Dazed and confused

[MooseMom]

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

Thank you, PT!  I'm hoping for the same!

[okarol]

Hi MooseMom,
Hope your results come back ok and it's just a fluke. Very good idea to test for those pesky viruses, and best wishes that you don't have to deal with one of them.
Jenna has her blood drawn at dialysis now, but occasionally we will get a lab box and the phlebotomist at our family doctor will do the blood draw at no charge.
I am glad to hear you were able to visit your son in London. Best wishes to you! 

[cattlekid]

If you get a resolution from Quest, please let me know. I got the same response from my Quest center when I tried to request they do the outside draw so I am wondering if this is something that was handed down regionally? 

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]

Hi MooseMom,
Hope your results come back ok and it's just a fluke. Very good idea to test for those pesky viruses, and best wishes that you don't have to deal with one of them.
Jenna has her blood drawn at dialysis now, but occasionally we will get a lab box and the phlebotomist at our family doctor will do the blood draw at no charge.
I am glad to hear you were able to visit your son in London. Best wishes to you! 

I often think of you and Jenna.  How is she doing? 

[MooseMom]

Cattlekid, it just so happens that I DID get a response from a Katie LaBrose who looks to be the Patient Service Supervisor in this area, and she writes,

"I am sorry to say that this was a corporate decision and we no longer offer this service or allow our phlebs to draw the extra tubes to be sent to your transplant lab in Wisconsin.  I do apologize about this and do understand it is an inconvenience for you.  If there was anything I could do to get this done I would, I truly apologize about this inconvenience."

So, there you have it.

I did forward this email to my coordinator because when I first told her about this, I got the feeling she didn't really believe me.  But I know they get a lot of patients from Chicagoland, from my own local neph, actually, so Madison needs to be aware of this extra hoop we all have to jump through.

[Simon Dog]

Clinics have no problem teaching home hemo patients to insert 15 gauge needles, both blunts and sharps.     It should (emphasis should, not is) be possible to train many transplant candidates to do their own blood draws using the tiny (25ga or so) needles.

When I was having twice weekly platelet testing to see when I would be ready for hip surgery, I got a puzzled reaction when I brought in my own tubes already filled to the hospital (the exact  opposite of what you are trying to do).   I was tempted to tell them I got a home phelebotomy kit on Amazon.com.

You might want to see if you can get you local newspaper to do a story about how the Quest is failing to serve the community.

[iolaire]

You might want to see if you can get you local newspaper to do a story about how the Quest is failing to serve the community.

I support some coverage.

But I see it as more a failure of the transplant industry to make sure their patients/clients have easy access to fulfill the medical requirements of the transplant process.  No one told me the boxes where coming and the first time I got one I went to the transplant center to get it filled and they told me they don't do that after waiting forever they told me where I could get it done at a hospital lab offsite, and even that was a pain to get them to understand what needs to happen.  My vials go to John Hopkins but I'm listed at INOVA Fairfax and think that is INOVA's responsibility to make this process easy and cheap, and setup in a way so insurance will pay for the blood draw.

[MooseMom]

Iolaire, I'm sorry your transplant center didn't give you more information when you needed it.  There is no excuse for that.

To be fair, though, to my own transplant center, this is not their fault.  This "corporate decision" by Quest was news to them.  This is entirely Quest's fault.  I've been to 3 separate Quest facilities in my area over the past decades, so they pretty much have a monopoly around here.  In all of my pre-dialysis years and throughout my testing to get on the tx list, this is the first time I've encountered a problem with access to services.  My tx bods have been great.  They have always been eager to work with me and to require as little of me as possible.

If my labs come back ok and show that my creatinine is no longer rising, then that will be the end of it.  If my creatinine shows yet another rise, then I'll go to Madison for a biopsy, and they'll do a DSA at that time.  So, that solves the problem for now.  They don't think it is a rejection episode, so they are not pushing for this test to be now, especially as it would take too long to get the referral in the first place.

SimonDog, I may well do as you suggest and contact my local paper.  Thanks for the idea!

[KarenInWA]

I am back on the list at my own UW (University of Washington). They sent me a big envelope with copies of orders for my monthly blood draw with my dr's name on it. I can take that to any lab for them to draw. I can also get it done at UWMC lab and they take care of all the after work for me. So does my local hospital, which is in a different hospital network than UWMC. So far  I think my insurance is being billed for the draws at my local hospital. (this is for maintaining status on the list, not for post-tx labs).

KarenInWA

[cattlekid]

Thanks for the update.  This makes me thankful that at least for now, Edward Hospital Central Lab will still do the courtesy draws.  I will have to call them and see about the spinning though so I am prepared for next spring when I will have to do another HLA test for my yearly update. 

Cattlekid, it just so happens that I DID get a response from a Katie LaBrose who looks to be the Patient Service Supervisor in this area, and she writes,

"I am sorry to say that this was a corporate decision and we no longer offer this service or allow our phlebs to draw the extra tubes to be sent to your transplant lab in Wisconsin.  I do apologize about this and do understand it is an inconvenience for you.  If there was anything I could do to get this done I would, I truly apologize about this inconvenience."

