Friday, September 20, 2013

i can tell when it hurts

Having been a patient for most of the last seven years, I can tell how some things have changed.

One thing that seems quite different is pain management. After my mastectomy and my diagnosis of metastasis in 2006, I was given loads of painkillers - morphine, Oxycontin, percocet, Tylenol with codeine and others - all in small amounts. I never finished a prescription and I always brought the leftovers to the drug store for disposal.

Fast forward to my brain surgery last fall. I was fortunate to be sent home after two nights in the hospital (you heal much better at home). The last thing that they sorted out was pain management. I remember a team of doctors standing around my bed. One of them asked, "What has worked best for you in the past?"

"Oxycontin," I replied without hesitation. I never felt particularly high while taking it but it very effectively killed the pain.

Several of the doctors exchanged glances. One shook his head sadly and said, "Well, we'll figure something out."

I was sent home with hydromorphone, another opioid. It certainly diminished the pain and since I'd never had brain surgery before, I can't compare it to anything else. I did think it was odd that they would ask me what worked and then send me home with something completely different.

In less than two weeks, never taking more than prescribed, I ran out. My surgeon is really hard to reach, so I called my family doctor. She simply asked me how many I thought I would need. When I hesitated, she said, "You need to take care of the pain in order to heal. Addiction is the last thing I'm worried about."

My doctor has known me for more than 30 years, so I decided she was probably right. And if she wasn't judging me, why should I judge myself? Sure enough, I took painkillers for the next couple of weeks, and I didn't finish the prescription.

I was reminded  of all this on Tuesday, when I was told that I could manage the pain after portacath surgery, with "whatever you'd take for a headache."

It hurt a whole lot more than that and, in the end, I was glad that I'd held onto those last few pills in the hydromorphone bottle. I took the narcotic for two nights and I was able to sleep. It didn't completely eliminate the pain but it did a pretty good job of masking it. And I only needed it for a couple of days.

I've heard from others who've been through portacath surgery who've said they had more than Tylenol level pain. I couldn't swear to it but I'm pretty sure they gave me something stronger when I had my first port put in, seven years ago.

I don't mean to diminish the horror of addiction and I understand that doctors wish to remain vigilant. However, pain medicine was developed for a reason and I would think that after surgery would be a prime time for it to be prescribed.

My friend Lene has written extensively about chronic pain management, the risk of addiction and the patronizing attitude of many medical professionals. If they wouldn't give a prescription to an adult woman with no history of addiction for just a few days, what must life be like for those who live in chronic, agonizing pain?

There's got to be a better way to address the problems of addiction and pain management. Unaddressed pain costs lives, too.


Andrea said...

it might be the last thing you feel like doing right now, but i feel like your recent posts are shaping up to be a second book. the medical establishment could learn a whole lot from your analysis, sister. xoxo

laurie said...

I'm loathe to say it but that's actually an interesting idea.

Sue Breen said...

I have a WHOLE lot to say about this, but I need time to gather my thoughts into cohesive words, you have no idea how much your post hit me after an absolutely horrible experience last week when I was scheduled to have my pain pump "re-installed" will share in a bit... soooooooooo glad you posted this, I hear you!

laurie said...

Sue, I really appreciated you comments on FB. I look forward to when you feel ready to say more.

tccomments2013 said...

dear laurie,

after being a hospice nurse for 30 years, I can attest to the lack of education re: pain mngmt - particularly with doctors. It got so that our hospice medical directors were really good at it, but they always deferred to the hospice nurses if we offered a more effective solution. there are continuing ed classes at frequent intervals for hospice and other types of nurses. I have never heard of a single doctor ever taking those same courses!

as to my own experience as a post-surgical patient when I recently had a hysterectomy, I was promised impeccable pain mgmnt - they even said I would have a dilaudid drip that I could control myself. to my horror, I was given NOTHING post surgery and was in terrible pain because my urinary catheter and the balloon that anchored it was too damn big! it felt like I had a foot ball in my bladder, and I stayed awake crying from 10pm until 6 am. I spent my entire career assuring, going to the ends of the earth, taking every class I could to be updated and informed so I could assure that my patient's pain was managed properly. it deeply offends and deeply hurts me that in my time of need I was not cared for with the same compassion. I will never trust another doctor, anesthesiologist, nor a hospital floor nurse to take care of my pain - I will get it in writing!

doctors often slack on what they know would work best because they are afraid of government oversight; there are patterns of "trends" that arise from the hue and cry about pain medications that inevitably get sold on the street - most of this comes from politicians who want to get elected, raise a ruckus, then media does stories that tend to highlight the "evils" of perfectly legitimate medications used inappropriately. doctors need to form committees to discuss this travesty, but can't or won't take the time. I want to scream at them - first take the time to become educated on the appropriate use of opiates, then step up to the plate and ADVOCATE for your patients - instead of running scarred and perpetuating this utterly nonsensical cycle.

I am so sorry whenever I hear/read about these horrific stories because needless pain hampers healing, and needless suffering is no way to care for a patient. I am so sorry for all you have had to go through to try to get the pain mngmt. you need and deserve.

love and ligh,

Karen, TC

laurie said...

Karen, I am so, so sorry this happened to you. This comment is so powerful, so articulate. You explain the problem so much better than I could and with such credibility and yet you were left in agony for hours. I am speechless. Love and light back to you. Thank you for sharing so generously.

Lene Andersen said...

I think the silence around what it's like to live with pain and the real impact of pain — not just on the individual who has it, but on their loved ones, on their employers and on society — is contributing to this insane situation. Studies show that when prescribed and taken correctly, the risk of addiction to narcotics is one quarter of one percent! If you include people with a history of addiction, the risk rises to a measly 3%. Yet everyone "knows" how dangerous narcotics are. People are afraid of taking them and therefore endure pain they don't have to (which delays healing and impacts quality of life). Doctors are afraid to prescribe them because they can lose their license. It's insane. We live in a culture where it is actually okay to torture a majority of people because a tiny minority might get addicted. What happened to "do no harm"?

Sorry. I saw a soapbox and got on it. I'll shut up now. So glad your GP is sensible