Dazed and confused

[MooseMom]

I am 4 1/2 years post transplant.

I have been stable for most of that time.

My latest annual check up was in May, after which I was declared a "poster child for transplantation."  My creatinine was 1.13 and my egfr was 54.

Things have suddenly gone pear shaped, and I don't know why.

In August, my creatinine suddenly went up to 1.33 and my egfr decreased to 44.  My coordinator wasn't worried; she said they have plenty of patients who see these numbers decline during the summer.  She told me that I have nothing to worry about.

I didn't have labs in September as I was out of the country for an extended period of time.

Labs on 27 October revealed creatinine at 1.42, egfr down to 40.  My coordinator called and asked me if I had been doing anything different, and I explained that I had been doing a lot of work on my property, and she suggested I really push fluids because she was almost certain that lack of proper hydration was the culprit.  She also wanted me to have a blood draw for creatinine, which I did.

I got those results back today, and my creatinine is now at 1.48, egfr 38.  I am baffled.

Of course both my husband and I have put in calls to my coordinator, but she has not yet responded.  So I thought I'd turn to IHD and see if any of you had any ideas.

Other than bun, my other numbers have all remained within normal range.

It has occurred to me that maybe BKV is a possible culprit.  I have read up on it and understand that treating it means, essentially, reducing and/or changing the immunosuppressants and allowing the body's immune system to conquer it.  I also know that I am getting waaay ahead of myself, but we all know that that goes with the territory.

If anyone has any thoughts, I'd welcome them.  This is the first "crisis" I've had, and I am extremely upset and am finding it hard to understand how this (whatever it is) could so suddenly happen.

Thank you very much.

[Deanne]

No! This can't be. Every time I hear of someone with a transplant in possible trouble, I feel panic, both on the part of the other person and for my own future.

Are they planning a biopsy to check for possible rejection?

I've had a BKV blood test every six months.

[coravh]

We all have very different experiences with transplant, and yours has been extraordinarily, amazingly stable. My creatinine baseline is in the 150 - 180 range (1.71 - 2.05) and it's been that way for roughly the entire 14 + years of my transplant. Sometimes I go a bit lower, sometimes a bit higher. This could be a simple matter of a bit of aging of your transplant. For the time being, I would extra push the fluids and try to keep both fluids and exercise the day before labs consistent. That can make a big difference.

I absolutely get how scary this is, but try to relax a bit. The increases are quite small, although they are steady. Keep an eye on it and don't let your tx team get lax. I hope things will steady out for you. Please keep us posted.

[coravh]

Oh, and just to add, don't get too obsessed with the eGFR. My kidney problems pre-date the use of this marker and from what I have read, it can be very unreliable. Especially in women as it makes a lot of assumptions about your size and muscle mass along with other things involved in the calculation.  It's a decent ball-park sort of guideline, but those very small changes in your creatinine can very seriously affect the eGFR (a calculated value) so the proportional change seems like a lot.

[kickingandscreaming]

I have nothing substantive to add--as I have no experience with tx-- but I do empathize with how concerning this must be to you.  It would be to me.  I hope there is a good explanation for what's going on that can alleviate your stress.  Good luck.

[Deanne]

Ya'll make good points, and it reminds me that for a while post-transplant, my creatinine jumped from 0.7 to 1.4something. My TX center said it was likely permanent but they weren't concerned. I freaked out. It turned out they were wrong. My creatinine returned to 0.71 a few months later.

[MooseMom]

OK.  Here goes.

I've had several discussions/emails with my coordinator who has spoken with my tx neph's assistant (who I had seen back in May, the one who told me I was the poster child for tx).

First of all, they are very nice people. 

They don't seem to be all that worried.  I told them that it may very well be that there's nothing to be concerned about.  I told them I understood that creatinine and egfr are numbers that simply reflect one moment in time, a snapshot, if you will.  However, I sense that I am looking at a trend, and as a patient who understands the responsibility of maintaining a transplanted kidney and who sees herself as the captain of her own ship, I felt like I needed to discuss my concerns earlier rather than later.

So, they have sent me two orders, one for all of the usual bits PLUS tests for bkv, cmv and ebv.  In the order, there is also a urinalysis, so they'll be testing for protein and UTI.

The second order is for DSA. 

I've already set up an appointment next week to have my blood drawn.

Here's the kicker.  I have a DSA done each year as I'm sure most tx patients do.  Before my annual appointment, I mosey on over to Quest (like I've done for yonks), have my blood drawn and ALSO have my blood drawn into a special vial provided by my tx center (UW-Madison).  All of the other vials that Quest uses get sent to Quest's lab, and I get my results from Quest.

