Knee Update (and a treatise on pain management failure)

Well, hasn't this been an absolute adventure? First off, my knee is doing really well, despite some recent setbacks (call me the Setback Queen!). It is amazing how the body heals itself. 

And now I tell you about societal failure in three stories. 

Last Friday 6/2

Okay, so I already told you about the whole rigamarole I had to go through to get the proper amount of oxycodone, and how self-advocacy got me what I needed. Well, for the holiday weekend at least. Tuesday after Memorial Day the rest of the partial prescription came in (because of course there was an oxy shortage, and of course they had to split the prescription for 40 pills into 21 on Friday and 19 on Tuesday). So I had 19 5mg pills. At the holiday weekend I was down to 30mg/day, and by Friday 6/2 I was down to 25mg, which is pretty darn good if I do say so myself. But it came with writhing and horrible pain as the day wore on, with afternoons, evenings, and the nighttime devolving into a full-body contracting mess as I waited for my 5-6 hours to pass. 

Friday 6/2 I had the home healthcare PT come at 9, and she was like, "you are KILLING it!" -- I could straighten more than last time, and my bend was already at 76 degrees. GO ME. I had walking exercises and stretching exercises, and I was feeling real good about myself. I did start a new program on that range of motion bike, which added in resistance, and that was hard but I did it anyway. I was a WARRIOR. 

She asked if I had enough medication for the weekend, and I said "oh, I have to call in a refill (read: new prescription, there's no such thing as oxy refills) because I'll run out Saturday." She said, "CALL IT IN RIGHT NOW. BEFORE NOON. Don't mess around with that, you're doing great but you don't want to get stuck without." 

So I did. I called the orthopedic office, talked to the secretary, and she referred me to their pharmacy refill mailbox, where I left the required detailed message. And then...I waited. By a bit before 1:00 I was weirded out I'd heard nothing, so I called the pharmacy and asked if a prescription had been called in for me. They said no. I asked if they could call, and they said, "MA'AM, we cannot call about your narcotic prescription for you. You have to do that. It is the law." Oh, okay, I get it. So I called again. 

And again. 

And again. 

Every single line was busy. Bryce called too, busy, busy, busy. Something was wrong. I called the nurse hotline for home healthcare and explained what was happening, and she was like, "oh no... there's nothing I can do for you. There should be a backup. It sounds like the phones are down, keep trying!" 

Anxiety...RISING. 

Finally, at 2:00, Bryce said, "THAT'S IT, WE'RE DRIVING THERE." So we loaded into the car and went to the medical campus. On the way, he suggested I call my primary care doctor. I was hesitant, because I didn't want to look like I was doctor-shopping. Even though I was just trying to get the medication I needed to be reasonably controlled after an insanely traumatic surgery. I called and talked with the secretary, and she said that she'd talk with the doctor and then have him call me. 

When we got to the office, there were electric company trucks everywhere. Bryce went in and there were two secretaries sitting in the dark. Yup, power outage. Phones and computer systems down, down, down. Bryce said, "My wife had a total knee replacement last week, and she's out of pain medication. What can you do?" Apparently their faces went gray and they were like, "Oh no. We can't do paper prescriptions anymore, it's illegal, so there's literally nothing we can do. Try your primary care doctor?"

I was in full blown anxiety work up at this point, and in pain, and it was hard to tell what was feeding what. 

On the way home, my primary care doctor called back. He was like, "you had a refill on Tuesday though. That's three days ago." I had to explain that the refill was actually the rest of a partial fill of ONE prescription. Then he said, "But you've had 65 pills in less than 2 weeks." I lost it. I started crying and wailed, "YES, because when you have a total knee replacement, they use POWER TOOLS on your leg, they use HAMMERS and SAWS and DRILLS and I left the hospital taking 50-60mg per day and I'm down to 25mg per day, which is AMAZING, and I am in SO MUCH PAIN, and I am taking so much less than most people at this stage! It hasn't even been TWO WEEKS! It's been TEN DAYS!" Bryce put his hand on my thigh and whispered "careful, don't make it sound like you're begging." DO YOU KNOW HOW FUCKED UP THAT IS? The doctor did not at ALL want to do it, but he did an "emergency" prescription of 15 pills, which would get me through to Monday or early Tuesday until my prescription came through. I doubt it, but I sincerely hope he got on YouTube and watched a video of a knee replacement for context. 

