The light goes out

I was looking forward to my appointment with Dr #4.  I had questions about surgery (THR) and recovery.  I was excited to get on with things.  I had lined things up with friends and family- we were all ready for surgery- now just 3 weeks away.  But the appointment did not go as planned.

It was like someone took the Dr #4 that spent so much time with me and was compassionate, and replaced him with a monster.  Remember, I am a nurse.  My dad is a surgeon.  My sister is a surgeon.  I have worked with doctors for over 20 years.  I know the personalities.  I'm okay with demanding and arrogant personalities- to an extent.  I am not even sure that I can accurately convey how I was treated during that appointment.  I was yelled at.  I was treated like an idiot.  I was accused of not taking care of myself.  I have never, ever, in all my years as a patient, as a nurse, as a daughter heard a doctor speak with such disrespect toward a patient.  And that patient was me.  Dr #4 was obviously pissed off that I hadn't quit smoking yet.  He berated me for that.  I was so disappointed because he is a physician.  I am a drug addict- yes I am in remission and clean, but I will always be one.  I understand addiction as a patient and as a nurse.  It is so shocking that those in the medical profession refuse to understand what addiction is.  I am addicted to cigarettes.  I wish it was easy to quit on demand.  I wish I didn't love smoking.  But that's not how it works, and instead of approaching it that way, as the disease and medical model of addiction, my doctor tried to shame me in submission.  That doesn't work.  Ever.  I wanted to be strong enough to laugh in his face when he implied my weakness- I wish I could have looked in his face and said- "Now hold on doc- I quit cocaine!  But it wasn't because some incompetent fool yelled at me!"  But instead all I could do was choke back the tears.  And at that point, I completely lost faith in him.  And he has a reputation for being the best doctor for hip replacements.  What a let down.

He went on to say I should get a second opinion.  He then ripped me apart because he accused me of not being prepared for surgery, or understanding it and the recovery process.  He said I wasn't using the walker all the time, like he said to (which he did not).  He was all over the place.  Even my dad was fuming.  At the end of all of this, I told him that I didn't understand why last week he was so willing to set a surgery date and now, 7 days later, he was suggesting a completely different plan.  What changed? Didn't he understand what this means to me?  I have been in pain for 7 months!  I thought we were headed towards surgery and then this was thrown in my face.

My father and I walked out.  I was shaking and sobbing.  I felt like the roof had just caved in and I was lost again.  I wish that Dr #4 could have been me, and really appreciated how he made me feel.  My dad didn't know what to say to me.  I actually think he was a bit embarrassed on behalf of his profession.  But mostly, I think his heart was breaking watching his daughter struggle through this.  Watching me crumpled and humiliated and full of shame.  He saw me like this before- when I went into rehab.  And then he watched me work through it, find myself and my strength.  He saw me work hard to get my life back.  To crawl out from the shame.  And then, today, he witnessed a stranger bring me right back to that ugly place.

All I knew at this point was that I was back at square one.  I couldn't let that man touch me.  I don't care if he was the best hip surgeon.  It takes more to be a good doctor than technical skills in an Operating Room.  I went home, crawled in bed and slept.  

Walking towards the light

The next month was a blur at first.  It really took me about a week to just adjust to my new diagnosis.  It was strange- the gamut of emotions that I was feeling.  The most surprising to me was that I felt relief!  I felt validated- that my pain wasn't in my head.  That what I was feeling, subjectively, was due to something really wrong with me- something that could be seen, objectively!  One of the worst things about pain (for me) is that unless you are bleeding or obviously broken, or showing some signs of trauma, people don't get it.  It's almost like they are skeptical.  And I have been guilty of this.  I am a nurse! I had to listen to patients complain about pain all the time.  I had to judge whether their symptoms matched their complaints.  And often they did not!  There was a whole movement years ago about whether we, as a medical community, were addressing and treating pain appropriately.  That's why nurses and doctors ask us to rate out pain (you know that 1-10 scale...) over and over again.  It's an attempt to objectify and subjective feeling.  And with the rise of the abuse of pain medicine, sometimes this assessment/treatment thing gets very tricky.  But I digress... It felt good to know that there was a reason for my pain.  A diagnosis.  Other people have this!  And better yet, there are treatments.  There is controversy over the particular treatments I had to chose from (as I would learn in even more detail later), but there were treatments! Choices!  Some patients have none.  For this, I felt gratitude.


