Pain Scale

There is, apparently, no objective pain scale to be found on the Internet. Instead there are many angry nurse blogs complaining that there is no objective pain scale. And that patients who are clearly not in agony still say "10" when asked what their pain is on a scale from 1-10.

In order to avoid confusion on this issue, below is the pain scale I will be using throughout this blog.* Maybe I will post it by my bed in the hospital so the nurses tending to me can also benefit from its clarity.

0 - No pain.

1 - Conscious of occasional discomfort in the affected area, but discomfort is tolerable and does not inhibit daily activity.

2 - More steady discomfort in the affected area, however still tolerable and not inhibiting of daily activity.

3 - Some pinching, throbbing or sharper spikes of pain in the affected area, perhaps causing a brief wince. Discomfort still tolerable but beginning to make you think about favoring that area while moving/bearing weight on it.

4 - Overall higher level of pain. Activity of the affected area limited in an effort to lessen pain. Mildly distracting but non-strenuous daily activities like talking and reading are still possible.

5 - Pain level has become distracting, causing irritability when talking, inability to concentrate on reading or other activities. You are definitely not moving/bearing weight on the affected area. Mild sporadic profanity begins.

6 - Now you are getting pretty pissed off about this pain. Where is the f'ing nurse?!

7 - Tears, gasps and desperate mewing in between sobs. Mommy evoked.

8 - Wailing and white knuckles. God(s) evoked.

9 - You begin to think you have chosen the incorrect hospital for appropriate pain management. Lawyer evoked.

10 - Someone has lit your body on fire and is now attempting to put it out by beating you with track shoes. (Flip-flopper.)

*I reserve the right to alter or amend this pain scale if it turns out that writing it while not in pain, pre-surgery, on a Friday afternoon after lunch, has led me to grossly underestimate and/or mischaracterize any or all of the aforementioned pain levels.

Last Tennis Match

Five days to go.

Tonight I played my last tennis match before surgery. This time last year I was playing tennis two or three times a week, and was in the process of signing up for the three leagues I played in last summer, including one that I captained all the way to Sectional finals.

In the last couple of months I've played tennis maybe once every two weeks, with mixed results in terms of post-match pain. The decrease in my tolerance for a vigorous tennis match has definitely been one of the most saddening manifestations of my hip problems. I am hoping this surgery will bring me back to the courts as frequently and as capably as ever.

That said, of course I played some of my absolute best tennis tonight. Always good to go out on a high note.

My preparations for surgery are pretty much complete. I am on track to tie up all loose ends at work by Friday; I am on my way to being packed for what I expect to be six weeks away from my apartment in the city. I have not bought any of the equipment recommended by many other bloggers -- the grabbers or the sock donners or the bath chairs. I figure I will get (a parent to get me) what I need if I need it. I already have crutches from hurting my knee two summers ago. So my bag is mostly full of books and lounge pants.

My hip pain has been pretty minimal these last few weeks. It comes and goes, sometimes not seeming related to my activity level. During tennis yesterday I felt discomfort in the back of my right hip, or maybe in my lower back on the right side as a result of some compensation for the right hip. I also felt a sort of soreness on the outside of my hip, which is unusual. And afterwards of course the anterior labrum (basically the front of my hip, right at the crease when I lift my thigh) gave me some pain, which was to be expected.

My left hip has also piped up with a few twinges in the anterior labrum a few times this week. But none of this pain has been at all severe -- usually about 1 to 2 on a pain scale -- so it hasn't inhibited my activity more than to warn me that I should think about easing up.

Mentally I've been mostly unaffected by next week's events, other than a gradually receding paranoia that I will suddenly be felled with a cold and all my preparations and planning will be tossed out the window as my surgery is postponed for months and months. But as the days count down and I remain healthy, even that worry is fading.

Two Weeks to Go

Today was my third and final autologous blood donation prior to the surgery. I was glad to see that my iron-rich diet and iron supplements had raised my hematocrit level to 13.4 for this donation. My blood pressure was low, though: 90/60. My blood pressure has been lower and lower at each blood donation. I'm not sure why, or if I should be worried about it.

In any event, today's blood donation was much better than my donation during my pre-op visit to Boston. Today I was at the New York Blood Center again and I had the same technician, Skip, as I'd had during my first autologous donation -- the guy knows what he is doing. The whole process is as quick, efficient and painless as puncturing a vein and draining a pint of blood can be, I suppose.

I have also learned my blood type as a result of these autologous donations -- I have B+, just like my mother. And my secretary, for that matter. Strange to think I have gone 29 years of my life without knowing my own blood type. Only 10% of the U.S. population has B+ so it is even better that I have three units of my own blood standing by during the surgery.

