Monday, January 26, 2015

Preparing for a Hip Replacement: What They Don’t Tell You

Helping my mother through her hip replacement has come with a rather sharp realization. Among all the information and training they give you – and they do give you a lot — there are a number of things they don’t tell you. Crucial things. Things you need to know to make your recovery from a joint replacement much easier and less stressful. 

To wit:

Have an Advocate. Whether it’s from the aftereffects of the anaesthetic, coping with the post-op pain, or the opioid -induced fog, chances are your brain won’t work very well for the first several days after the surgery. Somehow, the medical staff don’t seem to be aware of this, throwing an intense amount of information at you, while expecting you to make the arrangements surrounding discharge planning and aftercare.

Designate an advocate. This should be someone you trust, who knows you well, and who has no problem being assertive with medical professionals. If you don’t have someone who can do this, get in touch with the social work department of the hospital before your surgery. Some hospitals also have patient advocates who can help you.

Prepare Visitors. You will be glad to see family and friends visiting you in the hospital, but you won’t have enough energy to interact much. They should be prepared to mostly sit by your bedside, chatting briefly and amiably when you wake, and otherwise leave you alone to sleep. Hospitals also aren’t staffed adequately, often relying on family and friends to do non-medical care, such as getting blankets, water, helping to make you comfortable, getting staff when you need them, etc. Try to set up a bit of a schedule that ensures someone is around for the better part of the day until you go home.

Hospital food will suck and you will be off your feed. It’s a good idea for your visitors to bring in light, enticing meals (clear soups, etc.), to help you get a bit of nourishment that isn’t too challenging for your stomach.

Assume Early Discharge. The sooner your advocate starts getting the information they need for when you go home, the better. They should start talking about discharge planning to nurses, physiotherapists, occupational therapists, social workers and the like the day after your surgery. They kick you home quickly these days, partly because the hospital is no place for sick people — you recover better at home. Another reason for the quick turnaround is financial pressure from hospital administrators to move patients through as quickly as possible. If they told you that you will be in hospital for four days, assume it’s going to be three.

Line Up a Companion. Make arrangements to not be alone for at least the first week after discharge. You will likely spend the first week tottering between bed and a chair, gradually spending more time in the chair than in bed. You will not be able to make a cup of tea, get yourself an apple, or lean forward to grab the remote (to prevent dislocation, you’re not allowed to bend your hip past 90° for the first three months). It’s important that there’s someone in the house to be with you when you are on your feet (with a walker). That someone should be comfortable potentially helping you with going to the washroom, putting you to bed, changing your clothes, and other personal tasks. You should also start getting ready to be comfortable with receiving help with all sorts of intimate tasks.

Dealing with Constipation. You will be blocked. The anaesthetic, strong painkillers, and not eating much will combine to making things move very slowly. The hospital may send you home with stool softeners. Also be sure to drink plenty of liquids and make some of that prune juice. Nothing else works like it.

You Know You’re Getting Better When… For the first week or so, you’ll be busy just getting through the days. Then you’ll notice yourself starting to get cranky. Don’t worry. It means you’re getting better. It will be frustrating for weeks, but minding about being uncomfortable and not being able to care for yourself is a sign that you have regained enough strength to want to be independent. Hang in there. And remember that one of the great things about surgery is that you will get a little bit better every day.

Do you have any little-known tips for recovering after joint replacement?

Tuesday, January 20, 2015

Becoming Bionic

When I was 16, I had both my hips replaced. When I talk about it, I usually focus on the way they liberated me from more than two years of lying in a hospital bed.

They enabled me to sit in a power wheelchair and to go home. I don’t talk about the six months from the first replacement to the day I went home or much about the two years before that.

I’ve been revisiting that time in the past week, prompted by my mother’s hip replacement last week. She’s doing remarkably well, considering the circumstances, and will likely come home today.
It’s been an odd week. Superimposed on my mother’s experiences has been memories of my own.

