Pianist Posted February 1, 2007 Report Share Posted February 1, 2007 I'm trying to find a place that does accurate blood volume tests. I called around a few local hospitals, etc. I got transferred numerous times and mostly confused the technicians. I live in Virginia. Does anyone know where I can find a listing of such places?Thanks! Quote Link to comment Share on other sites More sharing options...
dizzygirl Posted February 1, 2007 Report Share Posted February 1, 2007 the cleveland clinic does blood volume testing.. im going there in less then 2 weeks to have one done...Um I believe that the University of Pennsylvania (located in philadelphia)they do blood volume testing as well.. a friend of mine had one done there a few months agodr.fouad at the cleveland clinic ordered my test...good luck to you Quote Link to comment Share on other sites More sharing options...
AJVDK Posted February 1, 2007 Report Share Posted February 1, 2007 Dr. Fouad at the Ceveland Clinic did my test as well. Quote Link to comment Share on other sites More sharing options...
lalalisa Posted February 2, 2007 Report Share Posted February 2, 2007 Hello!I'm from VA as well. We live in KY now but I ended up flying back east for my blood volume test. A year and 1/2 ago I asked my PCP if I could get my blood volume checked with hopes that if it was low I could look into taking Procrit. He sent me to a hematologist who told me that his method for Blood Volume analysis was just not accurate enough (this was a Tag Method). I then searched for a method that he would deem "worthy" and I found the latest and most accurate Blood Volume test available. (After reading about it he agreed and ordered it for me) The Daxor corporation has a semi-automated blood volume analyzer that's being introduced in select hospitals across the country. I ended up flying out to Washington DC to get my test performed at the Washington Hospital Center as there aren't any hospitals in KY or anywhere close to here who have this test yet. Here are some links...http://daxor.com/http://www.daxor.com/bva100.htmlhttp://www.whcenter.org/Another member of the forum has gotten this test performed at WHC as well. I'd be glad to answer any questions.Hope this helps,Lisa Quote Link to comment Share on other sites More sharing options...
Pianist Posted February 4, 2007 Author Report Share Posted February 4, 2007 Do you guys know the actual names of the different tests (or the names of the methods)?Thanks,Pianist Quote Link to comment Share on other sites More sharing options...
Pianist Posted February 9, 2007 Author Report Share Posted February 9, 2007 I want to get the BVA-100 test done. My wife tried contacting Washington Hospital Center today and no one knew what she was talking about. Do you have a department name or contact info. I called Daxor and they said that their machine is definitely there and Georgetown as well. Any help would be GREATLY appreciated! Quote Link to comment Share on other sites More sharing options...
lalalisa Posted February 9, 2007 Report Share Posted February 9, 2007 Hello,Ask for the Nuclear Medicine department. The phone # for the main nuclear medicine department is: 202-877-6066 The receptionist probably won't know the name of the machine/method (daxor bva-100) but should know what a total blood volume test is. Let me know if you still can't reach them.Hope this helps,Lisa Quote Link to comment Share on other sites More sharing options...
Pianist Posted February 10, 2007 Author Report Share Posted February 10, 2007 Thank you so much. My wife contacted them on Friday, but we haven't heard back yet. Quote Link to comment Share on other sites More sharing options...
lalalisa Posted February 13, 2007 Report Share Posted February 13, 2007 Great! Let me know if you end up going and keep us posted as to what you find out.Take care,Lisa Quote Link to comment Share on other sites More sharing options...
Pianist Posted February 15, 2007 Author Report Share Posted February 15, 2007 They said they need a diagnosis from the doctor, and it can't be "to rule something out" for the insurance to cover it. They said the doctor has to be doing the test based on something he knows I have. Very frustrating because the doctors know something major is going on, but they don't know what it is. Is this what you went through? I'm trying to get a ballpark figure of what it would cost (with and without insurance) and am having a difficult time. Do you have an idea of what the ballpark cost would be?BTW something knew has started happening. I had the flu for about 3 weeks, and ever since then I've been waking up with this strange headache, chills, shakes, nausea, horrible dry throat/mouth (with lips stuck to gums) feeling like I'm in shock. It was really bad for about a week, I'd wake up like this 2 hours after I fell asleep (and multiple times after). Several days I felt like I was in shock all day long. A few times it got so bad felt like I was going to die. At those times my blood pressure had gone up to 150/99. I cut down on the water I was drinking (take desmopressin in the morning) and it's subsided somewhat. I was drinking about 3 liters a day, now I'm down to about 1.5. I now wake up at 6am in the morning with these effects. Along with the "dry eye of a 75 year old" which started about a year and half ago, I just don't know how long I can hold on to my job like this (or sanity for that matter). Quote Link to comment Share on other sites More sharing options...
lalalisa Posted February 16, 2007 Report Share Posted February 16, 2007 Hello,I'm sorry to hear that you're having trouble with your insurance covering the procedure. My Dr. wrote out a prescription for me that requested a total blood volume test and I think he just listed my diagnosis as POTS on the bottom. I wonder if your dr. could just write "possible hypovolemia" or something like that. That sounds so silly that your dr. has to list something "he know you have" - especially since that's the entire point of a test....to diagnose! Please hang in here...it was a long road for me just finding a dr. who would order the test. After about 5 months or so I finally found one. I then thought my insurance would be the next obstacle but they were fine with it. I'll try to find the bill from my test. I'm thinking it was around $1500 ?? I'm also sorry to hear that you are SO sick right now! I wanted to ask you if you know for sure that you had the flu? If not you may want to get some blood work taken to rule out infections such as mono, etc. (just a thought!) Hope this helps, Lisa Quote Link to comment Share on other sites More sharing options...
Pianist Posted February 22, 2007 Author Report Share Posted February 22, 2007 Do you mean it was $1500 after insurance? that was the part you paid?So, did they actually tell you what your blood volume was (in liters, etc)?P.S. I've slowly started to get better over the past few days. I'm still not exactly sure what happened. Quote Link to comment Share on other sites More sharing options...
lalalisa Posted February 23, 2007 Report Share Posted February 23, 2007 Sorry about any confusion! My insurance paid all but about $200. The test told me the % that I was missing. It listed, plasma, red blood cells, and total blood volume and the deficit %. For example....for my individual body I have a 35% deficit in red blood cells. Hope this helps,Lisa Quote Link to comment Share on other sites More sharing options...
Pianist Posted February 23, 2007 Author Report Share Posted February 23, 2007 Did they determine that congentital heart disease was causing the hypovolemia?Also, I was wondering if it's possible for blood volume to fluctuate? This may be worrying to much, but I was wonderingif it's possible that the BVA-100 test will show normal if I go at the wrong time, and then all that time and money was wasted. Quote Link to comment Share on other sites More sharing options...
Pianist Posted February 23, 2007 Author Report Share Posted February 23, 2007 Lisa, I noticed that you aren't taking Florinef and it seems like alot of people on this site are. Did they ever consider this for you? Quote Link to comment Share on other sites More sharing options...
lalalisa Posted February 24, 2007 Report Share Posted February 24, 2007 Hello,POTS seems to be the cause of the hypovolemia. (I had heart surgery as a kid to fix my congenital malformation and my heart works well now) I've also wondered the same about my blood volume fluctuating. I'm guessing it probably does....but I'm also guessing that it doesn't fluctuate very much. Oh, I've tried Florinef twice and I don't seem to respond to it like others on the forum. (It also causes me headaches)Take care,Lisa Quote Link to comment Share on other sites More sharing options...
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