I don’t have to tell you how important it is to develop a good relationship with your pulmonologist and other doctors, but its also important to establish open lines of communication with them especially when you have a disease like asthma. Chronic severe asthma is not a condition that just requires the occasional check up, it’s often a constant battle just to stay alive and out of the hospital, and for that, regular contact and follow up with your medical team is essential.
Many asthmatics are referred to a pulmonologist for their initial diagnosis, and then will follow up with them from time to time, but for many of us who struggle with the disease on a daily basis, the pulmonologist often becomes our surrogate primary caregiver and our preferred point of contact when we get sick. Well, in this day and age of overcrowded and under staffed specialty clinics and doctors officed it can be difficult to maintain that open a line of communication if we can’t see them in person every time we get sick.
Most Pulmonologists, at least at the larger teaching institutions, are busy people. Many of them fill multiple roles, such as Critical Care Medicine specialists working in the ICUs. Some have teaching roles as well, and some are involved in their own medical research. Needless to say, it’s not always easy to see them in person when you need to. Im sure I’m not the only asthmatic who gets sick on weekends or after hours.
Thankfully, more and more healthcare organizations are providing electronic access for their patients to view their personal medical records and communicate with caregivers. To their credit, Kaiser Permanente who I worked for several years, has had this kind of technology in place since the mid 1990s. From scheduling medical appts, to reviewing lab reports, to requesting medication refills to communicating with my doctors, I use my medical apps on a near daily basis, and rely heavily on them. I love that it at least gives me the sense, that I have some control and say-so over my own healthcare and that there’s pipeline to my Doctors ear, albeit a heavily filtered one.
Which brings me to today’s communication with my pulmonologist, which Ive posted below. As you can tell by reading some of the message, I’d been having a pretty rough time lately, and wasn’t sure it I would end up in the hospital because of it, so I wanted to keep my lung doctor in the loop. I see him pretty often, every couple months on average, either in the clinic or when I’m a patient in the hospital. But because my condition is so complex and ever changing, a lot can happen in a short period of time. In fact, if its been a long time since he’s heard from he, he’ll call me at home.
So why is this kind of private messaging with your doctor important for me? Well, If I do end up in the hospital, he’ll know about it in advance and will be in a better position to inform the doctors who will actual be taking care of me about my medical history and any quirks I might have(and trust me, I have many). If I don’t end up in the hospital, he might be able to recommend treatment options for self care at home. In any case, this kind of back and forth keeps everyone on the same page.
It’s also important to remember, that we’re not the only patients that our doctors see. They have dozens, probably hundred of patients that they’ve seen, many of them with very complex cases. There’s no way they can keep tabs on everyone all of the time, its a system of priority. The sicker patients usually get the most attention and that’s the way it should be. But at the same time, those of us with chronic labile diseases like severe asthma need a way to touch base, even if it’s not an actual emergency.