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

By: jay bowman

jay bowman — Thu, 15 Dec 2011 18:59:55 +0000

Thursday, 15th December 2011 at 11:47 am

my names jay bowman i live in wv and im 19 years old and i have to get a double knee replacement im hemophiliac type a sever and i have close to no cartlege in my knees. my doctors suggested me to get a knee replacement early of 2010 and i tured it down but now my legs are far worse and im gonna have to get it done but im worried in many ways about goin thru with it.. so i been reading everybodys storys and there outcomes and its out put me in better thoughts about it! right now i cant hardly run and in and out of the hospitals for my knees every month and had to give up alot of activities i enjoyed.. now just doin everyday things about make me cry from all the ache in and pain.. and i dont wanna keep goin on like this.. so i guess surgery here i come. thanks everybody for the helpful and comforting stories and experiences with your surgery’s..
thanks. jay bowman

By: Mitch Latham

Mitch Latham — Thu, 29 Sep 2011 10:51:33 +0000

Well the day finally came. Had tkr surgery of my left knee 9/20/2011. Everyone (including myself) was pleasantly supprised that the surgery was completed with zero issues. It has been nine days nine and I am still on my schedule for Factor (NovoSevenRT Factor VII) every six hours coupled with pain medication every 4 hours.

Pertinent information:
Sate = TN
City = Nashville
Hospital = Vanderbuilt University Hospital (VUH)
Hematologist = Dr. Ann Neff
Orthopedic Surgeon = Dr. Andrew Shinar
both of VUH.

The PT, or course, is the hardest to manage. Is very difficult to balance the needed muscle and joint working and stretching and the high risk of injuring the knee.

Facebook photo postings listed here:
http://www.facebook.com/mitchell.latham

I would be happy to answer any questions share my ongoing experience with anyone curious.

By: Dave johnson

Dave johnson — Sun, 28 Aug 2011 16:08:46 +0000

I am a 40 yo severe factor IX hemophiliac. I had a tkr in July of 2009. The process is very painful but worth it if you have good doctors and support staff. First, dr. Escobar, gulf states Hemo clinic. Second is the surgeon, Rodney plaster in Tulsa Oklahoma at a clinic called eastern Oklahoma orthopedic clinic. He invented a new joint that will last longer than twenty years because the bone grows into it! if you all have questions I am happy to share my experience.

By: Mitch Latham

Mitch Latham — Thu, 28 Jul 2011 16:48:58 +0000

I have been meeting with surgeons and my Hemotologist this summer. The surgeons both say they are ready but the BIG obstacle that my Hemotologist is very nervous about is my inhibitor. I have full confidence with these teams of doctors (Vanderbilt hospital, Nashville, TN) that if there is a way they will find it.

Has anyone who has had the knee repplacement surgery or are in the process of having it done, had problems with an inhibitor?

By: Patricia Schubert

Patricia Schubert — Sun, 26 Jun 2011 18:20:39 +0000

I am the mother of a son who is 30 yrs with severe VIII Hemophilia. He has had knee problems for years and is considering knee replacement. He has seen several doctors in San Francisco but wasn’t satisfied with them. Anyone who has had the surgery (David, Peter, etc) please advise where you went and which doctor you saw — surgeon & hematologist.

By: Mitch Latham

Mitch Latham — Sun, 17 Apr 2011 00:04:47 +0000

Hello, I am 39 with severe Factor IX. I have chronic joint disease in both knees, right elow and right shoulder. The elbow and shoulder I can lie with but my left knee has become an increasingly difficult burden to bare. I have asked many times about knee surgery and each time I always get, “surgery on you would have to be life threatening to even be considered”. That was from my old doctors. Due to other reasons I changed to doctors in another larger city who have offered hope in other aspects of my life. As a result of these posts I plan to press the matter with my new doctors. From what I gather from all the posts it all boils down to the doctors you have or obtain for the procedure. I will update as I receive more information. All I know is I can’t function much longer with each day each step resulting in a variying degree of pain.

By: karen hendrix

karen hendrix — Fri, 15 Apr 2011 05:10:39 +0000

david praise the lord for your story i am so glad to here that you are doing so well after your surgery. i have a 26 year old who had tkr on 3-23-11 he has severe hemophilia and it has been a nightmare. we was told that they would make sure that his hemophilia would be watched closely and that they would not let his levels drop to low. we lost faith in our doctors when not only did they let his factor level fall below 50. the day after surgery he was in icu because they didn’t give him enough factor before surg. and he started bleeding from where they had the tubes and he asprated and was coughing up blood for 9 days and had to be put on oxygen. and i asked the nurse when his next dose of factor was due and she said that the doctor had stopped it and he didn’t have anymore ordered. this was the day after surg. and i had been up with him all night washing out the pan he was spiting up blood in and listening to him gurgle and gasp for air. and his dressing on his knee was soaked with blood. i told her i wanted to see the doctor now. i couldn’t believe it and not only did he stop the factor they gave him a shot of blood thinner in his stomach. they said that they were worried about blood clots. at that time i wasn’t thinking about blood clots. all i was thinking about is that he needed his factor. we had problems with the doctors the whole time he was in there about his factor. and they knew his factor level is less than 1% and we still had to beg them to let him have it. one doctor said ok but blame us when he gets a blood clot. this was after we had them to stop the blood thinner because his i v messed up and when the nurse pulled it out blood sprayed across the bed. his leg kept a bleed in it just about the whole time we were in there. every time he would try to do pt it would get a bleed because he was not getting enough factor. he is home now after being in the hospital for 12 days (seems longer) he is taking his factor like his doctor here told him to and he’s doing a lot better praise the lord;still having a lot of pain though. its been about 3 weeks when will the pain get better? and how long will we have to worry about blood clots. i have enjoyed all your post and my prayers are with you all.

By: David

David — Mon, 21 Mar 2011 22:49:48 +0000

Hi Vahab,

That is awesome that your factor is free! The only bleeding I ever have is from the scar tissue I developed around the knee after surgery. That will occasionally tear and create small bleeds in the muscles above the knee cap – not into the joint. They are easy to treat and you may not ever have the same problem. My knee was done 12 years ago and is still in excellent conditions. The knees they have now are much improved so I am sure you should get at least 20 years out of yours unless you have problems of some sort which you shouldn’t. Good luck and thanks for visiting our website!

By: Abdul-Vahab

Abdul-Vahab — Sun, 20 Mar 2011 16:05:45 +0000

hi david,im vahab, im 23 yrs old, and i have hemophillia A- imean severe, im from iran, unfourtunately our country didint mention in the powers of the world, but the good thing here is that our Factor 8 supply is free in our country, so if i have operation on my knee my factor8 will be supplied freely, but i have questions from u david, did u have bleeding in ur knee after surgery ? , did u walk easily? without pain? and how many years this joints will work for us?-i know it was depended, but is it about 20 years?

By: Wayne

Wayne — Tue, 02 Nov 2010 19:08:33 +0000

I’m really gald to have come across this site. I am a 35 yr old hemophiliac,factor VIII,and I am concidering a tnr. I’m very afraid of the outcome tough. My brother also has the same problems as me, and he had a tnr last year,which resulted in an infection that could not be controlled,and they had to end up amputating his leg from the top of the knee down. I would appreciate any advice from any other hemophiliacs that have had a tnr. I really want to have it done, the pain and swelling I have now just doesn’t seem to stop. Thanks, Wayne