Today's autologous donation was the last preparatory appointment I had on the books prior to surgery. Now I just wait two weeks, continuing to keep as healthy as possible, and continuing with iron-rich foods and iron supplements to get my hematocrit back up in time for the surgery.

I also found out today that my insurance (Anthem Blue Cross) has authorized the surgery as "medically necessary," which is an important step in having the entire expensive procedure and inpatient costs covered. All the contact with the insurance company was handled by the hospital, so luckily I was spared much of the wrangling that some women have had with their insurance companies over this surgery. At least for the time being.

Staying Healthy

Now, in last few weeks before surgery, the most important thing for me to do is remain healthy. I have heard too many horror stories of girls who have gotten a cold right before their surgery date and have had to have the whole thing postponed. Best to avoid that if at all possible.

DIET

Of course I am eating a healthy diet. Lots of fruit, vegetables and lean protein, very little sugar and starch. I have completely cut out alcohol. I am also focusing on iron-rich foods, to help my blood bounce back between autologous donations. So that means dark green leafy vegetables, red meat, beans, etc. A quick Google search can bring up a more comprehensive list. Liver anyone?

I am also taking iron supplements in addition to my usual multivitamin, omega 3 and calcium. There is a lot of information out there about what supplement to take (or avoid taking) with what food to increase absorption, but I just can't be bothered with taking it all in and regulating myself so much. So I'm just eating as healthily and ferrously as possible, taking the supplements, and hoping it all comes out in the wash. Or absorbs in the wash, as it were.

I have to mention that iron supplements will unpleasantly affect your digestive system. And I will leave it to you to look up why that is and what you can do to ameliorate some of the problem.

EXERCISE

Since my hip has significantly been increasing in pain over the past six months or so, I have been decreasing my activity level to compensate. I can no longer walk for long periods around the city (like to and from work) or play tennis at the frequency I used to. I can eke out a match here and there, but I will pay for it the next day (or even towards the end of the match).

For the most part, I am not usually in much pain on a daily basis, but that is because I have curtailed my activity level so much to avoid aggravating my hips. I don't take (and have never taken) painkillers when my hips begin to hurt -- not because I have anything against painkillers, but because I just figured the pain was a signal that I should stop. This kind of hip pain is not pain you can "work through" like having sore muscles that warm up and loosen up; this is pain that gets worse the more you do. So I figured if I mask the pain to allow myself to do more, I am just going to pay for it in the end (or cause so much damage that I would need painkillers to do even routine things in life). So basically my "painkiller" is to stop moving around until my hips stop hurting. Which has meant I don't move around much anymore.

So with that backdrop comes the challenge of getting myself into surgery shape without causing myself pain.

For cardio I have been doing the bikes (seated and stationary). Elliptical hurts my hip. I also swim, since I am lucky enough to have a pool in my building. I usually hate swimming laps, but since I got a swimming armband and earphones for my iPod, the boredom is gone!

For strength training I have been doing weights (both general circuit training and a specific focus on the crutching muscles: lats, pecs and triceps) and some Pilates mat exercises that focus on the muscles around the hip. I also do some of the hip muscle exercises in the pool after swimming my laps.

To be honest, I've only really gotten serious about this pre-surgery health-nuttery since last week -- most of the PAO women whose blogs I have read started much earlier. But I was already in decent shape, with good muscle tone from regular visits to the gym prior to this pre-surgery frenzy. So I'm not starting from zero. I'll just have to do my best for the remaining 2.5 weeks!

Pre-op Appointments

Yesterday I had my pre-op appointments in Boston with the various hospital departments and Dr. Millis' team. Everything is now go-for-launch.

It was quite a full day, especially since my mother and I drove up to Boston and back to Connecticut the same day. Seven hours in the car plus five hours at the hospital minus one pint of blood equals exhaustion.

ADMITTING

First appointment of the day was with Inpatient Admitting. I met with a nurse who did (another) full history and vital signs, and discussed the surgery process with me. Not the actual surgical procedure, but the process surrounding the surgery.

On the day of the surgery I am to arrive sans jewelry, colored nail polish, tampons... basically nothing foreign on or in my body. Last meal must be 8+ hours before surgery (so basically dinner the night before). The nurse advised me that one should make sure one is not constipated coming in to the surgery because one gets more constipated from the anaesthetics. Also best not to have a big meal the night before because you will regret it when you wake up after surgery and throw up everywhere because you ate too much the night before.

After the surgery I will go to recovery and then my room. They can't promise me a private room since I am a low priority for a single room (i.e. I am not carrying an infectious disease or something of that nature) but they told me they would not put me with a child. Even though it is a children's hospital they do treat adults (obviously) and so I'll get an adolescent or an adult roommate, if I have one.

