Finding Hope in The Perfect Storm, My Total Knee Replacement Story

The month of May has certainly been a busy one, with vacation, celebrations, and more as the weather has warmed up. However, the most significant event has been my left total knee replacement that just took place last Friday on June 2nd, and the lengthy preparations that came with that.

Many of you may know my story, having seven prior surgeries to this and multiple autologous regenerative cellular (stem cell) therapies. This was all from a volleyball injury six years ago where I tore my ACL, MCL, medial meniscus and lateral meniscus...completely dislocating my joint. From my initial reconstructive surgery (not knowing then that I had lupus), I developed a serious post-operative staph infection that went septic. As I always say, I am forever grateful to have both my leg and my life today after that. This, following with various other surgeries, emergency wash outs, scar tissue removal and manipulation, a clear-out of all infected grafts a year later, and then starting all over again six months after that. My body has been through a war, and developed severe osteoarthritis in all three compartments of my knee. It was a perfect storm; the trauma of the injury, trauma of the surgeries, recurrent infections, and now my lupus discovery on top of it all just last year.

After the effects of my regenerative therapies (which I still believe are amazing and DO work for many!) had worn off and the degeneration quickly escalated, I knew that I had to see a joint specialist. I received one bone marrow aspirate concentrate treatment and four PRP injections, so I knew I was at my limit for how good my knee was going to get. I am grateful these therapies extended the life of my knee so that surgery was not needed until after I graduated from college, we were thrilled that it worked at all! Seeing my recent images however, all doctors involved with my case knew that my knee was just too far gone for any alternative treatment.

Since last summer, I noticed a sharp decline in my quality of life. It pained me to walk more than a block, and I would begin to limp from my inability to fully extend my leg due to the arthritis. Despite never doing barbell squats again, and altering my lower body workouts (for example, starting to practice yoga) I was still unable to bend my knee fully. I could not sit on my heels, I could not sit cross-legged, I was barely able to walk up a set of steps without holding a handrail, I could not turn over in bed, I could not do a simple quad stretch or kneel down to pick something off the ground. I simply adjusted and hinged from my hips and back, which is no way for a 23 year old to live. Not to mention, it will cause other problems with the constant compensation! From the condition I was in, which was my new normal, I was not myself. Rather than my previous surgeries and physical therapy sessions where my goal was to "play volleyball again" or "squat 250 pounds again," this pursuit was purely out of desperation to have a decent quality of life again.

In December of 2016, I went forward with this and sought out a joint arthroplasty specialist. I will not mention the hospital or name of the surgeon, however he truly had only his ego in mind. This doctor blatantly told me, "Yes, you need a total knee replacement. No, I will not help you." This was given my history of infection, my young age, and my history of lupus. There was a lot at risk. He verbatim told me that I "just have to learn to live with my disability until I'm in my 30s." Excuse me, what?! This is unacceptable, and despite your oath as a doctor, you are causing more harm and more distress to my body by refusing me treatment. In the moment, I was so upset that I broke down crying in front of him, hopeless that I will never find relief of my condition. This is the only thing that can help me, but I cannot have it. With his smirk, he left, and I was fooled into defeat thinking that I have to go on living this way for at least a decade more.


When things turned around....


Fast forward to March of 2017. I come home from a yoga class in tears. I found something that I love and is easier on my joints, but I am still having intense pain and reduced joint function. I have already altered my lifestyle tremendously, you know, to "learn to live with my disability." No relief, just more and more agony as the days go on. My parents were done seeing me like this, and my mom basically told me hey, this is one doctor who is clearly just looking out for himself, who says you can't get another opinion? She was right, the way he treated me was inexcusable. Finally, through lengthy research, my dad found Dr. Thomas Sculco, Surgeon in Chief Emeritus at Hospital for Special Surgery right over the river in New York City.

I called, expecting to be denied as a new patient because this is a very important man. Luckily they directed me to send my current x-rays over to their office (a policy they have before making new appointments) and they will have him take a look at them. They mentioned it may take some time, because he is backed up from being on conferences, but they will definitely let me know one way or another.

Through many daily prayers, I received a phone call from their office pertaining to making an appointment. The woman on the other end of the line said "he definitely wants to see you, how soon can you come in?" And just like that, with this extremely busy man, I got an appointment within one week. God was really on my side that day.

When I met with him on March 23rd, I received many odd looks from people because I looked so young to be one of Dr. Sculco's patients. He is a knee and hip arthroplasty specialist, and has performed more than 20,000 hip and knee replacements to date. I first gave a brief synopsis to the nurse, and then again to a fellow that is training with him (lucky guy). The fellow that met with us asked me many questions, and verified that I definitely want this because my quality of life is suffering, not just because I can't go run a marathon and am upset about it.

