Monthly bloodwork for the transplant waiting list

[MooseMom]

How many of you are on the waiting list but are still pre-dialysis?  Do you get sent a box each month containing a vial which you have to take to your lab and get blood drawn, and then you have to mail it away?  Does the lab charge you a draw fee?  If so, how much is it?

Has anyone explained to you why you have to do this each month?  Here is what I have been told...that each month, your PRA is tested.  Your PRA can increase if you are/get pregnant, you have a transfusion or if you have a transplant (I guess of some other organ besides a kidney).  Well, that is understandable, but does anyone else think this is overkill?  Take me as an example, and I don't think I am unusual.  I am not able to have any more pregnancies.  I have not had a previous transplant.  If I were to get a transfusion, I certainly know to tell my transplant coordinator.  I don't understand what else could affect one's PRA on a monthly basis.  I understand that UNOS wants to be careful, but how much money is being spent on labs that are unnecessary?  How much money is being spent on postage, not to mention the labour it must take to send out all those boxes each month.

I'm charged $40 a pop each month.  That's over $400 a year for something of which I don't understand the purpose.  And this is not discretionary spending.  With the cost of healthcare rising so rapidly, I have to wonder if stuff like this is part of the cause of it.

Anyone have any thoughts?  Thanks.

[KarenInWA]

I've been told about this by my transplant clinic, but so far I have not received anything.  Then again, I've barely been listed a month today! I'm going to take mine in when I get my epo draw, which is once every 2 weeks. I was told that postage is paid on it (I believe - I could be remembering wrong) and was also told it was to keep me up to date with how well I match the cadaver donors. 

I wonder - could you have a local voc-tech school do your draw?  Granted, you'd be their guinea pig, but I wonder if they'd welcome the opportunity?

KarenInWA

[woodsman]

MM i do this each month every month and have been for over 8 months now. I have no charge for this as i went to the dialysis clinic (for my tour) and the nurse there set this all up and had the fed ex package sent to me and then setup with a blood draw place where i live. Call your local dialysis clinic and check it out. I just take the fed-ex baox with me she draws the blood and mails it in for me.

[paris]

I did it for 5 years.  My clinic supplies me with a large box of red top tubes, mailing envelopes (prepaid) and a info sheet to go with it.  They have to have a current sample so when a kidney is available, they can run tests immediately and start to sort out who will be called.   If they didn't have that sample, they would have to call lots of people in everytime a kidney came available.    Like woodsman said, the lab does everything, including mailing.   You can go anywhere that is convenient to you.    I understand the costs, but it really is necessary to keep you active and on top of everything.  Just do it with you normal monthly labs. I hand the stuff to the tech, she does all the other tubes for normal draws, then does the red top for the clinic.     Now, I have to have a purple top tube to send to the clinic every 2 weeks when I get labs done. Again, they give me a 6 month supply at a time.  I am getting to know my tube colors.  LOL   

It is necessary. Can you imagine how frequently you would be called in to the center because they didn't have a current lab draw on hand?  This is an expensive journey, even with good insurance.   I got a bill the other day itemizing the lab costs. It was $1700!!  My share is "only" $95.  New company and we have to get through the deductable. That should take another couple of weeks!!      Wishing you good results all the time.

[MooseMom]

I don't have a dialysis clinic yet because I'm not on D.  My transplant clinic is a 2hr drive away in Chicago.

I'm sure it works differently according where you are, but here, I get a box from Gift of Hope each month with a vial inside.  I don't have to see my neph each month, so I don't normally go to the lab every month, but now I have to.  And because this is not a blood draw requested by my doctor, my insurance won't pay for it.  Hence the $40 charge each month.  I don't have to pay for postage as GOH pays for that.

I did call all of this to the attention of my neph, and he kindly set up a standing order for me with the lab so I don't have to pay anything any longer.

