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My doctor has been an important part of my medical journey. He led me well through a difficult diagnosis of alpha-1 antitrypsin deficiency (AATD). He did some key things that really helped me think through what was going on in my body and prioritize the appropriate next steps.

First of all, he knew about AATD before I even walked in, that much was obvious. He had studied it and was familiar enough with it to know which types of tests to do for what information. He also knew how to treat the symptoms of a working diagnosis I had before the age of 35— emphysema despite never smoking.

Besides being knowledgeable about the subject (and using augmentation therapy to treat it), my doctor is also good at communicating with compassion and gentleness. Those attributes helped me understand the significance of why I was starting to have so many symptoms, almost out of nowhere. He was slow to speak, obviously not trying to cause alarm but still communicating the serious nature of what he had to say.

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He does listen well. He takes time during each appointment to answer questions. And he doesn’t just try to whisk me out of the office before he has heard all of them. I learned he has a system, which reminds me to ask him the questions I have (in a reasonable amount of time).

My doctor’s system goes something like this: the nurse walks in, asks questions about my current breathing difficulties, and then she asks if I have any questions for the doctor. I tell her yes or no and if I say yes, she asks what the questions are, and writes them in the chart. The doctor will later walk in and answer those questions and/or he may ask at the end of the appointment if I have any questions. 

I can’t explain it, but the time he took to listen made what he said seem reliable and trustworthy. He has been able to set a large time frame for me, valuing my time enough to use it to help me, the patient, understand better how to take care of me instead of leaving me with a diagnosis and treatment plan that very frankly, frightened me.

Read more about the diagnosis of AATD

He would study my chart before he walked in, always prepared with both answers to questions and any he had for me (to clarify what information he had). I noticed that because I remember it seemed like none of my other doctors were taking me seriously. The condition I have is, after all, pretty rare and of course, completely new to some doctors I have talked to.

I understand why some would doubt the credibility of what I say when it’s not something they understand or have heard of before, but I also appreciate the fact that he understood enough to listen to my complaints. It’s why he’s still my doctor.

My doctor also can be persistent. He had to be proactive and persistent with the insurance companies to find out what brand of augmentation therapy to use and whether or not insurance would cover what was needed. To do that takes patience and time, a valuable resource that seems so out of reach for so many doctors.

We patients with rare diseases need things from time to time from our doctors because we have such limited resources and energy. Angst and frustration are common feelings that drain us emotionally and physically, especially with having a health condition.

So often I have searched for answers. Other people have strong opinions about similar things and will often suggest things to me that don’t make sense. I just think doctors have a profound ability to give a chronic disease patient confident answers that can lead to a manageable life, even an inspiring one.

In this crazy world where sometimes a patient swims in a sea of uncertainty at the initial diagnosis, a knowledgeable doctor with time can be an oasis. 

Yes, I can use common sense and yes, I can talk to others in my support group, and I draw strength spiritually from my faith. But it helps enormously to hear my doctor can show me how to care for myself.