Testing Frustration

[Dustbunni]

Just when I think I can't lose any more faith in our medical system, they prove me wrong again. Someone please explain to me how it makes to sense to expect a patient to locate specialty labs AND their own supplies for blood work?!

My geneticist gave me 3 blood testing orders when I saw her. One of them was a wonderful printout of about a dozen tests, each labeled with a Quest and Labcorp test code. Super easy. I took it in and the lab knew what to do with it. Of course, the lab still mishandled 2 of the specimens and then failed to notify me until a month later when we started inquiring as to why the results were not in yet. One of the tests they mishandled was the pyruvic acid test. They redrew it, but refused to redo the lactic acid test needed for the same-specimen comparison ratio unless they had new orders - which I could not get in time because you all know how long it takes for doctors to issue these things by phone. Thus, I assume this test is a waste and will need redone after the holidays.

The other 2 orders the geneticist gave me included only the names of the conditions the tests were for and a hint as to which lab might run one of them. It was left up to me to figure out where and how to get these specialty tests. No local doctor, nurse, or lab I spoke with (and I spoke with A LOT of them) even recognized the conditions they were testing for. Not a huge confidence booster... Anyway, eventually I located an out-of-state lab who could do both the tests. They offered a couple different tests for the same conditions though, so I had to wait for the geneticist to fill out their specific requisition form. Once I knew the specific tests, I had to look up how the specimens were to be handled as my own doctor's office wouldn't even look this up. Then I find out a sodium heparin (green top) blood collection tube was needed - and no one except the largest Quest and Labcorp labs have them in my area. Neither Quest nor Labcorp would draw my blood since the tests were not ordered (or offered) through them. My doctor's office and the smaller labs were willing to draw my blood and let me leave with it to ship it overnight to the lab (many apparently won't), but ONLY if I located a green tube for them.

Who in their right mind expects the patient to locate their own blood collection tube?! It's not like I can walk into Walgreens and pick one up off the shelf! Many, many more phone calls later and I couldn't get a green tube to save my life. After hours of calls and research, my options were to order a pack of 100 tubes so I could get ONE for my blood work or wait for an out-of-state relative to call in favors for me and ship one. Talk about unnecessary stress. Fortunately, a person who has requested never to be named for fear of losing her job, slipped me a green tube right as I was about to give up.

I know this is not a "major" incident, but it is so frustrating to once again have to do all the legwork for my own healthcare. Our medical system is not set up for patients to handle these things which makes it all the more difficult when doctors force you to do them on your own.

Anyone else have to get their own testing supplies before?

[Katybug]

I am so sorry. This all seems like the height of unprofessionalism to me. Your doctor should be able to guide you if they are orfering tezts that are not readily available and the lab that does the testing should have sent you supplies needed to conduct the test even if they expected you to pay for them up front before shipping them to you. Ridiculous!! And God love the person who helped you out!!

[Dustbunni]

The lab would have sent supplies IF one of my doctors would register with them and then request it. They would not send supplies to individuals. Seeing as how I couldn't even get my docs to locate the test/lab or acquire a green tube on their own, I figured asking them to register would be like asking the Easter Bunny to deliver Christmas presents - all just a nice fairy tale. Regardless, I might have tried anyway if I wasn't in a rush to have the tests done before the end of the year and my insurance out-of-pocket resets.

[E Soskis]

Good Grief! What will we have to do next - draw our own blood as well?.....wait....I've had to do that already.....Welcome to our new and "improved" healthcare system!

[Dustbunni]

E Soskis, why did you have to draw your own blood? HOW did you draw your own blood?

It's funny you mention that though because I'm contemplating asking my primary next time I see him if he'll let me take my own blood for routine tests. I have a PowerPort. It can handle blood draws and is already accessed every day. In fact, I sort of draw my own blood each morning before starting my infusion to check for blood return. I figure I could buy the access syringes and take my own flushing supplies to the doctor's office. They can provide the tubes and "witness" the blood draw and then send it out or give me the orders to drop it off at Quest or Labcorp..... It's a looooooooong shot. I figure it can't hurt to ask, but it will hurt a lot if I don't. My poor arm veins are ready to raise the white flag of surrender. LOL.

[Lethargic Smiles]

That is insane! I don't know how I'd feel about continuing with a doctor who put me through all of that.

[kitt]

It does sound crazy! I've found Quest to be difficult with a few tests including the standing catecholamine tests.

Instead I called my insurance co and learned that I could go to the hospital lab for the tests I needed. A whole different level of understanding, care and concern over Quest Labs. Also, the hospital allowed to pick up a copy of the test results as well as sending them to my M.D.

Maybe they can help you? I sure hope so! Have you asked your geneticist what lab usually performs these tests?

Good luck. I've never had to think which color code the top of the vial had to be. That alone is too much to expect a patient to know. The rest of the story is amazing. Thank goodness for the woman who sent you a single vial!

Best,

K

[Dustbunni]

Fortunately for me, my husband has a job that allows him to work from home except for occasional trips out-of-state to his main office. Unfortunately, this also means our insurance is out-of-state. While our local hospital will accept it for the ER and out-patient procedures, for some reason their lab will not accept my insurance. It makes little sense, but they won't let me use their lab because of that.

I won't lie, my primary doctor is not my dream physician. He's not the brightest or most ambitious man. However, he is the only primary doctor we have found who cares enough about my quality of life to take chances on improving it. Also, he doesn't have an ego problem when it comes to taking advice from specialists. He is the one who took the chance to let me trial daily IV saline and then ordered me the chest port when it worked. This was not easy for him. In fact, I wanted to have my chest port surgery at St. Thomas in Nashville. However, my primary already received enough "concern" by other doctors when we trialed it that he requested we use a surgeon whom he knew personally to minimize the amount of push-back he received. Years ago I lost a good primary doctor because a mean and ignorant ER doc disagreed with him and created such a ruckus that the primary wouldn't see me again. So while there are issues with my current primary doctor, I appreciate that he cares enough to stick his neck out for me. And, of course, I really don't want to risk losing my daily IV saline orders for any amount of time.

[looneymom]

Hang in there dustbunnie. I came home with some test kits for my son from our last new doctor's visit. So I'm also trying to figure our how to get a blood test done. Getting testing done should not have to be this complicated.

Rachel