I awoke in the hospital ICU to a flurry of activity. Four people swirled around my bed, checking vitals and settling me in my room. The clock on the wall indicated nearly three hours had elapsed. Despite my grogginess from the anesthesia I remember a feeling of elation. I was alive!
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| Random photo (because I can't have a photography blog post without photos!) |
Some of you may have noticed my extended absence from blogland. It's taken several days to process the events of the past two and a half weeks, and I'm finally ready to tell my story. Hold on tight, it's a long one! There's lot of information to convey. But I strongly feel it's important to provide all the specifics leading up to the event, not only for my readers to fully understand what went down, but as documentation for myself before the details are forgotten.
My wild ride began on Wednesday, June 9th.....
It's a tradition of mine to visit my parents in South Dakota every summer. Sadly COVID forced the cancellation of 2020's annual trip. My parents are now in their 80s and it killed me not to go. What if something happened before I could travel and I never saw them again? But I didn't want to bring my parents the virus (nor contract it myself from traveling) so I dutifully stayed away throughout 2020's excruciating long months. However I told all my friends the moment I was deemed fully vaccinated visiting my parents was number one priority.
May 8th I received my final COVID vaccine. Looking ahead on the calendar I chose the dates of June 10th-19th for my trip. My parents live in Rapid City, South Dakota, a distance of 1200 miles from Portland, Oregon. Although it's a long journey my preferred method of travel has always been to drive. In my 30-plus years of living in Oregon I've made this trip so many times I considered driving alone no big deal. My plan was to drive to Central Montana the first day, stay overnight with my son, and travel the remainder of the distance the following day (one 11-hour day, one 10-hour day).
Wednesday, June 9th I awoke with a nagging headache. My day full of trip preparations, I pushed the pain aside and busied myself with the long list of chores to be done. That evening I lay down to bed and couldn't sleep. My head was absolutely pounding. Having experienced allergies and sinus infections all my life, I thought this was just another sinus infection. But as the night wore on, the pain increased. My head hurt so bad I began whimpering. This was the worst sinus infection I'd ever had!
When morning finally came, I asked my husband to take me to urgent care. My head was pounding so bad I knew I couldn't drive. Starting my trip today was out of the question, so I texted my son to let him know. At urgent care the doc on duty was perplexed. I had a slight fever, head pain, and congestion, but he was reluctant to prescribe antibiotics. He actually said "What do you think we should do?" I replied that I thought it was a sinus infection and I needed antibiotics and a super decongestant. So he prescribed an antibiotic and Sudafed, and I headed home to rest.
I laid around all day Thursday and by nightfall, after taking my second antibiotic dose, my head and sinus pain seemed to subside. I went to bed Thursday night, my trip still in limbo. My hubby suggested I consider cancelling the visit. But I'd waited two long years for this and didn't want to back out. And I didn't want to disappoint my folks, who hadn't seen any of their out of town children since COVID hit.
Friday dawned and I felt better. Not 100% but I deemed myself good enough to drive. So early that morning, I loaded my car and started out for Montana. It was a long, uneventful 11-hour trip and the only mistake I made was not taking many breaks nor using cruise control (I hate cruise control and rarely use it, even on long drives). When I finally pulled into my son's driveway my rear end was killing me from too much time spent sitting. My son and I had a nice dinner and visit, and I retired early for the night.
Friday night I didn't sleep well. My rear end pain kept me up, and my head was feeling a tiny bit achy. Because Sudafed can cause drowsiness I hadn't taken any all day, so I chalked up my headache to congestion.
Saturday morning, my butt was sore and my head felt a slight bit achy. I knew today's drive was gonna be tough but was confident I could still make it. I'd just have to take more frequent breaks and suck it up and use cruise control. But this 10-hour drive was brutal. It seemed to take forever, as I had to stop often and walk around the car to relieve the pain in my hiney. My headache began to return. As the hours wore on, all I focused on was reaching my destination. Then I could rest.
Finally, finally the highway exit signs for Rapid City came into view. Pulling into my parent's driveway brought a huge feeling of relief. Exhausted, I retired early that night.
