Hmmm… I am not sure where to begin? I am having some memory loss today. Monday I prepared myself for my reveal monitor procedure, getting the things I could get done at work early finished, and trying to clean up my house a bit. I ended up screwing myself over by crashing around 5:00, and taking a long nap. I had to be up really early in the morning. Well, I guess I should say early for me. 5:15. Our trip to the hospital was over an hour a way, and we weren’t sure how to get there, and we wanted to arrive a little early for paperwork that I would have to fill out, and of course if they asked for my medication list once again. I was a zombie, between my nighttime klonopins not wearing off yet, walking around the hospital, and the dreaded elevators.
Honestly, it was a really easy procedure. Easier than getting my powerline put in. The staff was really nice, and were actually really interested in Lyme disease and asked a lot of questions about my illness. I didn’t end up getting anesthesia, instead I ended up going with nova cane injections in my chest. I could feel and hear the surgeon slice open the left side of my chest, kind of near above where my left boob would be if I had boobs LOL, felt the twist of him sliding the device in, and that was that! He wanted to put a few stitches in but said there wasn’t enough meat there to really do that, so he opted for glue.
I was given a small handheld device that looks like a small remote that I can press over my monitor when I have an episode, so they can look at that the specifically, and was given what looks like an internet modem to plug in next to my bed, which every night will link with my monitor and send them my information for the day.
At least Dave could listen to directions better than I can (I believe it is an absolute MUST to have someone with you for your appointments as Lyme brain can make you distort information, forget things, etc), as I thought they told me I couldn’t shower for 5 days. Nope. I have to change the bandages for 5 days. Dave gave me a “please don’t do this to me again” face. Hahaha.
I ended up not showering for several days anyways, today being my first in 3 days, facing away from the water. My tegaderm to cover the bandaging is starting to look a little “angry”, so I am trying to move it around so my skin isn’t as irritated. Once I am all done with the bandages, I will just have steri-strips, that will come off on their own.
Going back and forth here (sorry I am a scatterbrain today! I am sure most of you understand), I did in fact ask about the tilt-table test. The hospital that I had my linq monitor placed at actually has one of the top 5 cardiology departments in the country, and the cardiologist told me that they no longer do the test because they believe it is flawed.
They said it can be great for those who come up with positive results on the test, but he told me that nearly 50% of those with POTS or other blood pressure issues can come up with negative results even though they indeed have a condition. He was willing to find a place that will do the test, but really just recommended me to take the clinical diagnosis, and agreed that I should start taking midodrine, one of the treatments for this condition. Okie dokie. I feel like I got some insight.
The first evening that I had my procedure, I slept for nearly 5 hours. Once the novacane wore off, I was definitely sore, since the placement is in an awkward spot, that movement with your arms and of course laying on your stomach (I am generally a tummy sleeper) is painful. I was a little worried, as my incision started to bleed, and I could see a small pool of blood forming in my dressing. I had a headache, and checked my temperature and it was just over 100. Rut roh. I took some aspirin and went back to bed. No matter what it seems like I have issues here and there with procedures. That is why I hate having them done.
When I woke up in the morning, although I was sore, my temperature was back to normal, and when I changed my dressing everything looked fine. Phew. I decided since everything was alright, I would start my third part of my treatment, a round of Coartem.
My first day I think I handled it really well. Today, not so much. I am sore and fluish. My mind has been kind of wandering off, and I am I guess you can say fuzzy. Putting things in perspective though, I am doing SO MUCH better on Coartem than when I first began. I really believe my Babesia load is coming down, which is a great.
I got my blood work back from the beginning of this week, and one of my send-out tests, haptoglobin, was high. It was ordered because of my liver and spleen being enlarged, so my LLMD is on the path of trying to figure this issue out. Doing a bit of research, the test is done to see how fast your red blood cells are destroyed. It links directly with your liver (where it is produced??). Maybe I will get a phone call from my LLMD about this, but in the meantime I think I will do a bit more research.
I guess that is my little update on how things are going. Wishing you all a good rest of the week and a good weekend!