Comments on: I have Severe Hemophilia and had a total Knee replacement!

By: Kathy

Kathy — Mon, 06 Sep 2010 20:59:09 +0000

Hi David, So glad to hear of a great outcome. Our grandson is 2yrs old and has severe hemophilia with an inhibator. Our daughter thinks he might have a hernia. They live on Kauai in HI and the medical is not so great there. He has to be flown over to Oahu to the children’s hospital. He has a port in now for his infusions. He takes Factor VII because Factor VIII doesn’t work on him. Our daughter is the carrier and we just found out that our other daughter is also a carrier, our oldest son does not have it…….as they say, he dodged the bullet. It comes back to me as having the gene mutation, so this was all just discovered in the past year and a half. It is good to see a picture of a good looking healthy young man. It is important to me to see that he can have a great and happy life and you are proof to me. I feel much better seeing your picture and reading your story. My Dad recently had that same knee replacement surgery. OUCH!!!!!! But he is able to do alot more, he just turned 82 this week. Once again, good luck to you and your family you are a hero in my eyes.

By: Steve

Steve — Wed, 25 Aug 2010 17:34:01 +0000

Nice story David. Several questions:

1) Do you have to take antibiotics for dental procedures now?

2) Did you need factor prior to every PT appointment? I feel like you probably would.

3) Do you still get bleeds in that knee or does that go away after the procedure.

4) How did you get off so cheap for $100k? I had a hernia repair and was in the hospital for 2 days and it ran almost that much.

Thanks, David.

By: David Simmons

David Simmons — Thu, 08 Jul 2010 17:04:43 +0000

Peter, your doctor falls in the category of those who fear the liability. I bumped into several of those before finding a doctor who was confident in his ability to make it work. Yes, there is an increased chance of infections for hemophiliacs, but if the bleeding is controlled carefully with high levels of factor, it reduces that risk down to almost what a normal patient would have. If the word “amputation” comes out of your doctor’s mouth, I wouldn’t use him/her. If you want to have the surgery in Dallas, then contact me and I will give you my doc’s name and office number. He specializes in knee replacements and has performed knee replacements on other medical professionals in the area.

Michele, elbow replacement technology has not matured. Elbow pain is a problem, but at least your son doesn’t have to bear any weight as in a knee or hip. If it were me, I would wait as long as possible on an elbow replacement to let the technology mature a bit more. I put up with the pain in my knee for 20 years or more before pulling the trigger. Probably should have done it earlier, but I wanted to make it last as long as possible into my later years.

To all, don’t let your doc tell you to hold back on the physical therapy due to the hemophilia. That was key for my recovery, but it took a ton a factor and pain management to get past that. You have to continue breaking up the scar tissue that forms after surgery around the joint. Do exactly what other patients do to recover successfully. It’s worth it in the long run.

By: Michele

Michele — Wed, 07 Jul 2010 16:47:28 +0000

Hi
I’m a mom of a 20 yr old severe hemophiliac son who would like an elbow replcement. We live in the Boston area and my son’s Dr’s do not advise a replacement. Did New England Baptist offer to do the knee replacement surgery? I’m just trying to do a little more research to see who may have more experience in replacement surgery for hemophiliacs.

By: Peter

Peter — Tue, 18 May 2010 04:46:22 +0000

I’m in the same boat brothers. 56 years old, severe factor VII, triple H. Iv’e been bone on bone in the right knee for many years and I just can’t put off the TKR anymore. It swells and puts me on crutches more and more frequently. It is really beginning to drain me of my vitality for life. The last time I was ready to do this, I got scared off by a well respected surgeon at Mass General Hospital who told me that “not too many things scare him, but that a knee replacement on a hemophiliac scared him.” He said that he had studied the research and that he felt there was close to a 50% chance of infection and that I could “very possibly end up with an “amputation” I have since received other opinions which disagree and put the risk factor closer to 17%. That’s really not much comfort, but at this point, it doesn’t matter. I really can’t go on this way, with the constant limping, pain and swelling. I am going to get a final consult at New England Baptist and I am planing, if possible, to proceed with the surgery ASAP. I will keep you all posted. I’m glad i found this blog. Thank you too my brothers and others for continued posts

By: Barbara Olivier - South Africa

Barbara Olivier - South Africa — Mon, 15 Mar 2010 08:44:16 +0000

Hi just “stumbled” accross your story. My husband who is 36 with severe hemophilia (factor VIII) is also considering knee surgery. I have printed your story and will show him tonight. We are going to see ortho on wednesday to discuss options, very scary, but your story is inspiring. I would like it if you could maybe get in touch, if you have time. Thanks.

By: juan

juan — Mon, 22 Feb 2010 23:56:17 +0000

i am a 31 yr old hemophiliac factor 8 deficiency. i have a bone on bone situation on my right knee which every other month is getting swollen i i have spoken to my doctors and they want to do a tkr on my leg but i am very afraid dont know what to expect

By: David Simmons

David Simmons — Tue, 12 Jan 2010 21:39:57 +0000

George,

I am so sorry to hear about your experience with your knee. I understand your frustration and hesitation with a third surgery. I would be interested in hearing an update from you if you get a chance to post. If things haven’t improved for you, I could recommend seeing my doc. I had seen two other surgeons before pulling the trigger with the guy I went with, but he was the only one who explained things in a way that I felt comfortable moving forward. When I left his office, I had no doubts that I was making the right decision based in part on my doc’s experience with knee replacements (several in week booked 4-6 months out), plus his confidence level that the surgery would improve my lifestyle and eliminate pain.

By: David Simmons

David Simmons — Tue, 12 Jan 2010 21:31:41 +0000

Mike,

All I was out of pocket was co-pays for the physical therapy which ran me about $75 per week for about 3 months. The hospital bill was $100k which included the surgeons fees, anesthesia, factor while in the hospital for 3 days, plus all the other things that hospitals charge you for. My insurance company picked up the tab at some amount that was pre-negotiated and less than the total $100k. I had to keep heavy doses of factor going for the first month and a half and intermittently during therapy. I have not added up the factor costs, but I’m sure it was a blow to my insurance provider.

By: Michael Tan

Michael Tan — Tue, 10 Nov 2009 06:10:46 +0000

Hi!,
How much did it cost you in doing the proceedure?

Im a bleeder also.

regards,

Mike