Information on Rheumatoid Arthritis

Ongoing Updates

I decided to create a separate page for my updates, since the other combined pages were getting so long. I hope these updates are of interest to some people ... since my right knee is going on seven years old, and my left knee is nearly six, I hope I can give some reassurance to people who are worried about how long their implants will last. Click here to go straight to the very latest update.

Update: March 27, 1999. I don't have a lot to report today. Just great news. Everything is going swimmingly. My knee feels wonderful, and it's just a little more than three weeks since my surgery. I am walking virtually without a limp and with very little soreness. I am doing outpatient PT twice a week, so the knee is a little sore -- especially the day after each session. But I am comfortable enough to be weaning off my narcotic painkiller. (I have been taking it now for quite a while, so I am on a schedule with my pain management doctor to slowly decrease my dose until I'm off of it.)

My goal right now is to get to the point of being able to go up and down stairs "like a normal person." This means one foot per stair, not the shuffling "each stair takes two steps" method. :-) I'm very optimistic I will be able to do this, because my left knee is getting stronger by the day!

Update: April 18, 1999. I am feeling better this weekend after a little bit of a setback. About two weeks ago, I went through a "down" period both physically and mentally. I've been told by many people that this is normal after major surgery like a TKR. Luckily, the crisis passed. I'm feeling better this week about everything. My knee is still doing really well. The swelling continues to go down little by little, so that by now, it almost looks like a "normal" knee. I can certainly walk normally now. I am walking with my roommate every night when she walks her dog -- a good 20 minutes of exercise after nearly two years of doing nothing at all. It feels good. I have also reached my personal goal of being able to climb stairs "like a normal person" -- i.e., one foot for each stair, rather than the two-foot-per-stair shuffle I've been doing for about four years now. :-)

Update: June 13, 1999. I'm happy to report that my knees are still doing great. The newer one really does feel "normal." The swelling is gone, there is no pain, and the scar is already starting to fade slightly. One thing I've been able to do that I couldn't for a long time is deep knee bends or squats -- like last night, I played mini-golf with some friends, and it was easy to bend low down to retrieve my ball from the cups. It was great!

I do have some swelling in my ankles and feet. I think part of it might be due to my knees feeling so much better. I'm afraid I might have overdone it on my ankles. But I'm still very happy with the results of my operation, and I am really enjoying the Delphi message board. Please visit sometime at the On Our Feet forum.

Update: November 25, 1999. Happy Thanksgiving to those of you in the U.S.! I guess it's kind of strange to be working on my web page on a holiday, but on the other hand, it occurs to me that I have a lot to be thankful for. My "bionic knees" are still doing great and going strong, with no complications. That is the good news. My first TKR was done in June of 1998, so it's 18 months old and is just great. My knees are truly pain-free.

Update: February 23, 2000. It's been a while since I've updated my page, as I've been through a lot since November 25. Briefly, I developed a stress fracture in my upper left femur, and have had surgery on it twice this fall to try to pin and stabilize it. The recuperation process for this injury is actually taking longer than my knees did. The one, or should I say two, bright spots right now are my knees, which continue to feel great -- strong and sturdy and pain-free. Even the scars are starting to fade.

Update: August 1, 2000. Once again it has been a very long time between updates, because a lot has happened since February. I'm still having some issues with the left femur and with another injury to my right elbow. I debated whether to tell the whole story or not, and decided just to update you on my knees, which are still great. I'm so happy with them and wish that I could have all my joints replaced! I went to the mall this weekend, for example, with my roommate, and after several hours of shopping my feet were swollen and throbbing but my knees were still going strong!

Update: January 27, 2001. Greetings to all from Baton Rouge, Louisiana! I have decided to move back to my hometown after living in Austin for almost 14 years. I've moved back in part to be closer to my family, who can lend some support while I am dealing with the problems mentioned above. I had surgery on my femur again in December 2000, and am battling a staph infection in my right elbow that has been going on for about nine months. In general, my knees are still doing fine. I have some swelling and a little pain on occasion in the left knee, but doctors tell me that that's pretty much normal for someone with RA -- there is still a little synovial tissue in there that can get swollen, and as long as it's pretty minor, I shouldn't worry about it too much. Overall I feel pretty well and am looking for a job and an apartment here in town.

