The 9th Pneumonia: Shit Just Got Real
06 January 2018
So this is a story about how, ultimately, I spent the 2017-2018 holidays. Here I was on December 4th, 2017, already sick but determined to rally and get better in time for all of the festive and fun Advent activities I had planned for our little familia.
Unfortunately, maybe?, many of those activities were outside in the cold air, and many of them were among a crowd of strangers. I don't know when, exactly, or how, exactly, I got sick, but I sort of documented my decline. Already in the beginning of December, I knew this illness would be significantly different, somehow, than the first eight times I ended up with pneumonia in the past 18 months or so.
Here I was later, with Chloë on December 15th. I had already been to my own primary care doctor, complaining of illness and general malaise. He gave me 4 days (!!) of prednisone and informed me, perhaps for the first time since I've been getting all this pneumonia, that I'm supposed to be using my Advair inhaler twice a day as a maintenance prevention for breathing problems, and the rescue inhaler - hopefully - no more than once per week. By the time I saw them, I was using it two or three times a day.
I had also been to the emergency room the night before this visit, with Chloë and the rest of Team Odette to the Scentsy Commons Point of Light Christmas spectacle. I had not gotten better on the Advair and Prednisone routine, and I could feel myself sinking deeper into the illness. They gave me a few days - maybe a Z-pack? but I forget by now - of antibiotics and sent me home.
By December 21st, I was admitted into the hospital. That was following visit #2 to my primary care doctor, feeling even sicker yet, but nothing was done. Absolutely nothing. He said my lungs sounded like they had "improved," and he sent me home with nothing.
No X-rays had ever been taken for any of these three combined visits, despite my complaints and despite the fact that I had ended up with pneumonia eight times in the previous year and a half or so.
When I was admitted on the 21st, I felt sicker than I had ever been in my entire life. They did the X-rays, and then they did a CT of my lungs. The internal medicine specialist and the pulmonologist with whom he consulted agreed: I had the worst-looking set of lungs they had ever seen in their entire combined careers. I was feeling, I thought, "better" and didn't want to comply with certain parts of my treatment in the hospital after admission, like eating a Dysphasia Level 2 diet that I didn't feel was necessary because it was so extremely restrictive. Every time I tried to order something to eat, I was told it was not on my list. I could basically eat very soupy mashed potatoes, creamy soups, watery oatmeal, and... cottage cheese. I lived on those for a week. At first, I felt like they were serving me pre-chewed, unappetizing food and returned it to the kitchen without eating any, embarking on my own personal hunger strike. Thank goodness I could still get my beloved addiction Diet Coke from the kitchen!
I was stupid.
When my lovely nurse came in to tell me what the doctors had said about my lungs and inform me about how serious my case was, she was in tears. I didn't expect her to be in tears telling me how sick I was, in front of my family. By the time she finished, I was in tears, too. And after that, because I am a mother and I have a job to do on this earth, I agreed to be fully compliant with every step in my healing process.
(Thankfully, the kids were distracted by their tablets and were not paying any attention, which was a relief for me, because I would have wanted to deliver that kind of news myself.)
This was the scene outside my hospital window, when I woke up on Christmas morning. I was excited for the kids, because I knew how badly they wished for snow. Enough snow to play in, build stuff with... and they got it for Christmas! I was delighted. But I knew the conditions on the road were not good, and I was sad at the thought of spending Christmas in the hospital without my family. I cried. My nurses brought me tissues and pudding. I took my solace that lonely Christmas Day in chocolate sugar-free Hunts pudding cups. Granted, I had some pills crushed up in them, but still. It wasn't so bad. Right?
By this time, I had been moved into the lead-room. I had had a shower down on Floor 2 on my second day in the hospital. It wore me out for three full days, and I had a setback. Sometime in there - I was quite delirious for parts of it - the internal medicine doc who had admitted me, came in to tell me about my case. He told me it was very severe, and he seemed both doubtful and agitated when he told me three different times, in three different ways, that I would improve, get better, recover from this. I wasn't sure if he was trying to convince me or himself.
After that, I was moved up to Floor 6. They were consolidating patients onto specific wings and floors, because they had a skeleton crew for the holidays. I was moved from my spacious 2nd floor room into this teensy-tiny lead-filled room on the 6th floor. The purpose of the room was to treat thyroid cancer patients with radioactive uranium. My nurse told me that the nursing staff had extremely limited time with these patients, due to the radioactivity, and basically had enough time to peek in and throw their food trays at the patients. They received their medicine through a double-door window. Often, these patients were from foreign countries and sometimes spoke little or no English. The nurse told me that these poor patients, usually female it seemed, were often trembling with fear and confusion about what was happening to them during their treatment. After they were finally released, the rooms were checked daily with Geiger counters until no more radioactivity was detected, and then other patients and routine nursing care could continue there.
