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Back from trip (blood volume test)


lalalisa
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Hello!

I wanted to keep you updated on how my trip went and also let you know the results. I flew to the Baltimore area this past week in order to get a blood volume test. (My Dr. specifically wanted me to have the Daxor BVA-100 because it's so accurate)

I showed up on Wednesday for my test (after confirming over the phone on Monday) and when I arrived a technician came out to meet me in the waiting room and proceeded to tell me that their had been a mix-up. The front desk hadn't communicated with the tech's therefore the radioactive dye hadn't been ordered!! Tears began welling up in my eyes -- I had flown half-way across the country and gotten up early and driven 2 hours to the hospital (my mom actually drove) -- I was extremely disappointed! I told him the situation and he ended up arranging for the dye to be "overnighted" from New York City to DC and I would have to come back the next day for the test. I was really overwhelmed and wondered if I'd even have the energy to travel once again the following day -- but I agreed to it, what else could I do??

Well, the test was performed as planned the following day. (The technician ended up being really great) Everything went smoothly except that my blood pressure went so low at one point that I was barely conscious for a couple of minutes. They injected a dye to tag the red blood cells then drew blood about every 8-10 minutes for about 1 and 1/2 hours. (they seemed to take a lot of blood - my mom said their were about a dozen vials) They checked my blood pressure at the end of the test and it was too low so they wouldn't let me go. After 30 minutes, 10 mg of Midodrine and lots of prayers it finally came up enough for them to let me go. They directed me to go immediately to the cafeteria to eat and drink.

The results were faxed to my dr's the next day. It turns out that all of this travelling and pain ended up being profitable for me. I am definitely hypovolemic. I have 35% less red blood cells than I should have and 20% overall less blood volume. My dr thinks I'm a good candidate for Procrit injections. He thinks it may help some of my symptoms (which is definitely the best news!).

Next up, getting the insurance co. to cover the injections.

Thanks for all of your support. I would definitely encourage anyone who is able to look into this test. For me I think it's a good thing to have on paper a reason for many of my symptoms. (sometimes I feel like it's just up to the dr.'s to believe me that I'm telling the truth about how I feel - especially without lots of true paper evidence)

Feel free to ask any questions you might have. i'm pretty tired so I hope this "diary" all makes sense!

Have a good day, :)

Lisa

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Hi Linda,

Thanks for keeping us updated.

I am really glad that your trip and test was worthwhile. I can relate to your disappointment when you heard that they did have the product to test you. I am glad that they were understanding and helpful.

Good luck with Procrit.

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Thanks for your replies.

Have any of you had this test done?

Lisa

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hi lisa -

i'm glad to hear that your trip - in the end - went well & gave you some answers. the craziness of medical entities never ceases to amaze me (i.e. them not having the tracer) and i am SO glad that it was able to get worked out. not that it wasn't still an extra hassle & stressor for you, but better than coming home without the test being done at all. geesh.

like you know, i've had the test done (at vandy) though they didn't do near as many blood draws as it sounds like you had so now i'm curious. it was the daxor method but perhaps a different protocal for it. hmmm....i'm only a bit hypovolemic (though this weekend my body seems to think otherwise...my BP has been super low despite my drinking TONS & salting up...grrr) and my "cause" is thought to be more neuropathic, but who knows. i still always get some relief from increased blood volume (aka IV fluids) and i'm going to be starting procrit as soon as the logistics get ironed out. i'm also a bit anemic which may factor in.

re: the insurance issue, i was pleasantly surprised (er...shocked) that my regular insurance doesn't require any type of prior authorization, pre-approval, etc. for the shots. with one caveat. they have to be in the doc's office. so i'm waiting for dr. grubb to get in touch with my docs here in cleveland to set it up. to do the shots myself at home i have to use my Rx insurance & they DO require prior approval, so i'm expecting that to be tougher since dysautonomia is an "off label" use. i'm hoping to pursue that with the slight chance that i'll be pleasantly surprised but likely will have to appeal, etc. but in the meantime can start them at the doc's office. we'll have to keep each other apprised of how it's going.

