Dizzy Dame Posted January 21, 2006 Report Share Posted January 21, 2006 Hi all, So, as some of you may remember, I left MD on the 17th to go to Vandy for a workup and appointment with Dr. Biaggioni. I saw Dr. B on the 18th and after performing a few autonomic functions tests, he offered me a bed on the research wing. I was completely suprised, since no one told me hospitalization would be a possibility ( I assumed I would come down for more testing in a few months). So today is my third day on the CRC (Clinical Research Center). So far, the nurses are REALLY nice, and everyone here has a vast amount of experience with POTS. For those of you who are curious, here's the rundown of what they've been doing:Day 1: Autonomic functions tests at the outpatient clinic. These tests included an EKG, blow test, ice water test and orthostatic series. Then I met with Dr. B, who took a very detailed history from me. It was at this time I was offered a bed, and was almost immeadiately admitted. I understand this is not the common way to be admitted to the CRC, most patients are admitted in advance. Day 2: More functions tests. I was woken up at 6:00 am for a posture study. For this test, an IV catheter was inserted in my arm and was taken while lying down, and after 5 min of standing, 10 min of standing, and (I don't know how I did it) 30 min of standing. I was allowed to sit (feet flat on the floor) between draws. After, they began a 24hour collection. The rest of the day was relaxed, and since I was feeling good, Carl (my boyfriend) wheeled me around campus. Day 3: (today) I was woken again at 6:00 am for breakfast. At 7:00 I was told to drink any water I wanted to drink, and after 7:00 I was required to fast (meaning no food no water). At 9:00 am, they began the first med trial. I sat in a chair next to my bed for 30 min while my BP and HR were taken every 10 min. After the 30 min, I took the medication (I wasn't told which one it was...it was a blue pill). From there I sat for FOUR hours, standing for as long as I could or 10 min every hour. Today's med didn't seem to do much, and I was only able to stand for 3 min at best. The nurses let me sit down when my symptoms became too much, which was nice. I can say that the food here is lacking. I've been placed on a 150 mEq sodium diet A DAY! I'm used to eating about 6 grams normally. And no gatorade. It's amazing how quickly my health has declined without the sodium. I mean I'm very sick with the sodium and without the sodium, I'm almost completely bed bound, even standing up for less than a minute brings my pressure down to 79/50.I do feel (so far) that the program is worth it. I feel completely confident in the staff here, and don't have any worries at all. I'll see how I feel when all is said and done, but so far I would HIGHLY reccomend this study to anyone who wants to explore medications, or simply wants more answers. Hope everyone is doing well. Sorry for praddling on so long, if anyone has any questions, feel free to PM me. Hugs, Lauren Quote Link to comment Share on other sites More sharing options...
dizzygirl Posted January 21, 2006 Report Share Posted January 21, 2006 lauren.. hang in there.. so glad that you got into vandy!! really hope tha they can help ya Dizz Quote Link to comment Share on other sites More sharing options...
Sunfish Posted January 21, 2006 Report Share Posted January 21, 2006 (edited) lauren - glad you got there safely & good to hear from you:-) sounds like you're doing EXACTLY what i did back in may (which i think you may have read about) so i can totally relate to what you're doing - pretty much minute by minute.hang in there, melissap.s. if you get to wheel about again you should try to check out the children's hospital...it's really neat. Edited January 21, 2006 by Sunfish Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted January 21, 2006 Report Share Posted January 21, 2006 Lauren, I hope your trip and testing result in you finding the right treatment regimen that works to make you your most functional self.Nina Quote Link to comment Share on other sites More sharing options...
DancingLight Posted January 22, 2006 Report Share Posted January 22, 2006 Hi Lauren!So, you can't eat your salty plums at Vandy, eh??? I am grateful that you checked in with us...and I hope so much that you will benefit from this experience and find some relief from your symptoms. Most importantly, I'm wondering what DVDs are available that you are watching! Sorry, just teasing you, but I couldn't resist from your title! I'm glad your boyfriend is there with you through this all...Later alligator!Emily Quote Link to comment Share on other sites More sharing options...
