I was amazed by all of the support available to us at the beginning of our treatment journey. We received phone calls to make sure we were managing our appointments and insurance paperwork. We got reminder emails and envelopes full of information in the mail. Our doctor and nurse at the hospital were incredibly helpful, beyond what I’d previously experienced at a doctor’s office.
I began to think that managing this disease might not be as big a deal as I had feared. My son started treatment on Nov. 12, 2017. Infusions went smoothly, aside from a couple of times he had to get poked twice to get the IV started. He was doing well with only minor reactions.
Joining the community
We paid biweekly visits to the children’s hospital for his infusions over seven months. I look back at that time now as the kindergarten of our learning process. The hospital has fantastic staff, from its cafeteria team to the amazing woman in the infusion suite’s playroom, to its sincere, caring, and educated nurses. My son seemed to accept his treatment and was happy to spend time with the wonderful people there. We felt as if we were part of a special community where everyone understands, and you don’t need to explain anything.
Transitioning to home care
The only inconvenience was the hourlong drive to and from the hospital. My son would be exhausted after his infusions, and the drive home was unenjoyable. So, when I was confident that we had a handle on all things Fabry, I asked to switch to home infusions. I believed that this would make treatments easier for my son and was excited about the transition.
However, shortly after we’d changed over, I wished that we could return to the comfort of our little hospital room, getting our lunch from the sweet cafeteria staff, and enjoying our walks to the playroom. I was overwhelmed at the boxes of supplies and mounds of paperwork that I had to deal with, and no one was calling to offer help.
The burden of the disease and our only treatment option became all too real. It was no longer a biweekly adventure to the hospital. We now had to live with it in our home.
In the short time that we’ve been doing home infusions, I’ve noticed my son’s anxiety grow. Maybe his unease is due to his restriction at home during infusions, or he feels more comfortable breaking down here. Whatever the reason for his nervousness, I know that it’s not working. He sees the infusions as something we are doing to him, not for him.
His nurse is sweet and patient, but he hasn’t connected with her. He dreads her arrival. The sense of community is gone, replaced by an overwhelming feeling of loneliness. I want things to work out so that my son can live as normal a life as possible, but I can’t help but wonder if I have made a monumental mistake.
Note: Fabry Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Fabry Disease News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Fabry disease.
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