The Longest Day

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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.

21 thoughts on “The Longest Day”

  1. I’m glad you did it because I know you will feel better now.
    The process sounds a lot like the genetic infusions I had to her pre transplant to suppress an antibody. Long and boring, 8-10 hours.
    I hope you recover quick my friend

    Liked by 2 people

      1. I don’t have a car. I live in Munich, remember. Only one third of the people have it. You just don’t need it here. Besides, Europe is all about buses and trains, besides planes.
        I was hoping 6, but after 10 days I’m not even close to healing.

        Liked by 1 person

    1. You are SO good for my ego Sue. Yeah, the isolation will suck but at least I can go in my yard and enjoy the outdoors. Besides, it isn’t like I wont go anywhere. My pilgrimages to the MMJ dispensary is a must. Maybe a quick one to the package store too, but not for at least a couple of weeks

      Liked by 2 people

      1. Enjoy your beautiful back yard and nature and maybe write a bit, if you feel so inclined!!! We stocked up at the Dispensary yesterday; it felt glorious to finally be out of pain for half an hour last night.

        Liked by 2 people

  2. Well…shoot. You all, floweringink, Bojana, and Billy are examples of endurance and hope. I don’t know what I’d do in the shoes of any of you. I hope all goes well for you Steve and the side-effects are minimal.

    Liked by 1 person

  3. I have vein issues as well. I’m normally stuck more than once and they seem to always do that digging maneuver. 22 years later and I’m still scared of needles. I can’t look at them before or during the time the go in. I turn away. Only when I was doing Betsseron before the auto injection did I ever see the needle going in.

    Liked by 1 person

  4. Came to you via Billy’s blog. Sympathise about the veins running for cover. My body doesn’t give up anything without a fight and blood is no exception. I’ve always been healthy, then diagnosed with Type 2 diabetes in 2011 (no meds, all controlled by diet thankfully) and in 2016 got my first strike with breast cancer. 2019 saw it raise its ugly mug again, but I’m OK, though anxious about the first of my new mammogram set taking place due to C-19. Glad you only have to have this twice a year. Keep safe.

    Liked by 1 person

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