Hearing this, I felt so sad for those patients, and I was more strongly determined that what was going on with me was relatively minor. I believed my doctor now: I would improve. I would get better. I would recover from this. I knew I would.
Eventually, the roads did clear enough, and my family came to see me for a short 90-minute visit on Christmas Day. I was elated! I looked like hell but didn't care: this was definitely a photo op!
By this point, they and the staff were required to wear masks and, in the case of the staffs, full disposable gowns to come in and treat me. I had tested positive for community-acquired MRSA pneumonia. It was in all my mucus membranes and, because I was coughing so severely that I had to take round-the-clock narcotics for the pain that caused, every one coming into contact with me had to "gown up."
By this point, and outside first-class pulmonologist had been called in to consult on my case, and he visited me every day in the hospital after that. (I can't even remember his name, though I am sure it's in my records and in my discharge paperwork.Somewhere. One day during this stay, I was also so delirious that I could not remember my birth date, where I was at the moment, or why I was there. I was giggling and thought this made me so stupid; nurses were called immediately to evaluate me. I was still giggling and insistent that I was in the Naval hospital in Portsmouth, Virginia, having had a tonsillectomy. I was lulu-cray!)
The pulmonologist was determined to crack my case and find out why I got so sick so quickly, and why I've kept getting pneumonia all these times. Several theories were floated: The doctors seemed to believe my then-claim (which was later confirmed by bloodwork), that I had a severe IgA deficiency and make no detectable levels of this first line of defense in the immune system. I was highly interested in this theory because I knew - also recently confirmed by bloodwork - that Chloë inherited this IgA deficiency from me.
The speech therapy team were certain that I had a weakened swallowing mechanism and wanted me to have a swallowing study done. They felt I was aspirating frequently, and that this was leading to some of my bouts of pneumonia. I knew for a fact that, despite the inconvenience of the diet, they were right. On some counts.
I can never remember the third theory. That's probably a bad thing, because I was sure it, too, was playing a role in all these increasingly serious illnesses.
The day after Christmas, Rob sent me this adorable picture of Paco in the new bed we gave him and Tapioca for Christmas. They had also been snuggling up together in it, at first, but eventually Paco showed Alpha Male dominance and claimed it for himself. I could see my husband and kids, but I missed my puppies something awful! I kept trying to get Rob to smuggle at least Paco in to see me. One of my nurses was on my side (hee!), but Rob did not relent.
Two nights before I was released from the hospital, I had this male nurse who spells his name differently but sounds-like Bo, who is the one described above. After I posted this, he also refused to bring me my Advair and albuterol inhaler, or call the respiratory therapist for a nebulizer treatment, when I was having trouble breathing. I have many nursing friends on Facebook who talked me into filing a formal complaint against him. I did. I was shocked when, after that, he returned to "caring" for me! He was full of sad, lame excuses for what happened, how busy he had been, and how my meds were "in his back pocket" but he just didn't get a chance to bring them to me. Needless to say, I filed a second complaint against Bo - including the breathing treatments this time - when I was being released and the charge nurse came in to check on my level of care.
I must say, all of the rest of my treatment was unimpeachable but, bar none, the best care I received was from Rob. I can't complain a bit about how amazingly well he cared - has always cared - for me during this rough time. He's the best. He's an absolute keeper. Chloë asked him if I would be home from the hospital in time for our 17th anniversary on January 2nd. He could only look at her and say, "I don't know."
During this stay, my normally crappy veins were even more uncooperative than usual. The nurses were no match for those rotten blood vessels! They kept calling the phlebotomists to do the 3x-a-day blood draws, but even the phlebs kept feeling awful about having to come in my room. I had bruises on both arms from hands to armpits, plus two more from failed attempts on my right foot. Those veins kept collapsing, rolling, disappearing, and blowing. They were upset I hadn't yet had a PICC line inserted, but on December 27th, the day before my initial release, the Resource team finally came up to put one in.
I was terrified! I knew that the line went straight to my heart and that if I picked up the wrong infection in the PICC, given my history of heart defects at birth and now MRSA-pneumonia, the outcome could be very unfortunate. Yeah. I was scared.
Plus I'm just a weeny, and I was scared about the process. I thought it would be painful and scary. In the end, sheer exhaustion went out, and I fell asleep after the 20-minute procedure began. Heh.
On the 28th after a week in the hospital, I was released to Rob's care. Immediately after I left the hospital, we crossed the street to visit the Infectious Diseases specialists who had now been called in on my case. They taught Rob how to administer my Teflaro (ceftaroline fosamil), the antibiotics I'm getting via infusion in the PICC line, which are keeping me alive and steering me toward better health. They taught Rob how to do the 30-second alcohol cleaning of the port site, the saline flushes before and after the antibiotic is administered, and the heparin lock at the end. I could tell Rob was nervous, but only because he cared so much to get it right.
