Patient Profile: Brandi H.
Brandi H. Shares Her Story
Diagnosed in September 2008, Brandi's story may look familiar to a lot of other patient's with a Primary Immunodeficiency (PI). She was sick all the time with ear infections, sinus infections, and strep throat. The ear infections took a toll over her lifetime and Brandi is now deaf in her right ear. To counter you may catch Brandi intently watching you speak as to read your lips. She also wears a hearing aid to help her hear anything she may miss while you are speaking.
Brandi got lucky and two different doctor's were finally able to save her life. She is currently on a weekly subcutaneous infusion (a.k.a. SCIg, sub-q). Her infusion "date" is every Friday. She maintains a good relationship with her physicians and said "they have seen me from my worst to my best." Brandi is fortunate that she is able to text her doctor if there is an issue. Most of all she is just glad they stuck with her and they trust her like she trusts them.
Even with a diagnosis and the right treatment plan, bad days still happen. On her worst day, Brandi is bed ridden. On those days she calls it a "flare up" and they get so miserable that she just stays in one place. When a flare up happens Brandi reaches for her trusted blanket, her bed, and the most importantly her big plush zebra Zoiee. A good day for Brandi is making it out of bed in a timely manner, completing her full 8-hour shift at work, and making it home without needing a nap.
When asked what the hardest part of having a Primary Immunodeficiency is Brandi answers, "wow, I think it has been accepting my new way of life, and needles. When I started this journey I was afraid of needles. Quickly got over that!" Brandi mentions that it took time for her to slow down, "I can't work 50 hours a week any more, I mean I used to have 2 jobs." Most of all Brandi has learned who her friends are, "I would wake up and feel good, make plans, and a few hours later I was canceling plans with friends. They don't understand and that's ok." Most of all Brandi misses the concerts, the 5k races, and short weekend trips. "I used to look forward to them," said Brandi, "but I would get sick and I just can't go."
Brandi looks back and says," I have only asked the age-old question, why me, once. And I got my answer at a local Immune Deficiency Foundation meeting, I have the opportunity to help others." Brandi hit rock bottom during the search for what was wrong with her, " I was done and I gave up." Since then Brandi has become an advocate and takes any chance to raise awareness for PI and her people. You may ask, who are her people? Brandi's people are her parents, the herd (other patients with PI), and you the reader who are taking the time to read her story.
Most of all Brandi says her biggest pet peeves are people that know she has a PI and they still come around her when they are sick. "They cough and sneeze on me," says Brandi, "I can't wash my hands, arms, and face fast enough." In the winter Brandi wears a mask and she sees the stares," I wish they would just ask why I am wearing it." Social media has become a place to raise awareness and to talk about things, "I get private messages from friends that say they are tired of hearing about my illness and just get over it because no one cares."
Brandi closes out her story with a message to those newly diagnosed patients, " you are not alone and don't be afraid to lean on others. We are all different, our journey varies slightly from each other, but we are the same." Most importantly Brandi says," don't give up if something doesn't work. They will find what works."