Book Eight: Private Games James Patterson

I really like James Patterson. Every book of his is a lightning fast read. It helps that each chapter is less than five pages. Private Games was no exception.

A mad man has targeted the 2012 Summer Olympics in London. First the chairman of the committee in charge of logistics for the Games is found ruthlessly murdered and beheaded on the eve of the much -anticipated opening ceremony. Peter Knight takes a personal interest in the case when he discovers the victim to be his mother's fiance. During the spectacle of the ceremony that night, a popular track star is poisoned and dies. Thus begins a wild ride as Peter Knight, his employer Private Investigation, and a journalist, try to uncover the truth.

This is very typical Patterson. Fast-paced with more twists and than you would expect. The end is very come from left-field too. Really fun.

It All Fell Apart Part Two: Lost Lines, Lost Weight, Found Perspective

So, I finally made it to a room at 5 AM on April 4. I thought I would get to sleep at that point. Not so much. The transport folks transferred me to the bed and then the nurse and tech started doing things to me. First the nurse moved my offending IV to a better position. Then she and the tech put a mattress pad under me the purpose of which I could never figure out. The nurse started doing the typical intake things. She checked my skin, did a social history questionnaire  and the other stuff that needs to be done when you're brought to the floor. They also finally stopped the TPN I had come in on. I didn't much care what they did to me as long as they helped me get warm. The good news was my fever was breaking. The bad news was I was having severe shaking chills as a result. I don't think I've ever had chills that bad. My teeth were chattering,my muscles were all tensed to the point that I couldn't move. They piled blankets on me and after a painful two hours, they subsided.

At this point it was nearly 7 AM. Shift change and morning rounds began. Big Academic Medical Center is a teaching hospital That means rounds are a staggered affair. First. you see a medical student, then the intern, then an attending. The med student was the one who did a lot of the work for me. He told me that my heart rate had come down with rehydration but was still high. He seemed encouraged that my fever had broken. He said they'd just observe me until the blood cultures came back. On physical exam we discovered that I had some tenderness over my kidneys. This led him to think that I might have what he called an asymptomatic bladder infection and not a line infection. I know I didn't go to medical school, but wouldn't the fact I had had a fever mean that whatever was going on was symptomatic? Anyway, he finished his exam and left just as the new tech came in to do the first check of my vitals for the day. Any illusions I had had about this being anything other than a line infection were shattered at that point.

My fever was back and my heart rate was back in the 130s. Awesome. Soon, the resident was at my bedside looking perplexed. There wasn't a whole lot he could do until the cultures came back. I settled in to wait for those. In the meantime, I continued to receive broad-spectrum IV antibiotics and fluids since I was no longer getting TPN.\ The reason I continued to get antibiotics is because central line infections can turn deadly quickly. They always err on the side of caution.

 Per the GI consulting on behalf of my GI, I could get only IV saline and dextrose for up to a week and be fine. I believed him that time. After taking weeks to be anywhere near human again, I'm regretting following that advice so blindly. The thing is, TPN can't be run through a regular IV. There is a version of it called Peripheral Parenteral Nutrition that can be run through a normal IV. If, heaven forbid, this happens again, I will insist on beginning PPN as soon as I lose my PICC.

Around 1 that afternoon, the medical student came in and said that the cultures had grown staph bacteria. This organism grew on the plastic  of my PICC line, even with strong antibiotics on board. The line needed to be removed before we could hope to clear the infection. A few minutes later the resident walked the med student through removing my line and snipping the tip so it could be cultured. I can't remember now whether they cultured  the end that had been near my heart, or the outside end. The good news was I was already on the right antibiotics to treat staph. The bad news was that I would  be stuck n the hospital until at least Monday. I would need a new PICC as soon as my blood cultures had been negative for two days. The earliest that would happen was Sunday. The thing was the people who placed PICCs weren't in the hospital during the weekends. So Monday it would be.

The rest of Thursday and most of Friday passed rather uneventfully. I had an EKG late on Thursday. I also had orthostatic vitals taken at some point to check my hydration status. I checked out fine.

Late Friday afternoon, I had an echocardiogram to make sure my heart wasn't infected. This is a very real risk of central line infection given the line's proximity to the heart. I am convinced that test irritated the pocket where my stimulator lives. Since that  day I have had significant pain in that area. I had Dr. B. check it out before I left since I was on his turf and he said it was fine.