HOWEVER, the filled DSA vial is given back to me.  I put it in the bags and box that have been provided by UW, and I mail it back to their HLA lab.  Easy peezy lemon squeezy, right?  It always has been in the past!  I do this every damn year!

Well, it seems that the Corporate bods at Quest have just recently decided that they will no long draw blood into vials that will be going to an outside facility...like a transplant center.

I called my local Quest "patient service center" after getting my order from my coordinator because I had a question about having the sample "spun down".  Once it became clear to them that I was talking about sending this specimen on to someplace other than Quest, that's when they told me they could no longer do it.

I couldn't believe it.

My PCP's office is closed on Tuesdays (today), so I will contact them tomorrow to see what I'm supposed to do.  They have lots of tx patients (my original neph is in that practice), so maybe they can tell me what to do.

Surely I've misunderstood something.  Am I going to have to go to Madison each year just to have this one blood draw?

The DSA vial and box are already in the mail to me, so I will take it with me next week when I go to Quest for my other labs.  Maybe I've misunderstood.  But I don't think so, really.

I've relayed this to my coordinator, and she told me to try it on anyway, but if they refuse, then skip it.  I don't think they're worried about rejection, especially since I am so compliant and am asymptomatic.  But if my creatinine keeps going up, they'll have me come up for a biopsy and will do the DSA then.

So, that's the story.  I don't know if it will have a happy ending or not as it seems that the plot is still being written.

But I just can't believe that about Quest.  Do any of you go to Quest for your blood draws?  Have you ever heard anything like this?

I've emailed their patient relations department and complained.  Think they'll change their minds after reading MooseMom's little hissy fit?  Doubt it.

Thank you all for taking the time to respond.  I am very grateful.  Thank you.

[Charlie B53]

I had a problem with Quest, they would not do labs on Grandson because I didn't have his actual medical card.  We had the numbers, just not the card.

The solution:  Walked into St Joseph Hospital next door.   They did it no problem

Call your local hospital, ask of their lab people will do the draw for you to send out to the tx lab.

Use them magic words.   Please!

[MooseMom]

 Thanks for that, Charlie.  I may end up having to do just that.  I'm a bit concerned, though, that my insurance wouldn't cover blood draw charges without having a referral from my PCP, whose office is closed tomorrow (I thought it was closed today because they were not picking up the phone when I called).  Perhaps my PCP will sort it out for me (I'm on BCBS HMO so can't really just show up at some medical facility without a referral or some other paperwork, I'm assuming).  But yeah, that would be great if I could just do that!

[tigtink]

I'm so sorry you are going through this MooseMom. I can't even imagine the anxiety of it all. It's good they are testing everything and working closely with you. I'm praying this is just a bump in the road for you. I go to the lab at my local hospital. As long as I have an order from my doctor for other tests, they will do a courtesy draw for the vials I send to the transplant center without additional cost. You may have to find another lab, but I'm sure there is one who will accommodate you. My thoughts and prayers will be with you.

[Deanne]

I've never heard of the DSA test. Maybe they only do it here if they suspect rejection.

I wonder if some of the results could be caused by different test facilities. I think I heard somewhere once that results can vary by facility. I hope you just have a simple UTI  though.

[iolaire]

The DSA vial and box are already in the mail to me, so I will take it with me next week when I go to Quest for my other labs.  Maybe I've misunderstood.  But I don't think so, really.

This was one of my biggest pains pre dialysis is getting the vials filled.  The hospital labs will do it but will charge like $80 or $35 if I go to a reference lab for the hospital, but someone like Quest would do it for free (years ago) if I had another lab order to fill at the same time.  A receptionist/assistant in my nephrologists office would do it, but if I miss judged the date and showed up when she was not there the other people looked at me like I'm crazy, and then she went back to school to become a dialysis nurse...

[SooMK]

I'll be waiting for your update. These are the episodes that make transplant patients unable to ever relax completely. I go to Quest but have never had to request "blood to go". My donor in Michigan had to do this all the time before the transplant and never had a problem. I thought this was very standard since they wouldn't send off this packaging to people if finding someone to do it was so difficult. I wonder if this is a trend. I hope this is just a little bump that will be smoothed out soon. Wishing you the best.

