By Felix L. Garcia
As someone born in the 1970s with severe hemophilia, I have experienced significant joint damage. With that, the question of joint replacement has come up. My parents faced this question for the first time when I was in elementary school.
At the time, the chosen course on my behalf was an arthroscopic synovectomy over the summer before entering middle school. That was fun… well, not fun, but necessary. It bought me a little time before actually having to get a full knee replacement. About 3½ years is what it yielded.
This was around the end of the 1980s and I was still not offered the choice of prophylaxis treatment to help extend the life of my knee. I know, I know… it sounds like the dark ages to young people with hemophilia and their parents. What can I say? There was life before prophy. Halfway through my sophomore year, my knee crumbled beneath me and there was no question – I needed a new knee. The question became, “How soon?”
Deciding on whether to have a knee replacement isn’t the only consideration. When becomes a big issue. In high school, I waited until summertime to have surgery so I wouldn’t lose a whole year of classes. That meant going to school and dealing with a lot of pain for an extra 3 months while getting around with a severely damaged knee, which meant more damage overall. We also have to look at our financial circumstances and whether the out-of-pocket costs could be afforded at that specific time. Financial issues can have lingering consequences.
Too often I hear from other bleeding disorders patients who put off joint replacement surgeries because they’re afraid the results will be worse than what they currently deal with. When it comes to knees, it’s easy for me to say, “Do it, do it, do it!” but not every joint is created (or re-created) equally. This has to be a well-thought-out medical and personal decision made carefully given all of a person’s mitigating circumstances.
An elbow may have other risks and options, and ankles are even more of a consideration because they bear the full brunt of a person’s weight, and the medical technology is not nearly as advanced as it is with knees or hips. The decision to have joint replacement surgery is a family concern. It will affect everyone around you. Of course, your doctor will play a huge role in your conclusion, but do not be too quick to put limits on who to include on your pre- and post-surgery teams.
Since my first knee replacement in 1991, I had my other knee done in 2014. However, that was not the end of my knee saga. The first knee I had replaced lasted me 25 good, long years—well outliving its 8-10-year expectancy offered back then. So, I once again found myself asking, “New knee or no new knee?” I’m a husband, father, grandfather, and still a son to my parents who were to be a big part of my care team. After living years with limits and pain, I still had some hesitation.
In my 20s, I worked in construction (not recommended for most with a bleeding disorder), and I took pride in building and creating. I found satisfaction in the sweating and working “like a man” (to fulfill the machismo in me). In time, things have changed and even though much of my work is on a computer these days, I still very much enjoy doing my own home improvements and repairs.
As time went on, my growing limitations had me calling on others to do the work for me, and it was a definite bruise to my ego. I know it’s old-fashioned, but as a husband, I still enjoy being the provider, protector, and Mr. Repairman to my wife. As a father, I miss not being able to keep up with my kids. As an employee with a job to maintain, I didn’t want to be less of an asset as I recovered. “New knee or no new knee?” The question reverberated in my head.
My biggest new knee advocate was my wife. She didn’t like seeing me in pain and frustrated all the time. She was with me through my last knee replacement when we were still in our newlywed stage. She knew what to expect. My children were also encouraging, promising to help. With teenage boys who normally don’t say two words in a row, that’s a big deal. Then there were my parents. The last time, they drove 300 miles to be by my side. They maintained the household and the kids and made the trip back and forth from their home to ours several times during my recovery. With all this heavy on my mind, the decision was made—it was time for a new knee!
There are a lot of ducks to get in a row before having any major procedure. Some of the tasks have to do with insurance coverage, providing proof of necessity, doctor’s schedules and availability, and the availability and preparedness of caretakers. Something many forget to consider in advance is their physical therapist. Meet with a therapist before the procedure. It’s important to establish a good connection and understanding with the person that is going to get you moving again and will be helping you achieve the desired outcome. It’s important to be on the same page when it comes to setting expectations. It’s very uplifting when your therapist views your progress as his or her own goal and is great at cheering you on.
Keep in mind even after the physical therapy sessions end, your personal commitment to improvement continues. My knee didn’t go bad all at once, and it will take some time to get it to where I’ll be satisfied.
Probably the most important thing and one that should never be left out of the preparations is to get in the right frame of mind. You will be the patient (repeat this to yourself). You will still be the partner, the dad, grandfather and son, but for this short time in your life, you will need to be the patient and allow others to help you. Let them.
Get it in your head your caretakers will want to take care of you. Get it in your head you will probably need some sort of pain management but understand it’s meant to be short-term. Don’t take what you don’t need. Get it in your head, this will be uncomfortable—even painful for a while, but it will be worth it to be out of constant pain.
Once you and your doctor have decided a joint replacement is the way to go, my recommendation is to set a goal and keep your focus on it. For one surgery, my goal was to be strong enough to ride my motorcycle again. For this latest surgery, I focused on being able to hike and play ball with my kids again. Whatever your objective, make it as big as you are willing to work. The bigger the goal, the longer it may take. One goal I had was to build a shed. Not one of those snap-together plastic things, but one for which I would have to pour cement. A trip to the store for lumber and materials, shaking the dust off my rusty old toolbox, my new knee and I were ready.
There’s nothing like sitting on the rafters of a roof you just nailed in yourself. I made and lifted the 4 walls myself, perfectly square I might add, then my son helped me attach the rafters and metal roofing. I finished the trim, installed a sliding door, and the job was done (I’m making it sound easier than it was).
As I sat on the roof waiting for my son to reload my nail gun, I realized, “This is why I had surgery.” I know everyone who has a joint replacement is not going to turn into Bob Vila (I had that skill set before surgery), but so many of us have things in life we have given up in exchange for fewer bleeds, less pain, and because we simply couldn’t do certain activities safely anymore.
Think about what that is for you and then ask the question, “New knee or no new knee (elbow, hip, ankle).” Lately, I’ve been hitting the basketball court with my boys for some much-needed cardio and just plain fun shooting hoops. It feels good. Thank you, new knee!
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