Sunday morning, I awoke with a slightly achy head and butt pain but felt good, considering all I'd been through. After eating a couple orange slices for breakfast, I was sitting outside in my parent's back yard when all of sudden I felt the urge to vomit. Luckily I hadn't eaten much yet, so it was only a tiny amount and I was outside so not a big mess to clean up. I reasoned it was just the antibiotic upsetting my stomach. Later that evening we all went over to my sister's home for dinner. While there, I began to notice trouble speaking - slurring my words, stuttering, and having trouble producing the word I wanted to say. Again, I thought it a bit odd, but wrote it off to recovering from my long drive.
Monday dawned. After rising and drinking some tea for breakfast, I again had to run to the bathroom to throw up. Thinking the antibiotic was the culprit, I decided to forego my final day's dose. As the day wore on, I just wasn't feeling well. My head still ached, I felt stuffed up, and I began to feel wobbly on my feet. Was my head so congested it was casing me to lose my balance? Thinking that was the case, I began taking Sudafed again. But by dinnertime I could tell something was wrong. My head pounded, balance still wobbly, stomach churning. I could barely eat any food. Instead I hung my head over the plate mumbling "What's wrong with me?"
My parents suggested we go back to urgent care. It was 6:30 and the clinic nearest their home closed at 7, so we hustled out the door to make it in time. At urgent care, upon checking in the nurse asked me to sign my name to consent to treatment. I couldn't do it. My hand would not form the words. Horrified I tried multiple times, all to no avail.
That put me in a panic. But there was no time to react as I was immediately called back to the exam room. A nurse took vitals and determined my blood pressure was high. Then the doctor came in. I described all my troubling symptoms in detail - the unsteadiness on my feet, the slurred speech, the vomiting, the inability to write my name - however the doctor replied "We don't have the facilities to deal with that here." He then told me I was suffering from a sinus infection and my high blood pressure was due to taking too much Sudafed. He wrote me a prescription for more antibiotics and recommended use of another over the counter decongestant. I was stunned by the doctor's response, but by that time felt so awful I decided to fill his prescription and give it a try.
So back to the pharmacy we went. After running around in there, trying to find the recommended decongestant, we returned home where I again threw up. I felt so ill by that point, I had no desire to take my newly-acquired antibiotic or decongestant and was just barely able to choke down my high blood pressure medicine before collapsing into bed. I slept soundly the entire night, probably because I felt too awful to move.
Tuesday dawned. Nothing had changed. I swallowed my new antibiotic and decongestant and went to take a shower. Immediately after the shower, I vomited yet again. My speech was even more slurred, my balance unsteadiness increased. Concerned about my obvious discomfort, mom and dad suggested taking me to a different urgent care clinic, one they'd used before where they had really liked the doctor. At this point, since I couldn't even keep my antibiotic and decongestant down, I thought it was a good idea. So off we went to urgent care number 2!
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Checking in at the second urgent care clinic, my writing motor skills were now so impaired I had to have my mom fill out the paperwork. I sat in misery, waiting for the nurse to call my name. When my turn arrived, I asked my mom to accompany me into the exam room. The attending doctor was Michael Rafferty, MD. Mom immediately recognized him as the "good doctor" that had helped my dad in a past visit. Dr Rafferty listened carefully as I described all my troubling symptoms. He then performed several neurological tests, the final one asking me to walk straight forward, putting one foot in front of the other. I absolutely wasn't able to do it and instead wobbled all about the place. He then told me "We need to do an MRI." He left the exam room to check the clinic's schedule and a nurse returned with an appointment for 11:30 the following morning, apparently the quickest they could get me in.
So back home we went, me spending the afternoon and evening flat on the couch. I don't remember much of that day, I felt so awful. That MRI appointment couldn't come fast enough.
Wednesday. MRI day. Hooray! I managed to choke down half a banana and some water for breakfast. I thought about taking a shower, but remembering what had happened the previous day decided to skip it. The 11:00 check in finally came and we arrived at the imaging center. Again, I enlisted my mom to fill out the paperwork. Walking was becoming extremely difficult, as my balance was very wobbly and it took all I had to follow the nurse back to the MRI room. The MRI machine was huge and noisy but I just closed my eyes and let it do it's thing. Once the half hour procedure was finished, I was instructed to sit in the waiting room. I was told Dr. Rafferty would be calling me with the results.