[cattlekid]

Hello MooseMom,

I know this isn't exactly close for you, but Edward Hospital will do it no problem as a "courtesy draw".  Just head over there with your tubes, box and packing and they will do the draw and give everything back to you.  The lab tech who did mine was fascinated as this was the first time she had done a courtesy draw (she was really new).

If CDH is closer, call their Central Lab and see if they will do courtesy draws.  My gut says they will do the same as Edward and their hours are usually more expansive than a PCP's office.

I'm sorry to hear that your creatinine is going wonky.  Mine does the same in the fall, it has done so every year since I first was diagnosed with IgA back in 2000.  I always say it's because I have issues with keeping hydrated in the fall/winter.  Glad to see that UW is on top of everything as usual.

Paws crossed for you!

[MooseMom]

I've never heard of the DSA test. Maybe they only do it here if they suspect rejection.

I wonder if some of the results could be caused by different test facilities. I think I heard somewhere once that results can vary by facility. I hope you just have a simple UTI  though.

I have a DSA done every year as part of my annual checkup.  It's "Donor Specific Antibodies", and I'm absolutely sure you've had one.  Maybe they call it something different, like "HLA"?  My coordinator really don't suspect rejection as I am religious with my meds and I don't have any symptoms.  I think they are checking it just as standard procedure. 

[MooseMom]

I'll be waiting for your update. These are the episodes that make transplant patients unable to ever relax completely. I go to Quest but have never had to request "blood to go". My donor in Michigan had to do this all the time before the transplant and never had a problem. I thought this was very standard since they wouldn't send off this packaging to people if finding someone to do it was so difficult. I wonder if this is a trend. I hope this is just a little bump that will be smoothed out soon. Wishing you the best.

Thanks!  You see, though, that's just it.  I've had blood drawn for this test at Quest for four years now.  They'd draw the blood into the special vial sent to me by my tx center, but I'd package it up properly and mail it back to Madison myself.  But now Quest is telling me that they've had a change in policy, and all they've told me was that I'd have to meet with my doctors to make other arrangements.  I'm still hoping it has all just been a misunderstanding.

[MooseMom]

Hello MooseMom,

I know this isn't exactly close for you, but Edward Hospital will do it no problem as a "courtesy draw".  Just head over there with your tubes, box and packing and they will do the draw and give everything back to you.  The lab tech who did mine was fascinated as this was the first time she had done a courtesy draw (she was really new).

If CDH is closer, call their Central Lab and see if they will do courtesy draws.  My gut says they will do the same as Edward and their hours are usually more expansive than a PCP's office.

I'm sorry to hear that your creatinine is going wonky.  Mine does the same in the fall, it has done so every year since I first was diagnosed with IgA back in 2000.  I always say it's because I have issues with keeping hydrated in the fall/winter.  Glad to see that UW is on top of everything as usual.

Paws crossed for you!

It is very possible that my local hospital will do a courtesy draw.  I will call them today.  My tube and box should arrive in a day or two, so I have a little time.  I'm hoping that someone in my PCP's office can do it, but they are closed today; I will contact them tomorrow.

My coordinator did tell me to push fluids as much as possible but to stop at the point where it feels like my eyeballs will float away!

[MooseMom]

Red Tape Update!!!!

Yes, my local hospital will do courtesy draws, and I don't even have to make an appointment.  I can just walk in.

However, if I don't want to pay out of pocket for this (the sample needs to be drawn AND spun, and the woman I talked to started talking about "handling charges"), I was told to contact my insurance company, so I did.  I'm on BCBS HMO, so I know that I need a referral just to breathe.  They spoke with the referral dept. at my PCP office, and they confirmed that yes, I will need a referral if I want my insurance to cover it.

Bottom line is that yes, my local hospital can do it, but I need a referral.

So, if any of you use Quest and have to have samples sent away to your tx center, it might be a good idea to call your local Quest Patient Service Center and clarify things before you show up with your little box and vial.

 

[cattlekid]

Good to know about the Draw and Spin.  I've never had to have my HLA tests for UW spun, it's always just draw, package and ship.   But it's good info to file away for the future.  Glad to hear that the hospital will be able to help you. 

