Saw a Hematologist today....

[lalalisa]

Hello everyone!

I saw a hematologist today who I was hoping was going to test me for low blood volume and then hopefully look into treatments such as Procrit.

Although he thought the bv issue was valid he said that the "old" form of bv testing (the kind where they draw blood, inject you, then draw more blood) is just not accurate. I presented him with an article about a new way of testing (the BVA-100 semi-automated bv analyzer). He went on to say that he didn't know about this method but would be willing to send me to Vanderbilt or somewhere to look into it. (the article I presented him with is from the Dysautonomia News from this Summer)

I left frustrated/saddened today. I guess it's just hard for me to understand that in a city with about 10 hospitals and a couple of medical schools that know one knows how to check my blood volume? (especially a blood Dr. himself)

The reason he wants to have an accurate reading of my bv is so that we can make our case to the insurance company -- otherwise they might not cover the Procrit. (I understand this part)

Does anyone know of this new method of blood volume testing? Has anyone had bv testing done at Vanderbilt? (do you remember how they tested you?)

[lalalisa]

.........I forgot to say

Thanks for any input! I appreciate you!

Lisa

[MightyMouse]

Lisa, it doesn't look like you have any answers yet. Have you considered contacting the labs at the hospitals in your area to see if they offer the test? Or even a little farther away?

Nina

[Sunfish]

lisa -

if the blood test the hematologist says is outdated is the one with the injection of the radioactive marker that i've described previously, that's the one they do at vanderbilt. there are older types that involve injections & drawing blood too so i'm not sure which he's referencing. i've posted it before, but here's the method vanderbilt uses:

"i had my blood volume testing while i was an inpatient research patient at vanderbilt in may. the testing was done by one of the autonomic docs & took a bit longer than an hour. it consisted of laying on a table very still for a bit, having blood taken, having a very small bit of a radioactive isotope injected(the reason a doc has to actually perform the test), continuing to lay very still for an hour, and having blood drawn once more. this "works" b/c the isotope distributes itself evenly throughout the blood and thus the before & after blood draws & the concentration of the isotope in the after blood draw enables them to know how much blood total blood volume there is (along with some additional info re: specific components of the blood). numbers aside, essentially the higher the isotope concentration, the less blood there must have been for it to disperse in. the laying still is to allow natural circulation & thus even distribution of the isotope in the time that they have pre-determined is needed. confused yet? it makes sense but i'm not sure that my explanation does! feel free to ask for clarification.

the test was not problematic for me at all (and my body tends to flip out from tests, weird things being injected, etc.) i had an IV in so that's how they did the blood draws & injection but otherwise i wouldn't have known i was even having a test."

i don't know about any more accurate method (which doesn't mean there isn't one out there) but wouldn't want you looking for something at vandy which is not what you want...

:-)melissa

[lalalisa]

Nina,

Great idea! Thanks for encouraging me to call the labs -- sometimes I forget that some of the phone calls/etc. can be done by me!

Melissa,

Thanks again for your input about the bv test. The BVA-100 test sounds like what you had done. (It's hard to tell though!) I have a website where they describe and show pictures of this new test (http://www.daxor.com/) I'm thinking I might call the testing center at Vanderbilt to confirm this.

Thanks again!

Lisa

[Sunfish]

lisa -

i guess i forgot to mention the actual name of the test, but it is/was the daxor method, so this may answer your question.

:-)melissa

[lalalisa]

Melissa,

Thanks for answering my question as far as Vanderbilt. That's encouraging that I at least know they use this up to date method. Hmm, now I need to see if anyone in Louisville has it. If not - I guess I may be off to Vandy for some help.

I appreciate your help on this issue!

Lisa

[steph37822]

oops

[lalalisa]

Thanks for the feedback!

Steph,

Yes youre correct - this is really an insurance issue. Thanks for letting me know that some insurance companies don't have problems with covering Procrit for this use. I'll check on that! Also, how does Procrit help you? (what difference does it make in your day to day life?)

Since the time I started this post I've found out that:

**only one hospital in KY does bv testing (this is considered the older method by my dr.).

**Vanderbilt does use the latest method.

**Also, my insurance will cover tests done at Vanderbilt! So most likely I'll be heading to Nashville in the next few months.

You guys are great, thanks again!

Lisa

[steph37822]

oops

[lalalisa]

Steph -

Thanks for your response! I know youre not trying to sell Procrit.....but maybe you should! They should put you on their commercial!

I am really excited to hopefuly try this med. What an encouragement to hear how well it has worked for you.

Thanks again,

Lisa

[Lukkychrm42]

What Melissa said.

Aww man that test- I felt like cold water was running down my arm (the outside), because of all that saline, it gave me chills.

I'm keeping my fingers crossed that my insurance will cover Procrit when I get back to the States!

[Sunfish]

lisa -

just wanted to say congrats on all of the info-collecting you were able to do....i know how much time & energy that can take. thanks for reporting back & let us know how things progress.

good luck,

melissa

[lalalisa]

I found out that Vanderbilt won't give me the bv test unless I'm a part of the research study.

Now I have to decide if I want to be a part of this. I'm pretty nervous about being in the hospital this long and how long it would take me to recover!!

Lisa

[Sunfish]

lisa -

sorry about the news from vanderbilt as i know it's not what you were hoping for.

i've written a lot about my vandy experience but let me know if there's anything else that would be helpful as you're having to make the decision. i can understand where you're coming from as i filled out the paperwork for research years ago but didn't submit it then as i wasn't able to "see" myself going for so long, going off meds & having to potentially recover after, etc. this year my decision to go felt like less of a decision b/c i was doing SO poorly that it felt like nothing could make things much worse.

just one thought...you could submit your info as it takes awhile to go through the process & then if you were accepted you could decide then. if you really just want the one test & don't have your heart in the whole process of the two week stay/evaluation/treatment plan it would potentially be a pretty tough thing to do as it's pretty intense...but of course you never know what good may come out of it too, so i can see it from either angle.

another is looking into whether your insurance would pay for procrit without the testing to "back it up." i know that some have/do for folks.

good luck with the decision & let me know if i can help in any way...

melissa

[lalalisa]

Melissa,

Thanks for the encouragement. It is helpful for me to know that you made it through the Vanderbilt Experience!

I think I will apply for the research study -- with the understanding that I can always decline.

Thanks for all of your input. I did look into my insurance covering the Procrit and I believe they are going to (which is great!). Next I need to check to see if a dr. will prescribe it to me without the test.

Thanks again,

Lisa