I do wonder, though, why this has to be done each month.  Your blood type doesn't change from month to month.  Your PRA will be affected if you get pregnant, have a transplant or a tranfusion, but how many of us have these things happen to us on a month by month basis?  What EXACTLY changes from month to month that requires a monthly draw?  It's not really that much skin off my nose, but when I think about all of the money that is being spent just on postage, not to mention the labor costs for so many people over so many months, I just don't really understand.

[paris]

The only thing I can say is, you don't want to make that drive everytime there is a cadaver donor.  Your PRA does fluctuate. You need to be tested against every potential kidney.  If things didn't change in your blood levels, you would never need another blood draw. Month to month, those you are tested against will have different results.  Also, they can let you know if other things are going on while you are on the list- wbc, etc.    I wasn't on dialysis either.  If there hadn't been a current blood draw, I would have never been called that day.  Timing is everything.  Because the donor had unusual antibodies, I was called along with other "hard to match".    I can understand why you had to pay at first.  I am glad the neph wrote the order for you.   My monthly lab is written by the docs at the transplant center.  As are the ones now, after transplant.  I suppose you could refuse, but I didn't have a problem with the labs.   At first, my neph kept assuring me my PRA would go down, because the number can move around.    Mine didn't, but the only way to know that is by testing against others.  I didn't know what my PRA was until 5 living donors were tested.  Since my blood was routinely sent to the clinic, they could test it to donors without me going in everytime and test cadaver donors all the time.

I am wordy tonight!  I am on pins and needles waiting for a baby to be born.  The mother was pushing as of 10 minutes ago!  I so wish I was in Oklahoma right now.  Long way from NC. 

[Sax-O-Trix]

I have been doing monthly draws for UNOS for 6 months now.  I go to a lab that is 55 miles away that is affiliated with my transplant hospital (75 miles away).  I have a standing order from my transplant coordinator.  Somehow I was under the impression that either UNOS or a Kidney Transplant oraginization pays for this monthly testing.  I have pretty good insurance and have not seen a bill for this service.  I wonder...

I was told the monthly draws were for crossmatching and PRA testing.  If a kidney becomes available, they need the specimen to do the crossmatching.

[paris]

I ahve been doing monthly draws for UNOS for 6 months now.  I go to a lab that is 55 miles away that is affiliated with my transplant hospital (75 miles away).  I have a standing order from my transplant coordinator.  Somehow I was under the impression that either UNOS or a Kidney Transplant oraginization pays for this monthly testing.  I have pretty good insurance and have not seen a bill for this service.  I wonder...

I was told the monthly draws were for crossmatching and PRA testing.  If a kidney becomes available, they need the specimen to do the crossmatching.

You said it perfectly!    I have been very wordy tonight- waiting for a new baby.  He is here and now I want to see pictures.     Thanks for wording it so well, Sax!

[MooseMom]

UNOS or any "kidney transplant organization" is NOT going to pay for monthly blood draws.  Your insurance company might be picking up the bills.  All I know is that when I go in for my bi-monthly draw as mandated by my neph, my insurance pays because I am having tests done that yield RESULTS.  A monthly blood draw for transplant purposes was not mandated by my neph, but, rather, by Gift of Hope which is NOT a doctor but is a collector of tissue.  But I got around that problem, as I said.

My question STILL is what exactly changes from month to month?  Unless you get pregnant or have a transplant or a transfusion, your PRA will NOT go up.  If anything, it will go down.  Your blood type and tissue don't change from month to month, do they?  So that leaves crossmatching.  Does your blood serum change from month to month?  Since crossmatching is so critical, they are not going to rely on blood you gave maybe three weeks ago...they'll run that test at the last possible moment should a kidney come available, won't they?

So again, why do we need this blood draw every month?  What would substantially and critically be different about my blood today than from this time last month?  Does ANYONE know?  I'm just intellectually curious.  I have understood the purpose of every single hoop I've had to jump through, but I just do not understand this one.  I'm not trying to get out of anything; I've put a lot of time and effort and pain into getting on the list, and I will do what it takes to stay on it, but I just like knowing WHY I am required to do jump through said hoop.

