TBM Update #3

Hello all. I am four days removed from the stint trial. To be honest it's been a rough four days. I guess I incorrectly assumed this would be a relatively easy procedure that I would bounce back from lickety split. Haha - jokes on me! But I guess compared to what I'm looking at with the big remodel it easy. I was sent home with oxygen tanks that I was supposed to be on until today, but they were only one hour each. Hmmm, not sure how that was supposed to work. My oxygen levels are not stable at all. I desaturate just walking across the room. While I'm home I've been attached to my concentrator. That helps, so that will be my new routine until things stabilize in the ol' lung area. Sore throat, sore throat, sore throat! Did I say sore throat? Since Thursday when they put the stint in my throat has been extremely raw and soar. It is getting better, so hopefully in a couple of days it will not be soar at all. I really thought I'd be able to go back to work on Monday. Nope, did not happen! Did not happen today either. I am coughing, coughing, coughing and coughing some more. The last several nights I've woken myself up at least 5 or 6 times during the night folded over in a coughing fit. The day time is not much better. I feel as though I have needles in the very back of my throat and any time I swallow, talk, or breath in deeply they grow tentacles and scrape down the backside of my trachea, causing a coughing fit. This in turn leaves me light headed and gasping for air because as I cough my airways collapse nearly all the way - Dr. Meguid drew us a nice picture on the white board in my room of what this looked like! Fun stuff for sure! Sunday morning I was feeling better so I thought I'd run a couple of small errands. I had taken all of my medications - except for the liquid oxycodone they sent me home with - and was ready for the day. I ran to Sam's and then on to AT&T to check on getting a cell phone booster for my house. That was one stop too many. I could barely talk and as I started coughing I reassured the really nice kid helping me that I was not contagious and that it would stop in just a minute. It did not. I asked for a drink and he took me to the back room where I got a drink from the fountain. Then I felt it; the deep barking, gut-wrenching cough that leads to expelling the contents of my entire stomach. Fortunately, I made it to the restroom in time and was able to compose myself before going back out to the sales floor. That was not the least bit embarrassing at all! Needless to say, I went straight home and went to bed. I truly wanted to go to work Monday, but the coughing would not stop and I still could not talk very well. My boss is the greatest guy ever! He told me to take all the time I needed to recover and to focus on getting my strength back for the big remodel. This morning was the same message. I am so blessed to have landed at Woodley's. I cannot express how grateful I am to work there, be surrounded by such good people, and to have such a great boss! They have stuck by me though this TBM experience with no real reason to do so as we are just starting our journey together. I could not be more grateful for that. In addition to the sore throat and coughing I am very shaky/week and have no energy. I know this is from the anesthesia. I've always been pretty sensitive to the magic sleep medicine, but having two doses of it in two days has just about done me in! I did manage a small walk up to the Tasty Freeze with my neighbor, her daughter, and our dogs today. Unfortunately, they were already back on "winter/back to school" hours and did not open until 5, so no ice cream for us. The neighbor's daughter, who is 6, thought we should just wait for them - for 4 hours. We did not agree with her, so we came home. That simple little walk completely wore me out. So, now as I sit here writing this update and watching "Sing" (which is really cute btw!) all I really want to do is close my eyes – I’m just too stubborn to give in at the moment! I did speak with the nurse at Dr. Meguid's office today. She said that the coughing was normal and that some people cough more than others after the stint trial. The lungs do not have pain sensors so coughing is their natural reflex when they become irritated. She said it may be a few more days until they quieted down. She offered me some Benzoate, which I already have, saying that was the best they could offer me. I told her I had plenty and that I was taking Delsym too - and cough drops and throat spray. She said to continue to do all of that and know that it will subside in a few days. Fantastic!

As for what it feels like when by airways collapse, it's pretty scary stuff. It feels as though I'm suffocating. Like the air is stuck right at the base of my throat, not moving up or down; just hanging out in a big ball right at the base, not moving at all. With the stint trial I am having a hard time swallowing as well. Prior to the stint trial the doctors kept asking me if swallowing was difficult, but up to this point it wasn't an issue. Oh how one, well two really, simple procedure can change so much. Due to this new development, I'm not eating very much. I'm actually not hungry either, so that's a plus. I know not eating is probably also contributing to my weakness. Foods that are soft and moist are easiest to consume right now. I may try to eat something at some point this evening. Who knows, maybe I'll lose a few pounds. I'd be OK with that! There's also wheezing associated with TBM. Sometimes I sound like a proud rattle snake who is showing off their natural noise makers for all to see and hear. Goodness knows I’m definitely scaring off people with my own noise and I'm not even trying to be scary! Sometimes it feels like something is stuck in the back of my throat and I am constantly trying to clear it, whether by coughing or trying to work whatever it is up. I've woken myself up many times from the strange noises I was making in my sleep as I tried to clear my throat. I'm not a snorer, but I am now a noisy throat clearer! I guess it's a good thing I sleep alone! During the discovery process, Dr. Meguid's PA asked me what seemed like a bunch of random questions. She first asked me if I had experienced vision swings. I had. In fact, I got glasses back in the Spring and have quite often thought I needed to go back because my eyes seemed to have changed. Some days the glasses worked perfectly. Some days I needed them to be stronger. Some days I didn't need them at all. Kinda crazy. She asked if I had temperature swings. I had. One minute I was freezing and the next I was sweating - I am not a sweater on normal just working days. In fact, quite the opposite. I tend to run pretty chilly. Lately that's not the case. I'll just randomly break out in a cold sweat for no reason. And I know what you may be thinking - no, I know for a fact that I'm not in menopause! It's coming for me soon, but not yet! :) She then asked if I had mood swings/depression. Yepper. Feeling like I cannot breathe has certainly put a damper on my activities/hobbies. Not being able to take Lani for walks, or go hiking, or even just buy groceries without becoming winded definitely puts a damper on the ol' mood. So, yeah, I've been a little moody and depressed lately, and didn't really think much of it. She also asked if I had gained weight. Whoa, wait, what? That's what my brain was screaming a

s she asked these random questions. But, yes, I had gained weight. I attributed it to the loads and loads of the prednisone I had been on in the fall and the lack of energy I had been experiencing the last several months. When I gain weight from prednisone it always disappears at some point, so I haven't been too terribly worried about it. But now she seemed to be telling me there may be another reason for it. Holy cow! Lastly, she asked if I had acid reflux. Nailed it! I DO have acid reflux and had recently been put on prescription strength Omenprazole twice a day, which helped tremendously. I've been told I probably had it, since at least after having my gall bladder taken out, even though I didn't have symptoms. Evidently, acid reflux can do all kinds of crazy damage to anything it comes into contact with. Nasty stuff, that acid reflux! I quizzically asked her why she was asking all of these random questions. She replied that these were all things that they were seeing in patients with TBM. I"m not too sure why TBM is impacting all of these different things, but I was able to check them off one-by-one and connecting the dots is a big thing for me. Maybe it has something to do with being in such close proximity to the thyroid, which controls temperature, weight, moods, etc. Kind of curious! It will be interesting to see where this train of thought leads. I have attached some pictures for you. They are not mine, but I do have all of these images. These were just online, so it was easy to upload them. One is a CT showing how the trachea has collapsed. One is from a bronchoscopy and show good airways versus airways with TBM. The last is just a diagram depicting TBM airways. Thank you all for your interest in my health journey and for your support. It means the world to me!

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