Comments for sweetaffliction http://www.sweetaffliction.com Tue, 13 Jul 2010 13:15:37 -0700 hourly 1 http://wordpress.org/?v=3.0 Comment on Bad Blood Documentary Trailer by Maureen Eck http://www.sweetaffliction.com/recentposts/bad-blood-documentary-trailer/comment-page-1/#comment-255 Maureen Eck Tue, 13 Jul 2010 13:15:37 +0000 http://www.sweetaffliction.com/?p=694#comment-255 I knew and loved two wonderful young men who were tragic victims of this horror. Leo and Matthew Murphy were dear friends of our family and lit up not only our world but everyone who knew them. I watched their dear mother, MaryLou, care for them through the years with courage and deep abiding love. She tended to their needs through their short lives and helped them leave us with a strength and enduring faith that was a gift to them and to all who witnessed this love. MaryLou went on to carry this deplorable event of the "bad blood" to all who could help prevent others from being affected. Leo and Matthew would be so proud of their mother. We miss them so much and weep for all who had to bear this "lie". I knew and loved two wonderful young men who were tragic victims of this horror. Leo and Matthew Murphy were dear friends of our family and lit up not only our world but everyone who knew them. I watched their dear mother, MaryLou, care for them through the years with courage and deep abiding love. She tended to their needs through their short lives and helped them leave us with a strength and enduring faith that was a gift to them and to all who witnessed this love. MaryLou went on to carry this deplorable event of the “bad blood” to all who could help prevent others from being affected. Leo and Matthew would be so proud of their mother. We miss them so much and weep for all who had to bear this “lie”.

]]> Comment on I have Severe Hemophilia and had a total Knee replacement! by David Simmons http://www.sweetaffliction.com/recentposts/i-need-a-knee-replacement-and-i-have-severe-hemophilia/comment-page-1/#comment-253 David Simmons Thu, 08 Jul 2010 17:04:43 +0000 http://www.sweetaffliction.com/?p=448#comment-253 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. 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.

]]> Comment on I have Severe Hemophilia and had a total Knee replacement! by Michele http://www.sweetaffliction.com/recentposts/i-need-a-knee-replacement-and-i-have-severe-hemophilia/comment-page-1/#comment-252 Michele Wed, 07 Jul 2010 16:47:28 +0000 http://www.sweetaffliction.com/?p=448#comment-252 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. 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.

]]> Comment on Bad Blood Documentary Trailer by Marilyn Ness http://www.sweetaffliction.com/recentposts/bad-blood-documentary-trailer/comment-page-1/#comment-249 Marilyn Ness Wed, 23 Jun 2010 14:00:57 +0000 http://www.sweetaffliction.com/?p=694#comment-249 Thank you for getting the word out about the film! We are going to grow awareness one person at a time so it's up to each of you in the community to spread the word about the film! Visit us online to get updates on the release plan and other related news! Thank you for allowing me to tell your story and for your continued support! Warmly, Marilyn Thank you for getting the word out about the film! We are going to grow awareness one person at a time so it’s up to each of you in the community to spread the word about the film! Visit us online to get updates on the release plan and other related news! Thank you for allowing me to tell your story and for your continued support! Warmly, Marilyn

]]> Comment on Baseball, Hotdogs, Apple Pie and Hemophilia by MJ http://www.sweetaffliction.com/recentposts/baseball-hotdogs-apple-pie-and-hemophilia/comment-page-1/#comment-248 MJ Thu, 17 Jun 2010 23:16:44 +0000 http://www.sweetaffliction.com/?p=460#comment-248 Wow! My son also lives for the game of baseball, been playing since he was 4 and watches his DODGERS on TV all the time! He is undergoing tests at this time to see if he has hemophilia, and as we pray he doesn't, we also have to ask ourselves if he does, are we going to take his passion of the game away from him? Your story has opened my eyes alot and touched me. I think as a mom we just want to see our kids happy, and if baseball makes them happy, then I say, "let em play" Good luck to you and your family Kyle!! Wow! My son also lives for the game of baseball, been playing since he was 4 and watches his DODGERS on TV all the time! He is undergoing tests at this time to see if he has hemophilia, and as we pray he doesn’t, we also have to ask ourselves if he does, are we going to take his passion of the game away from him? Your story has opened my eyes alot and touched me. I think as a mom we just want to see our kids happy, and if baseball makes them happy, then I say, “let em play” Good luck to you and your family Kyle!!

