Wednesday, January 15, 2014

Post-surgery update (long)

The surgery to remove my prostate was last Monday - 9 days ago now.  The surgical technique used was Robot-Assisted Laparoscopic Prostatectomy (RALP).  There were a few delays before the surgery, primarily when an examination of one of the robotic arms before the surgery revealed some contamination of some sort.  That required them to re-clean the robot (I was the second patient getting that surgery that day), and I was finally wheeled off to the OR about 3:00 p.m.

Before I headed to the OR, I'd been given a sedative in my IV.  On the way to the OR, I was receiving oxygen.  Despite all of my fears about the surgery, I was fairly calm as this all happened, thanks to the sedative, and maybe the oxygen.  I remember arriving in the OR and I saw the robot and asked a question about it.  I got an answer.  Then, I started to feel dizzy.  If they mentioned that they were about to administer the propofol, I never heard it.  Then there was darkness.  Knowing that I was intubated, had a catheter inserted, was placed in a bizarre position for the surgery and then cut open and probed by the robot arms is easier to deal with because I have zero recollection of it all.

The next thing I remember is being extremely cold.  I was in the PACU (post-anesthesia care unit), coming out of the anesthesia.  It was about 6:30.  My surgery was shorter than it is for some people because my surgeon elected not to remove any lymph nodes.  As he had reviewed some nomograms pre-surgery, he determined that the chance that the lymph nodes were affected was about 1%.  He said his cut-off to remove some lymph nodes for biopsy is about 2%, so he didn't remove any, which subtracted 30 minutes or so from the surgery.

People in PACU found me some blankets and the shivering subsided.  My wife showed up for a while.  The surgeon checked in with me.  But, to be honest, this is all just a blur.  I do remember asking my wife if the surgery had all gone as expected and getting an affirmative response.  One of the funnier things I'd read about this surgery is men reaching for the catheter as they come out of anesthesia.  If the surgeon finds that the cancer has spread, they abort the removal of the prostate because other treatments will be required.  This eliminates the need for the catheter.  So, if you wake up and there is no catheter, it's bad news.  I had read this beforehand, but I honestly don't remember if I checked for this or not.

About 9:00 or so, I was sent to a room to recover more.  I was dealing with a lot of pain at this point in time, and the nurses where helpful, giving me oxycodone and morphine.  I used the morphine off and on until the next morning.  It was extremely effective, but it did make me nauseous.  I used way less morphine than I was allowed to have (I was allowed 2 mg/hour, and used either 1 or 2 mg every other hour).  I really didn't sleep much that first night, as the pain and the regular visits by staff kept me awake.

The doctors doing rounds visited me around 8:00 in the morning, and they seemed concerned about my affect.  I was still in a lot of pain, fairly unhappy with that, and the morphine was messing with my ability to think clearly.  The surgeon visited me that morning as well, and he reiterated that it was my choice to stay or go home.  I told him that I'd try to go home, but we would have to see how I felt.  By noon, my affect was markedly improved (I had stopped the morphine, which may have been why), and people started talking about discharge.  As I fought nausea and struggled to walk even the smallest amount, I really doubted that I was ready to go home that night.

I met the patient who had gone first the previous day in surgery - a retired VT state trooper.  He was up and walking around with his wife, in great spirits, and reported no pain at all.  He also told me he was staying a second night.  Part of his reasoning was that he lived 2.5 hours away, in the middle of nowhere, near the Canadian border.  If he had any complications, he wanted to be at the hospital rather than at home.  By mid-afternoon, I'd made it clear to the nurse and the resident that I thought I should stay another night.  The nurse seemed to agree, but the resident seemed determined to send me home.

I checked in with my wife.  To be honest, I really wish she had been there with me, but she was at work.  She works for a human resources benefits management company, so the end of one year and start of the next is always really busy for them.  The implementation of the PPACA had further complicated her company's work, so she needed to be at work after missing all of the previous day.

My wife said she could get to the hospital about 6:30 or so, either to take me home or just visit.

At some point, I found myself very nauseous.  I realized that the pain would be excruciating if I actually vomited.  I got very close to that point, but not quite.  The nurse gave me an antiemetic and the nausea faded away for a while.

I was expecting to see my surgeon near the end of the work day, but he never made it.  Instead, the resident on the floor, a urology resident, claiming to represent the surgeon, and a third resident came to the room.  They made it very clear that there was nothing they could do for me at the hospital that couldn't be done at home.  They said my discharge instructions were done and I should really go home.  I was less than 24 hours out of the OR and it felt like they were going to physically throw me out of the place.  I was really unhappy but I seemed to have no choice.

My wife stopped by the hospital pharmacy to get some pain medication for me and then came to my room.  By then, I was physically ready to leave.  I was nauseous, in pain, and I did not want to leave, but I felt like there was no other option.  This turned out not to be true, but in that moment, I didn't know that I still had a choice.  The room rate at this hospital is $1650/day, and I was ready to pay it myself.  Instead, I was put in a wheelchair and sent on my way.

