Choosing Pain or Taking a Risk
Richard survived the unintended Fentanyl overdose and was released on Friday – our 16th anniversary and Robert’s birthday. It certainly was a day to celebrate!
What a difference a year can make.
A year ago, we were in Rome and then on a cruise to France, Spain and Italy again. It was the trip of a lifetime (after a year, I can forget about the pain Richard was in after the flights, the lost luggage and all the extra activity).
No, this year my husband was lying in ICU because his doctor inadvertently filled his abdomen (instead of his subcutaneous intrathecal pain pump) with 40 ml of Fentanyl.
Yes, 40 ml.
Richard not only has the pain pump but has the “big boy.” I talked to the doctor in charge of the clinic (the one who has his name on the door) and he explained what happened called a “pocket fill.” It’s rare, he said, and has happened twice since he started using the pumps.
After doing research and friends sending me information, this is apparently a known risk for these devices and there is a recall on them. The company doesn’t recommend removing them but developed extra precautions to reduce the risk of the pocket fills.
Note to company: they didn’t work (although I have no idea if the doctor even followed these “extra precautions”).
Last week Richard was going through extreme withdrawals and was miserable. We knew what would come next – the pain. Since the pump refill didn’t actually happen, his pump doesn’t have any medication in it.
This thing, as mad as I am about this ordeal right now, has changed Richard’s life. Before the pump, he had to control his pain with extreme amounts of strong oral narcotics.
He couldn’t drive; he had wild mood swings; he was grumpy and when he wasn’t grumpy, he was sleeping.
A decade later, he still talks about not ever wanting to put the kids or me through that again. To him, he is secondary in the equation. He would love to be out of pain but, more than that, he doesn’t want to be that person again with his family.
I tell him that it is okay, that period of our life is behind us. The kids and I all understand what was happening. It was difficult but it’s over.
Now the pain is back. Extreme pain. Debilitating pain that stops him in his tracks and has my husband in tears.
The pump is not functioning and he is feeling the full effects of life without it. He cannot get comfortable; he cannot sleep yet he can barely get out of bed. He cannot do much of anything except try to relieve his pain with a heating pad, heat wraps, a TENS unit, some Advil and a few of his Hydrocodone.
He has laid down in a tub of warm water, showered several times so the warm water can ease the pain.
Richard is usually boisterous and loud with an inner monologue that has no understanding of the concept of “inner.”
Now he is quiet.
He speaks softly and not often.
This is not my husband.
Unfortunately, we have not yet been able to find a different doctor who works on these pumps or who might have a different pain solution for him. Richard has to choose between living with this pain while we search for a new doctor or go back to the same pain clinic that put him in the ICU.
The lead doctor was not the one who overdosed Richard so Richard has agreed to return to the clinic but only having the lead doctor work on his pump (“routine” refills and everything). (Only until we can find a new doctor.)
We had suspected the pump was malfunctioning before all of this and have been pushing for months to get that figured out. Richard was experiencing achy joints and all sorts of ailments (many symptoms of withdrawal) so the doctor suggests an MRI dye study to view the pump and see if it is working.
That is scheduled for Wednesday at 6:30 a.m. Because we have Robert, Richard’s mom will take Richard to the appointment and I will finish getting Robert ready for Day Program and then meet them at the clinic.
Richard has to be put under anesthesia for the dye study so he needs someone with him all day. I’ve taken the day off from work but I suspect his mom won’t leave his side until he wakes up.
This makes me nervous but I know Richard wants to be out of pain. Let’s see what is going on with the pump and then discuss other pain control options with this doctor. If Richard can get some sort of pain control then we can continue our search for another pain management doctor.
This is a risk and anyone who knows me, knows I am very risk-adverse. However, I know Richard would not make this choice if he was able to find some other way to get out of pain. The dye study itself won’t get him out of pain but it is the first step in that direction.
I’m sure everyone is shaking their heads and thinking we are crazy but this pain has to stop. (Actually, I know those of you here will not judge and will be supportive. I think non-caregivers might be shaking their heads.)
The quiet is starting to freak me out.