:rolleyes: melissa

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Lisa,

Thank you for sharing your story! You 'did good' on the explaining for being so tired! :rolleyes:

What an ordeal! Thank goodness that you at least got the test done. The whole trip sounds absolutely draining and exhausting...but I am grateful that you got some answers.

I really hope the Procrit will help you regain some quality of life...

As for the test, I have not had it done...but I did try Procrit and sometimes do IVs...but don't seen to respond much to either of them. Maybe a sign that hypovolemia isn't a problem for me????? Hmmmm....

I'm in way over my head on all this medical stuff! It would certainly help if I could read for more than two minutes at a time, I could keep up a bit better! Yikes!

Rest up...

Oh, I was able to get Procrit covered no problem...but as you know Steph has fought soooo hard for hers! And she needs it way more than I ever did....I wanted so much to just give her mine somehow!

Emily

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Melissa,

Yes, it looks like we'll be going through this process together - please keep me posted! You mentioned wondering if the tests were a bit different...it's interesting that they were both Daxor...the only thing I can think of is that the tech told me they just got a new machine from Daxor (the week before). Interesting.

Emily, thanks for your reply... Do you remember the dosage you were on? Or how often you were given the shots. How long did you take them?

Thanks again,

Lisa

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Lisa,

I appreciate the time you took to post. Let us know the final outcome!

I am interested in this "low blood volume" idea. I wonder if this has to do with dysautonomia affecting the endocrine which affects the blood volume? Not that it would change things, but I guess we can assume that once you have low volume, you'll always have it?

I have so many questions and so few answers. I just keep picturing everyone getting "band-aids" to fix this and that body part, when they don't really know if the body system is ALWAYS malfunctioning or SOMETIMES malfunctioning or WHY it is malfunctioning.

I say this because, I'm definitely different on different days. How can they give a medication to fix all the variations unless they know what they are doing? One day, I could be weak as a kitten and the next day I could be semi-normal. Even with my digestion, I could have a few weeks where I'm pretty much okay, and then, BAM, weeks of stomach aches, nausea, pain, etc.

Oh, the frustration of not knowing! And the variation of it all. It's mind-boggling!

I suppose that now that you have Hypovolemia as a diagnosis, they feel more comfortable in treating.

What are YOUR symptoms of hypovolemia (if that is a valid question)? What made your doctor suspicious, or was the test just a prelude to giving Procrit? Why was Procrit suggested in the first place for you?

Thanks for any answers. I'm always searching for any tidbit of new info.

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Thanks again for your replies.

Futurehope,

I have many of the same questions. For example, what part of your body is in charge of how much blood we make for our bodies? Is this an autonomic nervous system issue or something else? I also wonder if I will now always have low blood volume or if my POTS/CFS are resolved if this will also resolve.

For my case I found out that some on this forum were being helped by Procrit. So I asked my dr. if he'd be interested in prescribing it for me and he decided to order a blood volume test. (I found it a good idea because I didn't want to be on Procrit unless it was a definite need) I didn't really have any symptoms that really stood out. I deal with lots of fatigue and weakness and then the "normal" POTS symptoms (tachycardia, low bp, etc.). The only thing that I noticed was that when I wake up from a nap I have lines/indentations from my pillow on my face - this is pretty typical - but they last for a really long time (about an hour) - I think this may have to do with low blood volume, not sure though.

I'm not sure If I've answered any of your questions. I seem to have a lot of the same questions as you.

Let us know if you end up looking into this test for yourself. Hope you have a good day,

Lisa

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I'm not sure if they tested my red blood cell count before the test but they did test my hematocrit. My hem. levels were actually high -- I wanted to mention this because some people think if their hematocrit levels are high than their blood levels should be fine. (this was obviously not the case for me)

Thanks,

Lisa

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Thanks for your posts and support,

Lisa

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You mean when other people wake up with lines on their face, they don't last for several hours?? I thought everyone's did.. eerrr... actually I had never really thought about it before. I often have them and they last for hours.

Is this really a sign of low blood volume? I mean, I have been aware that I have blood volume, so I'm not surprised... but I had just never considered the face-lines as a "symptom." Interesting...

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Rachel,

I should probably say that this is just my theory (about the lines on my face lasting sooooo long!)

I wonder if we could find out if this is true a sign of low blood volume? :)

Happy thanksgiving!

Lisa

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