Hi everybody! I hope you had a fantastic weekend. Time for my usual end of the week update. Thank you for all of the love, support and outreach from last week's post. I certainly felt the love! I was discharged last Tuesday morning, just in time for my Xolair. Things by Sunday night had finally started to calm down, and they were able to switch me back to oral steroids by Monday night. Xolair went well, I had no swelling at all (which is the first in a long time!) I honestly think it was because my steroid dose is SO high, but I will take any improvement I can get.
Since being discharged from the hospital, not much has changed. Unfortunately, I have not been seeing the improvement I was hoping for on the Gleevec. However, I only JUST reached what my standard dosing should be last night. I am still concerned I might be reacting to an ingredient in the Gleevec. I have been more reactive since doubling my dose last night, which is why I have an inkling about the fillers in the Gleevec. I have a message into my doctor to discuss my options and where to go from here. I am not going to lie, I am disappointed and discouraged, but I am trying to remain optimistic until I feel like we have exhausted all options here. In addition, I have an appointment in about ten days at the Dysautonomia Clinic at Stanford, to see if they have any additional suggestions to help control my POTS (Postural Orthostatic Tachycardia Syndrome). However, these symptoms have been under control, unless I am in a mast cell flare.
Regardless, I have had a good few days. I was able to be more up and active yesterday, and spend some time with some lovely family (shoutout to Grandma and Grandpa, Uncle Mel and Liz!). I went to Target, which is my happy place-- I spend way too much there, but there is too much not to love! I was able to bake some Valentine's treats last night, and I finished an Olaf rug hooking this morning. For those of you who don't know who Olaf is, he is a snowman from the Disney movie Frozen- he is my favorite character. Happy go lucky, and always remaining optimistic, something I am working REALLY hard to do.
Since I don't have any major updates at the moment, I figured I would go back for a moment and discuss how this whole MCAS journey started. For those of you who have followed me since the Peanut Puppy Days, this will sound familiar. When I was in my Freshman year of college, I had known since my early adolescence that I had a mild peanut allergy. Positive skin test, negative blood. I would get itchy if I touched peanuts, but I could be around them, and I was never careful about any sort of cross contamination. I would maybe get a headache if they were being shelled next to me, but nothing crazy. Every day, at the exact same time, I had been eating a protein bar with "peanut flour" listed as the last ingredient on the list. I knew it was there, but since it wasn't causing any problems, I asked my doctor after the peanut allergy diagnosis if I could continue eating them. They told me that as long as I wasn't having any issues, I could continue eating them.
Come Winter Break (still Freshman year of college), I got lazy and stopped waking up in time to eat them. I also ran out, as they temporarily stopped production of them. Two weeks into second semester, I was hungry in class, and I had a bar in my backpack. I will never forget that first anaphylactic episode. I was in my Introduction to Western Religious Traditions Class, and my throat started to get really itchy. Before I knew it, I was coughing and couldn't stop. I happened to have my EpiPen on me, but I normally didn't. I had my inhaler and used it, but was too afraid to use my EpiPen. I didn't carry any Benadryl on me at the time.
I asked the teacher if somebody who knew how to use an EpiPen could walk with me to Student Health just in case. In retrospect, I should have done the EpiPen right away, so I was lucky that I made it on the walk to Student Health. By the time I got to Student Health, I was very short of breath and having a lot of difficulty breathing. I knew I needed the Epi, but was afraid to do it. As the nurse set up a nebulizer breathing treatment for me, I handed her the EpiPen. She handed it back to me and told me that I needed to do it.
I was mortified-- I didn't want to shove a giant needle into my leg, especially when I was already feeling scared! She said she would be there in case I lost consciousness to do it, but that I needed to face my fear and be able to do it myself. I was angry at the time, but in retrospect, I am extremely grateful that she made me do it myself. I immediately felt better and was surprised at how little it hurt. I was able to recover at Student Health and go home without the hospital.
Ever since that episode, these episodes have been completely non stop. We assumed it was a peanut allergy for a while, until we realized that there was no possible way that I was being exposed to peanuts every time I was reacting. This led down to the journey of my eventual MCAS diagnosis.
Supposedly, these "trigger" events are common for MCAS patients, where some event, illness, or trauma triggers Mast Cell Activation Symptoms to begin. The current theory is that I was essentially giving myself immunotherapy every day, and stopping that triggered my body to attack peanuts like an allergy, and then eventually progressing into everything else.
Anyways, that is where I got where I am today. And obviously, I am still very much in the thick of trying to get these mast cells to calm down. I am hoping for encouraging news from my doctor this week, and an uneventful week heading into week two of my Xolair window. Have a great week everybody, and I send my love! Happy Valentine's Day too!
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