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In this episode we’ll go through getting an infusion

infusion noun
the slow injection of a substance into a vein or tissue.

Google Dictionary

I was due for my Rituxan infusion, my primary multiple sclerosis (MS) medication, on January 4th.  I called a week ahead. I needed to get bloodwork at a lab and approval from the insurance company.  The bloodwork was no problem but the approvals were difficult. I had to be persistent. Before I knew it, I was already a month and a half late.

I worried that I wasnt getting the medication i needed.  I fell a few times. I was living in a fog.

I had the infusion yesterday.  I feel about the same.

Transcript


JOHN HOPPIN: Welcome to the What’s The Matter With Me? Podcast, season three, episode three, Infusion.

My name is John. I’m 39-years old, husband, and father of two. Small business owner, radio DJ, podcaster, and I have multiple sclerosis, so I made this podcast to share what I’m going through.

What’s The Matter With Me? is an MS podcast, and it’s also about other things. Past episodes can be downloaded on Apple Podcast, from Whatsthematterwithme.org, or wherever you get it.

I’m not a medical professional. Don’t take this for medical advice. If you need medical advice, ask your healthcare provider.

All right. Season three, episode three. In this episode, we’ll go through getting an infusion, getting medication by infusion. Let me check this out. What’s it say? Infusion is a medicinal term. The slow injection of a substance into a vein or tissue. So, that happened to me the other day. We’ll talk about it, but first, I’ve got to give shout outs.

Shout outs to Rocky. Always to Rocky like I said I would. And shout outs to [Nomi 00:02:00] for going to MS Breakthroughs with me. I bet it was weird. And to Eric and Tracy for letting us invade their house. We went to Sacramento last week. You’ll hear about it in an upcoming episode, so stay tuned.

Infusion. Okay. I was due for, I take Rituxan. It’s my primary MS medication. I take it by infusion, and I was due for it on January 4th. I called about a week ahead, and I had to get blood work at the lab, and approval from the insurance company. Blood work is no problem. You just head down to the lab, they draw your blood, whatever. Chop chop. All done. But the approval was difficult, and I had to be persistent, and before I knew it, I was a month and a half late.

You know, I’m supposed to have this every six months. You know. I was going to have the infusion here. Maybe there. But the bottom line is, I’m late now. I’m starting to worry. You know? And be like, yo, I’m supposed to have this thing every six months, now, it’s seven months. I’m worried about I wasn’t getting the medication I needed. I fell a few times. I had fog, like in my brain, in the afternoon. I couldn’t think of anything. Or in the morning, or really, at any time. I had no energy. I felt like I was totally fogged up. And I’m like, “Is it because my medication is late?” You know. It’s impossible to tell.

But finally, yesterday, I had Rituxan. My wife drove me. It’s in Palo Alto, so it takes like 40 minutes, 45, to get there in the morning. My wife drove me there. She worked remotely from the room where I was getting infused.

It’s a long one. You’re hooked up to the IV machine for over four hours. They give you precursors. I’ll tell you about it. It’s kind of crazy. It’s similar to traveling in that you’re just inactive, but totally drained afterward.

I sat in a big chair. They gave me steroids and Benadryl for the precursor. That’s to reduce chances of infection. They give you all this stuff, but the effect from my end is, like, I’m all pumped up, and also, I got knocked out. So you feel this oncoming rush of steroids. You fill like you can chew through the table in front of you, but then the air gets all thick and gooey. Things get weird, and the medicines like fight each other. It’s a really odd feeling.

It feels cold in your vein. You can feel it at the injection site. They’re pumping you full of this stuff, especially the precursors where they just kind of inject the whole thing at once. Infusion is kind of a slow process, but when they start it off, they give you these big vials of Benadryl and Solu-Medrol, and it makes it cold in your arm. You can feel it. Cold in my veins.

The nurse put an instant heat pack over the IV, and it was warm, and it felt good. I had seen her before. She was from Honduras. She had nice braids. They were kind of intricately woven, but kind of sculptural in the way they piled on top of her head.

