Plasma Exchange: A Week of Death and Vomit

Another week, another few rounds of treatment. This week as been no where near as dramatic as the past week, health wise.

I lost two members of my family this week, both very unexpectedly. They are extended family members, but it’s still been tough. They were both very unexpected deaths, so I have spent a few days in shock. After the news of the first death arose, I thought that my week couldn’t get any worse. But it did. With the news of the second death, I could feel my digestive system beginning to flare. I can feel my Ulcerative Colitis beginning to flare. I’ve had to manage my emotions with meditation to ensure that I don’t fully flare up and thus reverse all of the progress I’ve made. Chronic illness makes everything a lot more complicated than things already are.

I unfortunately missed both funerals, and my parents missed them because of me. I had treatment booked during the first funeral, so my mom was unable to attend as she had to take me for treatment. The second took place over the weekend, but it was a plane ride away. There’s no way that I’d manage a quick weekend trip and not flare up, and they didn’t want to leave me. I’m kind of a handful. It takes a team to take care of me. They didn’t mind at all though, and they’ve never ever made me feel bad about missing out on things because I’m not doing well. My brother and I are their number one priorities in everything that they do.

Here is the tale of my 3 treatments of the week. I’ll admit, the first 2 treatments weren’t too eventful.. but day 3 was pretty damn intense. And vomit ridden.

Treatment 1 of 3
My first day of treatment was early Monday morning. I got out of bed and it was FREEZING. It’s June, why did I have to wear TWO sweaters and thick roots sweatpants to leave the house? Yeah… this weather is quite unusual. On just Friday, it was hot and I needed to turn on the A/C… and on Monday we needed the heat. The world is a strange place.

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My dad took me to treatment and it went quite well. I look exhausted, mostly because I was. Things went well, I was out of there rather quickly. I saw my Hematologist, and he realised that he’s the one who is managing my case at this point. No one else will deal with my pain and other symptoms. They’re all too afriad to try anything. I get it, I am a complicated, fickle patient, but I do need care nonetheless. Although he is overwhelmed, at least this doctor is willing to truly help me.

Treatment 2 of 3
The treatment itself went quite well, but after the treatment, things went downhill quickly.

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This was the funeral day, and I really wanted to be with my family after the funeral, but I couldn’t manage. The nausea was horrible. The fatigue was crushing. The pain was horrible. I’m not sure what happened and why I felt this way. Perhaps it’s because this was my fifth treatment within 2 weeks, so treatment started to take a toll on my body.

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While it sounds strange, I was still in a good mood despite my physical difficulties. My mom had the day off, which was nice. A migraine hit me later.. so that was more physically draining but still, it was a decent day.

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I can say that treatment kicked my ass on this day. I planned to battle on for my next treatment, which was the day after! I lost the war on this day, but I will win the battle against treatment for this week! I’m not feeling the greatest right now, which is why I’m not being as descriptive as usual.

Treatment 3 of 3
Albert took me for treatment on this day. It started off well. Really well that day. Things were going smoothly and I was getting through treatment quite quickly.

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My plasma is really clearing up! The antibodies definitely are visibly decreasing from my blood. Well, I’d hope so because this is my SIXTH treatment in TWO weeks. It’s pretty intense.

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With having my port accessed 6 times in two weeks, my port is pretty sore. The needles are HUGE, and leave a scab. However, the injection points never get a chance to heal, so it does kind of hurt. Yes, there is numbing cream, but it doesn’t always work. Being poked on open wounds isn’t the greatest experience. I think you can pretty much see the marks on my port from it being accessed so much. I wonder what it’ll look like when I get my port removed. If I get my port removed. Who knows how long I’ll have it. I think this treatment may be indefinite, because without it, I’m back in my wheelchair. However, I really can’t complain, I love my port. I love this treatment. It isn’t as bad as it sounds. The injection pain only lasts for 2 – 3 seconds, so it really isn’t a big deal.

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Anyways, here’s some technological information about Plasma Exchange. The liquid in the bottles is Albumin. It’s synthetic proteins and other things that are in your plasma, with 5% of human product. The yellow stuff in the bag is my plasma, and the Albumin replaces the volume and proteins lost from removing my plasma. The red stuff in the tube is blood. The grey thing that it’s wrapped around is a heater, so that the blood returned to me is the same temperature as my body. With this, I don’t feel anything in terms of feeling the blood being removed and returned back into my body. If I did this twenty years ago, I’d be freezing and wrapped in a blanket because there was nothing around back them to warm the blood up before it’s returned to me. Technology is amazing.

Okay, maybe not so amazing. At the end of treatment, the machine wouldn’t return all of my blood back to me. In the last 15 minutes of treatment, I felt completely sick. I had to get my computer taken away from me and laid down all the way back. I was unbelievably nauseated. I typically don’t throw up… but I ended up throwing up. A lot. I kept asking for a bin, but since I normally don’t vomit, I don’t think the nurses took me seriously. Luckily, they kind of got a bin to me in time, though I kind of threw up all over my hand in my attempt to not throw up all over the pillows and blankets. The nurses kicked my boyfriend out of the room because they were rushing around beside me and I don’t think they wanted him to see me in this condition. However, Albert’s seen me puke many times, I know, how attractive. I kept puking. And puking. And puking. There wasn’t anything left inside of me to puke, but I just kept on puking. We have no idea why I was puking at the END of the treatment when we were pretty much done…

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After vomiting, I felt okay, temporarily. Since we were in downtown Toronto, I really wanted to go to a gluten free bakery nearby. There aren’t too many gourmet cupcake options in my area and I’ve been getting jealous of seeing people with their delicious cupcakes so easily. I chose to go to Almond Butterfly.

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Okay, by the time I got the chance and energy to take a photo of the cupcakes I got, which was one day later, I had already eaten half. It was delicious. I highly recommend this place if you’re looking for gluten free cupcakes, and they even have vegan options too!

After the quick bakery run, the momentary burst of energy ended suddenly. I just started to feel so bad.. moving and talking wasn’t working. It was an early morning Plasma Exchange appointment, so my boyfriend and I hadn’t eaten yet. My boyfriend stopped at Burrito Boyz and it turned out that they had gluten free options right on their menu!

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I’ve been craving Mexican food for months but have been unable to find a place with gluten free options.. until now. They are so good with dealing with Celiacs and cross contamination. They label your food, change their gloves and clean all surfaces when dealing with gluten free orders. It was amazing. I ordered some food and enjoyed it later on that day when I could eat again.

I was exhausted and in pain, but I can definitely say that I won the battle of Plasma Exchange for the week. Treatment 1 – Samanta 2! A war was lost, but a battle was won.

I am now reducing to treatment twice per week now, and so we shall see how things go. I can walk, and I can eat more. Things are getting better.

 

 

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