood, which elevates the CO2 level in the blood. High blood CO2 can cause drowsiness. Also, CO2 is a vasodilator, and dilated blood vessels in the brain can cause headaches. So you wake up with a headache, and maybe a half hour later it's gone because the stronger daytime breathing has cleared the CO2 from your lungs. CO2 retention can be worse if you have lung disease such as emphysema as well as ALS.

Some medical folks may want to put you on oxygen to fix the symptoms, but using oxygen with ALS is not without risk. There are 2 drives for breathing: the need to eliminate CO2 and the need to acquire O2. Your body can become accustomed to a high level of CO2 and "turn off" the first drive. If you go on oxygen your body will sense the higher blood level of oxygen and reduce the second drive. Your breathing may become shallower or may stop completely. If you use oxygen the rate needs to be low to prevent this.

This can also come up if you go to an emergency room with respiratory distress. A doctor who is unfamiliar with ALS may automatically put you on oxygen.

Using oxygen doesn't eliminate CO2. What is needed is full breaths, which requires a ventilator or BiPAP. When I started having morning headaches I went to my pulmonoligist who ran some tests on me and put me on a BiPAP. That cured the headaches.

God bless you on your journey, Wayne S. Phillips

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In '88, Mark started having respiratory crises. He would struggle to breathe and the week prior to placing the trach I actually did some nasal suctioning down into his lungs (no fun). The doctor kept track of Mark's oxygen saturation levels and finally determined that it was time for Mark to be evaluated for the trach.

The morning after he was admitted to the hospital where he was going to get the trach he stopped breathing. They performed an emergency tracheotomy in his hospital room.

Looking back on it now, I would recommend that you seek out an ear, nose, and throat specialist and/or the surgeon who you want to do these procedures [feeding tube and trach] and let him know of your intentions now. The doctors we were referred to didn't know us and that caused some misunderstandings that could have been avoided if we had looked for someone to support us in our decision early on.

They did not stitch down the trach and make it a permanent trach site. This is important because trach changes are extremely painful if you don't have a permanent healed up site to make the trach changes in. In '91 my doctor decided that maybe Mark should have a permanent trach site and sent us back to have this done. (The surgeon was very surprised to hear that Mark was still alive :-\) Anyway, this helped a lot and although trach changes will never be totally comfortable it did simplify things and help keep the chance of infection down.

After they put in the trach they did not want to put him on the ventilator. (They are not in the practice of keeping people on ventilators.) Plus he had pneumonia and I now I think they didn't think he'd make it. After 3 days of reminding the doctors that the ventilator would be his life and we wouldn't be attempting to wean him off of it, they relented and brought in the ventilator. At this time you start working with respiratory therapists. They were wonderful! All of them. I also learned that the weekend nurses in ICU are more fun than the weekly nurses. The nurses were actually all wonderful. It was the charge nurse that I had a hard time with. She was constantly concerned with lawsuits.

I was determined to get Mark home. So the RT's taught me how to do trach cares, circuit or tube changes, and how to do vent checks.

Mark and Susan

Read their general impressions of life on a vent and their daily routine on the vent page.

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I had my trach surgery done on a non-emergency basis, so I could be fairly well prepared. We met with the pulmonologist and surgeon a couple of times each to discuss the surgery. The surgery is fairly minor and only takes 10 or 15 minutes. It can even be done under local anesthetic, but I wanted a general.

I was concerned about not being able to speak after the surgery. My surgeon assured us that I would be able to speak the afternoon after my morning surgery. We made sure that my wife would be in the recovery room to interpret my needs for the nurses. I was out for about 2 hours, and came out of the anesthetic flat on a gurney, which made it hard to swallow. A nurse came over, gave me eye blink codes for "yes" and "no", and asked me a few questions. I had no voice.

I felt claustrophobic when I came to, not because anything was wrong, but because it felt very strange to have the vent breathing for me. I also needed to have the head of the gurney up so I could tuck my chin to swallow, but had no way to communicate. It took a few minutes to get my wife in, and she knew that I needed my head up and helped do it. She knew what yes/no questions to ask to get me comfortable. My neck was quite sore at the trach site.

I was taken to the ICU where I stayed for four days. The first afternoon I could feel and hear a lot of gurgling in my lungs, which really bothered me because I had had pneumonia twice and that was my first symptom. I didn't have the gurgling when I went in for the trach surgery. I needed suctioning about every hour or hour and a half, but the gurgling never fully went away. The gurgling would sometimes make me gag, and the prospect of living like this was frightening. (Don't worry, it got better.) I discovered that I couldn't talk because I had a cuffed trach with the cuff inflated. No one came to deflate the cuff to let me try my voice. When I was suctioned or turned on my side for bathing and changing my trach site hurt a lot. I lived on Tylenol. The first night I was so nervous I couldn't sleep.

My parents came the day of the surgery. My dad made an alphabet chart to aid communication. It was very slow, but better than nothing. After a couple of days my dad made a list of common needs that I could choose from. I recommend that you have such aids before you get your surgery and practice using them. See my communication aids page. Between my wife, a private duty nurse who had taken care of me at home, and my parents, someone was with me most of the day to interpret my needs and help the ICU nurses learn my needs. Nights were lonely.

After a couple of days I learned to distinguish between gurgling in my lungs and the gurgling of water in the vent hose from condensation. I had a lot of discharge from the trach site running down my chest. The third day after surgery a speech therapist came in to deflate my cuff and try a Passy-Muir speaking valve to try my voice. My voice was fairly difficult to understand before the surgery. It worked somewhat but made me tired. I was worried about aspirating so I didn't use it much. On the third day I also noticed that I was no longer conscious of the vent breathing for me.

On the fourth day I was transferred to the long term care unit at another by ambulance. They took me off the vent and a respiratory therapist used an ambu-bag to ventilate me for the trip. It was nice to see the outdoors, even if only through ambulance windows. It was another few days before I got out of bed.

The nurses were concerned about the discharge from my trach site and cultured it. Sure enough, I had an infection which I must have gotten during surgery. No one in the ICU had checked. I got an antibiotic, and the ooze stopped. The constant gurgling in my lungs went away too, and I realized that my infected trach site was probably draining into my lungs and causing the gurgling. After the infection cleared up I only needed to be suctioned 3 or 4 times per day.

I found out that one reason my trach hurt so much was that the surgeon sutured the trach tube to my skin! The sutures were removed about six days after surgery. It was two to three months before the site was really healed. Every time the vent hose was moved or I was turned my trach tube would irritate the site and that slowed healing. Two weeks after the surgery I was switched to an uncuffed trach and had my voice back. Being on a vent gave me a greater volume of air to work with so my voice was louder than before the surgery.

God bless you on your journey, Wayne S. Phillips


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