Every time I see my pulmonologist for alpha-1 antitrypsin deficiency (AATD) issues, I bring many questions. During a single appointment, I had 5 questions written on a piece of paper ready to ask the doctor and I had left spaces after each one for his answers. It might be an understatement that with an AATD patient, there is always a degree of anxiety for them and, initially, lots of questions from the patient. 

My doctor is very knowledgeable about AATD, and unlike some others, I have always had good experiences with my pulmonologist. For him, being able to go into that room with an AATD has got to take courage and knowledge to face me with confidence and be able to deliver the kind of care that someone like me so desperately needs.

I know that AATD, because it is primarily a lung issue for me, means the road ahead will be anything but smooth (although I have made a lot of progress). I believe this intrinsic knowledge leaves many AATD patients feeling vulnerable. For instance, I know that even if I am doing well, this could change without warning.

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So I come with questions. I question even myself about whether I am communicating with my doctor well enough. I also ask myself, and sometimes my doctor, how I am going to pay for treatment if things suddenly get worse?

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I want to be heard and I want to hear. Sometimes, in the middle of that with lots of anxiety going on, I get confused about what the doctor said. So I often need clarification as well as empathy.

I really appreciate the empathy and gentleness my doctor possesses. It is calming for me to have a doctor who realizes the patient may not want to hear what he or she is about to say because it may not be good news. I have questions and now I have more courage because I know he or she has the capacity to answer them gently.

I remember going to my doctor for a follow-up pulmonary function test (PFT) and hearing my doctor say the word “Prolastin®.” Somehow, I already knew what that word meant. I had already associated it with bad lung health and an expensive augmentation therapy that I would likely need for the rest of my life.

I was right, and I remember looking at the doctor at that point, unable to verbalize the fear I was feeling. This is what I had only heard about. I knew of no one else who was receiving such invasive treatment for this rare disorder. I couldn’t believe this would ever happen to me.

Normally my visits with the doctor are lighthearted and quick, except for the PFT part. I sometimes feel strongly that I could do without all the breathing hard and holding my breath for long periods. I also know in my head, though, that these are important for measuring lung health, so I go to those appointments.

But that day I was in shock. I was in denial that I would even need the therapy he was suggesting. It took waiting and talking with my family to help me see more clearly that it would be helpful to start the therapy. 

Next, my doctor also had to take time to convince my mom that the therapy I needed was really necessary. It was nice to have her support right now, so I don’t regret letting her be involved, but she had questions like any mom would.

Being a health nerd and a curious person, I will always have questions for my doctor. Lung health is pretty important, so my situation demands I understand what is going on. Naturally this created some tension but it is something I deal with daily, and it is my responsibility to ask questions and listen to the doctor. 

I have enjoyed learning about AATD from my pulmonologist as he has studied it more than a regular HCP would. I have also learned it’s important for me, as the patient, to be patient and let the doctor make the decisions and let me know what my test results are and mean.

The patient has many other responsibilities, too; I have to be open and honest about the difficulties I am facing, not minimizing and not exaggerating anything. The ability to know what questions to ask is simply priceless, too. It’s become a joy, learning to be a patient!