A Need for an Advocate Post Surgery with PPS
by Gladys Swensrud

Making health professionals really listen to those of us who share Post Polio syndrome and look at the problems associated with PPS can be challenging.  I recently had double knee surgery for injuries resulting from a fall I took in August of 2002.  Having just attended the Oakland Kaiser Conference/Post Polio Syndrome/Aging with a Disability held on September 19, 2003 (hosted by the Kaiser CME program and San Francisco Bay Area Polio Survivors group), I knew the advance precautions to take to protect myself in avoiding post surgery complications.  With the help of my family practice physician, I spent considerable time pre-surgery speaking to my pulmonary doctor, doing all the necessary breathing tests, securing a referral to speech pathology to have a swallowing evaluation completed, and speaking at length to the surgeon about which anesthesia I would need to be administered and Post Polio problems that might be encountered because of that anesthesia.

In pre-op, my anesthesiologist sat next to me as we reviewed the list of problems that I have as a result of old polio.  He was very knowledgeable, so I went into surgery without a worry about the preparation of my surgical team for problems they might meet along the way.  I was told because of my particular breathing issues from PPS, I would need to spend one or two nights in the hospital so my breathing could be monitored after being given a general anesthesia, which was necessary in my situation.   I knew that I had done everything possible to secure the best outcome from my surgery, and I was comfortable with the advance work I had done to “dot each i and cross each t.” 

Little did I know that having an advocate after surgery would be equally as important as the advance preparation I had done prior to surgery.  After surgery, I was delivered to a corner room, far from the nurses’ station, without the proper technology where my breathing could not be monitored.  My husband had already left for the night when I realized the dilemma.  I immediately called the nurse and told her that the main reason for hospitalizing me was so they could monitor me for possible suppressed breathing problems related to PPS after receiving general anesthesia.  To my amazement, she told me I was wrong!  They were only concerned with my asthma problem, and using my CPAP machine would take care of that.  I asked myself, “What in the heck was she talking about?”  My CPAP wouldn’t have “taken care” of this type of issue either at home or in the hospital.  To appease me, she said she sent another nurse to check with the doctor on duty and later returned to say he concurred my asthma was their only concern.  I was too groggy and tired to argue with them, but I knew their information was incorrect.  I was also not coherent enough to argue with them about finding another room where I could be watched more closely.  How could this be occurring after all of the precautions I had taken?  This is the point where an advocate (husband, wife, friend knowledgeable about your particular Post Polio problems, etc.) would step in and protect you.

I asked for no further pain medication that night because I knew they weren’t watching or monitoring me.  THAT was a stroke of luck, because after taking two doses of the prescribed pain medication the following morning/afternoon, I did experience breathing issues related to general anesthesia/breathing suppression/adding a medication to the mix, which elicited the concern of those around me.  Realizing how vulnerable I was post surgery frightened me!  It made me understand how important it is to have an advocate with knowledge of Post Polio issues (or at least willing to listen and follow your lead) to speak loudly for you when you can’t do so for yourself.  Needless to say, if I have surgery in the future, which requires hospitalization, my husband had better bring along a pillow because he’ll be spending the night as well J!