The results (so far) from my bronchoscopy and the actions taken because of them:
Before I even left the hospital on the 14th I had been diagnosed with pneumocystis. From research I’ve done, it is another fungal infection. I saw a note somewhere in my medical portal that said it is a “rare” pneumocystis, so look at me being all special and everything. No one can say I’m not rare now.
How we’re treating it:
With a lot of tears.
Just kidding. They started out by prescribing Bactrim, which is an antibiotic. The doctors I’m working with send my medications to me via FedEx and I have to be there to sign for it, so I didn’t get that until the Wednesday after the bronchoscopy (June 19), which ended up being a good thing because I took it at 10:40ish in the morning and went in to the church I work at. About an hour later I noticed my arm was itchy so I looked down at it and realized I had quite the rash on my right arm. Took a look at my left arm…same thing. A red and itchy rash an hour after taking the Bactrim.
Most people would go find some Benadryl and not worry too much about it, but unfortunately for me, I am allergic to Benadryl.
Also unfortunately for me, I had started to shake and not feel up to driving (perks of having adrenal insufficiency) so I couldn’t go home and take chlortabs (which isn’t as helpful as Benadryl but is better than nothing and is how I treated my last skin reaction to a medication.)
Even more unfortunate for me, my mother was away on vacation so I couldn’t call her and have her come help me.
Still more unfortunate for me, I couldn’t get in contact with my doctors.
Fortunately, however, I called my sister, Sarah, who went to the store, bought me some chlortabs, then brought them to the church for me.
As soon as she walked in the door, she noticed my rash (which had developed into hives by that point), and she was concerned. I was going to tell her I was fine, but then I noticed my tongue was feeling funny. As she was about to say, “You need to go to the hospital.” My doctor finally called back and when I told her what was going on, she told me to go to the ER and not to take any more of the Bactrim.
Good plan. (Like I was going to attempt to take it again.)
Sarah drove me to the ER and stayed with me, thankfully. They classified my reaction as anaphylaxis and worked quickly to set me right again after they realized I was wheezing as well as starting to look like a tomato with blight.
Blood work, IV, dose of steroids (which made me feel so much better since I was dragging quite a lot at that point, trying to recover from the bronchoscopy but not doing too well at it), and some epinephrine in my arm (three weeks later and I still have the bruise…but I didn’t feel the shot at all!).
Sarah walked out of the room after the shot to do something quickly and by the time she came back, almost all the redness that had been covering all over (especially my feet, knees, and arms) had all but gone away. I felt 110% better, maybe even more since I got that dose of steroids. I now have an EpiPen since this is not the first allergic reaction I have had to antibiotics, so I have all the shots. Woot. (Please God let me never have to use them…)
Next day, new meds were on their way for me. Mom stayed and signed for them for me since she was home from vacation. (We have decided she can never go on vacation to the Williamsburg area again because last time, Sarah ended up in the hospital. This time, I did. It’s just not allowed anymore.)
I waited until Monday, June 24 to take the new medication and my mom got to come baby sit me since Andrew had a meeting and I didn’t feel like going and sitting at the church when I may or may not have a reaction to the medication. I ended up getting a little dizzy but had no side effects that were too bad until the morning when my stomach was upset. That has seemed to be the norm for this medication. Once a day my stomach is not happy with me, but once it’s done, it’s mostly fine.
Let me tell you about this new medication they put me on.
It’s called Atovaquone and is a liquid, so it’s annoying and kind of gross to begin with. However, it’s not a bottle of liquid, they come in little individually packaged pods and are supposed to be citrus flavored.
I took it for the first time after dinner. I’m to take it with some fats for better absorption, so I made a meal that was full of fats. I braced myself to take it, shook it a little, opened the lid, and my thumbnail got splashed with a yellow liquid that looked like and had the consistency of paint.
My first thought was, “This looks like egg yoke.” Andrew mentioned it looked like mustard. Neither of which are lovely visuals for before attempting to take a liquid medication.
Eventually I took it (after kicking Andrew out of the kitchen) and while it’s still gross looking, I don’t have issues making myself take it anymore.
I haven’t had any of what I would consider “severe” side effects with the medication. Nothing I can’t handle for three weeks, anyway. Last week my doctor emailed to ask how the medication was going so I told her about the upset stomach but that otherwise I was tolerating it fine.
Nothing I can’t handle for three weeks.
