Making the Right Decision - A Hip Replacement

By Kathy Savickas, November 2006

When I moved to Michigan almost 10 years ago I was in a flare, subglottal stenosis was rearing its dragonhead and I was on Cytoxan for the third time and prednisone. Five years later I still had the roving joint pain and had also started having tremendous pain in my left hip. I figured it was just part of the Wegener’s (WG) pain and did not pay much attention to it until I read an article about prednisone on the Internet. It stated that if you develop hip pain during steroid use then get it checked out because you may be facing avascular necrosis (AVN).

I called my primary care physician (PCP) and he ordered x-rays. Sure enough, I had AVN in both hips. It was about this time that I decided I needed to make a change in my health care. My roving pain was getting worse and I was living the life of “work and sleep” - nothing else. My doctors at home just did not know enough about WG to treat me. I searched the Internet and read about the Cleveland Clinic Foundation and my PCP contacted Dr. Gary Hoffman. I met with Dr. Hoffman three weeks later and he ordered scans taken of my hips. He confirmed the AVN diagnosis. Here comes the hard part - Dr. Hoffman told me it was up to me to decide when I wanted to have the surgery. I wanted someone to tell me I had to have it done; deciding to undergo surgery one more time was not a decision I wanted to have to make.

Over the next two years I lived with the pain but in February of this year I finally made the decision to have the surgery. Once I decided to proceed with the surgery I felt a sense of relief I cannot describe. Once I had the courage to make the decision, I had the courage to face the surgery. One simply followed the other quite naturally.

The deciding factor in having the surgery was the pain. I was tired of spending most of my days in bed eating Percocet after Percocet and barely getting any relief at all. Finally, one day I just decided I had had enough. I did not want to live like that anymore. Although I have always loved spending time in bed reading, napping and watching TV when I have the time, I was now spending all my time in bed because I couldn’t move - the pain was so bad I couldn’t concentrate to read, do stained glass or enjoy camping with my husband.

I felt the most important thing to prepare myself for my hip replacement would be to visit all my doctors and get an OK from them to proceed with the surgery. This meant seeing my ENT, Dr. Robert Lorenz, for the status of my subglottal stenosis and Dr. Martin Citardi, my sinus specialist, who keeps an eye on an opaque area in one of the sinuses above my eye. I also made an appointment with an ophthalmologist, as I had not seen one in over ten years. I had my yearly gynecological exam and a check-up with my dentist to make sure my teeth and gums were healthy. I also saw my primary care physician because he would be my physician at home after the surgery and would need to coordinate with the doctors at the Cleveland Clinic should the need arise.

I spent a tremendous amount of time on the Internet researching hip replacements. The Cleveland Clinic, Mayo Clinic and The Johns Hopkins websites all have extensive information on hip replacements. One site I found particularly helpful described in detail the steps through the day of surgery - and what to expect when you wake up - telling me where there would be tubes sticking out, how my pain would be controlled, what would happen each step of the way before and after surgery. I was glad to know what to expect when I woke up - there were no surprises and that was the best part of reading up on what was involved with the surgery.

The day of surgery went smoothly; the entire procedure only took an hour. My pain was always under control. To help control infection, the surgeon did not insert a catheter although everything I read said to expect one. So, for the day of surgery I had to use a bedpan. I also left the hospital a day early, surgery was on Wednesday and I went to rehab very early Saturday morning as my wound was seeping and they wanted me out of the hospital and away from infection.

The Cleveland Clinic alerts all patients to things they can do to prevent infection. Most emphasized was that your caregiver, be it a nurse, an aide or your spouse, should wash their hands before they touch you. I knew I would not be able to get out of bed by myself for awhile once in rehab, so I made a point to bring a bottle of hand sanitizer to keep by my bed and used it several times a day - on my hands, my table top, my phone, etc.

The day after surgery I was wheeled over to the physical therapy (PT) room for my first session. I stood up and it actually felt good. Best of all, Dr. Hoffman came to visit me and when he didn’t find me in bed, he followed my trail all the way to the physical therapy room. It was so good to see a friendly and familiar face! I did a few exercises - the scariest part was thinking that I would faint or not be able to accomplish much in rehab but I surprised myself and always felt better after a PT session.

When I left the rehab facility in Cleveland, a local hospital in the Detroit area called me to set up physical therapy at home for two weeks. My physical therapist came three times a week and followed through with the exercises I had started at the Cleveland Clinic. The rest is up to me to finish on my own over the course of the year.

Family and friends can help by asking if there is something they can pick up for the patient at the pharmacy - I always needed something. Offer to bring over dinner but do not stay to eat and keep all visits short. Keep hospital visits short too - I LOVED my visitors but got so tired after about 30 minutes I could barely keep my eyes open. Offer to clean the bathrooms or run the vacuum. My husband was great and kept the household going but a little help with cleaning would‘ve been great.

My AVN was a direct result of long-term use of steroids. Collectively, I have spent more than half of the past 22 years on prednisone - most of that time on high doses (over 20 mg). I have been on Fosamax and Vitamin D for just over a year and had a bone density test done a couple of months ago which showed an increase in mass. (A bone density test measures the mineral content of your bones and my tests always focus on the lumbar region of my spine and my hips. I have one done every year.)

I was never told exactly how long to expect my hip to last as each case is different depending on your level of activity. However, I do have a ceramic hip with a titanium shaft and chances are it will last 15 or more years. This is what I can tell you now - I have NO pain in my hip. I move better than I have in six years. Good thing as I have a new puppy to train and it takes a lot of quick moving.

This story would not be complete without complimenting ALL the people at the Cleveland Clinic, especially my surgeon, Dr. Peter Brooks.  I have no qualms about returning to have the other hip done as soon as the pup grows up.

Editor’s Note: When I met Kathy in 2005 she spent most days in bed, controlling the pain with medication.  She couldn’t travel or enjoy her hobby of creating stained glass art.  Now, only months after surgery, she volunteered at the Symposium and donated two new pieces of stained glass for the silent auction. Kathy also adopted a 2-month old puppy, Mr. Spoons, which she never would have been able to do before the surgery. When I pointed this out to her she said, “I’m 95% back to being normal. I feel great!”