Just got back from my Remicaid infusion and all is well. I remember how nervous I was my first couple of treatments. I still get a little nervous each appointment. I just want everything to go smoothly and for this medication to continue working well. It’s been about 17 months of infusions and, minus a few bumps in the road, a pretty quiet ride.
I thought it might be nice to compile a list of infusion related tips/advice at this stage in the game. I’m by no means an expert but I know quite a bit about being a patient that regularly needs to receive intravenous treatment. Here goes:
1.) Hydrate well before each treatment. Being sufficiently hydrated will help your nurse when he/she is trying to find a “good” vein. And it makes it a less painful process for you. Nothing worse than having people poke and prod. That said, nurses in charge of infusions are pros. They do this all day every day and are very skilled.
2.) If you have a place where you prefer getting an IV, don’t be afraid to let them know. Conversely, if you have a spot you hate getting IVs, don’t be afraid to voice that to the nurse. Sometimes you won’t have a choice because they need to go for the vein that looks the best. But often times they can shoot for your preference. Example: I hate getting IVs in my hand. It always seems to hurt, causes me anxiety, and blood flow isn’t great from my hand. So if they need to take blood (which they always do for testing) it can be a not very fun experience. I remind my nurse at each infusion to avoid my hands if they can.
3.) Bring/wear warm comfty clothing. I often get cold during treatment. It’s a fairly common response. I make sure to wear something that makes it easy for the nurse to set up for the IV in my arm. I also always bring warm, fuzzy slipper socks. You might find this unnecessary if your infusions can be done in an hour or less. My infusions tend to take about three hours. It’s an hour of prep (blood draws, steroid injection, take my premeds and go through the whole question/answer updates via computer system. Then it’s another two hours once they get the Remicaid going. I also ask for a warm blanket from my nurse.
4.) Bring something relaxing to do. I always have a book on hand and bring along my ipad and phone. That way I can listen to music, watch some Netflix, etc… To be honest, sometimes it’s nice to have two hours to completely zone out. I try and think of it as a spa treatment. 🙂
5.) That leads me nicely into my next piece of advice….stay calm. Try not to work yourself into a frenzy. Maybe you have an aversion to IVs. Maybe you are scared shitless of these drugs. If you can stay calm and relaxed, it makes the whole process much easier. Our minds and bodies are connected. Meditation can be very helpful if you have a lot of anxiety around medical issues. But I find keeping my mind focused on other things, through reading/listening to music, is perfect.
6.) Try and get to know your IV nurse(s). The better relationship you have with them, the safer and more comfortable you will feel. They really do want you to feel better. I very much look forward to catching up with my infusion nurse every 6-7 weeks. She is a total sweetheart and clearly cares so much for her patients. It’s nice when you feel your medical team cares and knows you. It helps.
7.) Be communicative with your infusion nurse. Don’t be shy about giving them updates on your health, if you’ve noticed any new symptoms, or if you have questions. And definitely let them know if you begin to experience any signs of an allergic reaction during your infusion. They will be monitoring you very closely throughout, checking your vitals regularly and looking to see if you develop a rash. But if you notice something before they do (rash, trouble breathing, etc..) let them know immediately.
8.) Try and always show up to your appointment on time. It depends on your infusion center but my center has very limited chairs. They book things on a tight schedule and if someone is late, it can throw the whole day off. Also, cancel and re-book if you know you won’t be able to make it. Chances are there is a patient out there that could use a free chair and maybe had to push their appointment back. It’s the considerate thing to do. Everyone runs behind at some point but it’s important to try and be timely to these appointments. You’ll be doing yourself, the nurses and other patients that day good.
9.) Don’t skip your appointments if you can help it. You might be forced to cancel should you develop a fever or other signs that you are coming down with a virus or infection. Remember, these drugs are suppressing your immune system intentionally. It’s dangerous to have an infusion of Remicaid if you might possibly be battling another health issue. But if you are otherwise healthy, outside of your IBD issues, get thee to your infusion appointments. This will ensure you are maintaining the correct amount of the drug in your system so that you can feel good. Additionally, it helps your system from possibly developing antibodies to the drug. You don’t want to go an extended period of time without, as that increases your risk of an allergic reaction to the drug.
10.) Treat yourself on infusion day. Let’s be honest…no one wants to go the hospital, sit an a chair for three hours hooked up to an IV. It’s not exactly a fun time. It’s not the worst but it’s no party. You have a serious disease and this is what it takes to help you maintain a high quality of life. But doing something nice for yourself on the day of your infusions is patting yourself on the back and giving yourself a hug for a job well done. I take myself out for a shake at my local “Shake Shack” post infusion. It’s something I have begun to look forward to and it’s now just a part of my routine. It helps me end my day on a positive note. Sounds trivial but I swear it helps!
There’s my list! Ten tips when getting infusions. Fun fact: I was IV phobic prior to getting diagnosed with this damn disease. I wouldn’t go as far to say that I’m totally okay getting stuck every six weeks but I get a whole lot less anxious about it now. It gets easier. Especially if the drugs work for you!