The last few weeks have been nuts. With a rash of wildfires throughout the area and other health issues to deal with, I got side tracked and forgot to post this.
Back in August I had a semi brief, but stressful stint in the hospital. My breathing was being made worse by GI issues that I had been suffering from for several months. But, there’s a lot more to this story than just the abdominal bloating setting off my asthma. Facing a potential 49th intubation ( yes, you read that correctly), the first day in the ICU was tortuous and my stress levels were through the roof. The bloating and distention was making it difficult for me to inhale and the asthma was making it difficult for me to exhale. I was miserable.
Worried that I was headed in the wrong direction, and after many failed attempts by student doctor, they finally got an A line in me and drew ABGs every hour or so. At first my gases weren’t too terrible, but then after a several hours on BIPAP, my PCO2 started rising and I was almost certain I would end up on a ventilator. Because I know my body well, and because I know how much respiratory discomfort tolerate, I was told to please let the medical staff know in advance if I started to “tire out” (basically, the asthma code words for… it’s intubation time). It took nearly 12 hours of majorly labored breathing for me to reach that point and I didn’t know how much more I could take, so I reluctantly told them…. “Im getting tired”. With that said, I could see and hear people buzzing around getting equipment and a ventilator ready. I thought for sure that within a matter of minutes Id be headed down that all too familiar path of falling into a medically induced coma, waking up several days later confused and not knowing where I am. Ah, but that didn’t happened, I wasn’t intubated. Instead, the senior resident came in and said…I know you’re working hard to breath, but let’s wait a little longer. Your blood gasses are not great, but not horrible, your PCO2 is only 62. Let’s see if we can maintain you on BIPAP for now and we’ll continue to check your gasses.
Maybe it was because they didn’t know me or were hesitant because I had been intubated just 3 weeks earlier, but in my state of mind at the time, their wait and see approach and their attitude about how sick I was, seemed dismissive and it rubbed me the wrong way. I fired back by telling them “just make me a no code and no intubation then” (meaning I don’t want anything done, including intubation if I get worse)
I felt as if they didn’t care anymore. They know I have severe lung disease that will never get better, so why do anything? Again, I wasn’t exactly thinking clearly at the time. Of course looking back on it now, they definitely had valid reasons for not wanting to rush into shove a breathing tube down my throat. Knowing the damage another intubation might cause to my upper airway, or the fact that I have a history of post extubation delirium, this was obviously a road they didn’t want to go down, unless they were absolutely sure there was no alternative. I just wish they would have told me up front and not insisted that I tell them when I think Im tiring out.
Ok, let me pause here for a second. For those who might be unfamiliar with blood gas values, a rising PCO2 ( carbon dioxide in the blood) during a bad asthma flare usually indicates that the work of breathing is getting harder. As a reference point, a normal PCO2 for most people is around 35-40. During the early phases of a severe asthma flare, a person will actually hyperventilate (breath faster) to compensate for their shortness of breath, which could initially lower the PCO2. But, as the attack progresses and the person becomes tighter and more short of breath, it becomes increasingly more difficult for them to blow off the excess CO2 and a results the PCO2 will continue to rise. Eventually the work of breathing becomes overwhelming and the blood becomes dangerously acidic. They call this Respiratory Failure and if it continues long enough the person could stop breathing all together (respiratory arrest).
Back to my story. Thankfully, after 18 hours on continuous Albuterol, BIPAP, steroids and a ton of Ativan and Fentanyl, my airways were finally starting to open up, I became less anxious and my ABGs started to improve. The threat of intubation was now off the table, but with my emotions flying high I was not a happy camper. I was still pissed off at the resident doctors and wanted to the leave the ICU.
Anyways, over the course of the next few days my breathing continued to improve clinically and I was transferred to the stepdown unit with talk about going home soon. Then , and Im not sure if it was me or one of the doctors, but the question came up, what made the difference? and would the outcome of this exacerbation have been any different if I were intubated? How is that I did so well without intubation this time, when just two weeks ago I ended up on a ventilator for an exacerbation I felt was less severe? Of course these types of questions brought up even more questions like, why do my symptoms not always jive with my numbers? Is anxiety fueling my symptoms or is something else going on in my lungs that we don’t know about?
