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.

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!

Bones and Cartilage

The xrays I took in July 2008 (right) show the faulty structure of my hips. Notice how the hip socket does not cup the femoral head on either side of body -- the sockets are shallow and thus all the upward, weight-bearing force of my femur slams right into the very edges of my hip sockets. You can see that the space there is much narrower than the space between the ball and socket in the rest of the joint. That is because I have spent 29 years pounding away at the cushioning of my hip joint in that one spot.

Dr. Su noted that my right hip is worse than my left, and therefore would need surgery before my left hip. One can see from the xray that more of my left femoral head ("ball" of hip) is inside the socket than my right. (In the xray, my right hip is on the left side of the film, as if you were looking at me standing in front of you.)

The next step was to ensure that I had enough cartilage left in my right hip to perform a successful PAO. If I'd worn away too much cartilage, even a PAO wouldn't necessarily keep me from having to have a total hip replacement relatively soon. Damaged cartilage has a limited ability to repair itself, and is very slow to repair. For this reason, humans suffer arthritis from a lifetime of wearing down the cartilage in their joints; if cartilage could quickly and effectively repair itself, arthritis would not be so prevalent. If I didn't have enough left to cushion the joint even after it had been reconstructed into the correct alignment, the PAO would not be an appropriate surgery. It would be too late.

Ideally, a dysplastic (dysplasia-afflicted) patient has a PAO -- reconstructing the natural joint -- rather than a hip replacement -- replacing the natural joint with a prosthetic joint. It is preferable to keep the natural joint since the body has the ability to dynamically maintain the health and function of the natural joint throughout life, whereas a prosthetic joint will wear out like any mechanical device and need to be replaced. A natural human joint generates less friction than even the most perfect ball bearing; in other words, we have never invented an equal substitute for a natural joint. Cartilage has not even been recreated in a lab yet, not via stem cells nor via synthetic materials. A prosthetic hip can only be expected to last 10 to 15 years in someone with my age and activity level, meaning the prosthetic would have to be surgically replaced one or more times over my lifetime. Clearly, one PAO in each hip now is preferable to several hip replacement surgeries for each hip over my lifetime.

On October 17, I had an MRI focusing on my right hip. An MRI is much more effective at showing the soft tissue of the body, and therefore could show the amount and state of my cartilage, as well as the other soft tissues in and around my joint, such as ligaments, tendons and musculature. It is worth reading the description of the MRI linked above -- I never really knew how the technology worked or why the machine had to make all that clunking throughout the procedure.

The MRI experience itself was not terribly scary if you don't mind napping in a farrier's shed. The scan took about an hour, with no physical effects other than an odd tingling from time to time. The lab had special MRI-compatible headphones so I could listen to the music of my choice during the scan. The clunking managed to drown out The Doors from time to time, but having music was better than listening to my thoughts.

On October 21, I went to Dr. Su's office for the MRI results. I was pretty worried that I might not have enough cartilage and would not be able to have the PAO in the right hip, but would instead have to have a replacement. As I discussed above, that was not the preferred option. My anxiety was fueled by the fact that my right hip had been hurting almost constantly since my xray-follow-up appointment earlier in the month -- it certainly didn't feel like there was enough cartilage in there!

Thankfully, there was. Dr. Su said I had a good amount of cartilage, but that it was beginning to "fibrillate," meaning soften and weaken, the early stages of arthritis. This just underscored the need to have the surgery as soon as possible.

My MRI report also explained why I felt so much pain in the front of my hip socket. There is a ring of cartilage called the acetabluar labrum that surrounds the lip of the hip socket, like an o-ring. Its function is to deepen the hip socket, keeping the head of the femur from popping out of the socket. Given my shallow hip sockets, it makes sense that my labrum was being put under intense strain holding my hip joints together.

The MRI report read: "The anterior [front of the body] labrum is chronically torn and degenerated, appearing hyperplastic [enlarged, stretched] and generating ganglion cysts [fluid-filled cysts caused by repetitive wear on the joint] that dissect outside the confines of the fibrocartilage, deep [into] the iliopsoas muscle-tendon junction." This means the cysts are intruding into the muscle-tendon junction of my iliopsoas, a muscle triad that are the strongest of the hip flexor muscles. This is causing "mild insertional iliopsoas tendinosis without tear," meaning degeneration without inflammation but damage to the tendon on a cellular level.

In short: ouch.