Plasma Exchange Update: A Journey of Endless Vomiting and Blood Loss
Hey everyone! I know it’s been a while since I’ve written an update. I’ve been having an endless migraine for the last few weeks and it’s been really difficult to articulate what I want to say. I’ve been seriously absent from social media lately and just technology in general lately as well. I’m really struggling with light sensitivity, even with my computer at it’s dimmest brightness with dark sunglasses on. Things have been tough. But I’m okay. Don’t worry.
I guess you can tell that I’m still struggling with mental clarity because my sentence structures kinda really suck and I’m not sure how much sense I’m making right now. Just bear with me, please!
I wrote the quote in the image above to basically explain what my life has been like lately. I have shared it on Instagram as well, my account is @pillsandpebbles incase you wanted to check it out.
Anyways.. where do I begin?
Here’s the good news! I wanted to say that thanks to Plasma Exchange, my resting pulse is now in the 80s! THE EIGHTIES! EIGHTIES! It’s absolutely INCREDIBLE. Plasma Exchange took a long time to really work… but it’s actually working. I haven’t had a pulse this low in YEARS.
Let’s talk about my general health first, before I get to how Plasma Exchange has been. Or maybe I’ll talk about them both together. We’ll see where my writing goes. Okay, you can clearly see my thoughts are all over the place. I’m sure you all have experienced brain fog, so I hope you understand what I’m going through. I apologize.
Not to brag, but I’m actually extremely brilliant. But brain fog… it just makes me feel like an idiot. I feel stupid. I’m struggling to read, comprehend and articulate. It’s frustrating, because I know that I am smart, but my brain is just failing me. I get confused, I misremember and interpret things the wrong way just because I can’t think straight. It’s one thing to have my body physically fail me, but it’s another to just have my mental capabilities malfunction.
I’m happy that I have amazing friends and family there for me though. I’ve missed a lot of my friend’s dinners and events because I’ve been sick, but it is nice when I do get to go out.
I’ve been having bouts of depression, and severe mood swings as well. I think it’s because I am reducing my dose of Amitriptyline, that I use for pain, nausea and sleep, to see if it will improve my blood pressure. However, I am having other symptoms that pre-date my withdrawal – my blood count has been falling, I’ve have worsened nausea, I’ve been vomiting and I’ve had an endless migraine since the end of May. I definitely think the Amitriptyline isn’t the cause of these issues, minus the mood variability, but it definitely doesn’t help the situation with my other symptoms.
I’ve also been experiencing blood loss. This began happening AFTER my blood count began falling, even though I don’t know why it even began falling in the first place.What I mean is, my blood work for the past few weeks shows my hemoglobin is continually falling. I did my last set of blood work as of last week. However as of this weekend, I am passing massive amounts of blood with my stools. It’s like a heavy period. Gross, right?
Anyway, I am increasing my Amitriptyline dosage again right now, so it’s helping with my mood swings and depression. I know I’m not depressed in terms of me coping with my life, as I’m in a pretty good and happy place, so I do think this is a medication/brain chemistry issue rather than my own emotional well being. I tend to ramble about my emotions on Twitter, as @pillsandpebbles, though not as much as usual lately because of my migraines. Um, I’m not sure if you want to check out my Twitter though, I sound like a left winged socialist and I have A LOT of opinions beyond me writing about being sick. I’m pretty blunt about how I feel when I’m not feeling well, and I’m especially dramatic about it when I have migraines.
Oh yeah, so migraines. Let’s talk migraines.
I haven’t been sleeping much lately because of these painful migraines. If you follow me on SnapChat, as smanta02, you’ll see many stories like the photo about about how I can’t handle my migraines. Okay, it’s actually just one migraine though, it just has happened to last for about a month now with various levels of pain. It is eating me up alive. Light hurts. Using my phone and computer is difficult. I’ve been trying to read books now, to occupy myself and distract myself without worsening my migraines. It’s tough to comprehend what I’m reading, but it doesn’t mean that I’m not trying. I am currently reading Lucky Man, by Michael J. Fox. It’s his journey to stardom and how he was diagnosed with Parkinson’s Disease. I love it. He is a great guy.
