tag:blogger.com,1999:blog-9041936322035912190.post8584398698487917111..comments2023-05-17T01:12:21.817-07:00Comments on Clearly Alive: Mom's Letter: The Nightmare, Part BAnonymoushttp://www.blogger.com/profile/06636587607618735043noreply@blogger.comBlogger6125tag:blogger.com,1999:blog-9041936322035912190.post-19814949953528766202013-12-05T06:48:17.890-08:002013-12-05T06:48:17.890-08:00There IS standard protocol, it is just hidden away...There IS standard protocol, it is just hidden away in the hundreds of other protocols that the medical field is supposed to be familiar with. The basic gist of it is "Inject 100 mg Solu-Cortef immediately, no questions asked. Start IV fluids." Groups like Adrenal Insufficiency United are working on making this protocol more well known because it could very easily be the difference between our life and our death. AIU even puts together an Emergency Kit that can be sent to your local ER/Hospital (Go to http://aiunited.org/ and then click on "Purchase Emergency Kit" towards the top right of the page).<br /><br />And I LOVE hearing about people with AD working in the medical field. I'm convinced that makes you such a better nurse because you understand the importance of listening to the patient when they have a rare disease! My nurse on the hospital floor (once I got out of that dreadful ER) was so kind and compassionate. She stated she understood what it was like to live with something rare, however she did not mention what it was. It filled me with more confidence.<br /><br />Please continue to comment on my blog :) I'm happy you found my story!Anonymoushttps://www.blogger.com/profile/06636587607618735043noreply@blogger.comtag:blogger.com,1999:blog-9041936322035912190.post-77256056089593709882013-12-05T01:46:41.120-08:002013-12-05T01:46:41.120-08:00Oh how glad and forever greatful will I be to you ...Oh how glad and forever greatful will I be to you Amber and your mom!!! I am the one that just began to read today 12/5/13 and have responded to a couple posts! I can't believe how some doctors can be, they think they know and if they would just listen sometimes! I am a Nurse as well and I've seen them first hand and how they react when they don't know I am a nurse with AD vs when they know I'm a nurse with Addison's. Is there really even a standard on how to treat an Addison crisis? I saw you mention it but I'm not aware of a standard and honestly am not sure if there is one? This is the sad thing. In health care we have "universal standards" or "protocols" but I'm not sure there is a standard in ERs for how to treat AD patients when in a crisis. If there is a standard they are to follow there isn't one ER here in Omaha, Ne that has that standard. But they should! Scary and I am sorry you even had to go thru some of the things you have just because of a simple lack of knowledge and ego! I will keep reading and keep you close in my thoughts and prayers and if I can ever help just let me know! But you look like your getting this down pretty pat! <br />Thanks again for changing my life, for the first time since being diagnosed, I'm excited about my illness! WHAT?!? <br /><br />thanks to you and your mom !!!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-9041936322035912190.post-951512997718426372013-07-20T09:38:17.901-07:002013-07-20T09:38:17.901-07:00Thank you Nanny.
If at any point ANY of the docto...Thank you Nanny.<br /><br />If at any point ANY of the doctors had stopped and followed standard protocol ("Immediately Inject with 100 mg Solu-Cortef"), the severity of this entire situation could have been drastically reduced.Anonymoushttps://www.blogger.com/profile/06636587607618735043noreply@blogger.comtag:blogger.com,1999:blog-9041936322035912190.post-7726385324767664832013-07-20T09:06:58.810-07:002013-07-20T09:06:58.810-07:00I think that is the saddest part about my whole &q...I think that is the saddest part about my whole "nightmare." My story, although royally horrifying for me and my family, it isn't unique. It happens far too often with this disease.<br /><br />But I also believe firmly believe things are changing for us for the better. Groups like Adrenal Insufficiency United now exist specifically to raise awareness and help educate the medical community so that the number of new "nightmares" decreases drastically.<br /><br />Here's to a brighter future!Anonymoushttps://www.blogger.com/profile/06636587607618735043noreply@blogger.comtag:blogger.com,1999:blog-9041936322035912190.post-89236068170778295672013-07-20T07:32:53.021-07:002013-07-20T07:32:53.021-07:00I am going to ask my mom to relay her memories of ...I am going to ask my mom to relay her memories of the day. My whole family was with me. All 12 of them and about that many drs. All shrugging, I don't know what to do.....Anonymoushttps://www.blogger.com/profile/04221382680259417535noreply@blogger.comtag:blogger.com,1999:blog-9041936322035912190.post-76329570533693303022013-07-20T04:31:31.401-07:002013-07-20T04:31:31.401-07:00Just want you to know that after we heard the news...Just want you to know that after we heard the news,Poppy was seriously thinking of flying to Dallas to take care of the IDIOTS in the ER. He was going to cause a Stink all over Dallas. I had to calm him down. We Love you all so much but he has a real connection with Amber. <br />Love NannyBarbara Shermannoreply@blogger.com