I apologize for not posting in so long, the last week has been a bit of an... adventure? As I have posted previously, my biggest fear with starting the CDI (continuous diphenhydramine/Benadryl infusion) was getting an infection in my port (the needle/IV access on my chest). Last week, I was changing the tubing on my pump, and the last step before reconnecting to the pump is to "flush" the IV with saline, or salt water in a syringe. When you do that, you check for blood return, which is where you pull back on the syringe and see if there is any blood there- generally, you should almost always have blood return. When I checked, nothing came back. I called the home health nurse who had to come at 12 AM to change the needle and dressing. This meant I was off the pump for a little over an hour, which was no fun. I gave myself liquid Benadryl every hour to try to mimic the dosing, but I felt pretty terrible and was scared to move.
After that, started having some pain in my shoulder a little bit above my port, as well as a white spot on my skin. I called the home health nurse back again, but this time because of the spot and the pain she told me I needed to go to the ER to get assessed for an infiltrated (leaking) or infected port. This of course was terrifying, and I HATE the ER, but because I am extremely immunocompromised they got me into a private room quickly, and tried to get me in and out as soon as possible. I didn't have a fever, which was good news, but the lab tests they ran were ambiguous. Most of the signs for infection weren't there, and they said the site looked good, but because a couple of the lab tests were off, they decided to give me antibiotics as a precaution.
For those of you who aren't familiar with Mast Cell patients and antibiotics, antibiotics generally don't go over well. This is further complicated by our immunocompromise from medications or other immunodeficiencies (I have both). I was worried I would react to the antibiotic they were giving me, since it is on the Mast Cell "no no" list, but I had tolerated it before, which is the best indicator of future reactions, so we premeditated me and ran the medication very slowly. It was uncomfortable, but I was able to tolerate it, so they sent me home on oral antibiotics until the culture would come back.
I thought I was in the clear, but I took my first dose of the oral antibiotics while my home health nurse was with me, and immediately had a pretty strong reaction. Luckily, I was able to control it with the pump. I called my doctor and got a prescription for a different antibiotic. I tolerated 2 doses of that one, but on the second dose, had to use my emergency nebulizer, so we had to stop. I was also supposed to do a steroid dose reduction at the same time, so the doctor and I decided that we wanted to prioritize the steroid drop over a hypothetical infection, and discontinued antibiotics. I monitored my temperature closely over the weekend, and thankfully, the culture came back negative this morning. By now, I had been suspecting it would come back negative, but it still was a big relief. Regardless, this whole thing was very scary and I hope it won't happen again, but realistically, I know that it eventually will. The holiday week has complicated things since it took an extra few days for the culture and my primary care and or mast cell specialist have been out. This week, they are both out. I am still trying to navigate finding a new primary care doctor close to my parents and another close to school. The mast cell specialist also tried me on a new medication to try to help ease the steroid taper, but at this point I didn't tolerate it, and they are on vacation. This more aggressive steroid taper will be good in the long run, but for right now, it sucks, and I am having 2-4 bad days a week because my dose is changing once a week.
On top of this, I felt really guilty because I had to call out the home health nurse another time, this time because I was making my protein shake into ice cream and it exploded all over me and my dressing. She ended up coming out 3-4 times last week, so I have been super careful so that she does not have to make any emergency visits again any time soon. The mast cell specialist also tried me on a new medication to try to help ease the steroid taper, but at this point I didn't tolerate it, and they are on vacation.
More fun, there was photographs taken of our house, so all of last week, my family was packing and purging, and getting rid of anything personal for the pictures. I tried to help here and there, but theres not much I am supposed to do physically, although a lot of the time I do it anyways. With the potential infection, I had to be much more careful and not use that arm or lift. The next weekend is going to be hard, because we are not supposed to be in the house most of Friday through Monday. This is difficult for most "normal" people, but for me, it is especially difficult. It takes me at least an hour to get out of the house, and it is riskier for me to not be in the house because of my immune system and lack of access to supplies like my nebulizer or other emergency things. I am going to go stay at my grandparents for two of the nights, but the whole process t is still rather difficult and stressful. If anybody is looking to buy a house, let me know! :P
I'm working on the final unit for my ASL class, and then we have a cumulative review. It certainly has been harder than I had anticipated, and I am not sure how well I can actually sign, but I know that I can at least understand a little bit now. I am still planning on heading back to school in early August for my summer job. In the mean time, I am trying to take things day by day, but that is much easier said than done. Today in particular was kind of rough, but I'm trying to keep on pushing through!
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