The Kent Splenectomy Trust.

• Guest 649

  • Registered: 12 Mar 2008
  • Posts: 14,118
  20 October 2009     09:2631000
  #1      
  I have not done a update on the above trust for along time on the Dover Forum,so I am now going to tell you all how it is doing.
  
  As you know this is a trust my wife and my self and a Dr Mayon White of the University of Oxford got it up and running when our son died of not geting hold of the right facts after having a spleen out.
  It is now 16years and we are still runing it without anyfunding .
  For the first few years my fact sheet was just going out to the U.K. only and also with the help of the N.H.S. we done a bookit for the G.P.and hospitals as well..
  But over the last year also after I put it out over the net,we are sending out the fact sheets all around the world most to the U.S.A.
  The swine flu has got this back in the headlines.
  Any public with out a spleen must email me A.S.P.
  I only got a email today from the U.S.A. thanking us for what we are doing,it went on to say they have nothing over there like our setup.
  But the cost of geting the fact sheets out in the U.K. is alot less then geting them out around the world, and now we both packed up work I do not know how much longer we can keep going.
  But we both know that geting the fact sheets out is saving lifes not only in the U.K. but around the world.
  THe swine flu has got this trust back into the headlines and if you know anyone without a spleen please get them to email me on victormatcham@yahoo.com.Thank you
• Guest 649

  • Registered: 12 Mar 2008
  • Posts: 14,118
  21 October 2009     18:4231133
  #2      
  I was hoping more of you would read this and if you or you know someone without a spleen would email me.
• Guest 653

  • Registered: 13 Mar 2008
  • Posts: 10,540
  22 October 2009     07:1231153
  #3      
  Vic
  
  I don't know anyone without a spleen, apart from you and some members of your family.
  
  It's not somethingh you wear on your jacket saying you have no spleen.
  
  There must be a register somewhere, but I doubt if hospitals would give out personal data; they probably couldn't under the data protection act.
  
  
  
  
  Roger
• Guest 3370

  • Registered: 26 Jul 2019
  • Posts: 1
  26 July 2019     15:45358501
  #4      
  I am 37 years old but had my spleen removed when I was 19. It was very enlarged due to hundreds of tumors. I had multiple surgeries to remove tumors that I later found out was caused by birth control. I was completely healthy before this surgery but after my health has completely depleted. I had an open surgery not laparoscopic. I have an many really bad infections and my white cells and platelets have been super high since my surgery, which is pretty normal. But I have had so many other things come up since then that don't seem to match others with no spleen. I go thru periods where I give up on my health b/c it is so frustrating. My doctors struggle to help me. I have seen all sorts of specialists and seem to always come to a dead end. My doctor has sent me to an oncology/hematology doctor, who then sent me to a rheumatologist, who then sent me to a immunologist, who sent me to a cardiologist, and so on. I have spent way to much money trying to figure out what was going on with me and I am so tired of it. I have had so much testing and at points I feel like it is in my head until I get lab results back that tell a different story. Many of my positive lab results line up with autoimmune issues but I have not gotten a diagnosis. My ANA is always positive, my cardiolipin antibodies are always positive, my c-reactive protein is positive, but I am negative for many of the lupus type tests. Besides a medication that I take for reaccuring UTI's the only other medicine I take is a pill that helps with extreme dizziness I deal with. I have a lot of trouble getting over infections and my platlets are so high that mulitple doctors keep requesting I get bone marrow biopsies. I have had two, which were both negative. Some days I want to give up. I don't know where to turn but I feel as though this is all connected in some way. I literally had no health issues until my splenectomy and now I am a mess. I am tired of being sick and feeling awful. I have been to University of Chicago and they just keep sending me to different specialist. I stopped going b/c I couldn't afford it anymore. I feel like I am back to square one. I have had so many random things come up over the years that just don't make sense. :(