Juvenile arthritis is the obvious culprit for triggering the need for my hip replacements, but accelerating that need was a body cast they put me in when I was 14. The rationale for the body cast was that giving my hips some rest from the flare might make everything better. After a two week reprieve to go on vacation, I spent a month in a cast from the tip of my toes to my chest. At the end of the month, they took a saw to the cast and I felt the air brush against my skin again. I got tipped out of the cast and then I stood and everyone — myself, my family, the medical team — expected me to walk.

Only I didn’t. Couldn’t. My mother talked about it in the first Live Bold multimedia story. In it, she says “and when she got out and got down on the floor, and found out she couldn’t walk, I saw her eyes, I saw her face. Defeat, sadness. She didn’t cry. She just gave up on it, it wasn’t going to happen.”

I don’t remember that moment. I suspect my brain has very carefully wrapped it up in a box with a sturdy lock and put it on a shelf.

I remember afterwards, though. I was transferred from the rehab hospital to an orthopedic hospital to get hip replacements. It was the best thing that had happened to me in a long time. The rehab hospital was an awful place, but the orthopedic ward was quite wonderful. It was led by an amazing head nurse who put caring first. Not just the physical caretaking of the children on the ward, but an understanding that children who are in hospital need something extra. They need nice people, they need to laugh, and they need to have a sense of home away from home. They did that well. Also, the food was pretty good.

As my fused hips didn’t allow me to sit, I spent most of my time lying in bed while I waited for new hips. I was pretty tiny, so the hip replacements needed to be specially made for me in the UK (Denmark is a small country and relied on joint replacements from other countries). A quick-thinking nurses’ aide reported my nickel allergy, which meant my new hip replacements would be some of the first made purely of titanium. This added to the wait time. And then, after two years of waiting, on a beautiful summer day in July, they told me that they were here and we were ready to go. My left hip was first.

The first three days weren’t very fun. This was before pain pumps that allow you to control the pain meds. I’d get a shot of something wonderful for the pain every four hours, but it only lasted three. That last hour was about holding on, breathing through the pain and the tears, until they came with the next shot of wonderful. The third day after surgery was the worst, something I’ve always attributed to the anaesthetic finally leaving your body so you get the full and exquisite sensation of pain for being cut open. And then it gets better. Much better. The lack of pain in the joint that previously was screaming is something I still remember and still enjoy to this day.

Well, my hip got better, but my knee was a wreck. It didn’t respond very well to the twisting motion made when they dislocate your hip so they can saw off the top of your femur. It never simmered down, so by September, they decided to do a synovectomy, believing it would help. It did, but not in the way that was expected. Just like my hips had after the body cast - and my right wrist did after synovectomy when I was 10 - the knee fused. Aside from the leg sticking out and making my dimensions bigger, I don’t mind much. It being fused means no pain, so it’s been my strong legs since.

In early December, it was time for the second hip and it went much like the first. Except this time, when my knee was just as unhappy as the left had been, they did a steroid injection in the joint and that took care of the problem.

Other than the method of pain control, there are a couple of other differences between then and now. Back then, you stayed in bed after the surgery, most likely until the stitches came out. These days, they get you out of bed the day after the operation and if you don’t need to go to rehab, home on the third or fourth. Another difference is the incision. Thirty years ago, it was long. Really long. Mine starts almost at the very edge of my butt cheek, moves out towards my side and makes a graceful 90°-ish curve down on my outer thigh. The scar covers 33 stitches worth of territory and I have a matching one on the other side. These days, the incision is just on the side of your leg. That’s definite progress (although a less impressive scar).

These thirty-five years later, I am still grateful for my bionic hips. And I still prefer to not think about those six months in 1978 with the three surgeries.

Wednesday, January 14, 2015

Live Bold Live Now Update

Almost exactly a year ago, HealthCentral released a series of immersive multimedia stories, featuring people living with different conditions. The rheumatoid arthritis story "starred" me.

This week, I'm proud to present the update to the Live Bold Live Now story, featuring myself and my buddy Brad Carlson talking about how we've created a life with RA. 