And he has.
After I came home and had my emotional homecoming with my little family, I got the best gift! Look at all these eggs our six remaining chickens have laid! One of them lays brown eggs, and now we have an olive layer giving us those high-protein green ones! The girls seem to think the olive layer is my white silkie, Athena. Yay! (The flavor of her eggs is going to have to be an acquired taste, I think; I didn't quite like the omelet Rob made for me with them, but I know they'll be great in cookies and cakes, etc.)
Apparently, there is a third layer out there, putting out white eggs, but her first and only egg so far was weak and broke easily before it could be stored. Rob and I went to the feed store yesterday to talk to the chicken experts there about fortifying her diet to help her make stronger eggs. Hopefully that helps.
Unfortunately, on the night after my initial release, on the 29th, I had a seizure on the couch in front of my family. Rob says I was aware of it and asked, "What the hell just happened?" after it ended a minute later, but I don't remember that. He jumped on the phone and called up the nurse line at the hospital to get advice. During the call, I had a second one in my sleep. He hung up the phone then, saying, "Never mind, I'm bringing her to the ER right now."
I don't remember that trip at all.
What I do remember was being absolutely shocked when they told me I had to be readmitted to be observed for these seizures, since my neurologist had already documented my having a history of possible seizure disorder, with absence seizures. I was astounded at this readmission. The last time I remember feeling this shocked in my life was when I was 30 weeks pregnant and the OBs at - wait for it - the Naval hospital in Portsmouth, Virginia, told me that I was in pre-term labor with the twins. I remember begging them to make it stop, couldn't believe this was happening so early, and I felt those same feelings return on this past December 29th. I'd just been released after a week, FPS! Shocked.
The neurologist on duty, Dr. Miller, came to see me and called Rob from my hospital room. He asked Rob to come in right away and stay with me in the hospital during a 24-hour EEG. I had had another seizure in the ER, I just remembered, the tail-end of which Rob was able to catch on his phone's video camera. All the docs were looking at it. That probably forced my admission right there. Thanks, Hon. ;)
Rob set up the kids at home to be safe and independent for the next 24 hours, and then he joined me for a night in the hospital. Twenty-five, I think, electrodes were glued to my head, I was hooked up, and off we went for the next 24 hours. Rob was sleeping when I hit the "I've had an event" button for the first time. Or maybe he had run home. I don't remember. It was an absence episode, I thought. I could feel my temperature climbing higher and higher, and then I was suddenly wondering where I was. I hit the button.
My awesome nurse, Kaitlyn, was there in a split second. Like, so fast I thought she'd been waiting outside the door just for this moment, and several others joined her. I explained what had happened, and I was sorry to bother her, but she reassured me that I had done exactly the right thing.
The next morning, my next nurse, Clarinda, hit the button after another absence, a staring episode, when she came in to give me my morning meds. I don't remember that.
After the 24 hours were up, Dr. Miller and my neuro agreed that the two absence episodes were not electrical in nature, but they wanted another 24 hours on the EEG to try and capture a convulsion event like the one they had seen on Rob's phone. I asked Rob to go home, ready the kids for another day by themselves, and pick up the tamales I had ordered from a girl off Facebook. Ha! I have been missing my friend Domenica's tamales, from Miami, all these months. I was hoping these would make up for it. I thought they were a decent (but distant) second, but nothing touches whatever special touch Dome and her family put in theirs. Sophia loved them. Rob thought they were okay. Chloë didn't care for them, and Jack wouldn't touch them. But he never did, even in Miami. He doesn't eat much anyway.
Rob brought me some tamales, these, in the hospital. They were 10x better than hospital food any day of the week, even though I was no longer on the Dysphashia 2 diet, that's for sure!
I spent New Year's Eve with Rob in the hospital. Rob temporarily left to bring Chloë to a NYE party a church friend's house, and he brought Sophia and Jack to the hospital so they could ring in the new year with us. I ended up being severely tired when Rob went to pick up Chloë from her party, and I don't remember the midnight hour. I guess I was awake? Rob says I was, but I don't remember it.
Sometime that night, Rob hit the button after I had a convulsion. For the third time that button was pressed, nurses were instantly filling the room, blinding bright lights went on, and a loud alarm sounded. I don't remember the absences, I don't remember the convulsions, but I sure as hell remembered that!
Dr. Miller came in in New Year's Day. Happy 2018! He informed us that my neuro had been the one reading my EEG over the 48-hour test, and he had determined that none of these three episodes were electrical. Meaning, they were not epileptic, I did not have to take Keppra or any other epilepsy-related meds, and I could return to driving safely.
So what was going on?