He has another memoir called Always Looking Up, and I highly recommend reading it. It’s about how Parkinson’s Disease has impacted his life, family and changed his career. He also talks about how he wants to seek treatment, raise money to fund research and work with politicians to allow stem cell research that can maybe lead to a cure. It’s frustrating because we may have the tools to cure, or at least treat, so many medical conditions but research is blocked by the American government because of people’s religious beliefs against using stem cells. Don’t get me wrong, I’m all for everyone having the right to believe what they want, but it is problematic when one’s beliefs negatively impacts and oppresses the lives of others.
Wow, I really got off topic. Plasma Exchange. Let’s get back on topic.
I’ve been doing treatment twice a week now. It’s been truly helping. I am able to walk with no issue anymore. Okay, I do have some issues, I can use the stairs a lot more without assistance but I still have limitations and get exhausted. At least I can breathe though. I can walk with ease, but if I’m on my feet for an hour or two, I need a day.. or a few days rather, to recover. It’s been than being completely unable to walk though.
Treatment itself… well I’ve been tolerating it really well. However, the side effects post treatment have really been destroying me. I’ve been vomiting. I either gets sick immediately after treatment, or I have a false sense of security where I feel really wonderful after treatment for an hour or so and then BOOM, the nausea hits me. There’s lots of vomiting. I have severe migraine induced nausea all the time, so when you add treatment induced nausea… it is a DISASTER.
If I don’t vomit at the hospital, then I’ve been vomiting on the side of the road on the way home. One of the days that Albert took me, I almost threw up in the car. He pulled over to the side of the road just in time for me to puke my guts out. When we got home and he made sure okay, he came up to me and hugged me to thank me for not throwing up in his car. Of course he wouldn’t be mad at me if I did, it’s not like I can control it, but obviously it would really suck to have a car covered in vomit that wreaks every time he drives.
He always takes care of me, regardless of how bad and gross things can get.
Moving on, one of the days after treatment, I was feeling fine, so we went to Poutineville. I’ve never had a poutine in my life ever until I went to Montreal in February, but now I’m addicted. This amazing poutine restaurant is near the hospital, so we decided to go. I barely managed to eat any, but it was delicious. It’s the 4t or 5th one that I’ve EVER had. I only managed to eat at tiny bit though.
It wasn’t so delicious when I puked it back up though…. So glamorous, right? I have no idea how I have a boyfriend considering how gross poutine vomit is. At least I got to eat the poutine without gaining weight? Is that the bright side? I mean I’d rather digest it but I’m just trying to make the best of the situation.
So yeah, treatment worsens my migraines. Severely. Standing and walking makes it hurt, so on treatment days I end up sleeping in my living room because I’m just in so much pain.
At this point, I’ve just been wearing sunglasses almost all of the time to try to ease my migraine, even during treatment. I look a bit silly, but what else can I do? I just gotta cope and manage with what’s happening to me.
I’ve been adapting to my vomiting situation as well, as you can see, I now have a bin with me during and after treatment to save me from wrecking someone’s car. All of this being said, I really love Plasma Exchange. Sure, there are side effects, but it’s okay. It could be worse. I’m doing so much better now, minus you know… my thousand other issues, but being able to walk is really big for me.
My resting pulse has been falling into the 80s now. Isn’t that incredible? It’s been a year or more since that’s ever happened. Treatment is really changing my life. I can walk. I can jump. I can help myself. I can be a little more independent now. While it is frustrating that finally my heart issues are getting better, but the rest of my body is failing, I’m trying to focus on the positives.
My action plan is to figure out why my blood count is falling, and why I’m having endless migraines. They both started at the same time, so I’m wondering if they are connected. My vomiting post treatment also began when these issues started as well. I have NO idea what’s going on with me I am trying to seek treatment for my migraines, which in turn will ideally ease my light sensitivity and nausea. I am going to inquire about if I need iron infusions or blood transfusions because something is clearly wrong and we need to figure it out.
All of this is tough on me, but I can manage it. I can survive. I’ve gone through so much, so this is really just another bump in the road for me. I guess there’s almost ALWAYS a bump in the road for me, but it’s life. It’s okay. My tachycardia is getting better and that makes me happy.
I realised that from the outside looking in, my life seems really bad… but I love my life. I have a wonderful life. I know it’s hard to understand with everything that’s going on, but I can’t say that I have a bad and stressful life. Just because I may be in pain a lot, it doesn’t automatically equate my life with misery.
I’d rather focus on what I have and what’s getting better for me, rather than what’s going wrong in my life.