The last year has seen many changes for me, chief among them discovering that I keep getting better at  a level I never imagined would happen, having the ability to travel farther than I have in the last 10 years. Another wonderful addition to my life is working with Show Us Your Hands! and the exciting new direction we've launched earlier this week.

To watch the update, hop on over to the Live Bold Live Now RA page on HealthCentral. I'm really pleased with it and hope you'll like it, too.


Monday, January 12, 2015

Show Us Your Hands!: New Year, New Site, New Book!

Last week, I mentioned having been immersed in Something Special as a reason for having been rather absent lately. Today, I am proud and very excited to share that Something Special with you: the new website and photo book for Show Us Your Hands!:

"To celebrate our third anniversary, Show Us Your Hands! is proud to present our new website at and the new, revised edition of the Our Hands Can photo book, now available on Amazon. These represent a new direction for the organization, one that respects our history while branching out onto an exciting path to unite the inflammatory arthritis community and raise awareness about these serious diseases."

You can read more about our new path, check out the beautiful brand-new Show Us Your Hands! website.

Wednesday, January 07, 2015

On Decades, Miracles and Living the Dream

Image credit: dvarg

Today is the 10th anniversary of my first injection of a biologic. At 3:35 PM, to be exact.

Today is the 10th anniversary of me getting a second chance, of being given the gift of getting back my life.

Ten years ago, I thought I’d celebrated my last Christmas. I had nothing left — a severe RA flare had eaten everything: my strength, my ability, my social life, my energy, my hope. I felt burned to the ground, a pile of rubble and ashes.

On January 7, 2005, the funding came through and I got my first shot of a biologic. I went home, took a nap, and woke up a different person. I still remember that feeling, although it is hard to describe. I remember waking up, knowing that the medication was working. Feeling somehow different, as if a few drops of energy had begun to trickle back in. As if the swelling and pain were infinitesimally reduced.

It continued and gradually, I rose out of the ashes. What was not gradual, however, was my embrace of this new life. That was instantaneous and filled with joy. A joy that has never gone away, sparkling around the edges of every day of the past 10 years.

In 2011, I interviewed Christine Schwab. She had just celebrated her own 10th anniversary and I remember marvelling at this. Of hardly daring to imagine that the meds could work for that long. Although I had made my own five-year plan a year before this conversation, imagining an entire decade of medication working was the stuff of dreams.

Looking back on the last 10 years, I am awed by what this gift has brought me. I’ve become a Moster (aunt) to my smart, beautiful, and energetic niece and nephew, the Tinks. I have been given the privilege of helping my mother after her accident, as she helped me for so many years (and the joy of watching reality shows with her). I met the love of my life, a man who in every way is perfect for me. I wrote a book (well, two), fulfilling a lifelong dream, and found a job that I love. And then several more jobs, advocating about disability and health, roles that I love just as much and where I get to make a difference. I said goodbye to one cat and hello to another. I’ve enjoyed several digital cameras with which I photograph this beautiful world of ours.

I got to be here, every day. I’ve been here in all the little moments that make a life even more so than the big events. I’ve gone grocery shopping, done my banking, had debates about ideas, read good books, discovered texting and manicures, rediscovered coconut macaroons, made new friends, said goodbye to loved ones, became obsessed with Sugar Beach, and found my tribe online.

I don’t remember ever being bored in those 10 years.

There are times where it all feels like a dream and in many ways, it is. A dream made real. Everything I ever wanted my life to be, what it wasn’t for most of my life, and what it is now. Living full-throttle, despite never once engaging in an extreme sport. Waking up every morning, at some level grateful to be here, aware of how much of a gift it is.

And every time I get my shot of a biologic, I still send out a silent thank you. To the researchers who created these drugs. To the pharmaceutical companies who make them. To the taxpayers of Ontario who make it possible for me to get it and therefore create this gorgeous life of mine.

This is what real fairytales look like.

Thank you for being with me on the ride. I can’t wait to see where we go next!