Monday, November 7, 2016

More Appointments...My Favorite!

I was looking over my past few posts, and it actually looks like I haven't had any doctor's appointments lately. Well, if you were thinking that, unfortunately, you'd be mistaken =P In case you weren't aware, I spend about an hour (sometimes more) at my allergist's office every other week. This is so I can get my Xolair injections. I usually see my doctor for at least a few minutes, but most of my time is spent with the nurses who give the injections. Even still, this still feels like I see my doctor and nurses WAY too often. Add onto that, actual appointments where I get to sit down and spend time discussing test results, scheduling new tests, discussing concerns, tweaking medications, etc. PLUS going for blood work, doing said testing, and whatever else needs done...sometimes it just feels like I never escape!

Smiles on our way to yet another doctor!
This past Monday was one of those sit-down appointments with my allergist where I was able to talk with my doctor for more than a few minutes. We had a good bit of stuff to chat about, so I had been waiting for this appointment for a couple of weeks. He also decided to do some breathing tests, so I had to do that before my appointment, and it was a Xolair day so on top of that, the nurse was in and out of my appointment giving me my injection. It was a busy morning!

Nothing much is changing on the allergy front right now. We may be adding another mast cell stabilizer to see if that helps as my GI issues have been a bit worse in the past month than they have been since starting the Xolair in February. The only challenge is that it is not readily available in the USA, so it either has to be ordered from Canada or compounded...so I have some work to do to figure this out...most of the other issues we talked about, we need to wait until I hear back from another couple of doctors before we make any final decisions, so stay tuned for that!

We also discussed some of the increased reactivity that I've been having on Xolair days. His current working theory is that when I am sitting in the waiting area with the other patients, I may be getting triggered without knowing it since my sense of smell is pretty much non-existent. Even though he is an allergist, his office is primarily a respiratory office and a number of their patients wear copious amounts of perfume and/or are smokers...basically the setting of a perfect storm for a mast cell patient. Because I pre-treat with benadryl before getting Xolair, that is likely to mask/postpone any potential reaction that then re-appears 4-6 hours later...SO, to try to avoid these possible exposures, he is going to have me skip the waiting area and wait in one of the empty treatment rooms or the shot room to hopefully avoid coming into contact with any potentially triggering fellow patients.

My second appointment for the week was with the Center for Functional Medicine at the Cleveland Clinic that I went to for the first time in August. This has proven to be much more beneficial than I had anticipated when I first started seeing this doctor. As a functional medicine doctor, he is still a board certified legit doctor, however, his focus is on trying to determine the root cause for chronic issues to treat the source instead of just treating symptoms. He takes a more holistic view and is able to take my records from all my various doctors and hopefully come up with an effective plan treating everything as connected rather than as independent issues. He did say I was his first mast cell patient the last time I saw him, but since August he has begun reading Dr. Afrin's book (Never Bet Against Occam)! He says that while he wouldn't call himself a mast cell expert, he is feeling more equipped to help other patients that may come in with a similar presentation to my symptom patterns. Yay for awareness!

So what did we accomplish? After my appointment in August, we had done a TON of blood work and a few things came back abnormal. Since then, I've redone some of the lab tests and they were still abnormal...so we've been waiting for this appointment to go over some of that and make some decisions about what needs treated and what isn't urgent.

The main thing we discussed was my adrenal function. I've been seeing my endocrinologist for almost a year now and have had borderline low adrenal markers pretty much since we started testing. We have been holding off treating because we were hoping that the adrenal function was/is related to my mast cell reactivity and as we got my mast cells more stable, my adrenal issues would resolve. Unfortunately, after the testing in August, a few other markers of adrenal function also came back quite low, not just borderline, but actually problematic low. Paired with some of my increasing symptoms that are likely endocrine related, it appears that we have run out of time for my mast cells to stop impacting my adrenals. Yay...

At least since he is at least mast cell literate now, he understand how tricky it can be to add new medications (or anything really) into my body. Because of that, we decided to compound an unusual formulation of one needed medication in the hopes that it will reduce the risk of triggering my mast cells. I can't say I'm thrilled to be having to add another medication (especially since we're already looking into another mast cell stabilizer from my Monday appointment), but unfortunately that's just life with mast cell disease sometimes...or any chronic illness probably.

SIDE NOTE: If you also need to compound any of your medications, talk to your insurance company. I recently found out that as long as the prescribed medication is covered, the compounded form is also covered. It's a slightly higher co-pay than if I were going to a standard pharmacy, but still don't have to pay 100%. The medication we are compounding for my adrenal insufficiency is $85 for a 1 month supply (which technically would last longer since I'm starting on a lower than normal dose). Since my insurance is covering it, I have a $20 co-pay. I had NO IDEA that compounded medications were ever covered by insurance, so it's definitely worth talking to your insurance if you're in a similar boat.

