I remember that the first time I met my regional AlphaNet coordinator, she found a way to talk with me at a time that was good for me as well as for her. It was validating in a way that I didn’t know I needed because I was having difficulty accepting that I was diagnosed with alpha-1 antitrypsin deficiency (AATD). She encouraged me to step out of the denial that I had an invisible lung disease and into the position of a person who was ready to go through with the prescribed treatment.
She was not the only one to help me, because I would never have the treatment or answers I have if it weren’t for my pulmonologist who knew about this prior to my coming to him for testing. I never smoked, nor I had ever been exposed to secondhand smoke, but I am glad I signed up to talk to her at alphanet.org.
I suppose one of the reasons I could not initially accept I needed augmentation therapy for the rest of my life was that it seemed so bizarre that I would have emphysema. I had been careful to be a “healthy” person for so much of my life. I had a hard time accepting something so serious, although it did explain the new tiredness I had on top of the tiredness I had associated with other health conditions at the time.
She explained that some people with AATD have a pulmonary function test that shows issues that become worse slowly, and some people whose tests show a decline that happens rather quickly. Mine was one that was declining quickly and it was strangely but nonetheless validating to hear that.
Read about symptoms of AATD
My coordinator also helped me communicate with others in a positive way. It was also difficult to communicate to my family and friends that I was “that sick.” Most of them knew I had medical issues, but not that I needed infusions for the rest of my life.
That was probably the hardest step for me because I didn’t know how to explain something to loved ones that is invisible and unheard of to almost everyone else except me and my doctor. I knew I had the deficiency long before I knew I needed the therapy. The reason for this is that initially I was healthy and I had concluded I would probably not ever be seriously sick.
She guided me in finding solutions to the problem of getting the infusions paid for right now while looking at future financial needs. I felt very secure in my overall outlook after speaking with her.
There are so many things that go into the process of guiding a scared respiratory patient who still feels like she needed to live. I had to learn that the time to live is now. I may not have 35 more years left on the earth to do what I was born to do.
It can’t be just my doctor and it can’t just be me. It can’t even just be a parent or two. It will take the right people coming together and some self-advocating from me.
I’m glad my coordinator was so knowledgeable. I learned from her, that she and all of the other AlphaNet coordinators are people who have AATD, so they understand it well.
I think of her as a mentor that I can contact if I have questions, a reliable source of information, and empathy. I rely also on support groups, supportive family and friends, and faith in a higher power to get through tough times.
As anyone with a chronic illness will tell you, hard things happen. They just don’t have to define a person’s life. There are so many tools available to utilize if one has the opportunity, which is why I am really trying to advocate for awareness of AATD where I can.
My coordinator taught me that there is light at the end of the tunnel. The trick is finding my way through the tunnel that right now has invisible obstacles and avoiding possible hang-ups.
I want to do what I was made to do while I still can and I want to be who I was made to be while I have the strength and time to do it. I still have a long ways to go, but I can see the light in the distance.