Cabin Fever

I was hoping to get back to the office today after one week off and one week of working from home, but this weekend I came down with the dreaded Summer Cold. I thought it was allergies until the moment when I was at Whole Foods with Trusty Sidekick Danielle and felt like I'd been hit over the head with a sledgehammer. Although I do complain about working in a cube, I terribly miss my friends at work and the general routine. Also, I can't wait to get back to the gym... I'm waiting for my wound to heal up before getting in the pool which is frustrating too, since swimming would make me feel better.

The good news is I finally got around to working on some tables today that I had been trying to get to for a while, so I did accomplish something!

The Long Set of Stairs Home

So I'm almost home, have been staying with a friend for a few days and am glad to be back intown closer to friends (although I miss my family, especially those nieces). Tomorrow I'll be heading home. I'm excited about being there but I'm nervous about the climb up the stairs to the third floor. Thank goodness there are landings halfway up. I'm also a little worried that everyone will think I'm fine now that I'm home again, and I'll be stuck with a lot of smelly garbage to take out!! Carrying stuff with crutches is way harder than it should be.

The good news is my arms are getting pretty buff from using the crutches all the time. I've been showing off my guns to everybody that I've seen...

The Other Hip

So now I just have to wait and hope that the CD worked for the right hip. That means I have time to start thinking about the left hip. I've seen a few doctors so far about this hip, and they all say that it's too far gone for anything but a total hip replacement (THR). There is a new surgery that has only been approved by the FDA for about eight years, but that's been around for longer in Europe, called hip resurfacing. Resurfacing essentially accomplishes the same task as replacement--putting in fake parts to replace the original worn-out ones-but it leaves more of the original parts in. Basically they just take the worn-out top of the bone off and put a metal cap on it, and then put in a metal piece on the other side too. There's a general rule that people can have two THR's in a lifetime, but a resurfacing still leaves enough bone for two THRs. In other words--if I get a THR now and it wears out in 20 years, I'll have my second (probably last) hip replacement at about age 57. If I get the resurfacing now and it wears out in 20 years, I'll still have two THRs left at the same age--making it more likely that I'll be able to remain active into old age.

I think if I decide to choose the resurfacing, I'll go back to Dr. Mont in Baltimore, as he has plenty of experience with these. The doctor here said a few negative things about resurfacing--that it's riskier, that the operation and recovery are longer and harder, etc. According to Dr. Mont, the risk of complications is small, and if they have a problem they can easily convert it to a THR, and the recovery is the same. Patients generally have a better range of motion and less limp with resurfacing than with a THR.

Negatives are that we'd have to go up to Baltimore again, and there are increased metal ions in the blood. This may have negative outcomes for future childbirth-only a few babies have been born to women with resurfaced hips so evidence is lacking. None of the babies born so far have had problems, although I think there have only been nine or so.

Let me know if you have any opinions-I like to think about all sides of a decision before I make up my mind.

Transportation alternatives

Fortunately my hip pain has decreased so much since Monday, I feel like I'm pretty much back to where I was before I had the surgery. I'm sure that using the crutches and keeping the weight off helps. I have to use the crutches for at least 3 more weeks, and after that can go off them only with the doctor's approval. I had been using one anyway from time to time to help with the pain. However, using two crutches is difficult--since I'm using my hands to get around, I can't carry anything. It's also tiring.

Since my surgery I've been using wheelchairs to get around inside stores when they have them available, so I can use my hands to carry stuff and so I don't get too worn out. I also love to do things that normally require a lot of walking, like going to art festivals, museums, on walks etc. Mom and I decided that a wheelchair might come in handy for me for things like this, that I haven't been able to do otherwise and especially can't do right now (not to mention after I have the eventual hip replacement surgery).

We ordered one on the internet and it should be here Tuesday. I'm excited about it because I think I'll be able to have the freedom to do some things pain-free that I haven't done in a while. On the other hand, I don't want to become dependent on it and get weak leg muscles, so I'm planning on only using it for outings that require a lot of walking--which I would otherwise avoid. Also, I don't like running into people that don't know about my situation when I'm in one. Crutches make people think "temporary injury", while a wheelchair says "permanent disability". Even though that isn't the case for me, it makes people sad to see me in one and I don't want to make people sad!! So please--if you see me in a wheelchair-- I'm not worse, just giving myself the freedom to do something I would have probably otherwise have avoided (or at least would have otherwise been in a fair amount of pain while doing it).

Recovery blues

I feel like I shouldn't complain because I'm doing so well with the surgery. I'm not really in a lot of pain or anything. I'm not even sure I have stitches--the surgical area is very small.

But--I have to be on crutches for at least four weeks, and that means putting most of the weight on the bad left hip. And, that means at least four weeks of having to use my arms and hands to help me get around, instead of to carry things. I'm sure I'll figure out solutions but in the meantime, carrying a glass of water, cup of coffee, or book from one room to another seems like a major ordeal.

