My Pulmonologist is on Speed Dial

How many times do you answer the phone for an unknown number? Before being diagnosed with pulmonary hypertension (PH), the answer for me would have been never. Now, I rarely let a call go to voicemail.

I make it a habit to save my pharmacy and clinic numbers on my phone. However, it never fails, they always call from some random number that I don’t recognize. I try to return the call almost immediately, but I usually get an Amazon shipment faster than I get a call back.

Communication is a priority for me

Once I learned the severity of pulmonary hypertension, I knew I had to have a reliable means to contact my doctor that didn’t involve an hour on hold. Communication is a priority for me, and it is something I always discuss on day one with a new provider.

I recently had to switch to a new pulmonologist to manage my pulmonary hypertension, and the first question I asked was, “what do I do if I need to go to the emergency room?” He immediately said, “you give them my cell phone number and tell them to call me immediately.” That was a huge weight lifted off my shoulders!

I live 2 hours away from my pulmonologist, and sometimes emergent symptoms can’t handle a commute. In my experience, many medical professionals are not familiar with pulmonary hypertension, the severity of the symptoms, or the medications. I usually have a good bit of explaining to do if I ever find myself in an urgent care or emergency room.

My pulmonologist is on speed dial

So now, Dr. Ben, my pulmonologist is actually saved as one of my emergency contacts in my phone. I use his personal cell phone number sparingly, respecting his time as well, but it is a comfort to know he is just a phone call away. Fortunately, I am also able to send him messages via the hospital system portal for less urgent needs such as medication refills and miscellaneous questions.

Unfortunately, he is the only doctor of mine available on speed dial, but the most important one at that!

I also label and save other important medical phone numbers for easy access. This not only helps me remember, but also allows me to take a load off from time to time if I need a caregiver to communicate on my behalf. My favorites section has more medical contacts than friends and family.

There has to be a more efficient way

I am on triple therapy to keep my pulmonary hypertension in check, meaning I take 3 specific PH medications working in various ways to keep my pressures down. These 3 medications are highly specialized, very expensive, and come from a select few pharmacies in the entire country. Usually these pharmacies are the ones that, without a doubt, call from the most random numbers for refills. I tend to save these types of contacts as first name - pharmacy name, last name - medication name.

I will also save numbers I receive from nurses or medical assistants at my other specialists’ offices. Most of the time these numbers don’t allow a call back, but at least I can see their names come across my phone. I loathe missing these calls the most!

Nine times out of ten a return phone call leads to 8 minutes of automated messaging followed by me giving away every piece of personal identification just for someone to leave a note to the nurse saying I called back. There has to be a more efficient way!

Communicating urgent messages can sometimes be difficult

I learned this the hard way when I was unexpectedly admitted to the hospital for severe anemia and a dangerously low platelet count. I was told to contact my hematologist, and given the decision to stay at the current hospital I was at or switch to the hematologist’s hospital. I was already frantic enough, and couldn’t do anything but leave a voicemail for someone who may or may not have worked directly with my hematologist.

It can be incredibly difficult to get urgent messages across in a timely manner. Living with pulmonary hypertension, every second and every decision can be life threatening. That is why I like to prioritize communication standards from day one.