Saturday's labs showed my potassium was low, so Saturday night was spent in tears as I experienced the internal fire that was IV potassium. Sunday was a low-key day. Monday, I had my line replaced and thought I was going home. Turns out my nursing agency had declined to take me back after I was discharged but neglected to say so until a few hours before I was due to leave. So I didn't get homthate until very late Tuesday night.

Since then, it's been a long slow recovery. I lost enough weight that I  noticed. We tweaked my TPN formulation pretty substantially this week to help me regain that weight. I am still more easily fatigued than before.

 As awful as this experience has been it gave some much needed perspective. Before this, I thought the worst thing that could happen was losing  my job. Now I see there are worse things.

It All Fell Apart Part One: Lost Jobs and Long Nights in the ER

It's been awhile. Sorry about that. Life is exceptionally sucky right now.

Remember how I said work was really important to me? Well, I lost that job. A combination of the sequester and my needing to be homebound to get help with TPN led to my being let go. That happened at the end of March.

I spent the last week and a half of March job searching, filing for unemployment, and figuring out how to get my Social Security reinstated. I struggled emotionally to understand how I could be in the position of having to find a job again. It was hard enough interviewing when all I had to contend with were people's attitudes toward my using a chair. Now, I am going to present a whole new set of challenges at some point in the process thanks to GP. Talk about stressful. So things were in major flux.

Then April 3 happened.

I had felt exceptionally tired all day. I didn't think much of it since I'm often really tired. I also had some body pain that was new but I figured was explained by a lowish potassium found on my weekly labs drawn just two days before. As five o'clock neared, I actually took a nap at my desk waiting for my nurse to come. Weird. When the nurse came she unhooked me and I took a shower. I noticed I was weaker and had a harder time transfering than I do normally. Again I chalked it up to being tired. I got dressed while she got my next bag out and ready. She hooked me up, started the pump and started taking my vital signs. She told me my blood pressure wasn't low, but it was very "loud." My pulseox was fine, but my pulse was 135 reading from the pulse oximeter  Wow. That machine is finicky sometimes, so she checked it manually and still got 110. High, but I had just been moving around and getting dressed. Then, she took my temperature. She asked me if I felt sick. No, why? My temp was over 100. Because I have a central line, a fever is a huge red flag for infection.

I had my nurse call the on-call GI covering for my motility specialist. She wanted to call my primary doctor. I knew it'd be best to let my GI handle it since I have the PICC for TPN. While we waited for the on-call to call back, I put shoes on and began gathering my supplies to sustain me through an admission if it came to that. The on-call called back and after hearing my vitals said I needed to go to the ER. I got my stuff together and headed out to the metro.

About 45 minutes later, I made it to Big Academic Medical Center. I headed to the ER and checked in. Every time someone took my pulse, they had to check two to three times to be sure it was right  The first time I saw what it was, I wasn't all that surprised. It was reading 145, but I was feeling every one of those beats. I was brought back to an exam room fairly quickly.

When they hooked up the monitor, my heart rate ran between 150-160 beats per minute and my temp was hovering around 100.  I was sitting still, not running a marathon as my heart rate seemed to indicate.The doc ordered a chest film and blood cultures. The x-ray to rule other sources of infection like pneumonia and the cultures were to check for an infection of my PICC line or in my bloodstream. They drew blood from my line and collected it in a jar that would be allowed to grow after being exposed to air. They drew blood from my other arm as well and collected that sample in a jar that would grow without the help of air. They also wanted a urine sample they could culture to rule out a bladder infection. Thanks to the fever and despite having TPN running, it took nearly three liters of fluid for me to deliver that.

My brother had met me in the ER and was a huge help. He distracted me and turned off my heart monitor every five minutes when it alarmed because my heart rate was so high. The rate began to come down as I was better hydrated, but stayed above 100 for the next two days. My fever trended down too, but was still high enough to be a concern.

