It has been just over a week since I got the first round of Xolair injections, so I figured now was a good time for an update.
We expected that I would have some side effects from the injections. That is completely normal and a common issue with antibody/immunotherapy treatments. I knew it was coming, but it still hit me harder than we had anticipated.
Tuesday last week was ROUGH. I felt like I had the flu...body aches, fever, nausea, bad vomiting, shakes, headache/migraine, swelling, etc. It was all my normal symptoms amplified, plus flu-like symptoms for fun! Yeah, not so much. Wednesday was a bit better, and Thursday was slightly better than Wednesday.
Then I woke up on Friday.
And I. felt. good.
Not just the, well-I-still-have-a-bunch-of-symptoms-but-it's-improved-from yesterday-so-I'll-just-say-I-feel-good, but actually truly good. THAT was a weird feeling!
After a mix up at the lab, I had to get more blood work on Friday morning. We were worried because Friday-Saturday was the women's retreat with our church that I had been looking forward to and hoping I could go on for weeks. Blood work typically knocks me down for a day or two, so I was afraid I was going to miss yet another event I wanted to do. Spoiler alert: that didn't happen! I went and had my blood work done. And that's it. I felt okay...I barely know what to do with myself when I'm not having symptoms...
I decided that no symptoms was a good reason to hide in a closet when Nick got home and attack him with a nerf gun (don't worry, I made sure he was armed, too =P). Anyway, I was able to go on the women's retreat, and it was such a GIFT. I forget how precious time with Godly women is when it has been mostly absent from my life for a while. By 11 pm Friday, I was still feeling good (although fading quickly, just normal tired, still no symptoms). Saturday was a bit rougher, only because like everyone on the retreat, I stayed up way too late and was starting to fall asleep by the afternoon sessions. But even despite the headache and exhaustion, I was thankful. What a gift to have been able to go on the retreat and FEEL GOOD!
At that point we were hoping it was an effect of the Xolair and not just a couple day fluke. It's now Wednesday, and while I did have a bit of a hiccup yesterday, overall the past 5 days have been the best I have had in a while. Things aren't perfect. Xolair is not a cure, just (what appears to be) an effective treatment. It helps calm down my mast cells so they are less reactive, but I can still have reactions. Yesterday I had a bit of a flare up in the afternoon/evening, but that is to be expected. Things are not all of a sudden perfect; ups and downs will still be the norm for me. Hopefully, the difference is that with the Xolair, now my ups will be higher and more frequent and the downs will be fewer and less severe.
We don't know how long this will stick around, but it does appear to be the Xolair working, so hopefully it will last until I get another injection next month. If not, we are still thankful for as much time as we get with me feeling better. It is nice to take a break from the discouragement and frustration and rest in a time of hope and peace for a bit. Even if (in the words of Marlin from Finding Nemo) "good feeling's gone" in another couple of days, we are thankful for whatever break we get.
So in case you're one of those "readers" who just skips to the end, here's the cliff notes version: Xolair appears to be working and we are SO THANKFUL!
But wait, there's more!
Unfortunately, the second part of the update is not quite as good, and we still very much need prayers. When I was in the hospital back in January, I had a few episodes of chest pain and had a couple ECGs done amid all my other symptoms. At the time I was told the ECGs were normal...turns out, not so much...
I saw a cardiologist on Monday and discussed the results of my abnormal ECGs. He also did one in his office yesterday for comparison which was still abnormal. Basically I now appear to have Long QT Syndrome. That means that the ventricles of my heart take their sweet time to contract and the atria want to start the next beat before the ventricles have actually contracted. This can result in arrythmias and may be the source of my passing out with no warning (not to be confused with my "normal" passing out that I DO get warning for). I will be wearing a 2-week heart monitor to hopefully give my doctor the information he needs to determine whether this is being caused by a medication issue or something else. Treatment will depend on what the underlying cause is. Please be praying that the 2-week monitor provides exactly what my doctor needs to make a more firm diagnosis. Also, please pray for wisdom and discernment for my doctors right now. Some of the medications that may be involved are ones that I rely on daily/multiple times a day to control my mast cell symptoms. Things may get tricky, and we will desperately need wisdom to make the best choice for my health and treatment.
That being said, we are choosing joy for the moment. Yes, the cardiology appointment was not what we were expecting, but when does life ever turn out how we planned? There is nothing to be gained by worrying about what COULD be. Worry accomplishes nothing for the future, it only steals joy from the present. Until we know more, we are choosing to still live in the hope and rest that has come with the Xolair injections for now.
As always, thank you for joining us on this crazy journey through life. Thank you to everyone who read my Rare Disease Day blog and shared. Thank you to everyone who has offered up a prayer on our behalf. Thank you to everyone who doesn't believe in God but still has come alongside us during this season of life. Thank you for carrying us when the weight of life is too much. And now, THANK YOU for rejoicing with us when we are resting in hope and peace!