Options: New vs. Old
The last two weeks have been indescribable for me. I’ve been to the moon and back! In my last blog I explained what DBS programming was like for me. And for a week afterward I did well. Hoorah — I felt normal again! I was immensely pleased. But then on a Wednesday night I went in to the CTICU to work a regular 12-hour shift, which eventually turned into a 14-hour shift. Short staffing, in relation to the high acuity, is a constant battle for the CTICU. Computerized charting seems to have become an eternal task. That night we opened several chests due to bleeding. I had been assigned a young 40-year-old woman who had undergone a double lung transplant and who was beginning to show signs of early sepsis. Her clam-shell shaped incision also looked like it was going to dehisce. She required complete care the entire shift. After my 45-minute bus commute home, I collapsed on my bed in a daze from both mental exhaustion and physical fatigue. My headaches also had reoccurred by that morning. What was I left to do??
After contacting my doctor, it became clear that there was some relationship between my stints in the ICU and these headaches. Maybe there was some sort of weird interaction between the magnetic fields of the equipment and the DBS system creating more spread of electricity or some strange magnetic field in the brain, which causes these headaches even without any obvious failure or change in the system? This is what Dr. Mike theorized. After a second shift in the CTICU I knew that I was faced with several unexpected options — startling, unforeseen choices.
I outlined my options:
1) Quitting the ICU job completely. Despite being in half a brain fog Friday night, I went in to work anyway, hoping that my symptoms were just temporary. Instead I ended up sleeping at the desk for 2 hours or so, which I’ve never done before as I’m always on the move, always finding things to do or read etc. I also unexpectedly finally found out that the CTICU has these “fire detector-like boxes†mounted in the ceilings. They make the entire electrical and computerized system in all the ICUs WIRELESS, thus I surmised that this may be the source for extra electromagnetic fields. Not a soul at the facility had told me that these existed as they were built when the facility was revamping all their ICUs 1 year or so ago. These boxes did not exist in the old ICUs before Jan 2006 when headaches were not a problem for me. So I’m feeling angry and pissed off at not knowing about these possible additional electromagnetic field sources and now knowing that potentially preventive measures could have been taken over the last year.
2) Turning my DBS system off completely is my second option, but this always resulted in my dystonia symptoms becoming 10 times worse than without the DBS device at all.
3) Reprogramming me again. But this process was getting tiresome every 6 to 8 weeks.
4) Removing the DBS system completely. I am thinking more and more about this option. I was identified as a “DBS failure†last December 2005, and these words haunt me everyday as I’m now beginning to realistically believe them. The person who said them should have never done so as it’s affected my faith/will in myself in adapting with this rollercoaster ride. I no longer saw myself as an optimal DBS patient. (Siggghhhh….)
5) Letting settings stay unchanged for an extended time period.
As time has gone on, I am concluding that adapting to living with dystonia, despite pain, abnormal postures, and the need to use sensory tricks, medications, and MyoBloc is perhaps easier than what is required for this ever changing DBS ride. Now the treatment is going to take me from a job I love - ICU nursing although my NP role still exists. This frightens me and I’m feeling panicky, worried, anxious, and upset. This wasn’t what was supposed to happen with DBS. So far I can count the number of months since implantation (Dec 2004) when the symptoms outweighed the benefits that I have encountered – 8 months out of 20 were filled with normalcy, routines, ordinariness, and typical, habitual activities. However, I can proudly report that I have met 3 out 4 of my “life with DBS†goals anyway - riding a moped in Rome, walking in stilettos in Milan, and riding a bike in Aruba. The only goal that remains is visiting Israel! Yes, these are my options as I see them. Which one I shall choose remains to be seen. Help!!!
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