So, there you have it.

I did forward this email to my coordinator because when I first told her about this, I got the feeling she didn't really believe me.  But I know they get a lot of patients from Chicagoland, from my own local neph, actually, so Madison needs to be aware of this extra hoop we all have to jump through.

[MooseMom]

I am back on the list at my own UW (University of Washington). They sent me a big envelope with copies of orders for my monthly blood draw with my dr's name on it. I can take that to any lab for them to draw. I can also get it done at UWMC lab and they take care of all the after work for me. So does my local hospital, which is in a different hospital network than UWMC. So far  I think my insurance is being billed for the draws at my local hospital. (this is for maintaining status on the list, not for post-tx labs).

KarenInWA

How are you doing, by the way?  Are you pretty stable?

[Simon Dog]

I do my draws as part of home hemo, but the Fresenius clinic I used is kind enough to provide mailing supplies including "Bill sender" UPS labels pre-printed with the FMC UPS account.   I keep a PDF of the order on my computer and print out a new copy each month.

[KarenInWA]

How are you doing, by the way?  Are you pretty stable?

MooseMom - yes, I am stable, which I am so thankful for! I just had labs done on Halloween and saw my regular neph earlier this month. My creatinine and BUN are my normal high, and all other #'s are normal (except for GFR, which is low - 17 on these last labs). So, even tho Lynette the kidney isn't keeping the kidney #'s normal, she does an excellent job on the K, phos, Calcium, hgb/hct, etc. And, 5 years out and still have normal Blood sugar!!!! I'm loving that!

KarenInWA

[MooseMom]

Karen, I am so glad to hear that Lynette is still chugging away.  Everytime I see the Seahawks on TV (which is very often), I think of you!

[lainiepop]

How r u doing moosemom? I had my bloods done yesterday so stressing on results wait. Got a 24hr blood pressure monitor on now as my bp is always high at clinic. At home it is not so tury want me to do this. Wont get much sleep with it buzzing every hour!

[MooseMom]

How r u doing moosemom? I had my bloods done yesterday so stressing on results wait. Got a 24hr blood pressure monitor on now as my bp is always high at clinic. At home it is not so tury want me to do this. Wont get much sleep with it buzzing every hour!

Well, see, that's just it.  I feel just fine.  I have no symptoms of anything to speak up.  That's why I'm dazed and confused.  No one seems to know why my creatinine is going up, but I'm having labs on Tuesday which will include tests for the usual viruses.  So, we'll see.

I'm feelin' your stress!  It's awful waiting for results.  Let me know what they say, OK?  I'm hoping you have nothing but good news.  Try to get some good sleep despite the bp monitor. 

[lainiepop]

Well I didn't sleep at all. woke up every hour the monitor went off!! Steve is taking the kids out in a bit for andrews guitar lesson and them taking them to mcdonald's so i can have a peaceful morning. then we will have a takeaway and movie night and early sleep!! 

Good luck on your labs. i guess i will know mine by then. I plan on calling before the tx nurse is in on monday morn and leaving a message saying i had bloods drawn thurs so tac level should be back today, so if they can let me know if anything needs changing and then hope they dont call haha!!!

[Athena]

Moosemum, I have no experience with Tx but do have plenty of experience in feeling what you're feeling right now while waiting for test results. I hope all this all blows over soon & it will be just some random, unexplained temporary change in your creatinine levels. The fact that you feel fine is a very good sign. Hoping to hear some good news.

[MooseMom]

Moosemum, I have no experience with Tx but do have plenty of experience in feeling what you're feeling right now while waiting for test results. I hope all this all blows over soon & it will be just some random, unexplained temporary change in your creatinine levels. The fact that you feel fine is a very good sign. Hoping to hear some good news.

Thank you, Athena.  It IS awful waiting for results, right?  You know that feeling of anxiety that gnaws at your gut, especially when you have absolutely no clue as to what those results might be.  I'm sorry you've ever had to feel that anxiety.  I'm sorry that all of us have had to feel that stomach roiling.

Yes, I'm glad that I feel well, but that just adds to they mystery of it, you know?  Along with being anxious, I'm also just downright curious!  I asked my coordinator if, given what we know at the moment, she had any gut feeling as to what's going on, and she said that she really didn't know.  But once I find out, I'll post about it.  Maybe this experience will help someone else down the road.

[MooseMom]

Well I didn't sleep at all. woke up every hour the monitor went off!! Steve is taking the kids out in a bit for andrews guitar lesson and them taking them to mcdonald's so i can have a peaceful morning. then we will have a takeaway and movie night and early sleep!! 

Good luck on your labs. i guess i will know mine by then. I plan on calling before the tx nurse is in on monday morn and leaving a message saying i had bloods drawn thurs so tac level should be back today, so if they can let me know if anything needs changing and then hope they dont call haha!!!

