Plasma Exchange Is Giving Me My Life Back – AGAIN!
Hi world, Sam here.
I know that I’ve been gone for a long time. But I am back!
Let’s recap where we last left off.
My immune system is destroying my autonomic nervous system. What does this mean? Well your autonomic nervous system is what controls unconscious processes, such as breathing, heart rate, body temperature, digestion, blood pressure and more. The messages that my brain sends out to my body aren’t getting thru. This means that my pulse is sky high, my blood pressure drops dangerously low, I have trouble breathing, digesting and so much more. I don’t have a clear diagnosis, but the closest thing is Autoimmune Autonomic Ganglionopathy/Neuropathy. I don’t have the serum antibodies but my response to treatment proves that there is some sort of antibody there attacking me. Antibodies are destroying my nerves and intercepting the messages thatmy brain is sending out to my body. I have been diagnosed with POTS, Gastroparesis, Orthostatic Hypotension and much more. Essentially I am okay, if I don’t eat or move, haha! Without treatment, I am in a wheelchair.
I am undergoing Plasma Exchange to control my diseases. This treatment is very similar to hemodialysis, except my plasma containing the antibodies that are destroying me is what is removed from my blood. You can read more about it, here.
So… my last blog post was back in August, you can read it here. To recap, I have been undergoing Plasma Exchange since January, 2015. By about June, I was somewhat in remission. I was out of my wheelchair and able to walk again! I still had many problems, but I could walk and eat! My independence was back.
Unfortunately, Plasma Exchange is severely underfunded. In August, there was a surge in the amount of people who needed this treatment. However, there are only a limited amount of nurses, so my treatments were cancelled so emergency patients could get treatment. It’s bittersweet, I want treatment so I can get better, but I don’t want anyone to die if they don’t get my appointment spot. I lost my ability to walk again because my blood pressure and pulse were so out of control I was unable to breathe when I stood up.
After 18 days of no treatment in August, I completely relapsed. I was in worst condition than when I even began treatment. It was worst condition that I have EVER been in. I was back in my wheelchair, back sleeping in my living room because I couldn’t walk up the stairs in my living room.
Things were bad. Really bad. It severely impaired my ability to be a student and above all, it made me feel like I lost myself. I haven’t felt like myself in a long time.
Relapsing is difficult. I finally got a taste of what it’s like to be ‘normal’ and independent again, yet it slipped between my fingers and I couldn’t do anything about it. I lost my ability to take care of myself, I wasn’t able to do anything for myself. Adjusting between relapse and remission is the hardest thing that I’ve ever had to do.
In mid September, I began doing treatment THREE times per week, to try to get me back into remission. I honestly thought that I would get better in no time, in maybe a month at the most. I was wrong. Doing treatment three times per week just burnt me out. As soon as I would recover from treatment side effects, I’d just have more treatment. Plasma Exchange became my entire life. It’s like I wasn’t me anymore.
It was only until the past two weeks that I have felt like things are getting better. I am not in remission, but I finally feel like I am truly improving. It took FOUR MONTHS of treatment three times a week for that to happen.
I finally feel like myself again. I don’t just feel like this entity of disease and sadness. I can walk up the stairs sometimes, I sleep in my room more and I am just doing a lot better. I have finally begun leaving my house to go to places that are NOT the hospital! It’s exciting to feel alive again.
I am still undergoing Plasma Exchange three times per week, and there have been cancellations because of the holidays, but I think, at least I hope that I will be okay. Even though I am still doing aggressive treatments, I am now able to have fun and go out on the weekends!
This post is essentially me trying to say that I AM BACK! I am so sorry that I have been absent and unable to reply to your messages, but I am trying as hard as I can to get back to all of you now! I am happy to answer any questions or concerns you have. Some things happened in the past few months, including my sepsis hospitalization and being approved for medical marijuana, however I will touch on those in separate blog posts!
Hello world, Sam is back.