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natnnnat
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« on: June 04, 2012, 06:49:58 AM »

I recently saw a comment from Moosemom, in the thread about quality of life, a passing remark about how we need home blood testing units.
I nearly fell off my chair because this is my current pet cause.  I think we need home blood testing units for renal patients so that they can keep track of their blood levels themselves at home.  Urine testing too.  Don't you think that would be useful for people on haemo trying to keep their levels right, and trying to get their diet right... and wouldn't it be useful for people who are pre-dialsyis, to be really on top of diet and try to support the kidney as much as possible and stave off dialysis?  Which is where Gregory is at with his transplant.

I've been wanting to check Gregory's bloods more often lately so that we can change his diet if and when his levels get out of whack. I'm interested in watching for potassium. since he cut back on dairy and red meat, his phosphate seems under control. Anyway, what an issue it is to try and get extra blood tests!!! The renal doctor baulked at writing extra pathology requests. The GP turned out to be happy to get us tests once a month (talk about regular up to date information). But when we took his pathology slip to the local lab, it was closed, we went to another lab who told us everything was wrong about the request, so we went back to our local the next day... they did the tests but didn't want to give us the results. Gregory said, but its my lab results, about me? They gave him a number for the lab, but then the lab wouldn't give him the results, he has to go back to the GP. That was Saturday. Monday, today, the doctor is sick and has taken three days off. If only we had a home blood testing unit I say. So that we could check his levels every few days and see how he's going. I bet we could keep this kidney going much longer if we could keep track of the diet / bloods. And save the system heaps of money as I'm sure that regular blood testing, or even home blood testing units, would be cheaper than in-clinic dialysis, or even home dialysis...

end whinge.
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Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
natnnnat
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« Reply #1 on: June 04, 2012, 07:00:06 AM »

Here it is, that comment by Moosemom.  It's from http://ihatedialysis.com/forum/index.php?topic=26351.msg426407#msg426407
She said,
Quote
I wonder why someone doesn't make an easy to use meter like the ones diabetics use for their blood draws.  I guess they don't extract enough blood for them to do all of their tests.  Still, it would be a good idea.

In fact what gave me the idea was exactly that:  diabetic blood glucose testing for my cat, who I successfully got off insulin by changes in diet.  ESRD / CKD is different to diabetes, obviously (and cats systems turn out to be pretty resilient when it comes to diabetes), I can see times when, with renal problems, knowing your blood levels and being able to watch trends in your blood levels would be pretty useful, like to decide if you need aranesp, or to decide if you are eating too much whatsyface, or to work out why you feel so crap. 
What do you reckon?  Would it be useful to you ?  would you use it?  When?
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Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
paris
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« Reply #2 on: June 04, 2012, 08:24:14 AM »

There is such a unit!  I have used it and it is very accurate.  My hemoglobin was very hard to stabilize at first.  I was  the first in my nephs office to have these test kits at home, so if mine level dropped drastically, I could check it, and call them.   It is very similar to a diabetis test kit.  The meter was shaped different, but you stuck yourself, blood was taken and put in meter.  You waited a minute or so and then you had the results.   It was great!   I was going to the neph every few days and this allowed me to test at home and only go in when necessary.   It was extremely accurate and easy.      I remember posting about it and Epoman stating that he wished he had one and wondering how I got it. 

Wish I could remember the company name.  I'll search the old posts and see if I wrote the name there. 
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
Desert Dancer
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« Reply #3 on: June 04, 2012, 10:52:53 AM »

There is such a unit!  I have used it and it is very accurate. 

I also have a hemoglobin meter at home. It's called a Stanbio Stat Site and I got it at Amazon along with the test cards and high/low controls. Here's the link: http://www.amazon.com/gp/product/B001PLYXSS/ref=oh_details_o04_s00_i02

It's very accurate; I use it when I draw my regular monthly labs to see how close it is to their results and it's always close. I use it every treatment when they want me to take Epogen in order to decide whether to administer it or not.

There is also a potassium meter there but I haven't tried that one. Here's a link:  http://www.amazon.com/Horiba-C-131-Compact-Potassium-Meter/dp/B003NUZB6C/ref=sr_1_cc_1?s=aps&ie=UTF8&qid=1338832269&sr=1-1-catcorr
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August 1980: Diagnosed with Familial Juvenile Hyperurecemic Nephropathy (FJHN)
8.22.10:   Began dialysis through central venous catheter
8.25.10:   AV fistula created
9.28.10:   Began training for Home Nocturnal Hemodialysis on a Fresenius Baby K
10.21.10: Began creating buttonholes with 15ga needles
11.13.10: Our first nocturnal home treatment!

Good health is just the slowest possible rate at which you can die.

The glass is neither half-full nor half-empty. The glass is just twice as large as it needs to be.

The early bird may get the worm but the second mouse gets the cheese.
natnnnat
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« Reply #4 on: June 07, 2012, 04:00:18 AM »

I need potassium blood results, this one measures potassium in liquid samples like food, bananas, that sort of thing.  But buying a meter isn't a bad idea at all.  I'm going hunting for something.  I need potassium, phosphate, Hb and hell why not creat and eGFR too.  But I'd settle for the first three.
This looks pretty sexy though it is (I guess) overkill and it looks like its only available to medical professionals..
http://www.woodleyequipment.com/clinical-trials/point-of-care/i-stat-portable-clinical-analyser-76-78-470.php
still its nice to dream...
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Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
boswife
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us and fam easter 2013

« Reply #5 on: June 07, 2012, 06:56:47 AM »

oh man.... i have talked about this forever (not here but to hubby and family)  i had no idea one existed....  Im going to chech this out..  Thanks so much and doesnt it seem that we should each have these things at home.  We're doing another 'iron load' and i fear that we're going to od him on that or epo.. I woud love to have at least the hemoglobin one... going to check right now...
ps..........  has anyone gotton their insurance to pay for one of these???
« Last Edit: June 07, 2012, 07:01:45 AM by boswife » Logged

im a california wife and cargiver to my hubby
He started dialysis April 09
We thank God for every day we are blessed to have together.
november 2010, patiently (ha!) waiting our turn for NxStage training
January 14,2011 home with NxStage
paris
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« Reply #6 on: June 07, 2012, 10:33:03 AM »

Since mine was way back when and the doctor's office was given them to test, they gave me mine free.  This is such an easy thing -- why can't we be offered more of these types of things to help take care of yourself.   Just like a diabetic meter -- mine looked similar and worked exactly the same way.   
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
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