February 12, 2014 by realbkw

I’ve decided that I’m going to intersperse the story of the previous me with the stuff I’m going through now. There’s so much to do, and so much to learn. So here’s what the past couple of months have brought. It was triggered by the left knee replacement I had in 2010. I wasn’t having much pain in my knee, surprisingly, given all the damage to it. But I was having excruciating pain in my ankle. Knowing I would, sooner or later, need a knee replacement, they decided to do that BEFORE fixing the ankle…again. That made sense, though, since replacing the knee would realign the messed up geometry in my upper leg, which would naturally change the geometry of the ankle. In fact, once I became weight bearing on that leg, the pain in my ankle pretty much disappeared! It was miraculous! Finally, after fifteen years of fighting pain and difficulty walking, my leg was fairly normal! I was hitting the gym nearly every day and had finally reached a point where I could spin the pedals on the exercise bike! I finally had enough range of motion to do the full circle. I was going to talk to the physical therapist about putting a real bike on an indoor trainer and riding it to prepare for riding outdoors. All I needed was to regain my balance and some confidence and I could actually get back out on the bike paths! This, truly, was a milestone for me.

Then fate again reared its ugly head. My lower leg was getting a little red. Then it started feeling kinda warm. And my knee was hurting. This is not a good sign. I figured maybe, in my excitement, I’d overdone the exercises. The visiting nurse took a look and told me to call the doctor’s office. They told me to go to the ER. The ER told me I had an infection. Shit. Not good. So they admitted me and put me on antibiotics. This was Friday. On Monday they finally aspirated some fluid from my knee and had it cultured. Definitely an infection in the joint, and it had started to develop into cellulitis, which means it’s in your skin. That’s some serious shit, right there. So, transfer by ambulance back to the hospital where I had the TKR done. The infection requires a six-eight week course of intravenous antibiotics. It also means, once the infection has cleared, having all the parts of the new joint removed, sterilized, and put back in. Start rehab again. Start to get back on track…pain in knee. Redness. Swelling. Infection. Again. This time, take out the joint parts and toss ’em away. Fill the joint space with a “spacer” made of antibiotic-filled bone cement. The purpose is the antibiotics ooze from the cement throughout the joint area to help kill the infection. Along with the IV anti-biotic treatment, this is supposed to kill all the infection. Now, this is a common staph infection. It’s not MRSA, which everybody’s heard about. That’s the one that’s resistant to antibiotics. Mine should be cured with antibiotics. Should. Finally, after eight weeks, they let me go home. But they haven’t put a new joint in yet. So, still no weight-bearing on that leg. No bending it. It’s in a locked brace. For some reason the doctor won’t schedule my surgery for another couple of weeks, into the new year, which is ridiculous. I cannot get them to put me on the schedule. Then my brother sends him a letter, in his official kick-ass lawyer words, on his official law firm stationery, and suggests the doctor re-check his schedule and find a way to fit me in. Oooooh, that doc was not happy. He fit me in, but he was not happy. Anyway, surgery number four in the LTKR saga is scheduled. I get a new joint. But still he wants me to wait for physical therapy. Finally I get released to PT. My infection was discovered in late September. Two months in the hospital on IV antibiotics. Released the day before Thanksgiving. A couple more weeks before new joint, and a couple of weeks of recovery. Now we’re into month six, in February. The leg has been immobilized and non-weight bearing for about six months. I’m in for a lot of PT. 
Like always, I embrace it. I want to ditch the crutches and walk around like before. I have a life to return to, one that doesn’t include doctors and appointments. One that isn’t going to require co-pays or long periods reading old Ohio Hunter or Parenting magazines in waiting rooms. So I earnestly report to PT, hand over a co-pay that, in most worlds, should cover the cost of admission for a half-hour session but, in the world of American healthcare doesn’t come close. Still, at $25 a visit, three times a week, it adds up. But what price do you put on regaining the strength and motion to walk again? So I pays my monies and gets my ticket. I’m working. And I’m working. And I’m working. And the more I work the more pain I get in my quad. And every time I try to do my leg lifts Charles, my therapist, has to help. And as soon as he starts to let go my leg crashes down on the mat. Every. Single. Time. For a couple of weeks we go through this. I’m frustrated. I can see that Charles is starting to get frustrated. And I begin to sense that he doesn’t believe I’ve been doing my home exercises. Well, not only have I been doing them, I’ve been adding gym sessions and swimming. Still, no improvement. We decide I should stop wasting money and going to PT, and just continue on my own. I make an appointment with my surgeon to make sure everything’s okay. He says yes, it may take up to a year before I get my range of motion back because he’d had to cut through my quad muscle in order to put the newest joint hardware in. Wait. WHAT? And I’m just now learning this? Don’t you think you could have, SHOULD have, mentioned that before? Cuz, well, that kinda ‘splains why I CAN’T LIFT MY LEG thankyouverymuch. So glad I’ve been working my ass off in frustration, enduring Charles’ “looks”, and being angry at and disappointed in myself for being such a PT failure. When all along it hasn’t been my fault!
