Plasma Exchange: 5 Days, 3 Treatments and 1 Poutine

Insomnia, endless Plasma Exchange, bacterial gum infection, chronic pain, blood dripping out of my mouth, casually laying down in Costco, heavy antibiotics and poutine. That about sums up my past week… things are never dull in the life of Samanta. Never. Where shall I begin?

Monday, May 25
My Monday began with my first round of  Plasma Exchange of the week. To learn about what Plasma Exchange is and why I’m doing it, click here. Albert and I trekked to downtown Toronto for treatment. It takes about a little under an hour to get to the hospital, we then spend 3.5 – 4 hours at the hospital and sit in lovely rush hour traffic for another hour or more to get home. Treatment days are long.

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My insomnia persisted.. so of course my conditions are acting up. Treatment took a very long time, I reacted to the Citrate anti-coagulant worse than usual. There was a strong though short bout of nausea. They loaded me up with calcium though, so I made it through treatment without vomiting! I did have the bin nearby though, just incase. It took me a little while to recover post treatment.1432579962071

Anyway, when I went home, I was in pretty good shape a few hours after treatment. My tachycardia is improving! Because of this, I thought it’d be a good idea to go to Costco with my parents to walk around and get exercise. It really wasn’t the greatest idea…

I managed to walk around about half of the store… but I had to take many breaks. A little over the halfway point, I just felt horrible. My pulse was over 150 beats/minute. It was so difficult to drag my feet to walk. I began to get a low blood pressure migraine. I found myself laying on a bench in Costco while my parents were finishing up shopping and waiting to pay.

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I realized that I kind of really pushed it. I know it sounds rough, but honestly, sometimes I can’t even walk 2ft. to my bathroom from my couch at home after treatment. The fact that I managed to walk around half of the giant store really shows that I truly am improving.

When I got home, I rested for an hour or so and then went upstairs to my room to sleep. Yes, I walked UP the stairs! And I could breathe! It was magical.

EVERYONE!

MY RESTING PULSE HAS BEEN UNDER 100 BEATS PER MINUTE LATELY THANKS TO TREATMENT! AND CONSISTENTLY! CAN YOU BELIEVE IT?

I can walk. I can really walk. I can walk for hours now. The immobility was my biggest obstacle, it was my most troublesome symptom and now it’s starting to be under control. I mean I do have some bad days, but they are becoming less and less frequent.

Guys… I am getting better. My neuropathy is improving, I’m having less numbness and nerve pain. My Gastroparesis is truly improving. I am having joint and muscle pain, but I’d like to focus on what is getting better.

I am getting better. I’m really getting better. I am getting better.

Tuesday, May 26
It was my brother’s birthday! He turned 17. Here’s photos of us when we were younger!

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It was a long day. So basically, over the weekend I started to have gland and lymph nodes pain in my neck. I’ve had insomnia for a while, and it gives me terrible dry eyes and dry mouth. My jaw was hurting, my gums were hypersensitive to pain and it was just bleeding a lot. I presumed that it was from the epic dry mouth, but the pain and blood was terrible so I got an emergency appointment to see a dentist.

Funny story about dentists – I saw one in February. I have cavities and am due for cleaning. However, the dentist doesn’t want to treat me and said no other dentist would treat me in a local clinic because of my conditions. They are especially afraid of my tachycardia and think my heart will stop or something. I think it’s an unreasonable and paranoid fear, but I do understand that they need to protect themselves.

I thus have to get dental treatment done at a major hospital instead. It’s been 3 MONTHS and I still haven’t been seen. It’s ridiculous. They know something’s wrong and they know I need treatment but no one will see me. It’s been months, don’t they understand that my cavities are probably just getting worse and worse?

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So, yeah. I went to my local dental clinic as an emergency patient. They were afraid, but they knew my symptoms were abnormal and that I needed help. I had a bacterial gum infection. It was bad. They did major cleaning and treatments to remove it. I bled a lot, blood kept pouring out of my mouth.

It’s frustrating because if I was seen earlier for cleaning and dental work, none of this would have happened. It’s frustrating because I’ve been in pain causing my insomnia, causing the dry mouth that significantly worsened the situation and I haven’t been able to get help to manage this pain. If my pain was under control, and if I could get care on time, it would have saved me from this entire situation.

Moving forward, I have given a heavy dose of antibiotics. It scared me because antibiotics is how I got sick in the first place, as it caused my C. Difficile infection. And if someone took the time to see me and treat me for the C. Difficile infection because things got out of control… I wouldn’t be chronically ill in the first place.

But it happened, and this is my life. It’s okay though. I made it through the ordeal and things are okay!