Update: June 29, 2001. Well, a lot can happen in six months! I'll give you the good news first ... for one thing, my knees are still doing great. They held up fine during my whole move from Texas and everything. I did find an apartment and got successfully moved in, but I haven't found a permanent job yet. I am trying to keep up my positive attitude, though, and there are some good things happening. I am sending out lots of resumes and hoping for the best. And, while looking for a job, I'm using my free time to exercise and improve my health.

Update: July 19, 2001. In such a short time, things have really turned around for me. Physically, I am feeling really well, thanks to a new exercise regimen. The slight swellings in my knees that I had mentioned awhile back are gone. I'm still looking for a full-time job, but in the meantime I am doing some freelance writing and consulting work that keeps me busy. I am so hopeful now that an employer will see past the creaky joints and realize how much I have to offer them.

Something slightly interesting happened this week that I thought I'd mention. My grandmother was in the hospital, and one day I was walking through the hospital corridors on my way to see her, when I happened to run into a man (a stranger) who noticed the scars on my knees. They are not very noticeable anymore, so I knew he must have some experience in the subject. He asked me how I was doing. I filled him in a bit, and he told me his story. His surgery had been three months ago, and he said he was still having some pain -- but to me, he seemed to be getting around fine. He wasn't using so much as a cane. He was about 55, I would say, and looked fit with just a slight paunch. I guess my point is that you shouldn't lose heart if you are still having a little trouble after a couple of months. It takes some people a little longer to heal than others, and you will feel better if you persevere!

Update: Sept. 15, 2001. I just wanted to let visitors to this site know the good news. I found a great job and started Aug. 28. Believe it or not, the job is with the local office of the Arthritis Foundation! It just seems like it was meant to be. My coworkers have been great about the slight accommodations I need, and I'm really feeling good about it. My knees continue to be great and I marvel every day about the fact that I walk around like a "normal" person.

Update: August 10, 2002. I think this is the longest time I've let go by between updates ... but as they say, in this case no news is good news. Although I've been very busy since starting my new job almost one year ago, it has mostly been the good kind of busy. I've been fulfilled and happy. I love working for the Arthritis Foundation. My boss is incredibly supportive and understanding. I don't think that my arthritis has affected my work much at all; I have only taken a couple of days of sick leave, and I don't need many accommodations in the office. My coworkers are also very supportive when I do need a little help. In fact, just last week, several of us travelled to Tucson, Arizona, for the foundation's annual staff development conference. I had a great trip and met a lot of really wonderful people.

My knees have continued to perform well during all this time. I still have almost no pain or problems with them at all. I have only the occasionally slight soreness when I over-exert myself. I fell in the parking lot outside my office about a month ago, and landed partly on my right knee, and when I saw my orthopedist next I insisted he X-ray it. :-) It was fine.

For those of you who have been following my story, I do have to say I'm still having some difficulties with the left femur and the right elbow. The leg seems to be just generally "gimpy" -- the bone is supposedly healed now, but my left leg is six centimeters shorter than my right, and even with a special shoe I have quite a limp. I get along okay, though, and sometimes use a cane for stability. The staph infection in my right elbow was pronounced cured in August 2001, then recurred in January 2002, which is not uncommon. So I'm working with that again, taking antibiotics and such.

You can see that there are at least two major categories of people who have knee replacements: people who have "only" knee problems, such as those who injured a knee playing sports or who have osteoarthritis in a single knee, and people who have a chronic ailment like arthritis that affects more than the knees. In my case, having the knee replacements didn't "fix me for life." I'm still going to have challenges from my RA, and I may end up having other joints replaced. But I will never, ever regret the TKRs -- I know for a fact that without those surgeries, I would not be able to walk around today and work full-time and do just about everything I want to do.