Saturday, June 29, I took Mountain Pie (my dog who lives at my parents but sometimes comes to visit me) for a walk around 9am. We returned at 10:05 and I was feeling being out in the heat and humidity (thank you again, SAI) but wasn’t too concerned about it. However, several hours later I was still drained and getting itchy. At first I thought it was my imagination, but as I dressed as Megara from Hercules for a ball with Dancing For Life, I noticed I had a red rash on my chest and back where I was exposed to the sun on our walk earlier. Back to the shadows and shade I go…
I still went to the ball, but only danced one dance and felt pretty miserable for most of it.
Then, Sunday night I spontaneously erupted into tears for no apparent reason and that is how life has been ever since.
Poor Andrew is basically a saint, dealing with my weird mood swings and tears. I yelled at him for the first time ever on Wednesday and I did not mean to, it just came out. I was suddenly very irritated and frustrated with him, and then a few moments later I hugged him, apologized, and burst into tears.
I’ve been struggling with anxiety and random bursts of extreme sadness and frustration with my health when I usually don’t let it bother me. This week has been hard. My emotions are crazy, acting like I’m pregnant when now would be a terrible time to have kids (which makes me even more upset because what if we can never have kids? I’m on these medications indefinitely and they aren’t ones you can take while pregnant). I haven’t been able to sleep much (I’ve been averaging about five hours a night but last night was only three hours). I don’t want to eat but I have been making myself eat because I’ve already lost ten pounds this year, I have no more weight to lose. And I take the medication every twelve hours, which means I have to be somewhere I can take the medication which isn’t always the easiest feat.
So, side effects I can live with for three weeks:
- Upset stomach
- Not sleeping much
- Extreme emotional rollercoaster
- Being a vampire again
- No appetite
- Having to plan my day around when I need to take medication
“I can handle this for the rest of the twenty-one days.” I told myself. Andrew told me. I told my mom.
And then Tuesday I got an email from my doctor saying more Atovaquone is on it’s way. After the twenty-one days, I get to take it once a day indefinitely as a precautionary measure.
I see my Infectious Diseases doctor in Hershey (who has been kept up to date with everything NIH has been doing) two days after my twenty-one days are over, so I’m praying then I can talk to her about the side effects and see where we go from there. Maybe only taking it once a day will make the side effects more bearable.
I try to give things the benefit of the doubt.
Pray for me, y’all.
The main reason I got this bronchoscopy done.
I’ve previously been on antibiotics for this and did not tolerate them well. So far the mycobacterium has not been identified but when it is, my doctors will discuss the best options for treatment.
Yet again, pray for me. And Andrew, my poor boy has his hands full.
Aspergillus Sydowii & Aspergillus Niger
The reason I only have one and a half lungs. For some reason, mold loves my lungs. I, however, do not love it.
How we’re treating it:
I’ve been on Noxafil for this since right after surgery, so over two years now. I had been on a different antifungal prior to my lung collapsing but blood tests showed I wasn’t properly absorbing the medication anymore, it was just giving me side effects so I got switched to Noxafil. I stopped it briefly from April to end of July 2018 but then CTs showed more spots in my lungs so back on the antifungal I went.
And here I stay indefinitely.
To be honest, I have no idea what this one is or if we are doing anything about it. I was put on a ten day round of Augmentin for something, but I am not sure exactly what. I finished that a couple evenings ago and mucus that had been clear for the first time since September is starting to go yellowish again, so I have a feeling something is still going on.
What I’m Doing to Try to Combat Side Effects
- I’d sleep if I could. But I can’t, so I’ve been resting and reading when I can.
- Mountain Pie is staying at the house when I’m home alone for a while to help with stress.
- I’m trying to get back in my habit of taking a bath once a week to detox – so far, so good.
- I’m trying to remember to soak my feet in epsom salts at least four days a week. I haven’t done as well with this, but I’m working on it.
- Drinking green tea to help my body detox (any excuse to drink tea is a good excuse).
- Writing and praying a lot to help battle the emotional side effects.
- I am trying to be very open and honest with Andrew about how I feel and what I’m thinking so he knows how to help or comfort me best. (Have I mentioned he’s a saint?)
Congratulations for making it to the end of this post! Thank you for reading about the plights of my life right now. I’m open to suggestions, prayers, and jokes. We have to keep life light or it’ll weigh us down.