You know, when you are sleep deprived, everything looks so much bleaker.  The fatigue wears away what optimism you may have felt the night before.  It is on days like this when takeaways are a blessing.  What will you be ordering?  Curry?  Chinese?  And which moving are you thinking about watching?

I know exactly how you feel about NOT wanting that phone call!  LOL!

[cassandra]

Thinking of you MM, keep feeling well, positive vibes have been sent to you

      


Love, luck and strength, Cas

[MooseMom]

Oh, thanks Cas.  I appreciate it.  You're very kind.

[MooseMom]

ok, update.  I'll try to keep it short.

I take my bp in the mornings after I've eaten and have been up for a while.  I don't take my bp at any other time of day.

I've been really pushing fluids to get my creatinine down.

I've been very anxious over the past days as I am sure you all can imagine.

Yesterday we went to see Dr. Strange, and all throughout the movie and throughout the rest of the day, my left upper arm hurt.  It felt like certain big blood vessels were tightening.  This is the upper arm in which my ligated fistula resides.

As I went to bed to read, my arm still hurt, so out of curiosity, I took my bp, and thank goodness I did.  It was WAAAAY higher than any numbers I have EVER had...EVER.  It was around 170/100!!!  Of course these things happen on a Saturday night when there's no one to turn to, so I went straight to the ER.

They were able to see me right away, and I explained that I'd been stable for years but that recently I'd seen rising creatinine and lowering egfr, that I was due for labs on 11/22 to try to get to the bottom of it, and that in the meantime I had been pushing fluids and trying to cope with tremendous anxiety

They gave me a low dose of Procardia in pill form and an IV with Ativan and fluids to bring down my bp, to calm me and to make me pee respectively.

They took a blood and urine sample.

Bottom line is that my creatinine showed a decrease from 1.48 to 1.3.  GFR improved from 38 to 45.

No protein in urine.

Everything else fine.  No sign of uti.

They didn't do a tac trough nor tests for BKV, etc, as they are not set up to do those tests on an emergency basis.  Fair enough.

Back in May, my tx neph had taken me off amlodipine but kept me on atenolol as my numbers looked so good!  Looks like I might need the amlodipine after all.

Perhaps my bp was getting higher at night without me realizing it?

I've emailed all of this info to my tx coordinator, but she probably won't see it until tomorrow (Monday).

The ER doc did manage to speak with my TX neph who was relieved things were better.  I was surprised he was able to reach her in the middle of the night as she is rather the top dog. 

So, I suppose the consensus is that elevated bp was the culprit and that while pushing fluids certainly helped improve my numbers, bp is probably the underlying issue.

Hopefully, that's the end of this story.

Should I begin taking my bp at night, too?  What do you all do?

Thanks for all of your help and support. 

If you have any thoughts, I'd love to hear them.

 

[kickingandscreaming]

Should I begin taking my bp at night, too?  What do you all do?

I take it every day around 5pm when I begin to think about setting up my PD cycler.  I take 2 BP meds: amlodipine and a small (almost irrelevant) amount of hydralazine (I react poorly to most BP meds).  I take both in the morning.  My neph suggested I take my BP also in the morning to see if the hydralazine is actually doing anything.

Glad to hear there's a light at the end of your tunnel.  Keep it up.

[kristina]

Hello MooseMom and thank goodness your elevated bp is hopefully the only culprit and hopefully there is nothing else to be worried about...!!!
... You certainly had me worried about your health and your well-being !!!
... To answer your question about bp medication and when or how to take it:
... I take my first bp-medication at 8.30 every morning and then the second one at 22.30 pm and to make absolutely sure I won't forget, my watch is set with little noisy reminders for these particular times ...  and in case I am not at home at any of these times, I always have my reserve-bp-medication in my handbag and regularly check-up about the dates of these reserve-bp-packages to make sure they won't run out of their "sell-by" date, because the reserve "handbag-ones" don't have to be used often ...
My reasoning for these particular times came as a result of my own research by taking my bp during several days and figuring out the times when I needed to take my bp-medication.
For example, in the mornings I am a bit on the sleepy side and by taking my first bp-medication at 8.30 gives my body a chance to be really nicely under bp-medication by the time my bp would rise ... Furthermore, the 8.30-bp-medication keeps my bp nicely controlled during the whole day and the second bp-medication at 22.30 keeps my bp further controlled until next afternoon when it is time for the 8.30 am bp-medication to really "kick in".These times came about after taking my bp regularly and observing my own bp-medication-needs ...
The reason for me taking two bp-medications every day is because each dosis is very small (almost minute) but by taking two "small ones" every day it keeps my bp much better controlled...
... I do hope all this does not sound too complicated, but once you have checked-up your bp-medication-times and your own precise bp-medication-needs, it all becomes routine...
I wish you good luck with it all and please take great care of yourself and best wishes from Kristina.