The Longest Day

After three months of procrastinating, I finally I had my Ocrevus infusion today, and I am glad to have made the decision to go forward with it. Having said that, I forgot what a looonnnnnnnggggggg, dreary, boring, day this is.

The day starts with me leaving the house at 8. By 9 I’m in the unit and getting prepped for procedure number one, the plasma transfer. This usually takes about fifteen to twenty minutes, as the nurse has to get all the gear ready, scour each arm and hand to find a plump vein to plunder, insert the needles and get them secured, then start the centrifuge. I’ve been doing this for years, but I still get apprehensive when it is time for the needles. I don’t mind it if they stick me, then have to withdraw because the vein was playing hard to get, and try find another one. But what makes me cringe is when they have the needle in and haven’t found pay dirt, but think they are close. When that occurs they usually move the needle around while it is still in the arm. They are very careful, of course, but it is uncomfortable and I’ve been zinged a few times when they moved it a little too far or deep. When we are ready to rock and roll, the set-up it looks like this.

The procedure takes an hour and a half, but can go as long as two hours if there are complications with the blood flow. About a gallon of blood is filtered through the centrifuge, and the plasma is removed and replaced with six bottles of albumin, which is a blood product. The process is boring as hell because there is nothing to do but wait for it to be over.

My inclination is to fall asleep, but that isn’t possible because I have to periodically squeeze a rubber ball in the hand that is on the picture on the left. That is where the blood leaves the body to enter the centrifuge, and periodic pumping helps with the flow and makes the procedure go more quickly.

The thing is I can’t move the arm on the left because if that needle budges a millimeter the machine starts beeping and the nurse has to play with the needle until the beeping stops. And if I adjust my body too much the same thing can happen, so I have to be as still as possible. That means no book reading, perusing my I-Pad (impossible with one arm and limited movement) and morning television absolutely sucks.

I need to hydrate in the morning to help fatten the veins, but have to time it right so my bladder is empty by the time I am hooked up. Having to go pee with a needle in each arm and limited ability to use them makes that process very tedious and potentially messy. Fortunately, I got it right this morning. No urge to pee, and the nurse found a vein on the first try in each limb. This is not uncommon, but I didn’t feel so much as a pinch when they hit their target, which is rare. I can always tell how easy or difficult a time the nurse had by the amount of bruising that occurs the next couple of days. There will be none this time, but there have been others where the puncture wounds are surrounded an impressive display of red, blue and purple before turning brown, green and yellow until it disappears in about a week. 

When the transfer is done, the needle and tubing from the arm on the left is removed, the tubes are disconnected from the needle in the arm on the right, and I can finally get up to empty my bladder. Then the bag with the saline solution and Ocrevus is hung from an IV pole, tubes are run from the bag and into the port that protrudes from the needle, and the slow drip starts.

How slow? Between three and three and a half hours. But at least I can have lunch, nap, which I usually do (but not for the entire afternoon), and can read the paper and other sites I frequent on the I-Pad. All the while my blood pressure and other vitals are periodically taken. Still, there are periods of time within the afternoon where there is nothing to do but watch the clock tick.

By three thirty, the meds have been dispensed, all the needles are removed, and the gauze and ace bandages are affixed. But now comes the worst part: being placed on observation for an hour to make sure there are no immediate reactions. That hour is the longest of the day, and by then a unit that was bustling with patients and had every chair filled is practically empty, as you can see from the picture that leads this post.

My ability to leave got a little complicated today when my final temperature read 100.5 and a few folks became alarmed. But then the thermometer was placed under my armpit instead of under my tongue. That temperature was normal, and I was allowed to leave at around 4:45. I didn’t get home until 5:30.

I literally opened and closed the place, which is typical. If you start from the time I left home to the time I returned, it took nine and a half hours out of my day. Thankfully I only have to do this twice a year. I can’t imagine what it must be like for dialysis patients who have to go through something similar three or four times a week. I think I’d lose my mind.

I’m glad it’s over, and I don’t have to think about it again until late December. Now all I have to do is get through these next two days when the med’s side effects kick in. It’s later in the evening and I’m already starting to feel the warmth and fatigue.

I have a feeling the side effects are going to be worse than what I remember because it has been over nine months since my last infusion instead of the normal six. The doc on staff agreed with that assessment, explaining that the extra three months allowed more B cells to replenish. This means more will die off once the Ocrevus does its thing, which will lead to more pronounced symptoms like crushing fatigue and disorientation. My neurologist said I will be most vulnerable to the COVID virus over the next eight weeks. That’s a long time to be reclusive, and pretty much kills my summer.

The things we do to try to stay healthy. 

Author: Steve Markesich

I am loving husband, a doting father, a Red Sox fanatic, an aspiring novelist and MS advocate. Feel free to check out my stevemarkesich.com web site. View all posts by Steve Markesich