Every bump on the ride home hurt a lot.  As soon as I got home, I headed to the couch to lie down.  I asked my wife for some water and the pain meds.  And for the next 48 hours, I didn't move very much.  I would get up to empty the catheter bag.  I was not going to ask my family to do that for me.  I sipped some ginger ale.  By Thursday night, 72 hours after surgery, and more than 96 hours after my last meal, I was finally ready to eat some food.  I had a bit of soup and a grilled cheese sandwich.  A grilled cheese has never tasted so good.

By Friday, things really started to turn around.  I was vertical for most of the day.  I spent some time at my fly-tying vise, tying some olive woolly buggers for April's opening of trout season.  I ate some more.  And, I got into another disagreement with people at the hospital.  I was still taking oxycodone for pain, although I'd cut the dose by then.

I realized I was going to run out of oxycodone over the weekend and I wasn't sure if I was ready to stop the pain meds completely (I'm still using some pain meds today, so the answer was no).  On my first call, I was only able to leave a message and I was told I'd get a call back.  After three hours with no response, I called back.  I didn't want people to go home for the weekend with this item still pending.  I was told that they were short-staffed but they would get to it.  About 3:00 or so, I got a call back.  They really questioned my need for the medication.  Was I doing everything else I was supposed to be doing?  They seemed alarmed that I was taking Alleve instead of ibuprofen for inflammation.  In reality, the discharge resident had told me that would be fine, but he didn't want to re-print the discharge instructions.  I told this to the nurse.  She told me they could write a script for more pain medicine, but I would need to pick it up myself.  I understand the laws governing prescribing of opiates.  However, on discharge, they'd sent a script to the hospital pharmacy for me, and my wife had picked it up.  I asked if they could deliver it to the hospital pharmacy for me and I could pick it up on Saturday.  "No" was the terse response.  I reminded them that I was on opiates and I had a catheter and I couldn't drive.  I think they knew that I would say this, and this was their "checkmate" position to deny my request.  My wife couldn't get there in time to get the paper script.  They said they could leave it with the on-call resident for Saturday pick-up, but there was no guarantee that we'd be able to find him on Saturday.  One roadblock after another.  Finally, I reminded them that they could legally send a less powerful pain medicine - Vicodin - by phone to my local pharmacy.  At that point, they relented and did that.  I was drained at this point in time.  Why did I need to fight so hard for a medication my surgeon said would be available as long as I truly needed it?  Yes, we have a state level and national level problem with the over-prescription of opiates.  They are often abused or diverted.  But, I'd just had major surgery and I was dealing with real pain.  Was my request that out of line?  Essentially, I felt like I was being treated like a criminal for requesting the medication.

On Saturday, I was even more vertical.  I cooked dinner.  Sunday, I left the house (my wife drove) to go grocery shopping and cooked dinner again.  Monday, I left the house for a few hours and worked for part of the day at a local coffee shop.

On Tuesday, I returned to the hospital.  I had the catheter removed.  I was afraid this would hurt, but while it was an extremely odd feeling, it wasn't pain.  I had very good urinary control as soon as the catheter was out.  I had to prove I could drink water and urinate on my own before I could go home.  This went fine.  My control isn't perfect, but it's way better than the average patient after this surgery.  Full urinary control should return very quickly.

I met with the surgeon.  The biopsy was exactly as expected - identical results to the pre-surgery biopsy.  The cancer was low/intermediate in grade and it had not gotten close to the edge of the prostate.  These are the biggest predictors of recurrence, so he is very sure that I'm completely cured.  We will check blood PSA levels for five years before the medical community will truly consider me cured.  But, just one year of no PSA in the bloodstream will be very convincing evidence.

I also voiced my concerns about the discharge and the pain medication refill to the surgeon.  He told me neither should have happened and he didn't think I was ready to go home when he saw me.  But, he got busy and had to send a resident to check on me.  He said he would talk to all the parties involved in the two incidents.

(On another note, I have voiced two complaints here.  The reality is that my surgeon was amazing, the nurses on the floor were beyond amazing, and I benefited from technology and compassion at many steps in this process.  Many parts of this process were full of care and compassion - people truly concerned about my well-being throughout the entire ordeal.)

Today, I'm still using a small amount of pain medication.  Most of the pain is centered around the incision points, and moving is still a bit slow.  If the weather holds, I'm hoping to get out for a walk this afternoon.  I'm working right now, although I'm not yet back in my office.

I still have a lot of healing to go, but right now, everything looks good.  Hopefully, any incontinence issues will be short lived.  And then, I need to watch and wait for sexual function to return, but that's a completely different issue.  It should resolve, but it could be weeks, months, or even a year or more.

I will return to my office next Monday.  I may get out for some easy skiing on the 25th.  I hope to return to teaching skiing by 2/1, maybe 2/8 at the latest.  I hope to be lifting light weights by early February and increasing those weights over the next couple months.  But, my body needs to heal completely.  In some ways, I need to heal mentally as well.  I will take the time I need to allow this healing to occur.

1 comment:

janinsanfran said...

Damon -- glad to read that you are recovering and appreciate reading about your hospital experiences. Our medicine can do so much for us, but we have so much trouble 1) coordinating the efforts of providers and 2) acting like human beings rather than rule-limited robots. Anyway, sounds like you are going to get well!