TBM Update

Hello blog readers. Well, this week has not been great, to say the least. Last Wednesday I saw my pulmonologist, Dr. Kendra Hammond at National Jewish, whom I had not seen since being handed over to the capable hands of Dr. Robert Meguid's team in late June/early July. I continue to suffer from a horrible cough, which was the result of that silly sinus infection I acquired the week I was to finally return to work way back in mid-October. Everyone, had told me that getting a cold/infection that dropped into my chest that close to my big remodel was BAD news. The could could linger for weeks on end and be very annoying or even painful. There can be a lot of misunderstanding and even misinformation out there about TBM, but boy were they right about this!

This stubborn cough was steadily getting worse, instead of better, and I had begun to feel pretty run-down - again. Dr. Hammond was pretty concerned about it and thought it may be time for another round of antibiotic. In October I had already gone through two rounds and really just didn't want any more (this goes back to the mold exposure, but we'll get to that story eventually). She told me that if I did not feel better by Friday or Monday to call her and she send one in for me. Throughout the rest of the week and over the weekend I didn't feel any worse, so I didn't call her. I should have. . . . Monday I felt like I had been hit by a truck. I fought through the day and stayed at work all day. By Tuesday, I called for those antibiotics and tried, but just couldn't stick it out at work. One of my colleagues cringed every time I coughed any where he was within ear shot, that's when I definitely knew it was time to go home. For me another very clear indication that an upper respiratory infection had invaded my body is my voice, well my chest was a little rattly too. Any who, I sounded like a 99 year old woman who had chain-smoked for 98 of those 99 years! :)

Wednesday rolled around and I feel even worse. I called Dr. Hammond first thing and after hearing my cough the nurse asked if I should maybe go to the ER. I immediately started crying and said I didn't know. I so badly wanted that part of my life to over and done with and to just feel good again. The nurse said she would speak with Dr. Hammond about it and see what else she could could do for me. She was very empathic and I could feel her concern for me through the phone - we need more healthcare providers like that!

During this time I was also chatting with some wonderful ladies in one of my TBM support groups (Have I told you about them? I will in just a minute!) and mentioned that I had some Ativan that was given to me after a particularly bad ER visit and that was one of the few things that seemed to calm down my cough, but I hated taking it. She said in all caps to TAKE IT because I had to find some relief from this cough so that my trachea and bronchi could relax and continue to heal. I"m glad I listened because it did help - most likely because it knocks me out, but at least I wasn't coughing.

A few hours later my dear friend Patsy brought me some wonton/egg drop soup, made in only one place in town. I opened the door and the first thing she said to me is, "Are you sure you don't need to go somewhere else? Like an ER?" She did not know the nurse had said the same thing. I told Patsy the same thing, "I don't know." Then added, "Maybe. Probably." She immediately told me to get my shoes on and put my soup in the fridge. When we reached the car she asked me where I wanted to go. I chuckled at that, because I do actually have a favorite ER here in town - sad but true. I live three blocks away from a pretty good hospital and haven't had any bad experiences with that ER, but I prefer one that's all the way on the opposite side of the city from where I live. She said there was no question, then, and away we went to my favorite ER. It is pretty pathetic, and laughable, that I've been to enough ERs in the Springs to have a favorite one, but I do. It's my story and I cannot change it.

For those of you in the Spring, I prefer Memorial North on Briargate & Austin Bluffs. It's part of the UC Health group and they have access to all of my medical records, which really helped them this time understand what I was dealing with. Dr. Westfall, the head of the ER unit and whom I've seen a couple of times, is always very nice and takes time to listen to me. The nurses and respiratory therapists have been just as great too. The last time I was there, which was the visit that led to my TBM diagnosis, I was so panicked and in respiratory distress the respiratory therapist sat with me, held my hand for at least half an hour to 45 minutes, and talked in a quiet, reassuring voice to help calm me down. Not many ER workers take the time to do things like that. I truly appreciate it when they do, though.

The ER was bursting at the seams! It took forever to get back to an exam room. I did send Patsy back to work and my "sister from another mister," Maurie and my pseudo niece, Paige, came to be with me. She is definitely my ER assistant and her endless support is such a blessing! The nurses took all of my vitals, chest x-rays, and blood work to help expedite the process, but I still waited several hours for that room. However, since I had taken that Ativan a few hours earlier I had no cares at all and even wasn't coughing too badly at that time. Once I got back into a room all of the medications I had taken at least six hours earlier had worn off and I was having one coughing fit after another - and they HURT! Everything in my respiratory tract is so inflamed that the slightest cough sends pain radiating everywhere; front to back of my lungs, across my upper back and down into my arm, up my airways straight into the base of my head and wraps around my jaw and ends up in the middle of my ears. The nurse practitioner came in and looked me over. She ordered a CT scan and some much needed pain medication, which again helped the cough subside, but also knocks me out. My oxygen levels dropped to 84 & 85, so back on the O2 I went while waiting for the test results.

Dr. Westfall came in a short time late, saying my blood panel and chest X-ray looked OK and they were trying to get in touch with someone at National Jewish, which was a futile effort because they do not have doctors on-call at night. My CT scan came back clear as well - no damage to the trachea, bronchi, and most importantly no damage to the newly placed mesh. Whew! I think that was my biggest concern because my cough was sounding a little bark/seal-like at times. Anyone with TBM knows what a scary sound that is for sure! I had been in communication with Dr. Hammond earlier in the day, who agreed that going to the ER was a good thing, and was told I could not be given a heavy or high dose of steroids because of my recent surgery. You see, steroids could potentially reduce the inflammation so much in my trachea and bronchi that it would loosen the mesh. We so DO NOT want that to happen in any way shape or form for sure!!! Dr. Westfall was more or less at a loss as to what to do, but the fact that he tried so hard and actually dug into my case meant the absolute world to me and reaffirmed I made the right choice for my ER visit.

He then said something that Maurie and I both found pretty interesting; they no longer administer or give prescriptions for any narcotics of any kind in their ER. This is a much needed attempt to help reduce the opioid addiction crisis we have going on in our society. He said they will do what they can to make patients comfortable, but could not actually prescribe any narcotics. Since I wasn't asking for any narcotics it didn't impact me, but I do think that's a positive move to help get a control on such a raging epidemic in our society. Kudos to them.

I got home around 9 o'clock and went straight to bed. I slept really hard and don't think I even moved much other than to reach over and feel for Lani, my Golden companion! She is the most amazing loyal supporter anyone could ask for. Sometimes I think she knows my body better than I do and can actually feel an exasperation coming on. She did wake me up around 7 to be let outside. So far today I have taken my Adair, cough medicine - Vick's new Formula 44, Benzontate pill, the antibiotic and very small dose of steroid Dr. Hammond reluctantly ended up prescribing for me, 5 mg of Oxy, Sudaphed, a mug of Threaflu, and a collection of vitamins. As I've been composing this post I knew my oxygen was low - it's now at 88. Upon completing this post I will do a nebulizer treatment, take a hot bath, and then crank up the ol' oxygen concentrator. One day I WILL not have to use that sucker anymore!

Beyond that Lani and I will relax on the sofa, or maybe venture back to bed. As you can see, she's pretty exhausted from my ER visit last night and more than agreeable to this plan. She totally cracks me up! Nonetheless, if any of you want to volunteer to come walk her, she would definitely be up for that and would cover you with kisses! :)

As always, thank you for taking the time to read my blog and share within my journey. Blessings to all of you. Have a joyous day!