Waiting for the call many thoughts swirled through my head. Did I have a brain tumor? Was I having a stroke? What, oh what was wrong with me? But I kept my cool, not wanting to further alarm my already terribly concerned parents.
I didn't have to wait long. Ten minutes later, an office person directed me back to her telephone and said Dr. Rafferty was on the line. Dr. Rafferty got right to the point, telling me my diagnosis was a brain abscess. He insisted I go to the ER immediately, stating "Go directly to the ER - Do not pass go!" Dr. Rafferty told me he was calling ahead to the ER and they would be ready for me.
Stunned I slowly handed the phone back. I don't remember what I said, but mom remembers I told the doc, "Well that doesn't sound good." My dad rushed out to the parking lot to get the car. Luckily, the Rapid City hospital happened to be right across the street from the MRI clinic, so it was a quick trip.
At the ER my mom and I were immediately whisked away into an exam room. One nurse began taking my vitals and another started an iv line (one of many I'd have over the next several days). I frantically remembered that I needed to call my husband to tell him the results of my MRI. Reaching hubby on the phone, I relayed the diagnosis: I was in the ER, and likely to have surgery. He immediately began looking into airplane tickets telling me he wanted to be there asap.
Because I was limited to one person in the ER room, my poor dad had to wait outside. Mom's phone wasn't working so I had to use my phone to text him updates (which was becoming increasingly difficult with my deteriorating motor skills). My sister is an occupational therapist who works home health care for the hospital. When dad told her what was going on, she immediately cancelled all her afternoon appointments and rushed to the ER to be with me. My sis arrived just as a neurosurgeon and his nurse practitioner assistant came into my room.
My neurosurgeon, Dr, Fulbright, was a character. The first words out of his mouth were "Are you vaccinated?" Affirming that I was, he replied "good" and pulled down his mask commenting that he hated talking to patients with his face covered. He then pulled up my MRI on a computer screen and began paging through the images. Dr. Fulbright pointed out two circular areas, one the size of a quarter and the other dime-sized. These were the abscesses that were causing all of my troubles. The expansion of these abscesses was pushing on other areas of my brain, creating the neurological symptoms I'd been experiencing. He told me the surgery involved drilling to my skull and draining out the abscesses. An infectious disease doctor would then perform tests on the extracted pus material to determine the origin of the infection. He asked me what activities I enjoyed. When I replied that I was an avid hiker and skier, the doc cautioned that my recovery prognosis was "good to fair." I understand the doc keeping expectations low, since he hadn't yet looked into my brain, but his response made me pause. However my sister, sitting by my side, exclaimed "Oh Linda you have to." Taking a deep breath, I lifted my head, looked Dr. Fulbright straight in the eye, and said "Let's do it."
After that everything became a blur of activity. An orderly wheeled me off to pre-op. Since my sis was a hospital employee, she was allowed to accompany me (a huge comfort). An assistant came in and did an EKG, another iv line was inserted into my opposite hand, and my anesthesiologist stopped by to introduce himself. My sister told me the hospital usually didn't pull together a surgical team this quickly so the situation was obviously serious. I later learned that due to emergency nature of my condition, Dr. Fulbright had cancelled all his afternoon appointments and rushed to the hospital to take care of me.
I asked to use the bathroom, so my sis and another nurse walked me to a nearby restroom. Upon returning to my bed, the motion of laying down upset my stomach so much I vomited out the meager contents of my stomach. Good timing before surgery I guess, but it made me feel absolutely awful. As they wheeled me to the OR my sister gave me one final hug. Off I went into the unknown. How would I come out from this? Would I be the same? Would there be lasting damage? Would I survive? However, by that point I felt so miserable I just wanted relief. And things were happening so fast I didn't really have time to be scared. The anesthesiologist put a mask over my face and told me to breathe deep. That's the last I remember.
I awoke in the surgical ICU unit nearly 3 hours later. As I slowly came out of the anesthesia fog I remember feeling a huge wave of gratitude and euphoria. I had survived! The awful pain was gone. And it appeared I still had all my faculties.