Admitting is the department I go to for check in on the morning of my surgery. Since my surgery is scheduled for 7:30am, I will get to admitting at 6am and they will make sure I have followed all the guidelines above. They will also check vital signs and blood before sending me to the surgical floor.


ANAESTHESIOLOGY

I met with a member of the anaesthesiology team, but he is not necessarily going to be my anaesthesiologist on the day. We discussed my options, which were basically general anaesthesia and a) epidural or b) PCA ("pain pump," where you administer your own pain medication by clicking a button on your IV line). I chose epidural because I'd rather have a steady flow of medicine from pre-surgery through recovery than having to pump my own medication and get "behind" on the pumping while sleeping, etc.

The epidural is inserted pre-surgery (but post administration of sedation and pain medication such that I am not really conscious of the epidural insertion). After the IV line is put in and I'm on relaxy meds, I will have to lean forward and make my back into a C, like in Pilates. That opens up the spaces between the vertebrae and makes it easier to get the epidural in. They assure me it won't hurt very much at all, but if the actors on Grey's Anatomy are anything to go by, that is a big fat lie.

Once the epidural is in, I will be put completely under with general anaesthetic, my breathing tube and urinary catheter will be inserted and the games begin.

After the surgery I will come to in the recovery area and will apparently be very thirsty and dry of mouth, due to the breathing tube having let my entire mouth/throat system dry up throughout the surgery. I will also apparently be nauseous (hence the light meal the night before).

The epidural stays in for three days, after which I will be switched to whatever oral cocktail of painkillers works best for me for the remainder of my stay. The hospital has a "pain service," as the anaesthesiologist put it, so my medication can be increased/adjusted 24 hours a day, whenever I need it.


INSURANCE

In pre-op admitting, you sign most of your necessary consent forms so you don't have to do it the day of the surgery. Consent/understanding of risks for anaesthesia and the surgery itself, naming of a proxy in case you can't make decisions on your own (gulp), acceptance of financial obligation if insurance doesn't pay for your surgery.

Insurance itself is, for now, a non-topic. My insurance (Blue Cross) has covered everything so far, and apparently the hospital's insurance department has already begun the process of getting my surgery approved and covered. They'll get in touch if they need me. So no news is good news in this department, I suppose.


BLOOD DONATION

During pre-op admitting, one is usually sent to the phlebotomist for some blood work, but because I was also doing an autologous blood donation yesterday I only had to get stuck once for both pint and vials.

On February 9th I gave my first autologous blood donation at the New York Blood Center in New York. I'd never given blood before because I always feared that my horrible, very bad, no good veins would be even worse if you tried to squeeze a pint of blood out of them. At the New York Blood Center, I was wrong. The guy found a vein somewhere in the marble blankness of my arm, got the line in with minimal pinch, and the blood came out so fast that I felt quite unwell and nearly passed out.

At Children's Hospital blood center, it was a different story. When I got to the blood center, my blood pressure was apparently 80/60, which is pretty low (standard is 120/80), and my nurse was concerned and told me to pound a bottle of water and try again. The next measurement was higher, though, and so the attempts with the needle began. The girl got a line in, but the blood was coming out SO slowly. And she had to keep moving the needle in the vein to restart the blood flow when it waned. Needless to say it was highly uncomfortable. Although the plus side of blood dripping out of me slowly is that I didn't practically pass out from the blood loss like I did in New York.

I have one more autologous donation on March 2nd in New York and then I am done. Hopefully I will get Mr. Expert again; I'll take a little syncope over a needle-wiggling drop-by-drop eternity any day.

When I donate in New York, it is shipped up to Boston. I had to donate at least one of my three pints on location in Boston, because it needed to be separated into platelets and plasma right away for concentrated injections during surgery. Shipped blood apparently cannot be separated in the proper way.

At my first blood donation, my iron was 14.6. In Boston yesterday it was 12.5, even though I'd been taking iron supplements in between the donations. Twelve is a normal reading, so I am not low, I just need to continue with the supplements and the iron-rich food through the next blood donation and up until the surgery.


PHYSICAL THERAPY

I met with the physical therapist who will be working with me during my week in the hospital, and monitoring me during my recovery. She taught me how to walk on crutches, which was not really new considering I was on them for a month just a year and a half ago for the tennis injury. I remember them all too well.

The physical therapist said I should expect to be on crutches for three months after the surgery. I have heard varying reports from other women who have gone through this surgery, so it is clear that the length of time one is on crutches (as well as every other variable in this process) is highly individual and contingent, and so difficult to predict with any useful accuracy.