Although the quad wasn’t rehabbing well I was still regaining strength and was walking without crutches. But the pain in the quad was excruciating. Finally I turned to a program the Cleveland Clinic offered. I didn’t know it at first but soon learned it was one of the first of its kind and one of only two (at that time) in the country, the other being at The Mayo Clinic. The program at the Cleveland Clinic, or CCF, is the Chronic Pain Rehabilitation Program. It’s a multi-disciplinary approach that combines treatments using physical, occupational, and mental health therapies with alternative, non-narcotic medications, some used off-label. Throw in Tai Chi and Yoga and it’s a well-rounded program that has shown some great success. I was skeptical at first, but became a believer when I realized the goal wasn’t to eliminate all pain but to teach better ways to reduce it and live with it; to rely less on medication and more on coping skills. It DOES work. But when you have acute pain that means something is wrong. So again I started to feel like I was failing, because no matter what I did the pain in my thigh was not going away and I was not coping well with it. So I got a referral to see another surgeon for a second opinion. His was the same as the first. Since I could flex my quad that was proof the muscle was “firing” and I just needed to be patient, do the therapy, and in another year or so it’d be fine. This was in the spring of 2011. So I finished the Chronic Pain Rehab Program and continued going to the gym and doing PT at home. I even joined an Arthritis Foundation aquatics therapy program. I was the youngest one there by at least a decade, and I was new to a close group, which was awkward, but I stuck it out for many months. I’d go early and do extra exercise, stay late and swim some laps. Some days I’d skip the laps and go to the gym upstairs. I was trying, REALLY trying, to get back to that point I’d been before the initial infection. That point when I’d left the gym after a half-hour exercise bike “ride” thinking, “I got this! I’ma be back out on a bike in a couple of weeks!” The point I’d been thinking about since that fateful day in March nearly two decades ago.
Fast forward to the late summer, early fall of 2013. The Red Sox have turned their fortunes around! Placing last in the standings in oh-twelve, they were making a run for the pennant in 2013! And. AND! They might be facing the Cleveland Indians in the playoffs! How exciting is THAT?! Especially since the guy who took the Sox all the way in ’04 and ’07 was now managing the Indians! Terry “Tito” Francona had returned to Cleveland where, as a kid, he watched his dad play for the Indians. He skippered the Tribe to success and Cleveland was alive with playoff fever! Alas, they would lose a one game playoff for the wild card berth but, hey, for a couple of days this town was hopping! And speaking of hopping…
I was still in a LOT of pain. I stopped going to the gym. Stopped doing a lot of things. I reached the point where I was just getting through from one goal to the next without really living, which is really no life at all. The last goal had been hitting Vegas for my youngest sister’s milestone fiftieth birthday. It was a blast! Especially since ALL of my siblings and most of the kids were there. But, because of the pain, I ended up missing the signature event, the Cirque de Soleil performance! Huge disappointment. I was just grateful I’d made it out there and enjoyed the Friday night party and the afternoon boating on Lake Mead before conceding to the pain monkey. That was July. My next goal was my BIL’s retirement party in September. But before then I made an appointment with yet another orthopedic surgeon. There had to be some kind of explanation for this now unbearable pain. And my quad STILL wasn’t working properly. 
