Reflections on My knee replacement

Recently one of our sweetaffliction.com readers posted a comment on David Simmons’ knee replacement article. It seems our reader Greg did not have as positive an experience with his knee replacement as David Simmons did. Well unfortunately neither did I. We are not trying to persuade anyone needing a knee replacement not to get one –  I for one am thrilled David’s procedure was so successful. But I do hope my thoughts will at least help you pause as you make this very important and difficult decision.

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

5 Responses to “Reflections on My knee replacement”

  1. Wow, I hate to say it, but this is not a story I want to see a week before my brother’s knee replacement surgery. I am so sorry that yours did not go well, however, every person is different. He has a great team of doctors and family behind him so we all pray for a great outcome.

  2. Well I could write a book on knee replacements. My husband went in for a total knee replacement on Oct. 19th. While in the operating room he got an infection. We thought he would lose his leg. The following Monday they took him back to surgery and took out the part that they thought had the germ. After 2 weeks we got to come home. He had to have an I.V. line put in his chest and down his arm so that we could run antibotics thru him twice a day. These were the strongest he could have. He lost over 35 pounds. He couldn’t hardly eat anything. After being home a few days he couldn’t bend his leg so he had to go back and they put him to sleep and bent his leg. We was in the hospital for a total of 3 weeks. So much medicine and so much pain. He just quit going to the hospital for out patient therapy. He was going 3-5 days a week. He is still having to work his leg and exercise it daily. He still isn’t able to work or be free of pain. This has truly been a nightmare. It isn’t always as it seems. He is 61 and was in good health other than that pain from his knee. Now he may never work as he was able to before. We had so many people praying for us. I know his surgery was an odd deal but things like this does happen.

  3. G’day from Australia! What a great website! Makes you feel like your not alone in the world facing our haemophilia challenges. My husband Alex has Haemophilia Factor IX (we spell it with an “E” in Oz]Ourlatest challenge is a knee replacement. He had this done 10 days ago and it has been a real challenge for him. We never know what to expect the next morning. He has had quite a few bleeds which were to be expected, I mean he is using muscles he hasn’t used in about 2 years. We made the decision to have the replacement because Alex is only 35 years old and he was missing out on so much. We have two young girls who couldn’t even go to the park with their dad or ride a bike with him. His sleepness nights were spent on painkillers and even they did’nt work for him. So it was either keep putting up with the pain or jump in the deep end and hope for a good recovery and a change in lifestyle. I hope his knee behaves so he can get on with the important things in life – playing his drums, fishing in his beloved boat and playing with his kids. As the days go on I will try to get back and let you know how he is getting on.
    FOR ALL YOU WIVES, GIRLFRIENDS & MUMS OUT THERE HANG IN THERE!! DON’T FORGET TO LOOK AFTER YOURSELF TOO! WE NEED PLENTY OF REST TOO OR WE WILL END UP GETTING RUN DOWN & WON’T BE ANY USE TO OUR BOYS. [DO I SOUND LIKE A MUM OR WHAT?]
    P.S. YOUR ROB THOMAS IS A STAR!! WE SAW HIM PERFORM IN FEBRUARY. FANTASTIC!!!

  4. As a 46 year old Aussie haemophiliac (less than 1% factor VIII) who is almost at the stage where I will be having both knees replaced, I thank you sincerely for your advice and warnings. I am sorry to hear that after going through so much, you are limited in your post-op mobility. I have heard both good and bad outcomes for this procedure. I guess you just have to roll the dice and face the challenges. Although you also have to try to give yourself the best possible chance by living cleanly and exercising for fitness and optimum joint strength. Not so easy to do when target joints are angry and inflamed! I find hydrotherapy is a great help.
    All the best for the future.

  5. Hi There,

    41 year old Haemophiliac from South Africa (we spell it with an “e’ as well). I have knee surgery on the 22nd nov 2010 (5 days from now). I have inhibitors as well, so this is really going to be a challenge. However the team around me are confident all will go well – it just has to. I am very nervous especially after reading all the comments from individuals who have had bad experiences. David, I pray that it does get better for you and I thank you for sharing your experience. I will make sure that I am not complacent about recovery.

    Please remember me in your prayers. God bless.


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