I was also told I needed a special raised toilet seat, a shower chair and a wheel chair. Honestly, I can't see myself ever using the wheel chair, since my parents' house and environs are not very conducive to wheeling rather than crutching. I am most likely not going to have a CPM (continuous passive motion) machine unless there is work done on my femoral head. I will do a more complete list of "things I need" in another entry.


SURGICAL TEAM

Last but most importantly, I met with the surgical team, which is to say Dr. Millis, Dr. Prashant (who I'd not met before but I assume will be scrubbing in) and Erin Dawicki.

We went over the whole morning-of-surgery procedure that I'd discussed with admitting and anaesthesiology earlier in the day. Dr. Millis explained that depending on how it all looked in there when he opened me up, he might need to fix any tear there might be in my labrum or do some shaping on my femoral head if it is needed to help the (newly aligned) joint fit together properly.

Dr. Millis also discussed my left hip. It seems we are going to have to do the left as soon as possible after the right. I recently had some significant pain in the left hip (only) during a walk, which was unusual because it is usually my right hip that hurts first, most, or at all. And when I was on crutches a year and a half ago, my left leg was my "good" leg and took most of my body weight for a month, resulting in severe pain. I am quite certain that as soon as I start crutching around after my right hip PAO, my left hip is going to start complaining loudly. But we shall cross that bridge when we come to it.

Pre-Op Scheduling

Now that I have a surgery date, I have had to schedule all my pre-operative appointments. Before surgery I need a complete physical with blood panel, kidney function and liver function tests; autologous blood donations (giving my own blood for use during/after my surgery); and pre-operative appointments at the hospital.

The challenge is not only in coordinating schedules, but in planning dates that allow for proper hemoglobin replacement between blood draws and prior to surgery. My first blood donation cannot be earlier than six weeks before the surgery (February 2) and my last donation cannot be later than two weeks before the surgery (March 2). Moreover, one must allow seven to ten days between blood donations to allow the body to replace the missing pint of blood each time.

Two of my blood donations will be in New York at the New York Blood Center, which will ship my blood up to Boston. One of my donations must be on-site in Boston, as they need a very fresh on-site sample to separate into plasma and platelets for concentrated infusions during surgery. A shot of platelets in various areas can boost clotting during a bloody surgery (which any surgery involving bone-sawing necessarily is).

The schedule I have finalized is as follows:

February 3, 2009 -- Complete physical, including blood/liver/kidney levels, just to check everything and know my baselines. I'm getting this from a regular internist here in Manhattan and having the records sent up to Dr. Millis' office.

February 9, 2009 -- First autologous blood donation, at the New York Blood Center. After this appointment I am to ensure my diet has iron-rich foods and am to take iron supplements for five days.

February 19, 2009 -- Pre-operative appointments at Children's Hospital. During this full day in Boston I will meet with Dr. Millis, the anaesthesiology team, and admitting. I will also have my second autologous blood donation while I am there.

March 2, 2009 -- My third autologous donation, at the New York Blood Center, with the blood subsequently shipped up to Boston.

March 16, 2009 -- Surgery date.

Meanwhile, I have a more general goal of getting myself as strong and healthy as possible prior to the surgery. I have read that other women have experienced faster recoveries when they have gone into the surgery strong and fit. I also must try to eat a nutritious, iron-rich diet during this period of blood donations, as well as keep myself generally free of colds and other sickness. If one is sick one cannot donate blood; if one is sick in the days approaching surgery, the surgery will be postponed.

I've arranged my absence with work. I plan to be completely off the grid for two weeks after the surgery: one week in the hospital in Boston and one week sleeping and healing at my parents' house in Connecticut. During the third week (week of April 6), I plan to begin working remotely from Connecticut, although start day and hours per day are going to be contingent on how my recovery is progressing at that point.

I plan to stay in Connecticut for at least five weeks after returning from Boston, so I can have the help and supervision I would not have if I returned alone to my apartment in the city. Manhattan is NOT a friendly place for people on crutches, so ideally I would like to be almost off them before I leave Connecticut. Right now I anticipate physically returning to the office the week of April 27, but again that is contingent on my recovery speed.

Meeting Dr. Millis

Today my mother and I drove up to Boston to meet Dr. Millis and discuss my potential surgery. I say "potential" because it still was not guaranteed that I was an appropriate candidate for the PAO surgery, much less that I would have the renowned Dr. Millis as my surgeon. If Dr. Millis felt I was not a good candidate for a PAO, or if he opted not to take me as a patient, I would have been frustratingly back at square one. So my biggest concern heading into this appointment was getting everything nailed down, and most importantly, getting a surgery date inked into the calendar.

