Horrible Round of IVIG

I finally got my IVIG scheduled, and the first day (yesterday) was horrific. The first issue was that they wanted me to be there early for a 9:30am infusion. I usually don’t wake up until 10 or 11. Still, I figured I would just sleep it off. I’ve tended to sleep during infusions when I’m not feeling well going in. I was having tachycardia problems yesterday, but again, I just figured it would all even out once the infusion began.

Oh so wrong.

They took me to a room, and there were no windows. It was a bummer since the other rooms had windows, and I was expected to be there for the usual 5+ hours. The nurse unceremoniously cleaned my port, her sterile technique was questionable at best, but she did at least use the proper skin cleaner. I’d have preferred that she clean a larger area, and keep her actual tray sterile, but I’m pretty sure it was at least decent enough to prevent an infection…I hope. The infusion clinic is in an infection disease doctor’s office!

Then it’s time to access my port. Ugh.

Unlike other infusion places, I’m not asked if I want lidocaine first. Honestly it doesn’t bother me, the lidocaine stings just as bad as the port being accessed, but I found it odd. She pushes the needle in, and she gets return and flush. Great, right? Um, not exactly. Instead of having the wings of the huber needle flat against my skin, they’re still sticking straight up, creating a huge tent once it’s taped over. If that wasn’t bad enough, prior to taping it over, when I was explaining that she needed to bend the wings down, she pushed and twisted the needle, which hurt like hell.

You win nurse. I’m not numb, and you’re manipulating a needle in my chest. 

As she’s arranging my pre-meds, she asks if I’m going to want a heparin flush after the infusion. Yeah, I’d like to keep my port from clotting, and since IVIG is a blood product, it’s generally a good idea to flush the port, even if I am coming in a few days later for another infusion. In any event, the pre-meds begin, and I’m surprised to find out that they’re not using a bag for any of the drugs. Everything is going to be pushed. I’m assured that the pushes will be slow, and the nurse makes a joke about how Benadryl makes patients feel a warm rush.

Not exactly.

Zofran goes in, and helps my nausea rapidly. I then decide to do the steroids, figuring the Benadryl will counteract the rush the steroids generally give me. In go the steroids, and my already tachy heart increases it’s beat. Great. The nurse goes and gets the Benadryl, and as soon as she began pushing it, I panicked.

I felt like I was choking on an ice cube, and there was a warm rush through my abdomen and groin.

The warm rush was tolerable, I was expecting it, but the sudden choking sensation terrified me. I honestly thought I was dying in that moment. The feeling was so intense, I figured something had gone wrong, and my heart was shutting down. There couldn’t be another reason for such a horrific feeling. The nurse had a moment of panic because I sat up violently, and began clawing at my throat.

After laughing off the reaction, and telling me that she’d warned me about that sensation, she tells the manager that they need to use a bag next time to give me certain pre-meds. The manager said no, because it would just add to the time.

This was another issue. The nurse and the manager were arguing, complaining about other employees, and complaining about patients, all within earshot of those of us getting infusions. I was told that my infusion should have only taken 2-2.5 hours. Twice as fast as my normal infusion. We did take the full 5 hours, but we hit max rate way sooner than I have in the past. My theory is that we started out at a higher rate than I have previously. That or I had a reaction because my insurance insisted I use another brand of IVIG.

My heart rate wouldn’t cooperate.

I was already 100bpm when I arrived. I began having runs into the 150 range, so they had to stop the infusion for 10-15 minutes. (This just adds to my theory that we were already doing the infusion too quickly.) Due to the issues I had, they told me once I’d managed to finish the infusion, that I’d have to come back on Monday instead of Saturday for my second day.

That’s fun, when you’ve left a screwy needle in my chest.

Exhausted and in pain, I just wanted to get home. I padded the needle as best I could, hoping I wouldn’t move it too much in my sleep. Today I woke up, and the needle was clearly crooked, and bent forward. I knew immediately that I couldn’t keep it in until Monday without risking my port. I took a photo, and contacted my nurse manager for home health. I then called the 24 hour hotline, and they arranged for a nurse to come remove the needle.