Wednesday, May 27
It was an early Wednesday morning. I’m sure you can tell how tired I am from this photo. My insomnia continues… I’ve been sleeping for a maximum of 3 hours per night for a few weeks now. I’m just in constant pain. What a life, right?

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It was okay though, because I got to hang out with my mom all day! She took me to treatment today. I have nothing remarkable to mention about treatment, because it went so smoothly. No side effects, no complications, no infinite alarms and no pausing during treatment.

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I wanted to speak to my hematologist about managing my pain, because I really do need sleep, but apparently he was away and going to be for quite some time. I ended up having to get an immediate appointment at my family doctor.

The thing is, I am a very complicated case and intimidate doctors. As it stands, most of them already don’t want to prescribe me anything new, in fear of how I’ll react. But… I am having issues and I do require care. What am I supposed to do if no one will help me? Only my hematologist will help me at this point, and he’s away. Anyway, I saw my family doctor and she’s not too big on prescribing pain killers. I’m sure you see the problem here… I’m in pain, I’m not sleeping, it’s triggering dry mouth that worsened my bacterial gum infection, and all of my symptoms are slowly flaring up more and more. It took a lot of convincing… but I finally managed to talk her into prescribing me. I only got 10 days worth of painkillers because she wants my hematologist to guide my pain management when he’s back, but I’m not complaining.

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That about sums up my day. I relaxed and took it easy for the rest of the day. It was nice. And I was kinda pain free for a while.

Thursday, May 28
Nothing remarkable to report! I did get these though, I love Sons of Anarchy.
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I don’t know what to do with my life since the show ended. It’s my favourite show, behind Lost. Btw, EVERYONE SHOULD WATCH LOST! It’s incredible.

Friday, May 29
My best friend took me to treatment today! My parents couldn’t manage to take time off and Albert had to take his grandparents to their appointments, so if my best friend didn’t take me, I’d have had to cancel my treatment. It’s difficult, because we have to trek downtown and my Plasma Exchange treatment appointments have changed with only 12 hours notice, so it complicates my parents’ ability to take immediate time off. Anyways, meet Chinmayee!
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I’ve known her since I was 9 years old. We went to different high schools, and different universities in different cities. For those 8 years, I’ve only managed to see her 2 – 3 times per year. She’s an engineer and did co-op in different cities, our schedules have often clashed. However, I saw her twice in one month this month! It made me very happy. This Plasma Exchange day was our second day together this month. She didn’t squirm when she saw my port being accessed!

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We managed to catch up during the drive to the hospital and during treatment. It was nice. I’ve really missed her! My treatment went well, nothing to report! These days, treatments have been going very smoothly, it’s wonderful. I managed to eat some white cheddar popcorn on the way to the hospital. It was light and all I could stomach that morning. Wanna know the best part? Plasma Exchange removes the fat from the popcorn I just ate from my blood! It’s like a cheat, I can eat fatty foods and not worry about it if I eat pretreatment! My Plasma is normally a translucent darker yellow, but today it was whiter and creamier because of the fat.

IMAG4613I actually didn’t experience any side effects after treatment, so we went to Poutineville! I managed to walk down the street from where we parked to the restaurant, I didn’t have to be dropped at the entrance! I can walk. I can really walk. I can walk AND I have my best friend here AND I get gluten free poutine! I’ve only had two poutines in my entire life, and today’s will be the third.

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It was magical. I was in heaven. Hello julienne fries, dairy free cheese, philly steak and bacon poutine with guacamole! They are so diet restriction friendly, the service was incredible. This is Poutineville’s Toronto location. I highly recommend it. Anyway, I struggle to eat much due to my Gastroparesis, but damn I had to try to eat the poutine. My Gastroparesis is improving! While I didn’t get very far in managing to eat it, I enjoyed what I could stomach! I made it into quite a few meals over the weekend.

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It was nice, normally when Chinmayee and I hang out, it’s at my house or her house. I don’t normally feel well so we sit around and talk. It was really nice to be out and about. I really feel like Plasma Exchange is changing my life. It’s incredible.

I am thankful that I have parents who will do everything they can to take me to treatment and to take care of me. They drop everything at a moment’s notice to help me in anyway they can.

I am thankful that I have people in my life, who aren’t related to me, who will take me to treatment and spend a draining day at the hospital with me. They have absolutely no obligation to help me, and yet they are want to make sure I’m okay. I must be pretty damn awesome to have people in my life who will do anything for me, even though they really don’t have to. They’re quite awesome themselves for doing all of this for me.

I am happy. I am thankful. I am getting better. I am able to walk. I am getting my life back.

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