lulusoccer Posted January 5, 2014 Report Share Posted January 5, 2014 Starting tomorrow January 6th and until Friday Jan 10th I am going to be an inpatient at Vanderbilt Medical Center for POTs research. It's an all inpatient stay. When I was first diagnosed with POTs I did some research on various medical centers in the US that are treating and doing research on POTs and I found Vanderbilt. I have not seen a specialist for my POTs and where I live there is not one in my state. So I am very excited to be heading to a medical center where all of the doctors and nurses know exactly what it is I have! When I first decided to go in for research I tried to look to see if I could find any information on the internet about other people's experiences but I couldn't find any. I plan on posting everyday I am there here on exactly what test they are running and what types of information I am receiving! My hopes is maybe somebody else will decide to go in for their research side! I'm hoping for myself to gain some more information on what sub-type of POTs I have and better treatment options. (As well as benefit them for their research!) Here is a link that talks about their research program:http://www.mc.vanderbilt.edu/root/vumc.php?site=adc&doc=29788Also- I will say they have been great so far! They were really quick to respond to my application and quick with all the other e-mail communicationsI'll start posting tomorrow night after my first full day on the unit!-Melissa Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted January 6, 2014 Report Share Posted January 6, 2014 Yay. I can't wait to hear about it!!!!! I'm in Montana. Nada out here. My Fam is there. Would love to go to vandy. Safe travels Quote Link to comment Share on other sites More sharing options...
looneymom Posted January 6, 2014 Report Share Posted January 6, 2014 Good luck and keep us posted.Rachel Quote Link to comment Share on other sites More sharing options...
davecom Posted January 6, 2014 Report Share Posted January 6, 2014 They really seem to be doing a lot of the cutting edge research. Looking forward to hearing what they tell you. Keep us posted. Quote Link to comment Share on other sites More sharing options...
dkd Posted January 6, 2014 Report Share Posted January 6, 2014 Hi Melissa, are you caving in your avatar? I used to do that in a former (younger) life-haha.Thanks for letting us know about your visit and how it goes. I look forward to reading about your experience. Quote Link to comment Share on other sites More sharing options...
lulusoccer Posted January 7, 2014 Author Report Share Posted January 7, 2014 Hey Guys! Well day 1 is almost complete and I will say they have been great so far! Absolutely wonderful! The nurses, doctors, dietitians and support staff have all been very nice! It feels great to be at a place where everybody knows what POTs is! Today was an easy day. They got me acquainted with the room I was staying in. They had some admission questions they wanted to ask and then I talked with a resident who is studying POTs. He seemed very knowledgeable as well and I guess this was his second time on this unit. I also got to meet two of the people I had been conversing with through e-mail prior to my arrival. I met one of the doctors as well and he gave me some information on adding a beta blocker to my treatment. One of the research nurses gave me my "calender" for what test I can expect for the week. There are about 4 I think they are going to do. They seem like common testing a lot of POTs patients have done. Once I have them I'll post about them. Today they just had to draw a blood sample to check a cbc, cmp, and pregnancy test. They also did an EKG. They do Orthostatic Blood pressures before every meal and at bedtime as well. I am also on a very strict diet - you only eat what they give you and you need to try and eat everything they give you. The dietitian talked with me when I first arrived and I was able to look at the menu they already have made for you and if there is something that I didn't like she was very accommodating. I've had 2 meals here so far and they were both pretty good. Overall, I am still very excited about being here and everybody has been great! (And yes DKD - my avatar was in a cave in Belize - (I was on an excursion from when I went on a cruise!) It was great! I got to zipline through part of it as well!) Quote Link to comment Share on other sites More sharing options...
