I’ve had the Trilogy 100 for about 3 months now. I wouldn’t want anything else. Now I can’t say I did my research and made the decision after lots of comparisons like with my power wheelchair. This is because I’m at a great
ALS clinic where they stay on top of all patients and take action at the right time. It was my January 2012 ALS clinic day at Emory. When the Respiratory Therapists came to my room for the usual Forced Vital Capacity (FVC) testing that you get at every visit. I told them what I had been experiencing. I was having headaches, especially when I woke in the morning. I also woke about every morning with a feeling of needing to take a deep breath. I would sit up straight as possible with my fists against the mattress and breathe in as hard as I could. For about the last 3 seconds of the breath I would feel a crackling, then it wouldn’t do it for the rest of the day. It made no noise and my husband tried to feel the vibration I was explaining and never could. It wasn’t a crackling like phlegm per
say, like you might have with acute bronchitis. After I had that first deep breath for the day, no more crackles. Tony called Dr. Glass’ nurse and he recommended I see my primary doctor and get a chest x-ray to be sure there was no infection. It came back perfectly clear and nobody thought much when I explained my crackles. Right about the same time I was also beginning to notice a feeling of being out of breath with less exertion than usual. The distance of walking became shorter before I would need to catch my breath, and also during conversations it started becoming sooner that I would sound a little breathy and need to stop for a minute or talk even lower.
These weren’t serious, “Help, I can’t breathe situations,” but when you have ALS you notice these things, and in a different light. You’re very aware that losing the ability to breath and subsequent cases of pneumonia is usually what kills you. I pay close attention to my body while trying not to over think things. It’s not always easy with this scary disease. I gave thought to possibly anxiety being the culprit, but I knew it wasn’t causing the crackling lungs at the end of my first breath of the day, and it became very apparent I needed to take breaks sooner than usual from any exertion, or much talking. Others noticed too.
I told the Respiratory Therapists it wasn’t real bad, but they thought it needed to be looked at closer. They chose to go ahead with some extra testing. They felt it should be done and they believed Dr. Glass would feel the same, so they started with it. The main difference was in my breathing tests while lying down. This explained the morning headaches and even the first breath crackle that had only brought strange looks before when trying to explain to others. They explained that while lying down and sleeping, I most likely was breathing shallow and the lower portion of my lungs were collapsing. They explained my first crackling breathe is when my lungs were opening back up for the day while I breathed deeper. The headaches were likely because during sleep, breathing muscles relax more than when awake and if not breathing in, and especially out correctly a buildup of Carbon dioxide (Co2) will cause headaches. In end stages this can be a cause of death because of carbon dioxide buildup in the blood. Severe Co2 poisoning will result in irregular heartbeat, unconsciousness and death. Respiratory issues are taken very serious in ALS. That’s one discipline you will see at every clinic visit.
When I had my FVC tested sitting for the first time at Emory, the day Dr. Glass confirmed my ALS diagnosis, I tested great. You get three chances to blow out and three to suck in air and they take the highest numbers for each. My first was 101. I thought it would be a long time before any decline. The next visit I think was in the 90s, then a couple 80’s started showing up but I still made a low 90s result. My visit in January was a little shocking when I saw that first result in the 70s. I’m not positive, but I think I made it to mid 80s with my last of three. The real shocker came when I was tested lying down. You can’t lift your head for this and I ended in the low 60s. That not only shocked, but scared me a little. I’ve read of people being in the 30s, 20, and even teens though. I know the lower your FVC score is the more likely you are to be turned down for certain clinical trials and there is a window of opportunity before it gets too low to have a feeding tube placed also.
My trilogy 100 has changed how I feel so much. I do still get really fatigued, but it’s different. I know you can’t regain muscle lost from ALS, but you can slow the loss down and I believe this has been the case with me. I’m feeling good about my FVC scores being tested in a few days when I go for my Validation of bio-marker study. I no longer wake with a headache every morning, and I don’t have the crackles at the end of my first breathe in, and the settings on my Trilogy 100 are still set relatively low.
That’s how I ended up with the Trilogy 100. Now I’ll tell you a little about this amazing device. First of all it is capable of providing invasive and non-invasive therapy. So, if you start off using this device and progress to the point of needing and choosing to have a tracheostomy, you can still use this instead of getting used to a completely different device. It also only weighs in at 11 lbs, so it’s very portable. It fits nicely on the back of a power wheelchair. It includes six hours of battery life, so in the event you’re out and about that’s a long time. You can also purchase extra batteries. It’s very easy for your doctor to keep up with how it’s working for you. It has a simple SD card that your Respiratory Therapist comes to take and replace every couple of months, or whatever is determined necessary for your case. You hit one button to turn it on and two to turn it off. You can’t mess up. It’s capable of several modes of therapy depending on patient needs, but can be left with only two settings for the patient. Without trying to talk over my head mine is with AVAPS setting and BIPAP setting. BIPAP is what is commonly prescribed for ALS patients. Most people are familiar with CPAP – Continuous Positive Air Pressure. Then there is BIPAP – Bi-level Positive Air Pressure. BIPAP allows you to breathe out easier by easing the air pressure when exhaling.
I’m not comfortable explaining what AVAPS setting means except it is: Average Volume Assured Pressure Support. You can learn more by clicking this link. I can tell you I prefer it much over the BIPAP setting. It senses what I’m going to do and what I need like magic. On the BIPAP there is more of a struggle to get my breath in sync. This has been my experience, and this is the main reason I’m so thankful I wasn’t prescribed a standard BIPAP. This may be different for another person. Since I don’t like the BIPAP setting, I’ll be asking for a prescription for the sip and puff mode. This is a great feature that allows you take a helpful breathe as needed through a harder plastic connection, best way to explain is you take a sip of air as needed. It won’t constantly blow air in this mode. I’m looking forward to replacing the BIPAP with this setting.
I have and recommend a humidifier. Dry air will dry out your sinuses and can be uncomfortable. I had to wait about a month on the humidifier and it made a big difference in comfort. The most dreadful thing, no matter the type of device is finding the right mask for your face. I’ve tried very hard to find and like a full face mask that works well for me with no luck. Its awkward head-gear and the plastic pushing on the forehead begins to really hurt after a couple of hours no matter how soft and I haven’t found one that doesn’t start leaking within two hours either.
My favorite around the house mask is the F&P Pillairo. The nasal pillows are very comfortable and create a great seal. It’s a one size fits all non adjustable band that goes around the head. I thought that would be a problem but I just put it behind my ears and it works like a charm. If I’m in my bed I can just let it hang from my neck between uses. It’s not very pretty though. My next favorite is ResMed Swift FX for her. The nose pillows aren’t as comfortable, going out it’s worth it to me because it covers your face the least. I also have a ResMed SoftEdge Mirage FX. This completely covers the nose. It’s not nasal pillows. I use this occasionally at night. It creates and keeps a good seal and is comfortable. The only reason I don’t use it more often is laziness really. It does involve more time getting it on. When using it I have to also wear a chin strap so that my mouth won’t open in my sleep. At first I didn’t like that because the strap makes my teeth touch in an uncomfortable way. I figured a way to solve this by buying an inexpensive mouth guard you can find at any drug store. You heat it and let it mold to your teeth. It’s a great way to get the same benefits of a full face mask at night with better comfort. I only use this on nights I feel like taking the extra time, which isn’t much, but it is compared to the slip on nasal masks. I’m sure I’ll be trying many more masks, especially as I need the air for longer periods of time.
This has turned into a much longer post than I planned for so I’m going to stop here. I hope this is helpful to someone.
Please visit my website: http://thealsexpress.com
Until next time, take care,