It’s way too hot outside and I’m stuck inside all day every day with a constant fever. Can’t think of a better title.
Well, on July 27 we arrived at Northside for yet another crack-of-dawn early procedure/surgery and I was entertained for 2 hours by nurses in the radiology department. They had to draw labs and run some tests before my procedure to make sure I was legit and safe to be poked and prodded.
While undergoing testing and interviewing for the 400th time in this hospital, I marveled at the observation that the nurse had to hand write every detail about me into a paper chart. In a hospital. In 2015. Knowing the surgery department was on electronic medical records, I was a bit perturbed that these two departments, located exactly across the hall from each other, could literally not compare notes on my case. So I asked the nurse “Are you not on EMR yet?” She sighed and said the whole hospital had not transitioned and it would be a few more years.
And this is why we have medical errors, folks.
I felt very fortunate that the hospital system for which I worked (Children’s Healthcare of Atlanta) had fully transitioned 4 years ago, and I currently do all of my patient documentation electronically.
Around 8 AM, 2 hours after we arrived—the nurse came in and informed me I was borderline NOT legit-blood a little too thin. She said that the interventional radiologist was also trying to get in touch with my surgeon so they were going to put me “on hold.” So they gave us a good scare that this test would not be happening.
You mean to say that I stopped taking all my blood thinning/fever fighting supplements and suffered through fever the last 7 days, plus I fasted and was up all night with a fever and I’m DYING Of thirst—and you’re going to make me sit here and wait until you people decide?
Nothing ever goes exactly according to plan in medicine, Julie.
Meanwhile, the clock ticked on for 4 more hours. Thankfully they let Daniel hang out with me in the pre-op room, but even he didn’t know he was going to be in there from 6 AM until 12 PM. He hadn’t eaten, either. He says he just didn’t get around to it. I think it was him trying to be empathetic. That’s what sweet husbands do, right?
Needless to say, we were both raging in hunger and thirst and we played some pretty deliriously rousing games of 20 questions and Geography Bee. What else would you do when there is no phone signal in the basement of the hospital and you’re confined to a little more than a prison cell (even strapped down to an IV!) for 6 hours?
Finally, the nurse practitioner for the radiologist came in and said “well, turns out you don’t need that invasive scan after all. You just need a routine CT scan with contrast so we can see your lung blood vessels.”
Initial thought: Seriously? I sat here starving and bored for 6 hours for something that doesn’t require fasting? UGH!
Initial thought, part B: I sat here for 6 hours starving for something that doesn’t require fasting OR incisions and anesthesia! YEAH!
I happily hopped out of my prison cell and ignored the nurse tech as she asked if “I was ok to walk.” Listen lady, I have been seated for 6 hours. I hate sitting. Let me move! Had a quick CT scan with contrast. For the record-the contrast is not pleasant and made me feel like my bladder was on fire.
So that was that procedure.
For the remainder of the week, I stayed home from work and rested got a few things done rested more got fewer things done rested a lot. I have no regrets for going on medical leave and I am oh so glad I did. I haven’t been bored or restless (just legitimately fevery!) which further validates the decision to rest. Turns out I was a lot more exhausted than I thought I was, and being off fever fighting stuff will give you a 24/7 fever. NO FUN. It has been a learning experience on how to manage and control something I can’t immediately fix. In place of the “good guy” fever fighting supplements, Tylenol has become my friend—begrudgingly. I can’t take anything else because it thins my blood and I have too many upcoming procedures. Not to mention that I cut it close last week with blood thickness!
The recovering perfectionist in me likes to follow rules and bend them on occasion when the rules don’t make sense. My functional med MD wants me to take the Tylenol sparingly, but she said if the fever is out of control, I need to take it more. So I’m taking it more and whatdya know—the fever is better with it. And by the way-whatever “they” say about Tylenol not bugging your stomach is all a big lie. Ouch. But at least it zaps my fever away. Win some, lose some.
Speaking of functional med (Dr. Grossman) I saw her Tuesday. I was concerned about the constant fever and weight loss. I’ve now lost 12. Freaking. Impossible-to-keep-on Pounds. See Post #7 in this blog series if you’re even contemplating such thoughts of “Oh man, I wish I could lose 12 pounds” or “why don’t you try harder and eat more” or “here, I’ll give you some of the weight I could lose.” That’s all I’m going to say about that.
Anywho-she ran a bunch of labs for rare fungal conditions, because she believes with how slowly Benedict has become symptomatic in conjunction with my other symptoms that he may be a fungus. She also tested me for lupus and some other autoimmune things that may or may not be present and contributing. But what made me feel the best is she legitimately spent a LONG time with me trying to problem solve through it and seemed genuinely concerned that I am not feeling well. Problem is, there’s only so much she can do until we figure out what Benedict is AND when and how he’s coming out. It was comforting to know someone is that passionate about making me better though. I can’t say enough good things about that physician and I’m so happy some of you reading this blog have asked about her AND gone to see her yourselves!
Funny I mention figuring out what Benedict is and when and how he’s coming out…Because Dr. Moore (the surgeon for those who have forgotten) presented VIPs Julie and Benedict (Benedict is lucky I’m portraying him in this light!) to the thoracic oncology conference last week. They all recommended further tests. Really? More tests? Oh good! I hope they involve starving in a prison hospital room for 6 hours! Oh wait, they do? Grrrrreat.