According to my neuro and Dr. Miller, I was mostly having PNES, or Psychogenic Non-Epileptic Seizures. They were probably psychiatric in nature, stemming from some unknown stressor or trauma. They wanted to bring in the Psych team to evaluate me, but I informed them I am already being followed by Psych for my Bipolar I, PTSD, etc. from my many years of childhood trauma. I was again stunned by this diagnosis, but I have an idea what may be behind these episodes. I've been putting off dealing with it in therapy for years - two decades, actually - but now I think it must be time. It's coming out whether I want it to or not. Ugh. This will not be fun.
Anyway, the EEG tech came in to remove all the electrodes from my head, and I was released shortly thereafter, on New Year's Day.
So, as it turned out, yes, Chloë, I will be home for our 17th anniversary on the 2nd. Woot, woot! We had had these two bottles of champagne for Christmas. Those went unused. They also went unused on New Year's Eve. Finally, Rob popped the cork on our anniversary. I took a sip - barely breathing in the bubbles - and had about enough. Rob finished the bottle the next day. We haven't been able to celebrate much, barely even able to kiss due to the health risks, but we'll get there.
We'll get there.
Unfortunately, right when I came home, we had the first full moon of the month - of the year, in fact. Whatever you may or may not want to believe, those of us who suffer chronic pain illnesses like mine (call it Post-Treatment Chronic Lyme Disorder, call it Fibromyalgia, call it whatever you wish) often suffer the most during the full moons. This is the TENS unit I bought a while back on Amazon.com. It works like a horse, but it's not powerful enough. I often max it out on these worst-pain days.
My doctor put in a medical request for a prescription-level TENS unit through my insurance, but they don't cover these devices. This one would have cost $150, which I didn't want to spend, but finally this month, after all this illness and now on top of that, extreme pain, I relented. I've been sitting here throughout the writing of this post, on the couch, with the prescription TENS unit working on my knees and the Amazon unit working my ankles. If I had four or five more, I might be set, because this picture showing the first time I tried it on my wrists was a total game-changer. Sadly, right now I already have the prescription TENS device on max power.
So... now what? Now what do I do? Other than taking pain meds, muscle relaxers, anxiety meds (sometimes helps, even when I'm not even feeling anxiety, to reduce the pain level), using both TENS devices on max, bringing in my most powerful Essential Oil concotions, and, when all else fails, crying and rocking in pain on my couch? I don't know. I have had many lidocaine pain-relief injections throughout my back, in Miami, and that helped a great deal. Guess I'll ask my primary care doc for another referral to Pain Management.
I'm sorry if I seem to be whining here, now, but I'm freaking 41 years old and I feel so trapped in this broken body and mind. I am so thankful for my über-supportive husband and fantastic kids who have gone out of their ways to try to be helpful to me since I came home from the hospital. So thankful.
Yesterday, on Friday, I had to return to the hospital. Thankfully, this was for a scheduled Upper GI Series of scans for that swallowing study and to see what's going on with the problems I'm having with my gastric bypass, and not for another admission. I felt pretty comfortable (and maybe kinda cute for the first time in ages, haha) in these scrubs and really wanted to keep them! I didn't, though. Maybe I'll get some just for funsies.
Did not like that test, by the by. I was on a table, drinking first a bubbly solution that made me burpy, then the delicious barium "shake," then a pill that got stuck in my throat while I couldn't even feel it there... all while they rotated the table up and back, up and back, and capturing the whole thing on video. The power of fluoroscopy! My bariatrics doc will review those results with me on Monday, we'll go from there.
I literally see a medical professional nearly every day, right now. It's getting a little old, y'all! But I'm being compliant.
Last night, the girls and I headed to nearby Downtown Boise to watch the movie Pitch Perfect 3. We've watched PP and PP2 together before, so we were all excited to go out and watch. Hell, I was just thrilled to be "allowed" out again with my baby girls! The movie was hilarious, by the way, and I died laughing the whole time. Gotta love Fat Amy! Rebel Wilson is such a scene stealer!
Since my second return home from the hospital, I've even taught Chloë how to take care of my Teflaro infusion when Rob hasn't been able to be here to do it. She's so careful! This morning, when Rob had to leave to take Sophia to her showjumping lesson, she did the entire thing by herself for the first time. I was so proud of her. She didn't know what I was doing when I took this, but when the snap took, she muttered, "Are you really taking my picture right now?" Ha. Yes, loves, because I was proud of her for doing such an excellent job and being so attentive.
So for now, here I sit. Yesterday, having my GI test done, running errands with Rob, and then going to the movies with my daughters... I admit I probably overdid it. I'm feeling a little worse for wear today. But not awful. I'm taking it easier today, watching TV, eating a pizza Rob picked up, and running my TENS machines. I have made no resolutions for 2018, unlike in past years, but I have the hopes for a healthier year - both mentally and physically - and learning how to take it easy and somehow figure out a way to relax.
I'm determined to be here for them. And for me.