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Back from Cleveland Clinic


LisaColumbus
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Hi all,

I had my first appointment yesterday with Dr Fouad at the Cleveland Clinic. I have to say, I am very impressed. They really seem to know their stuff :rolleyes: I spent about an hour and a half with the doctor, then had a tilt test then spent another half hour with the doctor. I have to go back Friday for more testing. I am supposed to a Blood Volume with hemodynamics test. I was too tired yesterday to ask too many questions about this test. All I know is that I get injected with iodine for one test and injected with tc99m for the other test. Does anyone know what all is involved with this test and is it painful? I am a big baby :wacko:

I have googled the heck out of "Blood Volume Hemodynamic testing" but can't seem to find what the actual procedure entails.

Thanks

Lisa

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Guest tearose

Lisa how super that you are pleased with everything so far...and impressed!

I don't know about that test. You sound like you are in good hands...why don't you call and ask someone? Go ahead, pick up the phone and call! The test is Friday so I bet you'll be very educated by then. Someone here plus the lab office...

Katherine, maybe knowing if you have low blood volume and no other contraindications makes it possible for one to try the procrit/epogen injections. Just a speculation...

continued good luck wishes Lisa, tearose

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I was tested for hypovolume to see if that is the cause of your POTS. As I understood it at the time is that if you are hypovolume then that may be the primary reason you have POTS. In that case POTS is a secondary condition-(I think) meaning that what ever is causing you to be hypovolume is causing the POTS or that the hypovolume is causing you to have POTS - not the POTS causing you to be hypovolume. Because hypovolume is not a symptom of POTS but can be a cause of POTS>

I was not hypovolume as well as I did not have blood pooling in my legs. That means that i have my POTS is a primary POTS. Anyways, it is explained by the dsyautonomic book by Dr. Goldstein.

Hope i did not confuse you anymore because i think i confused myself.

Kathleen

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I had the blood volume test done a few years ago at CCF. My memory is not great but I do not remember it being painful. I have very poor venous access and they had some trouble getting a good vein to put the access in. They inject you with the T99 and wait awile and then draw some blood. They also take pictures of your heart at different times. It is a little uncomfortable because you have to lie still getting injected and then having blood taken out all while there is a large machine over top taking the pictures of your heart. I felt like I couldn't move.

My test seems like it took most of the day. It was a long day, but mostly you just lie there. There were several rounds of injections and blood draws and pictures of the heart. The last injection i had to sit up to get the heart pictures so they could see the difference from lying down to sitting.

They told me to drink as much water and gatorade as I could the night before and the morning of the test so they could get a good vein to use. I had to stop in the middle of the test to use the restroom after drinking so much. That took some time to get unhooked from everything just to go pee. I wonder about drinking all that excess fluid - if it interferred with the test. My results showed mild hypovolemia. I wonder if it would have been worse had I not drank so much, but I did what they said to do.

They tried me on Florinef to increase blood volume, but it did not help my symptoms. Dr Grubb is considering procrit for me - but he never said it was because of low blood volume. He told me that procrit would be one of his first choices for POTS if it weren't so expensive and it was easier to take and monitor.

Hope that helps

Good Luck - it is not painful - just boring.

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I had the blood volume with hemodynamics done at Cleveland also w/ Dr. Fouad. I agree with Dizzy it is not painful but definately boring. I remembered that it took awhile. The nurses who perform the test are great. I do remember feeling very dizzy once we were done and I stood up, just the wonderful POTS I guess. Good Luck with the test.

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Guest tearose

Katherine since you asked and I fall into that group: I have POTS from denervation (in legs and splancnic) not from low blood volume. I think there are several ways of having our POTS some are "abnormal reactions to normal conditions" and some are "normal reactions to abnormal conditions". :(

The way I best understood was from the NDRF book.

Hi Lisa, did you call and ask about your test? Friday will be here soon, hang in there!

tearose

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Thanks steph, Kathleen and tearose for your replies to my question! So does this mean that in your case (Kathleen and tearose) salt and extra fluids don't affect your symptoms--since (I thought) salt and extra fluids were recommended b/c it increases blood volume? If you have POTS, but don't have low blood volume, then it seems the extra salt and fluids wouldn't help/might even be detrimental? I don't mean to be nosey, but I am very curious. I realize from continuing to participate in this forum that I still have much to learn about this condition!

Katherine

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Guest tearose

Hope all goes well today Lisa! We'll send you good thoughts and courage! :)

Katherine, maybe someone can explain how it is works, but the salt and fluids are still useful in my case too! I still get low blood pressure. Both increased salt and increased fluids raise blood pressure. I actually(personally) respond very well to compression. I need both the pantyhose and abdominal compression.

take care, tearose

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Hope all goes well today Lisa!  We'll send you good thoughts and courage!  :)

Katherine, maybe someone can explain how it is works, but the salt and fluids are still useful in my case too!  I still get low blood pressure.  Both increased salt and increased fluids raise blood pressure.  I actually(personally) respond very well to compression.  I need both the pantyhose and abdominal compression. 

take care,  tearose

I'm back, after having the Blood Volume with Hemodynamics test. It isn't a test I would look forward to having repeated (I'm a needle phobic) but it wasn't THAT bad. For those who have not had this test done. They start by having you lay on a table, then they start an IV. From his IV they will draw the blood samples and make the injections. The first injection was a type of Iodine (used for the Blood Volume portion of the test) the iodine doesn't hurt at all. You remain lying on the table and they take a few vials of blood every four minutes or so. They took 40 tubes of blood. The worst part of this test is that my body decided not to cooperate after the 3rd vial, it took ALOT of coaxing to get the rest of this blood samples which can be a bit uncomfortable. After this test we moved on to the hemodymics test. In this test you are injected with a radioactive material, which they are able to follow thru a series of pictures. they track it as it goes to your heart, to your lungs and then back to your heart. They break this test into three different segments, with each segment you get an injection of the radioactive stuff. The injections stung a bit because they have to inject them really fast. Fot the first two segments they take pictures as you are laying down, they take 2 pictures per second. The 3rd segment they sit you straight up very quickly with your legs straight out in front of you, give you another injection then take more pics. After a while they lower the foot of the bed and let your legs down then take more pics.

Unfortunately I won't get the results of these tests until next week, I am very curious as to what they will show. I did find out that based on the tilt test I am classified as "Severe Pots" but the doctor wants to wait on results from this latest test before starting any meds.

Lisa

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Guest tearose

Thank you for that explanation Lisa. What an ordeal! You are hopefully feeling better now. I would have had trouble enduring that!

Rest up. I hope you get answers and improvement from what they learn from this test!

warm regards, tearose

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:) I too have severe pots and must have sodiun and h2o. Ialso get IV's reguarly. Additionally I am on m,any drugs , they do help. The greatest frustration is that this is a process, and things change.

P.S> No one ever told me that I could ask for my resuls when I left. Bummer

Miriam

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Lisa, what were your tilt results? You said they indicated "severe pots" and I'm wondering what that means.

Take care,

m

Hi Merrill, I was stuck laying on the table and didn't actually get to read the report. My mom was in the room with me and was looking at the report that was on the computer screen. She said that it showed the various BP's and heartrates as well as symptoms and notations about EKG changes. At the bottom of the page it said Impression: Severe POTS. When I get the report this week I'll post the readings and see if that helps.

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Hi Everyone:

I am so happy this topic was started. I too am going to see Dr. Fouad at the Clinic this Tuesday.

Thanks.

Kristen

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