So Friday the 31st I had a V/Q scan. For those without nerdy medical backgrounds, this is like a PET or CT scan (minus radiation) where they see how much of each lung is ventilated (V) and how much is perfused (Q). Don’t ask me why perfusion is abbreviated with “Q” except I think it has something to do with the word “quantitative.”
Oh Pat Nichols, if you’re reading this by some really random chance, please don’t kill me for not remembering that from PT school!
Anywho—in this scan I first had a standard chest x-ray. Then I sat and breathed from a radioactive oxygen tank for a few minutes. Yum. Glowing air! Then they took pictures on this super fancy newfangled machine (fun fact: it is only 1 of 2 in Atlanta) to see how much of that glowing air entered each part of my lung. Then I got an injection of radioactive proteins and took more pictures to see how much of the glowing dye reached each part of my lungs.
The best part of the whole thing was they actually gave me my films. If you’ve had a scan of any type recently, you know that nowadays they may hand you a DVD, but the radiology tech informed me that Dr. Moore can be very particular about having the actual films. So, old school films and I headed home and I immediately ripped them out of the envelope. Mind you, I haven’t actually SEEN any of this stuff throughout this whole process. Well, the chest x-ray does show that Benedict is absolutely taking up an enormous amount of room in my right lung. And it’s in all the places that cause me discomfort. At least I’m not crazy.
Disclaimer for this next part: I am not a radiologist nor a physician, but I am trained in basic radiology reading.
The V/Q scan was SO COOL. There were pictures of my lungs from all angles. Interestingly, the same part of my right lung that Benedict has completely overtaken was noticeably absent on every angle and picture. My rudimentary radiologist knowledge tells me this means my right upper lobe is getting neither air nor blood flow. It’s basically a big area of dead nothing in my body. Probably a great place to breed infection, no?
Anywho, I will get actual, medically-sound results on that later. 🙂
Moving forward, this weekend has been dedicated to resting, organizing and cleaning a little bit on my part and a LOT on my husband’s and parent’s part! Wow! I am so thankful for such wonderful support and help! Daniel organized our new garage, cleaned out an entire bedroom to make us a “yoga/relaxation/zen” room and was even spotted outside washing my car. My parents came down bringing armloads of groceries and cleaning supplies and my dad did even another grocery run for us while my mom went to town cleaning bathrooms, vacuuming, confiscating cobwebs, and changing sheets/making beds.
I usually stay relatively on top of keeping clean around here (with relatively being a strong word) but my illness and lack of energy, in addition to hectic work schedule, has prevented that over the last month or so. It feels great to be in a cleaner home, especially because I am here all the time. When I’m not around often, I don’t notice. But being here almost 24/7 really points out the mess and it can be a little overwhelming when you feel helpless and unable to do something yourself. So—again–HUGE thanks Daniel and Mom/Dad!
Good thing we’re all spic and span (with a long way to go in some rooms), because I have yet another surgery/procedure tomorrow. I keep writing “surgery/procedure” because it’s really somewhere in between the two. They make me fast, I have to have a pre-op appointment, they put me to sleep, and I have to spend time in the recovery room for 4 hours and the rest of the day on the couch. Maybe I’ll call it a “Procedgery.”
Tomorrow is HOPEFULLY the final step in the pre-surgery (that’s the legit Benedict-busting surgery I’m talking about there) journey. I’m having a needle biopsy of BENEDICT! He can no longer hide in his non-oxygenated/non-perfused little attic in my chest. He’s getting found out TOMORROW! They told me I should have the results by Wednesday. I would be lying if I said I wasn’t actually excited about someone sticking an extremely long needle into my chest/lung cavity. I’ve only been wondering for at least 14 years what the heck it could be.
Lung mass reveal party, anyone? We can get balloons that fly out of a box and write one letter on each balloon for what Benedict’s real name is, then we’ll have to put them in order. It’ll be the rage of Instagram! Ok, maybe I’ve been sitting at home on social media just a little too much.
So, it’s time to go enjoy my last 6 hours of eating and drinking and fever fighting until mid-afternoon tomorrow! Hooray for HOPEFULLY the last hurdle before the BIG hurdle! The rest of this week you will likely find me on the couch binge-watching Friends reruns, reading To Kill a Mockingbird so I can get to the new sequel Go Set a Watchman, catching up on the Today Show (the things you miss when you work full time) and planning out menus and food items for post-surgery that will be helpful to have on hand. Stay tuned because I know some of you have been asking and want to help.
By the way-I can’t thank you all enough for your generous offers to help out! And please know you do not have to provide any food! In case you have completely missed it in this blog post and blog series–my diet is a bit crazy. We (Daniel and I) do want to accept help when offered, because we know the focus has to be on getting me well and not trying to do that AND maintain a completely normal life at the same time. So we will make a list of food and also other things (Trashy magazines? paint my nails? help me wash my hair? mow the lawn? fold my laundry?) that may be helpful when I’m really resting and not feeling well. There’s a post about all of that coming soon!
Read on to Chapter 12…this is where it starts to get interesting.