]]> Comment on Upcoming Hemophilia Sports Broadcaster by David http://www.sweetaffliction.com/recentposts/upcoming-hemophilia-sports-broadcaster/comment-page-1/#comment-244 David Tue, 08 Jun 2010 22:46:51 +0000 http://www.sweetaffliction.com/?p=669#comment-244 Andrew - you are fulfilling my dream! I too was sidelined from sports because of severe hemophilia but turned instead to watching sports as an outlet. I am also a HUGE Dallas Cowboys fan (since 1975) and one of my most prized possessions is a picture of me and Roger Staubach taken the year after they beat Denver in the Super Bowl. I love sports talk radio and many times have wished that I had pursued that field instead of business. Keep up the hard work and I know you will become a broadcasting star someday! Thanks for sharing your story on our website! Andrew – you are fulfilling my dream! I too was sidelined from sports because of severe hemophilia but turned instead to watching sports as an outlet. I am also a HUGE Dallas Cowboys fan (since 1975) and one of my most prized possessions is a picture of me and Roger Staubach taken the year after they beat Denver in the Super Bowl. I love sports talk radio and many times have wished that I had pursued that field instead of business. Keep up the hard work and I know you will become a broadcasting star someday! Thanks for sharing your story on our website!

]]> Comment on I have Severe Hemophilia and had a total Knee replacement! by Peter http://www.sweetaffliction.com/recentposts/i-need-a-knee-replacement-and-i-have-severe-hemophilia/comment-page-1/#comment-243 Peter Tue, 18 May 2010 04:46:22 +0000 http://www.sweetaffliction.com/?p=448#comment-243 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 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

]]> Comment on Sweet Kelsey Girl August 4, 2009 – February 20, 2010 by Michelle Gilmore http://www.sweetaffliction.com/recentposts/sweet-kelsey-girl-august-4-2009-february-20-2010/comment-page-1/#comment-241 Michelle Gilmore Sun, 25 Apr 2010 12:45:43 +0000 http://www.sweetaffliction.com/?p=628#comment-241 Andy, We only saw each other briefly at HFA and I only learned of your loss after we spoke. You are a strong family and Kelsey was a beautiful little girl. My condolences fo you and your family for your loss. Michelle Andy,
We only saw each other briefly at HFA and I only learned of your loss after we spoke. You are a strong family and Kelsey was a beautiful little girl. My condolences fo you and your family for your loss.
Michelle

]]> Comment on Lessons on Prophylaxis by patti johnson http://www.sweetaffliction.com/recentposts/lessons-on-prophylaxis/comment-page-1/#comment-240 patti johnson Fri, 09 Apr 2010 00:36:21 +0000 http://www.sweetaffliction.com/?p=614#comment-240 Your article was very inspiring, I can relate to what you are saying. My father who is now 71 has severe factor VIII and all of the other issues from the late 70s and early 80s. He was born too soon as he states. There was no factor during the early years and that is why now he needs all his joints replaced. He now takes his medicine 3 times a week and if needed for a bleed an extra dose. However my sister who is now 35 is also a hemophiliac but not as severe as our father. She was not diagnosed until 5 years ago. She only needs factor for surgery so far. I am also a carrier. My entire family is very active in the Hemophilia Community for as long as I can remember. My parents starred in a movie titled Unexpected Life. It is a movie for Hemophiliacs over 50 years old. Hope everyone is well and make sure you listen to your doctor and caregiver. Your article was very inspiring, I can relate to what you are saying. My father who is now 71 has severe factor VIII and all of the other issues from the late 70s and early 80s. He was born too soon as he states. There was no factor during the early years and that is why now he needs all his joints replaced. He now takes his medicine 3 times a week and if needed for a bleed an extra dose. However my sister who is now 35 is also a hemophiliac but not as severe as our father. She was not diagnosed until 5 years ago. She only needs factor for surgery so far. I am also a carrier. My entire family is very active in the Hemophilia Community for as long as I can remember. My parents starred in a movie titled Unexpected Life. It is a movie for Hemophiliacs over 50 years old. Hope everyone is well and make sure you listen to your doctor and caregiver.

]]> Comment on getting your flu shot? Infuse before you do! by Eric Reider http://www.sweetaffliction.com/recentposts/getting-your-flu-shot-infuse-before-you-do/comment-page-1/#comment-239 Eric Reider Mon, 05 Apr 2010 15:32:22 +0000 http://www.sweetaffliction.com/?p=592#comment-239 Roger that, definately get some Factor before Flu Shots, when I forget to infuse first I pay the price with an arm that swells like a baloon.. Best Regards Eric Roger that, definately get some Factor before Flu Shots, when I forget to infuse first I pay the price with an arm that swells like a baloon.. Best Regards Eric

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