lynn Posted April 16, 2013 Share Posted April 16, 2013 My sister is 50. She has had a disease which causes painful boil like sores at sweat glands. Horrible to look at, they travel, taking over more areas, constantly drain and painful. It seems that every health professional knows exactly what it is and there is no cure. Just surgery to keep the person comfortable a little longer. My mom was talking to a nurse friend of hers and her friend told her most patients don't make it past 55 but the way my mother described my sisters symptoms the friend told my mom that she is near the end. :crying: Please remember Lisa in your prayers and thoughts that she will be comfortable as she can be and that my dad, she lives with my parents, will be more patient with her. I don't think mom is going to tell lisa the entire truth about her disease for it will just depress her further. It's a very sad time for all of us. All of my sisters kids are adults and she has 2 grand children. They lost their father 4 years ago Thanks for reading. Quote Link to comment Share on other sites More sharing options...
BlessedMom Posted April 16, 2013 Share Posted April 16, 2013 :grouphug: Praying for your Sister, Lisa, & your whole family! :grouphug: Quote Link to comment Share on other sites More sharing options...
Unicorn. Posted April 16, 2013 Share Posted April 16, 2013 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
PachiSusan Posted April 16, 2013 Share Posted April 16, 2013 I am so very sorry. Quote Link to comment Share on other sites More sharing options...
Remudamom Posted April 16, 2013 Share Posted April 16, 2013 I'm so sorry. I will pray for all of you. Quote Link to comment Share on other sites More sharing options...
PentecostalMom Posted April 16, 2013 Share Posted April 16, 2013 So sorry, that sounds dreadful to deal with. (((hugs))) Quote Link to comment Share on other sites More sharing options...
Chris in VA Posted April 16, 2013 Share Posted April 16, 2013 I'm sorry. Quote Link to comment Share on other sites More sharing options...
StaceyinLA Posted April 16, 2013 Share Posted April 16, 2013 Praying. :grouphug: Quote Link to comment Share on other sites More sharing options...
happi duck Posted April 16, 2013 Share Posted April 16, 2013 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Slartibartfast Posted April 16, 2013 Share Posted April 16, 2013 :grouphug: Quote Link to comment Share on other sites More sharing options...
Tammyla Posted April 16, 2013 Share Posted April 16, 2013 :grouphug: Quote Link to comment Share on other sites More sharing options...
Mrs Mungo Posted April 16, 2013 Share Posted April 16, 2013 I am sorry, we will pray. Quote Link to comment Share on other sites More sharing options...
Catwoman Posted April 16, 2013 Share Posted April 16, 2013 Praying here. I'm so sorry, Lynn. :crying: Quote Link to comment Share on other sites More sharing options...
justamouse Posted April 16, 2013 Share Posted April 16, 2013 Prayers. Quote Link to comment Share on other sites More sharing options...
Momof3littles Posted April 16, 2013 Share Posted April 16, 2013 I'm sorry :( I don't know the back story, but I am not sure I agree with withholding info about where she is in the disease process. Perhaps I don't understand the circumstances fully, but it seems that could be valuable info. She may want to engage in end-of-life planning, living will, setting up POA documents, may want to investigate hospice/palliative care options. Is it possible that she'd want to know so she can focus on prioritizing time with grandchildren, etc.? I can understand not wanting to burden her with the info, but I hope no one is keeping her in the dark. Have any of her care providers discussed this with her? I hope I'm not overstepping, and I think you and your mom have your hearts in the right place. But I do think that people have the right to know info like that, because it may shape how they prioritize their remaining years, and they may want to set up legal documents and end of life planning, for example. Again, I'm so sorry. I hope I haven't overstepped. Just offering you my honest thoughts as someone who has worked in healthcare. Quote Link to comment Share on other sites More sharing options...
Momof3littles Posted April 16, 2013 Share Posted April 16, 2013 deleted duplicate post Quote Link to comment Share on other sites More sharing options...
mumto2 Posted April 16, 2013 Share Posted April 16, 2013 :grouphug: Quote Link to comment Share on other sites More sharing options...
ocelotmom Posted April 16, 2013 Share Posted April 16, 2013 I'm sorry :( I don't know the back story, but I am not sure I agree with withholding info about where she is in the disease process. Perhaps I don't understand the circumstances fully, but it seems that could be valuable info. She may want to engage in end-of-life planning, living will, setting up POA documents, may want to investigate hospice/palliative care options. Is it possible that she'd want to know so she can focus on prioritizing time with grandchildren, etc.? I can understand not wanting to burden her with the info, but I hope no one is keeping her in the dark. Have any of her care providers discussed this with her? I hope I'm not overstepping, and I think you and your mom have your hearts in the right place. But I do think that people have the right to know info like that, because it may shape how they prioritize their remaining years, and they may want to set up legal documents and end of life planning, for example. Again, I'm so sorry. I hope I haven't overstepped. Just offering you my honest thoughts as someone who has worked in healthcare. I agree. Unless she has some sort of severe cognitive impairment that would prevent her from understanding/remembering, it is not kindness to keep her in the dark. She may already also know from her own research or gut feeling, and being open about it gives her the freedom to discuss her feelings, plans, etc. and not feel that she has to protect *you*. Quote Link to comment Share on other sites More sharing options...
