Tuesday, August 16, 2016

Xolair (Take 2...or 3), Neuro Appointment, and DAD!!!!

I think I mentioned a few weeks ago that we changed my injection schedule so I would get a 1/2 dose of my Xolair every 2 weeks instead of the full dose once a month. The goal with this was to reduce the side effects I would get after every injection, but hopefully still keep the benefit. Initially, it seemed to work well, I was able to recover from the side effects a couple of days sooner than when I received the full dose, plus I still seemed to hang on to the improvements we were seeing.

The problem, though, is that because I get a smaller dose each injection, there is less wiggle room in my 2 week schedule. It takes some careful planning to make sure I am able to get my injections every other week so the benefit doesn't fade while I'm waiting for the next dose. My doctor's office understands and does whatever they can to keep me on schedule, but sometimes even our best planing can't beat my mast cells...

Last Monday, my mast cells won =\


I'm heading to my doctor this morning for the Xolair injection I was supposed to get last Monday...After not feeling well last Sunday, I woke up Monday still not feeling great. I made it to my appointment and was sitting in the waiting area for the nurse to call me back when Leni alerted.

My sugar was fine, so I knew that meant a reaction was coming. I asked for some water so I could take my emergency medications and hope for the best. About 15 minutes later the nurse called me back, and she could tell I wasn't feeling so good. By that point, I was super dizzy, my stomach was cramping, and I was getting hot and flushed.

Because there is a risk of anaphylaxis from the the Xolair injections, my doctor decided that it was too risky to give them with me already reacting. My blood pressure was low, my temperature was high, and I was developing a bit of a barky cough so it was pretty clear that my body was already having some issues. My doctor suggested that I give it a few hours, then come back later that afternoon if things had settled down. The nurses asked if I was okay to leave, and I told them I thought so but I'd be back if things changed.

I left my doctor's office and immediately had to head to the bathroom to throw up since my stomach was cramping even worse. At that point, I wasn't sure if I was able to drive, so I sat down on a bench in the hallway to just rest for a minute and figure out what to do. And then a smoker walked by....

He wasn't even smoking right then, but the smell of smoke was so strong on his clothes...and that was enough of a trigger for my already reactive mast cells. I started having major trouble breathing along with all my other symptoms becoming more pronounced. I went back into my doctor's office and told them I was not okay.

I lay down in one of the exam rooms while they took my blood pressure and checked my heart rate and oxygen. My blood pressure, which had been low less than 30 minutes before, was now over 140/90 and my heart rate was almost double what it had been. Thankfully my O2 sats were holding okay, but my cough was getting worse and I was getting fewer breaks for breathing in between coughing fits. Plus my stomach was still cramping and my dizziness was getting worse, and my wonderful reaction tremors were starting.

They gave me a double breathing treatment and a shot of Benadryl on top of my emergency meds I had taken half an hour before. After I finished the breathing treatment, my doctor asked how I was feeling. I told him things were maybe a bit better even though I still felt my body was running the show. He agreed but said that better was one thing, and good was a whole different story. Since I was still reacting pretty good, my doctor and nurses had other patients to see, and we had done everything we could in the office, my doctor decided to send me to the ER for more treatment. Thankfully his office is just 2 floors above the ER =)

After a few hours in the ER, some IV medications, and another breathing treatment, I was recovered enough to head home. I called the office as I was leaving to see what we could do about my Xolair injection. We decided to try the next day assuming the majority of my symptoms were gone. If not, I would have to wait until the following week.

Spoiler alert: since I'm writing this post today, I did not get the injection last Tuesday...When I got to the office on Tuesday, my blood pressure was still low and my peak flows (measure of how well I'm breathing) were also low. Plus, I had hives where the ECG electrodes and IV had been in the ER the day before. Unfortunately, just not a good choice for me to get the Xolair while my body was still having issues.

So here I am today. I made it through the week, but not without some rough days and not getting out of the house for almost 5 days in a row. Sometimes it is so hard to be so dependent on medications just to be able to function somewhat "normally." One week...7 days...the difference between being able to eat small amounts of safe food and being unable to stay vertical long enough to make it to the bathroom or keep food in my stomach. Don't get me wrong, I am SO SO thankful to be getting the injections and to have Xolair as a treatment option. But that doesn't mean I don't get frustrated when something like this happens and not only do I have to deal with the initial reaction that happened on Monday, but I also deal with the fallout of being a week late for my Xolair...

But I made it! However rough this past week may have been, it's over. Now I just have to pray that my body cooperates so I'm able to get my injection this week. T-3 hours...

Anyway, on to other news. Tomorrow I have an appointment with a new neurologist. I'm nervous, no two ways about it. I always get nervous before seeing new doctors. Whether it's because I've been told way too many times it's all in my head or there's nothing wrong or I'm just tired of spending half my life in hospitals, I don't know. Whatever the reason, I always get a bit anxious leading up to new appointments...especially when we really need some answers out of them.

I'm being referred to this new doctor by my current neurologist, so the fact that my doctor knows me and my weird symptoms hopefully means that the new doctor will be able to read her notes and maybe have some ideas just going in before I've even seen her. I've had some on going coordination issues that aren't resolving like the balance and strength issues have, some new numbness and tingling, vision changes, and odd headache patterns...nothing at all serious, right??

Anyway, we are always praying that I will see the doctors I need to see and the appointments that I don't need won't get scheduled, so since I was able to get in with this doctor within 2 weeks of when they first called...I think that's a God thing. We are continuing to pray that we will get answers that we need and be able to rule things out that we do not need to consider. Stay tuned for an update after the appointment =)

The last thing going on this week is that MY DAD IS COMING TO VISIT!!!!! Can you tell I'm excited?!?! It's been a while since he has been able to come to Ohio (I think maybe since before we moved??) so I'm looking forward to being able to spend some time with him. Thankfully the weather has even cooled down a bit some maybe we'll get to enjoy some of the nice parks in the area, too =)

So that's my week, plus or minus a few cranky mast cells here and there, but what can you do?? In the words of Dory, "Just keep swimming, just keep swimming, just keep swimming swimming swimming!" And that's what we do, almost literally with the way the humidity has been the past week or so...Smile, find something to be thankful for, and praise God for who He is...Every. Day. None of those things are dependent on circumstances, so no matter how rough the day or dark your season of life, God is good. He loves you beyond anything you can imagine and wants you to know that, believe it, and walk in that truth.

Plus smiling is just pretty much amazing. How can you be upset when you're smiling? Try it...you'll start laughing, I promise =P "Smiling's my favorite!" (Name that movie!)


1 comment:

  1. Why would you ever post that picture?

    ReplyDelete