And, I have to wear these white knee-high anti-embolism socks to prevent blood clots--for two weeks--in 100+ degree weather. I'm trying to figure out how to make them fashionable, but since my current wardrobe is basically limited to elastic-waistband pants, I'm not having much luck yet. They are also tight and uncomfortable to sleep in.

Anyway, thanks for listening to me gripe. Everything is really fine, just slightly annoying.

Foamhenge

We left pretty early in the morning and headed for home. I had to get out every hour in order to stretch my legs a little. Besides the rest stops, another point of interest along the way was Foamhenge, a life-size styrofoam replica of Stonehenge. It was up a hill and not very accessible on crutches, so thank goodness for this virtual tour. Foamhenge is in Natural Bridge, Virginia, named after the Natural Bridge. We stopped at this tourist attraction and although we didn't get to see the actual Natural Bridge, we did see a statue out front of a cowboy riding a dinosaur.

We were planning on going all the way home but by evening I was really exhausted. We stopped and spent the night in Gaffney, SC, home of The Peachoid. Today we made it the rest of the way to my parents' house. So far everything is okay; I'm still tired but I made it to the drugstore and the grocery store. I used the store wheelchairs which gave me a chance to get off of both hips. Besides, with crutches in both hands, I can't pick anything up--but with the chair I was able to help out.

Oh, I forgot to mention one minor mishap that happened along the way. I dropped my cell phone in a glass of water and now it's not working. If you call my regular number, the message will give you my parents' number...

So Far, So Good

We got to the hospital at eight this morning, did paperwork and waited. They started prepping me for surgery around 10 or so. Dr. Mont came by and visited with me. He seemed busy but he made time to sit and chat with me and answer some questions I had. The nurses, anesthesiologists, and everyone else I came in contact with were very nice. Dr. Mont said the actual drilling portion of the surgery only took a few minutes. We won't know for sure if the surgery is a success for 10 months to a year. Chances are good that if I don't have pain in a year, that hip won't give me any more trouble.

We got back to the hotel this afternoon and have just been relaxing. I feel okay but just sore and stiff. The hotel had a wheelchair for us to borrow, so we went on a short tour of some shops next door. I even felt well enough to go to dinner on crutches, but I was ready to leave by the time the check came! I can definitely tell when the drugs are wearing off, ouch. I'm a little nervous about going around on crutches using the left leg (the original bad side) while I let the right side heel.

Tomorrow AM we are heading south. I'm supposed to get up and move around every hour, so we'll have to make a lot of stops. I guess by the time we get back I'll be a rest-stop connoisseur.

We are here

We finally arrived in Baltimore just before 10 PM. Got to the hotel and went straight to bed! I was more excited than nervous until I just woke up at 4:20.

No real news yet but I do want to just say that my family, friends and co-workers have been amazing sources of comfort and support to me. Your kind words and deeds have helped me more than you know. Thank you.

The most expensive CD I'll ever buy...

I'm talking about my upcoming surgery, called a core decompression. Early stages of osteonecrosis (ON) are often treated with core decompression (CD) to try and stop progression of the disease. CD is an outpatient procedure in which holes are drilled into the femoral head. This relieves some pressure and improves the blood supply to the bone. Reported success rates vary from 50%-80%; Dr. Mont, who is doing mine, says he has an 80% success rate. Once the degenerative process has begun, the sooner CD is performed the better the chances are of saving the hip. This is why Dr. Mont was so insistent that I have a CD as soon as possible. Younger and healthier patients also have better success rates.

I've heard varying reports on the recovery process from a CD. I just keep thinking--even if it's an outpatient procedure, they're drilling holes in my bone!! Dr. Mont says it's no big deal, 4-6 weeks of limited weight bearing (crutches and then later, a cane). The papers he sent me don't give a lot of specific information, so I think recovery varies from person to person depending on the healing process. They do say I won't be able to drive for 2-5 weeks. Also, I live on the third floor and there's no elevator, so I'll have to make it up and down the stairs on my crutches.

I'm lucky to have a fairly large support network so even if I'm essentially housebound I should have visitors to help me out with the essentials. I can stay with family and friends, but everyone I can stay with is either allergic to cats or has dogs, so I can't bring my kitties. I can have people check on them but they are so social I don't want to leave them at home alone for too long. Besides, don't you just want to be at home sometimes?

So what's your problem anyway?

Good question. As I said in The Back Story, I have Avascular Necrosis (AVN), otherwise known as Osteonecrosis (ON). I think ON is the more modern term, although you hear AVN a lot too. Avascular=without blood, necrosis=death. So, in other words, the bone is dying because it's not getting enough blood. Osteo=bone, so osteonecrosis means bone death. Two names, one disease.

There are lots of risk factors for ON. An injury can interfere with the blood supply to a bone, which can develop into ON. Sickle cell disease and other blood coagulation disorders can make it hard for the blood adequately supply the bone. Many times ON patients have other serious problems like cancer, HIV, or lupus and the ON may be due to steriods, radiation or other treatments. In my case, I'm not sure why I have it. I took some steroids for allergies, but not the massive doses that most ON patients take. Heavy alcohol use can also cause ON, but I am (or was) a social drinker and not an abuser. Scuba diving is also related to ON. In my case, based on the timing, I think it was primarily the steroids and perhaps some sort of predisposition to it for some reason.