lulusoccer Posted January 8, 2014 Author Report Share Posted January 8, 2014 Day 2:This morning they woke me up around 6 and placed an IV and then I went back to sleep for about an hour and then at 7 my nurse came in and did a Posture Study. They take some blood while lying down and they do supine blood pressures. Then they have you stand up and the goal is to stand still for 30 min. You can sit if you can't stand anymore. The goal then is to draw blood again close to the 30 min mark of standing. They had me sit at the 10 min mark cause my HR was 163 and my BP 6749. I sat for 5 and then stood again for 10 min. My test was stopped around 25 min. So it wasn't too bad and the nurse was really nice throughout the whole test! I don't know all the test they run while sitting/standing but I know they do send some blood for catecholamines.The second test they did today was the Autonomic Function Test. They monitor your heart rate and blood pressure continuously. They then will have you hyperventilate, do deep breathing, blow against resistance, hand grip, and place your hand in ice water. After that, they will measure your cardiac output and then do a 10 min tilt. At 5 minutes of the tilt test they will measure your cardiac output again. (Note - these tests that I am mentioning are all part of a study so if any of you decide to go down what test they do on you could be different) Quote Link to comment Share on other sites More sharing options...
looneymom Posted January 8, 2014 Report Share Posted January 8, 2014 Hang in there! Hope you are able to sleep tonight. Thanks for posting.Rachel Quote Link to comment Share on other sites More sharing options...
upright Posted January 8, 2014 Report Share Posted January 8, 2014 lulusoccer - Thank you so much for posting this info. It's very helpful. Please continue to keep us updated! Quote Link to comment Share on other sites More sharing options...
CarrieJessica Posted January 8, 2014 Report Share Posted January 8, 2014 So glad you are surrounded by medical professionals who understand POTs. Keep posting Quote Link to comment Share on other sites More sharing options...
Freaked Posted January 8, 2014 Report Share Posted January 8, 2014 That sounds great! I wish there was research in my country I could get involved in. I'm sure they'll find some useful information! Quote Link to comment Share on other sites More sharing options...
Suthrngal Posted January 8, 2014 Report Share Posted January 8, 2014 Keep it coming. Great info! Quote Link to comment Share on other sites More sharing options...
lulusoccer Posted January 10, 2014 Author Report Share Posted January 10, 2014 Day 3: This morning they did some more testing! They take out your IV everyday so you can move around and such, so today they put another one in around 6:30. Then at 7:30 I had quite a few test all at once. They drew some more blood for an Angiotensin II study and for the total blood volume study. Another guy also came in and does total body composition with electrodes on your feet and hands. While he is doing that another doctor came in to inject the radioactive solution for the total blood volume test. More blood samples were taken at certain intervals after the injection while I was lying down. Then after the body composition was done, I had another 30 min posture study but this time they were drawing blood for Angiotensin II. I was able to stand for 20 min today (I didn't have to sit back down). Then they draw more blood standing. (My nurse said most people don't actually make it to 30 min anyway!). While I was laying down and they were doing the initial part of these tests I was able to speak with the doctor also and ask him any questions I wanted related to POTs. So it was nice hearing his opinion. Also, I've been able to meet a few other POTs patients while I've been here which has been amazing! I've never met any before so it's been really nice! Quote Link to comment Share on other sites More sharing options...
lulusoccer Posted January 10, 2014 Author Report Share Posted January 10, 2014 Day 4:Today has been an easy day =) I have to wear a 24 hr holter monitor with BP cuff and that was put on this morning. The BP cuff inflates every 30 min while awake and every hr at night. I also am recording all my position changes, walking..ect.. and the times. I also got some of the testing back such as the total blood volume test which showed I had an 18-20% deficit in TBV which is nice to know. I did suspect though that it would be low. They also are still doing the orthostatic vitals before each meal and at bedtime. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 10, 2014 Report Share Posted January 10, 2014 Keep them coming. Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted January 10, 2014 Report Share Posted January 10, 2014 Wow. Looking forward to tomorrow! Quote Link to comment Share on other sites More sharing options...
lulusoccer Posted January 11, 2014 Author Report Share Posted January 11, 2014 Today was my last day. They took of the Holter Monitor and then gave me a Liter of Normal Saline prior to being discharged! They gave me written discharge instructions and faxed everything to my primary care physician. They were able to fax one of my prescriptions in and then hopefully my primary can take over. It was a very beneficial trip for me, especially since I hadn't seen any autonomic specialist since being diagnosed! If you have already had many of those tests done you may not find it as helpful but it would still be helpful to the researchers! They are all very nice and I had opportunities to ask questions. I was going to have a QSART test done but due to some time restraints on the person who does them, I wasn't able to get that one, but maybe if I go back I can. Soo..Overall, I would recommend Vanderbilt Research for anyone with POTs! I will say they do recommend a lot of the first line drug treatment options, so if you are somebody who those don't work really well on, I guess it may not be as helpful to you. But hopefully if you go, you too will have a good experience and gain some knowledge as well as help further POTs research...which we all know is needed!! Quote Link to comment Share on other sites More sharing options...