[Sugarlump]

I believe that you can get antibodies from infections or contact with people with infections and that PAST pregnancies can cause antidbodies to be present. And they do fluctuate. To match you on the list with an available kidney thay need an up to date tissue typing/antibodies result.
In the Uk we used to do them bi-monthly. My antibodies to previous kidney suddenley appeared, weren't always there.

[Sax-O-Trix]

MM - My private insurance company does not pay for my monthly UNOS draws...  I don't know what to tell you other than I was told that some other entity through the hospital would be covering the blood draw costs as well as some other pre-transplant testing costs.  When my insurance company pays for anything, they send me a statement to let me know what was charged and what they paid.  I have not received a statement regarding monthly blood draws, but have received statements for everything else that my family has been to the Dr. for in the past 6 months.  I do get charged for the blood work I have done for the neph. every 3 months.  The neph's name is not on my standing order, it is the nurse coordinator (not that should make a difference.)

[MooseMom]

SOT, I've never been charged/billed for the labwork ordered by my neph every 3 month; I guess your private insurance doesn't cover that like mine does?  But the monthly UNOS bloodwork is NOT ordered by my neph, and this is why my ins doesn't cover it.  I understand that, so I approached the neph's nurse and whined about the cost (the transplant coordinator had told me to expect a $10 draw fee from the lab, payable up front, but $40 was just waaaay to much for something that took less than 15 seconds, IMHO), and she set me up with a standing order for blood work that tested for something innocuous like electrolytes.  So, I was able to get around the draw charge.

Sugarlump, I guess that's as good an explanation as I'm going to get.  The only thing I can think of that would change from month to month might be antibodies to infections that maybe I didn't have any symptoms for.  But if antibodies can develop so quickly, then why bother doing a monthly blood draw when you will obviously have blood drawn right before surgery (should a kidney become available) to get up-to-the-minute information?

I don't think I'm asking my question very clearly...I apologize.  Anyone have any ideas who I can ask?  I guess I can wait until my next tranplant eval meeting, but that won't be until July...

[Sugarlump]

I guess its to get an accurate match as possible with a kidney but they will always do a crossmatch first anyway. But they need to know if you're likely to have any antibodies that definitely won't get on with kidney. The antibody situation is really complicated and you probably need transplant neph to explain to you in more detail ... Can you not email your transplant doc?

[woodsman]

MM, the testing each month is to do what has been mentioned and also to check your levels of potassium, phos, infections, drugs, blood thinners etc...

[AguynamedKim]

I was just going to write something similar to what Woodsman said: infections/diseases.  I remember there was something that RichardMel had 2 different results on where the kidney he received during transplant had something that they thought he had - it was positive on an earlier blood test but negative on a later blood test.  I believe he is taking medicine for it and monitoring it.  That would make sense to me as to why they are taking labs monthly if infection/disease is one of the things they are monitoring for.

I know my dad has already investigated donating for me but he had a disease I didn't know about which takes him off the list (he's fine and lived with it his whole life without adverse affect but it's a no-go on a transplant).

I know it's a pain but I'm glad you get to be on the list MooseMom.  I'm looking forward to reading about you in the transplant section one day - and that awesome pee picture...

[rsudock]

Hey Moosemom another reason besides checking for the antibodies/and other infectious disease (such as CMV cytomegleavirus) is STDs. I suppose the transplant team has to operate that no one is going to be completely honest so they try to screen people for diseases etc... before they go in for a major operation. They don't want to have other outside complications popping up while a person recovers from surgery and their immune system has been lowered.  The first time I met the transplant surgeon he went over the lab work with me and was like, "Well ok you don't have HIV, Hep B or C, ...."  that's where I am pulling my info from....hope this helps.

xo,
R

[MooseMom]

Thanks everyone for those explanations!  I didn't mean to be a pest; it's just I think I may have been a doctor in one of my previous lives, so such things interest me.