ON is most common in the hips. Most people who have it get it in both hips, unless it was due to an injury. The femoral head--the top of the femur bone in the leg which sits inside the hip-- doesn't have a great blood supply on a good day, so it's at particular risk. So if you hear me complaining "my hip hurts" and then "my leg hurts", it's not something new, it's the same thing. Sometimes the pain radiates down to just above my knee.

Speaking of pain--it sucks. I have heard that ON pain is as bad as bone cancer pain. Thankfully I haven't had bone cancer, so I wouldn't know. However, I have had a kidney stone, and the kidney stone was worse. Having said that, ON is no... well I want to say it's no walk in the park, but that's just sad because I really can't go for a walk in the park! I guess the best way to explain the pain is a general dull ache that makes it uncomfortable to sit, lie down, or exist in any position, which is made worse by standing up or walking. Oh yes--and then there are the occasional sharp, shooting pains when I almost trip over the cat or turn the wrong way. Before I knew what was wrong I was walking a lot more and some days could hardly get out of bed. I think the pain is still just as bad, but I'm walking less and taking pain meds, so there is probably less inflammation, and I don't feel as stiff as back when I was walking lots.

Chapter 1-The Back Story

So here is the story.

About a year and a half ago, around April 2006, I started feeling some aches in my left hip. I was pretty healthy and was relatively active; I'd take the stairs instead of the elevator and walk rather than drive, if it wasn't too far or too hot. I thought the hip pain was probably related to some minor back problems, and that things were just out of balance. When the aches continued, I went to see my chiropractor who took x-rays and thought I had bursitis.

I finished my thesis in August and started an exciting new fellowship at CDC in September. I had wanted to work at CDC for a while, and these days the best way to get in is through a fellowship. For these reasons I decided to take the job, even though it meant a pay cut from my previous career as a flight attendant and purchasing individual health insurance. Fellows working at CDC, the nation's public health agency, have to purchase their own health insurance, and they don't have access to the federal plans.

Back in September when I started working, my hip felt okay. My friend Oscar (not his real name) at work says he noticed I had an "antalgic gait", but other people just asked why I was limping.

My hip pain seemed to be getting worse. I was tired of people asking about my limp, and a new chiropractor and acupuncture weren't helping. Finally I went to see an orthopedist who took an x-ray. He took one look at it and said "You have avascular necrosis" (also called osteonecrosis). He explained that the blood flow to the top of the femur bone (the femoral head) had been compromised, and that the part of the bone inside the hip was dying, and that there was no cure for this condition except a total hip replacement. He also told me about two other surgeries, a core decompression and a bone graft. Core decompression consists of drilling holes into the joint, increasing the blood flow. Bone grafts involve taking a piece of vascularized bone from the lower leg and inserting it into the hip joint. The doctor recommended I get a second opinion.

At this point I was totally opposed to the idea of surgery, because a bit of pain and a limp just didn't seem like enough to replace the whole entire hip. I started asking around for referrals and several people recommended the same person, Dr. Roberson. Dr. Roberson told me about hip replacements, and told me there wasn't much else that could be done for the left hip. He told me, as the first doctor had, that he thought I probably had avascular necrosis in the right hip too, but that it just wasn't showing up yet on the x-ray. My right hip had started hurting, but I was hoping it was due to favoring it while trying to stay off of the left one. Dr. Roberson did say there was a technique that could potentially save the right hip, but that if it was already hurting it was probably too late. He also recommended not doing anything for the left hip until it got so bad that I wasn't able to sleep, although he said he'd replace it now because my quality of life was already suffering.

I got an MRI and sent my x-rays and the MRI DVD to Dr. Mont, in Baltimore, who is an expert in osteonecrosis (hereforth referred to as ON). Dr. Mont will provide phone consultations to ON patients, since many physicians don't have a lot of experience with this disease. He called last Sunday--from home--and told me that the left hip would have to be replaced, but that the right hip could potentially be saved with a core decompression (CD). However, there is already a fair amount of damage and he felt that this surgery should be performed as soon as possible--as in, within a week! I had already scheduled an appointment with another surgeon to discuss the right hip but I couldn't even see him until mid-September, so I was sort of panicky about how to get this done quickly. I told this to Dr. Mont and he said "well, I'll do it", but that just seemed overwhelming--how to get the insurance approvals, how to get to Baltimore, does he really have room in his schedule, etc...

First thing Monday morning, as soon as I got to work, my phone rang. It was Dr. Mont's secretary telling me that I had an appointment for a CD on August 13, in one week! So I'm busy getting ready, trying to think of things that need to be done. Mom and Dad and I are driving up Sunday as soon as I wake up, and starting to head back Tuesday assuming I feel well enough. Wish me luck!