If you ask Charles what his favorite things in life are, he will reply without hesitation that his wife Amber, and two sons Jamey (three) and Max (four) are the lights of his life. Although Charles shares a similar passion for family with many other fathers and husbands, Charles is unique because he suffers from severe hemophilia. Instead of wrestling with his young boys like most fathers, Charles found himself unable to do so due to the severe deterioration of his left knee. After having to consistently miss out on play time with Max and Jamey, it became clear that the only thing Charles could do to improve his situation would be to get a knee replacement.

Born in 1984 amidst the height of the HIV hysteria and inflicted with target joint bleeding in his knee, Charles’ parents decided to only infuse him with Factor 8 when absolutely necessary in an effort to protect him from HIV and tainted blood products. However, as a result of his parents’ cautiousness, Charles’ knee grew progressively worse and he experienced some of the most painful bleeds imaginable. To try to inhibit the bleeding, Charles visited a doctor who gave him some ill advice consisting of immobilizing his knee by casting it for 18 months. The results were tragic; Charles lost the majority of his range of motion, his muscles severely atrophied, and the growth in his leg was stunted leaving him with a severe limp and a shortened leg. Despite the struggles with his knee, Charles was able to escape the ‘80’s HIV free, and in 1992 underwent a left knee synovectomy which helped reduce the number of bleeds and pain but regretfully ensued in a larger loss of motion. Over the next 18 years, Charles soldiered on by keeping the rest of his body strong through lifting weights and working out at the gym.

It wasn’t until the Spring of this year that Charles decided he had had enough and that it was finally time for him to get his knee replaced. He started the search for other hemophiliacs who have had knee replacements and through his research was able to find a doctor who would treat the knee surgery and rehabilitation as equally aggressive as a normal patient; reminding him that he would be fully dosed up on factor 8 and therefore would have no reason to hold back. On June 29th 2011 Charles successfully had his left knee replaced and after staying in the hospital for only two nights he was able to walk out of the hospital on crutches with a brand new knee. The cast was removed on the third day of post op and Charles was able to immediately put weight on it. Range of motion therapy for Charles was aggressive with him opting to skip the passive motion machine after the first few hours and move on to an exercise bike to break up the scar tissue (a process that has been compared to the pain of child birth).

Due to the aggressiveness of both his therapist and Charles himself, Charles has achieved incredible results in regards to his range of motion. Today Charles’s knee can be completely straightened out to zero degrees and bent to the capacity of 123 degrees, whereas beforehand his range of motion was ten degrees straight and 90 degrees bent. His range of motion was not the only good result of surgery, the surgeons were also able to actually lengthen Charles’s leg and remove the bow he developed as a child by inserting a replacement that would normally be used for a twelve year old.

If you ask Charles about his progress he would tell you it’s based on three things: determination, hard work, and lots of Factor 8. Charles infused to 100% for an entire month after surgery and even now he infuses prophylactically to about 50% as he continues working out and building joint and leg strength. Charles now walks with a cane and is learning to walk with a normal heal/toe gait. He spends a lot of time on his “simple” bike at home accompanied by stretching exercises. He is mostly pain free except for the days when he pushes himself too hard.

Charles’s knee replacement has been a great success. After being told by many that he could never have a knee replacement because of his hemophilia, Charles persevered. Instead of being defined by his hemophilia, Charles has shown everyone that anything is possible; including wrestling with your boys.

I had my knee replacement over 10 years ago at the age of 32 – one year after getting married. I found myself waking up in the middle of the night with my left knee literally locked up and in severe pain. Unable to straighten the knee out without experiencing agonizing discomfort, I would have to gently move the knee around in different positions until the bones would disconnect from each other.

When you have a bone on bone situation in a knee joint, all kinds of hell can break lose. For some reason my hell always happened at night. However, for the most part during the day I was still able to get around relatively pain free. Most importantly I still had around 110 degrees range of motion. Just enough to sit comfortably in a sports arena, go on a roller coaster, and ride a bike – a form of physical fitness that I could still enjoy despite my pain.

After getting x-rays the doctor proclaimed that because I basically had no cartilage, the only viable solution for me was a total knee replacement. I never got a second opinion or tried to come up with a different solution to solve the locking  problem. Nor did I attempt any kind of physical fitness for strengthening the joint. I am convinced to this day that had I gone on prophy and really worked out hard, I may have gone another several years or longer without having to do the replacement.

I had my replacement and never did experience any bleeding problems as a result of the surgery. What I did have,  and what I am warning those of you thinking of doing this procedure,  was a very conservative post-op hemophilia physical therapist.  Hemophilia nation – when you are dosed up with 100% clotting levels – enough to have your bones sawed on and leg cut completely open – the last thing you need is a hemophilia physical therapist who is treating you like you might still bleed.

I was put on a passive range of motion machine that only moved my knee several degrees slowly – instead of bending the heck out of it like most post op therapists tend to do. Nor was I put on a normal, aggressive post-op physical fitness program at home like most knee replacement patients are. My therapists and doctor all took the “let’s take it very easy and slowly with this hemophilia patient” approach.

Weeks later, I ended up with a lowly 60 degrees range of motion. 50% less than what I had going into the surgery. As a result, one month post-op I had to have a manipulation – a procedure where they give you an epidural and literally bend your knee all the way down to break apart the scar tissue.  However, by that time my knee joint had built up so much scar tissue that the damage was already done.

Today I have about 85 degrees range of motion on a good day. My leg muscles are extremely atrophied because I am unable to do much in the way of physical fitness and the scar tissue around my knee causes pain around the joint capsule and into my quad muscles including occasional bleeding and swelling in my quads.  I haven’t been able to ride a bike since the surgery and I will soon need to move into the handicap section of the arena where I watch my beloved Utah Jazz basketball games because I can no longer sit in my seat comfortably and bend my leg. Nor can I bend my knee enough to do things like ride a roller coaster. But hey, the dang thing doesn’t lock up anymore at night! You gotta love that!

So if you have hemophilia and are contemplating getting a knee replacement get a few opinions first. Wait as long as you can possibly deal with the pain comfortably. If you can afford prophy and that makes things better then by all means do prophy. Work out! Strengthen your muscles. Then once it is time for that replacement, make sure your doctor and post-op team are ready to push you as hard as they would push a normal patient. Factor up for several weeks and make sure you have a solid factor prescription/dosage schedule. Remind them to take those kid gloves off when you are doped up on factor! I’m pretty sure if you do these things then you will have a positive experience like David Simmons did and not like the ones our reader Greg and I had. These are all just personal opinions of mine and are by no means proven facts.

Written by David