upright Posted January 11, 2014 Report Share Posted January 11, 2014 lulusoccer, thank you so much for posting all of this great info!What do you feel were the most important things you learned about your illness? Quote Link to comment Share on other sites More sharing options...
upright Posted January 11, 2014 Report Share Posted January 11, 2014 Also, how long did it take from the time you submitted your application to the time you went to the clinic? Just wondering how long the entire process takes...Thanks again! Quote Link to comment Share on other sites More sharing options...
lulusoccer Posted January 12, 2014 Author Report Share Posted January 12, 2014 I submitted my application at the end of October and was able to go in January. So I only had to wait about 2 months. But I also had all my information ready for them (Such as tilt table results, lab results..ect..) I had scanned them into my computer and when they asked for them sent it by e-mail. I had already done a ton of research on my own about POTs, but in terms of learning about my illness I did learn that I have hypovolemic POTs, which I did not know before. I also learned that they really recommend a low dose beta blocker such as 10mg propranolol (up to 4x/day) for treatment. So they were able to start me on that. They gave me exactly how much salt they wanted me to consume daily which is 8-10 gms and that I should add about 3tsp of salt in a little like plastic bag daily and take it with me to add it on foods during the day because that will get me about 6gms. I was able to ask a lot of questions. They actually do not really recommend a lot of autoimmune testing to be done, at least not at the moment, nor do they necessarily recommend the Vit B12 test be done. They said it can, but actually most POTs patients will have a normal Vit B12. (if it's low they said it's an easy fix). They mentioned the new study that came out about Vit B12 in adolescents with POTs and they said if you look at who did the research it was a group of people who really advocate Vit B12. I asked about being tested for Lyme disease and they said I could be, but that to only get treatment for it if the titers came back really high, not if they were just partially positive. They also gave me Levine's Exercise protocol to read and that was very interesting and that I should be exercising 5 days a week if I did that and I calculated what my HR should be during exercise using his protocol. Quote Link to comment Share on other sites More sharing options...
lulusoccer Posted January 12, 2014 Author Report Share Posted January 12, 2014 I don't have the results yet for the catecholamine's that they drew and I can get those in about a month they said. So I may get some more results later as well. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted January 12, 2014 Report Share Posted January 12, 2014 Thanks, Lulusoccer, for taking the time to post all this!I have a question. Did they explain why your volume is low? I know they've found that over the years in many POTS patients, and the usual recommendation is salt and fluids, plus Florinef when needed. But, I was wondering if they've come any closer to figuring out WHY a lot of POTS patients are hypovolemic?Can I ask how they specifically measured the blood volume? I would love to know how low I am, but not sure what the accurate test is. Quote Link to comment Share on other sites More sharing options...
lulusoccer Posted January 12, 2014 Author Report Share Posted January 12, 2014 sue1234 - They are still doing more research as to why many POTs patients have low blood volume. They suspect it has to do with the renin-angiotensin-aldosterone system (Involves the kidneys) that is supposed to help regulate blood volume. They don't know yet though where the problem is and/or why it isn't working properly. They measure your blood volume with a nuclear medicine test. They take some blood out and then inject you with a radioactive isotope. In my case they used Volumex (HSA I-131) and then blood samples were drawn afterwards at specific times. Also to help protect your thyroid they will have you take Lugol's twice a day before, the day of, and the day after as well. Quote Link to comment Share on other sites More sharing options...
looneymom Posted January 12, 2014 Report Share Posted January 12, 2014 What a great experience! Sounds like you are satisfied with the knowledge that you gain. Please keep posting and let us know how it goes with your new treatment plan.Rachel Quote Link to comment Share on other sites More sharing options...
sue1234 Posted January 13, 2014 Report Share Posted January 13, 2014 Thanks, lulu! Quote Link to comment Share on other sites More sharing options...
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