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Wednesday, January 18, 2012

The Pain of Pain Management

Monday was Bob's 53rd birthday and also his monthly appointment with his Pain Management doctor.

One of the first things I did after Bob came home from the hospital was get him in immediately to see his pain management specialist. When Bob was admitted to the hospital for surgery, prior to the stroke, he was already seeing a pain management doctor for chronic back/neck pain problems and was taking a prescription narcotic/pain medicine. Once he had the stroke, the doctors discontinued his pain meds. Just like that. No tapering back. Later, I was told that Bob most likely went through a severe medication withdrawal soon after his stroke, while unconscious, which certainly did not help his recovery. Once he became conscious, he was so wracked with pain, not only from his back/neck but also new pain associated with the stroke, that he often laid in the fetal position whimpering for hours on end. The doctors would do nothing about it. Me, of course, I made a fuss. Begging and pleading for a pain management specialist to be put on his case, but always meeting with refusal. It wasn't until Kindred that Bob finally got some pain medication. This only because I marched into the case manager's office, unannounced, and loudly proclaimed that this hospital DOES NOT CARE ABOUT THEIR PATIENTS, then sat down and cried my eyes out. I tell you, eyebrows on that whole floor were raised. The case manager grabbed the phone (which freaked me out, because I thought she was calling Security!) and called the pharmacist and they immediately issued Bob a Fentyl patch.

It was the difference between night and day when he got that patch. I came in the next morning, and Bob, bright eyed and bushy tailed, was sitting in bed calmly watching TV. The patch worked well at Kindred, though from there Bob was sent to the Acute Rehab Hospital where he was to participate in daily therapy, but anytime they attempted to move him, he screamed out in pain. So once again, I was on a mission to get more pain management and once more met with resistance.  I was told by the therapists and doctor in charge that "pain was good" and too much pain medication would make it difficult for Bob  to recover as it would make him lethargic. But still, if Bob screams in terror at the sight of the therapists entering his room, is that good? After many repeated requests from me (OK, I did a lot of bitching), I did get a consult with a pain management doctor from the hospital who ordered a low dose oxycodone.

Which didn't seem to help. Unknown to me, though, the doctor ordered it "prn" meaning the patient had to request it. Bob went days without this new medication because he couldn't speak well enough to request it and the nurses never asked him if he wanted it. When I finally figured out what was going on, I remember sitting by Bob's bedside trying to teach him to say "pain medication", just those two words, over and over. But he never could remember those words so finally, after another zillion phone calls, I got a hold of the doctor again and had him reorder the medication on a time schedule. By then, it was Week 4 of Acute Rehab and the therapists were already making plans to move Bob to a nursing home because of "lack of progress". The last week that Bob was in Acute Rehab and getting decent pain medication, he was finally able to move his right leg. Finally able to participate in the therapies without screaming in pain. By then it was too late. He was discharged.

When I think back to those early months, post-stroke, and all the rubbish I went through trying to get proper care for my husband, it still pisses me off. And this from the hospital that had Bob on two very dangerous doses of prescription meds that his endocrinologist later would tell me could have been fatal if not for the fact that I caught the mistakes on the discharge paperwork. I do believe, if Bob had been transferred to that nursing home as the doctor wanted, with those prescriptions and lack of pain management, he would have been dead by now.

But back to present day. The good news is that after Bob came home and I took him to see his pain management specialist who immediately increased both the patch and breakthrough medication, Bob's pain level has been pretty well controlled. The bad news is that going to Pain Management is a real pain with all the stupid federal/state rules and regulations about the control of prescription narcotics.

Case in point, the law does not allow the doctor to prescribe more than one month's supply at a time, so we have to go to that doctor every single month, pay forty bucks, not to mention it takes all day with the wheelchair transport time involved, the waiting around, then about 3 seconds to consult with the doctor who hands me the scripts, then waiting again for the transport ride back home. OK, I can deal with that if makes Bob's life tolerable. But second case in point, now the law is requiring that any pain management patient must have a drug screening test twice a year. This is to insure that the patient is taking the prescribed drugs and not selling them on the street. Drug screening test = urine sample. And no exceptions to this rule. You all know all about Bob's bladder trouble...

So on Monday, here we are at the Pain Management office and they want another urine sample. And of course, Bob cannot go. Thirty minutes in the bathroom, specimen cup in hand, with the medical assistant hovering in the background just to make sure that--what? I don't pee in the cup instead? then a knock on the door as the doctor is ready to see him, then back in the bathroom afterward, once again trying to pee to no avail.

They tell me he's got another chance to pee in that cup next month. And if he can't, I'll have to take him to the urologist (another day-long trip, another $40) and have him catheterized, sample sealed and signed by the doctor, and cart the damn sample back to the pain management office. If we don't do that, Bob can't get any more pain medications. I asked if I can't just bring a urine sample from home, because believe me, we've got plenty of the stuff here. But noooo. Because a doctor must supervise this peeing and that's the law.

I tell you, it's certainly good to know the government is looking out for our welfare...


Elizabeth, John and Jack said...

How annoying!!!? Bob is so lucky to have you for an are doing AMAZING work. Just a thought, can they send a home health nurse to your house to "collect" the sample? Seems that considering the circumstances the pain doctor could write an order for a nurse visit and save you the trouble. Also, side note...they stopped my pain meds in rehab too..until I went crazy...crying in pain. I had brain surgery that required cutting a major muscle in my was very painful. They said I must be "depressed" cuz I complained of so much pain. I was lucky enough to be able to communicate that no I wasn't depressed...I was in excruciating pain. They restarted the pain meds in a few days...and I felt much better. Pain can really be disabling and not good for recovery as you know.

Nikki said...

Wow, the hoops you have to jump through just to get some help. Must be really frustrating!

Barb Polan said...

It's crazy that so many of our medical regulations are about preventing abuse of the system instead of being about the PATIENT!! What is wrong with us?

Elizabeth's suggestion re the nurse going to you and Bob is a good one; there MUST be patients in pain who cannot travel - and if it can be done for them, why not for Bob?

Anonymous said...

D. Keep up your wonderful dedicated care for Bob. Love, Patricia

Rebecca said...

Bob's experience in rehab makes me so angry that I don't trust myself to stop ranting. Since Bob is homebound, asking for a visiting nurse to collect urine might work. I'd consider paying for the nurse myself if my insurance company wouldn't pay. The chunk this stress takes out of you costs too. Money you spend now to preserve your health will look like a drop in the bucket compared to long-term care.

Jenn said...

Wouldn't a blood test work?