But that was pretty much it for the positive emotions.  I also felt anger (why me?).  Sadness (why me??).  Confusion (why me???).  Despair (why me????). I threw a pretty decent pity-party for myself.  It lasted about a week, and I threw a darn good one.  I was irritable.  I snapped at my kids and family.  I slept a lot.  I smoked a lot more (no I wasn't one of those patients who after smoking for so many years suddenly stopped when learning that my smoking was finally showing how unhealthy it was).  I isolated.  I cried.  I cursed.  I let those horrible visions of the wheelchair-living, donut-eating, cat-breeding, disability-getting lonely lady fill my head.


But then I stopped.  I threw myself deeper into my recovery and 12 Step program:  Started working with my sponsor more, going to more meetings.  I went to the pain management doctor and committed to work with his team so that I treated my pain correctly.  I wasn't going to be a martyr, but I was worried about addiction to the pain meds. I reached out to friends again and shared what was going on, talked about it.  I spent hours and hours online, researching and looking for anything I could about my diagnosis.  I practiced asking for lots of help.  I practiced accepting lots of help.  I started taking care of myself again, and being kind to myself.  I started a diet- a serious one.  I used the Medifast program and stuck to it.  It's hard to lose weight when you can't exercise- but I did it.  I made another appointment and got my hair done.  I got a few massages.  I took a trip- so see my college roommates in Phoenix.  I wasn't sure about going, but my mom actually encouraged me to go, I hadn't seen those friends for so long.  And I needed to get away from the stress.  When I got back, I helped my best friend plan her wedding.  I started reading again.  I started listening to music again.  I started enjoying my kids again.  I started doing more.  Even if it hurt.  I took my pain medicine and got outside.  I was determined to be emotionally and physically prepared for surgery.  I wanted to be normal again.  I wanted to not be in pain.  I wanted to move forward, fix my problem the best I could, and resume life...


My biggest hiccup was the smoking.  I cut way down, I really did.  I had been a half to full pack a day smoker and I was down to less than half a pack a day, usually less.  But I hadn't quit.  I couldn't even use nicotine gum or patches.  Remember- it wasn't the "smoking" part he was worried about- it was the nicotine and how it caused blood vessel constriction that was my biggest enemy.  I had to just stop.


About four weeks after seeing Dr #4, I suddenly started having much worse pain.  I could barely walk.  Sometimes my pain would "flare up" for a day or two and then back off if I slowed down and rested.  But this time it didn't, no matter what I did, it was worse.  So I called the doctor.


Dr #4 was very kind when we spoke on the phone.  He said that it was time I started using a walker- to get the weight off the left hip.  This was for my comfort, and also to prevent the femur from collapsing (some of you may be wondering why he didn't have me on a walker or crutches to begin with.  It's a good question.).  He told me to use it when I was hurting a lot.  He didn't want me to stop moving, but also didn't want me needing more narcotics.  He asked me how the smoking was going.  I told him the truth.  He said he needed me to be smoke-free when he operated.  The he asked me when I would like to have surgery- a total hip replacement (THR), i.e. what date in the next month works with me in terms of getting the help and support I would need afterward.  He reminded me that I would be able to do anything I wanted to once I had healed, that my life would be perfectly normal, no restrictions. We chose a date.  He told me to call his office back that afternoon and schedule an appointment with him for a week before surgery, and also said there would be some other things I would need to do to prepare that his assistant would go over with me.  I reminded him that I had an appointment with him in a week, and ask should I keep it?  He said he had forgotten, but keep it and we could talk more about the surgery in detail.  He even joked and said don't forget to bring your dad!


In the next week, I had gotten a walker and a cane.  I was down to about 5-6 cigarettes a day.  I was down 10 pounds already too!  My family and friends had the surgery date on the calendar and we were starting to makes plans for it.  I let my boss at work know the latest and was finally able to give them a tentative idea of when I may be back.  I wasn't happy about getting a fake hip, but for the first time in months, I could actually see light at the end of the tunnel.  Even if I was limping toward it, I was making progress!

The only way out is through

My father and I drove home.  I don't think either of us said much in the car.  We got to my condo and I headed to the patio for a much needed cigarette.  I think I was numb.  When I came back inside, I immediately opened up my laptop and put "avascular necrosis" into Google and began my search.  My father was doing the same thing on his iPhone.  A few minutes later, Dr #3 called and told me to call Dr #4- his office was going to try to get me in that afternoon.  When I called, they actually had an appointment open in just an hour.  I remember then calling to cancel my hair appointment.  It made me very angry to have to do that.  I hadn't had my hair touched since all of this madness started.  I had dark roots and gray hair which certainly wasn't helping my pudgy-faced steroid look.  I hadn't been able to get my hair done because I couldn't sit for that long.  But I finally decided that it was time to do something nice for myself and had made the appointment a few days ago.  Was it symbolic that I now had to cancel?

