column logo

For almost 2 years now, I have had home infusion treatment every week. I consider myself a professional patient. Managing a rare disease condition and coordinating my care takes almost all of my time and energy, and my infusions are a big part of that. I’ve found that creating a routine as well as treating the process as an essential part of disease management, has helped me cope with such an intense infusion schedule.

Infusions are a common treatment for autoimmune diseases, and many myasthenia gravis (MG) patients, including me, will learn about the different infusion treatments available after their diagnosis. I have been on intravenous immunoglobulin (IVIG) for about 4 years and started Soliris® infusions about 2 years ago as well. I get each on alternating weeks. My IVIG infusions take about 30 hours over 3 days, and Soliris takes about 2 hours in a single weekly session. I have at least 8 days of infusions a month.

Each infusion takes careful, complicated coordination between insurance, the infusion pharmacy, patient coordinators through the pharmacy, the infusion nursing company, and the individual nurses who come to my home to administer them. In the beginning, most of those individual entities were separate companies for each of my infusion treatments, but recently we have been working to streamline it all. 

The preparation before, during, and after infusions are all important to the process, and each stage needs to be treated seriously. Speaking on the phone is very challenging for me, so my husband helps every week with the phone calls. He also brings out the separate infusion supplies for each treatment that week and unpacks all the supplies, as well as the cleaning before and after each infusion. I often say that in many ways my husband does these infusions with me. 

I try to prepare something to watch or listen to during my infusions to help me get through them and a small reward for myself after I finish them. I plan to rest before, during, and after. I also have to make sure there is enough time between my infusions and that all of the medication and supplies are shipped on time. I try to coordinate all my regular appointments around my infusion schedule (although that is challenging).

Read more about therapies to treat MG

People often think I am just relaxing during all these hours of infusions, particularly since they are at home, but that is not the case. During the infusions, I have to stay engaged to watch for reactions, how my headache and blood pressure are, and whether I need more pre-meds during the infusion. I work hard to hydrate during the infusions as well. I got a port placed almost 2 years ago, and that has made the infusion less stressful.

It’s important to keep communicating with the nurse and problem-solve together. Over the years, I spend so much time with particular nurses that they become like family members. I’m always looking for ways to find humor and laugh during the process. Having nurses I know well really helps with the stress involved, particularly when something goes wrong.

Viewing my infusions as part of being a “professional patient,” my job helps me cope and communicate to others the time and energy involved in it all. I don’t think even medical professionals realize how exhausting infusions can be. I spend much of my time between my infusions hydrating and managing side effects. Just because my port has been accessed and the infusion is over doesn’t mean the work has ended. I monitor my side effects and continue to use pain relievers, rest, and other strategies to manage them. I spend the days before and after each infusion hydrating even more than I do normally. IVIG gives me an intense headache each time and working to prevent that is key. 

Most MG patients do not have quite such an intense infusion schedule, but all infusion treatments require work and energy no matter the schedule. Since getting infusions on alternating weeks, my condition has stabilized considerably. The long years of many hospital stays and all the hard work I have put in just the last 2 years gaining strength back are always on my mind while managing this infusion schedule. As challenging as it is, it is all worth it.