Jacquie802 Posted January 22, 2006 Report Share Posted January 22, 2006 Hi Lauren, I tried to send you a PM so hopefully you get it. I hope you find some treatment that helps you be more funtional and feel better than you have been lately. Hope you have a safe trip home. Take care.Jacquie Quote Link to comment Share on other sites More sharing options...
mom4cem Posted January 22, 2006 Report Share Posted January 22, 2006 Hi,Glad you are being treated well and I hope this visit gives you more information, medication, whatever you need that when you leave it will be with a whole new promise of leading the life you want. Quote Link to comment Share on other sites More sharing options...
Dizzy Dame Posted January 22, 2006 Author Report Share Posted January 22, 2006 Thanks for the support guys. I'm in the middle of my third med trial. Today I got two little white pills and had to chug a 16oz glass of water. So far, nothing's happening. Emily, I'm not sure what DVD's they have in their library. Carl and I went to Walmart the first day and bought nine DVD's which we are donating, so if any of you come to Vandy after me, now you know what's on the menu. They include:Austin Powers I, II and IIIWhat Dreams May ComeLevityA Simple PlanChanging LanesSliding DoorsThe Best of Chris KatanAnd I want to check out the children's hospital, maybe today after my med trial if I feel up to it Quote Link to comment Share on other sites More sharing options...
DancingLight Posted January 22, 2006 Report Share Posted January 22, 2006 Lauren,You crack me up! That's so great that you will donate them...Emily Quote Link to comment Share on other sites More sharing options...
persephone Posted January 23, 2006 Report Share Posted January 23, 2006 don't watch what dreams may come, it will break your heart! I sobbed for HOURS and HOURS when i saw it! Quote Link to comment Share on other sites More sharing options...
vemee Posted January 23, 2006 Report Share Posted January 23, 2006 Thanks for the movies, I'll be there on Feb 20th. I am a little worried about passing the initial screening since I never have had a reaction to the breathing tests and the baroflex (sp?) test. I'll have to bring along my Cleveland Clinic hemodynamic results which said I had severe pooling. I think my problems are going to have something to do with my neurotransmitter levels so I hope they will be interested in me. Good luck and I am glad you got admitted especially after you went through your appointment getting postponed earlier. Quote Link to comment Share on other sites More sharing options...
Dizzy Dame Posted January 23, 2006 Author Report Share Posted January 23, 2006 Vemee,I'm sure they will take you if you want to be admitted. I heard that they even take people with only minimal symptoms (although most people who travel all the way to Tennessee have severe symptoms), so since you have big reactions, I'm sure you'll be a shoo in. I do reccomend bringing down any other movies you want to watch, and load up on all the food you want to eat before hand 'cause the food here is pretty bad. So far I've tried two medications that have helped a bit, I won't find out until the end what they are. I've mostly been reading and watching movies.--And Persephone, I did watch "What Dreams May Come" and yes, it did make my cry like a baby. I watched it during a med trial and my BP actually dropped because I was so sad! Hugs, Lauren Quote Link to comment Share on other sites More sharing options...
Lukkychrm42 Posted January 24, 2006 Report Share Posted January 24, 2006 Hey there, Thanks for checking in with us! I'm glad that you got admitted and that things seem to be going well so far! I hope they find something that works for you! Love,Megan Quote Link to comment Share on other sites More sharing options...
Sunfish Posted January 24, 2006 Report Share Posted January 24, 2006 (edited) lauren - very cool about the DVDs...i donated magazines but you definitely have me beat with the DVD donations:-) also..if you head to the children's hospital you can ask the nutritionist for permission to get ben & jerry's sorbet (just have to check the ingredients). it was a REAL treat for me:-)vemee - the criteria for admission for the primary study (unless there has been a change VERY recently) is a rise in HR of at least 30BPM upon standing. the other testing doesn't play into whether or not you can stay.... melissa Edited January 24, 2006 by Sunfish Quote Link to comment Share on other sites More sharing options...
DancingLight Posted January 24, 2006 Report Share Posted January 24, 2006 melissa,you just cracked me up! it's amazing what we will do for some good food! and, how happy we are to be able to eat after the GB! em Quote Link to comment Share on other sites More sharing options...
Sunfish Posted January 24, 2006 Report Share Posted January 24, 2006 glad i gave you a grin em i just hope i'm not passing on bunk info b/c i think they were worried about my 40lb recent weight loss (and the fact that i still couldn't keep all of my meals down while there) so were more into my eating what i could than the norm? if only they could see me now (all the weight's back and then some...) but anyway...sorry if i'm giving inaccurate tips! melissa Quote Link to comment Share on other sites More sharing options...
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