Prior to meeting Dr. Millis, I had to get additional X-ray and MRI imaging at the Children's Hospital's Waltham facility. I must admit that getting procedures done at a children's hospital is really kind of wonderful. For example, there is fun, whimsical decor in the waiting room, including fish tanks! I remember fish tanks in my pediatrician's waiting room when I was six years old. Nothing bad can happen to you in a place with fish tanks, right?

Additionally, the staff at children's hospitals are cheerful, patient and comforting. My X-ray tech was joking around, making sure I was comfortable and breathing, etc. I'm not particularly scared of X-rays but there is something to be said for treating sick and hurting adults like they are frightened children. Maybe all our hospitals should be like children's hospitals.

At the very least hospitals should always have a fun dragonfly mobile above the table when they try to inject contrast medium into you for your MRI. It was at least somewhat soothing to glare at the swaying, cartoonish insects, clenching my teeth as two nurses tried their hands at finding and piercing a vein in my superhero body. Apparently I have such good elasticity in my veins that they flatten out or roll away at the sight of a needle. Elastigirl indeed. Finally after five excruciating tries they got the contrast medium injected and so into the clanging doughnut I went.

After my Innerspace photo shoot at Waltham, we headed over to Boston to meet Dr. Millis at the Children's Hospital's main campus in Boston. While waiting for the doctor, I filled out a couple of questionnaires about my hip pain. It was a bit tough to know how to answer the questions since I wasn't in a lot of pain today. I am not usually in a lot of pain, but mostly that is because I limit my activities so much and stay off my feet if I begin to have any pain. This has especially been the case in the last six months or so, when my pain threshold has dropped such that I have had to carefully mete out my hip usage to keep myself pain-free most of the time.

My mother was concerned I was downplaying my pain but I really was not. I know the threat of severe pain is always there but I try to keep myself out of pain by preventing it rather than treating it once it has started. So for me the real pain is in how limited my physical activity has become in my efforts to avoid aggravating my hips.

That is not to say I have not had severe hip pain in the last couple of months: there are several times I remember being almost unable to walk and gasping in pain when I'd "overdone it". I put that term in quotes because overdoing it in my current state is doing activities that normally would be completely manageable for someone without my hip condition. Things like a tennis match or a long walk of a few miles. A healthy 29-year-old should not be felled by an afternoon at the museum.

I was still filling out the questionnaires when the doctor came in with his associate Dr. Brighton. Dr. Millis is an affable man with an enthusiastic air. He took a conservative approach, initially saying "if we decide this surgery is right for you" and similar flirty statements. Needless to say, this was annoying. I wanted him to say "OK, you need this surgery, and I'm doing it for you. Now let's talk logistics." But I guess he wanted to ease into it. Or maybe most new potential patients are not as decided, determined and dispassionate as I am about this whole thing. I've accepted the diagnosis and the need for the surgeries. Now I just want to get them over with. Right, recover; left, recover; done.

I truly think Dr. Millis had decided I was a good PAO candidate and that he was going to take me as a patient before he entered the room today, maybe even before I got to Boston and had the second set of images taken. I don't think he would have even had me come up to Boston if he hadn't, and I seriously doubt he would have spent so much time with me during the appointment if he was unsure.

The doctor watched me walk in various ways: normal, on tip toe, on my heels. He did some range of motion tests on both hips. I have no gait problems and have very good range of motion in both hips. We looked at the images from Waltham and the images I'd taken in October at HSS. The doctor drew the various angles on the X-rays to show where my socket edge was and where a normal socket edge should be. In the false profile view, it was even clearer that my sockets were far too shallow on both hips.

In the images, there doesn't seem to be that big a difference between my left and right hips, so it is a bit odd that the right usually hurts so much more. When I was off my right leg last summer, on crutches for a right knee injury, my left leg took all the weight and hurt more than it ever had before. So it is clear that my left leg has the same capacity for pain as the right. I guess the right is just quicker to pain because of the chronic labral tear and so I end up getting off my feet before the left hip even starts to hurt.

Dr. Millis confirmed that I am going to have to have the left hip done pretty soon after the right PAO. It will depend on the healing rate for the right hip, but it could be as soon as three months after the first surgery. That is faster than I expected, but honestly, the more I can compress this disability and recovery period, the better it is.

"Can we talk dates?" I asked, finally. Dr. Millis got his scheduling coordinator on the phone and offered me February 9. One month away! That was a bit too soon, even for me; I need to coordinate with work and other commitments. I took the next available slot, which was March 16. So there it is. Right hip PAO in two months. Giddy up!