[lainiepop]

Hi MOosemom. Sorry to see your post. Don't know if u saw my last post but my creatinine has crept a bit too an we are both 4 and half yr post tx now.  I have had a few non kidney issues post tx as u know, notably a seizure 5 Mnths post tx and a serious bowel op 2 yrs post. Throughout all this kidney has been unaffected with creatinine stable in the 70s. Well just before we went to America last yr my creatinine went from around 74 to 84. Doc wasn't concerned but I pushed for another blood test 2 weeks later and it had jumped again to 90. They decided to reduce my tacro by 0.5mg and a week later bloods showed creatinine had reduced to 80 again. It stayed around 80 and 81 til this July when it went to 84. Doc wasn't concerned told me all was well and sent me on my way. Fast forward to october and creatinine creeped to 87. Now I know this isn't massively high but the trend concerns me and I am worried about rejection just when I'm feeling great. Had a cervical cancer scare a few Mnths ago. Fortunately didnt need treatment but I guess I just feel like once i don't have to worry about one thing another comes along. Plus our niece has had leukaemia since she was 1 and a bone marrow tx she is now 3 and just been told it has come back so she is starting treatment all over again.
I was supposed to be going for a blood test today as they put my tac up again by 0.5 mg but didnt get there as car battery was flat as i had left a light on. So will be getting bloods done tomorrow. THinking of u moosemom as i totaly understand how u r feeling right now. MY tx team don't seem concerened at all though! xx

[MooseMom]

I've never had to have my HLA tests for UW spun, it's always just draw, package and ship.   

I know!  I looked back through my records, and I have DSA orders from previous years that specifically say NOT to spin down the sample, so I don't know why this sample needs to be spun.  I have just emailed my coordinator to make sure this is what they want (and why, because I am curious) because it occurred to me that the hospital may charge a billion dollars for the spinning, and if it is really necessary to have it spun, I want my referral to include said spinning.

This is all so stupid and is not making me feel any better.

Interestingly, though, I did receive a reply from the Quest Patient Advocate to my email.  She apologized for the inconvenience and asked for the phone number of the specific Quest center that I use so that she can call the manager.  I don't know if this will change anything, but at least it's something.

[MooseMom]

I'm sorry I missed your last post, lainiepop.  I've just read it; I missed it because I was actually in the UK at the time!

How are you feeling these days?  Has the uti cleared up, and is your creatinine back to normal or is it still all wobbly?

I remember all too well some of the non-tx medical issues you've had.  You've always been a fighter, but even fighters feel fear and anxiety, right?

I feel exactly the same as you.  Just when you start to let your guard down just an itty bitty bit, something comes along to remind you that no, you have to be on your guard at all times.

Like your doc, mine isn't really concerned, either, but it is our job as tx patients to track what we think may be a trend and to voice our concerns.  That's part of the responsibility we bear, and I'm OK with that; I'm sure you are, too.

Again, I feel really bad that I missed your post.  I would have replied with some (hopefully) reassuring words because yes, your feelings are all too familiar to me (and to all of us!).

[lainiepop]

Don't worry, we all miss posts! i remember u commented on my cervical cancer scare one! The original rise for the creatinine i think was as my tac level was too high. my body has always been sensitive to it it seems. The uti turned out to be not what was making me poorly, it was the same uti that i have had for 2 yrs and never got ill from (if u remember my bladder is defferent as made from bowel so always got bugs in it. thankfully theyve decided ton stop giving me antibiotics as they were making my immune system bad and i cauhght cold after cold! My last blood test was only 3 weeks ago so i will get it drawn tomorrow.
Where were u in the uk? we are going to berlin for a few days before christmas this yr and then planning on our west coast trip in summer 2018 but know am worried it wont happen I feel fine, just tired from work and running kids round everywhere lol. but normal tire. i am anaemic too. struggled with that since tx due to heavy periods that are no longer irregular but come a few days early every month. oh joy!!!

[PrimeTimer]

Moosemom:  Just wanted to say that I hope you and your bean (kidney) are alright and that you get good news soon. 

[MooseMom]

Lainiepop, I was in London.  If you remember, I lived there for almost 20 years.  My son still lives there, so I was visiting friends and family.

My tac level is within the range they want, but you never know; maybe my body has become more sensitive to it over time.  I do remember your bladder situation.  I'm glad they've stopped the antibiotics as they do seem rather pointless in your particular situation.

I hope you get to go on your West Coast trip next summer.  Are you afraid that the fates will conspire against you and your numbers will go all wobbly again just as you are getting ready to depart?

Cattlekid, I've just had an email from my coordinator, and she said that the spinning was requested by the lab and is "something new".  She didn't know the reasoning behind it, but said that it has to be done.  So, there's another hoop we have to jump through.  I had asked Quest if they could spin down a sample, and they said they could but that it would take about an hour, so it would be a case of having the blood drawn and then waiting around before it was ready to mail back to UW.  Doesn't that sound fun?