I was hooked up to the bag dangling from the infusion pump to go for about four hours. My wife worked from a small chair with one of the bedside tables pulled up as a desk. She had her earphones in. She was on a call across from me, and I kind of fell asleep, I guess.

I woke up at some point. It was the afternoon, a few hours later. My wife had picked up some food from a stir fry place, some meat, vegetable and pickles over rice with garnishes like caramelized onions and sliced hot peppers.

The nurse came in every few minutes to check my blood pressure and temperature, or to check the infusion machine was still dripping, chugging along.

A volunteer reiki master appeared, and she asked me if I wanted a reiki session. I was scared, but I also thought it could be awesome. So I put down my food and my phone. She said, “You don’t have to.” And I was like, “No. Forget it. I’ll put this stuff down. Let’s focus on this.” She came behind me and moved her hands lightly over my shoulders, my head, and to my shoulders again. It was very relaxing and made a welcome contrast to the circumstances.

Usually, I’m pretty skeptical about things like that, but I’ll try to be more open-minded in the future or, at least, that’s what I was like, “Should I get this?” I should try and be more open-minded. It was pretty good.

The nurse came by again to check on the IV line a few times. Finally, she told me I was getting close. Nomi was down the hall interviewing someone. She does crazy work. She could do anything anywhere, I think. The nurse removed the IV and wrapped my arm in a purple bandage. I was ready to go.

Nomi came back. “Arrivederci,” I said to nobody in particular. We drove home to San Jose. Took about an hour from Stanford, Palo Alto. We finished up at rush hour time. I was glad to have Nomi with me for all the help and support, driving me back home. It was amazing. The whole process is taxing. It can be hard driving around, and to have some support is really valuable.

So that’s it. I really got hooked up to this machine. They infused me for a long time. So, that’s kind of it. I want to tell you how it goes. You’re kind of like pumped up. They give you lots of drugs. It’s weird. You pass out. You wake up. Then it takes forever, and then you feel drained at the end. That’s infusion.

So, thanks for listening to season three, episode three of the What’s The Matter With Me? Podcast. Find other episodes at whatsthematteriwthme.org, iTunes, or wherever you get your podcasts.

Check out more of this cool music that I make on soundcloud.com/john-hoppin. J-O-H-N dash H-O-P-P-I-N. The worldwide universal sponsor Hoppin Hot Sauce, it’s a movement. Makes every plate taste great.

Hoppin Hot Sauce. It’s the best hot sauce. Hoppin Hot Sauce. It’s the best sauce in the world. The world, I’m telling you.

Check it out. Hoppinhotsauce.com.

Season three, episode three in the books. Thank you for listening to the What’s The Matter With Me? Podcast.

Drawing

What’s The Matter With Me? Podcast, Episode 8: “Big Week”

My name is John, I’m 38 years old, husband and father of two, radio DJ, podcaster, small business owner and I have MS (Multiple Sc;erosis). I made this podcast to share what I’m going through.

Recap Episode 7: “Bread Moment”

It was very hot, and now it’s rather pleasant. I’ve been having a peaceful week with my wife because when it’s hot I am grouchy. I also told the story of being afraid of Chad Robertson, my bread hero. I baked bread by this guy Chad Robertson. One day I was at a restaurant and I was with somebody who was kind of hooked up and the waiter was like “hey over there is Chad Robertson want to meet him?” And I was like “uh, it’s cool.” I was scared to. I was intimidated, man. Anyway, he makes great bread. It’s a hard story to tell, a time when I didn’t live up to my own standards. Anyway episode 7 check it out.

Big Week

Last Tuesday I got my haircut, my beard shaved, lined up. Elvis at the barbershop did me all right. I was getting ready, I had a big week, so let’s go.