My parents and sister were soon ushered into my room and it was wonderful to see them. Dr. Fulbright had spoken with them post-op and reported that everything had gone well. He had sucked 5 ml of pus out of my brain, about the size of a small tube of lip balm. My sis phoned my husband and two children and had me chat with each of them to assure my panic-stricken family I was really okay. Hubby, unable to get a flight into Rapid City the day of my surgery, would arrive the following day. My family stayed for an hour and half until visiting hours were over. But that was okay. Absolutely exhausted from the day's events I wanted nothing more than to sleep.
The treatment for a brain abscess involves identifying the bacteria that caused the infection and tailoring the antibiotics specifically to that bacteria. But finding the source of infection takes time. The material (aka pus) extracted from the abscess needs to grow cultures in a lab for a couple of days. In the meantime, treatment was to bombard my body with several different iv antibiotics to keep the infection under control. To prevent brain swelling, I was also given several doses of steroids. For the next two days, it seemed there was always some sort of iv fluid dripping into my body.
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| My lovely incision, complete with staples |
I fully expected to wake up with a shaved head, so was pleasantly surprised to discover I'd retained a good portion of my hair. Whoever had cut it left enough long strands on top that it draped over and hid the incision well. To be honest the loss of hair hadn't ever bothered me - hair can always grow back. But it was nice to look nearly normal. My incision was a large one - ten staples total. Everyone who looked at the back of my head exclaimed some version of "Oh my gosh!" When hubby arrived the next day he took a photo of my incision and asked if I wanted to see it. It took me nearly 6 days before I got up the nerve to look.
I sat in ICU the entire day following surgery. By the next morning however, I was deemed well enough to be transferred to a regular hospital room. The only problem was - none were available. So the hospital staff kept me in my same ICU room. They cautioned that if another patient came in that needed ICU a regular room would be found. But I ended up spending my entire 6 day hospitalization stint in the surgical ICU unit. I was the healthiest patient there! I didn't really mind biding my time in ICU - the nurses were the best of the best and the nurse to patient ratio lower. All of the staff was simply wonderful - I got to know many of them over the next several days and had some excellent conversations. I have always held nurses in high regard but to personally witness them in action has elevated my opinions to superstar status. I wish I could remember all their names - the wonderful young woman who gave me my first shower and washed caked blood out of my hair, the day nurses who were never too busy to get me more water or help me go potty, one night nurse who was able to hook up my iv without waking me and when I complimented her on this skill, she replied "we're ninjas," the sweet nursing assistant that slipped me extra fruit and dessert off an unused food tray, and my final night a funny male nurse who when I complained about the awful hospital gowns quipped "One size fits no one."
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| Hospital chart in my room |
During my stay, I was assigned many doctors - first, my neurosurgeon team consisting of Dr. Fulbright and his nurse practitioner Robert Gantz. Dr. Fulbright visited me in the early morning for the first two days, but Robert Gantz visited me every morning during my 6-day hospitalization (he must never take a day off!). A teddy bear of a man, Robert Gantz was a reassuring daily presence, performing neurological tests and giving me the encouraging news that my recovery was progressing well. My second doctor was Dr. Arbo, the hospital's infectious disease specialist. Dr. Arbo had the job of trying to determine to source of my infection. He must've kept late hours, as he always showed up in my room later in the evening, usually after 7:30. Dr. Arbo was a true detective, asking many questions. Since abscesses are caused by bacteria entering the bloodstream he wanted to know if I'd had a UTI, any skin abrasions, or sores in my nose or mouth (which are usually the most common sources). But all I could tell him was I thought I had a sinus infection, and the only connection I could think of was that I'd used a neti pot two days before getting my headache.
There I sat in the ICU from that fateful Wednesday, through Thursday into Friday. I'd really hoped to hear some news from Dr. Arbo by Friday, but the day came and went. Finally Saturday morning he popped into my room with a diagnosis. He told me they'd determined the bacteria had originated in my mouth. My mouth! I couldn't believe what I was hearing. Dr. Arbo asked me if I'd had any dental work in the last 3 months, and I said no. As a matter of fact, I told him that I was due for my 6-month dental cleaning the following week (which for obvious reasons now had to be rescheduled.) The doc took a tongue depressor and poked around in my mouth for awhile, but found nothing. Finally he looked at me and said "Guess it was a fluke!" I asked him what things I could do to prevent this abscess from reoccurring and he answered that it probably wouldn't happen again. Not very reassuring!