He went outside the room and returned with Dr. Sculco, who was needless to say shocked at the story he heard. Dr. Sculco then took the time to go over every single angle of my x-rays with my mom and I. This was when I learned that I didn't just have arthritis, every compartment in my knee is degenerating day-by-day. My knee is bowing inward and has deformity. My tibial plateau (the top of my shin bone where my meniscus is), has flattened out, causing bone spurs to pierce the collateral ligaments (the side stabilizers) of my knee and causing further injury and irritation. My meniscus has almost completely degenerated, and a portion has been expelled out of the joint space due to my "bone-on-bone" condition. My patella (knee cap) was pre-osteoporotic, meaning it was decalcifying and degenerating to nothing. I had no cartilage to cushion my joint. Quite frankly, it was just a mess. He said to us that if we did not take action in seeking out help, my knee joint itself would actually fuse within the next few years, which is something that I would not be able to come back properly from. I asked him about his concerns with my previous issues regarding lupus and infection, and he gave me the most confident response. He said yes, there are risks, but went on and explained his game plan regarding new medications, placing antibiotics in the cement for my implants, and what measures they take at the Hospital for Special Surgery to control autoimmune issues and prevent infection. To this day, they have the lowest infection rate of any hospital in the country. After over an hour spent with him, I gave him a hug and thanked him for finally giving me hope after this six year journey.


The big day...


HSS is extremely efficient in adequately preparing their patients for surgery. About two and a half weeks prior to my surgery on June 2nd, I went to the hospital for my pre-surgical screening day. That day, I met with a therapist who gave me an itinerary for my recovery, I had various tests performed to assure I was in good health for the surgery, I attended a joint replacement patient education class given by one of the nurses, and I met with an internist/rheumatologist and an infectious disease doctor to come up with a game plan to prepare me for a successful surgery given my situation. I had a whole team in my corner! Now I realized this was actually happening.

Sporting my "Optimist" shirt on my pre-surgical screening and education day!

After celebrating my boyfriend graduating with his Masters degree and enjoying a vacation to Marco Island, Florida with my family, it was finally time. I was worried naturally about my prior health issues, but I was at peace with the operation because of how perfect this doctor was and how compassionate, intelligent and empathetic he was. You can read more about me advocating for my health journey here. On June 2nd, I marched my way into HSS for the last time with my damaged knee, only to crutch out of there with a brand new one.

It was a long day, mostly because nothing can ever go completely smoothly with me. The surgery was a complete success though. Dr. Sculco said that when he actually got to see the inside of my joint, it was just so fatigued and damaged from the years of trauma and disease, that he was very happy we went through with this. They put me under sedation, I was completely out however I was able to breathe on my own and wake up much easier from the surgery. In addition to this, I had a epidural catheter placed right in my low back, which administered pain medication directly to my leg for the first 24 hours as well as administering a spinal block through the surgery. Although this helped tremendously with the pain post-operatively, I was paralyzed from the waist down. And of course, I took forever and about 6 hours later, I came out of it and gained feeling and function back in my lower half. *insert eye roll here*

I did have to spend a few days in the hospital, where they monitored my vitals, infection risk, lupus flare ups, incision site etc. I also had a drain with two tubes in the side of my knee to discharge any excess fluid or blood around the joint for the first 24-48 hours. This helped SO much with post-operative swelling and pain. Physical therapists also worked with me to get up and walking first with a walker, and then with crutches as I progressed to be discharged. My experience there was nothing short of phenomenal (even the food!) and every single staff member I came across wanted to do their best to make me comfortable and look out for me. I am so grateful to have worked with such an awesome and passionate team all the way through from start to finish.

Night 1: after being discharged from the PACU after 6 hours

Day 2 post-operatively, right after the drains were removed from the side of my knee.

Now that I have been home for about a week, I have made stunning progress that I did not expect whatsoever. I have almost no more swelling now, my knee is perfectly aligned, and I have zero joint pain. The discomfort I have experienced the most was in my femur and tibia, more of a deep ache from the "carpentry" (aka hammering the implants into my existing bones). Despite some flare ups from lupus reacting to the trauma of surgery, I have progressed through a week of home physical therapy, practicing activities of daily living and range of motion stretches, and I am now released to outpatient physical therapy. Within this week, I am down to walking with one crutch, I am already bending my leg to 93 degrees (without anymore crunching), and I have only about two more degrees to go until I have full extension! I was actually at minus five degrees of extension before my surgery, so I am already better off. The strength will come as the weeks go on, and I will become more and more confident with my leg.

Me and the miracle worker himself, Dr. Sculco!!

As I reflect back and try to tame my impatient desire to get up and go do everything again, I applaud my progress within just this week and how I ALREADY feel the benefit to this surgery. I feel that because of all the terrible and frightening experiences I have been through, in addition to the expertise of Dr. Sculco, recovering from this surgery has so far been a walk in the park in the grand scheme of things. I'm used to excruciating pain, only to MAYBE have relief. Now, it's a sure-fire thing! I am certainly very blessed to have learned so much from my journey, but to now have it end better than anyone could have imagined. Thank you from the bottom of my heart to Dr. Sculco, who has confidently taken on a hopeless case and turned it around into a success story. I am so eager to see where I will end up in the weeks, months, and decades to come.

Hospital selfie with my saint of a boyfriend, Joe.