What I Wish I Knew When Attending My First Infusion Center

I can’t speak for anyone but myself, but by the time my insurance provider approved my first biologic medication, I was more than ready. Looking back, I would consider it borderline desperate. My skin was on fire, my guts were on fire. Everything hurt, I wasn’t okay.

Finding an infusion center that would take me was almost as difficult as getting the medication approved.

Find access to a facility, then tour the facility

The first thing I would recommend before committing to an infusion center is to tour the facility. I wasn’t thrilled by the facility at my Gastro's office. The nurses were cold during the tour, the facility appeared run down. There was an unpleasant vibe. Also, I would have to establish myself with the oncologist, even though I didn’t have cancer, just to use the facility. It was an expensive co-pay, too.

I was unable to find a facility closer to home that wouldn’t force me to establish with a doctor that wouldn’t technically be overseeing my care. And then there was the specialist co-pay to establish with that practice to contend with. It was all very frustrating.

The run around

My Dermatologist at the time didn’t have an infusion center and told me to visit the local cancer hospital. So, I went there to inquire about infusions as a non-patient of the hospital and the lady just blinked at me. Eventually, she made a call and told me cancer patients of the hospital only. Which totally made sense, but I was only doing what as suggested by the dermatologist.

It’s ever so much fun to be sick and in pain while getting the runaround.

At the suggestion of a nurse from the infusion center at the local hospital where my PCP had rights, I asked my primary if she would consider writing the script if my specialists wrote out specifically how she would have to order the meds. She wasn’t comfortable. I understood and didn’t blame her.

Home infusions

At the time there was a little-known option for home infusion therapy. I did try to look into home infusions. No one from the specialty insurance company could advise on how to proceed. These days, home infusion are offered regularly. Like anything medical, there are pros and cons.

In my opinion: The pros involve being in the comfort of your own home and not having to travel. The cons would be if you begin to experience a reaction to the treatment and aren’t in or near a medical facility.

To this day, I am unsure if I would have opted in for home infusion. But options are always nice to have.

I have friends who started off their infusions at a facility. Once comfortable with treatment, infusions moved to the home. That seems like a decent compromise, in my opinion.

Do not settle

I settled and scheduled my first infusion with my Gastro’s infusion center. You know, the place with the cold nurses?

They were at least kind to the chemo patients.

It went about as well as that last sentence sounds. I had to fight for them to administer pre-meds. My doctor was no more than 60 feet away on the other side of the wall, yet I was the one who had to physically call her side of the office to send someone over to tell the nurses to administer the dang pre-meds. A pre-med administration, in this case, consisted of an IV antihistamine, IV steroid, and an oral dose of extra-strength Tylenol that were given prior to the administration of the biologic. After the pre-meds were administered, a nurse who never gave me her name nor did she wear a name tag, hung my miracle med.

When the anniversary of that first infusion rolls around, Facebook still reminds me of the hope I had hanging on that IV pole.

Be informed, have an honest conversation with your care team

What I wish I knew then was that once the drip started my vitals were supposed to be checked every 15-to-20 minutes. Vitals that are taken during an infusion usually include blood pressure and temperature. Also, I was never warned that new hives could be a serious issue.

I’m an allergy person. While hives are normal for me, a medication reaction that includes hives is to be reported immediately. No one told me. I also wasn’t learned on the warning signs of anaphylaxis, either.

After the three loading doses concluded, I moved to a new infusion center closer to home. Once again, I paid a ridiculously high co-pay to a doctor who had no bearing on my treatment plan just to get established with his office. This time, it was worth every penny.

If I could go back in time and tell 2013 me something about this entire situation, it would go something like this: This new infusion will make your skin tolerable to sit again. Your insides will hurt less, and you’ll regain some of your freedom once again. It’s not going to be perfect, but this medication will do, for now. This current infusion center’s nurses and doctors are not looking out for your best interests. You will move to a new infusion center and learn you’ve experienced allergic reactions since the beginning with the medication. But the new nurses will help you through. Lastly, learn to self-advocate and speak up!

P.S. If a doctor from the oncology side comes to chat with you, tell them they better not bill you.