Wednesday, February 8, 2017

Released from the hospital -- and near immediate partial relapse

Here is a tip:  Getting released from the hospital often means coming home to a bunch of overdue stuff.  Bills, overdue work assignments, fights with insurance companies over the hospitalization, friends, co-workers, and family members who subconsciously resent your unplanned and undesired hospital "vacation" -- there are plenty of stress points.

The problem with stress points is that stress is a primary trigger for a CPT2 episode.  Coming out of the hospital, you will likely be exhausted, sleep deprived (unless you can sleep through blood draws), stressed out, and a bit disoriented.  Exhaustion and sleep deprivation are also triggers.

So with that as prologue, I came home yesterday, and by mid-morning, I was feeling moderate muscle pain.  My urine was back to being cloudy.  I took that as a cue to pretend I'm still in the hospital and cut out as many trigger events as I could.  I'm going to try to get my CK checked tomorrow and hopefully today's episode was just a minor blip.  I really don't want to be readmitted.

Sunday, February 5, 2017

Hospital Tip: Know Your CPT2

I'm still hospitalized, but my numbers have dropped significantly and I'm hopeful that I will go home today or tomorrow.

This stay has been far better than my last stay in the same hospital some 2-1/2 years ago.  I've been trying to identify the reasons, and I think there are two, interconnected reasons.

First, the nursing staff has been outstanding (with a single exception that might be explained by a needy patient in isolation taking up her time).  They provided me with the information and care that I needed.  Part of it, I'm guessing, may be that the hospital has improved its hiring practices or training.  Regardless of why, I appreciate how much better the staff has been.  Since I may be discharged, and I know the busy chaos that discharge can be, I made sure to call the supervisor this morning to express my deep appreciation.

Second, I am now far more educated about my own condition, and was able to advocate more effectively on my own behalf.  For example, I know from last time that sharing a room can increase stress and lengthen recovery time (my CK rose last time by around 3,000 points overnight when my roommate was particularly disruptive).  I explained all of this to the admitting doctor, and part of my orders were that I have my own room.  Similarly, lack of sleep can be a trigger, so the orders say not to disturb me for vital signs, blood draws, etc., from 11 pm to 7 am.

I've had a different doctor every day during this stay, but my ability to communicate in detail about how CPT2 works has helped them -- even with the lack of continuity -- to stay on top of my treatment.

Last time, I sat in the ER for hours before being seen, and was refused all food until a doctor saw me.  This time I was able to explain the situation far more clearly, and was taken back immediately, tested, and put on D10 drip (and administered IV Carnitor) within about an hour of arriving.  That alone probably shaved two or three days off my stay.

I am able to keep my CPT2 information organized by blogged on this site about it, but for other patients, go with what works.  Just know that you are likely the first -- and last -- CPT2 patient the ER or hospital staff will see.  So if you're well educated about CPT2, you will have information they do not have.

Thursday, February 2, 2017

Hospitalized -- Again

I'm back at the hospital.  I'm writing this from the hospital, and I'm not feeling great, so I expect this to be a far more stilted post than normal.

What Happened Before The Muscle Breakdown?

We decided to move to Vancouver.  I was in Vancouver for work and to look for a house to rent.  I did not intend to come back until I found a place, so I flew out on a one-way ticket and booked a hotel through January 31.

When I left, my daughter had been on antibiotics for strep throat for 24 hours.  Because I was going to another country, I asked my doctor for antibiotics in case I started showing symptoms.

On January 30, I started to feel prodromal.  I ate lunch (my last solid food for a few days) and immediate felt nausea.  As an (unfortunately) experienced CPT2 patient, I knew how dangerous this was.  Difficulty eating plus illness are a bad combination.  I started to have sugary drinks to make sure my body had all of the carbs it needed.  I had all of the things I normally avoid -- non-diet Coke, apple juice, orange juice, regular (non G2) gatorade.  To my relief, my muscles felt fine.

I knew I needed to either get home or wait out an illness in a hotel.  I called the front desk and they were unable to extend my stay, so I booked a flight home.  I then took the first of the antibiotics, so that I would be on them for 24 hours prior to my flight.  I did not want to fly contagious.

I then made the mistake of getting into bed in the hotel.  I didn't have a thermometer, but I'm pretty sure I developed a fever, because I turned the thermostat way up, but felt very cold.  So cold, in fact, that when I needed to use the restroom, I waited until the heater fan turned off because the breeze from the heater was too chilling.

At this point, my muscles still felt completely fine.  I realized that I needed to somehow make it downstairs and across the street to buy more sugar drinks.  It took me a while to work myself up to where I actually got out of bed.  I finally got downstairs, bought a ten-pack of orange juice and a handful of Gatorades and rushed back to the room.

I got into bed and basically did not get up for around over 12 hours.  Aspirin with Codeine is sold over the counter in Canada, so I would take one and get a couple of hours of sleep, be up for a couple of hours, take another, etc.

My flight home was early afternoon, so having finished all of the Gatorade and almost all of the juice, and with the second antibiotic on board (so I was now 24 hours on antibiotics), I headed to the airport.

Both flights were easy, although I'm pretty sure I annoyed the flight attendant on the first flight by asking for apple juice about half a dozen times.  I was determined to make sure I had enough sugar in me to avoid muscle breakdown.  During the layover, I had more juice.

Finally, I made it home around 9:30 pm.  More liquids and off to bed.

Waking to a Whimper:

Around 4 am, intense pain in my upper arms and shoulders woke me and I started to cry out in pain.  I remember it as whimpering, but my wife is pretty clear that it was something between crying out and crying.  I told her "I can't move my arms", which understandably freaked her out.  What I meant to say was "It hurts too much to move my arms", but either way it was bad.

By now, my body was in CPT2 muscle breakdown.  I was cognitively impaired (goes along with CPT2 episodes often), and because of the very unusual circumstances (lots of sugar for 48 hours prior to episode, episode impacting primarily upper, not lower, body) I had trouble seeing that this was a CPT2 episode.  My wife, of course, figured it out immediately and told me to go to the hospital ER.

Rather than do that (because, I'd like to think, of the cognitive impairment), I called my doctor when his office opened and asked if I could get a stat CK test to see if I was in muscle breakdown.  I left the message with his nurse and never heard back (I still haven't).  After 90 minutes, I gave up on the idea of going through my doctor and went to the ER.

Thanks to my proper ER protocol letter and my pretty long-winded explanation of what CPT2 is and how it works, they did an EKG right away together with a CK blood draw.

Surprise -- the CK test came back at around 9,000.  They admitted me to the hospital.  As an aside, the treatment at the hospital, St. Agnes, has been (as of right now) stellar.  I have literally no complaints about how things have gone.  The staff was super friendly and helpful, and there was plenty of empathic treatment.

What?  It rose?

In the ER I was given D10 and IV Carnitor.  So with 48 hours of high sugar availability, D10 drip and Carnitor, I was admitted and they did a second blood draw.  I was pretty shocked that my CK more than doubled from the first reading.

I don't understand this disorder as well as I thought:

Until now, CPT2 was the only disease that could be cured with a regular coke and a pizza.  I turns out that this is not the case.  I was not in carb deficit.  I was being given carbs via IV.  Still, the breakdown continued.  I'm awaiting my third test and praying that it has stopped rising.

What does this mean?

It means that there are outlier episodes where the normal steps are ineffective in preventing onset or stopping progression.  It also means I'm going to research this more, because at the moment it is a bit scary to feel like I'm starting over with my understanding of CPT2.