MS Doctor

Later that day I saw my MS doctor for my annual checkup. We reviewed my MRI, and I am in radiological remission, which means nothing is showing up on my MRI, which means I’m not getting new brain lesions or other disease activity that the MRI scan can see.
Then we took a trip through my brain, it was kind of cool. My doctor was like, “Okay let’s look at your MRI. This is how it works top down.” He starts going through the images, wow.
We took a trip through my brain. My doctor noted that my cerebellum is pretty clean. That’s like the top of my green, the big brainy part. But my brain stem has a lot of lesions, and they are old lesions. They affect my ability to walk, swallow, get up and talk actually. All the stuff I know because I experience it but it was interesting to learn that is caused by lesions in my brain stem.

Rituximab

We’ve decided to continue my current treatment which is rituximab, that I take in a 4-Hour infusion every 6 months. We were all shocked to learn I was about six weeks late for my rituximab infusion, and I guess it fell off the table. After the appointment, the staff and I scheduled it I’m going to have an infusion on Friday in a couple days time. Even though we scheduled at the last minute, they hooked me up. Stanford, shout outs.

The studies on rituximab are 18 months long. I haven’t reached that time yet so we’re going to continue my treatment, even though obviously I’m not healed and I’m still experiencing walking swallowing and thinking problems, among other things.
I told my doctor about this podcast, I told him to check it out. He was pretty stoked actually. I told them that I do this for my own therapy, to get better, which is why I do it, it makes me stronger to do so I love sharing. Boom! I’m stronger now.

Then on Wednesday, the next day I got a new ankle-foot orthotic brace which helps me walk, and not sprain my ankle and have balance. It’s good!

AFO: Ankle-foot Orthotic

But it was kind of a mixed bag. I wore the new ankle-foot orthotic, they call it an AFO.

begin transcript

What’s the Matter With Me? Episode 8.

Yeah. It’s “What’s the Matter With Me?” Episode 8. My name is John. I’m 38 years old. I have MS. I made this podcast to share what I’m going through.

Recap episode 7, it was very hot. And now it’s rather pleasant. I’ve been having a peaceful week with my wife because when it’s hot, I am grouchy. And I also told the story of being afraid of Chad Robertson, being my bread hero. I baked bread by this guy, Chad Robertson. One day, I was at a restaurant, and I was with somebody who was kind of hooked up and the waiter was like, “Hey, over there’s Chad Robertson. You want to meet him?” I was like, “Uh, it’s cool.” I was scared to. I was intimidated, man.

Anyway, he makes great bread. It’s a hard story to tell, a time when I didn’t live up to my own standard. Anyway, Episode 7. Check it out. Last Tuesday, I got my haircut, my beard shaved, lined up. Elvis at the barber shop did me all right. I was getting ready. I had a big week, so let’s go.

Later that day, I saw my MS doctor for my big annual check-up, and we reviewed my MRI, and I’m in radiological remission, which means nothing is showing up on my MRI, which means I’m not getting new brain lesions or other disease activity that the MRI scanner can see. Then we took a trip through my brain. It was kind of cool. My doctor was like, “Okay, let’s look at your MRI.” He is like, “This is how it works, top-down.” He starts going through the images. Wow.

We took a trip through my brain. My doctor noted my cerebellum is pretty clean. That’s like the top of my brain. The big brainy part. But my brain stem has a lot of lesions, and they’re old lesions. They affect my ability to walk and swallow and get up and balance and talk, actually.

All the stuff, I know this stuff because I experience it, but it was interesting to learn that it’s caused by lesions in my brain stem. We decided to continue my treatment, which currently is rituximab, that I take in a four-hour infusion every six months. We were all shocked to learn I was about six weeks late for my rituximab infusion. I guess it fell off the table. We scheduled it up. I’m going to have an infusion on Friday, in a couple days, scheduled last minute. They hooked me up. Stanford shout-out.

