Living with Rheumatoid Arthritis: Infusions, Phlebitis, and Self-Advocacy
"Ouch Sorry I didn't mean to jump like that. The pain was unexpected." The infusion nurse Kay (not her real name) said, "that's okay, we don't need to flush the rest of this saline." It was the end of an extremely long and stressful day. Let's start from the beginning.
There I sat in the chair, cheerfully ready to greet a long day. Kay checks me in and hands me the lunch order form. It is Rituxan infusion day and I'm ready to get some B-cells depleted. Symptoms had begun to return after a lovely remission and I was anxious to get to that point again.
Kay got the supplies ready and prepared to get an IV started. I had promised myself at home that I would not let her try to stick me again. Her track record was 0/4. And my previous visit took two nurses and six sticks to get an IV started.
"Who was the other nurse which the head nurse tried to call last time but wasn't here? Can we call her to get the IV started?"
"Oh, she's really busy. She wouldn't be able to come down here for this," says Kay. Darn it if I let her try three times to get an IV started. That's 0/7 now; and yes, I'm keeping track.
Kay calls an oncology nurse down to assist, apparently best in the department. On her 2nd try, she gets a line started but my vein threatens to blow even with the slightest pressure. This was where the previous IV had been and my wrist was still a mess. It was a no go.
The head nurse arrives and tries three times unsuccessfully. That's eight tries so far on this one day. I'd brought my own heating pad in hopes that it would assist in plumping up these veins. Doesn't seem to work today.
The nurses keep talking about how I should really consider getting a port. Dammit, I don't want a port and I don't really need a port. I have veins and I just don't understand why these nurses have so much trouble. The nurse who infuses my steroids during MS relapses is 6/6. I keep trying to point out the "good" spot.
The head nurse from ICU is called. By this point I am quietly emotional. It has become difficult to keep smiling and cheerful. When the ICU nurse arrives, she takes her time looking for veins and talking to me. She calls someone in her department to bring the "vein finder" which has an infrared light that highlights the veins hiding under the skin.
My hands are ice-cold now even with the heating pad. She takes her time. Then after a little while literally holding my hands, she calls her department again. "Please send [the very best pediatric ICU nurse] down to the Infusion Center," she says. "I need a little help."
The pediatric nurse takes her time and finds a vein she likes. She had not been left too many choices from the previous eight tries. Together they get an IV started and it's a nice gushy vein. I cried with relief. I wanted to hug them both. I really don't need a port, I just need good nurses.
That was nine sticks to get one IV started. NINE STICKS. The infusion itself goes uneventfully. However, the saline flush at the end hurts like the dickens. OUCH!!
"OK, we don't need to finish the saline. That should be good enough," says Kay. Damn, that really hurt. Even made me jump, but I'm ready to go home now . It's been another long day.
Growing Problems in the Veins
The next week or so, I notice some lumps and hard spots in the vein used for the 1st of two infusions. Very weird; it almost looks like blood clots with the vein "missing" in between. Then days later, a vein on the back of my left wrist (from the 2nd infusion) becomes hard and "ropey." I didn't know what ropey meant at the time, but I do now.
I ignored the growing problem in my veins. The one on the left was tender and painful to touch. I tried looking for information about possible vein problems with Rituxan but found none. I did find that some patients receiving chemotherapy develop phlebitis. Warm compresses and NSAIDS seem to be the home care of choice.
So I tried warm compresses for several days. It seemed to barely help, but then not. A month later I was really starting to get grumpy about the pain. This was definitely not normal. My mom asked me, _"when are you going to call your doctor?" _
I put it off thinking that the situation would improve. Well, two weeks ago I broke down and called my rheumatologist's office and spoke with her nurse. After talking to my doctor, the nurse called to say that she wanted me to be seen by either her or my primary care physician. Whoever could get me in the soonest.
Next day I'm in my primary care doctor's office and show her my veins. Her reaction gave me some relief that it was appropriate I came in. Although the area was not red, streaked, or hot, it was very much ropey for the same length as my thumb. Some parts were slightly squishy.
She prescribed an antibiotic and continued warm compresses. My doctor also said, "don't let anyone get anywhere near these veins for six months. It will take time to fully heal."
Only two days after starting the antibiotics, I noticed a positive change. Indeed I must have had not only inflammation but an infection with my case of phlebitis. Yuck!! Especially for someone on multiple immune-suppressing and modulating medications.
Advocating for Yourself
The more I thought about it, the angrier I got at Kay. My primary doctor validated my thoughts that the nurse had blown my vein during the flush and infiltrated the surrounding tissue. This would explain why she didn't continue the saline flush after I was made breathless from the sudden pain.
I've given this hospital infusion center four tries now. I am not impressed. In fact, I have begun to notice how the care seems careless and rushed. If my IV speed needs to be slowed down due to a negative reaction from my body, the nurse seems to take it personally and get slightly huffy. Hey, it's my arm which is hooked up to the machine, and it's not like I want my day to last eight to ten hours.
In talking with my rheumatologist, she has agreed to send my next orders to a different hospital in town. I will see if my experience is greatly improved in November. I had thought about changing this May, but didn't push.
We must learn to advocate for ourselves. It is not easy to do, especially when you are being used as a human pincushion. I really should have insisted that help be called BEFORE allowing Kay to try yet again to unsuccessfully get an IV started.
Starting fresh next time, I can inform the infusion nurses at the new hospital that I have difficult veins to get started. I will request the best pediatric ICU nurse to come get my IV started. Now I have a medical reason to point to - "I developed phlebitis in two veins last time."
I WILL speak up for myself!!