Guest guest Posted December 30, 2003 Report Share Posted December 30, 2003 Dear , Are you sure that you need to be there 100% of the time? You are close enough to come home on weekends. I was an inpatient in the parathyroid protocols, and I could check out of the hosp any time that nothing was scheduled. Since my youngest son lives and works in DC, I even took off a weekend to sight see with him. I even got to shop in that wonderful Bloomingdales in Bethesda. I was there for 2 full weeks for testing, then home for a month and 2 weeks for the actual surgery. It is the most fantastic hospital I\'ve ever been at. You are assigned your own RN who is your case manager. There are no aides. RN\'s do everything (primary nursing)including teaching. Judy PS first surgery of the year for me is Jan 8! Judy/Atlanta The Ehlers Danlos National Foundation <a href='http://www.ednf.org'>www.ednf.org</a> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2004 Report Share Posted January 1, 2004 Hi Judy, What is your surgery for next week? Sorry, I must have missed something. I hope that everything goes smoothly and your recoery goes well!! I was at NIH as an inpatient once before for a week under a different POTS protocol with the same doctor. I have also been there many times as an outpatient. You are right, they are all wonderful, very knowledgeable peope there. I know that they will give you passes at some points but I'm not sure if they are just day passes. Also, the person who Iknow who has done this protocol ended up be confined to the hospital... actually her bed when she ended up so syncope-ish off her medications. I am afraid that could happen to me. I have started to wonder if they would allow me to spend time in the pain clinic working on other pain management things while I would be there. That would be a huge help... that and if I could get some things done from the EDS study att the same time. I guess the biggest thing that would cause me to say " no thank you " would having to come off my pain meds.. all of them.. and other things. I know that I would have to stop many things.. just not what yet. I was so terribly sick before that that is my biggest fear. Take care and I " m glad that your experience at NIH was so wonderful. It is a very unique place that's for sure!! n a message dated 12/30/2003 11:52:07 AM Eastern Standard Time, looselinks@... writes: Dear , Are you sure that you need to be there 100% of the time? You are close enough to come home on weekends. I was an inpatient in the parathyroid protocols, and I could check out of the hosp any time that nothing was scheduled. Since my youngest son lives and works in DC, I even took off a weekend to sight see with him. I even got to shop in that wonderful Bloomingdales in Bethesda. I was there for 2 full weeks for testing, then home for a month and 2 weeks for the actual surgery. It is the most fantastic hospital I\'ve ever been at. You are assigned your own RN who is your case manager. There are no aides. RN\'s do everything (primary nursing)including teaching. Judy PS first surgery of the year for me is Jan 8! Quote Link to comment Share on other sites More sharing options...
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