Guest guest Posted June 16, 2000 Report Share Posted June 16, 2000 Sorry you are getting so many notes from me. Answered one post before reading your last one. Thank you so much. When Ken was evaluated they didn't explain a single thing to us. They just said " you'll learn ". We believed he would have a harder time getting a TX. because of his rare blood type. What a relief... The Dr. said he already has cirrhosis. And his MRI's and CT's showed his liver is shrinking, and pretty small already. We have a major guilt trip going on here. When my husband and I think about our sons life-- it hurts. All durning high school we nagged him about being lazy and sleeping too much. His grades suffered and he had to go to summer school several times. Truth is he never learned much, but did finish. He never told us about UC and bleeding untill it got so bad he had to. Here we are now just trying to do the best we can for him. Thanks for the info-you and Aubrey have helped so much. Barb Re: C- P scores Barb,> #1- Since the labs go up and down so much - at> least at this stage of the game for Ken - do you have to have> those scores for any length of time? You are evaluated and given a status based on your current labs.If you have a bad set you might get listed (assumes you and yourdoctors want you listed). If you next tests show improvement youmight get taken off the active list and put on hold (status 7).In reality this reevaluation only happens when you get to thetop of the list, but like Penny, who was very sick at the timewhen she was listed, you might improve to the point thateveryone agrees you shouldn't be on the active list. Minorfluctuations in test results aren't viewed as a remarkablerecovery and reason to remove anyone from the list.> #2 - I thought Alk. Phos. figured in some how?As athan said, no. If (in a poor analogy) you view PSC as aroad from the top of a mountain (health) to the bottom(cirrhosis) Alk. Phos. is more like a speedometer than anindicator of how low you are.> #3 - Do you know if the RH.factor matters when it comes to tx?> Ken is AB+ Could he get part of my husband's B- liver ? Or> would he need my A+ liver? Ken is in the fortunate position of being able to accept a liverfrom all known blood types. O, A, B and AB. The rh factor is nota concern with organ transplants. The donor could be either + or-.Tim ltx 4/4/98__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2005 Report Share Posted October 23, 2005 Lois So far I have had some relief from the intense pain in my back. Now instead of it starting up about 10 minutes after I start moving I can go for an half hour to an hour before it starts. It all depends on what I am doing. Now I can move around some and not be in so much extreme pain. Although it does get way up there the longer I am on my feet. At work I can not just sit down when it hurts. I have to finish my client then I can stretch and bend to make it stop hurting. Its not to the point that I thought it would be but its just been over a week since I had it done. I am hoping in time it will tone down some more so I can get off my pain meds. I will let you know more as time goes by. > I have had radio frequency done for failed back surgery. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2006 Report Share Posted January 9, 2006 Wow, ! You sound like superwomen to me!! 7 kids and all of that pain! Like I said, WOW!!! I only have one little girl (5) and somedays I feel like that is too much to handle...I can't imagine having 7. But that is 7 times the blessings for sure. Welcome to the group. I'm sorry you need us but glad you are here. Take care, Caitlin Vinson wrote: Hi, My name is and I am 40 year old single mom to 7 adopted children. I work full-time as a insurance precert coordinator . I have a 70% sit down job that is tough on a person with CP. I was diagnosed over 10 years ago with CFS, Fibro, CP and clinical depression. about 6 months ago I was diagnosed with Osteoarthritis in both knees. --------------------------------- Yahoo! Photos Ring in the New Year with Photo Calendars. Add photos, events, holidays, whatever. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2006 Report Share Posted January 14, 2006 Thanks Caitlin. I don't feel like a superwomen but I know that at times I have to be. LOL Sorry I did not see your response till now. I have so much mail to catch up on it is crazy. LOL Thanks again. Caitlin Kennedy wrote: Wow, ! You sound like superwomen to me!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2006 Report Share Posted January 17, 2006 , I hope this email finds you and your children well.I hope you are having a good pain free day. You are an inspiration to me, and I'm sure, your kids as well. Take care, Caitlin ~Momtoo7Kidz wrote:Thanks Caitlin. I don't feel like a superwomen but I know that at times I have to be. LOL Sorry I did not see your response till now. I have so much mail to catch up on it is crazy. LOL Thanks again. --------------------------------- Yahoo! Photos Ring in the New Year with Photo Calendars. Add photos, events, holidays, whatever. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2010 Report Share Posted March 13, 2010 Our hearts and prayers are with you ..........hang in there! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2010 Report Share Posted March 13, 2010 O Jeanie, you made my night and brought us a happy smile!! Thank you!! I showed my lil guy! > > Our hearts and prayers are with you ..........hang in there! > Quote Link to comment Share on other sites More sharing options...
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