So I go down to the main ortho department at the Clinic’s main campus. By now I’m getting desperate for answers. And pain relief. And better mobility. I got my X-rays done and head upstairs to the office. I met with the new surgeon and got answers to my questions. I had prepared myself for the possibility that fixing whatever was wrong might require another surgery. By this point I’d lost count of the number of surgeries I’d had but it’s into double digits. Well, he had options for me. Yea, options! We all like options, right? Um, not THESE options. After looking at my films he had whittled mine down to two. Well, three if you consider the non-optimal option of doing nothing and living out the rest of my life in pain, unable to bear weight on that leg and just waiting for it to break. So, yeah, eliminate option number three. But that still left two options. Madame Curie’s wild discovery had gone digital and the doc showed my my leg’s innards on his flat screen monitor. Even my untrained eye could see there were issues. He explained those issues in layman’s terms. Loss of bone density. Loosening of the knee replacement hardware. Extra space. INFECTION! In reverse order, what that means is that I have yet another infection that has created extra space in the centers of my femur and tibia, allowing the hardware to loosen and move around as well as reducing the density of the remaining bone. Oh, and by the way? Your quad is not working properly because it’s not attached near your knee. He then told me there were a couple of ways to treat this and the options that he offered were these: 1. have my knee fused, which means surgery and a minimum of six months of non-weightbearing immobilization with a cast or, worse, one of those horrific looking exterior metal cages they screw into your bones, followed by months of physical therapy and a lifetime of (hopefully) walking with a straight leg; 2. have surgery to amputate the leg above the knee. Yikes! Hadn’t seen THAT coming! He allowed as how he didn’t do those kinds of surgery, so he was referring me to his partner, who does both types of surgery as part of his treatment of patients with bone cancer. So, yeah, here’s something for you to think about and stop at the front desk and they’ll give you an appointment. Come back and see me next week. 
I go home with those options pretty much sucking up all my attention. The drive home was one of those where you get to your destination and think “How did I get here? I don’t remember driving home!” So I ponder “my options.” Leave things as they are and spend the rest of my life in pain and misery. Or, have the knee fused and spend the rest of my life stiff-legged, possibly still in pain, unable to get in and outta the driver’s seat of my car, with a possible return of the ankle pain, which may require an ankle fusion, meaning surgery, six months healing, months of rehab, yada yada yada. Or I could opt for what’s behind OR door number two, amputation. Which means surgery, treatment of the infection, physical therapy, fitting of a prosthetic leg, and, hopefully within six months (optimistically) be back to walking around, working out, maybe even reaching again for that goal of bike riding! 
My second visit, a week later, and we talk more about the options. After the radiologist read the films and after he conferred with his partner, it seems that my realistic options have become, really, no option at all. Given the damage done by the infection and the loose hardware moving around, chances are a bone fusion would not be successful and I run the risk of 1. having the femur break as I’m walking along somewhere and 2. having an amputation anyway, after enduring a year or more of post-fusion recovery. And the odds of avoiding option number two were not looking good. As in a five to ten percent chance. If I was lucky, which ain’t exactly my middle name. Lucky, I mean. Because my middle name could believably be “Ain’t Lucky.” So, option number two it is! 
So that was the big news I hit you with in my opening post. Now that you know the choice I’ve made, this is a good stopping point. I know, I need to work at shortening the distance between my stopping points. I promise I’ll try. Until the next post, TIFT!

4 thoughts on “

  1. I can’t get over all you have been through Barbara, and the courage and resiliency you have shown. As close friends of Sue and Phil’s, we’ve had news of your challenges over the years, and are rooting for you as you face surgery today ! We’ll say lots of prayers Barb, and look forward to taking a ride on the Cape Cod Rail Trail as soon as you’re back on the road to a pain free life! Take good care Barb, sending lots of healing wishes and love, Jane and Ernie Charette

  2. Pattie Antonelli says:

    Hey Barb – not going to give you any “sage” advice since I am sure you have heard it all before. But will pray for you and that this is the decision God has led you to. You are brave and luckily (yes there is some luck there) you have a great family to support you.

  3. Anonymous says:

    Hi Barbara – What a journey you have been on throughout this years. Hopefully the “only option” will eliminate all your pain and help you to enjoy a better life – pain free. Please know that Karen and I will keep you in our prayers and positive thoughts for your surgery and beyond. May your surgery be successful and may your recovery be remarkable. Best wishes and

    • Anonymous says:

      Gotta finish that thought above Barbara…Best wishes and wonderful thoughts are sent your way. We hope to see you on the Cape soon. Be well, laugh often and love always. Glen and Karen Anderson

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