But now that the bacteria had been identified at least I had a direction for treatment. Treatment would be a minimum four week course of iv antibiotics every twelve hours. To infuse the antibiotic, the hospital needed to first install a pic line in my arm. Unfortunately the staff that did this work only were available Monday-Friday. That meant my release from the hospital wasn't going to happen until Monday at the earliest. Ugh!
The other big question was where to receive my treatment. My doctors and Rapid City hospital were willing to transfer everything to a facility back home in Portland. But that seemed extremely messy. The doctors in Portland hadn't performed the surgery, they wouldn't be familiar with my case, and there was a chance some of the details could get lost in translation. Plus, how would I get home when I was now requiring infusions every 12 hours? I couldn't drive for two days. In the end, Hubby and I came to the conclusion - which Dr. Arbo also strongly recommended - that it was best I stay in Rapid City for the duration of my treatment. I could do that. Heck I was retired! I didn't have a job to go home to! And my parents, who of course have been retired for years, were available to shuttle me back and forth to appointments and keep a close eye on me.
So after a long weekend spent in the hospital, my pic line was finally installed Monday morning. After 6 long days in the hospital I was more than ready to be out. A case manager was assigned to schedule the many appointments my treatment now required. Inquiring about my transportation to the infusion center, she asked whether I preferred 6 am and 6 pm or some other time. I thought, ugh this is going to tie both me and my parents down if I have to travel to this place twice a day for the next 4 weeks. But I wanted to eliminate this bacteria and recover fully so told my case manager "Whatever it takes, I will do." In the end, my wonderful case manager was able to procure a portable iv pump that only required every other day visits to the infusion center. Much better!
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| My buddy "Bertha" |
So I'm now the proud caretaker of a portable iv pump. I've named her "Bertha" and she is my constant companion. I'm still working out the logistics of carrying her around - a sling type purse loaned by my sister seems to work best so far. (The worst thing I've discovered so far is waking up in the middle of the night to pee and having to drag Bertha to the bathroom with me.)
I'm happy to report post surgery almost all my neurological symptoms have gone away. I can walk free of balance issues. My handwriting has returned, and I'm now able to sign my name once again. My speech is not yet 100% as I still find myself stuttering, especially when tired. But my sis thinks given time it will fully return. Even if I live the rest of my life with a little stutter it's a small price to pay.
For the next month I will be enjoying an extended vacation in Rapid City, South Dakota. My parents are thrilled about the long visit and so far it has been nice having lots of time to hang out and just talk. We will definitely make up for that 2-year gap between my last trip!
In conclusion to this long-winded tale, I'd like to thank the following people who I consider performed heroically on that fateful Wednesday, June 16th:
1. Dr. Michael Rafferty, who listened, performed the appropriate treatment, scheduled the MRI, made the correct diagnosis, and paved the way for my ER admission. I'm convinced his quick actions saved my life. If I had waited another 24 hours to get help, my sister said it was highly likely I would've been permanently disabled or dead.
2. Dr. Thomas Fulbright and Robert Gantz, ACNP-BC, who dropped everything that Wednesday afternoon and rushed over to the ER to perform my emergency surgery. These men also saved my life.
3. My sister, who hurried over to the hospital, kept my parents calm, sat with me while the neurosurgeon made his diagnosis, held my hand in pre-op, and contacted my husband and kids, keeping them updated throughout the afternoon. I am extremely grateful for her medical training and take charge attitude.
4. And finally my parents, who listened to me when I knew something was wrong and suggested trying another Urgent care. I'm sure they were freaking out inside just as much as I was, but they remained calm even in the face of my shocking diagnosis.
My takeaway from this ordeal - If you think that something is wrong, speak up. You know your body best. If you don't think a doctor is addressing your concerns, find another. Ask questions, even if you think they are dumb ones. There are no dumb questions. Doctors are human and they make mistakes too. (A friend once told me they "practice" medicine) You really have to be your own best advocate.
My other conclusion is this: In life there are no guarantees. You really never know how much time you have. My close brush with death made this brutally clear. So.....climb more mountains, go barefoot, eat more ice cream, watch more sunsets, and hold your loved ones close. Don't take anything for granted. I know I won't - ever again.
It is true when they say life can change......in the blink of an eye.