Around 10:30, I was seen by the ER Attending. He asked some questions from behind a computer monitor. He decided I should be admitted in light of my fever and tachycardia. I called my dad to let him know I was staying, texted my mom, and then waited to go upstairs. My brother hung in there until midnight, but had to leave at that point. I hung out in my chair for another couple of hours but was transferred to the gurney at 1:30. I busied myself by eavesdropping on the goings-on in the ER. The stories I heard ranged from a woman seeking drug rehab, to a barely-drunk but very angry 19-year old college kid who was apparently there against his will thanks to a contract between the hospital and the university on whose campus the hospital lives.

Around 2 AM an internal medicine doc came down and saw me. She said she wanted them to stop my TPN in case that was a source of the infection. Apparently fungus likes to grow in TPN. Who knew? She said I would be given a peripheral IV in my right arm so that they could stop using my PICC.

The ER nurse had started me on two broad-spectrum antibiotics, Zosyn and Vancomycin  which I was on for the duration of the admission at twice daily dosing. She also started an IV in my right hand that ranks near the top of my Most Brutal IV Experiences list. She found a good vein quickly. When that vein rolled, as my tiny red-head veins are wont to do, she FOLLOWED it. This fishing expedition meant an extremely awkward and painful placement into the boniest part of my hand. The bruise that line left  is only now starting to fade.

Around 5 AM after nearly 9 hours in the ER, I was finally brought up to the fifth floor where I would spend the next six days.

Stay tuned to find out what grew!

Books Six and Seven: "A Discovery of Witches" and "Shadow of Night"

This is a double-book post for a good reason. Deborah Harkness' A Discovery of Witches and Shadow of Night are two-thirds of a trilogy whose final part hasn't yet been released. They are fantastic.

In A Discovery of Witches we meet Diana Bishop. She is an historian of alchemy doing research at Oxford. We soon learn that Diana is a member of a family of witches and that she is a reluctant witch. She uses her magic to fix a clogged sink or to repair a broken  washing machine periodically, but refuses to let her magic influence her work as a scholar. One day, she fills out a call slip for a manuscript that is unlike anything she's ever seen and is unwittingly thrown into an adventure that spans continents and millenium.

On the day Diana discovers the strange manuscript, she is being watched by the other player in this story.  Matthew Clairmont is an Oxford scientist studying DNA. He and Diana meet and quickly fall in love. Like Diana, there is more to Matthew than meets the eye. He is a centuries-old vampire. The facts of Diana's lineage and Matthew's status as a vampire mean their  love is forbidden by the terms of an  ancient agreement struck between the three non-human races/ As their love deepens, things start to happen. 

The story continues in Shadow of Night. After discovering that she can travel through time, Diana brings Matthew back to sixteenth-century England to try to find someone who can help her understand her growing magical talent. When they get there, Diana discovers that Matthew is harboring many secrets.

Part Harry Potter, part The Historian, these books are a fun escape. I am very excited to see how the story ends.

Escape Fire: The Fight to Rescue American Healthcare

Last weekend I watched the feature-length documentary, Escape Fire:The Fight to Rescue American Healthcare. It was enlightening.  It talked about what was broken in America's healthcare system. The thesis of the film seemed to be that while systems are in fact to blame for the dire strain our healthcare system is under, it is us, the people of this country who bear the brunt of the responsibility.

How did I come to that conclusion? Because the film spent the majority of it's two hours enumerating the high costs and consequences of obesity related illnesses. All of the experts interviewed said that our systems need to devote more resources to helping people prevent costly illnesses like diabetes, strokes  and heart attacks. They were emphatic that we don't have a "health care" system, rather we have a "disease care" system that is reactive rather than proactive. One example of this was a woman who had uncontrolled diabetes and high blood-pressure. These unchecked conditions led her to undergo TWENTY-SEVEN different cardiac procedures that included stenting and open-heart bypasses. Twenty-seven. Unbelievable. Once she was seen by the Cleveland Clinic her chronic conditions were addressed. She required another bypass even after that.

I don't dispute that obesity is epidemic in this country. Two-thirds of us are over-weight or obese. Fast food is everywhere, even in schools. I also can't deny that the illnesses that result from obesity must be a drain on our healthcare system.

You may have sensed there's a but coming. There is.