Back to the appointment. As I mentioned, the focus of my functional medicine doctor is not only to treat urgent issues, but also to see if we can figure out the root cause and address that, so we're not just trying to manage symptoms but actually doing what we can to fix what is actually wrong. He said that based on his experience, there are typically 5 major causes for the onset of odd issues like I am having: genetic mutation, virus/illness, major emotional/physical/mental stress, environment, brain injury. Obviously things don't always fall into one of these 5 categories, but he has found that MOST times, the answer lies somewhere in there. We have been able to rule out 3 of the 5 for me, and are left with a possible genetic mutation and/or brain injury.

Testing for genetic mutations is a difficult process and not done without specialists involved. That is still on the table for future discussion should we need it, but for now, we have been focusing on brain injury being my potential trigger for setting everything in motion. I have had 6 concussions...my first was from a kick to the head from my horse in high school. At the time we didn't even really know it was a concussion, but based on my symptoms, it is probable that this was my first. During my 3 years in college (graduated a year early), I played soccer and swam. I also ended up with 4 more concussions...most were related to soccer, but one was due to my accident prone-ness and an unfortunate meeting of my head and a cinder block wall in my dorm room...The last concussion was only 1-2 years ago and was the result of my head and a wall meeting yet again...this time as a result of me passing out near a door frame. While there could still be some genetic issues involved, we agreed as we were discussing my history that that long-term post-concussion syndrome (which is a form of traumatic brain injury) could very well have been a major trigger for my symptom onset, especially since the timing fits.

There are certain types of brain injuries that cannot be recovered from. However, there are also a lot of new ways to re-train the brain and re-create signaling pathways that may have been damaged. There is something called the HPA axis in the body which is the neuroendocrine connection between the Hypothalamus, Pituitary, and Adrenals. The hypothalamus and pituitary are located in the brain and the adrenals are located just on top of the kidneys. This axis is responsible for a HUGE portion of what are supposed to be automatic functions in the body, such as endocrine function including hormone production and blood sugar control, water conservation, immune responses, digestion, energy storage and utilization, and stress response. Brain injuries, including concussions, can alter pathways in the brain and impact this axis and communication between these 3 neuroendocrine glands.

Based on my symptom patterns and progression, it seems likely that there may be a connection between my concussions, this HPA axis, and my ongoing health issues. My doctor feels that I may be a good candidate for seeing a functional neurologist who specializes in working with varying degrees of post-concussion syndrome and working on re-mapping pathways in the brain that may have been damaged.

Now, don't misunderstand, the purpose of this is not to "cure" me. Regardless of whether my concussions were the underlying trigger for what is going on in my body, there are somethings that we still don't really know how to address. HOWEVER, the hope is that if there are pieces of this crazy puzzle of my symptoms that are connected to post-concussion syndrome and associated issues with my HPA axis, then by working on brain re-training, those issues can be resolved and/or minimized. This will give us a better picture of what is truly mast cell driven and what is background noise. I'll still be living with and managing my mast cell disease (unless a cure is found sometime soon?!?!), but this might be able to make even that a bit easier.

So that's where we are at! I will keep you posted as we pursue this option and as we (continue to) attempt to get my crazy mast cells under control. As always, THANK YOU for all your prayers and support and encouragement. The messages, instagram comments, texts, emails, etc. never fail to make me smile (and sometimes cry) because I am reminded that I am never alone in this. Not only is God always with me, but I have an incredible network of family and friends and fellow mast cell warriors behind me and lifting me up in prayer. I've said it before, but it's always true so I'll say it again...It is so humbling to literally depend on so many prayers to just get through some days. On days that I'm so sick or discouraged that I can't pray anything but "please, God" I know that I am being held in His hands.

Leni snuggles are *almost* as good as your prayers =)
Please be praying as we are making some decisions regarding treatment both with the functional neurologist and day-to-day symptom management. Please pray for some relief from these ongoing GI issues that seem to be wanting to reappear after months of being relatively quiet. Please pray that my life can be a light to the doctors and nurses that I see so frequently, that I can hold onto joy that will point back to God and be a testimony of His faithfulness and love. Please pray for my family as they are walking this road with me, and I'm sure at times feel helpless as they watch me struggling with symptoms and there is nothing they can do. Pray that Nick and I will continue to be able to choose joy and smile every day!

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