For 45 minutes, my dad and I quickly received an online education about avascular necrosis, or AVN.  It was not common.  It usually affected men more than women.  Known causes are excessive alcohol intake, and long-term high-dose steroid use.  About 35% of cases are idiopathic- no known cause.  I was a drug addict, but I did not have excessive alcohol intake, and the steroids I had over the past few months, while it was a lot, wasn't long-term or high dose.  As far as treatments- well there weren't much.  AVN turns out to be a very challenging disease because there is no medical management, and the surgical interventions vary greatly in their success rates.  There is core decompression, bone resurfacing, bone grafting (transplant)... The only "successful" treatment is a total hip replacement (THR).  "Successful" because it removes the dead bone completely and replaces the joint with a prosthesis.  But even that doesn't fix the problem for good, because the materials used for THRs wear out over time.  The younger you are, theoretically, the more revisions you will need.  The less impact you put on the artificial hips, the longer they last.  So depending on how long you want your new hips to last, your high impact activity may be limited.

An hour later we were in Dr #4's office.  He was loud and a bit arrogant.  But it didn't bother me.  My dad was a surgeon, and I had worked with this personality for years.  I was actually quite impressed with the time he spent with us.  He explained that my MRI showed that my left hip had about 35-40% necrosis and the right side had 30-35%- both of which are pretty large lesions.  The regular x-rays showed that the femoral heads were still the correct shape- rounded.  When the necrosis gets bad enough, the bone will eventually collapse, which will cause more pain and difficulty with range of motion and weight bearing.  Once the bone collapses, the only choice is to do a THR.  The choice about other treatments- to avoid or postpone the need for THR- is the controversial one. In his opinion, none of the other interventions had a good enough success rate to justify trying.  Basically, his thought was that when the pain got unbearable, the best option would be to do the THR.  At this time, this made sense to me.

Dr #4 was concerned about a number of things.  First, I was a mess in his office.  I was crying and very emotional.  I had already been depressed, this certainly didn't help my outlook at this point.  He observed this and said that I needed time to let this all sink in and get emotionally prepared for the surgery and recovery.  I was a little bit embarrassed- yes I was pretty shaken up.  But I am not by any means a weak person in general.  At this moment in time, I appeared to be falling apart.  I remember him doing something that was pretty powerful- he grabbed hold of my hands and looked me in the eyes and said "Look- this isn't cancer and it isn't a massive heart attack.  You won't die from this.  And young patients with THRs live as full a life as they did before the surgery."

Second, the pain issues.  I was still having sciatica pain.  He was concerned that if I had this after surgery, it might negatively affect my recovery and make physical therapy difficult.  Third, he knew that I had back surgery just a month and a half ago and said it would be better to wait a bit before jumping into another surgery so soon.  Fourth, my smoking.  It was absolutely imperative that I quit.  Nicotine constricts blood vessels.  It could be speculated that my 20+ years of smoking contributed to the AVN- by repeatedly constricting my blood vessels, it could have affected the blood supply to my hips.  But more importantly, good healing needs good blood flow- especially when my bone will need to heal well around the implants.  In addition to the healing aspect, there are other concerns with my lungs and anesthesia, and the formation of blood clots.

He wanted to see me in another 6 weeks, with the goals to be that in this time period, my sciatica would be improved, I would be mentally prepared to go forward with surgery, and that I would quit smoking.  I felt this was all reasonable and made good sense.

Driving home, I felt absolutely exhausted.  It was so much new information.  I was scared.  I was worried.  All I wanted to do was smoke a pack of cigarettes.  Quitting smoking seemed almost impossible.  I was overwhelmed by all of these emotions.  I had these horrible visions of me being grossly overweight and wheelchair bound and living in a trailer with a dozen cats on a disability income.  Which was totally ridiculous.  I went home and got in bed.  I didn't really talk to anyone for a few days.  I needed to cry and yell and throw things.  I needed to go through the emotions.  It was sort of like Elisabeth Kubler Ross's stages of grief.  This wasn't easy for me.  I am a drug addict.  For years, I coped with uncomfortable feelings by taking drugs to mask them.  I numbed out.  That wasn't an option for me anymore.  I had to reach down deep, and use the coping mechanisms I had learned since becoming clean.  This was the hardest thing I had gone through since then, and it was going to be a hell of a challenge.