To see if they could solve that mystery, they asked if I wouldn’t mind staying in the hospital for a couple extra days so that they could some tests. First the Interventional Pulmonologist on staff ordered a CT scan of my neck and upper chest to see if my upper airways were collapsing inward when I took a breath in or out, a condition called bronchomalacia. The results came back negative, but he went on to ask me if I would consider having a tracheostomy put in, to avoid further trauma to my vocal cords. Next, they had the ENT doctor scope me again to see if my vocal cords were acting weird (a condition called VCD) or if scar tissue had reformed since the last surgery. While he did noticed some paradoxical movement of my cords, which is common for people with posterior glottic stenosis, he didn’t believe it played a huge part in triggering my exacerbation. The amount of scar tissue was also unchanged and my airway sufficiently patent.
With no clear explanation or evidence from these tests as to why my breathing gets so bad and why I end up in the ICU so often, it was time to get all the big minds involved in a brainstorming session to see if they could figure out whats going on with my lungs, throat and everything else. So my primary Pulmonologist arranged for the ENT doc, the Interventional Pulmonologist, the GI specialist and the General Medicine doc to meet up at my bedside the afternoon of my discharge.
They had to delay the start of the meeting a couple times, but the fact that they were able to pull this off at all in a such a busy hospital is pretty amazing. So what emerged from this meeting is the following.
First and foremost, No tracheostomy! ….at least for the time being. Can’t tell you how relieved I am about that.
We all agreed that the focus now is to:
#1) Prevent intubations whenever possible, as they, and hospitalizations in general, are taking a huge toll on my body. But also not to under estimate the severity of my exacerbations or avoid going to the hospital for fear of being intubated or not being intubated.
#2) To keep a close eye on my vocal cord issues and see my ENT on a monthly to bi-monthly basis, so that scar tissue can be removed before it interferes with my breathing.
#3) See the lung transplant pulmonologist for recommendations on how to best manage my BO (obliterative bronchiolitis) and the associated air trapping.
#4) Find a good psychologist to help me deal with my hospital related PTSD. I knew I was depressed and somewhat anxious, but I had no idea that frequent ICU admissions and could be the cause.
#5) Stay on top of the GI problems.
My two cents in all this, which I shared with the group. is that I do my best to stay as healthy as I can. I exercise, I eat right, and avoid as many triggers as possible. When I start flaring, I bump up my meds and self treat at home the best I can for as long as I can. If shortness of breath starts to make me feel anxious, I deal with it the best I can with medication, relaxation and mindfulness techniques. The fact is, my lung disease is very complex. Not only do I have very severe asthma, but I also have Obliterative Bronchiolitis, which causes a lot of air trapping and which makes my asthma symptoms feel worse. I also have posterior glottic stenosis, so not only do I have lower airway problems, but upper airway issues as well. When these conditions act up simultaneously, things can deteriorate really fast. And those are just the respiratory components. Add GI bloating issues which can amplify breathing discomfort, and some PTSD from spending so much time in the ICU, it’s no wonder why my exacerbations get so out of control or are so difficult to manage.
Just a side thought and to educate those who might not know, how do you know when it’s to intubate a bad asthmatic and put them on a ventilator? I mentioned my blood gasses earlier, is there a magic blood gas number that tells the doctor, hey, this person needs to be intubated ? Well, that’s where things get a little tricky. For asthmatics a PCO2 over 45 is considered high, but for someone with COPD it might be 60 or 70 or even higher. While blood gasses are certainly crucial, it’s ultimately a matter of how the patient looks, how hard they’re struggling to breath, what their blood gas numbers and other lab work values are, chest xrays, cardiac status, blood pressure, the outcomes of previous exacerbations, co -morbidities and the experience of the medical staff in dealing with severe asthmatics. Intubation, especially for asthmatics is never taken lightly. The potential side effects of intubation and being placed a ventilator can cause even more problems.(I should know, my glottic stenosis is the direct result of too many intubations). So obviously there are a lot of things for the doctors to consider before taking this big step. In many institutions, including the one I go, the need to intubate an asthmatic is considered a near fatal event, and as such, is only done as a last resort.
While I hate being in the hospital, this time it was a learning experience for all involved. Im blessed to have access to good medical care and a medical team who works together for my benefit.