Asking For Help That Never Comes

Anytime we find ourselves in the role of  a patient, whether we like it or not, we find ourselves extremely dependent upon our doctors. In addition, we have some unspoken expectations that are reasonable expectations toward those who are treating us. We can reasonably expect our doctors

1. To evaluate our symptoms and accurately come to a diagnosis
2. To posses the skills to treat our disease or refer us to someone who does
3. To posses the skills to perform a procedure, test or treatment for our specific disease
4. To provide appropriate  after care and pain control
5. To be available by phone in the event of an emergency

If any of these assumptions prove incorrect, we as the patient, may experience something very unpleasant, life altering or life threatening.

This week I went to UCSF for a penile implant. There was no doubt in my mind this was the appropriate form of treatment for my post prostatectomy erectile dysfunction. I had absolute confidence in my surgeon's skill level and ability to perform this procedure.

After three days at home, it became clear that I was experiencing an allergic reaction to my narcotic pain medication. I was experiencing  difficulty breathing, shortness of breath, and an annoying wheeze. When I stopped taking my pain medication all of those symptoms stopped. Unfortunately, so did my relief from pain.

On Wednesday morning I called my surgeon's office. I told them this was an post operative emergency situation. I explained that was unable to tolerate my current pain medication. I asked his nurse to have my surgeon call in a new script as soon as possible. She assured me help was on the way and I believed her.

At 5:15pm I discovered I'd made costly and inaccurate assumption. I believed my surgeon's nurse that help was on the way in the form of a new prescription. I neglected confirm this assumption by calling  my pharmacy BEFORE 5pm.

If I 'd followed up and checked it out rather than believe, I would have discovered that a script was not called in. At  5:15pm. my surgeon's office was closed. Everyone had gone home, leaving me in severe pain without a new prescription. 

My first plan involved calling the office within the first five minutes of their arrival the following morning.  I planned to speak with the Office Manager with righteous indignation. I'd  tell her that I'd just been through 24 hours of unrelenting and excruciating pain because a nurse ignored my  phone call on the previous day.  I'd demand she interrupt whatever my surgeon was doing to get me a new pain medication RIGHT NOW!.

Fortunately, my pain spoke to me, asking a very simple question which demonstrated the foolishness of my plan. Here's the question that changed my planned course of action: Are you prepared to spend a sleepless night in unrelenting pain? My answer to that question was a resounding NO. That meant it was time to do something about my pain right now at 5:20pm.

I found the number for the On-Call Resident. I left a message with the operator. Within ten minutes I speaking to a doctor. I told him what happened. Five minutes later my pharmacy received a phone call for new pain medication. My wife drove to the pharmacy to pick it up. After taking my new pain medication I was able to slept continuously for the six hours. Clearly, calling the On Call Resident led to a much better outcome for me than waiting all night without pain relief.

When I go for my first post operative check which happens to be tomorrow, I'll make a complaint to both the Office Manager & to my surgeon. There's no reason to be mad at him, I doubt he was told that I called. He needs to know that his office staff are not following through with patient care.

Making this complaint doesn't take away or make up for the unnecessary time I spent without pain relief. There's a lesson here for all of us who find ourselves in the role of a patient. We can't assume things will go as planned or we'll receive the appropriate care we need with a single request or phone call.

I learned whenever I need immediate and necessary care, it's foolish to wait until the doctor's office is closed before I check and monitor what is and isn't getting done. I wish this wasn't true, but in the end it's our responsibility to hold our health care providers accountable. Making repeated phone calls in a single day may not be our style, but it is necessary, if we don't want to pay the price of being forgotten.

Rick Redner & Brenda Redner are the authors of:
I Left My Prostate in San Francisco-Where's Yours?  
A book written to help couples cope with prostate cancer, and life without a prostate