[Sugarlump]

It's good to be informed and to learn about things relating to your treatment, however complicated. It helps you to deal with the ups and downs of a kidney transplant plus you can than be an active participant in your treatment choices. It's less scary when you begin to understand what's happening. My transplant doctor always takes the time to explain and discuss things with me, otherwise I go into panic mode!
Best wishes 

[Sax-O-Trix]

Oops...  I meant to say that my insurance company gets billed for the 3 month neph bloodwork, not me, I just get the notification letters stating what was charged and what was paid by the insurance.  I plan on finding out what organization is paying for the monthly UNOS draws the next time I see someone on the transplant team.

[okarol]

Thanks everyone for those explanations!  I didn't mean to be a pest; it's just I think I may have been a doctor in one of my previous lives, so such things interest me.

I am curious too, about why you're getting billed. Do you have Medicare and private insurance? Are you waitlisted yet?

[MooseMom]

Thanks everyone for those explanations!  I didn't mean to be a pest; it's just I think I may have been a doctor in one of my previous lives, so such things interest me.

I am curious too, about why you're getting billed. Do you have Medicare and private insurance? Are you waitlisted yet?

I didn't get billed...I had to pay $40 up front.  I'm not on Medicare; I have private insurance but that does not pay for monthly bloodwork for UNOS/Gift of Hope because the order does not come from my neph.  That's why his nurse worked up a standing order to check for electrolytes; it gets around the "your doctor didn't order this" obstacle.

SOT, I'd be very interested to hear who is paying for your UNOS draws.  Maybe your private ins co is paying, although my transplant coordinator warned that I'd have to pay the "draw fee" up front, so I don't know if most ins cos pay or not.  I know mine doesn't.  But now they will because now the order comes from my neph.

[paris]

MM, I was thinking of you today -- good things! lol.  I got a letter from the director of the HLA Lab at the hospital where the transplant center is.  It was concerning the red top tubes.   Of course, I haven't sent any red tops for 6 months.  The letter states - " It is very important that we receive monthy PRA samples on each individual who is awaiting transplantation so that the potential antibodies can be detected and identified. These samples are also used to facilitate the organ allocation process once organs become available. When monthly samples are not sent, there is a possibility that a transplant patient will be excluded as a recipent for a kidney".    It made me think of this thread.  It just reminded me of how important that little tube is.     Alll my labs always go through my private insurance.  Thank goodness.   You do keep all of us on our toes, researching, thinking and looking for answers!!   

[MooseMom]

Thanks for that, Paris.  If I'm told to send in sample each month, I will do it.  I am not trying to be contrary.  I would just like to know what would make someone's PRA change from month to month.  If this month I didn't get pregnant, didn't have a transplant and/or didn't have a blood transfusion, what else would make my PRA change from what it was last month?  I KNOW it is important, and I know WHY it is important, but my question is WHY is PRA so volatile, so variable that it has to be checked so often? (And when I ask this, I am NOT whining...I am intellectually curious!)  If, say, last month I had a bout of bronchitis, would that affect my PRA?  What if I had a cold?  A tooth abscess?  Any sort of innocuous infection that was quickly treated by a round of antibiotics?  Do these things affect one's PRA?

I'm just repeating myself, aren't I?

[Sax-O-Trix]

MM - I finally got a chance to look at my "check-in" paperwork this past week while at the at the hospital for my PRAT testing.  Under "insurance" it listed my private insurance company and then listed "Kidney Acquisition Fund".  The KAF is what has been paying for my monthly draws and some other transplant related testing.  I don't know anything about this fund, I did not sign up for it because of financial hardship or anything like that, I was just told at the beginning that that helped pay for pre-transplant tests.  Perhaps it is a local fund set up by a local charity?  I will look into it further for you if you would like.

[MooseMom]

SOT, I just now saw your post.  Yes, I would be very curious to know more about this "Kidney Acquisition Fund"...I've never heard of this.  Is it a fund particular to your state?  If you can find out more about it without spending too much time, I'd love to know more.  All of my pre-transplant testing has been paid for by my ins co except for the monthly draws, although now I have solved that problem.  Still, I AM curious about this KAF.