Conversations with others in the alpha-1 antitrypsin deficiency (AATD) community are somewhat varied. But there are some common concerns we all have. And we want to discuss them with someone in our own “tribe.”
The reason we want to talk is that being a patient with AATD can leave one confused and feeling alone. Not many people understand the condition. What’s more hardly anyone except other “Alphas,” as we call each other, will be able to truly empathize with us.
We talk about test results, in the beginning. We realize eventually that we won’t ever know what some results mean, but we can find out what the lab results mean. So, we talk about genotypes, as that is always how we got our diagnosis. Those of us who are lung- or liver-affected talk about what we expect or want to know about what to expect with our genotype.
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Sometimes we get into the pulmonary function test (PFT results), but it doesn’t take long to realize these are too hard for us to understand.
However, most conversations involve trying to understand symptoms. Even though the symptoms directly linked with AATD are relatively few, everyone is a different person. Some of us have health issues besides liver or lung disease. Take, for instance, a heart attack. It’s not directly caused by AATD, but it may have indirectly affected the outcome.
Did the AATD cause the heart attack, or did it raise the risk of the heart attack? I’ve learned that reality is the latter idea. Still, having one and also having AATD might be reason enough for someone to want to ask questions. We talk about treatments. We want to know what others are doing for themselves, just in case we want to discuss that option with our doctor. This includes oxygen, infusions, inhalers, and exercise.
As an example, usually, a conversation between two patients goes something like this:
Me: “Hey Sam, how are you? Are there any changes in your AATD symptoms?”
Sam: “Hi! No, but I am going to talk to my doctor to see what can be done about breathing issues and my sleeping disorder, I can’t get it under control.”
“Sounds good! It’s always good to advocate for yourself. What is your genotype? I can’t remember.”
“I’m a PiSZ. I mentioned sleeping issues at my appointment 6 months ago. But the treatment never really helped.”
“Ok, same as mine! So what’s your treatment? Is your doctor an AATD specialist?”
“Yeah, he’s pretty smart and all. I just couldn’t get used to the CPAP machine. It’s nice to talk to another Alpha, though. What are your symptoms like?”
You can imagine where it might go from there. In my support group, conversations are usually topical. Everyone can provide input on a question and conversations often begin there. Believe me, all of us have strong opinions. And those of us who don’t have treatments are generally very curious about others’ stories before we jump into one.
We also talk about our doctors. Once we have damaged lungs, we want to know if our doctor is knowledgeable about AATD, as lungs are not easy to replace or repair. And yes, we have lists of doctors who are specialists for anyone who asks.
Sometimes, in support groups, there is a push to get a second opinion. When an AATD patient/carrier reports their doctor told them they don’t need to change anything or be concerned about their health, we all see a red flag. We all very much want to feel like we will be heard when we voice concerns.
I also want to know that at the right time, my doctor will act quickly. We want our doctor to know if and when to start infusions, for example, and that we will be secure in our trust of him or her. It’s always about hearing and being heard. We all need it and can all enjoy learning from each other.
