The promised post about Zarxio

Photo by Raghavendra V. Konkathi on Unsplash

It’s been a rough couple of weeks with back pains and malaise. I spend a lot of time looking out the window and watching the birds. The only activity I have done is walking around the building a few times. I want to be able to walk on the beach eventually and not get tired every few feet.

To really explain why I’ve been in this mood and possibly health, I should get to the beginning.

In the middle of March my WBC (White Blood Count) labs showed that it had dropped significantly. It was enough that my transplant doctors decided that I needed help with my immune system. Since I had reached five months post transplant and two of my anti-rejection meds had been reduced, my immune system should have been doing its job. With the WBC suppressed, it couldn’t.

First my doctors had to get permission from my insurance company to have the shots. These are specialty shots that cost 1,000 dollars a shot. Sometimes the insurance won’t pay for it, so they have to come up with a secondary way to bring up the WBC count.

Lucky for me, my insurance actually decided that I could have the shots. Plus the co-pay was actually decent. So I picked up the box of five, had my labs done again, and started the shot sequence.

The first shot was done by the nurse. She showed me how to do the shot myself in my abdomen. If you have never given yourself a shot, it can be a little scary. I learned to pince the skin on the left side of my abdomen and the shot needle was so small that it slid right in. The hard part was to push the plunger because that is when it hurt—when the medication goes into the subcutaneous fat.

The nurse warned me to take a tylenol before the shot and claritin or in my case benedryl because the shot was known to release histamines. I was also told to take only three shots. Plus if I had a high fever (around 99 degrees) then I should go to the ER—preferably UMC ER because that is where I had my transplant.

So far so good. I was my normal cheerful self— I’ve worked on being positive the entire time, but I was in for a shock.

The day after the first and second shots were fine. Since I was taking benedryl, I did sleep a lot, but I didn’t notice anything about my usual self. Others may say differently though.

After the third shot even after the benedryl, I started to feel pain in my back. At the time I had started to go from 2,000 steps a day to 3,000 so I thought I wrenched my back. I did heating pads and ice pads. The back would numb for a moment and then I could feel it ache again. I did sleep that night.

The next day I woke in agony. My head hurt, both shoulders hurt, my back hurt from my neck to the end of my spine, and the nerves in my back were sending sharp pains all through my body. I forced myself to stand and found that I could stand without too much pain, but whenever I sat or laid down everything would hurt. I checked my temperature. It had risen a slight bit. I’m normally a 97.4 and it rose to 97.6 so it wasn’t hospital time. I was sure I did something to my back.

I put on my back support brace and it seemed to relieve the pain a little. I went through calm and then bouts of pain every couple of hours and nothing seemed to work for the pain. Tylenol didn’t help one bit and I’m usually very sensitive to it.

I tried to divert my attention from the pain by looking at my projects such as going through boxes and throwing away crumpled paper and plastic. I was shocked at how much I had “hoarded” while my brain was on two “dying” kidneys. But each time I looked at them, I couldn’t understand what the point was. Why was I doing this? What was the meaning of this? Why am I here? What is the point?

That last question bouncing in my mind shocked me. I rarely find anything pointless. Finally I remembered—What was the new thing that was introduced into my system?

Zarxio.

Okay so I didn’t do my due diligence. I didn’t look it up and check the side-effects before using. After being a patient for twenty years that is an unforgiveable sin.

Live and learn.

It shocked me that Zarxio has several…. I repeat SEVERAL side-effects. Every side-effect I had from the malaise to the aching and shooting pains were side-effects. The only thing I could to was take a does of Benedryl and sleep.

When I woke up, I took another one.

The next day I had no twinges at all. I didn’t even feel weak. I still had some of the malaise—cue not being able to write—but I was a little more optimistic.

*****

On clinic day I told my nurse that “we needed to talk about the side-effects from the shot.” I guess I was using my authority voice because he stood in front of me at attention. I told him what happened with the shots. The pains, the nerves and the malaise. At each symptom his smile got bigger and bigger.

I was a little shocked because I thought by his grin and movements that he was going to break out into song and dance. Oh yes— I was kind of perplexed.

Then he said, “You don’t understand. Most people end up taking two courses (10 shots) of these shots because they have no symptoms and their immune system doesn’t respong. Yours responded after 3 shots. Keep the other two in the fridge.” Then he danced out of the room.

The doctor who I have never seen smile in five months came in with a huge smile on his face. He said, “I see the shots work.” Then he went through my meds and tried to get me on prednisone again.

That’s a big NO for me. If you want to know why, let me know in the comments. It was a worse journey than the Zarxio shots because it lasted six months.

As for the ingredients of Zarxio, it is made from E. Coli and not comes from plasma. It’s a very interesting concept that reminds me of certain vaccines. I won’t go into it here.

I’m very grateful that I didn’t continue with that level of back pain. Since I started my walking I have been very stiff, but nothing like this.

Surely this is an example of a negative experience turning to a positive. They took my blood and my WBC jumped 3 times the original number.

Still I don’t want a repeat of the experience.