Thursday, March 10, 2016

Xolair, Heart Monitor, GI doctors, Cortisol, Anaphylaxis, Oh My!

It has been just over 2 weeks since my Xolair injections, I've been on the heart monitor almost a week, saw a new GI doctor last week, and I just finished some endocrine testing so I figured now was a good time for an update.

So, up first, Xolair...what's the scoop now 2 weeks later? I am so thrilled to say that it is still going well! Things are not perfect, I do still experience symptoms, especially during the times of day that histamine activity is highest, but it is greatly improved. My "histamine hangovers" are significantly decreased, and it takes more of a trigger to set me off. All good news! Even better news is that Xolair has officially been approved by my insurance company through December 2016! PLUS, since I have already met my deductible and out-out-pocket max for this year (hospital stays are good for something...), all I will have to pay is my regular co-pay. Such an answer to prayer!

The heart monitor was put on last Friday afternoon and has been named Sebastian. That was a huge answer to unanswered prayer as the timing was totally a God-thing. It was originally supposed to go on after work on Tuesday. However, the time of the appointment meant I would have had to leave work early. I figured I might as well call and see if there were any other appointments so it wouldn't impact my work schedule. Long story short, I was told there was nothing, I kept the appointment on Tuesday, then 10 minutes later I got a call saying I could go on Friday. What made the scheduler call back after we had hung up, I have no idea (actually I do, but you know what I mean =P). We are doing this monitor because we discovered my heart rhythm has been a bit abnormal and my doctor is hoping to catch it in the act. However, because I rarely have what we think are cardiac symptoms, we weren't exactly sure if this would give the information we need. In God's perfect timing, though, Friday night at community group, I started experiencing the same chest pain I had in the hospital when the ECGs in question were taken. This is a pain I only get every so often, so to have actually caught it on the heart monitor is nothing short of God. We are very thankful to now be able to identify whether or not this pain is associated with any specific heart abnormalities or just another mast cell symptom. Since then I have had no other cardiac symptoms. I have to wear the monitor until next Friday and then will follow up with my doctor for the results.

Next up: GI doctor update. We have been in the process of trying to get a good network of doctors locally that I can call in an emergency. I absolutely LOVE my GI in Pittsburgh. He has been fantastic in working with me and managing my care. However, we recently decided that it was probably better for both of us (for multiple reasons) if I look for a local GI to manage my care. I had one GI appointment last week and have another coming up in 2 more weeks. Hopefully one of these will pan out and I will have a local GI contact for any issues. Last week's appointment was good. We covered some of our major concerns, made some decisions regarding what testing needs done in the near future, are trying a new medication, and have a plan going forward. At one point, I had the doctor, the head of the department, and the nurse practitioner all in my exam room discussing my case! It was a good appointment, and we'll see how the next GI appointment goes before we actually schedule any procedures.

The last bit of news is the Cortisol Stimulation Test that I had done yesterday morning. I got a call from my endocrinologist last week saying some of my recent blood work had come back abnormal and we needed to do more testing. For this test, they drew baseline blood work, injected me with some synthetic cortisol, then drew more blood work at 30 minutes and 1 hr. Pretty straight foward, but it ended up a bit more eventful than we hoped...I ended up going into anaphylaxis just before the 1 hr blood draw. We thought we had avoided any reactions since I was okay after the initial injection, but in true Kylene fashion, my body threw us a curve ball. Thankfully, Leni alerted to my reaction just before things got really bad, so my nurse was able to page the doctor and emergency meds before things got even worse. Both the doctor and meds had already arrived by the time I was starting to have trouble swallowing and my coughing turned into actual wheezing. The doctor was fantastic and had actually heard of mast cell diseases! She took charge and got all the meds I typically need ordered without me having to say anything. After a round of epi, benadryl, pepcid, a breathing treatment, oxygen, and a couple doses of something else (I forget) to control my tremors, I was doing better. Thankfully we were still able to get the final 1 hr blood work, so at least it wasn't a complete waste! Small blessings =) I won't know the results of this test until my follow-up appointment in a week and a half or my doctor calls.


Long update and most of it is just waiting to hear back from doctors. It has been such a blessing these past 2 weeks to have some break in my symptoms (despite the anaphylaxis yesterday). At this point we are able to say that the Xolair is definitely having a positive impact for me! Hopefully I will continue to improve with every additional injection. It has been so nice to rest in peace and joy for a time rather than discouragement and frustration. At the same time, there is still a lot up in the air with the heart monitor testing and endocrine testing going on. We may have some major decisions to make in the near future regarding medication issues and treatment plan going forward depending on the results of this testing. Please continue to lift us up in prayer, but this time with thankfulness as well as supplication!

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