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