Plasma Exchange Update, April 10, 2015
Another day, another round of Plasma Exchange. If you read my most recent blog post, you already know that I’ve only been getting one round of treatment per week lately, instead of the two I need. While I am not getting any worse, I am not getting any better. My symptoms have basically plateaued and honestly all I want is more treatment so I can have some real improvement. I am not in my wheelchair anymore though, which is still a huge plus. With my plateaued symptoms and the changing weather, I’m exhausted, I’m having more and more migraines, and I’m in in pain. It’s more so muscle pain and body aches rather than neuropathy pain, my neuropathy seems to be under control. My colon has been waking me up every morning lately though, following with a mad dash to the bathroom. My arthritis is also flaring with all of this rain, which is sadly a statement is coming out of my 22 year old mouth, NOT from a 60 year old person. I smell like muscle rub. My boyfriend told me that I smell like his grandma.
Treatment itself is going well, I am not really experiencing side effects anymore. I now strategically take Midodrine right before and during my treatment to prevent my blood pressure from falling from the low blood volume during treatment. Midodrine is a short term vasopressor that constricts my veins to raise my blood pressure and thus lower my tachycardia. It’s made a huge improvement for me, as I don’t feel as exhausted as I normally do during treatment. I’ve actually been working on a Plasma Exchange FAQ section for my blog while doing Plasma Exchange.
Wait! I forgot to mention that my plasma is unusually cloudy. Typically it’s yellow and clear, rather than how opaque it is in the photo below. I haven’t changed my diet, so while cloudy plasma is typically an indicator of fatty lipids in my bloodstream, we’re not sure if that’s the reason my plasma is opaque. My nurse has suggested that this possibly means that my body is creating more antibodies than usual which is definitely an indicator that I need treatment much more frequently. On a side note, isn’t it kind of cool that the liquid in this bag was something that was literally inside of me and circulating in my blood stream right before treatment? Technology is incredible.
Anyway, it’s been two days since this week’s treatment, and I have suddenly developed a rash on and around my port which is kind of strange. I’ve been having abnormal pain on my port since my last treatment, which has continued to today with the new rash. I’m unsure of what it is, but I’m keeping an eye out for new symptoms just incase I somehow develop sepsis. They have never had a case of port related sepsis at the clinic I go to, so I’m sure it’s probably nothing.
Funny story, I looked up the symptoms for sepsis just incase and most of the symptoms listed are symptoms that I already always have. I can never use the internet to diagnose myself because with my range of symptoms it seems like I have EVERY health issue known to man! And based on my lack of diagnoses in some areas, I clearly have health issues beyond what is known to man.
Anyways, I have a lot of my Plasma Exchange FAQ written out and I will be posting what I already have done shortly. These are the questions that I am currently working on. If you have any other questions that you’d like answered, please comment! I want to share as much information as I can so I can be able to help you!
What is Plasma Exchange?
Why Do I Get Plasma Exchange Done?
How Exactly Is Plasma Exchange Done?
How Else Can Plasma Be Done If You Have Inaccessible Veins?
What is a Hickman Line?
How Often Does One Need Treatment?
Will I need to do Plasma Exchange Forever?
What Is a Port? Why Do I Have One?
Are Ports Safe? Can They Move Around In My Chest?
How Long Can I Keep My Port In Me?
How Is My Port Accessed For Plasma Exchange?
Does Plasma Exchange Hurt?
What Are The Side Effects of Plasma Exchange?
What Else Is Plasma Exchange Used For?
What’s The Difference Between Plasma Exchange and IVIg?