The studies on rituximab are 18 months long. The study’s in. I haven’t reached that time yet, so we’re going to continue my treatment, even though obviously I’m not healed, and I’m still experiencing swallowing, walking, and thinking problems, among other things. I told my doctor about this podcast. I told them to check it out. He was pretty stoked, actually. I told him that I do this for my own therapy, to get better, which is why I do this. I share this story because it helps me, makes me stronger to do so. I love sharing. Boom! I’m stronger now.

Then on Wednesday, Wednesday, next day, I got a new ankle-foot orthotic, which helps me walk and not sprain my ankle, have balance and stuff. It’s good. But it was kind of a mixed bag. So I wore the new ankle-foot orthotic. They call it an “AFO.” I wore the new AFO on Wednesday, and it’s not quite the right fit. It’s too tight on my ankle, and it caused a very severe pinching, shooting, piercing nerve pain that is too much to ignore. So I haven’t worn it since I got it because I wore it for a few hours, I started having pain. I was like, “No more of this.” And I need to go back and have the orthotician, Miguel, do some adjustments before I can wear it again, but it’s a new brace, and it’s clean, and it looks better than my old one, and while I was in the orthotics place, they fixed up my old brace to give new straps on it. It looks less janky.

You know, just imagine if you had to wear a shoe every day. It would get janky after a couple years. What janky means is, you know, it just … Look it up, man. So hook me up with that. I’ve got to give a big shout-out to Miguel at the orthotics spot near Menlo Park. They hooked me up with a new look brace. Even though the new one isn’t quite right yet, the old one looked so much better. Thank you, Miguel.

Then on Thursday was my radio show. I looked over the playlists. I played a lot of very questionable music from other time periods like the late ’80s and early ’90s, in which we had a different view of world music. Like anthropology had a different goal. It was like, “We’re in this music. Listen to it.” And they kind of changed it in a way that I think today they wouldn’t allow. They got their hands, like Peter Gabriel and people, got involved with music. They did something awesome, and I love playing it, but it’s questionable.

It was very questionable and complicated, not resolved, all the things I enjoy very much, though. The show was good. Then I went to talk therapy after my show, and we talked about poverty pretty much the whole time. My therapist had been to a conference in Sacramento, and he rode his mountain bicycle through Sacramento, and he saw so many homeless people sleeping on the ground with their bodies pressed to the cement, in like 110-degree heat.

And right now, I’m reading Paul Collier, The Bottom Billion. The theory of The Bottom Billion is that there are one billion people being left out of the developing world. And it’s causing problems for our world, the developed world. For example, the people, there are people in Nigeria and Kenya, failing states, and in Afghanistan and Somalia. So it’s not quite a place. It’s like Africa plus, he describes it.

Basically, generally, he says that we have beautiful nature. We have invented technology, and we have law that makes things fair. So nature, plus technology, plus regulation equals prosperity. And, you know, if you don’t have these three things working together, you can have plunder and starvation. If you don’t think about it, if you don’t have laws, then you just have plunder. People take what they can. And if you have stupid laws getting in the way of the wonderful technology we’ve made, you’ll have starvation because there’s too many people in the world.

And on Sunday, it was my wife’s 40th birthday, my beautiful wife. And we have a bocce ball place in Fremont. There was a brunch buffet and bocce ball. It was good to see everybody. A lot of friends, kids running around. I loved it. Some friends I hadn’t seen in a year and their kids, and my wife looked beautiful, captivating, as always, on her 40th birthday. I’m a lucky man. I love her, and we have a strong bond.

Yesterday was the Fourth of July, and we barbecued hamburgers and hot dogs and vegetables, and my wife made some cole slaw, and everything was wonderful and beautiful. The garden looks great right now. My wife had a birthday party, and conversations made note because of social media, you don’t see people as often, and I got self-conscious. I started thinking, “Oh, am I shocking because I’m disabled and I have a cane?” And I don’t really feature that in my newsfeed.

But the point of what they’re saying is probably that it was good to see people because it was. That’s “What’s the Matter with Me?” Check it out.

Yo, next time!