The Dysautonomia Center blog is happy to welcome guest writer Ms. Samantha Myers, who has familial dysautonomia, and shares her story on the at times difficult decisions she needed to make to protect her lungs.
Last May 2016, I went into the Intensive Care Unit (known as the ICU) for the third time since January of that year for pneumonia caused by aspiration of food. I had been planning to travel to London with my parents but the doctors felt that it was not safe for me to go because I kept getting sick. I was really disappointed.
When I came out of the hospital, I met with Dr. Kaufmann, my FD doctor, and Dr. Kazachkov, my pulmonologist. They really wanted me to get better and not keep bouncing back into the hospital ICU. They suggested that I stop eating by mouth for two months; instead I would get my nutrition through my g-tube, which is how I used to get my food until I was 9 years old. I really love eating and I was very upset when they told me this, but I also knew that they were thinking about what would help me get better, and keep me from bouncing back into the hospital every few weeks.
In addition to not eating, I have had to stick with pretty intense respiratory therapy every day at home. Twice a day, I have to inhale albuterol via a neubulizer to open my airways while I am also doing the AB vest that loosens secretions. This is followed by a cough assist treatment that helps get rid of mucus and other things that can stay in my airways and lead to infection. Every other month, I also do a second inhalation treatment of an antibiotic called Tobramycin two times a day after the other treatment.
After two months of not eating, I had a swallow study and met with a feeding therapist who taught me how to eat safely. I only eat small amounts and I chew very carefully and cough deliberately after each bite. It was really great when I got to have my first meal after 8 weeks from my favorite restaurant, Favela Cubana! They make the best grilled chicken, Brazilian cheese bread, and herb fries.
I only eat by mouth about three times a week and I am very careful to follow my instructions from my food therapist; this way, I don’t put my lungs in danger but I still get to enjoy my favorite foods. I still wish I could eat the way I used to. But, it’s better than not eating at all, and I haven’t been sick or in the hospital for ten months! I just had my annual check up and the doctors were REALLY impressed with how improved my respiratory situation is; in fact, they said it was much better than they ever imagined it might be. That was amazing news! I couldn’t stop smiling. The biggest reward is that I am planning that trip to London that I had to postpone because the doctors say I am ready to travel safely now.
“Even though the advice they gave me seem hard at first. I am glad I can protect my lungs and keep out of the hospital”
– Sam Myers, on giving up eating by mouth to protect her lungs
Living with FD is definitely not easy. There are so many challenges that we face, and we have to be extremely disciplined about things that other people take for granted. But we are so lucky because we have amazing doctors who are always on call and always thinking of ways to make our lives easier, even though the advice they give might seem hard at first. I am glad I can protect my lungs and keep out of the hospital and have the chance to travel and do other things that I might not otherwise be able to do.
Read more about FD and eating: https://dysautonomiacenter.com/2015/10/21/why-are-we-excited-about-eating/