It was really messed up.

The needle was so misplaced that I had to help stabilize the port so the nurse could de-access it. To me it wasn’t a huge deal, I’d realized it wasn’t going to be safe until Monday, and took the proper steps. The reality is that the needle was never properly placed in the port. Due to the placement of the wings, and the fact it managed to bend and twist, my port was in danger of breaking. The needle could have broken off into the port.

My nurse manager is going to contact the infusion center because it’s apparently a major issue. I don’t plan on going back after Monday. Monday isn’t something I can skip, I need this treatment to, you know, live…

Which is why it’s terrible that places like this exist.

Knowing I have to go back, because I need to save my nervous system, makes me angry. I  will go back, have my chest port punched oddly without any numbing beforehand, and then I’ll have drugs pushed into my body that make me feel very sick. I’m actually afraid of the Benadryl push. It was honestly a feeling like death.

On the positive side, my gait is slowly improving. I was concerned that the nervous system changes would be permanent this time, but so far it seems like I’ll recover. I’m still worried about my port, and what damage is going to be done on Monday. It’s just something that is going to happen, and I have to trust my team to fix whatever the infusion center breaks.

Horrible Round of IVIG

A Sick Chick’s Thoughts on the Amazon Boycott

It was Prime Day, the summers answer for Cyber Monday or Black Friday, but of course, it’s all on Amazon. Whether it’s being pissed off that the site was frequently down, or that the deals weren’t what you wanted, it’s a guarantee that someone somewhere is upset. There were definitely valid concerns behind the call for a boycott, including how Amazon hurts smaller bookstores and a lot of authors. There were also valid concerns over how the company treats warehouse workers.

So did I boycott? No. 

Yes, I’ve had jobs that sucked, involved tedious work, with a ton of standing, and I’ve had break rooms that are as far away as my break itself is. I also miss seeing little bookshops around town. Whenever I can, I do choose to shop in store for  books. I also tend to read a lot of smaller authors, who may have a series or two, but aren’t always super well known. Sometimes they are, but if the book series is 10 books long, and those books are FREE on Kindle, I’m going to read for free. I will, however, try and buy the first or second book (depending on if there is a sample or not for me to judge how far I’ll get into the series.) The book I buy, I often end up giving away. This ends up not always benefiting the author in the long haul, but hey, I tried.

I’m poor.

I can’t afford to buy every book I read, even digitally, so when I have something like Prime Unlimited, I don’t just want free books, I need free books. If I can afford a book, I’ll buy a hard copy of it. Some books, from authors I know and love, I’ll buy the hard copy because I’ll know I’ll want to share it with someone. I have books that have been passed along so often, I wouldn’t be surprised if one came unexpectedly back some day.

I’m Disabled 

Amazon in general, makes my life possible. I’ll have my roommate get some groceries for me when he’s out, but I prefer to be as independent as I can be. The best way to get groceries right now, for me, is to order them through Prime Now. I have stores to choose from, but Amazon tends to have the best prices. Other items I may need, are also often procured via Amazon. When the world begins to strip abilities from you, you cope. I do hope they come up with a way to make their warehouse employees happier, but I also recognize that a lot of warehouse jobs are just difficult. It’s repetitive, manual labor. There are things that Amazon can do to make these employees’ lives better, and we should find a way to hold them accountable for their actions.

But don’t HATE me. 

Friends were upset when they found out I shopped on Prime Day, but there were a few things I already needed, and they were on sale, so of course I shopped. Many more are still boycotting Amazon, and are irritated that I won’t. I’m writing this, and then I’m placing an order for melatonin. It has been far too hot for me to even use my wheelchair to get to the store and buy things, even little things. I am not a cold human being. I understand that the employees are unhappy, and that a giant company is squashing smaller business through just sheer domination of the market. I also understand that I have needs as a human that this giant dominant entity is capable of providing me with

You do you. Boycotts are great, and walk outs are great, too. Attempting to unionize, pushing for certain legislation, all good ways to make a statement. Just don’t come down too hard on the people who opt not to participate. Some of us need companies like Amazon, because we aren’t physically capable of getting through our sick people lives without them.

