Pulling the Trigger

So, it is official-- I am now on a CDI, or Continuous Dipenhydramine Infusion. Last night, we decided to give oral steroids another try with the increased Gleevec dosage, as I discussed in last night's post. I immediately noticed a difference, but we wanted to hold out on the hope that my body wouldn't notice the switch. Unfortunately, it did (again), and I had an episode at about 5 AM this morning. This one was scary, because in hopes of not having to use injectable epinephrine, we used inhaled epinephrine, IV Benadryl, and another breathing treatment, albuterol. This was a little more than my body was equipped to handle, so I had some chest pain and an excruciating headache. The worst of it resolved itself within about 20 minutes, but it was NOT a pleasant experience.

This is when I officially said that it was time to start the CDI. This constant yo yo of high doses of Benadryl, Epinephrine, and steroids is taking too much of a toll on my body. I can't live in and out of the hospital, and constantly a benadryl zombie. Although you would think that one would be more of a Benadryl zombie on a constant drip, the CDI actually will give me about half of the benadryl I was taking before, allowing me to drive, function, and hopefully dramatically improve my quality of life. To give you an idea of dosing, the target rate we are working up to is somewhere in the neighborhood of 12-15 mg/hour of Benadryl, when at home I was taking around 75 mg every 4 hours, and crashing before the next dose. Now, if I am symptomatic, I will have a button I can press where I can give myself an extra boost if needed, but a much smaller dose, likely 10-20 mg.

It was a rough day. Since my episode at 5 AM, I wasn't really able to go back to sleep. I missed Cody's birthday, the doctor who I had been working with moved rotations, and the doctor who was supposed to take on my case changed their mind. Without the IV steroids I was feeling pretty lethargic and weak. I wasn't really able to tutor, get any work done, or do much art. An art therapist came by, do we colored for a few minutes, but even that wiped me out. I am hoping to get some sleep tonight and have a better day tomorrow.

At about 4:30 today, they moved me back to the ICU to start the drip. I don't actually need to be in the ICU out of medical necessity, but it is hospital protocol since the CDI is so rare. We are very slowly increasing the dose to a therapeutic level, and using additional IV Benadryl in the mean time to bridge that gap. The drip is going to run through my port, which is the implanted IV in my upper chest that was placed in November. Before, it just hung out most of the time, but it will now be accessed (have an IV in it) 24/7. This is the biggest concern with the CDI, because it does our me at risk for an infection. I have to be extraordinarily cautious to not get it wet or dirty in any way, shape or form. I am not going to lie, I am TERRIFIED of sepsis (infection). But, at this point, its again a concern of quality of life. The hope is that once things calm down, we can stop the CDI, and switch back to oral Benadryl only. But first, I want to go back to school in August! Originally, reports had said that nobody has been able to successfully stop the CDI, but there are now reports of people who have been able to stop it successfully. My goal would be to get me back to school, stable, and then work on weaning it off. This is something I will discuss with my mast cell specialist at my appointment in early June.

We are all doing our research since this is new to everybody involved. The pharmacist and doctor here printed out a whole bunch of articles that we are all passing around. Based off of what I am reading, things should really mellow out in the next 24-48 hours as we fine tune the dose. Then, once the steroid is figured out, I can go home! Not sure how long that will take, but I am guessing Wednesday/Thursday. My unsteadiness on my feet has resolved, so now we work to make sure things stay that way, as well as learn home care measures, and they also would like me to gain some weight and increase protein intake to ensure my body has what it needs to maximize the benefits of my medication.

This link is from a blog written by another person with MCAS, EDS and POTS, Cheyanne, who has been on the CDI since September 2015. She does an amazing job explaining the CDI and how it works. I am also happy to share the more scientific articles as well, just let me know and I can send them over email.

Therefore, I am cautiously optimistic about the CDI. I am confident it will help, but I am really scared about infection and logistics. These are things that we will work on sorting out over the next few days as we get prepped to send me home. I'm not normally the type to ask for prayers, but if you can PLEASE cross your fingers and toes for a safe, successful treatment experience, I would appreciate it. I want to go home!