Those of you who follow this page regularly may remember that I was planning to try to walk a marathon on December 8, 2002, to raise money for the Arthritis Foundation. For reasons explained below, I was not even able to walk from my couch to the bathroom in December 2002, but I'm doing better now and have decided to set my sights a little more realistically. Please check out my Arthritis Walk page to find out how you can support my Walk for a Cure on May 10, 2003 (or how you can walk on behalf of a chapter in your area!). [Note, 2/25/08: this link is no longer active]

My surgeon referred me to one of his partners, who is a lower-extremity specialist, and in January of 2003 I had a really spectacular operation done on my left femur. The broken hardware was removed, and the surgeon re-broke my femur in two places, realigned it, and put in a new set of hardware. The recuperation from this was pretty harrowing. I was in the hospital for two weeks, then stayed with my brother for six weeks. For the first six weeks following the surgery I could not put any weight at all on my left leg, so I had to use a walker and wheelchair to get around, and it wasn't a lot of fun

The good news is, the surgery was a big success overall. I did not get any new infections, as we all feared. The two fractured/rebroken/repaired areas of my femur have grown back in extremely well, and my left leg is now back to being close to the same length as my right (rather than three inches shorter as it was before!). The severe pain is gone, and I'm walking around at this point without crutches doing quite well. One reason I am telling you all this is that my right leg was put under a lot of stress during this recovery, with all my weight being put on it, and the knee implant held up spectacularly well. No pain at all.

The only bad news is that the femur surgery either caused or revealed a problem with my left knee implant. There is now a screw loose (no snarky comments, please!) inside the plastic wedge component of the implant that is going to have to be repaired or removed somehow. My surgeon (who is not the same one who did my original knees) seems a little baffled by the whole thing, and isn't sure what he is going to find when he goes back in there. I'm obviously a little unhappy with this turn of events. It means I'll have to have another operation later this year, once my femur is totally healed, to fix/repair/partly revise the left knee TKR. I'll keep you all up to date on what happens with this.

In the meantime, I am going ahead with my plans to walk for arthritis on May 31, 2003, in the Arthritis Foundation's Baton Rouge Arthritis Walk. Please consider visiting my personal walk page to find out how you can support my effort, or even find out about an Arthritis Walk in your area. (If you have read this page before -- yes, the walk was pushed back a couple of weeks.)

I pretty amazed -- and amazingly grateful -- that I'm going to be able to walk a mile for arthritis next month, when just two months ago I truly wasn't sure when I'd ever walk normally again. Chalk up another miracle for modern orthopedic surgery!

Anyway, I think that the pain I've been experiencing off and on in my right knee comes from arthritis, although I am not 100% sure. My rheumatologist and surgeon in Austin (the OS who did my original TKRs) both told me at the time that it's very hard to remove every bit of the synovial lining when performing a TKR. So, if you have RA or another inflammatory disease, you can still get a little bit of pain and swelling around the knee joint later. That makes sense to me as it seems to react to weather and to stress the way my other joints do. I don't feel like I have any symptoms of wear or of loosening, and the pain isn't severe enough for me to worry about.

No real update on the left knee, with the loose screw. My OS here in Baton Rouge just wants me to wait and heal as thoroughly as possible from the femur surgery before he goes back in to the knee, and I'm content to wait for now.

Update: February 6, 2004. A lot has happened since my last update. I started a wonderful new job in August, and everything seemed to be going well. Then, in September, one of the screws that was put into my femur in January 2003 broke. So, I had to have surgery again just a couple of weeks ago to repair that. It was a bummer to have to go through that again, but the good news is that the additional surgery doesn't seem to have caused any additional problems with my knee implant. In fact, it feels good, and the X-rays show that the loose screw still hasn't moved or changed position.

My right knee feels better than it did during my last update. I started on a new arthritis medicine in May 2003, and I think it must be having at least some good effect on my joint swelling. Overall I am very pleased with how my knees are doing. With the fifth anniversary of my left knee replacement approaching, both knees are comfortable and solid!

