Stuck in the Middle . . .

Welcome back - to you and to me. The last few weeks have been good, challenging, and even frustrating at times. But what's new, huh? :) During the last couple of weeks I started not feeling too swell, but not too bad, just not great. I mentioned to different people, at different times, some of the different things that were bothering me, such as an earache, headache, some stomach issues, shortness of breath, etc. Just little aches and pains, nothing serious. Nothing was bad enough that it was worth calling in reinforcements or alarming anyone over. I just knew I wasn't feeling "right."

A few weeks prior to this latest downturn I had started driving for Uber in order to bring in some extra income as well as to give me something to do with my time. I had started pulmonary rehab, which was quite intense. I also began teaching English online to Chinese students through Landi English, which required a wake up time of somewhere between 2:45 and 3:45 - yep that would be AM! (I do love it though!) As you can see, I've had more than a few things filling my plate lately, so it stood to reason that I would be overly tired. This state of constant fatigue seems to be my now normal.

During this same time frame I had also been diagnosed with severe reflux, which I think I mentioned on Facebook, but probably not here. The notion of me having reflux is something that we'd been knocking around since before my tracheobronchoplasty. In fact, Dr. Hammond said she felt like the reflux would continue to cause issues for me after my procedure. Boy was she ever right, which we will get to later! After waiting for several months to get in to see the GI doctor, I was finally officially diagnosed and we've been moving forward with trying to get it under control ever since.

I had an impedance test, which showed the types of reflux I was having and how many

events I was having throughout the day. Did you know there are two kinds of reflux? There's acid reflux and then the reflux that's literally everything else in the contents of your stomach. Even with being on the maximum amount of acid reflux medicines that I can be given I still had some acid reflux getting through. I had even more of the "all the other stuff" coming through. Impedance monitoring occurs over a 24 hour period. Mine was about 21 hours and showed I had 74 occurrences, which is closing in on nearly 1000 events per month. That's A LOT folks!!!!! To quote Dr. King, my GI doctor, no matter which way you look at it, that's not good.

Additionally, I had a scope to look down into my esophagus, which revealed that the reflux has done some significant damage around the lower sphincter and opening to my stomach. The scope also revealed significant inflammation all the way up my esophagus due to the reflux. With that amount of reflux coming all the way up my esophagus it stood to reason that I have been aspirating as well, meaning that when it comes all the way up and I take deep breaths or cough the reflux gunk is getting down into my airways and even into my lungs, hence the continual respiratory issues I've been having since the big remodel way back in September. It's all one big crazy, nasty cycle and I'm stuck in the middle of it!

I was put on Baclophen three times a day in order to help my sphincter stay closed, or at least closed down part of the time. I took it over five or six weeks and noticed absolutely no difference - nada. In fact, I felt like it was actually getting worse. Or then again, maybe it was just that I was more aware of the reflux? Nonetheless, I was not imagining being awakened four to six times a night with the back of my throat feeling clogged and the disgusting taste of acid burning my mouth. Nope, not imagining that at all!

During this time the not feeling so great that I mentioned earlier, turned in to a full blown sinus and upper respiratory infection. Said infection lasted over three weeks, consisted of another ER visit, urgent care visit, horrific cough and headaches, and lots of time in bed. It also included multiple back and forth phone calls between National Jewish's GI and pulmonology clinics. This is where being stuck in the middle comes into play.

I was extremely short of breath and wheezy at times. I was told by pulmonology that is was most likely caused by my reflux issues. I was told by the GI's office that it was definitely a respiratory issue and to call pulmonology again. For over two weeks this back and forth, being caught in the middle, continued. Finally, the nurse practitioner at the urgent care, who didn't have a choice but to see me, determined I had a seriously bad sinus and upper respiratory infection and gave me some heavy duty antibiotics. She tried to offer more meds to easy the coughing and wheezing, but upon inspection of my medication list she realized I was already on everything she would have prescribed - it's a long respiratory medication list for sure! She told me to take what I needed to calm my airways down.

I finally got an appointment to see Dr. King. I told him that I wasn't any better and then explained how I felt like I was stuck in the middle and had been tossed back and forth between the two clinics during the previous few weeks. Just let me say this before I tell you his response; one of the reasons I love being treated at National Jewish so much is the quality of doctors there. He said he got it and that in a way I was definitely stuck in the middle. He said my reflux was very severe, absolutely caused respiratory episodes and caused me to feel completely horrible. We then discussed our next step forward - surgery to repair the sphincter.

Yepper, I said surgery. So, here we go again . . . maybe, probably. Dr. King ordered three more tests. Two of the tests are required to move forward with the surgery. Two of which I've already had. I will have the third this Friday, which is a special day for me, but I won't get into that here just yet. He went ahead and ordered the tests so that once they were completed he could refer me to the surgeon and slip into a surgical slot as soon as possible.

We covered the three types of surgical procedures that were possible. He could not say which one the surgeon would recommend, but he definitely had one he preferred. I definitely have one I do not prefer. The last one is stuck in the middle. I will go over the procedure more once I've met with the surgeon and know more of what I will be looking at.

Every member of my medical team, and some who are not on my team, all unanimously unequivocally agree that this surgery WILL make me feel better. The nurse who conducted my esophageal manometry actually had the surgery in question. Speaking to her made me feel so much better about the possibility of yet another surgery. As soon as she saw my esophagus and the reflux that came all the way up to the opening of my throat, she said that was definitely my problem and that the surgery would absolutely make me feel better. She revealed that hers looked the same way too and that the surgery made a world of difference to her health. Again, I will go into more detail as to what the tests are when I have met with the surgeon and we are definitely moving forward.

Considering how I was pretty much told the same thing before my big remodel, please

understand if I do not hold that same enthusiasm that my medial team seems to have at the moment. I am trepidatiously hopeful. But I will hold off offering up any more enthusiasm than that until I know the procedure has worked its magic. Please forgive me for that and do not consider me as being negative. I'm not. It's just been two very long years and I've been on an incredibly long emotional rollercoaster ride that doesn't seem to have a stopping point. The thought of one more disappointment is just a bit much to endure at the moment.

So there you have it! That's what I've been up to the last couple of months. I will keep you posted on my progress as I move toward meeting with the surgeon and figuring out what the best course of action would be. As always thank you for joining in on my journey back to health. I'm getting there bit by bit. Blessings to you all!