Yes, I know it’s currently the middle of January, and it’s been officially winter for almost a month, and I am way past the day I should have been writing this, but you know what? It’s been a long year, and it just started, and last year was just as bad. Mix that with not knowing what to say, and that makes for a little procrastination, therefore: this post.
I always feel like there isn’t much to cover until I start typing it and realize there’s more than I thought. Let’s see what happens this time…
October was mostly uneventful, except that is a total lie. I had a bronchoscopy scheduled for the 12th of the month. Therefore, the week before, I had to go to Hershey for a pre-op visit with an anesthesiologist who could not seem to get over the fact that I look as young as I do. Since we’re in a day and age when we must wear masks, when I took my mask down so she could check my nose and mouth, she exclaimed, “You look even younger without the mask on than with it!”
Tell me something I don’t know. Also, please listen to what I am saying when I say I have a strong cough reflex and broke a rib last time I had this done because although I am skinny, I metabolize things very quickly and still require higher doses of medication for things to work properly. Please give me enough, even if I “shouldn’t need that much.” I do not fit in a box.
I think she got it pretty well, amazingly.
Day of the procedure, of course, I had a different person working as my anesthesiologist. He spoke a little bit to me and left, then came back fifteen minutes later and seemed disappointed no one had done his job of putting an IV in me. He went and got a kit. When he came back, I flipped my arm over so he could get near the inside of my right elbow. (I have this weird thing where I only let them take blood or put IVs in my right side since I am left-handed.) The anesthesiologist flipped my hand over and began looking at the veins on my hand. He moved away to get a tourniquet so I flipped my hand back over hoping he’d get the hint. I don’t like IVs in my hand, either.
He did not get the hint. He came over, flipped it back over, and I didn’t say anything. I felt a prick and then ignored what was going on because it is usually best, and a doctor came in to speak with me.
“Hello, Mrs. Smith. We’ve met before, I believe. Back in 2017 when you were in for an infection.”
I looked at him. I did not recognize him but had a feeling.
“Were you the doctor who had been a pediatric doctor that was studying infectious disease and loved looking through my medical book?”
Small world! Or, small hospital. It was probably the first since there are many doctors in that hospital, but I’ve never seen the same one twice that wasn’t a scheduled appointment. Also, he was no longer in fellowship for infectious disease as he was in 2017 but was there under the overseeing pulmonologist, meaning he had taken up a different fellowship. This man must like to learn to keep moving around like that! He seems to be a great doctor from my few interactions with him, and he was the only fellow I liked on my second trip to the hospital. (That was a bad trip, and I reported complaints against two others. I never do that. That time I did.)
While we were chatting and he was examining me before the procedure, I stopped paying attention to the anesthesiologist. Until, of course, he apologized for blowing my vein.
Cue the panic because I realized my hand was tingling, and that can’t be good. The anesthesiologist had already bandaged up my hand, and that was probably a good thing because there was a decent amount of blood that I could still see. He apologized again, and I informed him they usually go for my arm since I have fantastic veins there.
“Ah. Well. Perhaps I should have asked you about it before.”
Huh. Yeah, maybe.
I guess I know now that the next time an anesthesiologist comes in and is puzzled why someone else hasn’t done his job for him, I should find someone else to do it! My hand was bruised for a month and ached for even longer. I was to the point where I wondered if there was something else wrong with my hand when it finally stopped hurting.
I realized as he began prepping my arm for an IV that the reason my hand was tingling was because he was using a local anesthetic before putting the IV in, which I do not remember ever having done before. It was probably a good thing, though, with everything else going on.
Other than that, and having issues getting enough cortisol after the procedure (We gave you plenty during the procedure. That feeling is just waking up from anesthesia. It’s normal. Well, excuse me for knowing there’s a different feeling between waking up from anesthesia and the ongoing shakiness, tears I can’t control, and the stars I was seeing. But what do I know.)
Finally, they set me free, and my mother drove us home. Test results came in slowly, showing the aspergillus should be under control right now, as is the pneumocystis, but after several weeks we learned from my doctor that there is a different mycobacterium growing than what was growing last year.
Before we get too much into that, in August when I had an appointment with my endocrinologist and mentioned how many migraine days I was having, she decided it was a good time to check up on my pituitary gland again. She wanted to make sure the little tumors were still gone and see if anything obvious in the MRI could explain the migraines. My husband drove me to Hershey one evening for an 8 pm MRI which went as well as expected, and soon we were on our way home. Results from that came back all clear, which was good but also didn’t explain the migraines.
The day before the MRI, I had an appointment with my primary care provider, who I only see when I remember I should probably visit him to update all my files and get a new prescription of my anti-nausea meds. (Fun fact: I had a Nissen fundoplication when I was six for acid reflux; therefore, I cannot throw up.) While I was there, we talked about my migraines, which I don’t think I’ve ever told doctors about before this year, yet I’ve suffered with them for at least ten years. This year has just been worse, and I figured it would be better for me to be on something to help control them than take Advil or Excedrin, or Tylenol and aspirin since caffeine has been making me jumpy lately. My PCP started me on a low dose of Verapamil, a blood pressure medication that helped my mother with her migraines before. It was between that and a low dose of amitriptyline, which works for my sister, but my PCP opted to try the blood pressure medicine first since my heart rate is already high, and the amitriptyline can cause an increase in heart rate. I think there has been a decrease in the number of migraine days lately, so I think it’s working! Now that I’ll have a prescription that I actually use often prescribed by him, I suppose that will keep me going there once a year for a check-up!
At the beginning of November, I saw my ID doctor, and she informed me about the mycobacterium situation. They had just found it, so it would take a couple of weeks for them to test it against different antibiotics to see which worked best to kill it. I am allergic to several antibiotics, so that was also taken into consideration. They scheduled me to come back in a few weeks to learn what path of medication was to be taken, and I left with the understanding that the most likely one they would put me on would be an inhaled medication taken via a nebulizer. Imagine my surprise when six weeks later I find out that yes, that one is still a possibility, but not until after my system has been flooded with IV antibiotics that I would have to give myself a few times a day via a port in my arm. I was not prepared for that, and a meltdown ensued, but I believe since then, I have come to terms with it. Or maybe not, since I have dreaded writing this update. Along with this medication that would be taken intravenously, there is a pill she wanted me to try as well. However, insurance doesn’t like to cover it long term, and anything I am on will likely be long term, so she wanted to discuss it with the doctors who follow me at NIH to see what they think and see if they would be willing to send that pill to me.
I’m over here praying that they come up with a different treatment option than the IV. At this point, it sounds like I won’t be seeing her again until the end of February, so I keep pushing this off without trying. I will say it’s the Lord’s doing because nothing has been my fault with getting the appointment scheduled. I couldn’t get anyone to respond to me for a while, so it got pushed back that far.
There was also a whole issue where my medicine got stuck in the mail, but I wrote a separate post about that and posted it here if you’d like to read about a Christmas Miracle.
So, that’s the basic gist of my health lately. I have been feeling fine and not having any new issues, so I am content to simply embrace it for now and try not to worry about the future but enjoy my mind not being fogged as I fear antibiotics will change that.
Thank you for all your prayers and for keeping up with me! Sending virtual hugs since we can’t hug in person!