Update: January 30, 2005. Once again I've let a lot of time lapse since my last update, but I have a pretty good excuse. :-) Not long after my last update — on May 5, 2004, to be exact — the stainless steel plate that had been installed in January 2004 in my left leg to stabilize the neverending femur fracture broke. Yes, this was the fifth time that a piece of hardware failed on me. This time it took me several months to make a decision on what to do about it. My surgeon initially wanted to simply fix the fracture yet again, with a similar piece of hardware to the ones he had used before, but he wanted this time to keep me off my feet for much longer — as long as three to six months. I sought a second opinion, and also talked to my cousin, who is an orthopedic surgeon. After much research, we decided the best thing to do was a total hip replacement, which would totally remove the piece of bone that refuses to heal.

I was scheduled for surgery on Oct. 4, and one week beforehand, I tripped and fell on a hardwood floor at a friend's house, sustaining minor fractures to my right elbow and left shoulder. Thank goodness I didn't need surgery, but the pain was intense, and I had to wear a partial cast on my right arm and a sling on my left for several weeks. That meant I couldn't use a walker, so I had to postpone the hip surgery. Luckily, the arm fractures healed pretty rapidly — finally, a tiny piece of good luck for me! — and my hip replacement was rescheduled for Dec. 28.

I've created a new section of this website all about my total hip replacement. Check it out if you are interested. I should mention, while I'm at it, that my knees, bless their little titanium and plastic selves, are still going strong. Right knee is six and a half years old, and left knee is about to turn six. They're still sturdy, solid and about 90 percent pain-free. I do have a slight twinge every now and again, but that is extremely rare.

Update: April 25, 2006. The fact that so much time passes between major updates on this site is actually a good thing. :-) I've been updating my hip replacement website instead, since my knees are "old news" these days, in a sense! :-) It's now almost 8 years since my first knee replacement, and the knee is still going as strong as ever. It really feels fine.

Update: June 14, 2008. I just celebrated the 10th anniversary of my right TKR -- my first one, done June 10, 1998. It's hard to believe that only 10 years have gone by, actually -- so much has happened in my life since that day! I had no idea then how much lay ahead of me. I knew I would have my left knee done soon, and I did have it done about nine months later, in March 1999. My doctor preferred to do two knees separately.

My recovery from both surgeries was incredibly easy, and I realize now, after talking to other TKR patients over the years, how lucky I was. Of course, I was 28 years old when I had them done, and my health in general was better. I also think I had a really great surgeon, and I worked hard to do everything he told me to do. However, later in life I have gone through surgeries after which I worked just as hard and had complications or poor outcomes. I've learned sometimes you do everything right and still have problems ... it certainly isn't the patient's fault. But I encourage anyone who is having trouble to persevere and to keep asking the doctor questions. If something hurts too much or just doesn't feel right, ask and ask again. Ask to be X-rayed. Even consider a second opinion, especially if it's been five or six months after a TKR and you are still in terrible pain or terribly swollen.

With that said, I feel very grateful that my knees have done so well, and that so far, my hips are, too. They were replaced in January and April of 2005. To read about how my hips are doing, check out Robin's Total Hip Replacement!

Update: June 10, 2013. I almost feel a little stupid doing another update a whopping five years after the last one. But I thought I should celebrate my knee-versary! That's right--today is the 15th anniversary of my first knee replacement. I've had both knees replaced, but I had them done in separate operations at my surgeon's recommendation. I think that was because I was so young and had never had a major operation before. They really didn't know how I would react to general anesthesia and pain medication. Luckily I did fine, and due to scheduling issues on both my part and my doc's, I had the second TKR done about nine months later, in March 1999.

Both knees continue to be rock-solid. I have had numerous surgeries on my left leg for unrelated issues, and because I have a long rod in my left femur, the technicians almost always get my knee in the picture when X-raying my left hip/femur. My current orthopedic surgeon, who is also my cousin, mentioned to me the last time that the mysterious missing screw is still floating inside my left knee. I can't remember when we first noticed it, but he occasionally asks me about how my left knee feels, and the answer is always, "Perfectly fine."

I wish you all well with your TKR(s), and I hope you will find some help and support here and at the On Our Feet forum. Happy Anniversary!