BUT, there are a slew of chronic illnesses and conditions that are not triggered by lifestyle choice and which cannot be reversed once they manifest. Gastroparesis is one of them. More resources should be spent increasing awareness among the medical community of the impact of these poorly understood conditions. The chronically ill deserve compassion and appropriate care. Too often  we get brushed off, told it's in our heads when we have a defined illness.

So yes, doctors need to be able to spend more time with patients  Yes Medicare needs reform. Finally, yes society needs to address the forces behind our obesity problem. Don't forget the rest of us, though.

The Chronic Illness Clock: A Treatise on Waiting

In the last two years, my conception of time has changed dramatically.Before GP, my day was governed by mealtimes, commute schedules, TV shows and sports events. Now, my life revolves around med schedules, nursing schedules and when I need to take TPN out of the refrigerator.I don't need a clock to tell me when four hours has passed. My escalating nausea level does that for me. I don't need to know when typical mealtimes are, I no longer feel hunger. On the rare occasion that I do, the urge doesn't last more than about five minutes leaving me little time to actually act on it.

Other than the practical day-to day realities of time when living with chronic illness, time plays a huge role in my life with both illness and disability. At the beginning of my journey with gastroparesis, I kept waiting for this horrendous "stomach thing" to go away. That's why I didn't dash right to the doctor. No one thinks that a symptom like nausea will become chronic and will effectively ruin your life, Once I realized I needed help, time seemed to crawl. I was always waiting. Waiting to see that first clueless GI. Waiting for the things he told me to do to help me. Waiting to see the second GI. Waiting for the testing to be done and then the results to come back.

Even after my diagnosis, I was still perpetually waiting. Waiting to see the Motility Specialist. Waiting for the testing the surgeon needed to be done and results to come back. Waiting for surgery dates. Waiting to recover. Waiting to see if I had any improvement from a surgery. I'm still there when it comes to the stimulator. I ask myself daily WHEN will it start working? When will I be able to ditch TPN? If anyone could tell me that, it would make the huge changes I've been forced to make to accommodate the need for TPN worth it. All of this waiting has got to be worth something, If not, I'll feel like all of this has been a waste of time.

I'm tired of waiting.Get with the program body.

On Inclusion Part One:The Early Years

Today I finally watched Including Samuel. The documentary tells the story of one family's journey to educate and integrate their son Samuel, who has cerebral palsy. I've wanted to watch the film for a long time. The family is from New Hampshire, my home state. I also consider myself an inclusion success story.

I began my public school career at the age of three. I had been receiving therapy through my county's Early Intervention program since about nine months old. Federal law says that at age three services should be provided by the public school. So I was bussed about an hour each way every day to a preschool program in another district that was tailored to meet the needs of students with disabilities. After that first year, my parents led the charge to bring the teacher from that program to my district. The program that was born out of that idea still exists today. I  spent two years in the preschool program. The hope was that with the right support my motor skills would catch up and I could join my classmates. At age five, I became one of the last kids to participate in what was called "Readiness." It was a class between preschool and kindergarten  I spent a lot of time working to improve my fine motor skills.

 I had a fantastic one-on-one aide in those years. She was literally an ever-present helping hand, She also learned the range of motion routine that we needed to do  twice a day to maintain my flexibility. I admit it wasn't always easy to have to be pulled away from my class to do the stretching, but as I got older we were able to find time during the day to do it that was minimally disruptive. Eventually, we did it either during gym or recess.

Aside from needing more physical help than my peers, I and my parents wanted me to be treated just like the other kids. I did the same classwork, took the same tests, completed the same projects as everyone else. I had accommodations  yes, but academic expectations were no different for me because of them. Starting in second grade, I was provided with a computer for use in completing class and homework. This accommodation was made once my school team realized that writing by hand was never going an easy thing for me. I was provided a laptop every couple of years through the end of high school.

There were battles at every turn it seemed. I participated in a summer school program of sorts focused on maintaining my physical abilities over the summers and minimize the risk of physical regression. My parents always went to the mat to get the district to continue paying for my aide so that I could start each year in the best shape possible, One year, the district even threatened to cut my aide's job during a round of spending cuts. I wrote a speech and was ready to deliver it at a school board meeting when the matter was somehow resolved without any job losses.

There's a lot more to say on my experiences with inclusion, so I plan to make this a series of posts. Stay tuned for more!