Being the caregiver for someone with Alagille syndrome (ALGS) can come with its own set of challenges and emotions. At the top of the list is someone diagnosed with ALGS becoming sick with a virus. I have 3 kids with ALGS and a son post-liver transplant, and viruses and germs worry me.
Recently, my anxiety has been through the roof the more I hear about all the illness that is going on all over the country. I am living in prison in my head, where at every turn I’m facing a virus or illness that sends me spiraling. I am second-guessing all the decisions I make when it comes to my kids. I get anxious in crowds and can’t enjoy myself or my time that is meant to be fun and full of memories. I even get anxious and regretful when we are around family wondering if in a few days we will be sick from germs they didn’t even know they had. It’s a relief to me when we are fine 2-4 days after being out and about and we haven’t been tagged by an illness.
I have started restricting things like putting my kids in the daycare at the gym because it is probably overloaded with germs right now. I have started to turn down birthday parties and even limit the amount we go to church because I am so worried we will catch something that will be detrimental to any of my kids with ALGS.
Read about comorbidities in ALGS
There are lots of viruses running rampant and causing a lot of sickness among kids. When I hear that hospitals are at capacity, and many are doubling up rooms or utilizing their ERs for rooms for admissions it doesn’t sit well with me. It makes me anxious if a situation were to arise where we needed to have an admission ourselves. We were always told my son would get a single room since he is immune compromised, but with the overpopulation, I’m not sure that would happen.
In the same breath, we try to be smart and alert and take precautions such as handwashing as soon as we get home from school as well as changing from school clothes into clothes that are fresh and clean. We carry sanitizer with us everywhere we go so that we can use it often, especially if we are out and about to enjoy a snack or meal. We also make sure to stay up-to-date on our vaccines.
I worry about my son who is post-liver transplant and how the illnesses will affect him. Post-transplant he’s only needed to be hospitalized once for a stomach virus, but you just never know how he will do and every single cold sends me over the edge. I wonder if there is a point in life on this post-transplant and ALGS journey where eventually not every sickness in my mind will lead to death. It’s exhausting and overwhelming to feel this way all the time and feel like death is knocking.
At the sound of any sniffle or cough, my guard is on high alert and my anxiety takes over to the point that I make myself physically sick with all the worrying I do. I need to find a way to escape my fear of germs and enjoy life with my kids.