A holiday gift guide for people living with PNH
What to take to infusions, and what to wear there, too
We’re now well into the holiday season of celebrating, sharing family time, and offering gifts! As a person with paroxysmal nocturnal hemoglobinuria (PNH), I’m excited to put forth the following three items for your seasonal giving. I have two already and plan to ask for the third this year.
Although I try to keep my rare blood disorder separate from the holidays or other happy events, I’m so grateful for these gifts — and I’ll be glad to give them, as well.
I was given an iPad holder at the beginning of my Soliris (eculizumab) infusions, and I’ve found it extremely helpful. I didn’t bring it to the infusion center at first and would awkwardly fight to position my iPad in a way that’d be comfortable. I ended up placing it flat on my lap, but that made me look down, which caused me neck pain the whole time.
Since I’ve started using the holder, I’ve never stopped. I love having the device upright for the perfect view of my movies or games while I’m infusing. I also love that I can keep my IV arm straight and relaxed; the other arm only operates the iPad instead of having to hold it, too.
Smart water bottle
When I was diagnosed with PNH, doctors and other patients reiterated the importance of drinking plenty of water all the time. I was normally a decent water drinker, but some days I wasn’t. I noticed I felt better on days when I did I drink the recommended intake for my height and weight. I knew I needed to be more consistent, but I couldn’t get in the habit of it no matter how hard I tried.
I found an advertisement for a smart water bottle that keeps track of how much water the user drinks. I tried it to see if it helped me, and I’m so glad I did. I love this product so much that I ended up giving it to other family members who don’t have PNH.
The bottle not only keeps track of my water intake, but also has a light that flashes throughout the day to remind me to drink. That keeps me on track for my daily goal, so I don’t end up chugging a lot of water before bedtime.
With this bottle, I’m finally into the routine of drinking the correct amount of water each day, which has improved my health; my infusion nurses noticed the difference, saying that my veins are now properly hydrated.
A major problem I face on treatment days is figuring out what to wear, especially during the winter months. I need to keep my arm accessible for the IV, so I typically wear either a T-shirt or a long-sleeve shirt that can roll up easily. But the liquids I’m infusing make my IV arm so cold. I used to bring a blanket with me to keep warm, but stopped that as part of my COVID-19 precautions.
iVHOODIE looks like it might be the perfect way to keep warm while I’m getting my infusions. I’m so excited that something like this sweatshirt exists, and I’m putting it on my wish list this year.
I hope the items in this gift guide inspire ideas of what you can add to your list. My biggest wish, however, is for everyone to have a happy, healthy, and safe holiday season!
Note: PNH 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 PNH News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to paroxysmal nocturnal hemoglobinuria.