……………….Try saying that 5 times really fast.
Before reading this post, you might find it useful to read the first two of paragraphs in the “My Asthma” section of my blog. This will give you a little background as to why my dyspnea (shortness of breath) is so difficult to manage. Along those same lines, Rick over at the Respiratory Therapy Cave, does a great job of explaining how asthma can sometimes turn into COPD.
On Thursday I had my first appointment at this new service called “Symptom Management” . The clinic is basically an extension of the Palliative Care dept over at the UCSF Mt Zion campus. Rather than end-of-life care, this particular specialty focuses on treating the symptoms that cause suffering, i.e. breathing problems, pain, fatigue, stress, etc, regardless of the prognosis. I was referred there for my chronic and worsening dyspnea. Don’t get me wrong, I’m not giving up on traditional asthma care, but at the same time I don’t want to fool myself. I know that this disease will eventually kill me . In the meantime, I wanna stay not only as physically active as possible, but ALSO as comfortable as possible. Which for me means breathing easier.
Most of my dyspnea (the sensation of breathlessness), stems from a condition called air-trapping. Pretty much the hallmark of obstructive lung diseases ( COPD, emyphysema and sometimes severe asthma), air- trapping occurs when airway obstruction due to chronic inflammation and/or loss of elasticity, causes air to become trapped in the lungs during exhalation. In other words…. I can’t exhale completely!
For an example of what air-trapping feels like. Take a full normal breath in, then try to exhale it out through a tiny straw (something like a coffee stirrer). See how long you can keep that up. You now have a sense of just how hard the work of breathing becomes for someone who has air-trapping . This is what my breathing feels like on a daily basis.
Things get even worse when my airways start getting twitchy, because then, in addition to the air-trapping symptoms, I also have to deal with my smaller airways closing up (bronchospasm). Having both of these 2 distinct symptoms at the same time becomes very troublesome, because it’s often difficult to tell which is causing which. Dyspnea associated with air trapping can most definitely make you feel uncomfortable, but the dyspnea that is caused by sudden or severe bronchospasm, can be potentially fatal.
In any case, the bottom line , is that dyspnea causes a lot of suffering and can make your life absolutely miserable.
For the past few years Ive been involved in several pulmonary rehab classes and research studies where they show you different techniques to help control your dyspnea. Some of what they teach helps, but most of these classes are geared towards people with COPD and Emphysema where having reactive airways is usually not an issue. There are very few resources out there specifically designed to help chronic severe asthmatics deal with the complexities of the disease and type of breathlessness they experience. The only thing that’s really helped me so far, is a combination of relaxation techniques, anti-anxiety meds ( ativan) and mild opiates.
So anyways back to Thursday’s appt,
The symptom management doctor (who was really cool by the way) and I, both agreed that while my disease is pretty severe, that my quality of life is still quite good and that I should continue on with my current asthma action plan…even if it calls for future intubations! As far as my dyspnea goes, he recommended that I increase my vicodin dose to at least 4 times a day for better nighttime coverage. If that doesn’t work, he wants to try me on methadone ( yup, the drug heroin addicts use when detoxing ). I told him I would think about it, but I also made it clear that I didn’t want to take any medications that would effect my ability to exercise.
We also discussed “advance directives” and what would I want done ( or not done) , if I became critically ill and not able to communicate. For me this is mostly as issue of how long I would want to be on a ventilator, if there was no hope of recovering.
Im glad I went to this appointment. I think I came away a little less apprehensive about the whole issue of palliative care and what it implies. Anything that helps reduce the suffering that goes along with chronic disease ,is certainly worth considering as a treatment option.
In part two, I’ll talk about the impact that dyspnea and air-trapping have on my ability to exercise. For me, that’s the real dilemma.