The rest of the way home I sobbed and sobbed. "WHY DO THEY THINK I'M TRYING TO GAME THE SYSTEM? THEY THINK I'M A SMACK FIEND! I'm on some sort of WATCH LIST now I bet! What the hell!" I was exhausted and full of pain and sadness and frustration. We got home and Bryce took my phone, said he'd answer any important phone calls, and was like GO TO SLEEP. That was a lot. 

Having to fight for basic pain maintenance has been awful. Also, what the hell? You don't want me on oxy? GIVE ME OTHER MEDS. I asked in the hospital about Gabapentin and Celebrex, and I actually HAD Celebrex in my rotation in the hospital, but they didn't send me home with any (non-narcotic, non-stomach irritating anti-inflammatory). And they said "everyone's pain medication is different" and sent me home with 25 measly pills. Literally, they cut my leg off and put it back together. They did CIVIL WAR SHIT to me. 

Over the weekend, I was a bit better but noticed more pain and more stiffness, which had Bryce nervous that maybe I was morphing into this mythical tweaker everyone was apparently worried I'd become. My range of motion shortened. I was in horrific pain at night. But I stayed at 25mg of oxy. 

Monday 6/5

Again at 9:00, my PT came to the house. She saw me and immediately said, "Oh honey, you have a big old hematoma! Oh no!" She did some massage manipulation and basically validated my pain levels. I had a massive amount of swelling around my knee, on the sides, and down my shin. Everything was super tender. I was at about a 7. and I'd had my morning oxy. 

She was all fired up when I told her about Friday. "This is RIDICULOUS. There is NO REASON you can't have Gabapentin and Celebrex. This is CRIMINAL. They don't want to give the oxy to you, a textbook case of WHY WE HAVE OPIODS because of the severity of your surgery, but they won't give you a cocktail where you can get off the oxy. SO STUPID. Also, honey, I think you might have a blood clot in your knee, so you need to see the doctor's office today. Yup, need to go today. We're not doing any exercises, just measurements and calling your office."

PTs rule the WORLD. 

So we went to the doctor's office (now open with lights on, and oh by the way my voicemail prescription was filled without question on Monday, so I guess if there's no outage the system works pretty smoothly, ugh), and saw the physician's assistant. I was in so much pain, easily a 9, and I couldn't sit, I just did laps with my walker around the halls because it hurt so much. Finally we were seen and he was like, "Oh, this looks okay, just real swollen, but you're only 10 days out. It's not hot, it's warm, so I don't think it's a blood clot." I advocated hard again and was like I WANT IT THOROUGHLY CHECKED and, by the way, can we get me a variety of pain management meds? 

OH HOLY JEEZUM. Just like that, I got all the meds sent to the pharmacy. 

But first, it just happened that my surgeon was in the office. He came and checked it out, made sure there was an x-ray so they could check on the structural integrity (all fine), and explained that the hematoma was just a giant pool of blood where it shouldn't be, but that if I drop down to one baby aspirin per day and take it easy for a couple days, then it should resolve. And of course I could get the Gabapentin and the Celebrex. He did do a test where I had to hang my leg over the edge of the table, and it hurt so bad and I panted like an animal and Bryce got upset and yelled "Don't you think that's ENOUGH! Can't you see she's in PAIN!" which was sweet. GOOD GOD MY REFERENCE POINTS ARE ALL SCREWED UP. 

Tuesday 6/6 (and on)

Oh. my. god. Having a cocktail of meds is a freaking GAME CHANGER. I cannot believe I was at the level of pain I was in for TWELVE FREAKING DAYS before it was under control. The Celebrex and Gabapentin have me down to 15-20mg oxy per day now, and while I'm super loopy and brain farty from the Gabapentin, it's so much better than writhing in pain and exhibiting baby reflexes and being just outright nasty by nighttime because it hurts so much. Good for me, good for Bryce. And it's good to keep Bryce happy because he is an amazing caretaker and I am just so fortunate that if I have to have power tools taken to my leg, he's here helping me move through it. 

I will be calling/writing a letter to the hospital about the failure in sending me home with the right meds, and how awful it is to treat someone who is in tremendous pain after an insanely traumatic surgery like a drug addict scheming for narcotics. I know there's a crisis, but this is WAY overcorrection. I should not have been in so much pain for so long. It was wholly unnecessary and it definitely set me back. Shame on our system. Literally, if you don't want me on all that oxy, give me the right balance of meds to manage the pain so I can do my PT like a rockstar and get myself back in business with my new knee. 

Thank you for coming to my TED Talk.