I realized that I haven't done a health update in a bit, so here's what's been going on.
Other than 2 back-to-back days of anaphylaxis, a trip to MN to see my specialist, new symptoms that we can't explain,..yep, I'd say it's a pretty typical month so far!
I was supposed to have a follow-up with my endocrinologist last Monday to discuss some of the blood work I've had done recently and where we need to go in managing my blood sugars. Unfortunately, Impromptu Anaphylaxis Episode 1 earlier in the day meant I spent Monday afternoon in the ER instead of at my doctor's...Thankfully, I was still able to touch base with her and we decided just to wait things out for now. My blood work is borderline, meaning I am showing some adrenal insufficiency. The tricky part is that the treatment for adrenal issues is going on steroids that once they are started I'd be on for the rest of my life. Because my mast cell disease throws a wrench in any sort of plan of action, we've decided to give it a couple of months and see how things are going. If I continue to have blood sugar management issues and my blood work keeps coming back with the same results, then we may have to revisit whether we do need to treat the possible adrenal insufficiency. For now, though, we are just going to monitor things. After talking with my specialist in MN, we feel more comfortable with this plan as we agreed that it is most likely due to mast cell issues rather than a separate adrenal problem. That said, if things continue to show more signs of insufficiency, then regardless of whether it is mast cell driven or not, we may have to treat it...but we're not there yet, so the waiting game it shall remain!
I'm also still in a bit of a waiting period with my neurologist. She has referred me to a new neurologist as she is not sure why I am having some of the new symptoms that I have developed or why some of my previous symptoms are not resolving with the current treatment. I had sent in paperwork to be seen by a specific neurologist at the Cleveland Clinic who only sees a very select patient demographic, but he did not feel that my symptoms were consistent with his specialty. It was a bit discouraging to not be seen by who we had hoped would really be able to give us some answers, but we are trusting that God had a reason that I did not need to be seen by him. In the mean time, I am trying to schedule with the doctor my neurologist referred me to. Unfortunately, he is booked through the rest of the year...my neuro is trying to pull some strings to get me in sooner since she knows him, but we'll have to see...latest news is maybe by August...
Impromptu Anaphyalaxis Episode 2 happened less than 24 hours after IAE1. We're still not sure if the two were related or I got exposed to two different triggers that set me off. Anway, after waking up the next Tuesday morning, I felt surprisingly okay after the ER visit on Monday. I spent the morning with some friends and felt fine. I stopped briefly at the store and felt fine. I got home to get some work done and felt fine...until about 2 hours later. Tuesday afternoon was spent trying to stay ahead of my reaction with Benadryl and breathing treatments and hoping to avoid needing to use an epi pen or return to the ER. Unfortunately, we decided that things were continuing to progress around 7 pm and headed in to our favorite local establishment. I hoped that we'd make it before I needed my epi pen and could let the doctors and nurses take over, but that ended up not being the case...about 10 minutes out from the ER, I could feel the tingling in my mouth and throat start to swell and swallowing become a problem. Cue the epi pen.
Thankfully, the epi pen has not yet failed me and works quickly. Unfortunately, some of the side effects of injecting myself with adrenaline include severe tremors which lead to major muscle cramping. Anyway, we were able to calm things down, but after 3 hours or so, I started to have some symptoms begin to reappear, and it took another round of medications to get things under control. Nick and I finally headed home about 2 am. Just enough time for a great night sleep before Nick had to leave for work at 7 am. #unsungherostatus
So far, it appears that anaphylaxis is keeping its distance for the most part since these two reactions, and hopefully that will continue.
My mom and I just got back from Minnesota for my 6 month follow-up with my mast cell specialist (yay for mother-daughter road trip!). I actually met with his PA (Physician's Assistant) this time, since he is now booking out about a year...I'll see him again when we go back in December. It was a still a good visit, and we were able to discuss things with her and hopefully have a plan moving forward for the next few months.
We are tweaking some of my current medications to see if changing the timing and dosage will have a positive impact on my symptoms. We are also considering adjusting my Xolair injection schedule to see if we can minimize the harsh side effects while still seeing a benefit. We talked with her about some of my newer symptoms to see if she had any thoughts on those, and were able to get some insight on what is likely directly mast cell related and what may be something resulting from mast cell hyperactivity. I know, those basically sound the same...the reality is, the difference in the two is not much clearer on paper than it is in my (or any mast cell patient's) body.
These appointments are both encouraging and discouraging. They are encouraging because it is so good to be able to talk to these researchers who study this stuff every day. Even though I now have a great network of local doctors, they still aren't familiar with mast cell disease and the havoc it causes on my body like Dr. Afrin and his staff. Being able to spend an hour talking with his PA about specific symptoms and treatment options is an incredible blessing that is not available for all mast cell patients, and I am so thankful to be able to do that.
At the same time, though, these appointments can be a bit discouraging. Mostly because the reality is that there is so much still unknown. There are so few answers in the mast cell research world, and while Dr. Afrin and his colleagues are working tirelessly to find answers, the progress is slow in coming. While we did talk with his PA about a variety of topics, the common thread was that the doctors still just don't really know. What don't they know? Pretty much anything...
They don't know why Xolair works in mast cell patients or even what the physiological mechanisms are...they just know that it does. They don't fully understand how or why mast cells cause the widespread systemic symptoms throughout the body when there are still normal amounts of mast cells...the ones I have are just twitchy. They don't know yet if there is truly a genetic link; they can only comment on the growing number of children being seen that have parents (usually moms) with varying forms of mast cell disease.
BUT, despite the fact that right now it can feel discouraging, progress IS being made. Hopefully, one day I'll go to one of these appointments and hear there has been a huge breakthrough in research! Maybe that will be next time, maybe not for another few years...either way, until then, I'll keep on keeping on, manage things as best as possible, and keep smiling every day!
So that's what's been going on recently health-wise. What's coming up next you might ask? Not much. WHAT????
Yep, it's true. After having some pretty harsh side effects from the few medications we have tried recently, we feel (along with my doctors) that my body needs a break. It is hard to tell how I am truly doing on the Xolair injections when there are other medications interacting with my body causing other issues. Right now, my other issues appear to at least be stable, so other than my current medications that we know I tolerate, we are taking a break. No new medications.
Obviously, if something serious comes up in the next few months, we will revisit that decision, but for now, I get a break! To say I am thrilled would put it lightly! I have another probably 2-3 weeks until the most recent medication fail is fully out of my system, so hopefully in that time I will get back to whatever my baseline was. We are still hoping to schedule with a couple of specialists in the coming months, but in the short term, other than my Xolair injections and follow-up with my allergist, NO DOCTORS! Wooo!!!
We're hoping that includes ER and hospital doctors, too =P Stay tuned for an update on Project No New Meds for Kylene! And as always, thank you for your prayers. We are so humbled to know that so many people have been and are faithfully praying for us during this season of life. Thank you for supporting us and being a part of what God is doing in our lives.