Every three weeks, my husband and I wake up early, leave the boys in the care of my mother in-law, and head to McMaster Hospital in Hamilton Ontario. I call it Infusion Day.
Common Variable Immune Deficiency :
"CVID is characterized by a low level of specific proteins (called immunoglobulins) in the fluid portion of the blood. This results in a loss of antibodies, and a decreased ability to fight invading microorganisms, toxins, or other foreign substances." (https://rarediseases.org/rare-diseases/common-variable-immune-deficiency/)
In short, my body does not have a proper immune system.
It took years to get this diagnosis and receive proper treatment called IVIG. This blood product from donors, contains the antibodies someone like me doesn't produce enough of. It has shown good results for my condition as well as many others, however it is not sustaining. The infusion of this product only temporarily replaces a person's immune system as it is metabolized quickly, making it a life-long treatment.
I've been going to the Medical Day-Care Unit at McMaster for this treatment for over four years now and it has become a sort of home away from home. Every three weeks on Fridays, I head over and the first thing I do is chat with the receptionist Nina, who is the superwoman of her field. Patients adore her, nurses praise her, and doctors respect her. Got a problem? Go see Nina!
After checking in, I'm assigned to my chair for the day which is usually the same every time. The unit has over 20 chairs (reclining hospital chairs) with a seat beside for a loved one to sit with you. Your nurse is responsible for you and four others, all who need IVs started, blood taken, pre-meds administered and vitals checked every 30 minutes. They are busy!
Arms are then wrapped in heated blankets to make the veins pop before attempting the IV insertion. Unfortunately since the majority of us need to be poked so often, our veins are damaged and tricky. It takes a combination of great skill on the nurse's part, tricks of the trade, and prayer to get an IV in me properly. Sometimes we can get it in on the first attempt, other times we are poking different holes for over an hour. Hydration helps too, so I try to drink as much as I can before hand.
Once patients are set up and given all their meds and IVIG product, they can relax. The unit has a kitchen with snacks, juice, and coffee for everyone and also a selection of movies with old school portable DVD players. Some people sleep or keep their hands busy with knitting or typing. Some nurses will even play a card game with you if they get the chance. I get cozy with a couple blankets, my fuzzy wool socks, and a movie, while Adrian has his own entertainment or work to do, and sometimes when feeling up to it, we get to visit with people who have become dear friends.
These people have become a regular part of our life and are a true blessing. I've gotten to walk with others on their health journey and see people through the ups and downs of illness. Our unit does other treatments for patients including transfusions of iron and blood, draining of blood and even chemo. Sometimes we only see people once or twice but there are others I've seen for years.
We are like a big "family".
First there are the doctors who are behind every diagnosis, all the orders, and treatment that we receive. They are usually off the unit but working tirelessly for their patients. They are the "fathers" of the group. Next we have our "mothers", the nurses who, just as smart and vital, keep everything functioning. They are an incredible team, talented and hardworking. They keep the "home" going. They do full care, keep us safe, perform their tasks tirelessly, and are always there to lend an ear or hold your hand. Together our doctors and nurses are irreplaceable and such a blessing to each one of us. We patients are the "brothers and sisters", sitting next to each other and in our own ways, giving comfort and support to one another. We commiserate, make each other laugh, and even pray together. I've been blessed to hold the hands of unfamiliar faces, patient or nurse and pray for the strength and courage to keep going, in whatever struggle they are facing. Not one of us are exactly alike in our state of health, but we're on this journey together and I hold each person I see up in prayer. It's a privilege and I'm grateful for every person there.
Like any family, we have our quirks and disagreements. Nurses have power struggles, patients can make ridiculous demands, doctors lose paperwork, and someone occasionally gets forgotten. Adrian and I sometimes just listen to the chatter around the room. Anyone who knows hospitals knows that nothing is private. You hear everything including; medical emergencies, complaints, family squabbles, someone losing a game of backgammon etc. and sometimes you can't help but smile when we hear some of the hospital gossip like pregnancies and promotions. There has also been the occasional nurse who gets a very loud/public scolding from across the room. It's never a dull moment.
As creatures of habit, we have our "usual" chairs, nurses we prefer, and specific times we like being scheduled, so when things get shuffled around a bit, we catch ourselves feeling possessive of what we're used to. When I start to feel that way, God reminds me that this treatment is a gift, not something I am entitled to. IVIG is very expensive, but I don't pay for it. Here in this clinic, my health and well-being is taken seriously and monitored closely, and I get what I need to live without fear of catching every illness.
About an hour or two into my infusion, the discomfort starts. Some people experience minimal side effects while others are very ill for up to 48 hours later, depending on what other conditions they may have or the speed at which they receive their treatment. I'm somewhere in the middle. My energy starts to drain and any colour I had in my cheeks disappears. I get nauseous and achy and sometimes spike a fever. I call it, the flu in a bag. After I'm finished my infusion we say goodbye and slowly walk back to the car. Once home, I get into my pjs and crawl into bed. I have medication that helps with the side effects but I still feel quite sick with joint pain, vomiting, and a pounding headache. Some weeks are better than others. Sometimes by the next morning, I'm feeling fairly well, and others I struggle for an extra day or two but it's a small price to pay for so much in return.
I am so incredibly thankful to be fairly stable in my health and have options if/when things go downhill. I have friends in this clinic however, who are not doing well or getting better. Some are too sick to walk or eat, relying on feeding tubes and constant care. Some are fading right in front of me, growing thinner and weaker each visit, and some are dying. It's heartbreaking and sometimes difficult to watch, but through it all there is the overwhelming feeling of community. Even without words, we can find comfort in each other and I pray each one will find the ultimate comfort and peace that can only be found in Jesus Christ.
Infusion days aren't easy. They are tiring and nerve wracking and painful, but they have become a regular part of life in my family. It's a treatment that helps my body function and be able to be a wife, mother, and friend. It's a place that allows me to walk alongside people I never would have met otherwise and get to pray for them and love them. Along with all the struggles we as patients have to face, we also get to share laughter, celebrate milestones, and see the sacred beauty of life here on earth through many different perspectives.
Infusion days are tough, but they truly are a gift.
Author - Erin
Follower of Jesus, on a journey to glorify God and to advance His Kingdom while battling Chronic Illness in the everyday life. Diagnoses include Lupus, CVID, POTS, IBS, Hemiplegic Migraines and other Autoimmune conditions.