Guest guest Posted November 17, 1998 Report Share Posted November 17, 1998 Dear Sheryl My husband died in 7 1/2 weeks, but he went through the same symptoms....we did put him on a feeding tube the last week and 1/2 and his temperature went up to 107 the day before he died. My prayers are with you and your family. hugs Beverly B. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 1998 Report Share Posted November 17, 1998 Sheryl, I'm so sorry to hear of your Mother's diagnoses. CJD is a horrible disease. My heart goes out to you & your family. My sister has CJD. ( 59 years old) She has a feeding tube also. I know there is a controversey over the use of feeding tubes. But what choice do we have, when a person can't eat, drink or swallow. She has pulled it out once, they replaced it, but if she pulls it out again they won't. My sister is in a Nursing Home for over 2 years now, when she first went in ( right after her diagnoses) she kept on running fevers, had eye infects, etc. I don't know if this the norm for CJD, but she experienced them anyway. She has been suffering for over 3 years now. Although, most CJD victims don't last usually last this long. Sorry, if I'm not much of a help, but thats about all I can say. My thoughts & prayers are with you & your family, Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 1998 Report Share Posted November 17, 1998 Item of interest for cjdvoice folks. This may not be news to all, but here goes. As background, mom died in 1990. Her tissues were examined by NIH and AFIP. While continuing to track things regarding her death, I contacted AFIP and requested another review of her tissues (slides) and more info on original AFIP 1990 findings. I rec'd a call today from Dr. Wong on this matter. (Dr. Wong worked with Dr. Stanley Prusiner during the " prion " discovery.) Dr. Wong advises that the presence of Fatal Familial Insomnia (FFI) and Gerstmann-Straussler-Scheinker Syndrome (GSS) can usually be detected in the H&E stained tissue samples (slides). Note: Both FFI and GSS are " strains " of family (inheritied) CJD. He also advises that the presence of FFI or GSS can be detected in blood drawn from the family members. Dr. Wong is going to revisit our mom's tissue slides and advise us if either the FFI or the GSS pattern was present. If he finds FFI or GSS, he will provide names of blood testing facilities that are familiar with this type of screening. Will provide update at later time on those facilities. This information can be most important for bloodline to know. Brent SBarwick@... wrote: > From: SBarwick@... > > Dear Sheryl > > My husband died in 7 1/2 weeks, but he went through the same symptoms....we > did put him on a feeding tube the last week and 1/2 and his temperature went > up to 107 the day before he died. > > My prayers are with you and your family. > hugs > Beverly B. > > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 1998 Report Share Posted November 17, 1998 Sheryl,, My brother had temperatures,,,in fact he would totally strip off all his clothes.....As for a feeding tube....Both with dad and my brother Drs refused this as it would mean prolonging their suffering.... Each family has to make their own decision based on what your mum would have wanted.......You can only do what you believe is best... Good luck.. duration >From: STrai6098@... > >My mother was recently diagnosed with CJD after a rapid deterioration taking >place over the last 3 -4 weeks. She is presently in a wonderful nursing home >south of Boston, MA. My father authorized a feeding tube before she left the >hospital for the home, and at present, this is the only way that she can >receive nourishment since she is no longer able to swallow. She is 67 years >old, and before the onset of CJD was a healthy woman. As of today she is >bedridden, incontinent, and unable to eat or drink, or communicate. Her eyes, >when open, have a dead look to them. She twitches and jerks and has been >running a temperature of 100 - 102 since last Thursday. I was wondering if >anyone knows if the fever is a symptom of CJD, since one of the nurses >suggested that what's left of her brain may no longer be able to control body >temperature. A month ago that would have sounded bizarre to me, but now >nothing seems too bizarre or horrific. Also, could anyone out there tell us >how much time they think my mother has to live based on their experience? Has >anyone else done the feeding tube route? Thank you in advance for any help >you can give. > >Sheryl > >------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 1998 Report Share Posted November 17, 1998 Janet, Have you considered Hospice for your sister? Hospice does not prolong life where there is no hope. Here is a link: http://www.hospicefoundation.org/page2.htm " >What is Hospice? ...................Pat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 1998 Report Share Posted November 17, 1998 Pat, Hospice came into the Nursing Home for my sister when they thought she had about 6 months to live. Her husband is her legal guardian now, I do not have the right to decide what should & shouldn't be done for her. At the time the feeding tube was suggested, it was thought to be the right thing to do. As I stated if she pulls it out again, it won't be replaced. (Not my decission, but I think I agree, It's really a tough call) Still I don't know if asked again if I would say no. I don't want my sister to suffer, but I can't make the choice for her to die either. I feel the feeding tube & shunts are prolonging her life & she would have died without them. But these choices were made before she was diagnosed with CJD. Right now the best choice is to leave it in the hands of God. I really can't believe is has lasted this long. Thanks for Care, Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 1998 Report Share Posted November 17, 1998 Pat, I forgot to mention. When my brother was dying from cancer, he was cared for by Hospice. They were a great help to him, his wife & grown children. Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 1998 Report Share Posted November 18, 1998 Dear Brent; Keep us posted on the results, my thoughts are with you. a G. Quote Link to comment Share on other sites More sharing options...
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