MomsintheGarden Posted April 16, 2013 Share Posted April 16, 2013 That is just awful. I'll be praying for your sister. Quote Link to comment Share on other sites More sharing options...
jms Posted April 16, 2013 Share Posted April 16, 2013 Praying for your sister and your family. What you describe sounds like Hidradenitis Suppuritiva. If this is the disease your sister has I am glad your mother has not relayed the information from her friend, because her friend is mistaken. I have HS, and it can be hard to live with, but it is not life threatening on its own. Every doctor I have been to and all the information I have read has confirmed this. It does increase the risk of getting certain cancers. Many people find they can control it somewhat through diet and finding out what triggers an outbreak for them. If you do a search you will find more information that is both helpful and hopeful. Quote Link to comment Share on other sites More sharing options...
PrincessMommy Posted April 16, 2013 Share Posted April 16, 2013 praying for your sister and your family. Quote Link to comment Share on other sites More sharing options...
Lizzie in Ma Posted April 16, 2013 Share Posted April 16, 2013 I am so sorry. :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
TammyinTN Posted April 16, 2013 Share Posted April 16, 2013 I'm so sorry. :grouphug: Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted April 16, 2013 Share Posted April 16, 2013 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
fraidycat Posted April 16, 2013 Share Posted April 16, 2013 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
RoughCollie Posted April 16, 2013 Share Posted April 16, 2013 :grouphug: :grouphug: :grouphug: If it is HS, as jms was wondering, I agree with what she said. DH has this, and he is 63 years old and has been told it is not life-threatening. This, in fact, is why hardly any research dollars fund finding a cure for this painful illness. http://www.mayoclini...urativa/DS00818 Quote Link to comment Share on other sites More sharing options...
Slartibartfast Posted April 16, 2013 Share Posted April 16, 2013 If my sibling had a serious illness I would discuss it with them. My youngest sister had breastcancer, we all know her prognosis. She knew her prognosis. When her liver began to fail we all knew what that meant but she knew more than anyone because she was a nurse. My sister passed away just a couple weeks ago and it was devastating but she knew, she always knew. This link has more information about the illness mentioned above, if that is what it is. http://www.patient.c...Suppurativa.htm Quote Link to comment Share on other sites More sharing options...
melissad2 Posted April 16, 2013 Share Posted April 16, 2013 Praying for your sister and your family. What you describe sounds like Hidradenitis Suppuritiva. If this is the disease your sister has I am glad your mother has not relayed the information from her friend, because her friend is mistaken. I have HS, and it can be hard to live with, but it is not life threatening on its own. Every doctor I have been to and all the information I have read has confirmed this. It does increase the risk of getting certain cancers. Many people find they can control it somewhat through diet and finding out what triggers an outbreak for them. If you do a search you will find more information that is both helpful and hopeful. :iagree: Quote Link to comment Share on other sites More sharing options...
Perry Posted April 17, 2013 Share Posted April 17, 2013 My mom was talking to a nurse friend of hers and her friend told her most patients don't make it past 55 but the way my mother described my sisters symptoms the friend told my mom that she is near the end. :crying: That nurse had absolutely no business saying that. She doesn't have her facts straight, and even if she did she doesn't have all the information to ever make a statement like that. The only one that should tell your sister that is her own health care provider, if it were true. And I very much doubt that it is. Quote Link to comment Share on other sites More sharing options...
Desert Rat Posted April 17, 2013 Share Posted April 17, 2013 :grouphug: :grouphug: I'm so sorry about your sister. I will keep Lisa in my thoughts. :( Quote Link to comment Share on other sites More sharing options...
mom31257 Posted April 17, 2013 Share Posted April 17, 2013 I'm so sorry for all involved! I'll be praying for peace, comfort, and wisdom. Quote Link to comment Share on other sites More sharing options...
Perry Posted April 17, 2013 Share Posted April 17, 2013 It's occurred to me that the nurse was probably thinking your sister has Cystic Fibrosis. CF patients have some issues with their sweat glands, but it is a totally different illness. They usually die before age 40ish. Believe me, you would know if your sister had CF. It's diagnosed early in life and is a chronic, severe illness. The nurse was confused. Quote Link to comment Share on other sites More sharing options...
Patches Posted April 17, 2013 Share Posted April 17, 2013 Praying for you and your sister. I'm so so sorry. Quote Link to comment Share on other sites More sharing options...
Twigs Posted April 17, 2013 Share Posted April 17, 2013 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
melissad2 Posted April 17, 2013 Share Posted April 17, 2013 That nurse had absolutely no business saying that. She doesn't have her facts straight, and even if she did she doesn't have all the information to ever make a statement like that. The only one that should tell your sister that is her own health care provider, if it were true. And I very much doubt that it is. My thoughts exactly... Quote Link to comment Share on other sites More sharing options...
Guest Posted April 17, 2013 Share Posted April 17, 2013 So sad. Praying for your entire family. Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted April 17, 2013 Share Posted April 17, 2013 :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Starr Posted April 17, 2013 Share Posted April 17, 2013 Perry gives good info so I'm going with what she says now too. :grouphug: Praying the nurse is wrong. Quote Link to comment Share on other sites More sharing options...
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