Sunday, December 11, 2016

Finishing the Year...Strong???

It's almost the end of the year, but instead of slowly easing into the holiday season, we're going in Boka-style. Full speed ahead! Basically, from now until the end of the year things are going to be quite busy for me (us) and I wanted to do a quick update and share some prayer requests for the next few weeks.

It's been a bit of a mixed up jumbled mess of mast cells and intestines and Xolair and veins and a horrible game of trying to figure out what is the chicken and what is the egg...basically, there's A LOT going on and we're not sure what is causing what. It's all likely related in some way, but it's hard to pull things apart and figure out what started first and what is the fall out.

Unfortunately, regardless of what came first, we've reached a point where we can no longer do nothing and hope that things turn around on their own...so we've been talking with my doctors to figure out what is the best course of action.

First up has been my Xolair. After 10 months of seeing incredible improvement from these injections, they apparently are no longer working...meaning I've lost pretty much all the progress I made while on the injections...in a matter of weeks....not cool, mast cells, not cool. Right now, we can't tell if the Xolair truly has stopped working or if something is causing the increase in symptoms and masking the improvement I had with the Xolair. Since my reactions to the actual injections do not appear to be significantly worse, we're continuing with my Xolair on the theory that if my recent flare has nothing to do with the Xolair, then stopping it could cause me to spiral downward even faster. I got my most recent injection this past week, and my final injection of 2016 will be the week before Christmas.

Next up is my GI tract. Oh yes, how well we get along...(insert sarcasm and reread that sentence if you missed it the first time through =P) For whatever reason my stomach and intestines have been crying mutiny for the past 6+ weeks. After first it was an annoyance, then it was critical when I had a particularly bad week, now it's something that cannot continue without me really suffering from dehydration, loss of nutrition, and lack of absorption. So we talked with my GI doctor, and we've decided to change out Herman. I've had this feeding tube since April and even though it still works and looks fine, we're going to see if changing it out will alleviate any of my symptoms. My doctor's working theory right now is that the J portion of my tube that extends into my intestines may have become dislodged. I have slightly unusual anatomy which means my tube has to be stitched into my intestinal wall to keep it in place or it will shift positions and flip around so my feeds run into the wrong part of my digestive tract. The x-rays show that my tube still appears to be in place, but if I have pulled the stitches at all (from all my vomiting and intestinal spasms) it could be irritating my intestines and causing this increase in symptoms. We don't know if this will solve these GI issues, but it's a place to start and really the only thing that can be done from a GI perspective. If it doesn't work, that points more toward a mast cell driven issue and we'll have to approach treating this from a different angle. So, all that to say, Herman III will become Herman IV very soon!

Photo from my last tube change in April!
A potentially related issue to my mutinous GI tract is the fact that I have stopped absorbing my medications. Both my pills and liquid medications are no longer working well, if at all. Part of the reason we have spent so much time going on "date nights" lately is because I can't get my reactions under control at home. (If you're new to this blog, date night used in this context does not refer to the socially accepted outing of going to dinner and a movie but a Bokatopia version of a date night which involves an ER trip so I can get meds and Nick can watch baseball or football =P) We can't really do much to address this absorption issue until we know whether this is related to my feeding tube or not. Once we have that information, we'll be better equipped to discuss what we may need to do to address how I can get my medications to work.

Also related to my medications not working, (I told you everything is all intertwined!!) when my at-home meds don't work, we're left chasing a snowballing reaction and often end up needing EpiPens and IV medications to get things under control. In addition to just being more reactive overall, these past few weeks have also brought some of my worst anaphylactic reactions yet...needing 2-3 doses of Epi before we can get things under control...not a fun place to be...

Part of the reason I've been needing more doses of Epi is because we can't get IV access fast enough for me to get the IV medications I need to stop/control the reaction. Epinephrine is life-saving, but it's only a temporary solution. It buys time to get the IV meds that will actually control the internal swelling and symptoms but doesn't necessarily end the reaction right there. For me, I know that once I use an EpiPen, the clock starts...if I'm not able to get IV medications quickly, I may have a rebound reaction and need more Epi to buy us more time. Because I've had so many IVs over the years (many of them within the past year or so), my arms have finally reach a point where the scar tissue and size of my veins is making it very difficult to get access...especially during anaphylaxis or episodes of dehydration when it's already more difficult to find a working vein. The reason I needed multiple doses of Epi during one of my reactions was because 2 EMTs and a doctor in the ambulance couldn't get a line started to get the IV meds I needed going. I had bruises up and down my arms from them trying multiple sites in hopes of finding a cooperative vein. They did finally get a line going and things finally calmed down, but it was a bit tense in the ambulance when my throat was closing and they're frantically giving me Epi to give us more time to find a vein.

Yet another infiltrated IV...
Obviously more than just not being comfortable, it's also getting to the point where it is dangerous for them to not be able to start a line. My arms are shot, and we don't want me to lose the little access I do have left so in an emergent situation there is still a chance to find a working vein. But in the meantime that means we need another option. After a lot of consideration and talking with my doctor, we decided that the best option right now is for me to get a central line. I will be getting a type of central line called a Port-a-Cath (aka port) surgically placed in my chest just below my collarbone with a catheter that will extend through a vein over to my heart. It can be accessed with a needle and provide us with a route to administer medications and fluids without me needing a peripheral IV. This will happen just after my last Xolair injection.

In the middle of all this craziness, Nick and I are headed to see Dr. Afrin! Two days after my tube change Nick and I will be flying (hopefully) to MN for my appointment. We are so thankful for an incredible church family who have helped us find a place to stay for the 2 nights we will be in MN. Two days after we get home from MN, I will be getting my last Xolair injection for 2016 (I CANNOT believe it has been 11 months since I started these injections?!?!). The port placement is scheduled for the day after Xolair, and 4 days after that we will be driving to VA to spend some time with my family.

Can you say whirlwind???

This would all be a lot to deal with even if I wasn't sick...but I am...and right now this is my reality. No, this is not at all where I ever wanted to be. But please don't mistake discouragement for despair. Yes, I'm discouraged that I'm faced with more intensive treatments just to maintain some semblance of control over my mast cell disease...but that DOESN'T mean that I'm allowing this to completely overwhelm my life. I may not have control over my body or mast cells, but I DO have control over my attitude and my perspective.


We are still genuinely smiling. We are still laughing. We are still choosing joy. God is always good and because of THAT, life is still good...even when it's hard.

1 comment:

  1. Kylene, the Lord is amazing through you. He is glorified in your trust in Him, in your choosing joy, in your laughs, smiles, and in your reality of discouragement and struggle. Thank you for sharing. I am praying for you. May He continue to shine through you and be your strength and healing. I send my love.

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