A Sick Chick’s Thoughts on the Amazon Boycott

Paging a Doctor…Literally Any Doctor

My new rheumatologist told me that IVIG was approve, but that they needed to find an infusion center. Fair enough…except that IVIG isn’t approved. I called my insurance to kindly point out how serious the situation was regarding IVIG, and they told me that they had nothing on file aside from my prior IVIG.

Well fuck.

I left a message for my new rheumatologist yesterday, pointing out that the neurological symptoms are coming back, which is bad. The last time it happened I was left with permanent issues. It changed the entire course of my schooling and career. Now I’m trying to focus on a thesis, when I can’t stay awake for a full hour.

Example: I just typed our instead of hour. I wish I could say that it wasn’t a common occurrence, but it is. I also don’t do super when it comes to identifying objects. I’m not in the stroke range, thankfully, but I did get to go through stroke testing because of how bad I was doing the other day. 

As if all of this weren’t enough…no IVIG on time, means I’m walking around with an inflated port. The ER doctors told me I could go to six weeks, but I was told VERY adamantly when I got the port, not to go longer than 4. With vasculitis it was suggested 3 weeks was ideal, but 4 was the maximum I could/should go. Since I was getting infusions of fluids more often, it didn’t make a huge deal, but now it kind of sucks. My hope had been to do needles during the week, giving me weekends off, but that obviously requires home nursing.

Which my insurance denied from my primary care doctor…but also hasn’t approved through my specialist. It’s cool, I’ll just have this time bomb in my chest.

My primary care doctor responded today, and I’m to go to the ER ASAP because there is a chance that the port is fully clotted by now, and  could therefore need to be removed.

Yeah, the think I juts had implanted two months ago, to make life easier, may now have to come out, because doctor’s and insurance companies can’t get on the same page.

I’m trying to be as zen about this as possible, but honestly? it really sucks. All I can do is sleep, and even that isn’t the most restful thing. I wake up nauseas, or super adrenaline filled. I fall asleep on the couch, while sitting, just however and wherever. I can feel my body giving up.

Neurologically I’m having more muscle spasms and shaking. I’m so terrified it’ll be like it was a few summers back. I don’t want to end up spending a long time in a hospital, losing total coordination, and having to rely on nurses every time I wanted to do something as simple as go to the bathroom. At UCSD I was able to convince the doctor to allow me to use the actual toilet, instead of a catheter or bed pan, as long as I had a nursing escort. Sharp isn’t that kind. Even when I can walk, they don’t feel it’s worth the risk.

Another reason it’s not a good time to go into the hospital…July = all the new doctors. Nothing like having a rare condition with a bunch of inexperienced interns. 

I really just need this port flushed, and some steroids. Some IV steroids would be stellar. The only other thing I can think of is begging my new rheumatologist to give me something to suppress my immune system while I wait for IVIG. That or some major steroids. I started back up on them today, because the symptoms didn’t become significant until I discontinued them. Regardless, it’s time some doctor stepped in and recognized how bad my current situation is.

Behcet’s is sneaky. Your labs look great, and doctors think you’re exaggerating…until all of a sudden you’re seriously ill. I told everyone for months that I was deteriorating, two summers ago. Eventually I couldn’t move without violently shaking, and I still was treated like I could just “stop” doing it. It wasn’t until they checked my reflexes, and checked my pupils, that everyone finally realized I was in trouble.

My pupils were super dilated a few days ago, but thankfully it was attributed to a nausea patch I’d used. (Meant for sea sickness, but I was hoping it would help my overall nausea.) They’re still dilated, but at least they’re reactive and equal. Unfortunately they’re still dilated and that isn’t ideal. I can’t do anything, though. I’m stuck calling doctors and asking for help, when I know there isn’t help to be found.

Paging a Doctor…Literally Any Doctor